New Doctor - New Ideas - Could This Be The Answer, Or At Least A Part Of Our Puzzle?

[issie]

I tend to agree with Anna on this one. I think that men are so used to trying to be the "strong one" and show no weakness. I think men think showing illness to be a sign of weakness ---but, it isn't. Women or more likely to tell you how "awful" they feel and men tend to try to conceal it. But, I know some men are very tuned in to their bodies and real aware of what is going on with it. My husband can tell with one bite of food whether or not he should even swallow it or not. (I'm not that sensitive or able to tell that closely.) But, he pays attention to what his body is telling him and avoids a lot of problems because he does that. So, I'm thinking not everyone is as tuned in.

Plus, from what that article above on women and the immune system showed ---more women seemed to be afflicted by autoimmune issues.

Issie

[MomtoGiuliana]

I do agree that men tend to ignore health warning signs and may down play pain. I'm confused though as to how someone could ignore POTS/dysautonomia. Perhaps if it were mild this would be possible. But many of us are hit so very hard that we could not perform normally no matter how much we wanted to ignore it. And you can't stop yourself from fainting typically by ignoring it!?

[Angela]

In conjunction to Issie's post on biofilm by Amy Proal, I found the following articles from scientistlive interesting as autoimmune has been connected with low vitamin levels, especially vitamin D and all the recent suggestions coming up that pots is autoimmune disorder/disease

Medical

Vitamin D dangers

Deficiency in vitamin D has been widely regarded as contributing to autoimmune disease, but a review appearing in Autoimmunity Reviews explains that low levels of vitamin D in patients with autoimmune disease may be a result rather than a cause of disease and that supplementing with vitamin D may actually exacerbate autoimmune disease.

Authored by a team of researchers at the California-based non-profit Autoimmunity Research Foundation, the paper goes on to point out that molecular biologists have long known that the form of vitamin D derived from food and supplements, 25-hydroxyvitamin D (25-D), is a secosteroid rather than a vitamin. Like corticosteroid medications, vitamin D may provide short-term relief by lowering inflammation but may exacerbate disease symptoms over the long-term.

The insights are based on molecular research showing that 25-D inactivates rather than activates its native receptor - the Vitamin D nuclear receptor or VDR. Once associated solely with calcium metabolism, the VDR is now known to transcribe at least 913 genes and largely control the innate immune response by expressing the bulk of the body's antimicrobial peptides, natural antimicrobials that target bacteria.

Written under the guidance of professor Trevor Marshall of Murdoch University, Western Australia, the paper contends that 25-D's actions must be considered in light of recent research on the Human Microbiome. Such research shows that bacteria are far more pervasive than previously thought - 90% of cells in the body are estimated to be non-human - increasing the likelihood that autoimmune diseases are caused by persistent pathogens, many of which have yet to be named or have their DNA characterised.

Marshall and team explain that by deactivating the VDR and subsequently the immune response, 25-D lowers the inflammation caused by many of these bacteria but allows them to spread more easily in the long-run. They outline how long-term harm caused by high levels of 25-D has been missed because the bacteria implicated in autoimmune disease grow very slowly. For example, a higher incidence in brain lesions, allergies, and atopy in response to vitamin D supplementation have been noted only after decades of supplementation with the secosteroid.

Furthermore, low levels of 25-D are frequently noted in patients with autoimmune disease, leading to a current consensus that a deficiency of the secosteroid may contribute to the autoimmune disease process. However, Marshall and team explain that these low levels of 25-D are a result, rather than a cause, of the disease process. Indeed, Marshall's research shows that in autoimmune disease, 25-D levels are naturally down-regulated in response to VDR dysregulation by chronic pathogens. Under such circumstances, supplementation with extra vitamin D is not only counterproductive but harmful, as it slows the ability of the immune system to deal with such bacteria.

The team points out the importance of examining alternate models of vitamin D metabolism. "Vitamin D is currently being recommended at historically unprecedented doses," states Amy Proal, one of the paper's co-authors. "Yet at the same time, the rate of nearly every autoimmune disease continues to escalate."

Biotechnology

Creating autoantibodies

Autoimmune diseases have long been regarded as illnesses in which the immune system creates autoantibodies to attack the body itself. But, researchers at the California non-profit Autoimmunity Research Foundation (ARF) explain that the antibodies observed in autoimmune disease actually result from alteration of human genes and gene products by hidden bacteria.

Not long ago, scientists believed they had located all bacteria capable of causing human disease, But DNA discoveries in the last decade have led the NIH Human Microbiome Project to now estimate that as many as 90% of cells in the body are bacterial in origin. Many of these bacteria, which have yet to be named and characterised, have been implicated in the progression of autoimmune disease.

In a paper published in Autoimmunity Reviews, the ARF team, under the guidance of Professor Trevor Marshall of Murdoch University, Western Australia, has explained how Homo sapiens must now be viewed as a superorganism in which a plethora of bacterial genomes - a metagenome - work in concert with our own. Marshall and team contend that the human genome can no longer be studied in isolation.

"When analyzing a genetic pathway, we must study how bacterial and human genes interact, in order to fully understand any process related to the human superorganism," states Marshall. "Especially since some of these pathways contribute to the pathogenesis of autoimmune disease."

For example, the team notes that the single gene ACE has an impact on myocardial infarction, renal tubular dysgenesis, Alzheimer's, the progression of SARS, diabetes mellitus, and sarcoidosis, yet recently ACE has been shown to be affected by the common species Lactobacillus and Bifidobacteria. Found in yogurt, these species are often considered to be innocuous or "friendly."

"No one would argue that these species aren't present in the human body, yet there has been inadequate study of how these 'friendly' species affect disease," states Amy Proal, the paper's lead author.

"What we thought were autoantibodies generated against the body itself can now be understood as antibodies directed against the hidden bacteria," states Marshall. "In autoimmune disease, the immune system is not attacking itself. It is protecting the body from pathogens."

[issie]

Hummmm, interesting paper - Angela.

I know Dr. Fry does check our Vit D levels and he told me he wanted me to stay around 50. But, I have to take a lot of Vit D. to stay where he wants me. So, I guess it might be necessary to take the Vit D --but, make sure where your levels are.

Issie

[anna]

I'm confused though as to how someone could ignore POTS/dysautonomia. Perhaps if it were mild this would be possible. But many of us are hit so very hard that we could not perform normally no matter how much we wanted to ignore it. And you can't stop yourself from fainting typically by ignoring it!?

Lol I know what you mean MG, I do think our family are a bit odd to be honest, we are not full fainters, we do all have bouts of being bed bound but are not continually grounded. I guess an example of what my families men folk are like would be; some months ago my brother finally after months of not wanting to bother the Dr. actually got an appointment. He went to his GP whom sent him straight to hospital after a work up by the cardio team my brother gets to see the Professor of cardiology at one of the UK's top heart hospitals. The prof. exclaims to my brother that my brother must be the most stoic person he has ever seen as he has never seen some one still standing let alone walking around and still working with the amount of heart failure and Afib he was having.

I also witnessed this stoic nature with my daughter when she had her TTT our POTS specialist was particular shocked that my daughter was still conscious when her BP dropped to 22/7 on a number of occasions, he even did a quick check of the machinery as he could not quite believe it lol.

So I guess we may be a bit odd as a family then lol.

Angela this article is rather interesting thank you.

[issie]

I was clued in to another doctor by another person who contacted me last night who has found out they have Lyme and a co-infection. This doctor treats it with herbals. His name is Dr. Stephen Buhner. He says the first part of treatment for protozoa should be to support collagen. As the protozoa attack and weaken collagen. I keep reading this in different places. I'm still wondering if there is some sort of connection with our HEDS - that can not be tested with genetics. Anyone, else reading about these sort of things?

Here is a write up of a conference where this doc spoke and what he said to do about it.

http://www.publichealthalert.org/Articles/scottforsgren/Buhner.htm

Issie

[MomtoGiuliana]

I also witnessed this stoic nature with my daughter when she had her TTT our POTS specialist was particular shocked that my daughter was still conscious when her BP dropped to 22/7 on a number of occasions, he even did a quick check of the machinery as he could not quite believe it lol.

So I guess we may be a bit odd as a family then lol.

Wow Anna. It is interesting how different bodies/people have different tolerances.

[Angela]

Principal Investigator: Philip Stewart

Affiliation: Montana State University

Country: USA

Abstract: This project will address the hypothesis that poor healing of many chronic wounds is due to the formation of infectious microbial biofilms. Biofilms are known to form preferentially on dead or damaged tissue and contribute to peristence because microorganisms in biofilms evade killling by antibiotics and by the host defenses. A corollary of the hypothesis is that therapies that effectively target microbial biofilms will improve healing of these wounds. The goal of this project is to develop knowledge and techniques needed to evaluate the potential utility of anti-biofilm therapies in the context of wound healing. This will be accomplished by characterizing the presence, speciation, structure, arid oxygen availability in wound biofilms (Aim #1), developing a suite of in vitro and in vivo models of chronic wound biofilm infection that simulate diverse aspects of biofilms in wounds (Aim #2), and applying these models to evaluate the efficacy and safety of several potential anti-biofilm technologies (Aim #3). The models include polymicrobial biofilms grown in laboratory systems, a keratinocyte scratch model interfaced with bacterial biofilm, a rafted organ culture model, and mouse models of chronic wound infection. Success in this project depends on merging expertise from biofilm science and technology with expertise in wound healing and therefore requires a multidisciplinary team of biofilm microbiologists and engineers, dermatologists, cell biologists, and clinical collaborators. The project is innovative and high-risk in three important respects. This project involves investing in the biofilm concept by bringing in investigators who are outside the wound healing community. The marriage of microbial biofilm to tissue culture and animal wound models is innovative. And finally, some of the proposed anti-biofilm strategies are clearly high-risk. Wounds that fail to heal, such as diabetic foot ulcers, venous leg ulcers, and pressure ulcers are a major source of morbidity, mortality, and health care expenditure. Therapies that target biofilms may provide a significant improvement in the treatment of chronic wounds. Futhermore, the results of this research may impact the treatment of other biofilm-related diseases, such as osteomyelitis, endocarditis, prostatitis, otitis media, and sinusitis.

Funding Period: 2006-09-01 - 2010-08-31

more information: NIH RePORT

Issie, didn't your foot take a long time to heal? Or maybe I misread.

[issie]

Yes, I still have a whole lot of issues with it too, but not open sores - mostly pain. It also feels like the tissues are rubbing over the plates and it stays irratated. Thinking that's related to having EDS though. I did get cellulitis right after the surgery and they thought it might be MRSA - but, it wasn't. THANK GOODNESS!!!

Issie

[DoozlyGirl]

Hummmm, interesting paper - Angela.

I know Dr. Fry does check our Vit D levels and he told me he wanted me to stay around 50. But, I have to take a lot of Vit D. to stay where he wants me. So, I guess it might be necessary to take the Vit D --but, make sure where your levels are.

Issie

Issie,

Your VDR SNP likely has something to do with your need to take alot of Vit D to keep your level up.

Lyn

[issie]

Lyn, I've thought of that. I don't think 23&me tested for that. I'll have to dig my papers out and see. I'm thinking there may be something to it --as everyone in my family is low in Vit D. I really think, getting the methylation stuff figured out is going to give me more answers.

Are you getting yours sorted?

Issie

[issie]

Hey Lyn ---yup ---mutation on VDR gene. That's probably why the need for high Vit D. It took me forever to get it up to 50 and Life Extension says it should be higher, that is the lowest end of the scale. I have to keep my levels up there - as I have issues with osteopenia and Vit D - helps with that.

Issie

[GypsySoulNicole]

Issie, I only have a minute, but wanted to post this. I wondered if somehow the protozoa could trigger the genetic mutations and the connections to EDS since spirochetes prefer tissue in the spirochetes form (blood for the cell wall deficient lyme form and I'm not sure what the cyst form prefers) . Anyway, when I first got really ill, I had a positive ANA like so many others on here. I asked the doctor about it, if it was a seperate issue than the lyme. He said lyme can trigger autoimmune. Anyway, I found these interesting articles about T1 pathogens triggering autoimmune, affecting thyroid etc. and the role of the VDR gene. I'll link below. I also wanted to mention as far as the lyme testing and how I had live blood analysis with darkfield microscope. This analysis is controversial as not approved by Fda as a means for diagnosis. However, I found it interesting that it is approved and is the best way to diagnose the syphilis spirochetes which is distantly related to borrelia. I don't question my diagnosis as I saw the darn things twisting holes in my cells, which was the cell wall form. When we saw my sister spirochetes they were not in her cells, a few were floating around outside of the cells but the majority were in her tissues, presumably from her symptoms.

As for an update on my progress, I am fighting lyme before I work on coinfections. I am taking Samento (Tao free cats claw) along with grapefruit seed extract, which is shown to kill cyst form. I have also made major detoxifying life changes, like homemade deodorant, soaps, cleaners and even makeup. I am eating grain free but unlike Issie am doing fats, like grassfed raw butter, lots of bone broth and organic foods. I am soaking in Epsom salts and spraying magnesium on my feet. Coconut Oil has helped a ton with energy, I am throwing it in hot tea, smoothies. and smothering it on my skin. I have had some strange herding and as my immune system is wiped out I even got shingles a few weeks ago. The upsides are outweighing the downsides, I feel like the fog is lifting, my bp is still low, but the tachycardia is improving greatly.

Here are the links I spoke about above

http://bacteriality.com/about-the-mp/

On this 2nd link, scroll down to the part that starts Caused By Multiple Microbes http://mpkb.org/home/diseases/lyme

[issie]

Interesting info, Nicole.

I have a mutation on my VDR gene and have a hard time getting my Vit D levels up. That article said that it should not be up high with Lyme. I don't have Lyme but a different protozoa. The one I have is in the family with malaria and acts very similiar to it. I don't know if that makes a difference or not. But, the co-infection I have goes along with Lyme. He did not check me for all the co-infections, just a few of them. I want to ask him about the Vit D article ---this is interesting to me. I know that each doctor will have their own ideas and ways of treating this. There is a lot of information out there with many different ways of doing it.

Dr. Fry, who discovered this protozoa and is still doing research on it --says that fat is one of the main things that it hides behind. He says that magnesium and fat cause the bio-films to be stronger and puts a stronger film around the protozoa and helps it to avoid the immune system. I know there are many types of organisims so not sure if this is a different type of thing and has to be treated differently. Is there a reason for you to be on a higher fat diet?

I appreciate your sharing what you are doing. Because, a combination of things may be beneficial. My doc had me do some herbals to start and then added in an enzyme to break down the bio-film and now low dose antibiotic. I'm pulsing the dosage of the antibiotics (like most of the lyme articles speak of). I'm not sure whether or not I need to pulse the herbal ---but had to with a sickness I had recently and it seemed to actually help more that way. I just started the antibiotic this week ---so we will see how it goes. I'm not one to take antibiotics and would rather not ----but, the co-infection that I have is what we are trying to target with this antibiotic and once it is taken out ---I probably will not have to do the antibiotics. Just the diet and on and off enzymes and herbals. At least that is what we are hoping for. How has the cat's claw helped you? What can you tell about it?

I'm of course still doing my turmeric and occasional ginger and that is something used to help with these things. And it helps my pain and with herxing. (Some people it helps their POTS and MCAS. FYI)

I have read that these organisms can break down the collagen in our body and create holes in it. That would make sense that it could play a role in HEDS. Since no one yet has come up with a rhyme or reason for this problem ----I guess this is as good as any ideas that are out there. I have questioned that myself and wonder if there is a connection. And since these organisms can be passed even to an embryo and between people - that would explain how families could have it. But, and this is a big BUT this is all speculation on my part. I haven't read anything to connect HEDS and Lyme as far as research or articles. It's just something that I wonder about.

Thanks for posting and keep us updated when you get new info that may help others.

For sure let us know how it goes with your sis and her thyroid. As I'm dealing with some very similiar issues myself right now ---I'm especially interested. I wonder if I should put off my thyroid biopsy for a few more months. I keep thinking that these nodules may get smaller and there is some sort of connection to this infection and as it gets better maybe the thyroid and it's nodules may also. But, there is thyroid cancer in my family ---so that sort of scares me. And with them enlarging and more of them ---not a good sign. I guess I'll have to make a decision pretty quick on this one ---as it's supposed to be the first day of March.

Issie

[GypsySoulNicole]

Issie - Your mutation on the VDR may be some insight toward not just your low d levels, but calcium absorption, parathyroid function and your renal involvement linking in with the stuff we discussed in the convulsions thread. I was researching a link I stumbled on at the Weston A. Price site, which brought me to this pdf, http://mpkb.org/home/publications/albert_autoimmunity_reviews_2009 that is supposed to explain why a dysfunctional Vitamin D metabolism is at the heart of the body's inability to purge the microbiota which are causing Lyme's/co -infections, as well as most other chronic inflammatory disease. It will also explain why a low Vitamin D

test is indicative of a dysfunctional metabolism which is not helped by D supplementation.

Then somehow I got to this http://www.endotext.org/parathyroid/parathyroid3/parathyroidframe3.htm explaining the parathyroid, renal involvement.

[GypsySoulNicole]

I forgot, I wanted to ask if you had revisited a post about Phillips Offit Wakefield Syndrome now that you know you have FL1953? I believe it was posted back in Sept. anyway, I read it today and it has many curious. I have 3 little girls and 2 developed. worsening health issues after they received the h1 n1 vaccine a few years ago. The link includes pictures of the biofilms under microscope.

Synopsis: Trauma to the immune system, including vaccination, can initiate a systemic inflammatory condition that may fail to self-limit, and become more aggressive in individuals with a Glutathione S-Transferase (GST) deficiency and/or an impaired Cytochrome P450 pathway (CYP) (Phillips et al, 2010). Acute inflammation may reactivate dormant pathogens, such as EBV, CMV, HHV6, XMRV, picornaviruses, etc., and cause a cascade of debilitating disorders, especially when vector borne pathogens, such as FL1953 (Protomyxoa Rheumatica), are present. People who suffer multiple or repetitive insect bites, or a single bite from a tick, are at greater risk. Protomyxoa Rheumatica (destroys heme cells), Bartonella (seizures), and Babesia (parasite that loves iron, leaves oxidized iron deposits in joints, and causes "air hunger"), may enhance the activity of other infections. Because of increased airway and lung mucus, patients living in arid climates, or in coastal salt-water areas, may experience lighter symptoms, compared to those living in inland areas with higher humidity. In many individuals, oxygen levels may appear normal, but will decrease to below 85% with light to moderate exercise in severe cases. Decreased exhaled NO levels may be used to monitor an underlying pulmonary inflammatory condition. During the second phase, inflammation may decrease, and CBC tests may appear somewhat lab-normal. New food allergies may result when proteins from favorite foods contact antibody producing immune cells in an inflamed gut lining, resulting in newly sensitized mast cells releasing increased amounts of histamine when those foods are later eaten. This causes new and additional inflammation, which further elevates cortisol that destroys short term memory neurons in the hippocampus of the brain, and inhibits the pineal gland from producing the melatonin that is necessary for sleep. Malabsorption, caused by the inflamed gut, results in Mitochondrial insufficiency, causing an additional cascade of debilitating events. The multiple reactivated pathogens may present with multiple complex symptoms, called "viral interference," making it difficult to diagnose any single disorder. The patient may go undiagnosed for years, and may present with symptoms of CFS, forgetfulness, ADD, ADHD, irritability, headache, nausea, joint pain, photophobia, Mastocytosis, adrenal insufficiency, Gastroenteritis, Colitis, Connective Tissue Disorders, flares of Lupus-like symptoms, and sometimes idiopathic seizures. These individuals may have an intolerance to foods with a high fat content, foods that contain wheat, and foods that contain citric acid. In severe cases, decreasing barometric pressure, caused by approaching storm fronts, will result in a flare of symptoms.

The patient continues to plateau or decline until 1) cortisol and histamine producing foods and airborne irritants are removed, 2) pathogens are identified and brought under control, 3) body burden is mitigated, 4) nutrient absorption is restored, and 5) cycles (ie: methylation) are normalized or compensated for.

The rest can be found at http://autismapocalypse.com/#Simplified

[Angela]

well, i have tested + for protozoa and negative for lymes, which i understand could b a throw with blood labs. my only vitamin definciency seems 2 be magnesium. ask amish what his thoughts r on that? thx... miss indiana

[Angela]

how weird, that is one of the first articles i read before getting tested. always been against vaccinations too, i find it interesting where they show the chart of countries and how many vaccines they must take per life. Bartonella (seizures) I hope I do not have but am still curious about, since my eeg's are weird. well, i know everyone views Indiana as the "armpit" of America but i would say it is much more beautiful than out here in the cracked earth.

[GypsySoulNicole]

I found it interesting about reactivating protozoas, biofilms, etc. in those with immune issues after not just vaccinations, but trauma, surgery and so on. I'ge had POTS symptoms for 27 years now, (ever since I took a hit from an old buick followed by that station wagon!) So, I would say trauma has a hand in my dysautonomia, however, I've always had a weak immune system, ( I've not had genetic testing yet, but doing 23andme soon. My daughter has issues with the Mthfr gene though so I'm guessing I do as well) . I fell extremely ill in Nov. 2011 after a series of steroids injections in my SI joints, hip and lumbar vertebrae. I wonder if that stress on my body lead to the reactivation of the nasty protozoa I'm fighting now. Like Issie, I'm trying to figure out EDS in all of this as well, which came first the chicken or the egg?

Angela, Let everyone keep thinking Indiana is the armpit of America! Keeps population down so we can maintain the rural lifestyle! Lol! My brain. is fried for the night!

[ramakentesh]

WHy the steroids in the SI joints? A Hallmark symptom of Ankylosing Spondylitis which I have and so do others strangely associated with their POTS.

[GypsySoulNicole]

Rama - I have suspected ankylosing spondylitis. I have so many factors for damage though. I was hit by 2 cars when I was 6, causing a compound fracture to my right femur among many other things. I blew off so many pots symptoms and pain thinking it was just the result of hitting 30 and being hit by a car. In 2011 I had xrays /mri done because I had severe hip pain, sometimes keeping me from even standing on it without collapsing. I had a small scoliosis because I am naturally fused at s1 l5 (not evenly on both sides) I suspected anky then but the Ortho said I was probably born that way. I have x rays from 2002 and the fusion was not as progressed. I have a spondylethesis which is retro (sliding back) at L3 L4. I also found out that I had previously broken my pelvis. That occurred from fainting at a Walmart checkout while I was pregnant with our last daughter. ER assumed I broke my tail bone and said it would heal on it's own, no xrays because I was pregnant. After being referred to pain management I had an injection in my right hip, that didn't help so they did SI joints (the Ortho did say my SI joints looked terrible.) the SI injections didn't take the pain away so as a last resort they did injections at L3, 4,5. The last injections worked wonders on the hip pain but soon after that is when the Raynauds developed and my POTS made be bedridden.

[ramakentesh]

You know I was the only patient around with Ank Spond and POTS when I first got them. But since then I have spoken to SOOOO many people that have both or have tested positive for HLA-B27 which is the Ank Spond gene.

Ive been advocating and trying to get doctors to follow this up for years but while they often take it on board that is as far as it goes.

I think I now have 7 patients (4 on this forum) with diagnosed Ank Spond, another two that have it in their families and another two that have a positive HLA-B27 gene result. Im not a huge believer in coincidences.

[ramakentesh]

My SI joints are pretty fried - the one on the right has had a few steroid injections. It hits me basically in that right sacroiliac joint or my shoulder - its considered a very mild case but that is because my body tends to go through POTS flares that last longer and then Ank Spond when POTS is settled down.

[issie]

Thanks for all the info Nicole. I will have to re-read it and think a little more about what this may mean. Interesting that there are connections with liver and kidney and I'm having problems with both. My liver has problems with P450 pathway detoxing and I'm now in 2nd stage Chronic Kidney Disease. (I was in stage 3 and it got better with the diet.) I found a few things in that article that may explain some things with me. VDR issues connected to hair loss - problems with collagen - allergies - protozoa etc.

I too associate vaccines to my illness - when I was around 8 years old and a polio vaccine. Both my sis, a friend and me --all got sick at the same time and none of us really got that much better.

I have spurs, degeneration and all sorts of problems with my back and neck. They have said that there is severe spondylitis. I have other autoimmune problems too (vitiligo and alopecia. And one time was positive on dsDNA which indicates Lupus (last check was okay).

I also have in the past had issues with osteopenia. It has gotten better with the higher Vit D intake. I have really low levels of Vit D - without supplementation. I also had higher levels of albumin. I need to look more into this VDR mutation and what this may mean. Whenever I would try to supplement with calcium - it makes me sick. I used to use magnesium - but, this is one thing that Dr. Fry says not to use because of the bio-films and the protozoa. So, not using that. I think there has to be a connection here with all this. I just haven't figured it out yet.

These mutations on the methylation pathways, I think, are going to explain a whole lot of things. But, figuring out how to by-pass the mutations and get the body to start absorbing things correctly and getting them to transform into the proper substances for the health of the body and not the destruction of it ---that will take some time.

I'm certain that these protozoa and co-infections are playing a part in those of us that have the problems. But, maybe, we are going to have to do more then just try to destroy them. Dr. Fry said that we can NEVER totally get rid of them. Once we have them in our body - it's a matter of controling them. So, if some of these other things that are dysfunctional is adding to the burden ---then maybe looking into what we need to do with these other issues ---may make the difference.

Rama, there are genes that can tell if one is pre-disposed to AS. I have the genes. I keep trying to get you to do the 23&me test. Then you will have a whole lot more info on what your body is doing and what you could possibly pass on. If we can figure out where the problems may be and if there is a way to tweak the mutations (if they occur or happen to turn on) then we might not only help ourselves but any off spring we may have too.

I know Angela is getting her testing done soon. It will be fun to compare notes with those that have these protozoa's and see what mutations we may have in common. Looking at things at this level is very challenging - but, I think we are going to sort more things out this way.

Nicole, have you done 23&me yet? There are several of us trying to research our results and figure it out. It's really complex and you have to download your raw data into a couple of other (free) sites and that helps you to sort things out even more. One is called Genetic Genie and the other Prometheses. I got a good bit of info that way from my raw 23&me test data. Then there are a lot of websites that help you to sort some of the info and what to do about them. They sometimes run specials on the test for $99. That stores your data for a year and they update it with new testing periodically. I'm a lifer and they continue to test my DNA as they add test. I got in under a study connected to mast cell issues.

Speaking of mast cell. What I'm treating pretty agressively is mast cells in the intestines - with GastroCrom. Interesting some of the articles that were posted and the problems occuring in the intestines. It will help with autoimmune issues - as a good bit of autoimmune problems can start in the intestines.

You guys keep up the brain storming. We hopefully, can come up with some solutions or at least sort out the science connected to it.

Thanks for all of your contributions --you guys!!!! It's so complex - yet starting to go together like a puzzle. It will be interesting to see what the finished puzzle will be!

Issie

[ramakentesh]

Isnt there like 40,000 different methylation pathways in the human body?

Gastrocrom is interesting - it also suppresses the release of inflammatory molecules like cytokines