GypsySoulNicole

Interesting, Pseudoephedrine messes me up, so does ephedrine, but Adderall is my life saver. Last spring I had a sudden scotoma. I was outside watering flowers when it came on, and it scared the heck out of me. Of course, freaking out sent my potsie heart flying and I ended up in the ER. Not much happened at the ER cause wouldn't you know I had a dystonic allergic reaction to the Reglan they gave me (for migraine). If you've never had a dystonic allergic reaction, it's a peach! I've had 3 now, all in a hospital to different meds and the best way to describe it is an immediate need to get the heck out of your body! It's horrific! Anyway, I followed up with 2 opthamologists and after MRI's, tests showing visual field loss etc., one of the docs suggested B12 deficiency as a possibility. I started supplements and my vision returned. I noticed a few days before the scotoma, my vision would slowly fade out, be almost gone for a few minutes then return blurred. I just wrote it off as normal pots stuff.

I know my above post was super long, but I wanted to add, I'm not convinced that Lymes is my total answer. I know I have it, I believe it could be the evil behind most of my symptoms. But, I also think that there were other factors building up to my "perfect storm " pots crash. Like a mthfr mutation, methylation issues, etc. The 6 months before my crash I had 6 steroid injections in my joints. Steroids injections lowered my immunity, allowing what I believe to be a full on "party house " in my body for lymes and every other parasite nasty thing to take over.

I've been on some chronic lyme forums researching and have been wrapping my brain around this study published on March 22nd. "Scientists have confirmed that the pathogen that causes Lyme Disease -- unlike any other known organism -- can exist without iron, a metal that all other life needs to make proteins and enzymes. Instead of iron, the bacteria substitute manganese to make an essential enzyme, thus eluding immune system defenses that protect the body by starving pathogens of iron." ( from http://www.sciencedaily.com/releases/2013/03/130321205712.htm) The actual study can be found at http://m.jbc.org/content/288/12/8468.abstract Now, my first question was, Would this make lyme patients manganese deficient because the spirochetes are using it, or would we have manganese toxicity because they are hanging on to so much manganese and spreading around? Then I read this from Dr. Amy Yasko, " Chronic lyme infection may lead to imbalances in manganese levels in the body, potential causing manganese deficiencies in the body. Supporting manganese which is a mineral that is needed for nerve function represents a bit of a catch 22. It is important to keep manganese in normal range for optimal nerve function, yet at the same time you do not want to supply high levels of a necessary mineral for Borrelia burgdorferi growth. Conversely the possibility exists that Borrelia burgdorferi could cause localized increases in the concentration of manganese in the body; high doses of manganese are toxic, creating Parkinsonian like symptoms." Could this be a missing piece for us? I would have never thought I could have Lymes, evidentally neither did any of the specialists that have gone over everything else. It wasn't until I saw my own spirochetes twirling around my cells under darkfield microscopy that I believed Lyme could be my pots cause. What I'm saying is, Don't rule it out. Even with a negative test, you can still have Lymes. As of July 1, physicians in Virginia will be required to give patients information on the limitations of Lyme testing. Hopefully, this will be nationwide soon. Read through some of the functions Manganese is responsible for and think about how a Manganese imbalance whether high or low would effect the processes. Mitochondria Manganese superoxide dismutase (MnSOD) is the principal antioxidant enzyme in the mitochondria. Because mitochondria consume over 90% of the oxygen used by cells, they are especially vulnerable to oxidative stress. The superoxide radical is one of the reactive oxygen species produced in mitochondria during ATP synthesis. MnSOD catalyzes the conversion of superoxide radicals to hydrogen peroxide, which can be reduced to water by other antioxidant enzymes. Metabolism, Gluta mate mine and Yo GABA GABA (cartoon reference) A number of manganese-activated enzymes play important roles in the metabolism of carbohydrates, amino acids, and cholesterol. Pyruvate carboxylase, a manganese-containing enzyme, and phosphoenolpyruvate carboxykinase (PEPCK), a manganese-activated enzyme, are critical in gluconeogenesis the production of glucose from non-carbohydrate precursors. Arginase, another manganese-containing enzyme, is required by the liver for the urea cycle, a process that detoxifies ammonia generated during amino acid metabolism. In the brain, the manganese-activated enzyme, glutamine synthetase, converts the amino acid glutamate to glutamine. Glutamate is an excitotoxic neurotransmitter and a precursor to an inhibitory neurotransmitter, gamma-aminobutyric acid (GABA). Bone development - Wound healing possible EDS, connective tissue, ankylosing spondylitis connection? Manganese deficiency results in abnormal skeletal development in a number of animal species. Manganese is the preferred cofactor of enzymes called glycosyltransferases; these enzymes are required for the synthesis of proteoglycans that are needed for the formation of healthy cartilage and bone. Wound healing is a complex process that requires increased production of collagen. Manganese is required for the activation of prolidase, an enzyme that functions to provide the amino acid, proline, for collagen formation in human skin cells. A genetic disorder known as prolidase deficiency results in abnormal wound healing among other problems, and is characterized by abnormal manganese metabolism. Glycosaminoglycan synthesis, which requires manganese-activated glycosyltransferases, may also play an important role in wound healing. And for the possibility of why females would be affected more... females use more manganese. Nutrient interactions Although the specific mechanisms for manganese absorption and transport have not been determined, some evidence suggests that iron and manganese can share common absorption and transport pathways. Absorption of manganese from a meal decreases as the meal's iron content increases. Iron supplementation (60 mg/day for four months) was associated with decreased blood manganese levels and decreased MnSOD activity in white blood cells, indicating a reduction in manganese nutritional status. Additionally, an individual's iron status can affect manganese bioavailability. Intestinal absorption of manganese is increased during iron deficiency, and increased iron stores (ferritin levels) are associated with decreased manganese absorption. Men generally absorb less manganese than women; this may be related to the fact that men usually have higher iron stores than women. Further, iron deficiency has been shown to increase the risk of manganese accumulation in the brain. manganese functions http://lpi.oregonstate.edu/infocenter/minerals/manganese/ Reminder, I am just a beauty school drop out trying to heal myself. I can't wait to hear thoughts on this (hint, hint, Issie, Rama, Dana, Ang)

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/

Check out this youtube video on lyme, inflammation and autoimmune. http://m.youtube.com/#/watch?feature=relmfu&v=c0cci8ceu_

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.

Interesting topic! I too have always had issues with walking into things, my daughter does as well. I no longer drive at night because I will stop at stop signs way before I should have. I get car sick as well. I've only been on a boat a couple of times and it was a nightmare! My mother and aunt both have vertigo issues and were dx with menieres. I had a tube put in my ear about 7 years ago, I passed out during the process and after waking up had severe vertigo for about 3 weeks. My oldest daughter has had 4 ear surgeries, even having her ear drum removed and inner ear surgery for a removal of cholesteatoma. When they got in the inner ear, she had no cholesteatoma, just scar tissue and inflammation! My mother (who is 73, but crazy active) had a bout with vertigo last week. I took her with me Wednesday to my new Amish doctor. He asked her about vertigo and which side it originated on. Usually, she will get it when she wakes up in the AM and turns her head. Her ENT has done this manuever in the past where they manipulate her to put "crystals back in place " that they say are floating in the inner ear. Like every visit thus far, the Amish doctor had a resolution. He explained new research that vertigo and inner ear issues were a symptom of teeth and jaw issues. He asked if she had tmj, (she doesn't that she knows of) but then she remembered she has had a tooth on the right side that has been cracked for a few years. She had dental work done (veneers) and put fixing this tooth off as it wasn't bugging her too much and she didn't want the expense. His office now offers thermal imaging to show areas of high inflammation. I was surprised to see the photos of those with mouth /jaw issues and the highest contrast of inflammation (where it lights up white, followed by red for 2nd most inflamed) were not by the tooth or jaw but toward the inner ear. Mom called her dentist when she got home and made an appointment to have her tooth removed next week. I am interested to see if it helps her vertigo issues. Just something to think about, oral health is so important. With knowledge between oral health and heart health in the medical community I am baffled why medical and dental insurance are seperated. Dental health should not be a luxury like it is only cosmetic, that's a whole new post though isn't it! lol!

Issie - To answer your question as to why I am not following the MCDougall diet Dr. Fry recommended, I feel there are too many other things going on in me to eat such a restrictive diet. While I do need to destroy biofilms and starve parasites, I have to be delicate with my gut, kidneys, liver and everything else since nothing is functioning properly. Grass fed butter has SO many healing properties. One protein in grass fed milk / butter is lactoferin. Lactoferrin has a strong affinity to iron and binds to it so it can get delivered to the cells instead of being robbed by pathogens to further build their biofilm. Magnesium is vital to so many processes, that even though the biofilm uses it to get stronger, I can't deprive my body of it. Magnesium could help remove calcium from the biofilms as well. Bone broths help heal the gut and the natural gelatin helps with connective tissue. I'm chelating the heavy metals that are breaking up by oil pulling and brushing with food grade activated charcoal. The aluminum in deodorant lead me to making homemade deodorant and my migraines decreased in frequency just a few days after I made the switch.

I don't think it's a coincidence on multiple people having gut issues like that before our crash. Angela, I picked up c diff in the hospital (which is common) after having a large amount of antibiotics during an emergency c section. Like Issie, I was bad, I had kidney failure and the worst gut pain ever. Wouldn't wish it on anyone. Ang - C diff takes over when the good gut flora is wiped out.

Is klebsebia something you had issues with? I was hospitalized with acute cdiff after an emergency csection in 06. I remember someone else with cdiff trouble as well on here. I am thinking I am like lemony snickets and suffered a series of unfortunate events, leading to my health situation. A combination of genetics, diet and trauma made my gut the ultimate playground for all things bad! Back to your original post, Bizarre foods with Rama... I'll add somethings I've experimented with thus far. Eating cucumbers, onions, dill and apple cider vinegar with Himalayan salt (good source of iodine) on it has been my new nightly thing for about a month and a half. I crave it and it seems to be helping with sleep (not tonight though!). Organic Grassfed Butter and or Ghee - doesn't make me feel different but dang its good. Bone Broth - big energy booster, brain fog clearing effects. I have a perpetual crockpot going with organic grassfed chicken bones. The natural gelatin helps everything! Remember how chicken noodle soup used to be the cure for a cold? Well, the artificial chicken flavored broth soup isn't curing anything. The good stuffs in those bones once they've became almost mush from cooking so long.

I'm on the total opposite spectrum. I am cold all the time! I want to move South! I have never sweat, I just turn red and hot to touch, but freezing inside. My best days were the 106 degree days we had last summer. I have an electric mattress pad that I use all year long, daily! I call it being on my charging station! I wonder what makes some extreme hot and some extreme cold, well, that is if there are more like me out there.

My POTS is worse when my stomach is. Does that make since? It seems that my Gastroparesis gets worse, and the slower my guts get, the worse by POTS gets.

Amen! Has there been a poll on how many had issues with gut bacteria before Pots onset? Not like "tummy ache " but things like Cdiff, Ecoli etc.

Awesome, I just so happened to be snacking on a salad with broccoli sprouts while I read that study!

Rama, I am so excited you posted this! On the New Dr. New Ideas thread, Issie had asked me why I was eating high fat when we both are fighting protozoas. I thought I would start a diet thread and then I found this! I know I've shared before I am now seeing an Amish doctor after getting dropped by insurance. I've been adopting a natural lifestyle and I think it's a huge part in what relief I have achieved. One of the greatest threads from awhile back was the pots connection with gut /brain connection. You can't deny foods importance on gut health. I have focused mostly on diet because it is something I can finally control in this illness without tests, scripts etc. "The food we eat is not just about pleasure, caloric intake, energy and nutrition. Food is fundamentally a signal to our bodies about our environment, and this causes shifts in our biochemistry and that of our offspring."( taken from blog comment I loved) There is new research on diets role on gene expression. How exciting they are researching what my mom always said to me, "You are what you eat!" The book by Dr. Shanahan called, Deep Nutrition - Why Your Genes Need Traditional Foods explains how many modern foods are not only making us fat but are creating disease within our cells. She explains the connection of diet and gene health. One study I read was done by the Norwegian University of Science and Technology, but, this link is a much better read, http://www.jackkruse.com/brain-gut-5-paradigm-drifts-paradigm-shifts-epi-paleo/ I know diet is a touchy subject. I used to get ticked at people mentioning diet to me when I felt like I was circling the drain, until I was ready to hear it. Which for me took getting dropped by insurance and forced to take a look at natural options. Now, it is becoming my hobby. Researching the importance of the food our great grandmas made, like bone broth, liver and raw milk etc. We are just a few months into our families lifestyle change and we see a Huge difference.

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.

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!

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

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.

This is a very interesting post about thyroid, adrenals, etc. and lyme. She has great research and links once you hit the section that starts with "Strong link between my sons lyme diseasecand thyroid disease http://www.stopthethyroidmadness.com/lyme-disease/

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 - wouldn't you know it goes back to what we're discussing on your other post. We saw a few lyme spirochetes under the microscope, not as bad in her blood as they were in mine (which I now know a lot more about and will post on the other thread) . The lymes attacked her thyroid. She has had her tail bone removed due to spurs, surgery on her neck vertebrae due to spurs and fusion of the lumbar spine. She suspected thyroid years ago after she had weight gain etc. but all of of her thyroid tests came back normal. They just told her it was enlarged. She is starting a similiar med regime as me, Samento (Tao free cats claw) to kill spirochetes, grapefruit seed extract to destroy spirochetes cysts and he gave her a particular calcium combination that she would be able to absorb even with her thyroid mess. He explained she had to treat the lymes first, which was the underlying cause and then they would set about repairing damage. I will continue to post of her progress as far as her twitching and myoclonus.

This might be weird, but do any of you have thyroid issues by chance? My sister has myoclonus, her seizures or twitches sometimes look like she gets a strong shiver when your cold. Her legs twitch and convulse as well. Yesterday, I took her to the Amish doctor I've been seeing and he reviewed her med history, and did a blood analysis. Long story short, her thyroid wasn't working properly causing her parathyroid to over produce a hormone and not metabolize calcium correctly. Since the calcium wasn't being metabolized it was depositing causing bone spurs and giving her a calcium deficiency. If you look into severe calcium deficiency may cause twitching, spasms and convulsions. http://www.innerbody.com/image/endo04.html bottom paragraph at this link describes convulsions etc. BTW she has been to Mayo, Rush and many other hospitals across the country for this. While she was told she had an enlarged thyroid the docs assured her it had nothing to do with her symptoms. The Amish Dr.s take on it is that just as an enlarged heart is a sign of it overworking because something is wrong the same thing can happen to the thyroid and if it is enlarged that should be a signal that something is wrong. She is starting a treatment regime for what was attacking her thyroid and I am anxious to see if it stops her convulsions.

Thanks Katybug, I'll check Ilads out. I've been reading an article on New ideas about cause spread of lyme at http://www.samento.com.ec/sciencelib/4lyme/Townsendhowens.html the samento website has some interesting articles on the subject. The Amish office is in northern Indiana. I can pm you the info if this is closer for you.

This summer we put in a pool for the kids, while researching a bbb method of chemistry to maintain the pool without buying into pool chemicals I felt like I started understanding my body and what was happening with me so much better. Let me explain. The pool needed to be kept at a ph of around 7.4, if the pool got to acidic, It discipated the bleach so it didn't kill the bacteria in the water. After waking up to a green pool one day I had to start over. I couldn't just dump more stuff in the pool because my filter was disgusting. This is where I've decided to start my process of healing. No since in starting the diet (dumping new stuff in the pool) until I clean the filters. So, I am starting with a natural kidney cleanse followed by a liver detox, possibly a coffee enema as used in the Gerson therapy. I will then start a juicing alkaline cleanse, again, similar to Gerson's therapy. I have decided to go with a natural microbial defense called Samento. Why not long term antibiotics? 1. Insurance dropped me 2. An acute case of C-diff hospitalized me in 2006 and that is an outcome I never wish to see again and 3. There is no research on whether lymes borrelia is a "super bug" or not which could explain why a simple run on antibiotics does not seem to work. Family concerned about me going on a juice cleanse diet have baffled me. No one cared when I was on a diet soda chugging nutty bar eating diet. My diet as it stands now is taking in more toxins than it is eliminating between aspartame, msgs and who knows what else are creating a perfect acidic environment for all sorts of protozoas, bacteria to hang out in. Me seeing the spirochetes in my blood was a wake up call for me. The possibility of Lymes or coinfections didn't seem obvious to me. I was stuck on EDS, Mast Cell research. The spirochetes boring holes in cells while I watched made me realize they are nasty. I believe it is them (now referred to as bugs) that are boring holes in connective tissue making my joints hurt, I believe the bugs are literally on my nerves causing the neuropathy. I believe they along with their parasetic buddies are wreaking havoc in my guts, messing with the vagus nerve making my heart go all over the place. I believe they have infested my lymph nodes stopping my bodies ability to recognize them as an enemy and turning on my positive ana. This has been the first thing that has connected all the dots for me. I don't how it works, but I am finally at a point where I'm willing to give it a try. My next thought on an organic vegan diet was the expense. I then remembered the phone call to Mayo where they wanted around $5,000 up front for a visit since I was a self pay. I was willing to pay if it meant me getting better. I then decided I would spend that on a masticating juicer and organic produce for a year. I have been reading http://lymemd.blogspot.com/ and other chronic lyme info and can't believe I blew the possibility off because I thought, surely my doctors would have thought of that. I also found this article on Ccsvi and the xmrv virus interesting http://www.seranogroup.org/index.php/site/entry/good_medical_news._now_what/ I think seeing the live blood analysis pulled some fog off my brain to look again at what's been staring me in the face.