Discussion in 'Fibromyalgia Main Forum' started by CAAnnieB, Mar 4, 2006.

  1. CAAnnieB

    CAAnnieB New Member

    Hi to the FFCers! (Or anyone treating Cpn)

    There is a group of 4 of us on the board who are being treated by Dr. Powell in Sacramento, CA for Chlamydia Pneumoniae. Our Dr. follows the protocol of Dr. Charles Stratton, a researcher/ Dr. at Vanderbilt University.

    Our treatment consists of MANY supplements/ vitamins, and a progression of longterm antibiotics aimed at killing the 3 forms of the Chlamydia Pn. bacteria.

    I am very curious to hear about how the FFC's are treating Cpn. Do they discuss this chronic bacterial infection much? How exactly are you treated for it?

    Also...What testing do they do? Does anyone know if they do IgM, IgG & IgA testing or do they do PCR DNA testing?

    It is my understanding that the PCR DNA testing is more accurate in diagnosing infection, but that actually none of the current blood testing is very reliable. Treating for the Cpn infection & watching for reactions/ improvement seems to be the standard.

    Thanks for any info you can share.

  2. pumpkinpatch

    pumpkinpatch New Member

    The FFC treats cpn with doxycycline, biaxin and flagl on the 3rd week (in Denver). Combination protocol which works the same for lymes.

    So I was targeting two things at once since I have both.

    I was tested through Quest.
    Chlamydia pneu. antibodies IgG EIA- RESULT 2.05
    FFC Dr. told me that the infection has reactivated.
    (1.11 IV or greater Positive)

    Sounds like your treatment plan with Dr. Powell is similar with the abx, supplements, hormones and vitamins.


  3. CAAnnieB

    CAAnnieB New Member

    Thanks for your response! Did you start all 3 AB's at the same time? Have you had any reactions/ side effects to treatment?

    Dr.Powell starts his patients out on a large amount of supplements/ vitamins...including NAC (N-Acetylcysteine)-which is a natural alternative to using Amoxycillin. After about a month; he adds INH or Isoniazid (an anti-tuberculin AB). When this is tolerated & symptoms of endotoxin resolve; Flagyl is added in pulses...5 days on, 2 weeks off.

    I am having a rough time tolerating the INH.Currently, I can only take 1/4 of a tablet every other day. The full dose is 1 tablet daily. It appears that it will be a while before I can tolerate adding the Flagyl!

    Have you been given much written information on Cpn treatment from the FFC? Do they give you B12 injections during your treatment?

    Hope you are seeing improvement in your overall health. I'm encouraged because my pain levels have decreased since beginning this protocol, even though I've had a rough time with Endotoxin release symptoms.

  4. laf5307

    laf5307 New Member

    Hi Annie: I have been treated by the FCC in Ohio for the last 10 mo. for CPn infection. I had the IgA, IGg, and IgM titers done along with a battery of a zillion other tests. I have a Cpneumoniae from 1/31/06 of:
    IgM <1:16
    IgG > 1:1024
    IgA 1:64
    What that means is I have an old infection and a relatively recent infection from Cpn. I took 3 mo. of Cipro and 3 mo. of Doxy and added a huge list of supplements since last April. they found me hypothyroid, low on estrogen and progesterone, besides the infection. Obviously by my blood in Jan., the 6 mo. of antibiotics didn't work because my IGG titer was exactly the same as it was 10 mo. ago. Now I am taking an herb called Cumanda which is a extract created from a Amazon tree bark and is mainly used for Lyme disease but has antibacterial, antifungal and antibiotic effects. I have been on that now for 2 weeks and I am experiencing herxing(flaring of my fibromyaglia pain) and on and off sinus infections. Today is the first day I have had less pain and feel pretty good. I started NAC myself about 2 weeks ago after reading the web site and the Vanderbilt U. protocol. It is a difficult website to understand and read. I think all of us are looking for a miracle protocol that will fix us but I don't think it exsists yet. I trust this info. will be of help and I suppose you are like me and sick and tired of being sick and tired!!! I wish you well and hope your treatment is working!
    Lisa from Ohio
  5. pumpkinpatch

    pumpkinpatch New Member

    Thanks for your response! Did you start all 3 AB's at the same time? Have you had any reactions/ side effects to treatment?

    Annie: Yes, I started all three at once. However, it hit me like a ton of bricks. Cut back to 1/2 the amount. Just couldn't function or eat.

    Yes I'm also on supplements and vitamins as per FFC. Not as many as some. hormones, CQ-10, Proboost, NT Factor, garlic, abx. I've heard of NAC, it raises gluathione levels I think. And I don't know about INH? Is it an antibiotic?

    I was tested for my B12 blood levels at the FFC and they were right on target so don't need shots.

    I was not given any written material. Get alot of info off the cpnhelp.___ website.

    I went to a LLMD early Feb. I showed him my FFC blood tests results and he was impressed with all they test for. I also had my FFC Igenex test results with me and he said I was a no-brainer for lymes. He told me that with my lyme-specific bands the only other ailment I could have would be syphillua. (and I don't have that).

    The LLMD put me on amoxicillian and tinidaloze( weaker form of flagl). I'm taking 7 per days now for almost 1 month and I can tell you I'm tolerating this much better. I hope to co-ordinate both the FFC and the LLMD.

    One other thing I forgot is I am really concentrating on the yeast and I take BIO K and also Threelac and my stomach is so much better. I was on dyflucan for 3 months and didn't notice any difference. I really think the doxy gave me more yeast.

    Lot of trial and error but we're going to get there.


    [This Message was Edited on 03/04/2006]
  6. CAAnnieB

    CAAnnieB New Member

    Thanks for your replies!

    Yes, the Cpnhelp site certainly is overwhelming & technical at times, but I have found it to be a big help in sorting out Endotoxin infection symptoms, treatment/ Endotoxin release symptoms & Secondary Porphyria symptoms. I've been reading there a lot over the past few days as I struggle with pretty nasty symptoms from the INH.

    The INH is an anti-Tuberculin antibiotic. From what I've read; some Dr's are hesitant to use it because of it's threat to liver function. Our Dr. monitors us closely for liver problems & uses supplements/ Rx's to protect the liver during treatment. His treatment handout lists Doxycycline, Minocin & Zithromax as alternatives to INH.

    One thing I find interesting is that the FFC would tell you that you absolutely had or have Cpn infection based upon the lab results. According to the Cpnhelp site & my Dr.; the values are not really indicative of anything except exposure & production of antibodies at some point in our lives. I had hoped the lab results would make me feel more comfortable committing to such a heavy duty protocol; but when I questioned the P.A. about this; he confessed that the lab values did not correspond to the severity of symptoms or outcome of treatment! (At least in their patient population.)

    I think what is more indicative of infection is having Endotoxin symptoms with treatment. If a person did not have the infection; they would not exhibit a reaction to the antibiotics.

    Anyway; it's not really a big deal, I just find it interesting. I agree, that the Chlamydia Pn. is probably just one layer of our illness. Dr.Powell feels it is a HUGE cause of many of our symptoms. The bacteria affects so many bodily functions. I am beginning to believe it is the cause of my GI problems (Gastritis & IBS) as well as the FM pain & Thyroid/ other hormone dysfunctions. Thyroid & Yeast treatments are also important aspects of my treatment regime.

    Thanks for sharing what the FFC's are doing. I truly believe they are probably the most comprehensive in their testing for underlying conditions. It seems that those who are being treated agressively for these underlying conditions are the ones who are feeling the most improvement in their health.

    Best wishes on your treatments!

  7. Jeanette62

    Jeanette62 New Member

    I just saw this posting. I saw another posting about FFC and CPN and posed the same question. GEEZ was this same question on our minds today or what? I thought if no-one happened to answer I was going to post it as a thread. Good thing I saw yours first.

  8. CAAnnieB

    CAAnnieB New Member

    Hi twinofdar,

    If a person is acutely infected with Chlamydia Pneumoniae, they can have Bronchitis or Walking Pneumonia or Pneumonia. "Normal" people recover from their respiratory illness & don't experience any lasting effects from the infection.

    Those of us with FM or CFIDS probably have a genetic weakness which somehow allows a chronic infection to develop of the Cpn bacteria. This bacteria can invade many different parts of our body, hiding inside our cells & causing dysfunction of various processes.

    Researchers believe that the Cpn bacteria can be linked to MS,Chronic Fatigue, Asthma,Arthritis,FM, Chronic Refractory Sinusitis, Cardiac Disease, Interstitial Cystitis, Prostatis, Crohn's Disease, Inflammatory Bowel Disease & Alzheimer's. There is actually an even longer list of conditions in which Cpn has been implicated (as well as lots of other info) at

    Best wishes on your treatment at the FFC. We are all hoping that by addressing these underlying conditions; we will experience healing & a better quality of life.

    [This Message was Edited on 03/05/2006]