Lyme on my mind

November 11, 2013

Astrid13 recalls the alarming mental confusion associated with her life of chronic illness and explains how her own search for answers may finally be yielding results – though she still has a long road to travel…

Astrid - Bad Day

Bad day

In 2006, following a miscarriage, I began to suffer the most horrible cognitive decline.

A D&C had been performed under general anesthesia and after a brief recovery at the hospital, I was free to go home.

However, the days that followed began what was to become the most confusing and alarming time of my life.

My hormones were raging, my emotions were going haywire, and I was convinced that I had also left my brain in that cold and sterile Operating Room.

I began to mill around at home, a place I had lived in for the past 2 years and was quite familiar with. I remember making a cup of soup and then beginning to do the dishes.

But as I reached up to activate the garbage disposal, I no longer knew which of the 3 toggle switches on the tile backsplash controlled the disposal function. I froze…

It is ironic that a series of electrical switches baffled me because I also felt it was literally as if someone had flipped a switch in that high functioning part of my brain.

My days were riddled with pain and disorientation…

I got lost going to work, I got lost coming home. I carefully paid the bills using checks and paper statements. I meticulously placed the payment in the envelopes, affixed proper postage and walked the bills to the mailbox located down the street.

For two days I searched for that pile of bills. I contacted each company and arranged for payments over the phone and paid each one. I had zero recollection of paying the bills the two short days previously. It wasn’t until the businesses contacted me one-by-one that I realized I must’ve forgotten the entire process.

My husband and I took a week long trip to White River, Arkansas. I lost everything I touched. Keys to the RV, our camera, my cell phone. My sanity. From those times and through the years that followed, “normal cognition” no longer seemed to apply!

I’d be lucky to remember my birthday, not to mention anything less meaningful. I was swimming through mud each and every day. I was scared and shaken.

I began seeking help for depression after my husband came home to find me sitting in the dark on the cold slate of the bathroom floor, lightly banging my head on the full length mirror. I was lost and no one could find me or my 30 year old brain.

Under Our Skin

Link to trailer

A slew of diagnoses ensued – Depression, possible Bipolar 2, general anxiety disorder, Narcolepsy, ADHD, Fibromyalgia, and more. I was admitted to the ER under the stroke protocol and in less than a year, I suffered a series of seizures as well as catatonia.

The only task that I felt able to perform was powered by Google. I was on the computer around the clock researching global amnesia, and according to the information I found, my brain would begin to recall pertinent information again in due course and by itself.

But that never happened – I continued to deteriorate and suffer. 

It wasn’t until April 2013 that I received a big break. Although my brain was the first to go, my body had soon followed. The arthritis-like feeling in my neck, hips, and fingers had left me reeling in pain, with no explanation or relief.

A stranger to Pinterest, I was piddling around on Fibromyalgia forums in search of homeopathic bath soaks, when low and behold, I saw a notice for “Under Our Skin.”

This is an award-winning feature-length documentary about Chronic Lyme Disease, and I immediately felt the remaining pieces of my puzzling decline were finally within reach.

Diagnosis and treatment…

Lyme Disease Symptoms

The Symptoms of Chronic Lyme Disease – image supplied by author

Over the next 2 months, I diligently researched Chronic Lyme Disease and officially received my diagnosis on July 3, 2013.

I had been bitten by something in Arkansas 7 years prior. There was no EM (Erythema Migrans) or “Bull’s Eye” rash that I can recall, and I never saw the tick that got a piece of my left hip.

Perhaps I never noticed, because a nymph tick is size of a poppy seed and can go undetected for days before it is discovered, or falls off of its own accord.  

I was infected with Lyme Disease that had primarily attacked my brain and had then stealthily moved on to a host of other body systems and organs. 

Currently, I am forced to travel out-of-state for treatment. It is a painful but, I feel, necessary, 8 hour drive every 4-6 weeks.

I need a PICC Line (Peripherally Inserted Central Catheter) and IV treatment because I suffer from Neuro Lyme or Neuroborreliosis caused by Bb (Borrelia Burgdorferi) bacteria.  

A catheter is inserted into the superior vena cava and antibiotics are administered through a port above the heart. My physician is leery of PICC because there is not a physician in my home state of Texas willing to cooperate and help keep the PICC clear of infection and complications.

Astrid - Medications

My medications

I have been on a treatment protocol for 9 weeks and have been forced to take an extended leave of absence from work, where I am now at risk of losing my beloved position as an Adapted Physical Education teacher.

I am on 25 pills each day, and 4 of them are high dose antibiotics, together with 1 anti-malarial medication for one of my co-infections, Babesia, and I give myself self-administered injections 2 times a week.

Treatment has certainly been no cakewalk either!

The reaction from the medications coupled with the debilitating Lyme symptoms leave me bedridden most days. Unable to work or care for my children, unable to leave the house or see the sunshine. 

 I am expected to make a recovery, but I am facing 3-5 years of treatment. The antibiotic route is the best for me at this time because I have been infected with Lyme and Babesia for 7 years and Bartonella for 27 years from Cat Scratch Fever at 8 years old that wasn’t properly treated.

It is a long and bumpy road, but despite it all, I do feel I am one of the lucky few. I have answers. I have direction. I have support. It wasn’t always the case, but I encourage each of you to be your own advocate when doors slam in your face and your standard labs come back normal.

I had contacted the specialty lab, Igenex, in Palo Alto, CA. I convinced a physician at a local walk-in clinic to sign the orders. I received the results directly 4-6 weeks prior to getting in to see my LLMD (Lyme Literate Medical Doctor).

My relentless Google powered efforts are paying off. So keep up the fight. You are worth it and no one need fight alone.

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78 comments

{ 78 comments… read them below or add one }

Astrid13 November 11, 2013 at 7:42 am

My personal blog can be found at rocasvida.com
:)

meandthecat November 11, 2013 at 10:06 am

Dear Asrid13 your description of cognitive decline sets great bells clanging in my head and how hard it is to explain the total inability to do the simplist things. 2+2 does not equal 4, A does not followB as thought unravels.
Good luck on your journey.

snowathlete November 11, 2013 at 10:34 am

Thanks for telling your story!
I discovered I have Bart and Lyme this year!

Xandoff November 11, 2013 at 2:48 pm

Watch this movie…you will be glad you did!

justy November 11, 2013 at 3:15 pm

Thanks for writing about your experiences here and especially for alerting us to the film – I just watched it this afternoon and it was very good. Here in the UK we have the same problem with any GP who treats CFS/M.E patients with real treatements being hauled up in front of the GMC – some have had special measures imposed and are continually harassed by the medical authorities.

The film was really pretty scary as here in the uk we don't even have any testing offered at all, and no LLD's that i'm aware of. It makes me woder if there is any point in faffing about the edges with diet, adrenals, supplements ect when it's very possible I could have some kind of tick borne vector.

I spent a lot of time hanging out in fields as a teenager on the fringes of London and camping out in the grass. Now we live in an area with a LOT of ticks, as my dog keeps coming in with them all the time. Over the summer we removed 35 in one sitting from his head and ears. Strangely though our vet says there is no LYme disease here – how can he be sure of that? How do we know the dog is even safe from the tick bites?

It's got me wondering about whether it's possible to get good testing here in the UK such as that done by KDM in Brussels.

all the best,
Justy.

roxie60 November 11, 2013 at 7:41 pm

Thanks, amazed at the similarities we all have and yet a few differences. Curious about your IGenex results. I'm trying to determine if I have Lyme, my gp says no based on NEG IGenex even though there are a few INDs /+s, also had low CD57 of 55. If you dont mind would you share your IGenex results. A lot of confusion about Lyme diagnosis so feel better when I see other peoples results. I've been fighting this 'mystery illness' since 2005-2006 and I'm fed up. I dont want Lyme I just want answers and I'm not sure my GP really has the knowledge to rule out Lyme.

Marilyn60 November 12, 2013 at 4:30 pm

I live in UK and things re Lyme Disease diagnosis are rather dire although Lyme Disease Action is making some progress with Public Health England – it will be a long time before things improve.
I was diagnosed with Fibro, ME/CFS, Musculo skeletal Disease, Polymyalgia Rheumatica before a chance course of antibiotics significantly improved my symptoms a led to GP suspecting Lyme Disease ( other patients had been diagnosed at my surgery in Guildford Surrey)
My NHS and later IgeneX tests were negative but my response to antibiotics was sufficient witha clinical history of bites, bulls eye rashes summer flu and migrating arthralgias before a chronic painful debilitating illness developed.
On long term antibiotics I regained my health and life.

There are many reasons why blood tests can be negative and still a person can have lyme even Igenex says this on their test results.

There is so much information available for patients to get informed so they can make informed choices – just don't expect NHS doctors to know anything worth knowing about Lyme disease visit http://www.lymediseaseaction.org.uk/

Even if you do not think your ME could be Lyme Disease it is worth reading Dr Horowitz new book relevant for anyone with Chronic illness links to a video, a chapter of his book and amazon on my blog http://lookingatlyme.blogspot.co.uk/2013/10/infection-inflammation-immune.html

Good luck in finding the causes of your ME and in being able to treat those causes.

S.A. November 13, 2013 at 10:42 am

Thank you for sharing your courage and determination!

Astrid13 November 19, 2013 at 7:40 am
meandthecat

Dear Asrid13 your description of cognitive decline sets great bells clanging in my head and how hard it is to explain the total inability to do the simplist things. 2+2 does not equal 4, A does not followB as thought unravels.
Good luck on your journey.

My goodness!! Hello everyone! I've been rather ill since my post, but I am here now and ready to chat with you all:)

Astrid13 November 19, 2013 at 7:42 am
meandthecat

Dear Asrid13 your description of cognitive decline sets great bells clanging in my head and how hard it is to explain the total inability to do the simplist things. 2+2 does not equal 4, A does not followB as thought unravels.
Good luck on your journey.

Meandthecat-
Is it possible that you might have been infected with Lyme's? It can mimic 350 different diseases?

Astrid13 November 19, 2013 at 7:56 am
Marilyn60

I live in UK and things re Lyme Disease diagnosis are rather dire although Lyme Disease Action is making some progress with Public Health England – it will be a long time before things improve.
I was diagnosed with Fibro, ME/CFS, Musculo skeletal Disease, Polymyalgia Rheumatica before a chance course of antibiotics significantly improved my symptoms a led to GP suspecting Lyme Disease ( other patients had been diagnosed at my surgery in Guildford Surrey)
My NHS and later IgeneX tests were negative but my response to antibiotics was sufficient witha clinical history of bites, bulls eye rashes summer flu and migrating arthralgias before a chronic painful debilitating illness developed.
On long term antibiotics I regained my health and life.

There are many reasons why blood tests can be negative and still a person can have lyme even Igenex says this on their test results.

There is so much information available for patients to get informed so they can make informed choices – just don't expect NHS doctors to know anything worth knowing about Lyme disease visit http://www.lymediseaseaction.org.uk/

Even if you do not think your ME could be Lyme Disease it is worth reading Dr Horowitz new book relevant for anyone with Chronic illness links to a video, a chapter of his book and amazon on my blog http://lookingatlyme.blogspot.co.uk/2013/10/infection-inflammation-immune.html

Good luck in finding the causes of your ME and in being able to treat those causes.

Yes, Marilyn60, you bring up a fantastic point. Lyme Disease must be considered even if testing yields negative results. From my studies, I've also learned that lab results can vary from day-to-day. LLMDs will still diagnosis and treat based on clinical presentation of symptoms and medical history. I am so glad that you were able to regain your health and receive proper treatment!! We are among the lucky few! Thank you so much for sharing your story and knowledge!

Astrid13 November 19, 2013 at 7:57 am
snowathlete

Thanks for telling your story!
I discovered I have Bart and Lyme this year!

Best of Luck to you!! It's liberating to discover the truth behind our illnesses. Please keep me posted as I am so curious about your journey and recovery to health!!
Xoxo

Astrid13 November 19, 2013 at 7:59 am
Xandoff

Watch this movie…you will be glad you did!

Yes, Xandoff! It's is alarmingly eye opening and informative. I suspect so many sufferers are misdiagnosed and the movie really drives that point home.
Xoxo

Astrid13 November 19, 2013 at 8:03 am

Hi Justy!
Thanks for posting:) If you were exposed to ticks at a young age and you are currently finding them on your dog, then the chances are very high that you've contracted a vector borne disease. I am not aware of any LLMDs there either, as I live in the US, but there is a large forum where you can chat with others called MD Junction. Please check it out and you can also get an Igenex lab kit sent directly to you, if you have a lab or physician willing to sign the orders.
Please keep me posted, I'd love to help you!!
Xoxo

Astrid13 November 19, 2013 at 8:07 am
roxie60

Thanks, amazed at the similarities we all have and yet a few differences. Curious about your IGenex results. I'm trying to determine if I have Lyme, my gp says no based on NEG IGenex even though there are a few INDs /+s, also had low CD57 of 55. If you dont mind would you share your IGenex results. A lot of confusion about Lyme diagnosis so feel better when I see other peoples results. I've been fighting this 'mystery illness' since 2005-2006 and I'm fed up. I dont want Lyme I just want answers and I'm not sure my GP really has the knowledge to rule out Lyme.

Yes, I will post results today! Please remember that testing only confirms Lyme's and diagnosis should be truly based on clinical diagnosis. It is quite possible that you are still positive and that is why a Lyme Literate Medical Doctor is crucial in cases like yours. I will get the results up today and I'd love to share more with you and help you get more direction!
Xoxo

Astrid13 November 19, 2013 at 8:09 am
S.A.

Thank you for sharing your courage and determination!

Thank you, S.A.!
I sure hope my story resonates with others so they are able to find their way through the sea of misdiagnosis!

Astrid13 November 19, 2013 at 8:19 am

Please follow my blog at http://www.rocasvida.com
It is a wealth of information for anyone that suspects Lyme may be the culprit in their medical woes. It also encourages us all to take matters and become our own health advocates!

Astrid13 November 19, 2013 at 10:51 am
roxie60

Thanks, amazed at the similarities we all have and yet a few differences. Curious about your IGenex results. I'm trying to determine if I have Lyme, my gp says no based on NEG IGenex even though there are a few INDs /+s, also had low CD57 of 55. If you dont mind would you share your IGenex results. A lot of confusion about Lyme diagnosis so feel better when I see other peoples results. I've been fighting this 'mystery illness' since 2005-2006 and I'm fed up. I dont want Lyme I just want answers and I'm not sure my GP really has the knowledge to rule out Lyme.

Hi Roxie60,
Here ya go…
Lyme IgG Western Blot
**31 +
**34 +
**39 Ind
**41 +++ (triple intensity!!)
58 +
**83-93 Ind
Igenex Positive
CDC Negative

Lyme IgM Western Blot
18 +
**23-25 Ind
** 31 ++
** 39 Ind
** 41 +
58 ++
**83-93 Ind
Igenex Positive
CDC Negative

IFA, B Burgdorferi Results= 40
<40 Negative
40 Equivocal
= or > 80 Positive

CD57 Results-
CD57 NK Absolute CT= 67

<40 Low
40-98 borderline
>98 Normal

CD57 NK Cells % Lympho=2.26

<2.26. Low
2.26-4.65 Borderline
>4.65 Normal

Please send me yours and I will help you sift through them!!
You may also want to retest if it's been awhile. I know that it's costly, but at this point, every bit of our illnesses rob us of so many things.
I'd be glad to help in anyway!
Xoxo

Pam123 November 19, 2013 at 11:05 am

Astrid13:

Thanks so much for posting your story. My daughter has been so ill for the last 2 1/2 years. Finally tested positive for Lyme (IGM positive – IGG negative). CD57 of 4!!

She has just started antibiotics and I know it is going to be a long road ahead but at least I feel we are on the right track.

Good luck and hope you are feeling better soon.

roxie60 November 19, 2013 at 11:07 am

Thx, I did post my results here in another thread (I think it was the Lyme testing thread). Mine came back negative a few weeks ago but I had a few INDs which I have since learned should not be ignored especially if I have been sick with various symps for more than a year. I have been battling for about 8 years. So the theory as I understand it currently is I may not be producing enough antibodies for the bands to show up strong positive. You definitely lit up that IGenex test. Was that your first time testing with them? I did not do any of the co-infections tests.

My CD57 NK abs was 55.
My IFA was <40 and the PCRs were negative.
I was '+' on IgM 83/93 and IND for 31,34, 41 and I was IgG '+' for 41
(as a result from these tests above my pcp says I dont have Lyme just general immune suppresion)

Trying to decide on a Lyme doctor to see. The couple I am looking at have backlogs and are not seeing new patients for 4-6 months. One did agree to consult with my pcp and review my CDC and IGenex results which I thought was nice. I am just wanting a more definitive diagnosis if possible, like a test that confirms before putting myself thru more drugs and supplements.

Guess I am just jaded from so many years of not really making any progress.

I have actually become fearful of taking drugs and supplements since I have had so many reactions over the years.

Astrid13 November 19, 2013 at 12:46 pm
roxie60

Thx, I did post my results here in another thread (I think it was the Lyme testing thread). Mine came back negative a few weeks ago but I had a few INDs which I have since learned should not be ignored especially if I have been sick with various symps for more than a year. I have been battling for about 8 years. So the theory as I understand it currently is I may not be producing enough antibodies for the bands to show up strong positive. You definitely lit up that IGenex test. Was that your first time testing with them? I did not do any of the co-infections tests.

My CD57 NK abs was 55.
My IFA was <40 and the PCRs were negative.
I was '+' on IgM 83/93 and IND for 31,34, 41 and I was IgG '+' for 41
(as a result from these tests above my pcp says I dont have Lyme just general immune suppresion)

Trying to decide on a Lyme doctor to see. The couple I am looking at have backlogs and are not seeing new patients for 4-6 months. One did agree to consult with my pcp and review my CDC and IGenex results which I thought was nice. I am just wanting a more definitive diagnosis if possible, like a test that confirms before putting myself thru more drugs and supplements.

Guess I am just jaded from so many years of not really making any progress.

I have actually become fearful of taking drugs and supplements since I have had so many reactions over the years.

Yes, Roxie60. I fully understand. Every medication I tried made me worse, but I know now that it's because they were all the wrong meds. Lyme feeds on Steroid treatment and we all know that steroids are shelled out for inflammatory disorders. I never once had any type of improvement with medications until now. I was treated for Fibro and Narcolepsy, but the decline was strong and steady.

Most PCPs, most doctors, won't bat an eye at your lab results. They either do not know how to interpret them and simply look at the "negative" result. There is clinical significance in any band being represented. It was my first time to test with Igenex and I had two prior Lyme Screens using the Elisa and IgG, considered negative bc of CDC guidelines. I had the co-infection panel done, but those are better dxed by a specialist using symptom checklists.

Do me a favor…
Visit this website and print out the PDF of the entire list of symptoms. Highlight or notate all the symptoms you've had over the years. This will speak loudly to use and whether or not it could still be Lyme's. Yes, the longer you are infected, the antibodies that are produced continue to change and evolve. Our bodies actually may stop making certain antibodies and concede to the disease.
Check it out: http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html
Let me know how it goes!!

Astrid13 November 19, 2013 at 12:50 pm
Pam123

Astrid13:

Thanks so much for posting your story. My daughter has been so ill for the last 2 1/2 years. Finally tested positive for Lyme (IGM positive – IGG negative). CD57 of 4!!

She has just started antibiotics and I know it is going to be a long road ahead but at least I feel we are on the right track.

Good luck and hope you are feeling better soon.

Thank you, Pam123!
It is a long road for us all, but the hope that is cultivated in receiving a proper diagnosis and respective treatment is enlightening. I feel like I have a second lease on life, yet I'm 3.5-5 years from beating this bugger :)
I'm so glad that you have answers and direction. Knowing is more than half the battle!! Please keep me in the loop. I'd love to hear more!
Xoxo

vamah November 19, 2013 at 1:42 pm

Thanks for the great article. My problem is that everything I read makes me more confused. I had an igenex test last year, which I saw at the time as being negative, but now I'm not sure.

My cd57 was 51. IFA 40. On the Igg I was ind on 31 and ++ on 34. Igm was ind on 39 and + on 41.

I have been taking valcyte for very high hhv6, but my health hasn't really improved. There ar a couple good lyme doctors in my area, but they don't take insurance. I'm also concerned that some lyme doctors just see lyme everywhere. If I have lyme, I have had it for 15 years and have mostly been in good health until the past few years. Can this happen, do you know?

I don't want to be spending energy and money treating lyme I might not have and ignore something else because of it. Sometimes I think its very possible and other times I just don't. I'm not sure what to do a this point.

vamah November 19, 2013 at 4:47 pm

I realized that something in my above post could be read in a way I did not mean it to be. When i said lyme docs may see lyme everywhere, I don't mean to denegrate them. I thin it is probably true of any specialty that doctors may gravitate to diagnoses they are familiar with, whether it is infectious disease, psychiatry or anything else. Lyme specialists are no better or worse than others in this respect.

Ok, maybe they are better than psychiatrists. ;)

Astrid13 November 19, 2013 at 6:07 pm
vamah

I realized that something in my above post could be read in a way I did not mean it to be. When i said lyme docs may see lyme everywhere, I don't mean to denegrate them. I thin it is probably true of any specialty that doctors may gravitate to diagnoses they are familiar with, whether it is infectious disease, psychiatry or anything else. Lyme specialists are no better or worse than others in this respect.

Ok, maybe they are better than psychiatrists. ;)

Hi Vamah!
Thanks for reading and replying:) It is all very confusing. I've been infected for 27 years, but was rather asymptomatic until 7 years ago. Yes, it is quite possible and a number of Chronic Lyme sufferers realize they have indeed had it most of their lives. By no means am I an expert, but my doctor who is one, suggests that 80-90% of autoimmune disorders are caused or triggered by bacteria, as in Lyme Disease. Also, some Lyme patients encounter full body retaliation and every single part of their bodies become infected and compromised, whereas others have Lyme attack one certain body system. I know a woman who wasn't sick otherwise, but was having a horrible problem with fluid behind her kneecap. Many procedures later, they finally tested it and it was positive for Lyme. No two people have the same symptoms and like I mentioned above, Lyme is known to mimic well over 300 other conditions including ALS, Alzheimer's, MS, Lupus, CFS, Fibro, Rhuematoid Arthritis, etc!!
One of the best things I could have ever done was use the comprehensive. list (PDF format) to recognize all the symptoms that I've experienced over the years. I encourage you to do the same and please share your findings!
Btw, I took no offense to your comment about LLMDs, there are plenty of docs that seem to get on bandwagons, I truly feel in my heart of hearts that more need to get on this one :)
http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html

taniaaust1 November 19, 2013 at 6:29 pm
roxie60

I have actually become fearful of taking drugs and supplements since I have had so many reactions over the years.

Roxie, I notice on your genetic profile at bottom that you have CYP2D6 listed. Are you aware that that can affect your response to 25% of pharma drugs out there http://en.wikipedia.org/wiki/CYP2D6. You may want to look closer at your gene results to have a better idea of what drugs are more likely to cause you issues so you know better which to avoid so you can make better trial choises. I have CYP2D6 +- myself (3x) and have found that nearly all my bad drug reactions have been to one of those drugs.

roxie60 November 19, 2013 at 7:09 pm

I did find nother nugget in the link you provided. Id Dr Mercola's opinion trustworthy…it seems I ws into reading some of his stuff but then started getting daily 'spam' from him so not sure where I stand on his opionions.
http://www.anapsid.org/lyme/index.html

Astrid13

Yes, Roxie60. I fully understand. Every medication I tried made me worse, but I know now that it's because they were all the wrong meds. Lyme feeds on Steroid treatment and we all know that steroids are shelled out for inflammatory disorders. I never once had any type of improvement with medications until now. I was treated for Fibro and Narcolepsy, but the decline was strong and steady.

Most PCPs, most doctors, won't bat an eye at your lab results. They either do not know how to interpret them and simply look at the "negative" result. There is clinical significance in any band being represented. It was my first time to test with Igenex and I had two prior Lyme Screens using the Elisa and IgG, considered negative bc of CDC guidelines. I had the co-infection panel done, but those are better dxed by a specialist using symptom checklists.

Do me a favor…
Visit this website and print out the PDF of the entire list of symptoms. Highlight or notate all the symptoms you've had over the years. This will speak loudly to use and whether or not it could still be Lyme's. Yes, the longer you are infected, the antibodies that are produced continue to change and evolve. Our bodies actually may stop making certain antibodies and concede to the disease.
Check it out: http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html
Let me know how it goes!!

roxie60 November 19, 2013 at 7:13 pm
taniaaust1

Roxie, I notice on your genetic profile at bottom that you have CYP2D6 listed. Are you aware that that can affect your response to 25% of pharma drugs out there http://en.wikipedia.org/wiki/CYP2D6. You may want to look closer at your gene results to have a better idea of what drugs are more likely to cause you issues so you know better which to avoid so you can make better trial choises. I have CYP2D6 +- myself (3x) and have found that nearly all my bad drug reactions have been to one of those drugs.

I know when I was doing a lot of genetic research trying to understand why I was sick all the time I did try to understand the impact of this gene. One I know for sure I cant take is Codeine…learned that one the hard way and way before I got chronically ill. Still need to review the list and be sure I'm not given certain anibiotics, need to go backwards and see if I can recall when I had bad reactions what I was given and see f they are on the list. Thx @taniaaust1

Not sure I understand the substraits and their impact depending on allele …. I for sure have trubs with the opioids, all of them in that list as soon as they are mentioned I just want to turn and run the other direction. There is a lot of SSRI on the list but still trying to be familiar enough with drugs to identify the antibiotics I might have probs with. Dont want to take antibiotics to treat Lyme beastie (if I have Lyme) and not be sure my negative reaction is due to Lyme beasties dying off or me reacting to the meds…I should have been a doctor, I think I would have saved money in the long run….it was however not my area of interest….now look at me…should have started back then since I have had to learn at least I'm assuming a couple of years worth of medical education

Astrid13 November 19, 2013 at 8:26 pm

Roxie60,
I've actually not read a lot of Mercola's works. The master symptom list I found is also based on Burrascano's which I find to be a very trustworthy physician and professional. By no means am I suggesting that everyone with a mysterious chronic illness has Lymes or another tick-borne disease. I simply want everyone to consider every possible condition that could be responsible so the healing can begin and the suffering and pain be minimized:) That's it!!
It is no secret that Chronic Lyme disease is under diagnosed and extremely controversial. I left no stone unturned but it took my entire adult life thus far seeking, searching, and praying for answers.
The main purpose sharing my story and life is to help spread awareness and I hope to support and guide others :)

roxie60 November 19, 2013 at 8:33 pm
Astrid13

Roxie60,
I've actually not read a lot of Mercola's works. The master symptom list I found is also based on Burrascano's which I find to be a very trustworthy physician and professional. By no means am I suggesting that everyone with a mysterious chronic illness has Lymes or another tick-borne disease. I simply want everyone to consider every possible condition that could be responsible so the healing can begin and the suffering and pain be minimized:) That's it!!
It is no secret that Chronic Lyme disease is under diagnosed and extremely controversial. I left no stone unturned but it took my entire adult life thus far seeking, searching, and praying for answers.
The main purpose sharing my story and life is to help spread awareness and I hope to support and guide others :)

That is what most of us here try to do. I just really dont know where I stand on Mercola, much of what I have read of his seems plausible but then when it turns into a hard sell I start to get skeptical. This was by no means any refelction on you or your posts just me curious about what others thought of the integrity of Mercola. I also in just a short time of researching lyme have respect for Burrascano, seems a leader and one who cares for his patients and others suffering with Lyme or trying to determine if they have lyme and he sees the value of trying to educate doctors, the first line of defense and the place many sick people hit a wall unfortunately.

Astrid13 November 19, 2013 at 9:18 pm

Right, you have Burrascano pegged as far as I'm concerned Extremely knowledgeable and he has dedicated the majority of his career to the topic of Lyme and educating other doctors. I really haven't relied on Mercola much to my recollection, so I want to look over the link you shared. Remind me on whether or not you've watched "Under Our Skin?"

From what I watched or read, this is by far the most informative, convincing and compelling argument that I've encountered. I've watched it numerous times and learn more every time.
I'm sure you have with all the time you've spent learning about about LD.
Are you more confused than ever? I'm so sorry, I know how exhausting the pursuit is!!

roxie60

That is what most of us here try to do. I just really dont know where I stand on Mercola, much of what I have read of his seems plausible but then when it turns into a hard sell I start to get skeptical. This was by no means any refelction on you or your posts just me curious about what others thought of the integrity of Mercola. I also in just a short time of researching lyme have respect for Burrascano, seems a leader and one who cares for his patients and others suffering with Lyme or trying to determine if they have lyme and he sees the value of trying to educate doctors, the first line of defense and the place many sick people hit a wall unfortunately.

JT1024 November 19, 2013 at 9:48 pm

I am extremely limited with time and being able to function. This thread intrigued me since I attend a Lyme Symposium at Massachusetts General Hospital (MGH) , Boston, MA on November 9th.

Numerous Lyme researchers and physicians presented and it was a major coup given that Dr. Allen Steere heads up the Lyme program at MGH. Insurance companies have used guidelines authored by Dr. Steere to prevent patients from receiving long term antibiotics so many people have spent many thousands of dollars (10 – 100+) in some families due to persistent Lyme symptoms after the "standard" 28 days.

The doctor that coordinated the event suffered from Lyme Neuroborelliosis. She suffered the same dismissal from any physicians so it was an eye opener for her. She was a physician working for a top medical organization yet she was given the same treatment so many of us are. "It is all in your head".

She wrote a "Manifesto" to her colleagues because she felt if she, who was fortunate to have the medical education, two physicians that would help her without charging and a third that took insurance, could not have afforded the treatment and went through numerous physicians that could or would not help, what happens to everyone else?

Here is her "Manifesto": http://www.zubcevik.com/2013/05/20/lyme-disease-manifesto-for-my-dear-colleagues/

I wish I could write more.. Not doing well at all but look forward to finally making an appointment in Boston for help.

roxie60 November 20, 2013 at 12:27 am

I reviewed the master symp list and highlighted ones I have or have had thru the years. always a moving target except for a few constant ones. really tired will try o elaborate later

Astrid13 November 20, 2013 at 8:36 am
JT1024

I am extremely limited with time and being able to function. This thread intrigued me since I attend a Lyme Symposium at Massachusetts General Hospital (MGH) , Boston, MA on November 9th.

Numerous Lyme researchers and physicians presented and it was a major coup given that Dr. Allen Steere heads up the Lyme program at MGH. Insurance companies have used guidelines authored by Dr. Steere to prevent patients from receiving long term antibiotics so many people have spent many thousands of dollars (10 – 100+) in some families due to persistent Lyme symptoms after the "standard" 28 days.

The doctor that coordinated the event suffered from Lyme Neuroborelliosis. She suffered the same dismissal from any physicians so it was an eye opener for her. She was a physician working for a top medical organization yet she was given the same treatment so many of us are. "It is all in your head".

She wrote a "Manifesto" to her colleagues because she felt if she, who was fortunate to have the medical education, two physicians that would help her without charging and a third that took insurance, could not have afforded the treatment and went through numerous physicians that could or would not help, what happens to everyone else?

Here is her "Manifesto": http://www.zubcevik.com/2013/05/20/lyme-disease-manifesto-for-my-dear-colleagues/

I wish I could write more.. Not doing well at all but look forward to finally making an appointment in Boston for help.

Thank you!! I can't wait to read the manifesto and hooray!!! Sometimes it takes a physician getting sick or a politician, someone with more credibility than the rest of us that "don't look sick" and "it's all in our heads."
Please keep me posted, I'd love to hear about your voyage. Best of luck and take care!!
Xoxo

roxie60 November 20, 2013 at 9:38 am

Anyone do the skin test for Lyme? How does that work?

The more I read about testing the more it looks like some of these tests might not be worth the added ex;pense. http://www.anapsid.org/lyme/teststudy.html

Astrid13 November 20, 2013 at 2:54 pm
roxie60

Anyone do the skin test for Lyme? How does that work?

The more I read about testing the more it looks like some of these tests might not be worth the added ex;pense. http://www.anapsid.org/lyme/teststudy.html

I've not done it, but there is some value in spinal fluid in some cases. After years of searching, for me, it was like the Heavens opened and the movie was literally dropped in my lap. From there, it was all super clear.

roxie60 November 20, 2013 at 5:51 pm

Just back from doc -in-the-box and another sinus infection. Tried to let my body overcome the infection but my counselor reminded me that I have had '0' recoveries from sinus infections over the past years so I gave in and went to doctor cause I'm tired of the added discomfort and cough.

I have been given Biaxin (generic. never had this one before). Doctor made and interesting comment that got my attention. He said mycoplasmas are primary cause of acute sinus infections. First time in all these decades of sinus infections that a doctor ever mentioned a cause. It only got my attention because of all the Lyme research I have been doing this past month. Isnt mycoplasma a known co-infection of Lyme (is this the reason for multiple recurring sinus infections for years??). He made it clear he was not diagnosing me with mycoplasma since it is hard to test for (<50% chance of positive). Just thought it interesting after all these years and now when I am just starting to learn and have now heard of mycoplasma.

Also warned aboout the diarhea as a side effect of Biaxin,,,, no biggey already have that going on-yippee.

Astrid13 November 20, 2013 at 9:34 pm
roxie60

Just back from doc -in-the-box and another sinus infection. Tried to let my body overcome the infection but my counselor reminded me that I have had '0' recoveries from sinus infections over the past years so I gave in and went to doctor cause I'm tired of the added discomfort and cough.

I have been given Biaxin (generic. never had this one before). Doctor made and interesting comment that got my attention. He said mycoplasmas are primary cause of acute sinus infections. First time in all these decades of sinus infections that a doctor ever mentioned a cause. It only got my attention because of all the Lyme research I have been doing this past month. Isnt mycoplasma a known co-infection of Lyme (is this the reason for multiple recurring sinus infections for years??). He made it clear he was not diagnosing me with mycoplasma since it is hard to test for (<50% chance of positive). Just thought it interesting after all these years and now when I am just starting to learn and have now heard of mycoplasma.

Also warned aboout the diarhea as a side effect of Biaxin,,,, no biggey already have that going on-yippee.

Yes, it is a known co-infection. Biaxin is readily used to treat Lyme. I wonder what kind of reaction you will have to it? What kind of reactions do you have to other abx that you aren't able to tolerate? I just wonder about the herx vs intolerance. The last visit to my LLMD 3 weeks ago, I took a long lost friend that has been terribly ill her entire life. She's had 14 miscarriages, an emergency C-section at 30 years old, more surgeries than she can count, and at one point was given a lethal dose of some medication just to save her life. She is so sick, she is freezing all the time, can't walk standing up straight, struggles with stairs, etc. She is 35 years old and mostly bedridden. Through Igenex, she not only tested positive, she tested CDC positive! We grew up about 5 miles apart. She is lucky to be and I'm so lucky to have reconnected with her. Point being, I know you want more confirmation before you proceed, but try your best to get in with a LLMD even if there's a substantial waiting period. They understand it best and can give you every bit of reassurance you need. I'm sorry you have a sinus infection :( I hope it clears up soon!!

Valentijn November 21, 2013 at 4:18 am
roxie60

Also warned aboout the diarhea as a side effect of Biaxin,,,, no biggey already have that going on-yippee.

So now your diarrhea has diarrhea! :thumbsup:

JT1024 November 21, 2013 at 3:58 pm

Re sinus infections… I've had many and rarely feel completely healed. I think biofilms are really causing havoc in a lot of us. Years of prescription antibiotics haven't helped us either.

Step 3 in Dr. Ritchie Shoemaker's Protocol calls for the "eradication of multiply antibiotic resistant coagulase negative staphylococcus (MARCoNS) from the nasopharynx, if present. These bacteria form a biofilm making it hard for many antibiotics to penetrate, sheltering the bacteria. Further, as their name implies, they are resistant to at least two classes of antibiotics. MARCoNS rarely exist if a patient has a normal MSH (melanocyte stimulating hormone), but normal MSH is unusual in CIRS (Chronic Inflammatory Response Syndrome) patients. MARCoNS make hemolysins which cleaves MSH rendering it ineffective. Inadequate treatment of MARCoNS will render CSM therapy impotent, perhaps because of the continued assault on MSH. To treat MARCoNS, a combination of therapies is used. Rifampin, a powerful but rarely used oral antibiotic is a mainstay. It is able to penetrate the biofilm and get to the “bugs”. I use 300 mg, 2 tabs daily for 30 days for adults and 10-20 mg/kg/day for children. Also used, in combination with rifampin, is BEG spray, an acronym for Bactroban (mupirocin), EDTA and gentamicin. The EDTA dissolves the biofilm clearing the way for a direct attack by the topical antibiotics. Two sprays 2-3 times a day for 30 days usually do the trick. For children, I use 1 spray twice a day, alternating nares. Start the rifampin and BEG spray on the same day to discourage new resistance emergence."

Link to additional information is here: http://www.survivingmold.com/docs/McMahon_11_Step_Biotoxin_Elimination_Pathway_Essay.pdf
and here: http://www.betterhealthguy.com/physician-s-round-table-2012

JT1024 November 21, 2013 at 4:09 pm
Astrid13

The last visit to my LLMD 3 weeks ago, I took a long lost friend that has been terribly ill her entire life. She's had 14 miscarriages, an emergency C-section at 30 years old, more surgeries than she can count, and at one point was given a lethal dose of some medication just to save her life. She is so sick, she is freezing all the time, can't walk standing up straight, struggles with stairs, etc. She is 35 years old and mostly bedridden. Through Igenex, she not only tested positive, she tested CDC positive!

I am reading Dr. Richard Horowitz's book "Why Can't I Get Better" right now. In the book, Dr. Horowitz describes a very ill patient that had several miscarriages. They were able to find Borrellia burgdorferi in the placenta and fetus by PCR testing. After further aggressive treatment, the patient became pregnant again and was able to deliver a healthy newborn.

Astrid13 November 22, 2013 at 2:14 pm
JT1024
Astrid13

The last visit to my LLMD 3 weeks ago, I took a long lost friend that has been terribly ill her entire life. She's had 14 miscarriages, an emergency C-section at 30 years old, more surgeries than she can count, and at one point was given a lethal dose of some medication just to save her life. She is so sick, she is freezing all the time, can't walk standing up straight, struggles with stairs, etc. She is 35 years old and mostly bedridden. Through Igenex, she not only tested positive, she tested CDC positive!

I am reading Dr. Richard Horowitz's book "Why Can't I Get Better" right now. In the book, Dr. Horowitz describes a very ill patient that had several miscarriages. They were able to find Borrellia burgdorferi in the placenta and fetus by PCR testing. After further aggressive treatment, the patient became pregnant again and was able to deliver a healthy newborn.

Yes, I need to add that book to my reading list. Reading is quite a challenge though. Either the words jump off the page or the material doesn't stick to my infected brain. All in due time, I presume, right? Any other advice that stands out to you that we could all benefit from?

vamah November 22, 2013 at 2:54 pm

I read an excerpt of the Horowitz book and took the lyme likelyhoood test he has. I scored 76, which is well over the threshold for serious concern. Don't know much about him though. Is his work considered good among lyme literate docs?

JT1024 November 22, 2013 at 10:34 pm
vamah

I read an excerpt of the Horowitz book and took the lyme likelyhoood test he has. I scored 76, which is well over the threshold for serious concern. Don't know much about him though. Is his work considered good among lyme literate docs?

IMHO, Yes he is. There are several physicians that I follow and while they don't always prescribe the same treatment, they seem to acknowledge fundamentals. Dr. Ritchie Shoemaker of mold fame has significant documentation and treatment success. Others following other protocols also saw some success.

So many options, too little time for me to be able to evaluate. Hope I can do bettter in the future.

Astrid13 November 23, 2013 at 9:27 am
vamah

I read an excerpt of the Horowitz book and took the lyme likelyhoood test he has. I scored 76, which is well over the threshold for serious concern. Don't know much about him though. Is his work considered good among lyme literate docs?

Is there someway to post a copy or link to the Lyme likelihood test? That is interesting to me and although I've been confirmed through testing, I think this could still be valuable to me and especially to others that are on the fence about believing a clinical diagnosis or whether or not to shell out the money for speciality testing through igenex.

Astrid13 November 23, 2013 at 9:29 am
JT1024

Re sinus infections… I've had many and rarely feel completely healed. I think biofilms are really causing havoc in a lot of us. Years of prescription antibiotics haven't helped us either.

Step 3 in Dr. Ritchie Shoemaker's Protocol calls for the "eradication of multiply antibiotic resistant coagulase negative staphylococcus (MARCoNS) from the nasopharynx, if present. These bacteria form a biofilm making it hard for many antibiotics to penetrate, sheltering the bacteria. Further, as their name implies, they are resistant to at least two classes of antibiotics. MARCoNS rarely exist if a patient has a normal MSH (melanocyte stimulating hormone), but normal MSH is unusual in CIRS (Chronic Inflammatory Response Syndrome) patients. MARCoNS make hemolysins which cleaves MSH rendering it ineffective. Inadequate treatment of MARCoNS will render CSM therapy impotent, perhaps because of the continued assault on MSH. To treat MARCoNS, a combination of therapies is used. Rifampin, a powerful but rarely used oral antibiotic is a mainstay. It is able to penetrate the biofilm and get to the “bugs”. I use 300 mg, 2 tabs daily for 30 days for adults and 10-20 mg/kg/day for children. Also used, in combination with rifampin, is BEG spray, an acronym for Bactroban (mupirocin), EDTA and gentamicin. The EDTA dissolves the biofilm clearing the way for a direct attack by the topical antibiotics. Two sprays 2-3 times a day for 30 days usually do the trick. For children, I use 1 spray twice a day, alternating nares. Start the rifampin and BEG spray on the same day to discourage new resistance emergence."

Link to additional information is here: http://www.survivingmold.com/docs/McMahon_11_Step_Biotoxin_Elimination_Pathway_Essay.pdf
and here: http://www.betterhealthguy.com/physician-s-round-table-2012

It took me this many days and re-reading your post to remember that my doc did a culture sample from my nostrils. I was negative, which was good, but it just made me realize how specific testing should be and how much is overlooked. You are an inspiration for being so knowledgable and resourceful. Thank you, thank you!!

vamah November 23, 2013 at 9:31 am
Astrid13

Is there someway to post a copy or link to the Lyme likelihood test? That is interesting to me and although I've been confirmed through testing, I think this could still be valuable to me and especially to others that are on the fence about believing a clinical diagnosis or whether or not to shell out the money for speciality testing through igenex.

I will try to remember where I found it and post the link

August59 November 24, 2013 at 1:33 am

(Sorry this was so long and if your having a bad time right now and reading abilities are limited you can start with the 3rd paragraph.)

I was at Walmart recently and was browsing the magazine section. I always like to flip through the "Discover" magazine and this month it has a big article by a researcher that has argued with the CDC that Lyme is present all over the USA. The CDC took for years to relent to the fact it wasn't anywhere but the Northeast, which I know is BS. Although I do not have Lyme as far as I know, I have 2 friends that has had it and one of them almost died because of his primary care physician (PCP). He finally found a LLMD in North Carolina that treated for 2 to 3 years before he became 90% functional, but he still has to watch his diet very close or he will get mild crashes. He went through a couple of times where we thought he was mostly healed, but he would do something to cause a major setback. The last one he felt like he knew what to do and after a couple of weeks he was unable to get out of bed and his wife rushed him to see Dr. Jemsek (who now has a clinic in Washington, D.C. because the North Carolina Board of Physicians literally ran him out of the state.)

My friend ended up with a shunt in his arm that led all the way to his heart and went through 3 to 4 different antibiotics over a course of a month or two with the shunt and then orally for another 6 months or so. That was his last really bad spell. My other friend was having the same problem with PCP and the first friend I was discussing knew my other friend, but had no idea he had Lymes. I asked him the friend that had seen Dr. Jemsek, to call my other friend to refer him and it wasn't long and he was making significant progress, which he was not doing with PCP.

Back to the Discover magazine and it has a really good article about how the author of the article contracted Lymes while studying the tick population in the South for Lymes carriers. The CDC still denies that Lymes exist in the Southern and Southeastern United States. The author also references a book, but I do not remember the name of it. I believe the whole article can be purchased online in a pdf format. Here is the link to the article in Discover, but it is not the full article.

http://discovermagazine.com/2013/dec/14-southern-gothic

One thing that I thought was a good idea is that they have developed an interactive map so that anyone with Lymes can identify with great accuracy where they know or believe they contracted Lymes. It also allows you to give a brief description of how the disease progressed with them personally. This may also give the NIH and CDC to at least start to think that Lymes does exist in the Southern and South Eastern region of the United States. This map is not for just the United States and anyone in the world can put their information on this map as there are many from Europe already on there.

roxie60 November 24, 2013 at 3:28 am

The map may come up just showing the USA, all you have to do is hit the '-' in upper left side a couple of times to see where people are reporting Lyme across the world.

BTW, there are three pages to this article, I missed that the first time I tried to read it.

Thank you so muchfor posting this. It is this kind of work that needs to get out there to help those with Lyme to be herad and helped. And it is recent. I still do not know if I have Lyme but I know the feeling of being dismissed for years having be dx with Fibro and CFIDS.

May those who are blind and in power start opening their eyes to see and their ears to hear. A lot of these researchers and doctors who have tried to keep Lyme pin holed are suffering from their own disease, arrogance and ego.

If I have Lyme I have tried to put a timeline in my mind and figure out when/where I might have got it. I have always been an outdoors gal so I could have got it anywhere (if I have it) but I particularly remember getting all kinds of bites when at DisneyWorld the first week of June in 2005. Florida was expereincing a drought (I would think it would be less likely to get bit during a drought and in Summer but I then remember my bites occured in the hotel bed and the room was very humid and less hot with the air on all the time, I dont recall getting bit while in the DW parks) and patrons were told they would not wash the sheets unless requested. I know we initially tried to b conscientious and go along with their conservation program. But I was waking up each morning with more and more red bites. I was told it was just bed bugs so not to worry thy would be healed soon. It took months to heal. Now I'm not saying this is for sure when and where I got Lyme (if I have it ;)) but things kinda went down hill health wise since then and more disabling each year.

I was also told frequently when seeking help from doctors in IL that you cant get Lyme in central IL, even in my non medical mind that made no sense to me (like the bugs just stop at the state line or they assumed I never left the state in this 21 century mobile society, talk about closed minded) but I still respected doctors opinions then so I believed them and did not push.

August59 November 24, 2013 at 6:01 pm

That article notes that almost every tick can be carrier of Lyme and yes it most definitely exist in IL. One thing that was interesting was that author was finding that in the different ticks they tested many had variants. Here is a quote from the author.

"Clark also tested his own blood, where he found traces of B. burgdorferi along with another distinct genospecies (a bacterial species separated by divergence of genes), Borrelia andersonii, usually found in rabbits."

I believe it goes on to say the many of the different tick species may be a carrier of B. burgdorferi and another variant specific to the tick species (might be wrong about this).

I might try to get that 60 page E-single called "Ticked – The battle over Lyme Disease in the South". There also seems to be an article noted – "Can a tick bite make you allergic to meat"

I need to be tested by a reputable lab as I went to a routine doctors visit and he found a nymph of some sort of species of tick that had attached right on top of my spine, but by the time he found it, the tick had died, so I have no way of knowing how long it had been attached to me. He went on about his business and didn't say anything about testing me and when I asked him about it, his response was it probably hasn't been on you long enough for the test to detect it and that it usually takes at least 2 weeks. Well, I didn't see him again for 6 months and I asked about it again and he decided to test me with the old CDC standard of "Elisa w/ Western Blot if positive". It was negative if course!

I hope you feel better soon and certainly hope you do not have Lymes, but if you do I hope you find out as soon as possible.

JT1024 November 24, 2013 at 10:51 pm

It is discouraging for all of us that we are not well and basic testing performed by our primary care doctors shows nothing. Even specialists are challenged. Most available testing for Lyme appears to be severely limited. This is my opinion after attending a Lyme Symposium at Massachusetts General Hospital November 9th.

Depending upon your predominant symptoms and course of illness (e.g. sudden onset/viral vs. gradual onset) we are sent to different specialists. These specialists have predetermined lenses through which they view/diagnosis most patients.

Unfortunately, we, like many other patients don't "fit" into predetermined little boxes. Doctors don't like admitting their limitations. For this reason, I'm grateful that the their are people like Dr. Judy Mikovits, Dr. Enlander, and Eric Schadt, PhD now working on ME/CFS.

While various governments apparently want nothing to do with chronic illnesses like ME/CFS/FM/GWI, private funding is apparently moving forward. Sad to see it but some seem to believe these illnesses won't effect them or their loved ones. This couldn't be farther from the truth. Pandora's box has been opened and it has been opened for quite some time.

Astrid13 November 26, 2013 at 10:08 pm
August59

(Sorry this was so long and if your having a bad time right now and reading abilities are limited you can start with the 3rd paragraph.)

I was at Walmart recently and was browsing the magazine section. I always like to flip through the "Discover" magazine and this month it has a big article by a researcher that has argued with the CDC that Lyme is present all over the USA. The CDC took for years to relent to the fact it wasn't anywhere but the Northeast, which I know is BS. Although I do not have Lyme as far as I know, I have 2 friends that has had it and one of them almost died because of his primary care physician (PCP). He finally found a LLMD in North Carolina that treated for 2 to 3 years before he became 90% functional, but he still has to watch his diet very close or he will get mild crashes. He went through a couple of times where we thought he was mostly healed, but he would do something to cause a major setback. The last one he felt like he knew what to do and after a couple of weeks he was unable to get out of bed and his wife rushed him to see Dr. Jemsek (who now has a clinic in Washington, D.C. because the North Carolina Board of Physicians literally ran him out of the state.)

My friend ended up with a shunt in his arm that led all the way to his heart and went through 3 to 4 different antibiotics over a course of a month or two with the shunt and then orally for another 6 months or so. That was his last really bad spell. My other friend was having the same problem with PCP and the first friend I was discussing knew my other friend, but had no idea he had Lymes. I asked him the friend that had seen Dr. Jemsek, to call my other friend to refer him and it wasn't long and he was making significant progress, which he was not doing with PCP.

Back to the Discover magazine and it has a really good article about how the author of the article contracted Lymes while studying the tick population in the South for Lymes carriers. The CDC still denies that Lymes exist in the Southern and Southeastern United States. The author also references a book, but I do not remember the name of it. I believe the whole article can be purchased online in a pdf format. Here is the link to the article in Discover, but it is not the full article.

http://discovermagazine.com/2013/dec/14-southern-gothic

One thing that I thought was a good idea is that they have developed an interactive map so that anyone with Lymes can identify with great accuracy where they know or believe they contracted Lymes. It also allows you to give a brief description of how the disease progressed with them personally. This may also give the NIH and CDC to at least start to think that Lymes does exist in the Southern and South Eastern region of the United States. This map is not for just the United States and anyone in the world can put their information on this map as there are many from Europe already on there.

Hello! Please post freely and never feel that you should apologize for sharing your thoughts, lengthy or brief :) I have just been a bit off the radar, but I am most grateful that you have read my entry and that you have information to share with us here. I intend on viewing the Discovery article. I'm afraid that we are just on the cusp on a huge revelation with Lyme's. I read something that said that Texas, where I live, has finally passed legislation for insurance companies to acknowledge and pay for chronic Lyme disease treatment so that is a huge feat for me and the South! The other states were all I'm the Northeast Region, where we all know the CDC believes to be endemic vs anything in the South because a researcher stated that Texas is not heavily wooded and consists of more "open land." Really, have you ever been to Texas? It is covered in dense, old trees, plenty of heavily wooded areas and ticks can be found year round on our pets. I remember as a young girl watching my father remove blood engorged ticks from my dogs. I pray that word spreads far, wide, and deep to help uncover the Truth behind the fastest growing epidemic in the World! Please continue to post and share any further information that you encounter!

Astrid13 November 26, 2013 at 10:11 pm
JT1024

It is discouraging for all of us that we are not well and basic testing performed by our primary care doctors shows nothing. Even specialists are challenged. Most available testing for Lyme appears to be severely limited. This is my opinion after attending a Lyme Symposium at Massachusetts General Hospital November 9th.

Depending upon your predominant symptoms and course of illness (e.g. sudden onset/viral vs. gradual onset) we are sent to different specialists. These specialists have predetermined lenses through which they view/diagnosis most patients.

Unfortunately, we, like many other patients don't "fit" into predetermined little boxes. Doctors don't like admitting their limitations. For this reason, I'm grateful that the their are people like Dr. Judy Mikovits, Dr. Enlander, and Eric Schadt, PhD now working on ME/CFS.

While various governments apparently want nothing to do with chronic illnesses like ME/CFS/FM/GWI, private funding is apparently moving forward. Sad to see it but some seem to believe these illnesses won't effect them or their loved ones. This couldn't be farther from the truth. Pandora's box has been opened and it has been opened for quite some time.

Amen! You are so corrected! It's just the tip of the iceberg!

Astrid13 November 26, 2013 at 10:17 pm
roxie60

The map may come up just showing the USA, all you have to do is hit the '-' in upper left side a couple of times to see where people are reporting Lyme across the world.

BTW, there are three pages to this article, I missed that the first time I tried to read it.

Thank you so muchfor posting this. It is this kind of work that needs to get out there to help those with Lyme to be herad and helped. And it is recent. I still do not know if I have Lyme but I know the feeling of being dismissed for years having be dx with Fibro and CFIDS.

May those who are blind and in power start opening their eyes to see and their ears to hear. A lot of these researchers and doctors who have tried to keep Lyme pin holed are suffering from their own disease, arrogance and ego.

If I have Lyme I have tried to put a timeline in my mind and figure out when/where I might have got it. I have always been an outdoors gal so I could have got it anywhere (if I have it) but I particularly remember getting all kinds of bites when at DisneyWorld the first week of June in 2005. Florida was expereincing a drought (I would think it would be less likely to get bit during a drought and in Summer but I then remember my bites occured in the hotel bed and the room was very humid and less hot with the air on all the time, I dont recall getting bit while in the DW parks) and patrons were told they would not wash the sheets unless requested. I know we initially tried to b conscientious and go along with their conservation program. But I was waking up each morning with more and more red bites. I was told it was just bed bugs so not to worry thy would be healed soon. It took months to heal. Now I'm not saying this is for sure when and where I got Lyme (if I have it ;)) but things kinda went down hill health wise since then and more disabling each year.

I was also told frequently when seeking help from doctors in IL that you cant get Lyme in central IL, even in my non medical mind that made no sense to me (like the bugs just stop at the state line or they assumed I never left the state in this 21 century mobile society, talk about closed minded) but I still respected doctors opinions then so I believed them and did not push.

Hey there!
I know you ave tried to backtrack to if you contracted Lyme, when you contracted Lyme, but my research has led me to believe that we can carry Lyme for a long time and it is in a less active, dormant phase. Given some life event, childbirth, surgery, increased stress, our bodies are working hard to recover and kinda catapults lyme into full force. Can you think of a time that you body may have been mor susceptible and given Lyme the green light to spread, attack and create more havoc? Think about that also.

Bed bugs shouldn't be taken lightly. I know you suspect they might be the culprit, but as August 59 mentioned, these bacterias are being found in a variety of different species.

I hope you find answers soon, so that you can transition to recovery phase :(
Sending lots of positive vibes your way!

Valentijn November 27, 2013 at 3:18 am
Astrid13

The other states were all I'm the Northeast Region, where we all know the CDC believes to be endemic vs anything in the South because a researcher stated that Texas is not heavily wooded and consists of more "open land." Really, have you ever been to Texas? It is covered in dense, old trees, plenty of heavily wooded areas and ticks can be found year round on our pets.

I lived in rural southern Oklahoma (less than an hour from the Texas border), and it was heavily wooded and covered in ticks. I had dozens of bites during the two years I lived there, as did the dogs and everyone else. I even stepped in a nest outside our trailer once and had dozens of the little buggers crawling up each leg :alien: It was like that everywhere out there.

Astrid13 November 27, 2013 at 7:48 am
Valentijn
Astrid13

The other states were all I'm the Northeast Region, where we all know the CDC believes to be endemic vs anything in the South because a researcher stated that Texas is not heavily wooded and consists of more "open land." Really, have you ever been to Texas? It is covered in dense, old trees, plenty of heavily wooded areas and ticks can be found year round on our pets.

I lived in rural southern Oklahoma (less than an hour from the Texas border), and it was heavily wooded and covered in ticks. I had dozens of bites during the two years I lived there, as did the dogs and everyone else. I even stepped in a nest outside our trailer once and had dozens of the little buggers crawling up each leg :alien: It was like that everywhere out there.

Have you ever been tested for Lymes?

Valentijn November 27, 2013 at 8:49 am
Astrid13

Have you ever been tested for Lymes?

A Western Blot from LabCorp came back completely negative on all bands, but then again they also said my ESR was normal, which hasn't been the case in the past 3 years from several different hospitals and clinics (including one that was done a week earlier).

More extensive testing was done by Dr de Meirleir a month ago, but I haven't gotten the results yet. Though rumor has it that I could email one of the labs for some results already.

Sushi November 27, 2013 at 1:46 pm
Valentijn

A Western Blot from LabCorp came back completely negative on all bands, but then again they also said my ESR was normal, which hasn't been the case in the past 3 years from several different hospitals and clinics (including one that was done a week earlier).

More extensive testing was done by Dr de Meirleir a month ago, but I haven't gotten the results yet. Though rumor has it that I could email one of the labs for some results already.

Infectolab will send the results to you by email–at least they did for me–and overnight!

Sushi

Valentijn November 27, 2013 at 2:32 pm
Sushi

Infectolab will send the results to you by email–at least they did for me–and overnight!

I went ahead and emailed this afternoon. So hopefully I'll have some more info tomorrow.

roxie60 November 27, 2013 at 3:02 pm

Well got call today from nurse, my pcp said no to consulting with a Lyme doctor to verify my results. Also said would not treat me for Lyme no matter waht doctor said since it is so controversial. But did acknowledge it was still possible that I had chronic Lyme. Feeling so much in limbo, very frustrated and down. Just want answers…why oes this have to be so damn hard to get help.

vamah November 27, 2013 at 7:39 pm
roxie60

Well got call today from nurse, my pcp said no to consulting with a Lyme doctor to verify my results. Also said would not treat me for Lyme no matter waht doctor said since it is so controversial. But did acknowledge it was still possible that I had chronic Lyme. Feeling so much in limbo, very frustrated and down. Just want answers…why oes this have to be so damn hard to get help.

Ugh. So sorry. Been there (not with lyme, but similar situation).

M_Dramatic November 27, 2013 at 9:56 pm

Just where I am right now too…(((hugs)))!!!

Sushi November 28, 2013 at 12:48 am
roxie60

Well got call today from nurse, my pcp said no to consulting with a Lyme doctor to verify my results. Also said would not treat me for Lyme no matter waht doctor said since it is so controversial. But did acknowledge it was still possible that I had chronic Lyme. Feeling so much in limbo, very frustrated and down. Just want answers…why oes this have to be so damn hard to get help.

Why not go to a Lyme specialist on your own rather than the consulting route?

Sushi

roxie60 November 28, 2013 at 6:43 pm
Sushi

Why not go to a Lyme specialist on your own rather than the consulting route?

Sushi

@Sushi I am trying to get into an LLMD in another state (the one closest to me) but they are currently backlogged and could not promise they could get me in until maybe February.

I then asked if the doctor would be willing to consult with my doctor and at least give me confidence in her Negative for Lyme diagnosis based on discussing the test results and my history. I was told yes she would be willing to consult. That is when I sent letter to my doc and asked her to do the consult. So for now I am in limbo until I can get in to see LLMD. Will call next week to see if I can send copies of my tests and short history (not sure how to make 8 years short) to the LLMD and see if she will give me some idea.

I am on the LLMDs contact list when they have an opening.

Astrid13 November 29, 2013 at 4:22 pm
M_Dramatic

Just where I am right now too…(((hugs)))!!!

Keep pushing! Doors will continue to slam, but it's worth the fight to have answers and direction so healing can begin ASAP!! You all can always contact Igenex Labs, get a test kit mailed directly to you.

You must find a physician to sign the orders and will need to pay in advance, but Igenex will give you CPT Codes to file with your insurance for reimbursement. The results will go directly to your doctor and you can obtain them from them, but at least that part is covered when you finally get in to your LLMD and that's one less step in the waiting game.

Results come back in 14-16 days. You will need to order test 6050 and CD57. Many of the coinfections can be dxed with clinical checklists. It is the most amazing feelings to finally have answers and direction. Knowing is half the battle!!

Also, walk in labs, like Any Lab Now will draw the blood as long as you have the lab kit and they will be shipped free of charge overnight. There is a $40 drawing fee, but when the results come to them, they may be willing to forward the results directly to you and wa-lah! Confirmation!!

The CD57 to 6050 will run you $450-550, but in my case that was a drop in the bucket compared to the thousands I've shelled out with no diagnosis! It's worth it if you believe you have been infected. No one, no region, no state is immune!! Best of luck! I'm here to help!!

M_Dramatic November 30, 2013 at 10:55 pm

Ok…..haven't really been following closely—would sure like to know what Dr shoemaker offers. I was exposed to mold 3 years ago not sure if still being exposed…is it possible that the affects linger? Am I crashing this thread w this question? Also I had blood flow Cytometery done CD4 etc and some were a little high, but no interlinked tests……I really need to talk to someone about this!!!

Astrid13 November 30, 2013 at 11:07 pm
M_Dramatic

Ok…..haven't really been following closely—would sure like to know what Dr shoemaker offers. I was exposed to mold 3 years ago not sure if still being exposed…is it possible that the affects linger? Am I crashing this thread w this question? Also I had blood flow Cytometery done CD4 etc and some were a little high, but no interlinked tests……I really need to talk to someone about this!!!

So far, what diagnosis have you received and what are your worst symptoms?

M_Dramatic December 5, 2013 at 9:56 pm
Astrid13

So far, what diagnosis have you received and what are your worst symptoms?

Wow…well to make long story short for now-fatigue biggest symptom, all believe I have inflammation, IBS,minor pain, neorological issues incl eye pain, dizzy, etc!

anniekim December 6, 2013 at 9:36 am
roxie60

Thx, I did post my results here in another thread (I think it was the Lyme testing thread). Mine came back negative a few weeks ago but I had a few INDs which I have since learned should not be ignored especially if I have been sick with various symps for more than a year. I have been battling for about 8 years. So the theory as I understand it currently is I may not be producing enough antibodies for the bands to show up strong positive. You definitely lit up that IGenex test. Was that your first time testing with them? I did not do any of the co-infections tests.

My CD57 NK abs was 55.
My IFA was <40 and the PCRs were negative.
I was '+' on IgM 83/93 and IND for 31,34, 41 and I was IgG '+' for 41
(as a result from these tests above my pcp says I dont have Lyme just general immune suppresion)

Trying to decide on a Lyme doctor to see. The couple I am looking at have backlogs and are not seeing new patients for 4-6 months. One did agree to consult with my pcp and review my CDC and IGenex results which I thought was nice. I am just wanting a more definitive diagnosis if possible, like a test that confirms before putting myself thru more drugs and supplements.

Guess I am just jaded from so many years of not really making any progress.

I have actually become fearful of taking drugs and supplements since I have had so many reactions over the years.

I did testing with infectolab in Germany. I had two indeterminate results on igm and no igg. My cd57 was low also, was 57. Infectolab claim this suggests Neuro borrelia infection. I am not so sure. In my internet searches cd57 may also indicate not only Lyme but virus's and other things that they are still not sure of.

For the time being I don't feel my results or symptoms (though I am bedridden) scream Lyme and so, rightly or wrongly, am not pursuing treatment. Obviously, treating Lyme when you definitely have it can help enormously but I have also heard of people who have treated a possible Lyme diagnosis with long term abx and have been made worse. dr Jamie deckoff jones who writes an excellent blog and has been ill with ME for years used abx for many years and believe it made her worse. She writes about it on her blog x-rx. If you scroll down to the second blog post on this log she talks about her thoughts on Lyme http://www.x-rx.net/blog/2010/05. I

I do stress for some people, as Astrid's story illustrates, treating Lyme infection is incredibly beneficial and important but there do seem some people may treat when they don't have active Lyme. Also I think deckoff Jones suggests if you respond to abx at the start of the course of treatment this further shows treating Lyme is a good idea but it may not be a good idea to continue taking abx when you are having no response or a prolonged herx which she believes may not be a herx but a cytokine flare

anniekim December 6, 2013 at 9:43 am
snowathlete

Thanks for telling your story!
I discovered I have Bart and Lyme this year!

May I ask did KDM test you for this and if so did he use infectolab? Thanks

anniekim December 6, 2013 at 9:45 am
justy

Thanks for writing about your experiences here and especially for alerting us to the film – I just watched it this afternoon and it was very good. Here in the UK we have the same problem with any GP who treats CFS/M.E patients with real treatements being hauled up in front of the GMC – some have had special measures imposed and are continually harassed by the medical authorities.

The film was really pretty scary as here in the uk we don't even have any testing offered at all, and no LLD's that i'm aware of. It makes me woder if there is any point in faffing about the edges with diet, adrenals, supplements ect when it's very possible I could have some kind of tick borne vector.

I spent a lot of time hanging out in fields as a teenager on the fringes of London and camping out in the grass. Now we live in an area with a LOT of ticks, as my dog keeps coming in with them all the time. Over the summer we removed 35 in one sitting from his head and ears. Strangely though our vet says there is no LYme disease here – how can he be sure of that? How do we know the dog is even safe from the tick bites?

It's got me wondering about whether it's possible to get good testing here in the UK such as that done by KDM in Brussels.

all the best,
Justy.

Justy, I live in the UK and did Lyme tests privately through infectolab in Germany. You don't need a GP's referral but the tests aren't cheap. Unfortunately, my results were indeterminate so I am still not clear as to whether I have it or not and for the time being am not pursuing treatment.

snowathlete December 6, 2013 at 11:53 am
anniekim

May I ask did KDM test you for this and if so did he use infectolab? Thanks

Yes. I was negative by PCR and serology showed only band 41 for spirochettes. I then had an Infectolabs test which was a weak positive. KDM said it was positive – I hear that results are low if you have been sick a long time as you don't get much of an immune response. If treatment works then over time the result actually gets higher at first. I think Bartonella is more of a problem for me than Lyme though.

Sushi December 6, 2013 at 1:21 pm

@anniekim

When you mentioned Infectolab, did you have the LTT test? It seems to be pretty accurate unless you have low lymphocytes. It is not an antibody test.

Best,
Sushi

anniekim December 6, 2013 at 5:00 pm
Sushi

@anniekim

When you mentioned Infectolab, did you have the LTT test? It seems to be pretty accurate unless you have low lymphocytes. It is not an antibody test.

Best,
Sushi

Hi Sushi,

Yes, I did the LTT test which came out negative, which further made me lean to thinking I don't have an active infection, although I am not totally sure. I read somewhere the LTT has 75% sensitivity so don't know whether this is true. Infectolab said a negative LTT doesn't rule out Lyme but I I think it adds to the possibility of not having it with only two indeterminate igm antibodies,

Excuse my ignorance when you say low lymphocytes, is this referring to the cd57 test or something else? Thanks

anniekim December 6, 2013 at 5:01 pm
snowathlete

Yes. I was negative by PCR and serology showed only band 41 for spirochettes. I then had an Infectolabs test which was a weak positive. KDM said it was positive – I hear that results are low if you have been sick a long time as you don't get much of an immune response. If treatment works then over time the result actually gets higher at first. I think Bartonella is more of a problem for me than Lyme though.

Thanks Snowathlete. When you say only a weak positive with infectolab do you mean just one indeterminate band or perhaps a few indeterminate? I hear you though that you think bartonella may be more your problem

anniekim December 6, 2013 at 5:06 pm
justy

Thanks for writing about your experiences here and especially for alerting us to the film – I just watched it this afternoon and it was very good. Here in the UK we have the same problem with any GP who treats CFS/M.E patients with real treatements being hauled up in front of the GMC – some have had special measures imposed and are continually harassed by the medical authorities.

The film was really pretty scary as here in the uk we don't even have any testing offered at all, and no LLD's that i'm aware of. It makes me woder if there is any point in faffing about the edges with diet, adrenals, supplements ect when it's very possible I could have some kind of tick borne vector.

I spent a lot of time hanging out in fields as a teenager on the fringes of London and camping out in the grass. Now we live in an area with a LOT of ticks, as my dog keeps coming in with them all the time. Over the summer we removed 35 in one sitting from his head and ears. Strangely though our vet says there is no LYme disease here – how can he be sure of that? How do we know the dog is even safe from the tick bites?

It's got me wondering about whether it's possible to get good testing here in the UK such as that done by KDM in Brussels.

all the best,
Justy.

Justy, I live in the uk and sent my blood to infectooab in Germany. You don't need a GP referral but not cheap unfortunately

snowathlete December 6, 2013 at 6:53 pm
anniekim

Thanks Snowathlete. When you say only a weak positive with infectolab do you mean just one indeterminate band or perhaps a few indeterminate? I hear you though that you think bartonella may be more your problem

hi anniekim, The results of my Elispot LTT test were:
Borrelia burgd. Fully Antigen (+): 2
Borrelia OSP-Mix (OSPA/OSPC/DbpA): 1
Borrelia LFA-1: 0
"The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for a
borderline/very weak actual cellular activity against Borrelia burgdorferi."

Best
Joel

anniekim December 6, 2013 at 7:32 pm
snowathlete

hi anniekim, The results of my Elispot LTT test were:
Borrelia burgd. Fully Antigen (+): 2
Borrelia OSP-Mix (OSPA/OSPC/DbpA): 1
Borrelia LFA-1: 0
"The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for a
borderline/very weak actual cellular activity against Borrelia burgdorferi."

Best
Joel

Thanks Joel, I'm clear now that you did the LTT elispot test, not antibodies.

I did the LTT and came out negative, 1, 0, 0

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