My 12-year old niece tested positive with the QRIBb [1:128!] yet negative by IGeneX WB [although it is still highly suspect- it was done very, very late. It was after IVIg's, as well as steroids]. She does not live in an endemic area, nor did she visit such an area. She also tested positive for mycoplasma pneumoniae. After researching old posts, I see many tested positive for mycoplasma pneumonaie, but actually had mycoplasma fermentans. The research I've done shows both can actually cause the symptoms my niece is having [similar to ALS, Guillain-Barre']. Her blood tests revealed: June, 2005: IgM= 1.20 [positive is >.96] and IgG= 1.08 [positive is >.32]. July, 2005: IgM= 1.21 and IgG was .86. Lumbar puncture in Aug., 2005 revealed: IgM= <1:10 and IgG= 1:640 [positive is >1:10]
I'm wondering if there's anyone out there that tested positive for mycoplasma that had neuromuscular problems [paralysis, loss of function] and how long it took to see results? What med. protocol did you use? Would tinidazole be helpful? Currenlty, she is on 1g. Rocephin [5 months] and 500mg. Levaquin. So far, very little progress has been made since her respiratory distress back in Feb., which I'm wondering if we have the right medicine protocol, or do we need to be patient with the Levaquin [6 weeks]. She showed she was severely immunocompromised back in Nov., 2005, even after IVIg's.
My initial bought of lyme started with mycoplasma m infection. myco has a long reproductive cycle like lyme but not as long. I had a quest test by titer levels IGM was 2.4 and igm 1300. Anything over 600 was posative. For me intially oral zith was used but it took a long time.
You might want to research enzyme therapy. Rieghts regulate is a very good product but I also use wobenzymes between meals. there is information out there that enzymes can be helpfull in getting rid of the mycoplasma. At least I can atest that using the enzymes really helped my lymph system open up so that the body could filter out the infection and the other infections that I have. There are others out there who have the more technical backing behind this.
Posted by mikej2323 (Member # 8913) on :
Thanks for the response. What are the enzymes called that you take? Is there a website? How long did it take for you go get better? What kind of symptoms did you have?
I am awaiting my first mycoplasma testing (blood pcr) which was taken last week. I asked very simailar questions to yours several weeks ago and the best I can tell you is that Ketek seemed to be the most common abx that patients on this board are using for myco treatment.
Search Mathias on this site for more detailed answers to your questions. He has first hand experience with myco infection in the CSF with an ALS type presentation.
Once I know more personally I will get back to you.
Good Luck!
Posted by burnbitter (Member # 7088) on :
quote:Originally posted by mikej2323: I'm wondering if there's anyone out there that tested positive for mycoplasma that had neuromuscular problems [paralysis, loss of function] and how long it took to see results? What med. protocol did you use? Would tinidazole be helpful? Mike [email protected]
Hi, I tested positive to mycoplasmas. I was on 500mg of zithromax for 30 days and that cleared it up for me. It also lead me to my lyme diagnosis.
Posted by Mathias (Member # 5298) on :
mikej2323, Your post describes my symptoms (similar to ALS, Guillain-Barre) and the difficulty I had with getting a diagnosis (initially dx'ed with M. pneumoniae but actually had M. fermentans). Fermentans was PCR proven to be in by CSF.
To answer your questions about treatment, Levaquin is a good antibiotic for mycoplasma. It also crosses the BBB well which is also a +. Rocephin is useless against myco. I'm not sure about tinidazole but can check and get back to you.
I've been on antibiotics specifc for mycoplasma for 2 years now. I'm about 90% recovered but still have symptoms and I relapse within a month if I come off antibiotics. It took almost 1 year for me to see any amount of improvment worth talking about.
Protocols that have worked for me:
Ketek and Doryx Ketek and Cipro Ketek and Factive Factive and Tetracycline Factive and Doryx
I've also done short courses or Levaquin and Minocycline. Both were early in my treatment and had to be stopped due to severe herxheimer reactions. Ketek/Doryx was the first protocol that didn't almost kill me and gave me some relief.
BTW, mycoplasma antibody tests cross react with each other. You need a PCR test to determine what species the infection is caused by which will then lead to proper treatment. For example, fermentans is resistant to Zithromax but it is excellent to pneumoniae.
Posted by Mathias (Member # 5298) on :
Also got your PM and responded.
Posted by ping (Member # 6974) on :
Mike -
Having had Micoplasma(s) sp. and Lyme for some years, I've found Minocycline most effective for myself and many other people (certainly not everyone in the world) for this infection.
Be warned, it's very powerful and suggest titering up 50mgs. at a time. (Yes, they do make 50mg. caps.)
"We are more than a container for Lyme."
Posted by mikej2323 (Member # 8913) on :
Ping-
What were your symptoms? What tests were done, and which tested positive? How long before you had results? Any permanent damage? What kind of abx. protocol did you do?
Mike, I'm really sorry about what your niece is going through.
After reading this thread and the other that you posted, I can't help but wonder if there is some major co-infection here that has been missed.
True, many people don't feel good for quite awhile, but it seems like your niece has seen zero improvement, even for a short period, and I'm not sure that should be the case.
Has your niece been thoroughly tested for stuff like Babesia, Ehrlichia, Bartonella, Rocky Mountain Fever - the common TBDs?
As I'm sure you know, abx does not treat stuff like Babesia, and there are scads of people here who will attest that until they treated their Babs, they did not recover.
I'm certainly not a medical person, and I have not been here nearly as long as some, but I just feel like there is something going on with your neice that has been missed. (It almost sounds like "tick paralysis", but her illness has gone on too long for that to be true.)
Well, I hope you get some answers soon. I think you said you don't really have an LLMD, and if not, then I think maybe now is the time to find one.
Tracy
Posted by klutzo (Member # 5701) on :
Mike, Jelly Belly has evidently not seen this post, and she has had years of tx for Mycoplasmas and is doing very well now. You might want to PM her. Klutzo
Posted by TheCrimeOfLyme (Member # 4019) on :
in case no one mentioned this, levaquin is a quinolone. Quins can cause serious muscle problems, which may be contributing to her not healing in that area!
Posted by Truthfinder (Member # 8512) on :
Oh, Mike, I also meant to ask if your niece had been tested for genetic tissue type - like the HLA-DR4 type. Some LLMDs and researchers believe that certain tissue types are more difficult to treat with abx, have a lowered ability to eliminate toxins, and may be more susceptible to immune diseases.
Here is but one discussion of the HLA-DR4 test. There are many discussions if you do a search here.
"Lumbar puncture in Aug., 2005 revealed: IgM= <1:10 and IgG= 1:640 [positive is >1:10]"
This is a chronic CNS infection which has not been adequately treated with only 6 weeks of Levaquin. Prolonged therapy is required to erradicate mycoplama infections.
My recommendation is to stick with the Levaquin or try to enhance it with a 2nd antibiotic from the tetracycline class.
Floroquinlones and tetracyclines are the best available therapy if what your are dealine with is M. fermentans infection and not M. pneumoniae which in my opinion is highly probable and can only be confirmed with a PCR test.
Posted by mikej2323 (Member # 8913) on :
Mathias- would PCR testing even be worthwhile? Is it too late? Isn't the infection well established in her nervous system? She's been on IV-Rocephin for 5+ months & Levaquin for 7 weeks, but maybe it is time to switch to minocycline. I've read some good feedback with that. The Levaquin is mentioned in Dr. B's treatment guidelines for Bartonella and Mycoplasma. Coinfection testing was negative and I don't think she has Babesia--her symptoms really don't present like babesia.
Truthfinder, I will look into the the HLA-DR4 tissue type- thanks. Klutzo- I will seek out Jellybelly.
This whole ordeal has been a nightmare. The only people willing to help are from the message boards- I don't know what we'd do without you guys!!!! Thanks!
Mike
Posted by Mathias (Member # 5298) on :
I think a mycoplasma PCR is absolutely necessary.
Like I stated and based on my own personal experience antibody tests cross react and most labs do not test for the different species of mycoplasma. Mycoplasma pneumoniae is the most common so they only test for that species.
The different species of mycoplasma in many casues required different antibiotics in order to be properly treated.
Tests should be ordered from MDL, they specialize in this type of testing. Have the doctor order #301, 302 and 338 preferably on both blood and spinal fluid.
You should be off antibiotics for a few days prior.
Posted by Danser (Member # 7373) on :
Hello, I'm dredging up this old topic to ask for help. My husband had a PCR test for micoplasmas about 3 months ago that came back negative. The test was done at MDL Labs.
Now he recently had a PCR test done at Quest labs and it came back positive for microplasma.
I'm not sure if he has it or not. His lyme treatment has not done anything that we can tell. He's been treated for about 18 months with various ABX including 6 weeks on IV rocephin.
He's currently taking Mino for the lyme. Will this also treat the micoplasma?
Posted by TNJanet (Member # 10031) on :
I recently had a positive test for Mycoplasma Fermentans along with my 2nd positive Western Blot test done by MDL. (First positive was from IgeneX.)
From what I have read in the general medical literature, it appears that the standard of care treatment for mycoplasma is long-term ABX. Does that mean that I could more easily convince my
primary care doc to prescribe ABX to treat THIS infection? Just wondering.
Thanks, Janet
Posted by johnlyme1 (Member # 7343) on :
My LLMD treated my myco until both my IGG and IGM were down to non positive levels. I had Myco M. Zith did the best for me but we also were adding in other ABX combos durring treatment that would also hit my other co-infections.
I was on IV rocephine first a number of weeks for my lyme but pulsing 500 zith 4 days a week. Then we switched to IV zith for babs with other meds. By
by the time I was off IV zith my myco level were almost normal.
We kept oral Zith in the mix for about 4 more months. It took a total of about a year to get rid of the myco M.
As I posted above, enzymes were also used to help clear it out.
Posted by Jellybelly (Member # 7142) on :
I never did see this post, and as Klutzo said, I have been positive by PCR for Mycoplasma Fermentans and Pnuemonia. As someone else mentioned above, minocycline has been the ABX I have used and I have been in 90% remission for nearly 5 years and that means without having to be on ABX or else I will relapse.
The mino is EXTREMELY powerful and needs to be taken slowly. It penetrates extremely well. The ABX were not the only thing that I attribute my remission to though. I wholly believe that treating my hypercoagulation was as essential. Also I took Elavil for many years which stops nerve pain and encourages deep sleep which most of us have a problem with. The deep sleep is the time when our bodies release growth hormones and heal. So if you aren't deep sleeping this is not going to happen.
Mycoplasmas were the first infection I was found to have and did not find out that Lyme was in the mix until I had been in remission for several years.
Posted by CherylSue (Member # 13077) on :