stealth pathogens

[illinwithoutacause]

through my unending research to find out what could possibly be going on with my body, i have found information about mycoplasma infections through the medhelp autoimmune expert and group boards and also from some other web sites.  from what i understand, this micro-organism can be a co-infection affiliated with lyme disease, or be an isolated infection that can cause many of the neuro symptoms members of this board have described.

has anyone's doctor addressed this as a possibility?

best wishes,
binx

[illinwithoutacause]

kristin--i am in complete agreement with you that we should be incredibly skeptical.  i try to punch holes in nearly everything the doctors say to me, especially after being jerked around so much during the past year.  the post-viral or post-bacterial infection theory seems to be a sort of catch-all when the docs don't have another explanation for what could be going on in the absence of a clear-cut dx.  the way my rheumie explained it actually made sense to me in some ways and that made me wonder more about the possibility of a mycoplasma infection as a possibility when i read about it on the autoimmune expert forum.  i'll talk to my rheumie about it at my next appointment in februrary and see what she says.

hi wanna--are you talking about the marshall protocol?  i have read about that and it does seem rather extreme.  if that is what your friend is doing, i wish her the best and hope she finds some relief sooner than later.  i know the same sort of long-term antibiotic treatment can be a part of managing lyme disease as well, sometimes with few results.  

i don't know--it's all just so confusing at this point.  like i have said, i just keep looking for solutions.  there may be a point where i have to accept that there isn't a solution and focus my energy on just staying as stable as i can, but i haven't quit fighting yet.

take care,
binx

[kris_tin29]

Could you message me the website?  thanks

[Want to feel well!!!]

Hi...the kind of treatment that says you need to kill all the bacteria in your system requires you to be on and off long term antibiotics for years.  Yes, years.  

I know someone who is doing one of these treatments and she is still waiting to feel better after 3 years.  She purchased a DVD from a well known website and she tells her doctor what to prescribe and when.  He is willing to go along with it.

She is still hopeful it will cure her.  I hope she is right.  I want her to get better and feel like her old self.

Personally I am skeptical.  But then again...doctors haven't been too quick to fix many of us, have they?????

I dunno.

Wanna :o)
  

[kris_tin29]

I know what you mean.  I am desperate too and getting even more so by the day.  I have not seen a rheumatologist yet.  I've been looking for one in a nearby bigger city.  I, too, will probably bring up this infection aspect and see what is said.

I didn't intend to come across as too skeptical-I hope I didn't.  I think I am just learning to be a skeptic throughout this whole process.  "You have anxiety-take this pill, that'll fix you" (No!), "Oh, it's ADD, here, try this it'll get better "(No!), "Anxiety", again (No!), 'oh, it's just clogged nasal passages that are causing your headaches "(No), 'You have stenosis, that's causing all your sympltoms' (No!)....So when I read, "You might have an infection'...my intellecual side says "Yeah, right, Whatever!"

Good Luck.  I truly hope you find the answers you are looking for.

Kristin

[illinwithoutacause]

i looked at that web site, too, after reading through the autoimmune expert forum.  both my rheumatologist and neuro-ophtho did tell me that some autoimmune disorders can be triggered by viral or bacterial infections, and after reading the im med.com site, it kind of clicked that the specific infections he refers to might be something to discuss with my docs in more detail.  

i don't know.  i guess i am just so desperate to figure out what is going on with me before i suffer from permanent damage--if i haven't already.

thanks for your reply, kristin.
binx

[kris_tin29]

My Dr hasn't, but the Autoimmune Dr on the medhelp website also suggested this for me and suggested I go to   im med.com.  There is a questionaire on this website.  His institute seems to feel very strongly that fibro, cfs/me and other things are truly untreated infections.  I'm not sure how I feel about this.  On one hand, I feel like there have been no other answers for me and maybe I should pursue this.  On the other hand, is he just trying to promote his website and research group?  It seems to be controversial.  Just like with autism...is it caused by vaccines, metal, yeast, infections???  this seems to be a similar thing and I'm not sure which side I come down on.   of course, traditional medicine hasn't helped me out much yet, so maybe I should look into the "untraditional" things like yeast or infection build-up.

kristin