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Finally...lyme (borelliosis) suspected..starting treatment

Discussion in 'Lyme Disease and Co-Infections' started by roxie60, Dec 14, 2013.

  1. roxie60

    roxie60 Senior Member

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    I got a call today from my pcp. A week ago she was firm she would not treat me for lyme but she finally agreed to review my test results and history with an LLMD I am trying to get into see. Well that consult apparently went so well my pcp was willing to start the treatment protocol recoed by LLMD until I can get in to see LLMD. What a pleasant and blessed turn around. My pcp was very impressed with the LLMD which made me feel even better about seeking out her care in my case.

    Apparently the LLMD concluded based on IGeneix test (and maybe CD57, not sure since not mentioned) that even though 31 and 34 bands were IND those are specific for lyme and therefore included in clinical conclusion. Starting last night I am suppose to take 3000mg per day of Amoxycillin. I have to shove down 168 pills over the next 4 weeks and then access how feeling, if feeling better then continue another 2 weeks then reaccess.

    I have mixed emotions, happy to finally have some confirmation from someone who treats lyme and scared about the longterm strong antibiotic use. Hoping for the best. Feeling at peace about moving forward with this treatment and feel for the first time in a long time God is in the midst of this nightmare and is really opening and closing the doors as needed for me to navigate the minefield.

    Annyone else using high dose Amoxy for long period? What kind of reactions might I expect? I'm going to take really strong probiotic as I'm taking the abx. Any other suggestions to help make the process not so physically upsetting?

    Wishing everyone answers and improved health!
    rosie26, snowathlete, maryb and 2 others like this.
  2. cigana

    cigana Senior Member

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    I'm glad to hear all that.
    When I first started taking high-dose amoxycillin (3g same as you) I felt practically cured. Unfortunately my doc was hounded out by the GMC and that did not continue. Now 2 years later 3g amoxy is no longer working for me. I hope it's still in time for you!
    maryb and roxie60 like this.
  3. Martial

    Martial Senior Member

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    I was on a pretty high dose of amoxy for ten days and then ceftin for another ten days.. It gave me digestion issues but not too much else, If you have lyme that penetrated the CNS system they usually treat it with IV antibiotics and something to hit into the CNS... Also another potential option if it is post treatment lyme disease is Helminithic worm therapy, far less risky and stops the auto immune response from previous lyme disease. This is if you have already been treated at some point for the lyme disease though.
  4. SOC

    SOC Moderator and Senior Member

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    @roxie60
    Congratulations on finding something treatable! Good luck with your abx treatment! Will the Lyme dx help with your employment/disability problems?
  5. roxie60

    roxie60 Senior Member

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    Had posted this on another thread but decided to repeat here, my brain just cant figure out best place to post today

    I was reading an article Rich V wrote about Lyme and glutathione depletion and cysteine. Can someone else read this and let me know what they think. Is this cysteine he is referring to homo-cysteine, having trouble remembering.

    Reason I am asking is I'm still trying to convince myself I have Lyme (or maybe I'm trying to believe I do not). This is the first time I have seen any commentary about the relationship to Lyme and coinfections and impact on methylation cycle, homo/cysteine, glutathione levels.

    http://www.lymeinfo.net/methylationblock.html
  6. roxie60

    roxie60 Senior Member

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    I've been taking Amoxy 3000mg/day for nearly 12 days (seems like much longer time). I want to say I'm feeling a bit better but afraid to be premature. I also have not had the ;herx' everyone talks about so now I am doubting wether I have Lyme (I am always doubting if I have it since my tests were not strong positive). At this point my tougue feels like it has a layer of metal on it , or just feels sore, not sure why. Tinnitus has been really bad some day and even some ear pain but also about eight weeks now of sinus issues so maybe related to that.
  7. Thinktank

    Thinktank Senior Member

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    Have you been tested for co-infections as well? KDM told me most people with borrelia also have one ore more co-infections.
    I've also just been diagnosed with chronic borrelia lyme and probably neuroborreliosis + co-infections. I've been prescribed a 12-weeks IV abx (rocephin) treatment to start with.
    I'm going to follow your thread, hope you will get better on the oral abx.
  8. roxie60

    roxie60 Senior Member

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    @Thinktank I really like your avatar. I say that to myself at least weekly!

    I have not been tested for co-infections yet. I am on a wait list to see an LLMD, soon I hope. I have had what I would call neurological symps over the last 7-8 years but what is weird is they come an go. They can range from severly debilitating to just mild to even no symp for a bit of time. Right now I am experiencing a symps low tide (for lack of better word right now) which means symps are fewer and less intense but I remember this time last year I felt a bit better for a few weeks then crashed. I have become gun shy about being hopeful so I remain cautiously optimistic.

    Yesterday I was down so determined to get out of the house for a couple of hours, felt pretty ill by the time I headed back home. Forgot how sensitive I was to colognes, and just stuff in the air around me I could not identify. Also sitting in a spot for extended period really hurt. My own fault I should have stayed home. Spent money I should not have. I'm just not myself anymore, dont recognize me.

    I am supppose to take the oral abx for 4-6 weeks if continue to feel better. What I cant seem to rid of is the sinus problems.

    I try to stay optimistic but I look around my home and it is in such disarray, I use to take pride in keeping my home kept up. I dont want to let this expereince beat me but I am so so tired of living with it. I have to remind myself it could be worse, I know others have it worse and I need to stop winging about it. Somedays are just harder when I reflect on everything lost the past 8 years.

    Let me know how you progress. If you are on IV then I can well imagine you are feeling very ill right now to opt for that approach. I wish you great success and quick improvement.
  9. roxie60

    roxie60 Senior Member

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    @SOC I'm not sure if it will help or harm. Given the goal is to limit their liability I would expect as soon as they hear I probalby have Lyme they will want to use the CDC or IDSA guidelines and ignore the possiblity of chronic Lyme and the ILADS guideline. Since most doctors dont want o acknowledge Lyme much less treat it here in IL I suspect the insurance co has not had alot of claims based on Lyme and so will not have much experience with it. Bottom line is they only really care about test results and if none of my tests show much of anything that they recognise I dont expect a favoralbe result. They remind me in every letter they do not believe in permanent disability. I am waiting to see the LLMD before saying anything specific since she is really the one who has to make the call.

    I am just afraid of the nature of this waxing and waning, not being able to predict when I get too ill to function vs able to function a little more when symps not as bad. How does one plan life around a moving target, how can anyone depend on me, I cant even depend on myself.
  10. roxie60

    roxie60 Senior Member

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    So far no major problems on AMoxy 3000mg/day. Have been taking very high probiotics (225 billion, I think most are usually 2-25 billion) to help keep the gut in check as much as possible. The one thing I notice is my tongue seems sore or kind of metalic if that makes sense to anyone. I feel I am gaining weight since I have to eat something with every round of Amoxy. Been eating a lot of homemade chicken soup with veggies.
  11. Clodomir

    Clodomir In hibernation mood

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    Hi Thinktank,

    You will probably begin with rocephine and than after 6 weeks you will take azythromycine... Then samento, banderol, cumanda and burbur... Wish you good luck!

    Rocephine was ok, but azythro was hard...

    Now i am beginning samento

    Have a nice day.

    Clodomir
    Helen likes this.
  12. Thinktank

    Thinktank Senior Member

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    @Clodomir, yes that's right. He prescribed 6 weeks ceftriaxone (rocephin) followed by 6 weeks azithromycin.
    I guess after that he wants to retest and create a new treatment plan based on the findings?

    Where did you get your IV abx treatment?
  13. Helen

    Helen Senior Member

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    I am on both Doxyferm and Azithromycin for 6 weeks as a first trial, or in fact a second, as two weeks of Doxyferm helped but it didnĀ“t last. Do you know how KDM argues for taking the two antibiotics apart, or after, each other?
  14. Clodomir

    Clodomir In hibernation mood

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    Hi,

    Ceftriaxone kill the Kystis form of spirochete ( spirochetes in balls) and the azythro, kill the spirochete and goes deeply in the cells ( brain, liver, stomach, etc...) .
    For me the azythro was very hard to support, but i can tell you that it does something... My stomach was a big volcano... :)

    I am waiting for my herbs now and normaly, i will feel better in 2 month.

    Have a nice day

    Clodomir
    Helen likes this.
  15. Thinktank

    Thinktank Senior Member

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    @Clodomir, have you ever tried DGL for your stomach / intestinal ulcers? I have chronic gastritis and DGL is the only thing that really helped me. Not omeprazole and all that crap, just plain DGL from enzymatic therapy. It's a life saver for me.
    Several DGL products available at iherb. http://www.iherb.com/search?kw=DGL&x=0&y=0#bid=EMT&p=1

    @Helen, i'm a new patient of KDM so i'm not sure about his thoughts on the combo doxy/azithromycin.
    Helen likes this.
  16. roxie60

    roxie60 Senior Member

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    Well im on my 4th month of abx treatment. After 3 months azith llmd changed me to Minocycline. Continuing septra ds, bactrim, also. 13 days after starting Minocycline I think I had my first herx. I was beginning to doubt my dx again but just concluded I must be one of those who dont herx. Well I thinm I was wrong. The herx lasted about 5 days with the worst being 48 hours of those days.

    Gingergrrl and Valentijn like this.
  17. Valentijn

    Valentijn Activity Level: 3

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    Sounds pretty similar to my reaction, @roxie60 - though even with a "low" temp, it might still be a fever if your ME-normal temp is even lower. My usual temperature is a very consistent 36, but is regularly 36.5-37 when feeling feverish during the antibiotics.

    Mine hit faster ... about a week after starting IV ceftriaxone, and an hour or so after starting IV azithromycin, but I wouldn't be surprised if the form (oral versus IV) can make quite a difference in delay of Herxheimer onset. My fevers were also higher during the ceftriaxone, though I'm still getting one pretty regularly with the azithromycin.

    My nasty reaction to the ceftriaxone (attacks the spirochete form, penetrates the CNS) was from weeks 2-5, then I felt okay week 6 and the following week with no antibiotics, then felt GREAT the week after that. Then I started the azithromycin (attacks the cyst form), and I start feeling quite awful about 90-120 minutes after starting infusion. Usually I feel a bit better by morning, but generally cruddy throughout the week until the day or so prior to starting the next week's infusions (just on Tuesday, Wednesday, Thursday).

    It sure feels awful, but it's also sort of "good" in that it means the bad little spirochetes are dying and it confirms that there were bad little spirochetes in the first place, since the reaction is due to the toxins they release as they die. Drinking lots of water should help in detoxing. We also had a lot of help from my mother during the first antibiotics, and are planning on getting take out or delivery on the nights after my infusions, since I'm quite useless then and even getting a bit of vertigo this time around. And my fiance's mother is on call in case we really need help on short notice.

    If you've not got someone reliable to help you, I'd suggest preparing for the bad periods during the good periods ... maybe cooking up a batch of food and storing it in single serving containers so you can stagger over and grab it when you need to it. Though even that is difficult if you're getting much nausea :rolleyes:

    That week before I started the 2nd antibiotic gives me hope ... I should be feeling that good again once I'm done with this antibiotic!
    Last edited: Aug 22, 2014
    justy, Gingergrrl, AndyPandy and 2 others like this.
  18. Martial

    Martial Senior Member

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    Please be sure to do plenty of de toxing! You may be killing off more then your body can handle right now, de toxing comes before anything else! That looked incredibly painful I am sorry to hear what you are going through :(. I hope to hear about your progress soon enough though!
    Gingergrrl likes this.
  19. Hanna

    Hanna Senior Member

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    @roxie60 your herx looks difficult to bear ! I hope you'll feel better very soon !
    Do you have some detox stuff on hand?
    Perhaps slowing down the treatment / or skipping a day or two (before resuming at full dose) would be better if you are Herxing too much ? What do your Doc recommend ?
  20. Gingergrrl

    Gingergrrl Senior Member

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    @roxie60 Sorry you are having such a terrible reaction (although I guess if it is a herx and murdering those little Lyme bastards than it is a good reaction?!!!)

    Please drink lots of water and electrolytes and feel better soon.
    roxie60 and Valentijn like this.

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