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32 comments

{ 32 comments… read them below or add one }

Geoffrey Levens, L.Ac. May 5, 2012 at 5:58 am

I am an acupuncturist and health coach and recently found your site. I am very curious about a couple ingredients in the supplements recommended by Dr. Van Konynenburg for treating Methylation Cycle Block. As I understand it, cyanocobalamin is not biologically active and must be converted to methylcobalamin in the body. Also, ingesting the cyano- form of B-12 is much more likely to cause side effects compared to the readily available methy- form supplement. I would like to know why a B-12 supplement is used that has the cyano- form? Also, folic acid must be converted in the body, in fact methylated. And there is some research indicating the possibility of increased cancer risk from taking the common folic acid supplements. Why is this in the recommended supplements rather than using something that only has methylated forms of folate?

Thank you,
Geoffrey Levens, L.Ac.

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Hi Cort May 18, 2012 at 5:35 am

Hi Cort.
I am subscribed to the Newsletter but do not get Bringing the Heat or the Buzz. Are there different places to subscribe?

Corinne told me about the donation suggestion, and you are completely right. This site deserves it. I am figuring out the best way to do that. Because I am writing a book, it is taking the funds quickly, but I will be sending at something your way. Thanks for the fine work.

Also I wanted to mention that on the Survey this month one question would not allow the three choices. I would only receive one (I thought you might want to know).

Also I hope one day we can have a talk about some of the articles in my book and any contributions or participation you may be able to muster.
Thanks.
Best,
Valerie Free

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Cort May 19, 2012 at 4:08 am

Thanks Valerie,

I can subscribe you to the blog…(we had trouble getting you on the newsletter :) , as I remember…our systems are a bit scattered and disorganized at the moment). Thanks for the support, we really appreciate it…

I know I’m hard to get in touch with but look forward to talking about the book.

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Leopardtail January 18, 2014 at 12:37 pm

The word Geschäft should be used not Speichern re the German amazon store.
The first means shop
The second means save

monica stelea June 24, 2012 at 9:37 pm

hi ,
please give me an advise how i can make an appoiment to see dr Neil Nathan ?

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Cort August 2, 2012 at 10:19 am

Hi Monica, check out this website http://www.gordonmedical.com/neil_nathan.html Good luck!

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nancy bennett July 4, 2012 at 10:10 pm

Hi Cort,
I have been very sick for about 3-4 years now and NO ONE can tell me what’s wrong with me. The only thing thay do know is that I have had recurrent infectious mononucleosis 7 times since 1987. I am 42 years old and have all or almost all the symptoms for cfs. I have gone from 145lbs to (as of today) 212lbs. and I don’t eat enough to warrant the weight. I feel hoorible most of the time (severely fatigued, muscle and joint pain espeacially neck, shoulders and left arm, sick to my stomach,bloated,headaches,etc…). I need help despeartely and don’t know where to turn. I live in Clearwater Fl., and I am at a loss with all doctors with whom I come in contact with.
Please help!!

Sincerely,

Nancy Bennett

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Cort July 5, 2012 at 4:43 am

So sorry to hear this Nancy!…You might try registering for the Phoenix Rising Forums (forums.phoenixrising.me) and telling your story in the Introduction section and other areas of the Forums. Dr. Klimas is a well known doctor in Florida – I don’t know if she’s near you. Good luck!

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Carol A Jones July 17, 2012 at 1:46 pm

I have been reading a ‘Dr. Lerner’s’ research into CFS and possible related disorders. I am very interested, but always cautious. Do you happen to have his full name so I may look up his credentials. Thank you for your assistance in advance.

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Lynn D August 1, 2012 at 5:23 pm

HI,

While online trying to track down and few things to increase health, kept ending
on this site. Some of my searches were to do with the high folic acid on blood test results.(3 x’s over top range. They also did my B12 but that was “fine” at 900′s . Glad the next Dr prescribed methyul B12 as then had much better with doing paperwork while taking care of mother.
Dont think have CFS/ME, though a Dr said had CFS or Fibro about 15 yrs ago. Decided didnt want something that would be forever, so worked on listening to self and …..What we found was a CO leak in house.
Currently , it eyes, concentration and changes, like if take bus to get groceries might be ok next day or in bed. Am on SCD diet and that has been most helful .
So what are these protocols see listed? Is there a glossery someplace? Such as SMP and ABP.
or a Simple protocol. About 10 yrs ago tried folic acid and got large sores on tongue so afreaid of it and wondered if it might be related to this talk on one of your pages about paradoxicol deficiency. Funny thing about the B12 injections , became addicted and had to increase.
But noticed they caused weight loss (didnt need), and felt like start to get a cold or something.
Had to stop when , sometimes I get skin that is very tender and sensitive as though sandpapered , even tendons hurt, it goes away when eat,sleep better.
Currently have a liquid M B12 from VRP.
Thanks for the information
Lynn D
mostly I have a different herb tea each morning and make meals from “scratch”.no grains…

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Cort August 2, 2012 at 10:18 am

Hi Lynn, check out the Phoenix Rising Forums…there are forums on detoxification and methlylation and B-12 stuff plus alot of other information there. (forums.phoenixrising.me) Good luck!

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Brenda Elliott August 2, 2012 at 11:17 am

Hi Lynn,

I have had CFS for eight years. Mine started after having a CO2 leak in my house too and then using a propane gas heater for one night after having my furnace shut off due to high leakage. I ended up in the hospital on oxygen and from that point forward I suffered from rapid vision changes, a pulled molar that developed a dry socket and wouldn’t heal with antibiotics, chronic sinusitus, fatigue, etc. Nine months later I fell into a deep sleep, developed severe heart issues, thus the beginning of this eight years of CFS. My suggestion is to pace yourself, bring a copy of the new primer for physicians to treat us, (was posted here on Phx Rsg just recently) rest, rest, rest in between all short activities, and majorly work on keeping your stress level minimal. Best of blessings to you…

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Lynne Hanson August 2, 2012 at 7:48 pm

Impressive website, loads of information! Since I was destined to be resting today, I was browsing through your treatment main page. Most of those links seem to go to your Google search page (Assessing your doctor, educating your doctor, etc.).
Thank you for helping me feel not quite so frustrated about this illness. :)

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Cort August 18, 2012 at 9:43 am

Thanks Lynne – we’re working on that; we moved over from another website and we’re still piecing things together.

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Lynn D August 7, 2012 at 6:19 am

Brenda , Thanks for your reply. I decided dont have CFS, but posibly fighting something or
Yes, do pace self. Do pretty well but would like to do yardwork (some nodlules in hands)
Actually had some days with warm hands (is in 80′s so that could be it).
I believe we are able to heal and every morning look at what is impportant to me and a goal.

Where do I find the “new primer for physicians”?
Also found one Phoenix page on folate decifiency reactions and cant find it again.
Is that what I have, is there symptoms or tests. My blood test showed 3x’s top limit for folate and wondered what meant. and why need B12 if blood test shows enough.
Tried to find what SMP and ABP are, but search doesnt work.
Thanks again
Lynn D

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Jenifer C. August 18, 2012 at 10:34 am

Hi Cort,

As part of the “Community Rising” project, it might be beneficial to also include a section for Disability Attorney reviews; both Private Disability Attorneys and Social Security Disability Attorneys. I would highly recommend Eddie Dabdoub at Wager Law in Miami for private disability claims. He clearly understands CFS/FM and is a phenomenal patient advocate. Thanks Cort, as always, for all you do!

Jenifer, Jupiter, FL

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Kay Jewell September 5, 2012 at 11:15 am

Hello. I wanted to introduce myself and my work. I am a mother of a child who got sick in 2003, diagnosed in 2006, who also developed POTS since then. We have been to many physicians and tried many things.

I finally put together my research and experience into a website that I hope will help provide information and a resource so people with CFS and POTS or NMH or cyclic vomiting, etc. don’t have to search for hours to find help.

Thank you for being here and helping – I hope The Orthostatic Intolerance Center can be as much service and help as you have been.

Namaste’
Kay E. Jewell, MD
Caregiver/Mother for CFS/POTS since 2003.
Physician – a lot longer – and – like the Energize bunny – still going strong!

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Ronalo Lopez September 18, 2012 at 5:18 pm

Greetings, I receive your newsletter and would love to vote for this Chase contest to help out. Is there any other way of voting besides using Facebook? I don’t FBook, Twit, …..ect.
Not my gig. Sorry. Good luck with the contest. Sincerely, Ronalo

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Helen W September 29, 2012 at 8:18 am

I entered a contest with Patchwork Road to benefit ME/FM Action Network. They emailed me to say they are looking for partners. Their premise is that shoppers can go to their site, then choose a nonprofit from a list to donate a portion of the profits to. I wanted to ask for your permission before I gave your name as a possible recipient. Would you be interested? Please email me if it sounds like it would be of benefit to you so can pass it on (and while you are there, vote for ME/FM Action?) ty http://www.patchworkroad.com/partnerships/

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barbara ephgrave March 11, 2013 at 4:33 am

My husband became ill following his involvement in a psychiatric study in 2001.
His symptoms were so bizarre that his GP did not know what was wrong with him or how to treat him.
I tried to identify the problem on the internet and quite by chance I came across some research published by a Canadian microbiologist and so I wrote to him.
He responded by telling me that my husband’s symptoms were those of a person who had been the subject of a biological warfare experiment.
He told me the tests to request from my husband’s GP to confirm this.
Unfortunately the test results came through 4 days after my husband’s death in 2008.
I have reported my husband’s death to the police as suspicious and Professor Garth Nicolson an American specialist in stealth pathogen research has kindly offered to assist the British police with their enquiries into my husband’s death.
If the case is proven this may well be the first successful prosecution of doctors engaging in this form of dangerous and destructive research.
acting for the good of humanity.

Barbara Ephgrave

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Cindy Downey March 21, 2013 at 12:20 pm

Hello Phoenix Rising,
Thank you very much for Carol Schmid’s excellent article. As a 25 year veteran of ME, I can relate to everything in her article. Before I make more comments about her article, I would like to note my suggestions for how to help our doctors: 1) keep yourself informed; try not to overwhelm yourself with the plethora of individual studies, however, the primers and overviews put out by well known physician/scientist groups summarize the current knowledge, and can be very helpful for both you, and your doctor; 2) find out who the specialists are in your province, state etc., and give this list to your doctor; these specialists are often listed with support and info/networking groups; even if you do not wish to see a specialist, perhaps another of your doctor’s patients may need to, and discussions with the specialist will help advance your doctor’s knowledge 3) use a recognized checklist from an expert source to describe your illness/symptoms to your doctor; and give him a blank copy to use with other ME patients; the diagnostic checklist on pages 12 and 13 of the 2012 Edition of the CFS/ME Primer for Clinical Practitioners by the International Association for CFS/ME is both a good way to capture your ongoing heatlh status, and an excellent educational tool for physicians who don’t have much ME knowledge. Your doctor may note that you have provided him/her with some reputable, scientific resource material, and may be more open to reading futher literature of this calibre. Brief summaries and overviews are best, as your doctor is inundated with information about many diseases; 4) Start a scholarship for ME medical training via a non-profit/charitable status group; the National ME/FM Action Network administers a scholarship in Dr. Alison Bested’s name. Dr. Bested’s patients in Ontario contributed funds for this scholarship. Dr. Bested is the new director for the Complex Chronic Diseases Clinic at the Vancouver Women’s Hospital in British Columbia. This Clinic is working with ME, FM and Chronic Lyme patients. Dr. Bested is also one of the authors for the 2012 edition of the IACFS/ME Primer I noted earlier.
May 12th is International ME Day. I would like to see Carol’s article in every newspaper in North America, if not globally! Public and physician awareness are still very sadly lacking despite this illness effecting millions around the world! I think her article would shed some light on the reality of ME for those who are really in the dark. I think it would be a good idea for many of us to write to our politicians, and news media in preparation for May 12th. Thank you very much for all your work in this area, and please continue this valuable service for the numerous effected individuals. Best regards, Cindy Downey

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Anthony Martello April 17, 2013 at 8:17 am

My daughter has MS. I read where a stress test may be a bad option for someone with CFS; do you know if the same may be true for someone with MS? Any information would be most appreciated.

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Beth Alderman May 6, 2013 at 9:35 pm

Hi there,
I am a former physician and medical researcher who has had ME/CFS/CFIDS-FM/Lyme since the 1980′s, with diagnosis in 1996. In the course of trying to create a cure through my new sevenfold system for healing and cure, I did some experiments on myself. The most telling one involved taking 1/4 cup of corn oil, which replicated all my symptoms. For a long time I accepted the explanation that this was an allergy, but my symptoms were those of neurotoxicity. I think that CFS may be due to biocide poisoning, and would appreciate knowing what others may experience when they are exposed to biocides in foods.
Thanks!

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Ms CJ Janzen June 1, 2013 at 11:23 am

Hi Everyone,

I am writing this email generally, so that it can be spread as far and wide as possible, as quickly as possible.

You may not be familiar with Karina Hansen’s plight.

A few of us, all who suffer from ME/CFS banded together to try to help from our beds.

I produced this video and received permission from the required people close to the situation to release it.

http://www.youtube.com/watch?v=Dk3e8IWj7M0

I am praying you will watch this and go to the Justice for Karina Hansen facebook page.

On our page in our ‘about’ section you will find a myriad of links explaining the known facts to date.

http://www.facebook.com/JusticeForKarinaHansen

Please consider signing one or all of the petitions, send Karina a postcard, “Like” our facebook page or show your support in other ways.

Karina needs your help….NOW!

Time is critical.

Sincerely,

Ms CJ Janzen

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wolf 10 June 7, 2013 at 12:13 am

I just read a concerning account by user named Jacque posted 5/25/2013 about symptoms subsequent to using Valcyte and Rituxan, within what time frame I’m uncertain but it sounds as if she may be suffering from a serious drug interaction according to what I found on Drugs.com. I just signed up and I either cannot or don’t know how to convey this information. I truly hope I’m mistaken.

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Lauren June 17, 2013 at 12:33 pm

Hi,

I wanted to recommend a very resourceful doctor who specializes in fibromyalgia and CFS–Jacob Teitelbaum, MD–and he knows these conditions as an insider. He contracted CFS while attending medical school and had to drop out for a year to recover. In the ensuing 30 years, he’s dedicated his career to finding effective treatment. He’s written several books on the topic, including his latest, “The Fatigue and Fibromyalgia Solution” (Avery Penguin, August 6). For more info, check out his website, http://www.vitality101.com and to preorder, http://www.vitality101.com/the-fibromyalgia-and-fatigue-solution.

Best,

Lauren

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Michelle Ponce July 6, 2013 at 7:07 pm

I am looking for a DR for Fibro and CFS. I am debilitated. bed ridden, but I like your opinion of treatment. Is there a doctor I can see of this caliber near Southern Ca area, LA County or Orange county. Thank you.

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Kina July 7, 2013 at 3:33 pm

Hi Michelle. If you join the forums, you can post your question there. You probably won’t get a response here.

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Julia Hugo Rachel November 4, 2013 at 1:17 am

Why are your comments closed after only 4 days on the “Death” article re: IOM contract?

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Kina November 4, 2013 at 5:49 am

Comments are not closed.

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Oriah March 20, 2014 at 10:32 am

I just want to say thank you. I was diagnosed with CFS in 1983/84, and I always find coming here and reading though forums or posts really gives me good grounded info. Unhappily good grounded info does not include a “cure” – but then, I’ve learned that promised cures are generally money making schemes (some perhaps well-intentioned.) What really strikes me is the sane discourse on possible symptoms and treatments. It can be a little overwhelming to read about so many suffering so much, but on the other hand, I love how folks really tend to stick to what they know/experience or have researched and minimize the moral or hypothetical meandering. All this is to say- thank you for the site. It reassures me that I am not crazy and helps me deal with the reality and explore possibilities when the energy is available, Oriah

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wilhelm March 28, 2014 at 8:59 am

Hi Cort and anyone else Reading this
Today I called the University Hospital in Bergen (Norway) to ask them when the big rituximab trial is starting. As you probably know this is a big study With 140 participants.

They just informed me that the trial will start in the end of May 2014, and now they are focus on find the right candidates. I think there were more than 900 volunteers that wants to participate, so that will take some time.
I was also told that they have everything they need. Finally it seems the trial will start! :)

wilhelm

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