Lyme community says we all have it

[Valentijn]

I do not doubt that treatment for Lyme helps in some cases. So does treatment for herpes viruses etc. So does Rituximab. Figuring out which goes with which is the trick, and also figuring out how to turn treatment into full cure is still proving elusive. Some make it to full cure, many get 90% of the way there, but we need all of us better.

My best guess would be a variety of infections triggering long term immune dysfunction, resulting in those infections becoming chronic. This would make sense from the point of view of those infections ... they want to stay active. And this immune dysfunction then allows other infections to emerge from latency or to not be cleared properly when acquired after the dysfunction has set in.

So I think people can have multiple infections, but just one one causative/triggering infection with the rest being opportunistic. Treating the opportunistic infections may result in improvement and the resolution of certain symptoms, but is unlikely to have a permanent effect. But treating the underlying infection could have a much bigger and even permanent impact.

Outside of the context of ME, many people have reported complete recovery from Lyme with appropriate treatment. There's various sports stars, it's often in the media, and I know at least one person personally who had somewhat chronic Lyme without ME and has recovered from it and is now quite active and healthy.

But do ME patients with Lyme recover their functionality completely? The answer seems to be "no", though they do improve a lot, to the point that they can work and raise families, etc. Does that mean that Lyme isn't the underlying infection, even when it seems to have been the one which was acquired shortly before symptoms began? Was it merely a lurking latent infection which was allowed to emerge due to some other factors? Was it the underlying infection, but symptoms don't completely disappear after treatment in ME patients due to permanent damage caused while the infection was active?

So I'd say that it is possible that Lyme is the ultimate cause of ME/CFS for everyone who actually has ME. It's possible that we toddle along without major problems for however many years until hit by an additional infection (Q-fever, EBV, etc) which stirs up a shit-storm in combination with the underlying Lyme infection. But I think it's at least as likely that different infections are also completely and independently causative of ME, in the abscence of Lyme.

It'll be interesting to find out some day

 

[Helen]

Over some twenty years ago I was bitten by a tick and got a big nice red belt around the spot where it sat. I was put on penicillin for some time. These days I have a handful of theories what is the underlying cause of my situation, and lyme is part of the speculation.

My doctor says the only thing he can do for me is take a blood sample that will say if I ever had (and still have) lyme. Which, of course will not be of much help to me. What do you people in here suggest be the best way to further investigate the possibility of having an active Borelia bacteria in my system?

I had good help from repeated antibody testing. If the first antibody test is high but not enough to tell there is an ongoing infection another test (preferably) after antibiotics might show lower antibodies or as in my case four times higher. BTW Infectolabs LTT didn´t show Lyme during the same time.

I would recommend even a "simple" antibody test as a starting point. As always, get the numbers from your doctor/lab, not only normal or not normal as result. BTW Infectolabs LTT didn´t show Lyme during the same time.

 

[justy]

I didn't get the impression that KDM thought M.E was actually Lyme - even though many of his patients are being diagnosed with it.

My immune system has always been crap - and that may explain why I caught Bart, Cpn and possible Lyme and cant clear them, then more viruses and infections have piled on top (in my case) so that immune dysfunction becomes worse and worse and less and less able to clear anything. Now I also have some kind of mild autoimmune component an top and my thyroids not doing well.

KDM's view is that we treat whatever can be found and treated- that way we can have an improvement in functioning, which for some results in a complete remission, for others smaller improvements.

I am quite clear at this stage that my immune system is in such a mess that I will continue to get lung/chest/bronchial infections which will cause more and more scarring in my lungs until I end up with pneumonia or being hospitalised and eventually it will probably kill me. The reality is that I have chronic CPN which can be and should have been treated by now - many people with Asthma and COPD see an improvement from treating Cpn and im shocked no Dr in the UK has ever tested me for it before.

Sorry, way off my own topic. But there seems to be a lot of people on this board recently saying there is no point in seeing an M.E specialist - that people just spend loads of money and don't get better - but I already have some answers- and many patients who have seen top dcs do seem to have improvements when the doctor looks at their individual pattern, rather than having a one size fits all approach.

 

[svetoslav80]

Many in the lyme community insist everyone with ME/CFS, fibromyalgia and the like all likely have lyme and don't know it.
Many of the symptoms do overlap and many with lyme went undiagnosed or had previous diagnosis like ours.
Now I'm panicked that what if it is lyme. I had the blood test come back negative but so do many who have lyme. I just want to be confident in knowing what's wrong with me so I can begin a game plan and that's different if it's lyme, fibro or ME.

Many in the lyme community insist that everyone with any symptoms have lyme. A friend of mine who had lyme (yes, he had it for real) convinced me that I had lyme. Even though I've never been bitten by a tick or had the rash. So I've been there too. I did a test and it was negative. I took doxycycline for 2 weeks and ... my health problems didn't improve. So don't panic, be realistic. And last - fibromyalgia pain is not typical for lyme disease.

 

[brenda]

I had immune/endocrine dysfunction symptoms, and all of the other ME symptoms from as long as I remember but was not diagnosed with anything, being the UK or indeed knew that how I felt was not normal as my family said I was a hypochondriac but it was all due to mercury poisoning I found out later. THEN after the assumed bite, (I was walking in a wooded area) and worsened considerably, ie almost bed bound that I got a diagnosis of CFS and it was years later that I suspected Lyme and was correct. I have had zero tests or medical help at all until a brief foray into the Breakspear, where I received tests but nothing that helped and now it looks like my funding has been pulled before any treatment for Lyme.

 

[fibrodude84]

I did have a bulls eye rash but it was in NYC so maybe it was a spider bite? The blood test for lyme came back negative.

I thought fibro symptoms do mimic lyme like the neurological prob.

 

[Ninan]

I don't know about lyme. As adrenal fatigue it seems like something that more or less everyone is supposed to have and that can cause all sorts of symptoms, but noone can really prove. Not very helpful. Not meaning it doesn't exist or that you can have it even if it doesn't show up in testings, but this "everyone who's tired" seems a bit far fetched to me.

I got a bad first reaction from starting with doxy. High fever etc. But I'm not sure that necessarily means herxing or lyme.

 

[Valentijn]

I got a bad first reaction from starting with doxy. High fever etc. But I'm not sure that necessarily means herxing or lyme.

Fever is a major part of the Herxheimer reaction. So it could have been that.

 

[Ninan]

Fever is a major part of the Herxheimer reaction. So it could have been that.

I know. It was a typical herx but then I have weird reactions to a lot of stuff these days. I think it's hard to say what's what.

 

[justy]

I must apologise for saying this was my thread - weirdly I thought I had posted this response on another thread. Not off topic at all then.

 

[justy]

MY LTT for lyme was negative - as was all other testing. BUT as I have Bartonella and Cpn, and immune dysfunction my doc thinks on clinical picture I do have Lyme.

I took a week long course of Doxy a couple of weeks ago for a chest infection (it targets Cpn) and it did work, whereas the amoxy the week before did nothing. After about a day or so on the doxy I developed an internal tremor that was similar to what I had years ago when I was first ill - I also felt really crappy and spaced out and weird. I think this may have been a Lyme Herx as internal tremor is a Lyme symptom.

 

[Daffodil]

There are alternative views of course. Based on the same evidence someone might say that most of these diagnosed with Lyme do not have it, they used to and its gone, and they are dealing with post-Lyme disease. Just as those with enterovirus can have post-enteroviral disease, including post-polio which is an enterovirus. Similar arguments exist for Q fever and SARS, and there are probably more.

Then there is the possibility that many post-infectious syndromes are really some kind of autoinflammatory disorder, such as limbic encephalitis under the microglial theory. Or that the pathogens no longer matter except that lingering pathogens that cannot get cleared keep activating the immune system, and this activated immune system is the real problem.

While there are good arguments for Lyme as a trigger or for persistant triggering, its less strong for long term causation. Similar arguments apply to herpes and enteroviral infections, plus Q fever.

I prefer to say we just don't know yet. We all need better science. We should all be fighting for better science into all of these infections and their consequences.

the post-infectious syndrome with SARS is limited...it doesn't last forever. my doctor was one of the main doctors who worked with SARS and still conducts studies on the affected patients.

 

[Daffodil]

Is the igenex test the same as infectolab's? Any point in getting a test done at infectolab if you have a negative (or a positive) from igenex?

Thanks

Igenex sends the blood to Infectolab for the LTT test

 

[rwac]

I used to consider myself part of the lyme community and I have to say that they're overly focused on infections. I now believe that infections are secondary to the lowered metabolism making people vulnerable to infections.

That is, something is making people extra-vulnerable to infections.

 

[JAH]

Igenex sends the blood to Infectolab for the LTT test

Thanks @Daffodil. Do you know how that works? Can I get my blood drawn at igenex and they will take care of shipping to Germany? I might do it - live close to igenex, and actually had my blood drawn there once, and have also used their kits a couple of times. Several negatives and one positive, tough time with antibiotics, so not sure if I want to go down that road again...thanks again, JAH

 

[Daffodil]

Thanks @Daffodil. Do you know how that works? Can I get my blood drawn at igenex and they will take care of shipping to Germany? I might do it - live close to igenex, and actually had my blood drawn there once, and have also used their kits a couple of times. Several negatives and one positive, tough time with antibiotics, so not sure if I want to go down that road again...thanks again, JAH

Hi JAH. Yes, Igenex takes care of the shipping to Germany.

I know what you mean....everything seems to help a little, then stops helping. Antibiotics are hard on the system, too.

 

[Cheesus]

The Elispot-LTT is supposed to be a lot better than the traditional tests that tend to have a lot of false negatives. If that one came up negative, you could be pretty damned certain that you don't have Lyme

But what happens if one comes back positive? A false positive is pretty much as bad as a false negative. I heard a LLMD on Chris Kresser's podcast talking about the difficulty of assessing lyme and the unreliablity of pretty much all testing methods. Even if I found something reasonably reliable, I have virtually zero chance of finding an LLMD in the Northeast of England.

This is what has deterred my from getting any testing done. I cannot be at all confident in the results. I saw that one study that was posted on here a whileback regarding infectolab indicating 89% accuracy, but is one study enough? How can I know it is reliable?

I really need the answer to these questions before I could ever take the plunge. Am I missing some crucial bit of evidence?

 

[optimist]

As I read trough an extensive lyme symptom list yesterday, I must say - there practically seems to be no difference to the list for ME...

 

[alex3619]

As I read trough an extensive lyme symptom list yesterday, I must say - there practically seems to be no difference to the list for ME...

Symptom lists are often misleading. There are not big differences between ME symptoms lists and a combined folate and B12 deficiency symptom list. Yet I would not like to claim everyone with these symptoms should only get a few supps instead of real testing and the option to try a variety of treatments. Its the lemon rule far too often - the only way to be sure is to try it and see.

 

[Ninan]

Doxy also seems to be an immunomodulator. It makes me better within just 12-24 hours and I have to keep raising the dose to keep the effect. That's hardly because I get rid of viruses super quickly. So the initial reaction that so many if us experience could be a reaction to that rather than a proof for lyme.