Link: Lyme, Chronic Fatigue, Serotonin Receptors

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http://www.envita.com/lyme-disease/finally-one-link-established-chronic-fatigue-syndrome-cfs-lupus-fibromyalgia-autoimmune-disease-chronic-lyme-disease/

[looneymom]

Thanks for posting this. My son has been checked for lyme. The cardiologist is really thinking it's autoimmune and he is running more blood work to look at some other things.

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Its infuriating when the tests for lyme and other things such as celiac are unreliable. It sends us chasing down

rabbit holes.

For most of us dysautonomia isnt an isolated condition. You've got to know all the different triggers, flares, causes,

and inter relationships to be making any progress.

[ramakentesh]

Simplistic was an accurate description. Also ignoring most of the science.

[ramakentesh]

When you say that you have to know all the flare triggers, causes to make any progress don't you think your making an assumption about the validity of what your reading, its application to your situation and your ability to decipher the relevant peer reviewed science from the opinion and conjecture?

[issie]

We don't have all the science figured out and sometimes opinion and response matter just as much or more then the science.(Now Rama and I both are talking in riddles. LOL That being said - I think if we do address our immune system and it's response we will get some good results. I found that with myself I do test positive for a protozoa and also a co-infection associated with Lyme disease. The treatment for those two things address the immune system - primarily. My addressing the immune system and the way it detects these organisms (and other things) will help my body all the way around ------and IS! Whether or not this is my primary "cause" ---not thinking it is. But, the way it's addressed by making the immune system detect things that it has just let pass by un-noticed is making other things work better. One of the other things addressed with this treatment is fibrin in the blood stream. With Lyme disease or protozoa problems there is a substance called a bio-film that these and bacteria and virus live in. With breaking up that substance and creating a less gummy environment in the blood stream ---the hope is to also improve blood flow. There are several things that I'm doing for this - one being a very strong enzyme that breaks this up. I do believe that the direction that I'm going with diet and supplements and meds to address these things ---for whatever reason (protozoa or immune system) these things are working for me. I'm a whole lot better. It is a slow process and can't be done fast - but, my improvements are very noticeable and I'll hold the course and see what time brings. It can't hurt me (as long as I take it slow) and it for sure is helping me. Issie

[issie]

Personally, my feelings is if there is Lyme Disease or a protozoa issue - that is probably an effect not a cause. Why do some have the problem and others do not and maybe you both have been bitten by a tick or mosquito that had the infections? The immune system isn't taking care of the problem in the first place. If the immune system detected and eliminated the problem - then there wouldn't be one. Same with virus, bacteria etc. Get the immune system to functioning better and there may be less issues. If our system was detecting the dysfunctions properly - there wouldn't be an attack on us and what should be protected --the attack would go towards the foreign and what shouldn't be there. (Just my opinion.)

Issie

[ramakentesh]

What I tend to find is that patients often ignore peer reviewed science for the stuff that has very little research support and sometimes doesn't even follow basic fundamentals of physiology.

[issie]

What I tend to find is that patients often ignore peer reviewed science for the stuff that has very little research support and sometimes doesn't even follow basic fundamentals of physiology.

I think it is important to look at physiology here - but, the question was on thoughts about Lyme. It is a given that there is a blood flow issue involved with POTS. We have to get that issue corrected. If we can support the body and get it to working better on it's own ---may be no need for medicines to help with that. But, for now - until the dysfunction is corrected ---we need the bandaid. Get the blood to the heart and brain ---primary issues. Not ignoring those things - just injecting some other possible connections.

Interesting that even the web and DINET list Lyme as a possible cause for dysautonomia

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989654/

Here is one article connecting POTS and small fiber neuropathy to Lyme.

I must admit in trying to find peer-reviewed articles - there are not many. There are some connecting Lyme to connective tissue disorders and to skin rashes and lung disorders. But, not that many connecting it to dysautonomia. There are however, many forums and doctors who are writing about their findings and connections to Lyme and dysautonomia- but, not peer-reviewed articles. One site has the same questions that Rama has in regards to it ---that person thought that late stage chronic Lyme was being mis-diagnosed and that it should have the dysautonomia DX. But, do they go hand in hand or are they a separate thing? That is the question. Is it just a finding that some people are found with active infections who also have dysautonomia? Or is there a connection? Not sure we will know. But, since I have documented positive IGG testing for these organisms ---for sure working on controlling them is in my best interest. May be just a peripheral finding - but, I've been doing the protocol for this for 4 months now and I'm slowly seeing some improvements in all areas of my health that includes POTS.

Issie

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Without getting too specific I think its important that POTS sufferers are very aware of the various other disorders

that often go hand in hand with the disease.

Whether it be disorders in the sympathetic nervous system, endocrinology, viruses, deficiencies, apnea, pathogens,

whatever.

If youre going to be a student then you should be constantly taking in potentially relevant information.

[issie]

If youre going to be a student then you should be constantly taking in potentially relevant information.

I always try to be open minded and not discount any possibility. Science and medicine are always changing and improving. It will be interesting to see with time what the future holds and what different reasons we find.

Issie

[ramakentesh]

We don't have all the science figured out and sometimes opinion and response matter just as much or more then the science.

I think informed opinion and research-backed opinion is more valuable - respectfully - than patient hunches or speculative theories without research. Im not talking specifically about Lyme however.

And when you say 'we' do you mean patients? or researchers?

If youre going to be a student then you should be constantly taking in potentially relevant information.

Sure, and part of that is the ability to critically analyse and reflect on the probability, reliability and research-basis for that information. A paper in a well-regarded peer-reviewed journal outweights the evidentiary basis of a random MD's opinion on a website.

I just find it strange that new papers on the possible etiology of POTS are published constantly in medical journals like Hypertension and Circulation - some are hampered by selection bias, some by small cohorts and some by other issues, but they are peer-reviewed and the work is conducted by qualified and intelligent people, yet people on patient forums tend to largely ignore this stuff completely or talk about it as if it and speculative theories have the same validity or evidentiary basis.

An example would be the recent CCSVI stuff going around in relation to POTS and Dysautonomia. There is ofcourse no research that even suggests that angioplastic procedures of the jugular veins has any effect on dysautonomias and the doctors involved can not provide any explanation of how it could benefit any of the suggested etiological mechanisms of POTS yet desperate people are desperate people...

I dont completely discount any theory and i dont claim that science has yet revealed all the answers, but I also dont accept that the view that the conditions described in that website are definitively connected with POTS and i certainly dont believe that the majority of POTS patients have underlying Lyme disease.

[issie]

And when you say 'we' do you mean patients? or researchers?

I also dont accept that the view that the conditions described in that website are definitively connected with POTS and i certainly dont believe that the majority of POTS patients have underlying Lyme disease.

When I say "WE" - I mean people and that would include patients and researchers.

And I would have to agree that probably "Most" POTS people don't have Lyme ---but for those that do, you wonder how much of a part it does play in their illness.

Issie