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Inflammation And Autoimmune


Angela
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There have been many cases where the doctors that treat Lyme disease and co-infections are being pursued for treating their patients unnecessarily and for longer extended periods than considered necessary. There have been Lyme doctors that have stopped practicing because of so called "witch hunts". It makes it much harder for those with a chronic infection to receive proper treatment when this happens. It is controversial for long term antibiotic treatment (given for this and things like ME/CFS and other illnesses). But, there have been many people find their lives again after this sort of treatment. (There are however, herbals and enzymes that can be/are used in addition to or in substitution for antibiotics.) Ultimately, it is up to the patient whether or not one agrees to and follows any type of treatments recommended to them or RX'd to them. We are the masters of our own bodies and we have to decide what is or isn't right for us.

Angela, this is interesting because it definitely shows a connection to inflammation and autoimmune factors. Thanks for posting it!

Issie

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http://www.avonhistory.org/bug/l12.htm

Hey MomtoGiuliana, thanks for looking into it but that casewatch is very old and from what I find after talking to several well learned references and basic googling, Dr. Burrascano won, and has never lost a case.

Below I am quoting from someone else that I thought well spoken:

New disease labels are being invented every day for different manifestations of a few microbial causes...Borrelia Burgdoferi (lyme)....different strains of mycoplasma, babesia, brucella..etc. Many of these "autoimmune" diseases are really infectious diseases. Why is it that our medical doctors...especially infectious disease specialists, do not even test for these possibilities?

Dr. Joseph Burrascano...a very well respected lyme literate doctor gave the following testimony below to the Senate Hearing Committee on Lyme Disease. Dr.Burrascano states in his testimony that he feared repercussions for speaking out at this Hearing. Well...his fears were founded. Several years down the road he was investigated by the Office Of Professional Medical Conduct in N.Y. Many activists and patients..whose lives he saved...raised money for his legal expenses. He was finally vindicated and did not lose his license....unlike several other doctors who have treated chronic lyme and were punished for it.

So, I know this is a controversial topic but one worth exploring, especially since lyme can cause pots, and many other severe dishabiltating disorders.

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Like I said, it is controversial and many don't "buy" it but many people say the treatment suggested saved their lives. I am not saying I am sold on it that everyone with pots has it because of a parasite and understanding is still somewhat in "infancy" like pots, but the treatments that have been suggested to me so far as pots meds protocol have not worked so......i think it's worth exploring other possible causes and treatment.

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Ang, Thank you for sharing! As I've posted on other topics, my journey with dysautonomia has lead to a lyme diagnosis (by a D.O., so it's not in my med records yet) along with co -infections. When I went to the D.O. it was a last resort. I was dropped by insurance, wasn't being treated and figured I had nothing to lose. Before the 1st appointment my knowledge of the complexity of lymes was non existant. I knew of a couple people who had it and did not understand the cloud of conspiracy around this disease. When the D.O. did a live blood analysis with darkfield microscopy, hooked up to a Tv so he could educate me on what he was seeing at the same time, I was skeptically. My red blood cells were not round, they were more like little porcupines, with jagged edges. They had holes and resembled Swiss cheese. I could see with my own eyes, these little corkscrew "worms " moving in and out and around the cells. They looked like the coil spring in a pen. He then explained those were Borrelia Burgdorferi, aka Lyme spirochetes. I was still skeptical, thinking everyone has these. The Dr. wrote information on a notebook page for me to come home and research, including watching the documentary, Under Our Skin. It still didn't sink in. I thought theno was no way that this would have been missed with all the tests I had dons by my pcp, neurologist, cardiologists and other specialists.

Before my actual diagnosis with pots and its friends (raynauds, eds, etfc) I would brainstorm with the docs. They were trying to figure out what was wrong with me, why a fit, otherwise healthy young female was literally detiorating so fast. Again, the possibility of Lymes was never brought up, nor was my diet. After my appointment with D.O. I researched live blood analysis with darkfield microscope. Stories on quack watch and various other places spoke of it being a scam and not Fda approved, or scientifically relied on. I discounted the stories and decided to go ahead with the treatment Protocol because it was the only thing offering me hope since my POTS crash a year and a half ago.

Now, I find it so interesting that darkfield microscope IS approved and is the preferred method of diagnosis for syphilis, which is also a spirochete protozoa, a cousin to the lyme spirochete. It is known that syphilis can be transmitted, sexually and passed in utero to a baby, in breast milk. If darkfield is accepted for that spirochete, then why not lymes? In the movie Under Our human one of the researchers found the lyme spirochetes, in human saliva, secretions and amniotic fluid. Lyme never occurred to me, because I can't remember a tick bite ever. Lyme can also be transmitted through mouse feces and urine.

Last week, I was actually cleaning my junk up that surrounds the side of bed, since it is my "mission control " and I stumbled upon my last MRI report from spring of 2012. Something caught my eye, that I never noticed before. The MRI showed hyperintense flairs in white region and the impression was that it was consistant with autonomic dysfunction. Down below it had differential diagnosis, and it listed MS and Lyme disease. I had looked at that MRI report so many times after I received it. I never gave lymes any attention because I though that would have been ruled out early on. It was not ruled out, it was never spoken of. None of the docs that saw the MRI report thought to even do a western blot (I know this test is often negative) but wasn't it worth a shot, since lyme was listed as a possibility on the MRI? I'm just saying this because lyme wasn't on my radar at all.

I am curious as to whether lymes and coinfections are my final answer though. I've been researching methylation, epigenetics and leaky gut.

Rama - I know you've disputed leaky gut before, in another post. I know it was a theory, disputed long before the discovery of tight junctions and their role of gut permeability. Now, there is so much research on gut permeability and it's role in autoimmune disease and inflamation. See - http://chriskresser.com/pioneering-researcher-alessio-fasano-m-d-on-gluten-autoimmunity-leaky-gut and http://dralexrinehart.com/nutrition-benefits/does-leaky-gut-exist/ In a different topic you explained if leaky gut did exist it would make us septic and death would occur. Isn't it interesting that symptoms of sepsis are similiar to dysautonomia? Are we living with symptoms of a lower level chronic sepsis? In sepsis blood pressure drops, resulting in shock and sympathetic activation. Major organs and body systems, including the kidneys, liver, lungs, and central nervous system, stop working properly because of poor blood flow. Heart rate increases. Sepsis is characterized by a whole -body inflammatory process.

I have been researching Nutrigenomics and Epigenetics and am interested in it's connection with the Mthfr genetic mutation causing problems with our methylation cycle. In layman's terms, I wonder if our diets combined with genetic mutations created a more permeable gut, leading to an even more toxic environment in our bodies. The toxic, acidic environment hosting a number of parasites, protozoas, viruses etc. combined with life stressers building pressure until our big boom of pots onset. This makes since to me why so many of us had pots symptoms looking back but then also had a sudden onset of major "full blown " pots if you will. Now, we know that in the case of celiac disease, gut permeability, caused by gluten leads to an autoimmune reaction. With the latest research on autoimmune pots, wouldn't it be safe to think it started in our gut? I've been curious how many of us had an episode prior to pots dx of an intestinal bacteria like c diff in my case.

I have read papers on the possibility of lymes causing the gut permeability and sepsis like process from nuerotoxins. But, for some reason I keep thinking that it all comes back to diet and stress load. That they wreaked havoc in my body creating a perfect environment for "bad guys " like lymes to take over. Something in my gut, no pun intended, tells me that lyme spirochetes are just another symptom in me of a toxic body.

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In many cases AI and inflammation are undeniably linked. Lyme disease has remained controversial but it's not an autoimmune disease causing inflammation like so many other AI Dx. (Tangent) I have read theories that POTS may be related to inflammation and after having seen many different Dx be treated successfully with IVIG (worked in hospital at one time) I'd love to give it a try but it's leap, I don't really have any concrete link and haven't heard it ever suggested. IVIG is used to treat lyme in some cases and for prolonged periods (if the doctor is willing to risk repercussions as mentioned in an earlier post).

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In many cases AI and inflammation are undeniably linked. Lyme disease has remained controversial but it's not an autoimmune disease causing inflammation like so many other AI Dx. (Tangent) I have read theories that POTS may be related to inflammation and after having seen many different Dx be treated successfully with IVIG (worked in hospital at one time) I'd love to give it a try but it's leap, I don't really have any concrete link and haven't heard it ever suggested. IVIG is used to treat lyme in some cases and for prolonged periods (if the doctor is willing to risk repercussions as mentioned in an earlier post).

Lymes does produce an autoimmune reaction and inflammation - Just google borrelia burgdorferi (lyme spirochete) and autoimmune, there are plenty of research articles on it

http://www.ncbi.nlm.nih.gov/m/pubmed/15214872/

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any parasite eradication using rife, diet or whatever can result in deadly inflammation. i think that is why it is so controversial, other than the antibiotics which Dr, Fry did not push me for whatsoever, he even gave me 3 herbals that he thought effective but he emphasized diet, no more than 20 fat grams per day. i still do not understand the adversity over this, but oh well. not many doctors are willing to take on that liability as what lyme/etc are doing.

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Nicole,

I can hardly believe the post you put up earlier today on POTS and how similiar symptoms can be to sepsis and also your thoughts on gut issues and autoimmune. I e-mailed someone last night about this. It's almost like what you wrote and what I said are the same. I'm also looking into epigenetics and nutrigentics and how the methylation process ties into all this. I was researching inflammation and one marker in particular and came upon an article on spesis and a hormone that is being experimented with to help to prevent it. I'll post this article and just throw it out into the discussion.

http://cvd.rsmjournals.com/content/1/5/14.full

http://www.ncbi.nlm.nih.gov/pubmed/16141406

http://lib.bioinfo.pl/paper.17962242 For some reason this one is not pulling up this is the one on sepsis and how this peptide might help with this. I'm not being able to get it to come up with the address however. Title is: Exogenous adrenomedullin prevents and reverses hypodynamic circulation and pulmonary hypertension in ovine endotoxamia

I was looking into things that may help with IL-6 cytokine

I'm by no means suggesting this ---just something I was researching and found interesting.

Issie

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Septis and dysautonomia are like chalk and cheese in terms of causes, characteristics, diagnosis and treatment.

Epigenetics has nothing to do with Rich Vank's methylation theories (theoryes that even he described as nothing more than theories) and it also has nothing to do with gene mutations.

Lyme longerm infection as a cause of a group of nebulus (and nearly always subjective and ambigious symptoms) remains controversial because nearly all the literature available on the issue is littered with statements that make no sense physiologically, have no real evidence base or peer reviewed research but rather just statements like 'persistant lyme causes autoimmune diseases' or 'inflammation is up' (but no description of how inflammation was measured - was it in serum? how was it measured since many markers of inflammation are local and not increased throughout the blood stream. Some inflammatory cytokines are also pro and anti inflammatory so how did the writer confirm the statement that inflammation was up?)

In reklation to persistant Lyme, when articles are published in medical journals they are nearly always written by a group of treating MDs who arent actually researchers or appear in journals that no one has heard of before.

I always ask the basics. How does persistant Lyme infection account for the 80-20 disparity between females v males in POTS and CFS? How does Lyme explain the sudden arrival of symptoms following an immuno or physical stressor (child birth, infection, stress). People reply with stuff about hormones and dormant lyme - but again none of these statements are proven. Tell me what other infectious disease has an 80% female presentation? What infections have a waxing and waning course in many?

the most worrying trend for me is the site on Lyme that attribute any random illness to Lyme such as Lou gehrigs disease. There is ofcourse no evidence for most of these types of statements and often its patients rather than trained and qualified people writing this stuff in the first place.

It all sounds to simplistic and too good to be true. And that is because if you apply many basic tests to the theory it just doesnt stack up. it amy prove to be correct in many cases but so far the evidence is not overly compelling.

Autoimmune diseases have been connected with histocompatibility genes since the early 70s and there is now volumes of published research on this topic. people with certain histocompatibility tend to develop (if they develop an autoimmune disease) a specific type of autoimmune disease). Molecular mimicry has been suggested as a possible mechanism for autoimmune diseases whereby antibodies mistake self antigens for foreign ones and there has even been thought that perhaps some infections can confuse the cell-based immune system into attack self antigens but there is as yet little evidence of this fact.

In relation to POTs and Dysautonomia - there isnt even strong evidence yet that POTS is ever an autoimmune disease. its certainly still open to debate. But assuming it is that doesnt automatically mean its caused by Lyme.

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A more interesting angle in my opinion is a model like this:

1. patient spends years and years eating poorly and consuming pro-inflammatory foods

2. By doing so, patient slowly moves his body into a position where it is less able to tolerate a significant stressor

3. patient experiences significant stressor

4. Inflammatory response

5. inflammation somehow results in modification of the sympathetic/parasympathetic balance via an epigenetic mechanism

6. increased sympathetic activity in turn increases the elaboration of pro inflammatory cytokines

7. increased inflammatory cytokines increase further the epigenetic modifications that caused the problem

8. cycle continues

Or

1. individual eats poor diet and exposes body to many inflammatory foods or stressors

2. individual slowly moves the body towards a location where the body is unable to deal with a stressor as effectively because it is already under stress from inflammatory diet

3. individual experiences a stressor

4. individual's body cannot deal with that stressor and cannot identify pathogens properly or cannot stop an infection

5. individual's immune system is overwhelmed.

5. individual's body starts shooting off autoantibodies to self antigens - their location specific to their histocompatibility genes.

6. autoimmunity

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Rama, I like your hypothesis. I think there is a good chance that what you think may be a good bit of our problems. It comes down to what my husband always says ----"Do the Basics and what you get from that is probably the best you will get." The basics are proper diet, exercise, trying to learn to handle and manage stress and try to find something enjoyable to either do or think about on a daily basis. Try to have a positive attitude and look at the glass as full and not lacking.

The main thing, we are doing, is a diet change. With that comes a focus on DOING something about things and gives a purpose and a goal and it gives you a hope for improvement. We are not just sitting by idly waiting for a doctor to tell us what to do and what new med to experiment with next. We are making lifestyle changes and that can only improve our bodies and our minds. For those of us that are writing about this ----we have been found positive for this as being "one" of our issues. I don't think it is all of the issue. But, I do think working on what I know as a problem ---will result in a positive outcome.

If there are autoimmune issues and whatever it is that caused the response, if we work on what we can and take our lives in our own hands and not wait for someone else to tell us what to do ----we at least may be able to have a positive response. I also know that I have autoimmune issues. I'm doing what I feel is best for my body and what will support it the healthiest. Only "I" can really be the master of my own body. I have an imperfect body and I can't change that. I just have to work with what has been handed to me.

I'm not here to debate what someone believes as to whether Lyme or protozoa causes POTS or plays a part in autoimmune problems. I'm here to tell others that this might have a part in some with their POTS and health. If you want to check into it and see if you are positive for it and follow the protocol that may help to bring this into check ---more power to you. But, if this is something that may help even one person ---that was my goal in posting about this. But, I'm tired of the debate - at this point. There are always the skeptics and they will always be there. I think Rama is being open minded and he isn't saying that it's not a possiblity - he's just saying that there may be more to it then this infection. I do agree with him on this. But, it might play a part in some others health and it can be passed to other family members and be transmitted during pregnancy. So, it really is something that should be looked into to see if this could be one of the links that may make some of our issues a family problem. It is known that these organisms attack collagen and it could play a part in EDS too. So, as we all throw ideas out there ---as we are all on the same path to looking for answers. It's not one to just dismiss and say it's not a possiblity. But, it's just one other idea that may lead to an answer.

Issie

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I love the Rama hypothesis...I'm pretty convinced I'm at number 5. Which model ~ I'm not sure and not liking the end result of either one...haha. Just looking for the fix. I feel like a DJ that wants to scratch across the record and start the song again from the beginning. I didn't start out a poor eater but I easily can see what my trigger was to my flares. I can control that moving forward, or so I think. But how to find homeostasis again is the question. Can I reverse what my body has been through, can i get myself back online? Or will I ever find a way to keep symptoms baseline. I have to say this journey keeps changing. The forum here is what keeps me chasing the curve certainly not ahead of it. Recent visit to rheumatology finds C3 deficit and positive ANA for scleroderma. Not convinced I'm scleroderma but probably autoimmune. We all have heightened sense of how our bodies feel b/c we are forced to listen to our symptoms to decide what we can accomplish each day. But at this point I'm just at a loss for a direction. Recently had a 5 day flare of symptoms (which included a migraine - new symptom for me) after a new food. I can't decide if I should attempt a Paleo diet, a gluten free diet, test for protozoa, do a 23&me kit, live off of hydrocortisone or just run down the road until my body explodes. The plan for today is to meditate, try and watch my daughter play soccer and just enjoy the last day of the weekend.

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Interesting article Angela. I've asked some of the male members on here if they have had their balance between their testerone and estrogen checked to make sure that they are not too high in estrogen. Since some of us women seem to be high estrogen. I wonder if this could play a part in the males here with POTS. Interesting that it is thought that this along with different types of bacteria and protozoa's are also at play here.

Issie

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This is totally off topic, but after reading and watching videos, which were very interesting, btw, thank you for the research,(I was negative for lymes and syphilis), I found that funny, that my neurologist tested me for syphilis, since my husband after all these years should have been symptomatic, also), I like Relax86's attitude, and Issies, too. I'm just trying to do the best I can with medication, diet, and supplements after way too many years going undiagnosed. I'm no longer tachycardic, unless I'm exercising, which is so much better, and my D3 is up from 25 to 45; I have several new diagnoses, equivocal for scleroderma, I guess it depends on the lab, although these were sent to Birmingham at UAB, so I suppose I'm between negative/positive, which I found rather funny since this same rheumatologist said the same thing to me 14 years previously. I'm atypical and unconventional in everything I used to do, anyway, including taking care of chronically ill children, scuba diving, skiing and I went mountain climbing once, which was enough...lol. My next stop will be the endocrinologist, but I'm not in a hurry, can you tell. :rolleyes:

I'm doing so much better than I was a year and a half ago in many ways. I can drive short distances, without running into curbs, and wrecking my car, which is good, I exercise on the elliptical at the YMCA regularly, and my vision still waxes and wanes. I expend my energy wisely; I actually went para sailing and took a sunset sail with zofran this past summer with my husband of 30 years. We all have our days....I enjoy watching the birds and the wildlife in my backyard; just saw a buck running wildly; I sing in the choir at church, help others with dysautonomia on a Face book site that's private, go to prayer for my grown sons, one married, and attend fibro meetings once a month to help others medically (retired RN), and I'm about to take a trip to see my sister and her two new twin grandbabies, my nieces' newborns. I still research on occasion, too, but my life has been full... :)

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Kim so happy that you are better and more functional. Sorry to hear about the possible scleroderma. I had an alternative doc tell me one time that I had that ---but, I have EDS and I don't think that the two go together - extreme opposites ---I'd think. Hopefully, they can do something for autoimmune and it will help to stop the progression. Keep us posted. Keep the good attitude and keep doing what you love.

Issie

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Ok so i need more testosterone. that was an interest article.

Balance makes men feel a lot better if things are corrected. I have a friend that found this to be the case with him and he used transdermal test. He said he felt tons better with getting his levels where they needed to be.

Issie

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