M Pneumoniae/mycoplasma/lyme?

[HopeSprings]

OK, here's a new one. Well new to me anyway. The CFS Dr. tested for m pneumoniae and the IGG came back really high 825 - positive is over 320. I've read there may be some relationship with this bacteria and Lyme. She said we could try antibiotics. But this is IGG (past infection), but she says with numbers this high it might mean something. So now I've got antibiotics on the table for this and antivirals for the EBV and maybe none of these numbers really mean anything? Anyway just wanted to see if anyone has experience with this particular bacteria?

[sue1234]

Interesting. I have been reading in the last few days about "molecular mimicry" and "autoimmune disease". That's how I ended up posting about if anyone had ever taken the rabies vaccine.

Anyway, I had read somewhere about mycoplasma p. infection and how it could precipitate an autoimmune reaction (any of the rheumatoid issues and for CFS). I thought it was interesting. I found where people were taking Minocycline(sp?) for it, long term, and quite a few having good results. That made me think of the possibility of a bacteria (or virus or whatever) could provoke the apparent autoimmune response some of us seem to have. We seem to have alot of us with inflammatory and/or autoimmune issues, but nothing that we can put our finger on. Not lupus, not myasthenis gravis, but things similar.

I think you finding this out is great! You might find some better days ahead of you! Keep us updated.

[martiz]

Hi Naomi,

This is a common infection in the ME/CFIDS population. When your immune system is taxed with the initial infection, then you are susceptible to any other that cross your path. I have tested positive for this one too.

I have not gone the route of antibiotics. Too afraid to permanently destroy my gut bacteria. I work so hard to keep it going and struggle to do so - I don't think my body could recover from long term antibiotics. I am sure you will do some research as this is an old topic in the ME/CFIDS world and many people have gone down the path of long term antibiotics - not just for lyme but myco p. as well. Check out their success rates and their technique (pulsing and alternating antibiotics) and then you can weigh your risk.

My goal is to somehow improve my immune system and let it take care of all of the infections. Hasn't happened yet but I still have some things to try.

I think you will find that after long term antibiotics, the infection came back for some people but worse because of the gut bacteria being wiped out. I can't remember if myco pn. hibernates in cysts - if so, then this may not be the best route.

I do take anti-virals for the EBV, HSV and Varicella Zoster. This doesn't affect the gut bacteria. It can do damage to your liver which I get checked but not as much as in the beginning. I have been on Valtrex for years and have been okay. I couldn't live without it. My OI is so much worse with active infection - recently had the generic switched and I truly felt the infection was in my brain.

[HopeSprings]

Marti-

I saw the CFS Dr. yesterday and we decided not to deal with the mycoplasma for now. She gave me a prescription for Famvir and I'm going to try that. This AV supposedly has less side effects - we'll see. She was very honest and said this is all stuff that may or may not work and that really until the cause is known it's all guesswork. I'm participating in research with her and donated loads of blood and other specimens (along with 200? other people) which will go to top virologists. I'm sure you've heard about the study. I hope and pray they figure it all out... it's about time.

What do you mean you had the generic switched and felt the infection was in your brain? I hope I picked the right AV - was just hoping to minimize side effects.

[martiz]

Marti-

I saw the CFS Dr. yesterday and we decided not to deal with the mycoplasma for now. She gave me a prescription for Famvir and I'm going to try that. This AV supposedly has less side effects - we'll see. She was very honest and said this is all stuff that may or may not work and that really until the cause is known it's all guesswork. I'm participating in research with her and donated loads of blood and other specimens (along with 200? other people) which will go to top virologists. I'm sure you've heard about the study. I hope and pray they figure it all out... it's about time.

What do you mean you had the generic switched and felt the infection was in your brain? I hope I picked the right AV - was just hoping to minimize side effects.

Hi Naomi,

I am glad she was honest with you. I have gotten the most help from docs doing research. I have gotten the most testing, the most orderly approach. I think that's a good thing for you.

In January, I switched my Medicare plan which forced a drug plan switch as well. So, the Valtrex generic, valacyclovir, was switched to a different generic brand. Well, there are 21 or so generic valacyclovir manufacturers and the one I got switched to used a different formula that did not contain all of the chemicals to keep the medication in suspension in my body. So, it passed through my systems quickly and I had about 20% effectiveness. This meant that my viruses (the ones kept in check by this particular anti-viral) replicated out of control and I was very sick - sore throat, swollen glands, feverish (but not really), It wasn't until I did some research and found that 3 of the 21 manufacturers do not use the suspension agents.

Once the pharmacist ordered the right generic Valtrex, I was fine within three days. I had been on the ineffective Valtrex for a month and a half.

But while I was sick, my OI was worse than ever and my head felt more 'swollen' than before. Like when a low pressure system moves in but a little bit worse.

I have some famvir but never tried it. I hope it goes well for you.

Marti

[HopeSprings]

Ohhh, I get it. Glad you figured it out!