question about Mycoplasma pneumoniae/valcyte

Discussion in 'Fibromyalgia Main Forum' started by clo1, Aug 13, 2008.

  1. clo1

    clo1 New Member

    i am putting this question in the valcyte section because i feel comfortable here and i know that many of you have knowledge about pathogens other than HHV6 and EBV; and i wanted any feedback re: Mycoplasma pneumoniae...

    i have been increasingly short of breath and am scheduled for pulmonary function tests next week...

    when i saw dr. montoya 2 weeks ago he had some lab work done, just to rule-out any other possibilities, and his asssistant just emailed the results to me...i am positive for this bacteria, and my result is "64" (no range was given)...all of the other blood tests for bacteria were negative...i won't be seeing dr. montoya for follow-up about this, because he is not covered under my insurance plan (Kaiser), and since the trial is over, out of pocket expenses would be too high...i did however email his office to see how i should ask my kaiser docs to treat this...i know it will require antibiotics, but do any of you know whether this is treated with longterm antibiotics or is a short course enough?

    i would be very interested to learn what any of you know about this pathogen; it's given me some hope that maybe i have something treatable which is causing this breathing difficulty...thanks so much in advance, clo

    [This Message was Edited on 08/13/2008]
  2. maps1

    maps1 Member


    I have just been tested again. Dr. Garth Nicholson is the lead researcher in this field, here is the link to treatment. It is curable but takes some time[1]._00.1.21.RTF

    or to get to Dr. Nicholson's site.

    I don't think I ever completed the full treatment and here in Canada we do not have very accurate tests.

    I am currently being tested in Canada for HHV6 - CV something Myco and Lyme but if they come back inconclusive again I plan to get the US testing.

    Do you mind telling me where you had the test done?

    Also Mikie spent several years working on this bacteria so you may want to look up old posts.

  3. clo1

    clo1 New Member

    dear maps, thanks so much for that link; it was very helpful to read more about this tenacious "stealth bacteria"; apparently it behaves much like a parasite, is almost as small as a virus and is able to enter cells, thus eluding most antibiotic treatment...what is disconcerting for me is that it requires longterm use of antibiotics, which, paradoxically, is what seems to have contributed to the decline of my immune system in the first place...prior to getting CFS i had taken multiple courses of anitbiotics (and steroids, mostly prednisone) for asthma, allergies, teenage acne and respiratory infections...then everything - meaning "i" - "collapsed" when i was 32; i am now 53...

    in response to your question about where the test was done, it was through stanford, at focus laboratories in palo alto, doesn't state on the printed results whether this was a test for PCR or for antibody just gives the number "64", while all of the other bacterial studies (such as babesia, C. pneumoniae, C. pisttaci, lyme, etc...were all "negative"

    did your courses of abx help a lot? how are you now? thanks again SO much for your regards, clo
  4. simonedb

    simonedb Member

    is this the condition that intolerance to NAC possibly indicates?
  5. redhummingbird

    redhummingbird New Member

    Hi clo,

    I'm glad they found the mycoplasma. I wish they used a different lab to test for babesia (though all are pretty much unreliable for this test) because the air hunger and shortness of breath is one of the classic signs.

    I'm glad you emailed his office to see how to approach Kaiser about this.

    Do you have a good relationship with your primary doctor?

    I'll try and think of some solutions with Kaiser. I was a member there for years and received good care. I also worked there for a short while until I got sick and could no longer work.

    I apologize for not getting back to you about the detox question. I know that cholestramine is prescribed for this but it can cause a die off effect. I'm just learning about this myself and am not aware of other alternatives.

    Slayadragon, waynesrhythm are the pro's.

    Have you considered the methylation protocol? I hesitate to recommend it but I know that Mickie who successfully treated mycoplasma pneumonia tried the protocol but she treated the pneumonia first.

    I'm writing a rather rambly response. I just found out I have a "little" staph infection on the tip of my big toe.

    I'll keep my brain fogged thinking hat on. We're all pulling for you!
  6. ladybugmandy

    ladybugmandy Member

    clo...dr. garth nicholson is the expert in mycoplasma treatment. i used to email him all the time and he would always email back. i don't have that address anymore and the only one i could find online is:

    in jan of last year, i saw dr. levine. at the time, she suggested that if antiviral approaches didn't work for me, i should try minocycline and/or azythromycin for Mycoplasma pneumoniae.

    i get the impression that you have to take the drugs long-term or maybe until the antibodies no longer show up elevated..?

    there are several very good sites on the internet regarding mycoplasma treatment.

    good luck
  7. stschn

    stschn New Member

    I'm so sorry to hear this on top of everything else you have been going through. I'm so thankful that you-and all of us- have the information and support of this mb.
    Love Joyce
  8. clo1

    clo1 New Member've all given me so much information and help...i feel 10x more knowledgeable than i did this morning!

    dr. montoya actually called me a short while age re: this issue; he of course wants me to have all of the acute issues ruled-out (pulmonary embolism especially)...i told him that's already been ruled-out; that this doesn't feel emergent - it feels he recommends that i get a steroid based inhaler, because this could be a recurrence of my childhood/teenage asthma; he said the the "64" is not that high of a number for M. pneumonia; of course i forgot to ask him what the number represents! but that it may be causing some of this; so he suggests that i ask my pcp @ kaiser for zithromax x 2 weeks as well; i have left a message and will hear something soon i hope, because i am just miserable (physically)...

    sue...thanks for your link...and by the way i emailed you privately about dr. ablashi's number etc.; did you get my email?

  9. chrissy12

    chrissy12 New Member

    I have been wondering if some of Dr. Montoya's patients didn't have positive results from valcyte because of these other infections like mycoplasma. I spoke with Dr. Lerner in June and he said he spoke with Dr. Montoya about other factors. I am glad he is testing for these, too.

    I have high antibodies to mycoplasma. I started with 545 and they kept going up and up. When they went over 800, Dr. Lerner started treatment. The test was Labcorp, it doesn't sound like the same test you took. Dr. Lerner put me on 500 mg of azithromycin. My number went from 913 to 895. He wanted to put me on IV therapy in Michigan, but he was going on vacation, so he doubled my dose. He said his normal treatment is IV's, then oral for a long time, didn't give exact time. He is going to look at my labs when he returns and then tell me what is next.

    He informed me that he believes the mycoplasma pneumonia triggered the viral activity. This may be what is happening to you,too. I hope this is helpful.. Cindy
  10. clo1

    clo1 New Member

    thanks everyone...i have read everything with great interest...i so appreciate the pcp from kaiser just called and he WILL order the beclamethasone inhaler but he won't order the zithromax unless i have a chest x-ray...i have been "nuked" so much in the last 6 months, including multiple chest x-rays and CT scans, that i actually don't know if the cost/benefits ratio is worth yet another one...i think i have reached my maximum number of "rads"...also, that's mainstream HMO medicine; i don't think that this would show-up on a chest x-ray as pneumonia per se...have others of you with m. pneumonia also had negative chest x-rays and still felt like you have pneumonia??

    the other chest x-rays yielded nothing; so i guess i'll have to get the zithromax through dr. montoya...

    it's so weird sometimes to realize that we each have one body, but that each part/section of it is parceled out to a different takes the lungs, one takes the heart, one takes the GI tract, one takes the pathogenic organisms...and on it can literally make one feel fragmented!! what was that old adage about too many cooks spoiling the broth?? i am feeling like spoiled broth!!

    [This Message was Edited on 08/13/2008]
  11. acer2000

    acer2000 New Member

    Does anyone who has treated mycoplasma Pn. have any more detailed info as to when they use Doxy vs. when they use Zithromax (or something else like cipro)? I read Dr. Nicholson's stuff and basically he just lists about 10 antibiotics, but says he usually starts with Doxy. But Lerner uses Zithromax? Is Zithromax better than Doxy at treating mycoplasma? At what point does Dr. Nicholson abandon Doxy for the other ABX? There are a lot on that list...
  12. simonedb

    simonedb Member

    why did they do that? why is there a stigma with this too?
  13. chrissy12

    chrissy12 New Member


    I don't know if this is going to help, but I was on doxycyline for 1 1/2 years with my pcp. My numbers were always around 500. When I went to see Dr. Lerner, he took me off doxycycline for about 3 months and then my numbers went way up. He said he uses azithromycin. He did not tell my why. I am interested in knowing this, too.

    However, he did say if I come to Michigan to do the IV's, I would probably get 2 iv's a day, one doxy and the other azith.
  14. maps1

    maps1 Member

    I have not checked Dr. Nicholson site in a long time but the treatment plan he suggested was a change in antibiotics every 6 weeks for at least 6 months.

    You asked how I was doing, well.......

    Last summer at this time I had my sister from the UK come stay for ten days and we did all kinds of things. Since xmas I have been able to do very little. Because taking antibiotics at that time for long periods was controversial I have never done the full six months of or changed them every six months. I have had four more tests for myco two came back inconclusive and two negative.

    Three months ago I stopped taking Lorazapam and started Immovain for sleep have been in horrible all over body nerve pain, naseau, unable to eat, bloating, acid reflux.

    First they said it was withdrawal, then they gave me meds for ulcers, then told me it was IBS and gave me dicetel. I decided Monday would have to get pain medication but thought I would come off the Imovain just to make sure. The last two days I have not had the nerve pain, now the problem is what do I use for sleep.

    Rambling a little, sorry. Anyway I have been on and off antibiotics all these years mainly doxy and always feel better when taking the antibiotics.

    I believe that I still have the myco and am now determined to find accurate testing and complete the treatment as per Dr. Nicholson.


  15. clo1

    clo1 New Member

    dear maps, i am so sorry to read about your struggle, but am relieved to learn that the pain has lessened...i have taken clonzepam for years to sleep (same family of meds as lorazepam); i realize that benzodiazepenes like these are addictive but i have tried so many others for insomnia and nothing else seems to work...i hope you find something that works for you...

    and re: longterm use of antibiotics, that is what concerns me about this treatment for M.pneumoniae...antibiotics were WAY over-prescribed for me as a child, teenager, and young adult...and i ended up with CFS!! so it seems like kind of a vicious circle doesn't it?

    best, clo
    [This Message was Edited on 08/14/2008]
  16. clo1

    clo1 New Member

    dear kelly, you're absolutely right about the chest x-ray and how nothing is likely to show-up because this is a chronic infection...but Kaiser is a huge HMO and the doctors keep their practices within certain protocols...until something has been accepted by the entire medical community and published all over the place, they just won't treat it...and they won't try to learn about it because they don't have time!

    fortunately my pcp @ kaiser seems to totally get the CFS issue and has been vigilant about my disability forms etc...but that's about all he can do, other than offer meds for symptomatic relief...

    before i see the pulmonologist, i am having pulmonary function tests done this coming airways just feel SO restricted...i am going to start that inhaler today, because this is just too uncomfortable; even though i have a healthy fear of corticosteroids - and this inhaler is prednisone-based! that is also a very immunosuppressive drug, but sometimes we just have no other choice! as usual thanks so much for all of your input; you are very, clo
  17. ladybugmandy

    ladybugmandy Member

    interesting....i also had antibiotiocs over-prescribed to me as a child. i had ear infections like every other month...and the idiot doctors in the small town where i lived kept giving me antibiotics.

    turns out i had an inner or middle-ear fungal infection the whole time!

    ugh. doctors.
  18. chrissy12

    chrissy12 New Member

    Me,too. I was put on antibiotics a lot, chronic sinus and bronchial infections and then I ended up with CFS.
  19. acer2000

    acer2000 New Member

    Thanks Kelly,

    I'll have a look at that thread. I have been on Doxy for about 6 weeks with no change in symptoms. However I took Zithromax before and I felt better (like substantially) after only 5 days. My Dr. said I should take Doxy because thats supposedly better for mycoplasma, Cpn, Lyme, etc.. all infections (with the exception of lyme) that I have elevated titers for, but negative PCR. He thought that my previous response to ABX was enough to try treatment. But since after 6 weeks on doxy I haven't felt any different, I am wondering if I should change back to Zithromax. I am trying to gather information as to how these Drs decide which ABX to use... or if there is some rhyme or reason as to when they switch them. hmm

    [This Message was Edited on 08/14/2008]
  20. SpecialK82

    SpecialK82 New Member

    I was give alot of antibiotics too - teenage and early adult for acne and then started with them for re-current UTI's, taken for dental work because of MVP, etc.

    And I know I'm now resistant to the one that they used for acne, I'm sure all of these weren't good for me.

    After going to the FFC last year, they thought that I might have a yeast problem - was on Diflucan for awhile but I didn't notice any differences...
    [This Message was Edited on 08/14/2008]