issie

One anti acid med I tried caused a major POTS flare. So could be med connected. I've had POTS since I was younger than her. Can be genetic connections and also something passed on. Majority of my family has some sort of autonomic nervous system dysfunction. With me, looking into the immune system and inflammation has been my best solutions. Issie

So happy to hear that Janet. I'm glad my efforts with the docs are paying off for others. Makes me glad to have been an aid to learning and discovery. Issie

Thanks Liz! I hope you are doing better too. I've been off the site for a pretty long time, so haven't been keeping up with everyone. Issie

Not been following this site for a long time. So not sure if you also have MCAS. But it goes along with POTS and EDS. (We call it the trilogy.) I seldom have gut issues since I changed my diet. I find that Tramadol and Bentyl are my best meds for both EDS and POTS. Bentyl is a muscle relaxer and helps IBS too. Tramadol helps pain and all the neutotransmitters. Used off label on those that SSRI and SNRI don't work for. But I try to stay low and cycle off them or they stop working. If I come off every few months for at least a week or two, a lower dose keeps working. That has been my best POTS med. calms my sympathetic system down. Both given to me from docs at Mayo. There is a good forum where there are lots of EDS people called Inspire. Issie

Then I guess clonidine could have helped your symptoms? It is a vasodilator. _________________________________________ I used it for a little while. But got really tired of being tired. I also started having really bad edema while on it and thats when my kidney function started going south. I think the tachy helps with the blood flow issues. Something has to pump our blood upwards, in order to keep it from pooling. That may be why, my subset type finds, when we walk our heart rate can decrease. We have the muscles in our legs helping our heart to pump the blood so our heart can slow down.

Thanks! Issie

Likely the hot water hits you there and heat vasodilates. Issie

Yes. As I said earlier - I've tried it all. That was absolutely the WORST thing I EVER tried. I can not vasoconstrict my veins. That compounds all the problems. If anything I vasodilate. There are different subsets of POTS people. We can not all be treated the same way. And some things suggested by docs I question for ANY of us POTS people. Issie

This article describes a perfect description of a mast cell degranulation episode. The treatment in a severe response that may affect the heart (called Konuis Syndrome) is treated with nitroglycerin and allergy meds. I'm this subset type and it describes my responses perfectly. I don't agree with the suggested treatments however. If you notice it talked about this subset as being vasoconstricted and a need to vasodilate. This is true for me. But, there is a fine line as to how much. My doc feels with my known biofilm with pathogens problem - the biofilm adheres to the vein walls and narrows them down and also interferes with their ability to expand and contract properly. Addressing the immune system and breaking down this biofilm and what it houses is my best defense. This has been my best direction of anything I've tried. And I have tried it all. I tried the Lorsartan too. With already having low aldosterone and renin levels, lowering them more made me feel a whole lot worse. As did trying to expand volume with salt. Not to mention how hard that is on the kidneys and veins themselves. And vasoconstricting with already too vasoconstricted veins, with meds and constriction. Was not good and caused more problems with neuropathy in already damaged nerves in my legs and feet. And lowering NE, which is our bodies compensation to try to get blood to our heart and head through already too narrow and dysfunctional veins - is so wrong. Our bodies do this to try to save us. Yes, it's uncomfortable. Yes tachy is scary. But it's necessary until the core problem is fixed. The best thing I've done is work on the immune system and inflammation. You can also change your diet and work on things you can change. For me it works. I don't think there is a magic pill, I believe it takes lifestyle change and with time you may see improvement. I have!!! Issie

If you do a search on the forum, you will see what I think about salt. I don't salt load and I don't agree with most of the traditional POTS suggestions. Issie

There are a few supplements you must use if you are vegan. B12 and iodine - I use kelp.

Everything!!!! I had at one point with this illness been chair bound. My tachy was severe and I had very high NE levels as a compensation to improve blood flow. I had severe edema and blood pooling. Was naseaueous a good bit of the time. Had IBS and trouble with elimination and digesting foods. (No problems with that now.) Was overweight with insulin resistance. I had bad brain fog and was worried I was getting dementia. Forget standing, shopping or singing. I had tremors throughout my body. With tachy came severe anxiety feelings. High NE can do that to you. My bp swings were drastic and tachy happened constantly. Part of that was MCAS related. Turning over in bed could set that off. I had shortness of breath at times and feelings of near faints. (Now, I can sing again. But still have to sit to do that. Before I couldn't sing as it would activate my sympathetic nervous system.) I can swim and ride a bike and shop without having to ride a cart. I can travel now and it doesn't totally wipe me out. I'm trying to just give symptoms of POTS. All the other things I listed above have their own set of symptoms. As for weight, I needed to lose. You have to do this diet smart. You MUST get enough plant proteins. I use an app to keep up with my proteins and fats called SparkPeople. It is free and has been very helpful. Carbs are what give us our energy. Without them we have fatigue. When I converted over there was an adjustment period. My body had to get used to the additional fiber. I had to get used to different foods and learn to like some of them. My taster has totally changed. There also is a die off if there are these pathogens. It gets worse before it gets better. You can read up on what is called a "herx". It is not pleasant, but very necessary. You may think you are reacting to something - but, it could be the die off. The diet that Dr Fry guides his patients to is Dr McDougall. He has a web site you can get more info from. He also has several books. I also like Forks over Knives and Dr Gregor and Engine 2. I keep up with the info they put out on their sites. It keeps me motivated and going in the right direction. There is also a book called The China Study that shows how this lifestyle is healthier for us. Know that any time you drastically change a way of life, there is an adjustment period. You can't do it perfectly. And your body and mind have to adjust. You've spent a lifetime of doing things a certain way - all that's gotten you is SICK. To have a change , there has to be a change. No one else can do it for you. It takes determination and being ready in your mind that you want things to be different. The work starts with us. We have to be willing to do it. There is NO MAGIC PILL. I had a very hard, trying and emotional year. I was a caregiver to both of my parents. Both of them at their home to start with and then in seperate nursing home facilities. I had to try to be there every day for them and manage their care with hospice. Both my parents died within two weeks of each other. I was away from my own home and hubby to do this. I also managed their house and affairs and my own. I came close to crashing. But, never did all the way. This was 10 LONG and painful months. I would have NEVER been able to do this before. I know this has made a HUGE difference for me. Issie

Yes, thats the HyperPOTS subset. Mine used to do this too. Issie

I bumped up the other articles Issie

http://forums.dinet.org/index.php?/topic/26246-long-awaited-article-the-best-thing-now-seldom-have-severe-pots-or-mcas/ I posted a new thread with published paper of Dr Fry

http://forums.dinet.org/index.php?/topic/26246-long-awaited-article-the-best-thing-now-seldom-have-severe-pots-or-mcas/ I posted a new thread with published paper from Dr. Fry

http://forums.dinet.org/index.php?/topic/26246-long-awaited-article-the-best-thing-now-seldom-have-severe-pots-or-mcas/ I posted an update and published paper by Dr Fry.

http://www.termedia.pl/Journal/-76/pdf-23697-10?filename=putative%20biofilm.pdf/ (This is a pdf download version.) I haven't posted in awhile because I was waiting for this article. Dr. Fry has been trying to get his research published. There is so much red tape to go through to get the information out there. Many of you new ones don't know me. I haven't been on forums very much in the last few years. It's hard to believe it has been 2 years since I first wrote about finding out that I have a co-infection to Lyme and a protozoa that is newly discovered. Dr. Fry has been doing research on this protozoa and has connected it to many hard to treat illnesses. I'm not his only POTS patient either. There are several of us and some of us have had good results. One of Dr Frys patients is also a doctor. He was so sick with POTS he was bed bound and had to stop practicing medicine because of his POTS. He is now back practicing and rides his bike thousands of miles a year. He also tells all his patients to do the diet that has changed our lives. First I'll tell you what all I know I've had. (For those that don't know me.) I've had this since I was a young child and am now in my 50s. It is also in my family. I have two nephews with POTS, and we think my neice. My sister has CFS and OI. My grandmom had POTS (we think). My mom had MCAS (we think). I have HyperPOTS with high NE levels and mostly high bp that would drop me into a more normal range. When this would happen I would feel very dizzy and faint. (Thankfully, I only fainted twice.) I also have MCAS that landed me in the hospital with my heart and what appears to have been Kounis Syndrome. I have EDS and FMS. (I wonder if these are not one and the same.) I also have vitiligio and alopecia. At one time tested positive for Lupus. I have Hypogammaglobulinemia and no immunity to pneumonia. I have/had Chronic Kidney Disease that was at stage 3 (I almost don't even have the markers for that any more. I'm at the high end of stage 1.) I have/had a coinfection connected to Lyme and this protozoa. I also have mutations in my methylation pathways connected to MTHFR and other genes connected with that. My improvements have been - seldom does ANY of these illnesses stop me from living my life. Everything has improved. I'm not totally over any of it. But, I'm mostly GOOD these days - instead of mostly BAD. What I have done is address my immune system and inflammation. The biggest key to this is DIET. I'm a whole food, plant based, starch based, LOW fat -----VEGAN. That means NO ANIMAL products and very low fat. I try to keep my fat under 20 grams a day. Dr. Fry found that this protozoa loves fat and it allows them to remain alive and happy. Which makes me sick and unhappy. I have noticed a big difference with this. When I splurge - I can really tell in how I feel. I also was not to supplement with magnesium. Magnesium keeps the biofilm that the protozoa, virus and bacteria live in ----very strong and houses them In a shield to keep them alive and well. Yes, we may be low in magnesium because it is being used up by these "aliens", we dont want. Dr Fry hopes this will balance out with a better management of these invaders. Sadly, however, there is no known cure to completely erridicate them. We just have to try to get our immune system to do the best it can to keep them at bay. It is not known if these can be spread from mother to fetus and with sex or not. (It is thought that Lyme can be spread. This protozoa is similiar to malaria and that can also be spread.) There is no MAGIC PILL. The one thing we learn from our family, for generations, is dysfunctional eating habìts. A good bit of our immune system is in the gut and we have to address it at that level. The one thing we have complete control over is what we put in our mouths. I feel, food and alternative supplements can be the epigenetic answers we are searching for. Dr. Fry has has me using low dose Doxycycline and anti-malarial herbs. At least two hours before either of those I use Lumberkinase that helps to break down biofilm so that those two things can do their job. I also use a good probiotic and use other supplements. For most of these two years Ive also been using GastroCrom, this helps me alot with my MCAS issues and addresses my immune system at gut level too. I still using Allegra and Zantac nightly. I'm going to list the threads where we talked about this in the past. The one is very long and has a lot of listed reference materials. The first post here, as far as I know, is the longest one that DINET has had - at least since I've been a member. It is rather heated, some were not as open minded as I was to the possibility of this as being a cause. But, here it is. If you want to read the newest post first, start at the bottom and go up. If you want to really understand the reasoning and science - read the reference materials. This was really thinking out of the box when I first presented it. I had a lot of push back. But I'm glad I stuck with what made sense to me and it worked. I feel like this saved my life - LITERALLY. I dont think I would still be alive had I not found this and took it seriously and did it to the best of my ability. I feel like this was a miracle for me. Im not 100%, but I have my life back and I HAVE A LIFE. Hope this helps some of you too. Issie 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/ http://forums.dinet.org/index.php?/topic/23855-interview-could-this-be-one-piece-of-our-puzzle/ http://forums.dinet.org/index.php?/topic/24079-good-news-improvements/ EDIT 2016 - I found that I am getting calcification in soft tissues. Research shows two things that could cause this. One is not using Vit K with Vit D. It helps keep the calcium in the bone. The other is lack of magnesium which moderates calcium. More current research on Lyme shows that yes biofilm does use magnesium to get stronger. But it also uses calcium and iron. Another Lyme doc I recently read about feels calcium is more an issue than magnesium. So knowing that my body is showing signs of a magnesium deficiency and too much calcium - I'm using transdermal magnesium spray a few times a week. Can't say that I feel any different, but maybe it's helping to get calcium more in balance. Also, added Vit K to my supplements. Another interesting note is Vit D can be low in your body to try to adjust too high calcium. If your calcium is high, likely Vit D will be low. It's a self regulating thing. I stopped mega dosing Vit D, it just wasn't coming up with more and now I think I know why. EDIT 2017: Dr. FRY went into research only. He no longer sees patients. He has now decided that what he had felt was a protozoa is a mold/fungus. It does still form biofilm. He is addressing it more with antifungals. I've gone down a different path with a Shoemaker/Klinghardt trained doctor. There is a lot of testing that can be done for mold/fungus. And there can be genetic markers that will make one unable to throw this off. I'm positive on all testing done, so far. My new doc is Dr Jennifer Smith in Scottsdale, Az. If you see her tell her I recommended her. She is fabulous! Issie

It can be used for a severe mast cell reaction along with antihistamines. It saved my life one time. It also made me have lots of questions as to whether or not I needed to vasodilate or vasoconstrict. I have HyperPOTS and more high bps. With me, vasodilating to increase blood flow has been a better option for me. There is a fine line though. Too much and that's not good either. Different subset types. Issie

Antibodies indicate that there IS an infection or problem. They attach to that problem in order to help the immune system fight it off. If there are antibodies, the immune system has put them out to try to fight something off. Having them may be a good thing, unless the immune system is in over drive and attacking the body. Finding out why you have them ìs the goal.http://www.morphosys.com/technologies/antibodies/function http://biology.about.com/od/molecularbiology/ss/antibodies.htm Issie

http://www.treatlyme.net/treat-lyme-book/a-review-of-lyme-infection-tests-pass-or-fail.html One doctors thoughts on the reliability of Lyme test and why. Issie

There are other protozoa that can be even worse and more widespread than Lyme. Delivered not only by ticks but also mosquitoes. It requires a special high powered detection device and stain to see. Dr. Fry says this one can invade the entire body and he feels is the cause of most of our problems. Treatment is the same as for Lyme and co-infection and also malaria. With diet being the main focus? It has to be low fat, whole food vegan. As you can see from my other post, with autoimmune dysfunction, animal proteins in any form, could be a problem. Issie

http://nutritionfacts.org/video/alpha-gal-and-the-lone-star-tick/ Here is a little more on how antibodies and the body may react to certain proteins. Issie

Yes, see post I just put on. http://forums.dinet.org/index.php?/topic/25587-something-to-consider-in-regard-to-antibodies-and-another-pots-person/ Issie

http://nutritionfacts.org/video/tick-bites-meat-allergies-and-chronic-urticaria/?utm_source=rss&utm_medium=rss&utm_campaign=tick-bites-meat-allergies-and-chronic-urticaria&utm_source=NutritionFacts.org&utm_campaign=70ccfa9432-RSS_VIDEO_DAILY&utm_medium=email&utm_term=0_40f9e497d1-70ccfa9432-23372221 http://m.youtube.com/watch?v=trw2LbwtJN4 Something to consider. Issie