Any Opinions about treating FMS/CFS with Antibiotics Protocol?

Discussion in 'Fibromyalgia Main Forum' started by Jeanette62, Nov 13, 2005.

  1. Jeanette62

    Jeanette62 New Member

    I had my first appt last week with Dr. Powell and I'm interested in hearing about others experiences in treating their FMS/CFS sx with antbiotics for either the Chlamydia Pneumoniae or Mycoplplasma Pneumoniae Protocol. I left with a good feeling and think Dr. Powell has great intentions and really wants to help his patients. I feel lucky to have found a doctor with this must knowledge that accepts my PPO insurance plan. Of course I still need to do my homework before I fully make my decision about how I want to treat my FMS sx.

    I will get the blood test done next week at a Quest lab to see if I have this type of infection going on in my body. I have not had any visible signs of infections and have been healthy with no sign of any type of illness other than the FMS since being off work for over a year now. The odd thing though is my WBC and some of the other blood work was elevated in May and Aug and my PCP was not able to find any explanation and even after running a few more tests which were neg.

    I hear some of the FFC use this type of protocol too. Have others had any success with it and are you having improvement after having stuck it out for at least 8 months? Is anyone seeing improvement before that? What can I expect? With the holidays coming up would it be better to wait to start until after if it sometimes makes you feel worse for awhile? Did anyone stick it out and not have it work? Is this really a viable option or are we just ginea pigs hoping for a cure while the doctors are testing their theories on us?

    Any feedback would be greatly appreciated.

    Thanks,

    Jeanette


  2. spacee

    spacee Member

    Seems to me that there are a number of abx protocols being used. I have no knowledge of the ones you mentioned.

    I was using the Marshall Protocol. I had to stop about 6 weeks ago due to a death in the family and then my house had to be rewired and the workers were not able to do that without using daylight. (The Marshall Protocol only works if you drastically cut your exposure to daylight.)

    On the MP I could feel it working even though the die off from the bacteria made me sick. HOWEVER, the abx at 25mg every other day made me feel the best I have in years. So, now I need to decide whether to do the MP or see if my doc is ok with longterm small dose abx. At my age (56), I am not going to try to have a career, so just feeling better might be the better choice for me.

    I have had CFS for 20 years and have had good improvement with the Transfer Factors but no improvement with high dose Valtrex. Just adding that for what it's worth to any others reading.

    My feeling with our DD is that we try, try, try and sometimes we find something that helps.

    Hugs,

    Spacee
  3. victoria

    victoria New Member

    To make a long story short my son started exhibiting same physical sx that I have, has had problems past few years but it got to the point that it was eerily the same.

    I am also on the marshall protocol as it was the easiest to do with limited funds, so I do believe that I have a bug of some sort as I have herxed, etc....

    Decided it was best to take my son to Lyme Literate MD (LLMD) since he spent most of his timeoutside... sure enough had an active as well as chronic infection.

    He is getting better after 6 months of abx pulsed, we are also having further testing done on him.

    all the best,
    Victoria
  4. lenasvn

    lenasvn New Member

    Here is an outstanding article about treating auto immune disease with antibiotics. Might be of help!

    http://www.immed.org/reports/autoimmune_illness/IntercessorNewslett-10RTF.htm
  5. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    have never gotten over the aftermath and would undo it if I could. I stuck it out for 9 mths, wish I would have backed off when I started getting chronic yeast infections, but i trusted my doctor.

    She knew I had systemic candida, but I didn't have problems w/ vaginitis until after. I was leery of abx when i had candida already, but she convinced me that my immune system would get stronger from treating bacteria and would eventually fight that off too, hah. I tested w/ high antibodies for both m. clamydia and m. pneumonia.

    I was only on low dose Tetracycline, a weaker, narrow spectrum abx; and just every 2nd day too. Every day on was painful hell. it was definitely killing off bacteria, I didn't even need deordorant for the first time while I was on it.

    That was 7 years ago and at best i can get the vaginitis down to once a mth. I'm still fructose intolerant and can't have fruit or it rages back. I think it's a very risky treatment.

    I'm not lucky w/ drug treatments though. I tried Nystatin to treat the yeast after and that made me much worse and caused more resistant candida. Recently, I tried Questran to kill off neurotoxins. The herxes were the worst hell ever, I never even got up to the desired dose of 4 a day. IBS is worse, bowel function is worse, food allergies back that I'd cleared years ago, more fructose intolerant than ever, made yeast worse for mths and I only did a 3 wk treatment.

    I won't be doing anymore drug treatments, I'm done. I'll stick to supplements and herbs, which give me slow, but sure improvements w/out dangerous setbacks. I can't afford to keep making myself worse, these treatments are needle in haystack and very risky if they backfire.


    Jeanne
  6. Wasabi

    Wasabi New Member

    Hi Jeanette,

    I'm also a patient of Dr. Powell. I've been going to him since May of this year. The protocol takes a lot of effort and patience, but for me it has been more than worth it. I'm doing so much better after six months on the protocol.

    If you want to try this protocol, I think it's important to stick with it, first of all, and to do all of the components he prescribes for you. I know others who have done the protocol partially or who keep take a few months off from it here and there. They are not making nearly as much progress as I have. It's a real pain to be so consistent, but I've been trying my best, and I've seen some rewards.

    The antibiotic portion of the protocol has made a big difference for me. Although I don't show any signs of an obvious infection--at least what we normally think of as infection--I do show signs of chronic infection. Symptoms from an acute infection and a chronic infection are sometimes very different.

    When I went to Dr. Powell, my health had been declining for at least two years. On a scale of 1 to 10, with 10 being terrible pain and fatigue, I would estimate that on average, I had a 6 on pain and an 8 on fatigue. Now, in general, it's about a 2 or 3 on pain and a 4 or 5 on fatigue. I feel so much better and am able to work consistently. I'm so glad I found Dr. Powell.

    I hope Dr. Powell's protocol helps you. Please keep us posted. I love to hear reports from other patients that go to Dr. Powell. Take care!
  7. Frecker777

    Frecker777 New Member

    Antibiotics are one of the only treatments that have garnered an obvious positive reaction in me. When I took Biaxin close to 3 years ago for some trivial problem, I felt GREAT and my doctors decided to start checking for active infections (lyme mycoplasms). Anyway, they were a bunch of idiots, but my doctor now found I have an active lyme infection (positive IgM western blot), so I am on 400mg of Doxycycline a day. I can’t lie—I feel horrible so far, very nauseous—but I want to give this protocol a chance. For me, the chance of getting better far outweighs the risks.
    -Carrie
  8. Wasabi

    Wasabi New Member

    Hi Jeanette,

    I just realized that you were part of previous threads that discussed Dr. Powell, so I'm sorry if my post in this thread was repetitive! (I tend to forget who posted what in what threads.)

    Anyway, I did want to ask you if they've had you watch the first couple of videos at Dr. Powell's office. They explain his overall protocol and also a more in-depth explanation of chlamydia pneumoniae and mycoplasma infections and their effects on the body. If not, I recommend asking about it at your next visit. It really helped me understand the reasoning behind the protocol.

    Also, I wanted to mention that if you have any questions, Dr. Powell and Michael McClanahan (his P.A.) are both really good about returning calls and talking to patients over the phone.

    This was especially helpful for me when I was having a hard time adjusting to one of the antibiotics. They had me cut back my dose, let my body adjust, and then go back to the higher dose again. Michael always says that I should let him know if the treatment is getting overwhelming. They really want you to be able to stick it out, so if you're feeling overwhelmed by everything, they'll help you figure out a way to stay in it for the long haul.

    Anyway, best wishes! Do keep us posted on your progress.
  9. Mikie

    Mikie Moderator

    About using Doxycycline for 2 1/2 years for chronic mycoplasma infection. I had no problems on the Doxy and it seems to have brought the infection under control.

    Love, Mikie
  10. Jeanette62

    Jeanette62 New Member

    I just switched to Dr. Powell because of reading one of your posts a few weeks ago. Thank You!! I wouldn't have found him otherwise.

    I liked my other rheumy, but she just didn't seem to know more than the basics. I'm glad to have found a doctor that has knowledge of current research and treatment for FMS even if I have to drive a little further. My thyroid has been flucuating since March and my PCP and the other rheumy weren't running the necessary tests or treating it even when I had all the sx of low thyroid.

    I did watch the first video at my first appt. and Dr. Powell gave me some handouts with info on Chlamydia and mycoplasmas infections and some good websites to check out. The info is just starting to sink in, but it's a bit overwhelming.

    I started on doxycycline to clear up an unusual rash that had been going on and progressivly getting worse for close to a year last Feb. Around that time is when the dizziness, nausea and some of the FMS symptoms really intensified. Now it makes me wonder if it stirred up some kind of bacteria in my body and it reacted. I have been on and off the doxy several times since then. I had FM sx prior to that, but didn't get dx until 9/05 or even know anything about it.

    All I knew was something wasn't right in my body, but the doctors took a little while to figure it out. I guess I can consider myself lucky that they figured it out so quickly. I first saw the doctor 3/05 for the dizziness and nausea and he finally put it all together in Aug and sent me to a rheumy in Sep.

    I currently have not had any obvious sign of infection other than the FM sx. I did have elevated WBC and other blood tests levels in May and Aug that my PCP wasn't able to figure out especially since at that time I also had no signs of illness either.

    It wouldn't surprise me though if I have one of these bacteria's inside me. I've worked with kids for the last 19 years and use to get sick all the time from being around all those germs. I had my share of bronchitis infections over the years.

    I went to the Quest lab today for the blood test. They had to stick me 3 times to get my vein and this is the guy who can usually find little veins - just not mine. It must have been his off day. The other lab I go to has the best plebotomist I've ever had. She finds it first time and can get the needle in and you don't even feel it.

    It's good to hear you are seeing improvements.

    Jeanette
  11. Jeanette62

    Jeanette62 New Member

    Thanks Spacee. Glad to hear it's helping you feel better.

    Victoria - My son has has mentioned some tenderness in some of the tender points and has been complaining of not sleeping well so I've been considering having him checked as well.

    Lenasvc - that's a great web site - It was on Dr. Powell's list of web sites for me to check out.

    Jeanne - I too have concerns about yeast infections although I have already been on the doxycycline for something else and was able to tolerate it. Thanks for sharing your experience because I'll know it's something I need to be aware of.

    Carrie - makes me wonder if the doxy contributed to the nausea I had. I thought it was all from the vertigo and dizziness, but maybe it was both. Thanks for the info. It's hard to think about having to go back to feeling like that again.

    Mikie - That's great the doxy has brought your infection under control. Did you experience any nausea while on it?

    Wasabi - Have you had any nausea or other sx from the antibiotics?
  12. jaltair

    jaltair New Member

    I'd be interested in knowing the doses of Ab's that people have taken. Mikie, if you read this, please let me know the dose of Doxy.

    My husband is on low dose Doxy for rosacea and it has really helped (no one understands why Ab's help rosacea).

    I've read about several protocols, but my doctor won't agree to do any Ab's ;<) I've been tested for every infectious disease possible and the doc hasn't found any.

    Warm wishes to all,

    Jeannette (with two n's)
  13. Wasabi

    Wasabi New Member

    Jeanette,

    I was really nauseous during my first cycle of Flagyl, but taking extra charcoal seemed to help. Mostly, I just endured that first cycle and kept taking the Flagyl even though I didn't feel like putting anything in my mouth. The second cycle of Flagyl was much better. I'm on my fourth cycle now, and I don't really feel any effects from it anymore. I think my body just had to adjust.

    Also, every time I added another antibiotic, I was dizzy for the first couple of days. When this happened, Dr. Powell had me reduce my dose until I didn't feel dizzy any longer. Then he had me up the dose again, and I was fine after that. Apparently, dizziness isn't a typical reaction to antibiotics, but it seems to be my body's standard initial reaction.

    I haven't had anything that shouted, "Die-off!" to me. Sometimes I'm a bit more tired when I'm on Flagyl, but I can't say for sure that it is because of the Flagyl.

    Otherwise, I've been pretty fortunate, as my reactions to the antibiotics have been tolerable or at least fixable. This has been a nice surprise, because I'm allergic to a number of antibiotics. :)

    By the way, I'm also taking Nystatin, probiotics, and Fluconozole to combat yeast. It seems to make a difference, along with the Candida diet.
  14. jfrustrated

    jfrustrated New Member



    My cfs doctor told me not to go on it, for all sorts of reasons, but, at the same time, he recommended it for another person who I know who has cfs. He is monitoring her on it. It's not for everyone, but it does seem to have helped this other person. So it seems to me that it all boils down to a personal decision to give it a go, based on the advice of an informed and caring doctor who does not have any special idea that s/he wants to 'push', but rather is aware of a variety of possible treatment approaches and suggests which one suits you best. I would be aware, from past experience, of any doctor who only treats cfs in one way or with one type of treatment.
    We are all really different in spite of what we share.
  15. Mikie

    Mikie Moderator

    Herxing when there was a big killoff. I had taken probiotics for years and the Doxy didn't upset my stomach at all.

    Love, Mikie