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Lyme Disease + HHV6 + EBV

Discussion in 'Lyme Disease and Co-Infections' started by anncavan, Mar 24, 2010.

  1. herbqueen

    herbqueen

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    Yes_-given how ill I am with serious MS type symptoms plus a whole lot more -I wonder about stem cell treatment.

    I've been told you have to kill the lyme first? that the stem cell treatment will only heal the damage but not kill the lyme?

    I'm actually so sick now- i don't think I could make the trip to India--plus you need a care give with you the whole time. I'm not sure who I could get for that......

    I'm scared that abx treatment will just progress this illness more-I know you have to get ill before better-butgiven the horrific reactio I've had first to herbs 2 years ago (lasted 4 months and my neuro progressed) and now on just a few drugs and an herbal lyme tea-I don' think I could handle any more neuro degradation /herxing.

    I would love to know more about the cases dr . harris has sent to india and there story. If you can get any info on that it would be great.

    I'm working with Dr. messer -nationally recognized homeopath in Arizona- he thinks he can help me -

    Do I trust homeopathy? Can it cure serous illness like neuro lyme or MS? Dr. Messer says yes it can. I feel I'm so sick Im at a critical juncture point. I have to give the homeopath at least 6 to 8 month try - if it doesn't work my illness continues to progress. I'm in agony right now and every day get a new symptoms ( like now my right arm/hand is numb this week-was just left side before)And still not sleeping what so ever even on medication. I'm losing mobility. Every part of my is affected right now. So dizzy I'm sick . Too many symptom to list again. Very miserable and housebound now for 4 months. Not coming out of this.

    I see Dr. Horowitz for first time on May 5. I wonder if he has any patients that have had stem cell treatment in India or elsewhere? Is stem cell the miracle cure for autoimmune/lyme type problems? There is so little data on it.

    If anyone has any advice-please let me know!
     
  2. herbqueen

    herbqueen

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    stem cell-india versus cheney's central america choices for lyme?

    Just curious on thoughts of India (embryonic) versus the clinics cheney is using for lyme/autoimmune/cfs etc?
     
  3. herbqueen

    herbqueen

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    With lyme etc- I wonder is it the lyme or is it our immune systems not functioning correctly making us host to lyme plus alot of other stuff? If stem cell can help reset/repair the immune system than maybe it would help. I'm only considering stem cell so sick and my attempt to take herbs and now just a few drugs seems to set off a chain reaction/horrific AI type reaction or acceleration of the disease and I"ve lost so much function now with MS type issues.

    I know for me AI issues run in my immedate family as my mother has cfs/fibro type issues and sisters have AI issues as well.......so is it really lyme or non functional immune system?

    If stem cell does work- than it might be a threat to the big name lyme docs? IV therapy is not cheap- I have a friend that just went through hell/18 months of it-- she said it was 7K a month- they had to mortgage their house, take out credit cards, sell their retirement accounts- etc. I think she spent more on IV treatment then stem cell would have cost. She is better-she had major neuro issues -but still not well and now after 3 years of treatment/doctor says another 3 years of orals to beat out bartonella.

    Would love to know the experience of harris and other lym doctors patients on stem cell therapy. I only read about Amy (is it scher?). Cant remember her last name. Are there others?
     
  4. rebecca1995

    rebecca1995 Apple, anyone?

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    Hi Ann,

    I'm curious if you've been tested for any of the tick-borne co-infections, such as Babesia, Bartonella and Ehrlichia. A lot of LLMDs say that it's hard to get over your Lyme if these infections are present. Each of them requires a different treatment. For instance, for Babesia you'd want to be on an anti-malarial such as Mepron, Malarone, or artemesia.

    Good luck with the Lyme treatment! Many people with positive Bb tests do get dramatically better on antibiotics. (I was not one of them, unfortunately. :()
     
  5. Cloud

    Cloud Guest

    Excellent question....Is it the Lyme or the Immune system? Of course the infection(s) is at this point perpetuating the illness, but I have to go with original onset being caused by immune malfunction. This is especially easy to see in my situation because I didn't have an infectious onset....it was stress+vaccine (immune trauma). All of the infections I test positive for now (including the Babesia and the xmrv) had to of been there through my healthy years prior to illness onset.
     
  6. August59

    August59 Daughters High School Graduation

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    Lyme info

    I know you are already seeing a Lyme doctor, but in case you might want to look over this site and it may help you ask better questions or understand more of what the doctor is saying because treating Lyme can be intense to say the least.
    Here is the link to his detailed Lyme's Overview - http://www.jemsekspecialty.com/lyme_detail.php. His name is Dr. Jemsek and he is a very good Lyme doctor and has cured a few of my friends that have been infected. One of them had 3 deer ticks on his back at the same time with a "Bull's Eye rash" on two them. One of them was just about dead center of his spine. Even with the rash he had 2 doctors tell him that it wasn't lymes and they wouldn't even test him. Finally got test from LabCorp, an ELISA titer w/ Western Blot on positive and it came up negative (it had been 3 musinessonths at this point). He finally got into see Dr. Jemsek and I believe he took an antibiotic for few days and then submitted a urine sample which turned out to show a very strong positive. He went through a lot and we have no doubt that he would have died if not for Dr. Jemsek. He finally made his biggest improvement with a triple antibiotic regime administered intravenously over 4 to 6 weeks (best guess) because of something was embedded or attached to walls of heart. While all of this was going on, the NC Board of Physicians were in the process of "pulling" his license to operate. He moved about 20 miles down the road to SC and remained there till he recently moved to Washington, DC (due to his own daughters illnes). My other friend had it much better but caught it twice and almost 5 years to the day between first and second occurances. He saw Dr. Jemsek from the very start (because he knew my other friend as well and what he had went through. They both worked outdoors (land surveyor and land clearing business) and we have a very dense pocket of Lyme infection (pretty much exclusively from the deer tick) in a 3 to 4 county area in the piedmont of South Carolina.
    Sorry for the long story, but do hope you get well and soon as possible. If you are not satisfied with a doctor don't hesitate to change.:victory::victory::victory:
     
  7. herbqueen

    herbqueen

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    Maybe I am not a strong person- but I've gone through hell fro 4 month downward spiral from just taking my first drugs flagyl for 1 week/diflucan for 3 and a lyme tea- so bad i feel like dieng and neuro symptoms are 100x worse-house bound (I was functional before ,declining for sure but living life now feel like I have MS plus a hell of alot more with unbearable brain stuff, jerking,swallowing, talking issues, muscle weakness, nerve irritation in brain, weak neck, numb limbs, walking issues, burning all over, eye feel like they are going to pop out, so dizzy couldn't walk at times etc etc.etc. -I don't think I can handle anymore decline or take the lyme treatment--I do know I have to do something because my disease is progressive and degenerative-I hate to think where I'll be 4 years from now.... it's definitely my worst nightmare- oh to only have the fibro diagnosis I got 12 years ago!!! Can I wake up from this bad dream?

    I'm not sure I can get over the terror of treatment-but meeting with famous llmd to see what he has to advise on May 5-

    Looking into all options- on the topic of stem cells.....
     
  8. Cloud

    Cloud Guest

    I am so sorry you are having such a horrible time now. Maybe your herxing? I don't know but those symptoms sounds horrible bad. I'm really glad your seeing a good LLMD soon....maybe you can move it up even more? Cancellation list maybe?
     
  9. herbqueen

    herbqueen

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    Yes it's really bad and scary. I seem sicker than most people on the MS boards as well as Lyme. I tried the cancellation list- they don't have one for Dr. Horrowitz- he's in pretty bad demand- I don't see how I could be herxing/declining 4-5 months later after stopping 1 week of herbal tea/3 weeks drugs? I have declined signficantly neurologically and I'm fearful of how much I will recover. The head /brain /weak neck stuff is unbearable and the loss of function from the neck down is terrifying.

    I'm looking forward to seeing him/but terrified at the same time as I'm terrified of taking anything given the horrific reactions I have. I go into an anxiety attack when I think of putting anything into my body that would make me worse from where I am right now (which is not tolerable). And I'm not sleeping/stopped sleeping. I need to sleep to heal-so it's a catch 22.
     
  10. jeffrez

    jeffrez Senior Member

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    Not intended as medical advice, but if it were me I would consider some of the neurological "nerve tonic" herbs, like lobelia, gotu kola (which even has some antibacterial activity), maybe garlic or allicin if I tolerated sulfurs to try to keep it in check as much as possible, etc. Gotu kola especially has a lot of promising neuro activity, even the ability to regenerate axons. You just have to make sure your liver can handle terpenes, possibly get liver function tests once in a while to make sure the enzymes aren't elevated.

     
  11. anncavan

    anncavan

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    Update: Improving with Lyme ABX treatment

    Hi all,
    I started this thread, so thought I'd provide an update. Last February I was a 3 on a good day, on the Dr. Lerner Energy Index Point Score, and tested positive for Lyme. I had a PICC line inserted March 15 and started 3 grams of Unacyn (Penicillin) via IV 3 times daily, and 1500mg oral Flagyl daily. I felt AWFUL. After 3-4 weeks I noticed signs of mania, so was pulled off Unacyn for 3 days(I felt amazing those 3 days!), then back on 3 grams only twice a day. After 7 weeks I became allergic to penicillin, measles like rash head to toe. I was pulled off Penicillin and Flagyl immediately.

    This break from penicillin was fantastic for cognitive function and energy. During this time off the IV's I was given 500mg zithromax daily and 500mg of tindamax (easier on the stomach than flagyl). At the end of these 3 weeks, I'm feeling stronger than I have in 6 months. And can say I'm a solid 4 on Dr. Lerner's EIPS.

    I continue to follow my Dr. Lerner CFS treatment plan - Valtrex, Valcyte, thyroid, betablocker, digoxin and florinef. However the Lyme treatment is by Dr. Harris in CA.

    I've just added in Rocefin (2 gm via IV) twice daily, 4 days on, 3 days off. So far so good.

    Thanks for all the kind words and suggestions!
     
  12. Kati

    Kati Patient in training

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    Ann thank you for the update- Wishing you much luck for continuing progress.
     
  13. nventor

    nventor

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    Yes to the identical diagnosis, I was treated however with oral antibiotics for probably ten of the last twelve months. I only found
    out about two months ago that I had active HHV-6 and EBV infections, and because of difficulty in finding the right doctor and not
    to mention the problem getting into see someone, I have made only some progress. My blood work was so bad that my regular doctor
    and a Internal Medicine doctor at Johns Hopkins thought I had a form of cancer. After careful review at the Sidney Kimmel cancer center
    at Hopkins, it was determined by a group of Hematologists that the above infections were my problem. In the interim while I searched for
    a ID doctor with expertise in HHV-6 my family doc prescribed Valtrex, which I stayed on for about a month. It did seem to help
    but after seeing an ID doc at Hopkins this week, he started me on the same dosage of Valcyte as you, but discontinued
    the Valtrex. No real side effects yet going on day four for the Valcyte, but questioned his office again about discontinuing the Valtrex and again
    was told do not take it. I would like to hear any additional comments or questions you may have as we do seem to be in a very similar situation.
    Also, I've posted here on this site begining this week a couple of times and mentioned a link to the best paper on the treatment of EBV and HHV-6
    I have read. The link is http://www.plazamedicine.com/hhv6/hhv6_1.html
    Regards,
    Roger
     
  14. Timaca

    Timaca Senior Member

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    Ann~ That's great that you are seeing improvements! Yeah! That's a lot of rocephin! When I was on it, I did 2 gms once daily, 3 days on, 1 day off.
    Hang in there and may you see continued improvements!
    Best, Timaca
     
  15. KC22

    KC22 Senior Member

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    Ann - Thanks for the update. Your story sounds similar to mine; hhv6 ebv cmv and my bacterial problem is mycoplasma. I went through the picc line IV therapy, too. It was rough to say the least. I am a patient of Dr. Lerner's, too. Did you have to live in MI for IV therapy? I think, not sure, that he will let you have a doctor monitor your IV therapy from home. Is that true?? My mycoplasma are not coming down and he said quietly we may have to do different treatment, but he didn't say what that would be. I did live in MI for 6 weeks and that was really hard to be away from my family that long.

    Roger- HHV6 is treated with valcyte. The valtrex is used to treat EBV; according to Dr. Lerner. I wish you well on the valcyte. My die-off didn't start until 2 weeks into it. It lasted for months. I take valtrex and valcyte. Definitely, the valtrex is easier to handle. I am still on both; can't wait to be away from valcyte. Good Luck with your treatment...
     
  16. nventor

    nventor

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    KC22 Thanks for the reply, as I've said in other posts here, the two ID docs I saw (both top notch and one with incredable credentials) were both in agreement that
    there was not a treatment protocall for HHV-6. One refused to even try Valcyte, the other I was able to convince with supporting documents in hand to prescribe it,
    but he wanted me to stop the Valtrex. I had been taking it for about a month with some significant overall improvement. So much controversy, so little time.
    PS Are CBC blood draws weekly always standard?
    Regards,
    roger
     
  17. August59

    August59 Daughters High School Graduation

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    I think you are on a great treatment plan at this point. I have the EBV and HHV-6 for which I took Valcyte and I think the dose was 300mg 3x/day. I haven't been tested for Lyme's, but a friend of mine went a while without being diagnosed and misdiagnosed till he got in with Dr. Jemsek (LLMD). I remember the line being put in, but the thing that stuck in my mind really hard was that the line had to go completely to the heart and the antibiotic (I think there were 3 - 1 a week for 3 weeks) had to be delivered directly into the heart chambers, but it worked. he is in good health now and is back at work. Really has to watch what he eats now though, but he is fine with that.
    I think you will come out of this very well.
     
  18. aquariusgirl

    aquariusgirl Senior Member

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    id doc refused to rx valcyte? why?

     
  19. nventor

    nventor

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    His explanation was he did not believe the HHV-6 or the EBV could be the cause of the symptoms I was having, (text book CFS) and
    also had a problem with the toxicity, he said he was not comfortable prescribing it at all.
    roger
     
  20. Timaca

    Timaca Senior Member

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