Mycoplasma an Underlying Issue? - I don't know what to think

[Patrick*]

Scotty,

I recently submitted to a panel of blood tests for all kinds of ME/CFS "usual suspects." My Mycoplasma pneumoniae IgG antibodies were 3.08. A positive result is anything about 1.10, so I'm almost 3 times that.

But, my IgM antibodies were only 65, where positive is anything over 770. So my IgM antibodies are very low.

Unfortunately, my doctor wasn't much help in interpreting these readings. Based on my reading, I don't seem to have a recent infection, but it's possible I have a reactivated infection. I have no respiratory symptoms, but I have had strong, unexplained chest pains within the last 7 months.

By the way, these test results weren't conducted at any specialized lab -- just Quest Diagnostics, which is a huge, corporate lab. So I'm not sure how accurate they are.

Personally, there are so many other infections I need to address that mycoplasma has fallen toward the bottom of the list, unless/until I confirm that I have an active infection. But I'll be following this thread closely.

Good luck,

PWCalvin

 

[Boule de feu]

Almost died from mycoplasma pneumonia

I'm not sure if what i'm going to write will help you, but here it goes.

I was in my second year of university when I contracted mycoplasma pneumonia. I was hospitalized right away. It was a pretty rough time. My parents were called (I was six hours away from home) in the wee hours of the night because the doctor did not think I would make it. I survived but never regained my full health after that.

I always thought that what triggered it was a blood donation. I was underweight (100 pounds) but we went ahead anyway. Two weeks later, I got very sick.

A few weeks before that, I had volunteered to participate in an experiment at school. My teacher (well-know hematologist at the hospital) wanted to analyze a few blood samples to show us the differences and anomalies we could find. When he showed my slide and my results, he said it was very strange since I had no igM (well, almost none left) in my blood. After the class, he told me to have it checked (and it was an emergency). I got very sick not too long after that.

Would I say that mycoplasma is the cause of CFS? Well, I don't know. After researching Nicholson's work, i had a lot of time to think about this.

Personnally, I believe I had CFS symptoms when I was young (before pneumonia). I spent a whole summer in bed just before leaving for university. However, I got sicker after the pneumonia episode. My life got very complicated after that. Maybe my immune system was already lacking the defense needed to fight the mycoplasma. This is why I caught it when I was an adult (22 years old), which is unusual.

So, I don't really have an answer for you. I would tend to say that mycoplasma can cause CFS. However, you must be immuno-deficient in some way or lack a genetic component. A healthy person would not get it?

As far as the antibiotic goes, I would try it. Just make sure your daughter is well prepared (probiotics and nystatin). I did take a lot of antibiotics (especially erythromycin) for very long periods of time and I regret we did not know about this. I got a lot of stomach and gut problems. It felt like my stomach was digesting itself and it made me eat a lot. The nausea never left me. To this day, I am very sick and my lung symptoms come back when I am exhausted (but no sign of mycoplasma anymore).

I know it's not an easy choice to make.

Good luck.

 

[Boule de feu]

This might help!

A good read?
(mycoplasma, chronic fatigue syndrome and antibiotics: a doctor's opinion)

http://www.prohealth.com/library/showarticle.cfm?libid=8949

 

[Athene]

Scotty,

I recently submitted to a panel of blood tests for all kinds of ME/CFS "usual suspects." My Mycoplasma pneumoniae IgG antibodies were 3.08. A positive result is anything about 1.10, so I'm almost 3 times that.

But, my IgM antibodies were only 65, where positive is anything over 770. So my IgM antibodies are very low.

Unfortunately, my doctor wasn't much help in interpreting these readings. Based on my reading, I don't seem to have a recent infection, but it's possible I have a reactivated infection. I have no respiratory symptoms, but I have had strong, unexplained chest pains within the last 7 months.

By the way, these test results weren't conducted at any specialized lab -- just Quest Diagnostics, which is a huge, corporate lab. So I'm not sure how accurate they are.

Personally, there are so many other infections I need to address that mycoplasma has fallen toward the bottom of the list, unless/until I confirm that I have an active infection. But I'll be following this thread closely.

Good luck,

PWCalvin

http://sistints01.rm.unicatt.it/microbiologia/esame.asp?coddali=2931

I am sorry that this is in Italian, but it explains that you get positive IgM results about seven days after infection, they peak at 10 to 30 days, and after 12 to 26 weeks they fall to indetectable levels. The presence of IgA antibodies must be measured as this is a reliable indication of an active infection, both in the initial phase and during relapses after periods of remission. IgG antibodies form after the body has already made IgM and IgA antibodies, but in some cases (peoploe with existing immune abnormalities) people never make IgA or IgM antibodies to the infection.

This text is an extract from the microbiology degree exam used in Italian universities, which means it is accepted as the diagnostic standard at national level in Italy. Therefore I would presume it is based on pretty reliable research and proof.
Hope that helps.

Sono test qualitativi per il rilevamento di anticorpi nel siero o nel plasma contro il Mycoplasma pneumonite. Gli anticorpi IgM sono determinabili circa 7 giorni dopo il verificarsi di sintomi specifici. La maggiore concentrazione di anticorpi IgM si trova tra 10 e 30 giorni dallinizio dei sintomi. Dopo 12-26 settimane i titoli degli anticorpi IgM calano a concentrazioni non pi rilevabili. Gli anticorpi di classe IgM si rilevano con maggiore frequenza nelle infezioni primarie ma non nelle reinfezioni. Come marker di infezione in atto viene quindi considerata significativa la rilevazione di anticorpi di classe IgA che risulta evidente sia nel corso di uninfezione acuta sia nel caso di reinfezioni. La formazione di anticorpi IgG a seguito di uninfezione da Mycoplasma inizia dopo quelladegli anticorpi IgM e IgA. e raggiunge il proprio massimo nella 5a settimana dallinizio della malattia. In casi rari pu avvenire che uninfezione acuta decorra senza la formazione di anticorpi IgA e IgM.

 

[Athene]

A good read?
(mycoplasma, chronic fatigue syndrome and antibiotics: a doctor's opinion)

http://www.prohealth.com/library/showarticle.cfm?libid=8949

A very interesting read, thank you for that linkl!

I'm sorry to hear about your really awful experience with mycoplasma pneumonia.

 

[Lala]

I've been on plaquenil for a long time and it does work well. I cannot remember exactly what it does beyond the same effect as artemisia, since sadly one of my many symptoms is LBS (Leaky Brain Syndrome).

The dastardly trio of infections you listed is what I have, with mycoplasma and a few others too. Having bartonella along with either chlamydia pneumonia or mycoplasma pneumonia is a severe bummer, because you need bactrim included in your protocol to beat the former, and azithromycin to cure the latter - but you cannot take them both at once.
Therefore you have to decide whether to go relentlessly against one infection till it is eliminated, then work on the other, or keep alternating between the two (one month at a time). I had a long run of attacking bartonella, but the chlam and myco got too out of hand so I'm attacking them now... but several long-gone bartonella symptoms are resurfacing, as the doctor predicted. Aargh! It's like playing a game of snakes and ladders.

That is interesting, Athene. I have completely different experience, though we have the same doctor. I am on atb protocol for bartonella, which is efficient for these coinfections as well. You do not necessary need to take bactrim to kill bart. I am allergic to bactrim, so I could not take it at all and I am currently taking combination with rifampin. It seems to me that bart. is the most difficult bastard to eliminate! It makes me upset, how it messes up our brains.

I have already killed mycoplasma pn. with my previous protocol (see Stratton/Wheldon- cpnhelp.org)

 

[xrunner]

I've been on plaquenil for a long time and it does work well. I cannot remember exactly what it does beyond the same effect as artemisia, since sadly one of my many symptoms is LBS (Leaky Brain Syndrome).

The dastardly trio of infections you listed is what I have, with mycoplasma and a few others too. Having bartonella along with either chlamydia pneumonia or mycoplasma pneumonia is a severe bummer, because you need bactrim included in your protocol to beat the former, and azithromycin to cure the latter - but you cannot take them both at once.
Therefore you have to decide whether to go relentlessly against one infection till it is eliminated, then work on the other, or keep alternating between the two (one month at a time). I had a long run of attacking bartonella, but the chlam and myco got too out of hand so I'm attacking them now... but several long-gone bartonella symptoms are resurfacing, as the doctor predicted. Aargh! It's like playing a game of snakes and ladders.

Thanks Athene.
The one difficult to rid of for me is Borrelia. Bartonella doesn't seem an issue any longer.

 

[Athene]

That is interesting, Athene. I have completely different experience, though we have the same doctor. I am on atb protocol for bartonella, which is efficient for these coinfections as well. You do not necessary need to take bactrim to kill bart. I am allergic to bactrim, so I could not take it at all and I am currently taking combination with rifampin. It seems to me that bart. is the most difficult bastard to eliminate! It makes me upset, how it messes up our brains.

I have already killed mycoplasma pn. with my previous protocol (see Stratton/Wheldon- cpnhelp.org)

Hi Lala,

I've been taking rifampin for just over a year, I'm still on it. But since I stopped bactrim the bartonella is getting worse again. The symptoms had basically gone, I was actually wondering if it was cured. Since removing bactrim I have had a rapid and very bad relapse. My brain is still reasonably OK so far, but neuropathy is very bad and my sleeping has gone absolutely crazy, I can hardly sleep at all though I am exhausted, and my skin is itching like mad all over and my knee and ankle joints are so bad the next door neighbours can hear me walk up the stairs!

Dr N did tell me the stuff I am on now also combats bartonella, but it seems in my case it is not strong enough. I do agree that bartonella really is the bastard to kill off. I am now thinking its symptoms are worse than chlamydia pneumonia and mycoplasma, (except for the heart problems, which were frightening me after all the serious heart trouble and heart surgery I have had, and which have now almost gone.)

What do you take apart from rifampicin?

The stratton protocol is the one I am on now, but I don't have flagyl yet, and Dr N is not keen to give me that, he says it is too heavy for the liver. He says we should regard that as the absolute last resort because many people ca be cured without it. Did you have flagyl to eliminate mycoplasma, or did you cure it without that?

Xrunner, what protocol did you use to eliminate bartonella?
I really do think that is the one to kill off first. Quite honestly, I think if I could eliminate that one, then borrelia alone would be much easier to live with. What do you think?

 

[Lala]

Hi Lala,

I've been taking rifampin for just over a year, I'm still on it. But since I stopped bactrim the bartonella is getting worse again. The symptoms had basically gone, I was actually wondering if it was cured. Since removing bactrim I have had a rapid and very bad relapse. My brain is still reasonably OK so far, but neuropathy is very bad and my sleeping has gone absolutely crazy, I can hardly sleep at all though I am exhausted, and my skin is itching like mad all over and my knee and ankle joints are so bad the next door neighbours can hear me walk up the stairs!

Dr N did tell me the stuff I am on now also combats bartonella, but it seems in my case it is not strong enough. I do agree that bartonella really is the bastard to kill off. I am now thinking its symptoms are worse than chlamydia pneumonia and mycoplasma, (except for the heart problems, which were frightening me after all the serious heart trouble and heart surgery I have had, and which have now almost gone.)

What do you take apart from rifampicin?

The stratton protocol is the one I am on now, but I don't have flagyl yet, and Dr N is not keen to give me that, he says it is too heavy for the liver. He says we should regard that as the absolute last resort because many people ca be cured without it. Did you have flagyl to eliminate mycoplasma, or did you cure it without that?

Xrunner, what protocol did you use to eliminate bartonella?
I really do think that is the one to kill off first. Quite honestly, I think if I could eliminate that one, then borrelia alone would be much easier to live with. What do you think?

I am sorry to hear you have such a bad experience with bartonella, too, Athene. Now I think, bartonella is absolutely the worst enemy from all these bastards. My LTTs for borellia recently went down to 0, my CD57 increased to normal range. My mycoplasma titers went down after 3,5 year of Wheldon protocol and I was on full combination, which means, doxy+azi+pulses of metro (tini)+NAC. Since then my mycoplasma titers have never increased and I also haven't had any specific symptoms of myco pn. Then I added rifampin for whole year, but even this heavy combination was not enough to eliminate bart. Now I am on mino+azi+rifa+artemisia for bart. My neuropatic pain is improving after long time, but I still have bad brain symptoms- mainly confusion, some depression and anxiety, which Dr.N thinks is directly related to bartonella induced encephalitis. Sooo, I think this is very hard to kill.

Regarding question about metronidazole, I have never had any issues with the liver. I think it is ok., when one takes pulses and not continuous treatment. Moreover these drugs have big advantage that you can stop whenever you feel bad or if your liver enzymes go up. Resistance is not something to worry about. I had been taking them for years in such a way.

 

[xrunner]

Athene,
As regards Bartonella, I found some articles written by Dr James Schaller helpful (he's published a book on the topic but it was too expensive!). He was one of the first to bring up the biofilm issue and I think that idea made a difference.
In terms of abx, I first tried Ciprofloxacin and I felt it was kind of effective but after about ten days had to give it up because it was causing inflammation in my tendons.
Then I tried with Minocycline + Rifampin which did not do much; except that the Rifampin got my Vitamin D levels to near zero (the doctor didn't know it does this!).
Then, about a year and half ago I went back on to Minocycline + Rifampin (half the previous dose) + Azithromycin but adding in biofilm breaking enzymes and it worked. I used to get horrible shooting/vibrations down the nerves of my legs and arms, and the restlessness etc. but I haven't had any of that since.

 

[Lala]

Athene,
As regards Bartonella, I found some articles written by Dr James Schaller helpful (he's published a book on the topic but it was too expensive!). He was one of the first to bring up the biofilm issue and I think that idea made a difference.
In terms of abx, I first tried Ciprofloxacin and I felt it was kind of effective but after about ten days had to give it up because it was causing inflammation in my tendons.
Then I tried with Minocycline + Rifampin which did not do much; except that the Rifampin got my Vitamin D levels to near zero (the doctor didn't know it does this!).
Then, about a year and half ago I went back on to Minocycline + Rifampin (half the previous dose) + Azithromycin but adding in biofilm breaking enzymes and it worked. I used to get horrible shooting/vibrations down the nerves of my legs and arms, and the restlessness etc. but I haven't had any of that since.

Hi Xrunner, how long had you been on your last bart. combination?

 

[xrunner]

Hi Lala,
Three courses of three weeks each, with breaks in between of about a week.

 

[Athene]

Thanks for all this info folks, I need to discuss this with the doctor. I am thinking I might do best to switch back to the anti-bartonella campaign and try adding in enzymes.

And which biofilm enzymes did you take Xrunner? I tried some a while back but got a terrible reaction. I think some of them are extracted from mushrooms or mould, which I am allergic to - perhaps that was the problem??
How much vitamin D should I take to counteract this effect of rifampin? I take 1000 IU daily, is that enough? My doc has never mentioned that it kills off vitamin D, maybe he assumes I am OK since I live in Sicily!!
And could you link to any of the articles that you mentioned?

 

[Lala]

Thanx, xrunner.

How long had you been on bartonella combination before you relapsed, Athene?

I took some enzymes and anti-biofilm things like DE, too, but it did not helped with this problem.

 

[Athene]

Hi Lala,

I was on the anti-bartonella combinatin for almost a year, basically free of all bartonella symptoms (as far as I know the symptoms), and started to relapse literally within 3 weeks (maybe even less) of switching to the anti-chlamydia and mycoplasma protocol.

I hope xrunner can tell us more about the biofilm treatment, I am really wondering if that may be my only hope. What do you think?
Has Dr. N told you how long he thinks it should take for you to eliminate bartonella on this treatment?

 

[Lala]

Hi Athene,

whole year, that is a lot! I was told it should take 4-7 months of this combination, but I postponed my start because I went through a lot of personal stress and did not want to be completely nonfunctional during that time. Also I had problems with high doses of minocycline initially, that gave me some side effects, so Dr. N recommended me to stay on lower doses. He told me it should work equally well but it will take longer time to treat.

I think it very depends how long we have had this bastard and I have had it almost whole my life.

For biofilms I tried Similase, Betain HCL, Curcumin with natokinase, DE and vitamin D. I rather avoided things like Interfase plus because I still have amalgam fillings. Unfortunately it did not improve my bartonella symptoms, but of course everybody is different and I do not say it does not work.

 

[xrunner]

I've experimented with at least a dozen different enzymes. The only two that work for me are Boluoke (lumbrokinase) and Clotinase Forte (nattokinase). Unfortunately they are expensive so in the past I tried others, cheaper brands, but they're not so effective and give side effects, the lumbrokinases in particular. At the time I did the Bartonella protocol I was on Boluoke. Clotinase is very strong, seems to go deeper and anybody who wants to try it I'd advise to first try a weaker strength of some other enteric coated nattokinases. I'd add in some Edta but I can't take that risk at present as I'm going through amalgams removal.
If they work for you you'll know it. For me that meant feeling extremely fatigued, achy all over and finding difficult to go out for simple walks.
If you decide to try let me know and I'll tell you doses etc. to get the best results.

Athene,
Rifampin seems to accelerate the metabolism of Vit D. My doctor did not know. I found out by chance as I always had healthy levels until I had a blood test which showed a severe drop in a matter of a year after starting that abx. Subsequently I read something about this potential effect on the internet.
I can't take any Vit D as it gives me inflammation. I get what I can from the sun.

 

[Athene]

I've been on plaquenil for a long time and it does work well. I cannot remember exactly what it does beyond the same effect as artemisia, since sadly one of my many symptoms is LBS (Leaky Brain Syndrome).

The dastardly trio of infections you listed is what I have, with mycoplasma and a few others too. Having bartonella along with either chlamydia pneumonia or mycoplasma pneumonia is a severe bummer, because you need bactrim included in your protocol to beat the former, and azithromycin to cure the latter - but you cannot take them both at once.
Therefore you have to decide whether to go relentlessly against one infection till it is eliminated, then work on the other, or keep alternating between the two (one month at a time). I had a long run of attacking bartonella, but the chlam and myco got too out of hand so I'm attacking them now... but several long-gone bartonella symptoms are resurfacing, as the doctor predicted. Aargh! It's like playing a game of snakes and ladders.

I sudddenly remembered what else plaquenil (also called hydroxychloroquine) does, if anyone is interested. It just fell into my brain today!
It helps deal with secondary porphyria, which is one of the extremely horrible symptoms of chlam pneumonia.
It also helps with Lyme disease, by having an anti-spirochete activity, reducing inflammation (especially in joints) and by making whatever antibiotics you take penetrate right inside the cells.

Thanks Lala and xrunner for the extra info.
I am still scared of enzymes, especialy the startup "herx" you desrcibed - but I want to try anything that could help, so I'll ask my doc if they would be safe along with what I am already taking. I'll come back to you with what he says, for your extra insight, if that's OK!

 

[mrpanoff]

Has anyone done this?

http://forums.phoenixrising.me/showthread.php?15747-M-Fermentans-test-at-UNEVX

 

[runner64]

Has anyone done this?

http://forums.phoenixrising.me/showthread.php?15747-M-Fermentans-test-at-UNEVX

Ironically I JUST registered here a few hours ago and was just accepted now to post. I was looking for support forums that use antibiotic treatment for these diseases and found this thread when I was googling. Hi guys.

I was diagnosed with Sjogren's just 2 weeks ago and have knee joint inflammation and bone pain and chronic fatigue symptoms. I feel way more like chronic fatigue with joint pain that's why I'm here. I dismissed the Sjogren's diagnosis the "rheumatologist" gave me after telling him my symptoms only to have him twist my answers into things that fit a textbook answer to fit a drug with and no answers as to causes etc. He twisted everything I told him as well as saying I couldn't be physically feeling in my brain and head wise, what I said I was feeling, and then he'd tell me his interpretations. Very condescending and patronizing. I'm a runner fitness girl and was fooled once before from the mainstream community and got very sick as a result of it so decided to fish for answers not being able to run again, and feeling mentally incapacitated, and feeling hit by a mack truck a huge motivator. I got online and researched Annals of Rheumatic Diseases and more and found Dr. Nicolson's site after connecting dots from the research of everything I'd learned.

So yes, I have contacted him, my blood is being drawn Mon at the lab where I live in B.C. Canada, and being sent to Nevada. I got the Unex kit from Nevada but I couldn't send it back down Fri. as it can't sit there over the weekend unattended obviously. Lab down there closes Fri.

I have started his doxycycline protocol Fri. of 2x 200mg every morning as well as the "combining" treatment he recommended. I thought I'd have to wait to start antibiotics so I could get a clear draw from the blood as he said in info on the site one has to be off antibiotics 4 - 6 weeks before drawing for a clear picture. I just now learned EXCEPT if you have been on antibiotics UNDER a week. THEN you can get a blood draw as the antibiotics in that timeframe cause the mycoplasma to start immediately shedding in your blood stream and my be easier to detect.

Here are one of his answers to my questions about that as I'd "not thinking" taken one doxy Fri before drawing the blood this coming Mon and thought I may have messed up results when I realized what I'd done.


This is from Dr. Nicolson yesterday.

"Actually, a brief course of doxycycline (less than one week) actually
increases your chance of having a positive blood test. The reason for
this is that the initial impact of antibiotic stimulates the release of
the microorganism from tissues and cells. However, after one week the
blood levels decline dramatically and then false negatives are a problem.

So you can start your antibiotics if the blood is drawn on Monday. The
instructions for taking doxycycline are attached. To reduce Herxheimer
reactions follow the instructions in the attachment."

- I had a deflated salines implant that was leaking inside me quite sometime and by the time I realized it, I am thinking this is why I am sick. Many implant women are being diagnosed with these diseases and FDA is dismissing testimony as I type. Explanted Oct., 25 2011. Symptoms of tinnitis and broken sleep, memory failing just starting, Oct 2010 one year before explant when I realized I was leaking. July 2011, 3 months before explant, joint and bone pain, flu like, sweats, stuttering, have no memory, rapid thoughts, blurry vision, coated tongue not candida, ears feel full sticky deep inside, weak, exhausted and more. Ironically he has many women not just silicone, but saline implants like me contact him. I found "abstracts" proving bacteria growth in breast implants and a variety of implants PERIOD. He has found women with implants tested positive for mycoplasmas. I have super nuero symptoms and the physical feelings in my head are awful along with the rest. I'll start a thread as I'm getting carried away................I just never thought this type of thing, exhisted. I'd never payed any heed to what Chronic Fatigue was. Holy smokes..............I'll let you guys no, what my tests yield. It was the mycoplasma test kit for $395.00 that tests for M fermantans,M hominis, and M pnuemonia that I'm being tested for. Total desparation for answers.

Other than 2 days with this new doxycycline treatment, I am not on any other pharmecueticals. I eat clean and added vit "recipes" he recommended on top of what I'd been taking.

Sorry for interrupting this thread with my long winded answer.