Has anyone recovered from Chlamydia Pneumoniae?

Discussion in 'Fibromyalgia Main Forum' started by intensemom, May 6, 2006.

  1. intensemom

    intensemom New Member

    I'm one month into taking Doxycycline. I started out with fatigue, muscle aches, sleeping problems and a low grade fever. Everytime I thought it was getting better it would get worse. Then this past week it got worse: severe fatigue, brain fog, pain in joints, back, shoulders, neck, eye pain, abdominal pain, sore throat.... It got so bad that I decided I had to take a break from the Doxy until Monday; then I'll call the dr.(FFC) and see if we can do something different!!

    I am feeling a little discouraged right now because know that I'm going to have to endure this pain to get to the other side...I just wish I knew how long it will last and if it will work? Has anyone recovered and how long did it take? Your support is much apreciated!!!

    Love,
    Tracy
  2. CAAnnieB

    CAAnnieB New Member

    Hi Tracy,

    I am currently being treated by Dr. MIchael Powell in Sacramento, CA for Cpn. He follows the Vanderbilt Protocol (with fine-tuning based on his own research & individual patient's needs). The Cpn help web site is a great resource for understanding the chronic infection & treatments. There is a forum for asking others who are going through treatment for advice/ support.

    My Dr. & his P.A. have explained to me right upfront that the treatment/ healing process can take at least a year. There are many factors which determine how long your treatment will take: how high your Cpn load is, your individual reactions/ tolerance to treatment, co-existing factors (hormonal, infectious), the expertise of your health care provider in treating all forms of Cpn in your body.

    I've been treating for Cpn for 4 months. This past month was the most difficult because I am now taking the "full" treatment...aimed at all three stages of Cpn. I have reacted strongly each time a new anti-Cpn agent is introduced. I've had to proceed very slowly, as the Endotoxin/ die-off symptoms can be very nasty!

    There are 2 other of Dr.Powell's patients who are sometimes here on this board. We had a super-long thread going awhile back! Over the past few months; we have gotten together for support & are in close contact. It's not an easy treatment protocol, for sure. The 3 of us are at different stages in treatment. One has recovered "75 %" & is feeling pretty good! She has been on the protocol for about 1 year.

    I'm surprised to hear that the FFC's are only using one AB for treatment? As dcnfngrs stated; there really is much more to effective treatment than Doxy!...The Cpnhelp site is your best resource for learning about all aspects of Cpn.

    I DO know that my Dr. has had patients who have "recovered" and are now getting on with their active lifes! In fact, the old support group at my Dr's office disbanded because they are all doing so well & are busy getting on with their lives...That's sure encouraging to me!

    Best Wishes for healing,
    Annie
    [This Message was Edited on 05/07/2006]
  3. intensemom

    intensemom New Member

    Thanks so much for all the info. I have been on cpnhelp.org and was alarmed at what I found out. My FFC dr. is new at this. She only prescribed Doxy for 2 mos. and when I called to tell her of my stomach pain(due to doxy) she took me off of it instead of reducing the dose. She said we will restart it in 2 months. I am trying to trust her because God knows there isn't another dr. that I can trust (close by). Once again, I feel as though I need to do my own research and find a dr. to treat me appropriately. This DD is so frustrating!!!

    Thanks again and I pray that this burden will be lifted from you!!!
    Tracy
  4. intensemom

    intensemom New Member

    A couple of questions...how do you find out what your load is? I mean, what does it look like on the lab results and what is high?

    Also, what is bioresonance?

    Thanks,
    Tracy
  5. CAAnnieB

    CAAnnieB New Member

    Hi again Tracy,

    Just wanted to address the lab testing aspect of Cpn...I have read & been told by my Dr. that the current Cpn testing is NOT an accurate picture of infection &/or recovery. Just because you test "positive" for Cpn does NOT mean that you have a chronic infection! It simply indicates that you were exposed to Cpn at some time in your life...which the majority of adults HAVE been! Your body has made antibodies for the Cpn...that's all.

    The difference for people with FM, CFS & MS is that this bacteria can remain as a chronic infection & wreak havoc with your body! (Causing many of our Fibro/CFS-related symptoms) If the chronic infection is treated (LONG term treatment, multi-faceted...aimed at all 3 forms of Cpn), we have the chance for healing.

    I was really hesitant to jump into such a radical & experimental treatment protocol...especially because my lab resuilts; altho' falling in the "positive" range for Cpn, did not definitively indicate chronic infection! I came right out & asked my P.A., "So why even test for Cpn?" He said,"Good point!" It was explained to me that the current testing is not a good indicator of chronic infection...nor do they see a corelation between lab values & the severity of symptoms. In fact; my Dr. treats some folks who test negative for Cpn...They treat based mostly on symptoms versus the lab results.

    There is such a thing as PCR/DNA testing, which is only done at Vanderbilt University in their Cpn research department. This testing is suppposed to be more accurate...It is not available to the average patient.

    So, in conclusion, it seems that your reaction to anti-Cpn agents in treatment & your symptoms are MORE of an indicator of Cpn chronic infection. I started reacting right away to NAC (supplement)at the beginning of the protocol! (Die-off symptoms)When we have added each antibiotic since then; (INH, Flagyl, Zithromax) I have reacted even more strongly. It's not been an easy road, but I'm beginning to reap some benefits & it is a longterm comittment. It isn't a quick fix, for sure! As I'm sure you have read on the cpnhelp site; this protocol also consists of taking a huge amount of supplements, in addition to the antibiotics...and following dietary guidelines too!

    Hope this helps! If you have a willing Dr.; many people print out the Cpn Handbook off the cpnhelp site & share this with their Dr. as a guide/ resource. It seems that the FFC Dr.s should be willing to use this protocol as they already acknowledge the role that Cpn has as an infectious agent in FM/CFS. Good luck!

    Hugs,
    Annie

  6. Hootie1

    Hootie1 New Member

    You mentioned that the testing may not be accurate- if positive, but doesn't the titers mean anything Igm, iga, igg? That is what the FFC testing uses.
  7. kalina

    kalina New Member

    I had the PCR test done a few years ago, and it was positive for C. pnumoniae. My doctor told me there were no false positives with the PCR. Later, I tested positive again on the FFC test (which also showed several other positives) for whatever it's worth.

    I've been on Doxy off and on for a couple of years, and as far as I know, I still have Cpn. I bookmarked that Cpnhelp web site to read later -- thanks.

    Kalina
  8. CAAnnieB

    CAAnnieB New Member

    Bumping to reply tomorrow! Sorry, I'm majorly jet-lagged from a trip tonight & am too tired & "foggy" to explain...

    I'll dig out my test results/ handouts from Dr.P tomorrow.

    Best Wishes,

    Annie

    P.S. The Cpnhelp site explains everything one might need to know about Chlamydia Pneumoniae infection/ treatment...It is an EXCELLENT resource!