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

[Scotty81]

I am looking for some guidance from the many individuals who may have been down this path before. My teenage daughter was diagnosed with CFS, FM and POTS. Her allergist did identify mycoplasma as equivocal in the summer and slightly positive in the fall. In trying to read up on this, I saw a body of literature, mostly put out by a PhD researcher, who said that untreated mycoplasma infections were found in many CFS patients, and that the treatment was antibiotics for about a year. This all seemed plausible, to me a layman, but someone with a general scientific background.

Just recently, we took our daughter to someone who I would definitely consider to be a CFS specialist. When I asked about whether mycoplasma could be the cause of a lot of symptoms, he immediately dismissed this as a cause. When I pressed him further on this point, he said that he did not believe the literature on this, and that what was "out there" on this was biased in favor of special tests that he said this one researcher was promoting.

If he is correct, then I am glad that he warned me to steer clear of this, and of giving my daughter antibiotics for one year, which can have their own side effects. However, if he is incorrect, then we could be missing something here that is more directly treatable. So, my concern is that I don't know who to believe. The CFS specialist certainly is someone who is well regarded in the CFS community, so on one hand, I would tend to believe him.

To test that hypothesis, I looked for literature that was produced by someone OTHER than that PhD researcher. There wasn't much, but I have found some reports appearing in various places. So, I have this nagging feeling that I need to be absolutely sure that mycoplasma is not an issue that we need to deal with.

Have any other CFS patients had experiences that they can relate to here? Has anyone seen a physician with more of an infectious disease background that could either support or refute what the CFS specialist said? Interestingly, the allergist, who we haven't really talked to much, but whom I personally regard as someone who keeps up on research, wants my daughter to keep taking a round of antibiotics (doxycycline) until there is no sign of infection. Although this doesn't say mycoplasma is causing CFS, I believe he is implying that her immune system will be better if there is no infection.

I'd appreciate any advice other members of this forum could provide.

Thank you.

Scotty

 

[xrunner]

The guy who's done most research on this is prof Garth Nicolson, not sure whether you were referring to him. As far as I remember, he's won a few legal cases against the US govt, one relating to Gulf War Syndrome (if I'm not mistaken). His daughter got it and later his wife also. He found out that many cases were caused by a form of mycoplasma.
Regarding your daughter, there are CFS specialists that have mycoplasma tests, amongst others, routinely done, one is Dr Lerner. http://www.treatmentcenterforcfs.com/FAQ/index.html. There are probably others I don't know. Any Lyme literate doctor, who follows the ILADS treatment guidelines, would probably do the same.
As regards long-term antibiotics, I've been on a combined abx protocol for over two years on and off and I've never looked back (and that against the advice of four CFS/infectious disease specialists,one of whom told me I was mad).
all the best

 

[Scotty81]

xrunner,

Yes, that is exactly who i was referring to. I don't want to repeat what I was told about that person's research though. Were you ever diagnosed as having mycoplasma yourself?

Thanks,
Scotty

 

[mellster]

Try and find a literate doc in that field for proper testing - while it is possible equivocal or slightly elevated values are common in a lot of healthy controls as well. Don't use ABx unless absolutely necessary.

 

[heapsreal]

I have heard alot of testing can be inaccurate, mainly that its difficult to detect but they detected your daughters. IT being a cause of cfs is hard to know unless a trial of abx like doxycycline is used for approx 6 weeks. Doses are normally started slow eg 50mg every second day and slowly built up to 100-200mg a day. Two things can indicate its working, she feels worse or she feels better, if she feels worse then dosing has to be lower and slower to try and avoid herx reaction, if she is feeling better then fine keep going with it. If she feels the same at the 6 week mark then stop, but if theres indications its working on her then keep it going for 6 months before stopping and seeing how she reacts.

Concerns of taking abx long term are potential damage to the gut but taking precautions like probiotics at night if taking abx during the day helps alot as well as taking nystatin which is an antifungal med can reduce chances of fungal infections from abx and can be taken along with abx treatment. Thats my take on it but i would definately do this under a doc who understands this treatment. I never tested positive to myco or cpn but initially when i had cfs, a 12 month course of doxy got me out of a hole, so i had something bacterial going, it wasnt a cure for me but did help at the time and it has helped others greatly but its dependent on the infection she has.

good luck,
cheers!!!

 

[kday]

Dr. Lo (the same doctor that worked on the Harvey/Lo XMRV study) worked on engineering the weaponized mycoplasma strain (mycoplasma fermantans incognitus). He has said in the past that he believes mycoplasma cause CFS. I'm not sure if is views have changed, but here is a quote from his patent:

In addition to AIDS, M. fermentans incognitus has been implicated in a number of other Disease states including Chronic Fatigue Syndrome, Wegener's Disease, Sarcoidosis, respiratory distress syndrome, Kikuchi's disease, autoimmune diseases such as Collagen Vascular Disease and Lupus, and chronic debilitating diseases such as Alzheimer's Disease. M. fermentans incognitus may be either a causative agent of these diseases or a key co-factor in these diseases.

http://patft.uspto.gov/netacgi/nph-...50&s1=5242820.PN.&OS=PN/5242820&RS=PN/5242820

I feel like mycoplasma could be the big elephant in the room that everyone is ignoring. I think it could account for much of the "herxing" people feel on antibiotics. And last I talked, Prof. Garth Nicolson only recommended testing for mycoplasma from VIPdx in Reno. The same lab that was testing for XMRV. I could be wrong, but I don't think he has financial interest in testing through them. He replies to emails so you could ask.

I know he has financial interest in NT Factor for Lipid Replacement Therapy, but independent studies (such as UCLA) have shown this to be a very effective treatment.

 

[kday]

I am not claiming to know if mycoplasma spp are the cause or not. It's so difficult to tell when treatment may not be very effective. I do wish there were more mycoplasma researchers that research how mycoplasma behaves in the human body. Instead, there is so much focus on how mycoplasma destroys experiments since they are so destructive in the lab and destroy all sorts of cell lines. Scientists routinely have to disinfect cell lines from mycoplasma with various antibiotics.

 

[mellster]

Interesting, so NT factor can help with mycoplasma infections? Didn't know that - thx.

 

[Rockt]

This isn't going to help much becasue I'm still not sure myself, but... I went to Dr. Lerner and after undergoing extensive testing, all he could find was slightly elevated mycoplasma anitbodies. Re-tested and still there, so he treated me with antibiotics for a year. No improvement. None. However, I'm pretty sure my gut is runied.

I think I'd be very careful before subjecting a young person to long-term abx. I've never heard of anyone taking abx this long who didn't develop major gut issues and all the probiotics in the world won't help once it's screwed, (I took VSL3 the whole time - didn't help). Most of the better CFS docs start with trying to fix the gut.

It's possible that many healthy people have mycoplasma as well. Maybe it's there and not doing anything. Equivocal and slightly high? Not exactly off-the-charts. I might be inclined to look at natural routes (high dose vit. C, olive leaf extract, oil of oregano) to fighting pathogens and I'd definitely have a look at Freddd's active B12/metafolin protocol - I think in a young person, it's got everything she might need to get well.

 

[heapsreal]

There would be a few people here who have avoided gut issues after long term abx, i am one of them. Like i mentioned above i used nystatin and probiotics and after the course did a short course of the antifungal diflucan while still using probiotics. I think u have to start right from the beginning looking after gut issues when u start abx, if u leave it 6 months after starting abx then probably will end up with gut issues. Also some people can be more sensitive then others. One last thing, doxycycline is commonly used in teenages with severe acne for upto 12 months and longer with few side effects. Might be worth digging deeper into that area to find any side effects of long term abx treatment. Sacchromyce bouldarri is another good natural product to use while on abx to help avoid gut issues.

cheers!!!

 

[kday]

I have had no gut issues from antibiotics. In fact, they fixed them. I herxed for a long time (maybe 8 months) and felt very sick. Then I felt sick every 4 weeks for several months. Now I no longer herx. I am not better but I'm much more stable and comfortable in my own skin. I did test positive for Lyme (ELISA and Western Blot), but I have always wondered if mycoplasma was the bigger problem. The most effective treatment was colloidal silver, but doxycycline seem to go after some things colloidal silver couldn't.

Detox was and still is EXTREMELY important. Without this I wasn't able to tolerate antibiotics and other medications that use certain hepatic enzymes. Supporting methylation and binding toxins and metals with activated charcoal and zeolite was a big help. Though zeolite is not well studied in humans and aggravated metal toxicity symptoms in a bad way the first several doses so I should put a note of caution there. Other binders weren't so effective for me but to each their own. I think the toxin accumulation may be from the liver dysfunction and dysfunction of CYP450 enzymes.

I didn't test positive for viruses, but I had great improvement with no herxing after starting Valtrex. I have tried a number of natural (supposedly potent) things for viruses (Lauricidin, olive leaf extract, artemisinin, artesunate, red marine algae, etc) and I tried the preservative BHT as well, but have notice no positive effect from these. I'd rather not be on Valtrex since it's a suppressive therapy, but I failed to notice benefits with other things.

There are 3 obvious components to this syndrome: viruses, bacteria, and toxins. I guess candida could be added to the list, but I haven't had much of a problem with it.

 

[anniekim]

Kday, did you do the detoxing from heavy metals before the antibiotics? Many thanks

 

[kday]

I did not, but if I started over that would be the very first thing I would do along with a methylation protocol.

 

[Athene]

Hello,

There are many types of mycoplasma, I assume we are talking about mycoplasma pneumonia? This is the one that causes CFS if left untreated.

I have confirmed mycoplasma pn. I had one negative test and then a positive test. If you read up on it, you'll find that all doctors who know this illness consider the lab test so unreliable that they are willing to rely on clinical diagnosis.

It crops up regularly at ILADS (Lyme disease) conferences because it is a typical co-infection with Lyme disease.

The doxycycline your daughter is on will suppress it but will never eliminate it. The right therapy is a macrolide (doxy is OK, minocycline is better long term, as antibiotic resistance is pretty much unknown to this newer generation macrolide) combined with azithromycin and plaquenil, or some other drug which will help the antibiotics penetrate inside your body cells (which is where the mycoplasma hide).
I'll PM you the exact doses and pulsing protocol if you want to discuss this with your doctor.
In some people, 6 weeks of this regime is enough, but it can take as long as 6 months and if you have other infections which are weakening your immune system, it could be a year.

I've been tackling a longish list of infections and have been on antibiotics for 15 months now. I switched to the regime above about 2 months ago to specifically focus on tackling mycoplasma and chlamydia pneumonia, which have extremely similar symptoms and react to the same treatment regimen.

My gut problems have improved greatly on this, as I accompany the therapy with high dose probiotics. Many people say that antibiotics will ruin your guts. They don't seem to be aware that having a chronic infection and being immuno-compromised will ruin your guts far more. If you are in this situation, you will achieve nothing but improvement by killing the overgrowth of harmful bacteria with antibiotics and replacing the beneficial ones with probiotics.

As has already been said, your best chance of finding a doctor who is knowledgeable enough on this would be looking for a member of ILADS. Most of the research is discussed at ILADS conferences adn published in obscue medical journals. This is because mycoplasma has already been implicated in Gulf War Syndrome - an area where researchers who stick their necks out are likely to become the victims of a witch hunt because it means treading on so many powerful people's toes.

The symptoms of mycoplasma pneumonia are the following:
chest pain (stabbing, aching, lots of different types that often come from the heart, also the rib cage)
Other heart symptoms like forceful heart beat, sometimes tachycardia or arrhythmia
feeling freezing cold even in a warm place
fevers, sometimes night fevers only, sometimes day fevers too
sweats, either cold sweats or fever
headache (sub-clinical encephalitis, this means truly awful pain that gets worse if you lie horizontally)
sore throat, tendency to loose voice if talking a lot of shouting
cough, often in the morning, dry and not bloody or productive
Chronic exhaustion due to adrenal gland damage and damage to other energy-production processes in body

You don't usually have all these symptoms at once. They come and go over time. For example, in my recent relapse I had severe cardiac symptoms but no fever at all, other tmes it has been the other way round. I had this for 26 years without ever losing my voice, now for the last 2 years I cannot talk more than half an hour without going hoarse.

I have tried to condense as much useful info as I can which I have learned from my doctor about this. If you want to ask other questions, I may be able to give other info.

 

[Francelle]

I am another person who has had positive Mycoplasma Pneumoniae results prior to the development of M.E.

2005 October - developed a terrible cough. GP diagnosed Mycoplasma Pn. and ordered Doxycycline for two weeks, this was useless. Cough continued for ten months.

Hospitalised in August 2006 given five antibiotics, both oral and intravenous. Very sick. Cough improved.

2007 developed peripheral neuropathy in July, then on 3rd August 2007 developed M.E. (although at the time didn't have a clue what it was). Many symptoms including some gut symptoms.

2008 developed cough again for eight months. Tested again for Myco. Pn and positive, GP doctor shocked as felt it was impossible to be still positive. Eventually hospitalised again. One short term antibiotic prescribed as well as pulmonary support.

Early October 2008 developed Gastroparesis (severe gut dysmotility).

Mid October 2008 started Azithromycin, completed a four month course. This made a tremendous difference to my cough and stamina.

I am deeply suspicious that Myco.Pn. had something to do with the onset of M.E. for me. I am not necessarily convinced though that antibiotics (short term) had to do with my gut problems although have no proof of this.

Unfortunately I have not had another follow-up Myco. Pn. titre done since mid-2008, so despite my cough having improved and getting more stamina since the antibiotic, I don't know whether I am clear of this 'bug'.

 

[xrunner]

xrunner,

Yes, that is exactly who i was referring to. I don't want to repeat what I was told about that person's research though. Were you ever diagnosed as having mycoplasma yourself?

Thanks,
Scotty

No Scotty I wasn't. I was diagnosed with chronic Borrelia, Bartonella and likely Chlamydia Pneumonia infections.
Like previous posts I have never experienced any gut related problem from taking antibiotics and I usually take at least two at the same time. But of course I take measures, probiotics (hundred of billions several times a day), diet to help good bacteria take a hold, etc. If anything, my gut function has greatly improved, not to mention the fact that I went in a couple of years from being housebound to being able to work out in a gym.
I also found minocycline much more effective than doxycycline (don't understand why doctors insist with the latter) and azithromycin.

I found antibiotics essential for treating my infections whilst all the natural methods I've tried proved quite disappointing.
Having said that, antibiotics may not be sufficient by themselves and at some point they stopped working for me so I had to adjust things, and certainly there are natural things that have made antibiotics more effective. If I remember well, Nicolson has a protocol that goes beyond antibiotics, and talks about immune support, heavy metals etc.
There are natural treatments for mycoplasmas but I don't have experience with them. A friend of mine who had it, swears by an amazon herbal mix sold by Raintree but he was also on abx (http://buhnerhealinglyme.com/?s=mycoplasma).

All the best

 

[Athene]

Hi xrunner,
Have you ever taken the herb artemisia along with the antibiotics? My doc prescribes this and insists it is an essential part of the protocol, to make the antibiotics work, by letting them prenetrate into the cells. (Plaquenil is the alternative that I am on at the moment, i'm using that as it kills parasites too.)
Athene

 

[xrunner]

Hi Athene,
yes I tried both Artemisia and Artemisinin but unfortunately neither worked for me, with and without abx. I also tried the Klinghardt's artemisia cocktail but didn't make much difference.
The only herbals I seem to somewhat respond to are samento and cryptolepsis (antimalarial) but had to put those aside as I'm trying something new at present. I've heard of Plaquenil but never tried it. Let us know if it works well. Thanks.

 

[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.

 

[taniaaust1]

scotty. You will find that each ME/CFS specialist has his/her own theory about the things going on in our illness. Just cause one has a different theory to another specialist, it dont mean the first one is wrong. No one really knows the cause of our illness.

Mycoplasma issues do happen in some of us so if found, it may well be something which needs to be treated. I personally do what heapsreal does if I ever take antibiotics (that being I also take nystatin and probiotics also to help prevent issues from the antibiotics).

As far as antibiotics wrecking ones gut goes. Nearly all of us get gut issues as part of this illness even if we havent taken antibiotics. Those who think antibiotics wrecked their gut, may well have gotten gut issues from the CFS/ME even if they hadnt been on them.

With treating this illness, it is always a case of trial and error as no one really knows which things being treated in your daughters case are going to be part of what helps her.

I suggest to not trial to many different things at once as one really needs to know what things are helping and what arent, so one dont continue on with things which arent helping. Trialing different things at once can make it unclear what things are helping (unless they are things which are known to work better together). So I suggest to choose to go with one ME/CFS protocol or another and stick with it until it is known if it is helping or not. I personally tend to trial things for which abnormalities in my tests indicate problem areas with.