issie

Dr. Fry does see new patients - but, works in the office only a few days a week the other days he devotes to research. He does take most all insurance and it depends on your insurance as to whether or not they pay for the test. They have had a few people's insurance pay for it - but, require you pre-pay and be reimbursed and you need to submit the papers for the lab test for the protozoa yourself. He uses Quest or Labcorp for all his other testing and insurance pays for that. I do see him regularly - about every 2 months. He keeps a close check on you with labs and symptoms. He makes sure that you are staying healthy and addresses whatever problems you are having. If you plan to see him ----you must commit to the diet. He really thinks that is the key to our health. He will still try to help you, if you don't do the diet ---but, it sort of hinders whatever progress you will get ---if you don't commit. With me, I wanted to know for positive sure that I had this protozoa in order to make the commitment. I wanted to have a good reason for the change. I had a significant amount of the protozoa and also Ehrlichia which is a co-infection that goes along with Lyme disease. Here's some symptoms associated with Ehrlichia and the article I copied it from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC145301/ Multisystem involvement often develops in patients with severe disease and may include acute renal failure, metabolic acidosis, respiratory failure, profound hypotension, disseminated intravascular coagulopathy, hepatic failure, adrenal insufficiency, and myocardial dysfunction Approximately 20% of persons infected with E. chaffeensis develop signs and symptoms of central nervous system disease (99, 105). Neurologic findings may suggest a meningitis syndrome (meningismus, photophobia, severe headache, lethargy, confusion, or cranial nerve palsies), or an encephalitis or encephalopathy syndrome (delirium, obtundation, coma, seizures, hyperreflexia, clonus, broad-based gait, or ataxia) (72, 222). Cognitive impairment is the most predictive indicator of abnormalities Long-term sequelae of central nervous system infections are not well documented; however, persistence of various symptoms, including headache and photophobia (32), facial or ocular palsies (50, 99), tremors (16), diminished memory (138) and confusion (222), for one to several weeks has been reported. Impairment of cognitive performance has been described for some pediatric patients following HME (139). Cough or other respiratory symptoms are described in 20 to 25% of all patients with HME (105, 204); however, pulmonary manifestations, including interstitial pneumonitis (16, 59, 138), pleural effusions (109, 173, 243), pulmonary edema (109, 277), and acute respiratory distress syndrome (155, 211, 213, 215, 246, 271), are frequent components of severe disease. Secondary infections, including those caused by cytomegalovirus, Candida, and Aspergillus spp., have occurred in some severely ill patients (92, 104) suggesting that infection with E. chaffeensis may induce suppression of the host immune system (275). The occurrence of pathogen-mediated immune dysfunction has also been proposed for animals and patients infected with A. phagocytophila The usual symptom complex of fever, headache, myalgia, and malaise, coupled with thrombocytopenia, leukopenia, and elevated hepatic transaminase levels, are features shared by HME, HGE, and E. ewingii ehrlichiosis. However, some differences in the frequencies of disease manifestations exist between HME and the other forms of human ehrlichiosis. Rash, central nervous system involvement, and gastrointestinal disturbances are reported more often for patients with HME than for patients with HGE _______________________________ This is enough info to let you see it could cause some of our symptoms. This is just one organism and there are many that could be co-infections associated with Lyme disease. I asked the doctor, when we talk about Lyme disease vs. Protomyxzoa rheumatica what are we talking about. His example was ---See that plug in over there if you look at the size of the prong spaces and say that's Lyme - then the magnitude of this Protomyxzoa protozoa would be the size of the whole room. So, if one co-infection can have all those symptoms associated with it and this protozoa is more complex, more invasive of the body ---what kind of effects can that have on our body. I know I have these things. Labcorp found the co-infection and I have DNA proof of the protomyxzoa rheumatica and pictures of it. I'm getting better ---what else can I say. It has to be playing a part in everything. Issie

Good article. Doxycycline has been found to help with autoimmune issues too and that could be the underlying reason that some have problems with these organisms in the first place while others may not. If we can get our immune systems to functioning better and recognize the things that we don't want in our bodies - then we may be a lot healthier. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2312368/# Interesting article on doxycycoline helping suppress P25 which could cause atrophy of hypocampus and neuro dysfunction, affects genetics and inflammation with increased cytokines. Granted, it's a mouse study ---but, what if this would help us humans too. Interestingly, I'm taking a small/low dose of doxy for my protozoa problem. For sure my brain function has improved and so has my POTS. Maybe, this is the reason. Here's some really interesting articles that I ran across showing that even if there is a genetic defect and doxy is given - it could potentially help with the genetic dysfuction and prevent neurological dysfunction. (Epigenetics ---maybe????) http://www.holtorfmed.com/index.php?section=downloads&file_id=65 http://onlinelibrary.wiley.com/doi/10.1002/glia.22496/abstract http://www.off-label.com/drug/resultsdrugus.cfm?drug=doxycycline http://cds.ismrm.org/protected/09MProceedings/files/00542.pdf Issie

All really good questions. I'm not sure what the answers are however. I think it has to be a player in the combination of all of it. I'm even going to go out on a limb and say that with the Hypermobile form of EDS - this protozoa could be a player in that too. It's the only form of EDS that can not be tested with genetics. I have no proof or research to back that statement up ---just something that I wonder about. I really think that there is a connection with all of it ---including POTS. But, time will tell what difference we may see. You have to go really slow in breaking down the biofilms as when they release from the vein walls - if too much is released at once - there is a potential problem for blood clots. So, this is something that will take time to see the full results. With my POTS, I can stand longer and do more. I still have POTS, but things are better. And, I have less problems with things coming out of joint with my EDS and less pain. My edema is rarely seen these days and there are some days that I show neither a heart rate or blood pressure reading to indicate POTS. I still have the herx reactions and when I'm in one of those ---everything is bad. But, that comes in cycles and for the most part ---things are greatly improving. Issie

Yes, things are looking up and yes it has been brought to the forum by me and a few others that are being seen by this doctor. Just thought it had gotten too long - now on it's 14th page. LOL! Not sure everyone would want to read through all of it. But, lots of good info there if you want to read for awhile. http://forums.dinet.org/index.php?/topic/22047-new-doctor-new-ideas-could-this-be-the-answer-or-at-least-a-part-of-our-puzzle/ The doctor is in Arizona. Issie

With me, having autoimmune issues involved in my picture ---one of the first things that is eliminated is Dairy. That is a given - so much research shows that dairy contributes to autoimmune problems. For those that have come off dairy, many of their autoimmune issues come into check. There is a big debate between vegans and those that eat meat as to whether or not animal products is advisable. I'll leave that up to others that are more versed in the science to discuss that. I'm not here to initiate a debate as to whether someone should or should not be a vegan. But, for me - with my doctors encouragement and lots of research on my part ---it is making a difference and things are greatly improving. I have even reversed kidney damage from Chronic Kidney Disease ---all with this diet. I went from Stage 3 to almost into Stage 1. This is unheard of --most think when there is damage ---it can't be reversed. I'm one of 4 of my doctors patients that this diet has done this for. It's not something that one goes mindlessly into. It takes a lot of research and making sure that you are doing it healthy. It's not something you make your mind up to do one day and eat Corn Chips and Salsa and Drink a Coke ---that would be vegan --but, not healthy. You have to make sure that you get enough beans, peas and lentils and that will give you B vitamins. I'm well aware of nutrition and alternative treatments. I could write you a book on what things are and what they are good for. But, this is a whole new approach - in trying to get your nutrition from food and NOT supplements. I have lowered the amount of supplements that I take down to only a few times a week vs. daily. I'm for sure having better labs and more happier and healthier days --than I've ever had. I was just recently introduced to another person who has MCAS and her approach is with diet and not antihistamines or medicines. I'm just learning about her findings, and find it fascinating. Diet plays a key role in the function of our bodies and can affect inflammatory cytokines and inflammation. What we put into our bodies makes a huge difference and it is the one thing we have control over that we can change for ourselves. Issie

I found this on another forum (Inspire) and the person who posted it name is Bellagunn. I want to make sure this person gets the credit for the information. Passing it along. _________________________________________________ Mast cell disease is caused by mast cell activation, either by degranulation, growth or a combination of the two. There are many different mutations that can cause mast cell activation leading to mast cell disease. AMast cells can be triggered to grow or degranulate through other mechanisms but the c-KIT activation is the primary malfunction implicated in mast cell disease.

Hanice, sorry you didn't find being vegan a good fit for you. You really have to pay close attention to your nutrition. I keep up with what I eat in a program called SparkPeople and it tells me the nutrition factor of what I've eaten for the day. If I get too low in something I can correct it the next day. Not all vegans eat healthy. It is important to make sure that you get the nutrition and vegetable protein necessary for a healthy body. Since I've been doing this I've found that my nutrition has greatly improved from when I ate whatever. I'm actually getting more vitamins than I was before and my health has improved considerably. The key to this diet is low fat ---animal products are not low fat. Most vegans don't eat low fat either. So, it's a challenge to do this diet properly. But, for me --it has been one of the best things I've EVER done for myself. One thing that you must supplement with this diet is B12 and Iron. Those things cannot be gotten with a vegan diet. So, he tells us to supplement those things and iodine and Vit D. Issie

I really question the use of salt. You can look back on my post and find out why. It's one of my soap box subjects. It also causes problems with the immune system. I have those upper body, shoulder spasms and in the neck thing too. I think part of the problem for me with that is Ehlers Danlos. I constrict my muscles to try to keep myself upright and held together and that causes the muscles to fatigue and then the cramping. That's just what I think - not sure if that is it or not. Sounds like glutamate could be having a role in your symptoms. You can make sure that your diet isn't contributing to some of the problems and like some of us are doing - we are trying B-1 to see if it helps. Issie

Yes, I'm on low dose doxycycline and antimalarial herbs that rotate. Also, using lumbrokinase to break down biofilms (some also use natokinase or serrapeptase, but lubrokinase is more potent) so the antibiotic meds and herbals can do their job. The diet that is recommended is Dr. McDougall's diet. He has books out and also you can find him online. You can get some good information from Forks over Knives and Engine 2 diet sites. There is a lot of information on the net about why low fat is so good for you. The more I research it, the more convinced I am to stick it out. It's not hard being vegan ---what is hard is being low fat. As for aspirin, I never asked about that. I'm not able to take it because for me, it triggers a mast cell release. Some mast cell people do however use aspirin to try to cause a slow, steady release rather than a massive dump that can happen. But, that slow release is too much for me. So, I don't use aspirin. I do however use herbals to thin my blood - the two I like the most and they also help with pain is ginger and turmeric. Issie

There is a lot of talk going on another forum about possible B1 deficiencies. I posted a thread awhile back on this as it seems to fit our symptoms. Some are titrating this up to see if it will make a difference. It would also moderate the balance between glutamate and GABA. http://forums.dinet.org/index.php?/topic/22120-b-1-dysautonomia-autism-mito-miagraines-issues-with-wheatmilksugar-problems-with-glutamates-heavy-metals-epigenetics/?hl=thiamine#entry205796 Issie

Here is an interview by my doctor that describes what he has found and why he feels it may be an answer to people who may have many hard to treat neurological problems. I've been following the protocol for about 7 months now. I'm not well, but have had some great improvements. The hard thing about the discovery, however, is how hard it is to tame. Once you have this organism, it is thought that you can never totally eradicate it. It is something that would require lifestyle change to keep under control. But, if like I suspect, there are genetic weakness that may hinder the immune system from recognizing pathogens, virus etc and they live in these biofilms. Getting the immune system to work better and breaking down these biofilms will help it recognize the things it should. I'm expecting to give an update later this year with some more, new, information. But, for now, consider this as a possibility, and maybe a piece of the puzzle. http://protomyxzoa.org/wp-content/uploads/2013/04/Protozoal-Infection-Dr-Frye-Interview.pdf Issie

I'm trying to keep all the information that is new and relevant to this protozoa in one place. I found an interview that Dr. Fry did on the protozoa that he discovered and you can see from the interview why it may be relative to and have an affect on POTS. It's exciting that there may be an explanation for many of the neurological issues and possibly diet could correct a lot of the problems. This also tells why he feels that low fat and not using magnesium and arginine are important. Could it be that we are creating a lot of our illness due to ignorance? Could we correct some of our problems with diet? I'm doing a lot better. Not well - but, noticeable improvements. http://protomyxzoa.org/wp-content/uploads/2013/04/Protozoal-Infection-Dr-Frye-Interview.pdf Issie

I was accepted into 23&me to be studied, with others, because of having MCAS. There are other forums that are talking about the different snps you can look for. There is a group on http://uk.groups.yahoo.com/group/theelephantproject/ that would be able to answer more questions for you on this. I sort of dropped research on this, at least for now. As for POTS meds that help with Glutamate/GABA balance - there are things that help with this - but not everyone who has tried those things have the same response. One thing that works on NMDA receptors is Tramadol. But, there are some that this hasn't worked well for. I've wondered if people would show up with high levels of dopamine and also high levels of glutamate. It would make sense that this would be the case. I just heard of one person who did find that to be the case, on another forum. Some are using methyldopa which will help to lower dopamine and that in turn should lower glutamate. Dopamine is a precursor to glutamate. http://forums.dinet.org/index.php?/topic/15376-methydopa-prescribed-today-any-info-on-vandy-trial/page-2 Here is a post talking about how methyldopa works. Note - that it would lower your blood pressure. It would not work on glutamate directly but indirectly by lowering dopamine. It should calm the sympathetic nervous system and would also lower NE. This is used mainly for those that are HyperPOTS with high NE levels. With recent research however, I feel that high NE levels may be compensatory and the bodies way of trying to correct an imbalance and trying to get blood to the heart and brain. It is trying to increase blood flow by increasing the heart rate in trying to get the blood to circulate and pump blood to where it's desperately needed ---the heart and brain. So, even though this is a horrible feeling and scary - it may be how the body is trying to correct a dysfunction. There are so many theories out there right now and lots of possible answers that are floating around. I'm not sure that we have the complete answer - but, we have small pieces of the puzzle. We need to determine why the blood is having a hard time circulating and getting to where it needs to go and why does it pool in the lower extremities. Is it catecholamine imbalance or is that compensatory? Is it imbalances in neurotransmitters? Is there something wrong with the veins themselves - something causing problems with constriction (plaque, protozoa)? Faulty valves, or too sludgey blood? There's still so many unanswered questions. Issie

http://www.drweil.com/drw/u/QAA400873/Getting-High-on-Nutmeg.html Chocolate is also high in glutamate which is an excitotoxin. I thought that nutmeg was high in it too - but, wasn't able to find confirming reports of that. You imbalanced your GABA/Glutamate balance and with the nutmeg being a psychedelic drug and the heart rate hike that occurs with both with tachycardia ---it's no doubt why what happened to you did. That out of body feeling likely was from the nutmeg and the combination and lots of it ---was enough to do you in. You were "stoned". I guess what was written in the above link is true ---one wouldn't try that again. Hope you feel better soon. Issie

My guess is you were going through a die off reaction. It's called a herx. It will make you really sick before you get better. Some of us can only use a low dose - like a few a week to avoid such a violent reaction. We are super sensitive to meds and even more affected when we detox and have die off. We have to take things a lot slower. Issie

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It doesn't sound at all crazy - because of my having researched it and knowing that's what you have to do to treat it. I do a lot of alternative things and am only on the doxy as an RX (for the protozoa and co-infections) - the other things are alternative. I'm doing really well. Making improvements daily. I'm about to start on another antibiotic like alternative so will probably be thrown into a herx. But, I know that the long term results will be good. I'm loving my diet and noticing some wonderful improvements because of it. I really think I'm on the right path and making these improvements in my life was the right direction to go. Let us know if you get to try the doxy again. I'm thinking it may help a bunch of people for different reasons ---autoimmune and inflammation - mainly. Issie

Katy, What all were you on? Was it when you had Lyme? What was your end results and do you think you may have chronic Lyme and maybe it would help again? Issie

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2312368/# Interesting article on doxycycoline helping suppress P25 which could cause atrophy of hypocampus and neuro dysfunction, affects genetics and inflammation with increased cytokines. Granted, it's a mouse study ---but, what if this would help us humans too. Interestingly, I'm taking a small/low dose of doxy for my protozoa problem. For sure my brain function has improved and so has my POTS. Maybe, this is the reason. Here's some really interesting articles that I ran across showing that even if there is a genetic defect and doxy is given - it could potentially help with the genetic dysfuction and prevent neurological dysfunction. (Epigenetics ---maybe????) http://www.holtorfmed.com/index.php?section=downloads&file_id=65 http://onlinelibrary.wiley.com/doi/10.1002/glia.22496/abstract http://www.off-label.com/drug/resultsdrugus.cfm?drug=doxycycline http://cds.ismrm.org/protected/09MProceedings/files/00542.pdf Issie

I don't take B-1 daily. But, I do have a good bit of it in my diet with the type of foods that I eat. I used to believe in mega vitamins - but, have since changed my approach with this. God gave us food to support our bodies. If we put the right things into our bodies and get it to working at it's optimum - then we will probably need far less then these mega doses. Anything we put into our bodies has to be used/discarded. If there is a dysfunction in the body - things won't be utilized properly. That's probably why such high doses are needed for the results to be seen. We have the power to take control of what we do/take in to our bodies and that just may be the key to it working better. The hard part is making ones mind up that you will do it and then following through with that decision. Issie

There is another forum that I'm on that is talking about this. The doses that most are using with results are any where from 300 to 1500 mg. So, with some - it is a lot higher than with others. I'm a low-fat vegan and since starting my diet a little over 6 mo. ago ---my POTS is greatly improving. I have also been on 250 mg of B1, but not daily. My diet is naturally high in B-1 because of rice, beans and green tea. So, just thinking there is a connection with this. I'm not well ---but, better then I have been in years. Issie

http://www.ncbi.nlm....68/#!po=2.27273 Really interesting article. Shows how much a part diet plays into things. I have a feeling B1 will be something that a lot of others will soon be trying. Just keep in mind that it could potentially ramp up the sympathetic system ----some will have paradox reactions and each person will react differently. Always go low and slow. Issie

Yes, general consequences and risk with surgery. You never know what "could" happen. But, you always hope for the good things to happen. Nutcracker syndrome is a different issue and one that I was sure others would eventually pull up. He said that usually there is a lot of pain with it and also blood in the urine. It is listed as a possible "cause" for dysautonomia. Interesting that the 3 patients he has with it ---DOES NOT have POTS. He said it is very rare. Yes, been dealing with my kidneys for awhile now - didn't know if it was heart, kidneys or both. It's both. But, I'm working on it. Things are improving. My diet has reversed the kidney disease from stage 3 up to stage 2 - almost stage 1. I was at stage 1 and now regressed a little. But, was told that it can vary from day to day. Sooooo . . . things are improving. I'm better then I've been in years. I'm glad you got it figured out and when you have it "fixed" ---hopefully, you will no longer even have POTS and this will all be a bad memory for you. Issie

I talked to my urologist today about you and he said that they should tack up the kidney. Of course, no surgery is without risk. But, he said it could be done. Interestingly, he started talking about nutcracker syndrome (which is a known cause of POTS), he said of the 3 patients that he has with this ---NONE of them have POTS. He said that one of the treatments for nutcracker syndrome is to loosen the kidney and have it drop down some - so that the compression on the renal vein is released. They don't want to move the veins and arteries around because they feed the bowels and could cause issues there too. I have been having problems with lying on my left side - and it causing POTS and tachy. He said that it could very likely be due to my having EDS and things being overly stretchy and compressing on the kidney and/or renal veins and causing this. The absolute last resort is surgery - because of the possible consequences - especially with an EDS person. But, he said that likely that is the problem. The way to know for sure would be an ultrasound while lying on that side. But, since there is little that we could do about it --don't really see the point - just don't lie on that side. LOL! Of course, I do have Chronic Kidney Disease - so have to keep a close watch on the function. But, that is improving with what I'm doing with my diet. So, all is good - come back in 6 months. I LOVEEEEE my kidney doc. Issie

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644268/#!po=2.27273 Really interesting article. Shows how much a part diet plays into things. I have a feeling B1 will be something that a lot of others will soon be trying. Just keep in mind that it could potentially ramp up the sympathetic system ----some will have paradox reactions and each person will react differently. Always go low and slow. Issie