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/?hl=protozoa Big discussion on this. My doctor also thinks that Lyme or protozoa infections play a big role in POTS. But, I'm not sure that it is the complete "cause" of it, for me - but, if you're positive for it ---it would only make sense that treating it should improve things for us. I'm encouraged so far and find myself improving with my diet change and treating this with supplements and meds. I'm mostly working on my immune system and getting it to recognize things that it is letting slip by and working on inflammation. It's a slow process and takes time. But, I really feel like I'm getting better. Not totally well. But, any improvement --I'll take. I've had several PM me and let me know that they are also positive. So some of us are finding this to be an issue for us. Also, the DINET info pages says that Lyme has been found to be a possible cause of some dysautonomias. 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/?hl=protozoa Yes, big discussion on this. Issie

If you educate yourself on the lifestyle and watch video and read as much as you can about it - it makes it much easier to commit to. I like a site called Forks over Knives and also Dr. McDougal's info. There are a lot of videos on UTube about it. I also keep up with what I eat and my vit., minerals, fats, proteins etc. in a program called SparkPeople. That way, I know I'm not being deficient in something. It's sure making a difference for me. Issie

I would look into MCAS (mast cell activation syndrome) - flushing can be one of the signs of that. With mast cell problems - clonidine is one of the drugs that we can use. There could be NE release as many of us with MCAS have HyperPOTS. I have higher bp's as one of my problems. Exercise also can bring on a mast cell release. NE being released causes the veins to vasoconstrict. It can be a compensatory thing in trying to get proper blood flow to the heart and brain. This can happen with upright posture. If there is the same type of thing going on without upright posture and sometimes without even movement - that may be a mast cell issue. (I can have these surges with lying down.) Also, mast cells tend to degranulate at night and can cause sleeping issues. Issie

Heat vasodilates - cold constricts. Could that also be a compensatory thing? It could just be a connection to the faulty autoimmune system. I too have low body temps and tried the thyroid approach to rising body temp. It made no difference. It was thought that I had a conversion issue with T4 to T3 and RT3. That idea, didn't work. Treatment with T3 makes tachy even worse. There are also connections to autoimmune issues and Raynaud's with cold hands and feet. So many of us are finding autoimmune issues. Issie

I think when you look at the ranges, you have to look at the information in regards to POTS and HyperPOTS testing to figure out the ranges that are considered the criteria for the specific illness you are checking for. I've found more papers saying that anything above 650 upon standing. I have seen some that are higher then that - but more seem to indicate that as the starting number. Unless, there is a new POTS paper that I haven't seen with an update on the criteria. Issie

Rama, can you explain why you differentiate between sympathetic activity and dizziness/weakness, meaning why are the two symptoms indicative of a different causation? Are you saying people with dizziness and weakness do not have excessive symptoms of sympathetic activity? It's interesting as I obviously have excessive sympathetic activity and generally don't have dizziness or weakness. Why is dizziness and weakness NOT a sign of excessive sympathetic activity? http://www.permanente.net/homepage/kaiser/pages/f63638.html Kitt, Rama is probably working right now ---so here is an article explaining the sympathetic system and it's response vs. parasympathetic response. Hope this answers your question. Issie

One thing I question is your saying that HyperPOTS is determined with catecholamines levels of greater then 600 supine and over 1000 standing. I have read many studies indicating that the levels are over 600 standing. Here is one by Dr. Grubb. This also indicates that there should be an increase of 10 mm Hg in blood pressure. http://www.ncbi.nlm.nih.gov/pubmed/21947988 I was DX'd at Mayo as being HyperPOTS and my standing levels are slightly below 900. There however is a study indicating that those with lower bp's can have high catecholamine levels and this is many times connected to Mast Cell Activation Disorder (MCAS). http://hyper.ahajournals.org/content/45/3/385.full

*******One thing to note about the following post is that a lot of the results of this is based on individual patient response. It's important to check for individual methylation mutations. This has to do with genetics. There are also labs that can be done to check for deficiencies or excess.***** One of the things that Dr. Yasko and Dr. Mullan are doing is connected with methylation pathway mutations --there could be a problem in BHMT pathways and issues with CBS mutations that could mimic COMT dysfunctions. I don't have a COMT mutation but have mutations on three of the different BHMT pathways and several CBS mutations. (There could be a SUOX problem with sulfite/sulfate - but 23&me doesn't test for that). I do think there may be a connection with POTS. But, not sure there has been any formal research on this. There is also the problem with balance between glutamate and GABA and that goes along with mutations in CBS. Since glutamate is an excitatory neurotransmitter and if the conversion doesn't happen into GABA - that might play a role in the higher levels of anxiety type symptoms some experience. The ideas presented here with this protocol is get the pathways to functioning properly and get things to convert as they are supposed to (at least what is known - because there are many more than just what is presented with this protocol) and the body should start to work better. The main things connected with this are diet which is number one. Then supplements like B-12, Lithium to help with uptake of B-12 and helps reduce excess calcium, (http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-4/ --this talks about excess glutamate vs. GABA balance), Same', folic acid, molybdenum, yucca, phosphatidylserine and choline ---and that all depends on what your mutations are. (There are other mutations - but these are the ones that could possibly be connected to POTS.) Here's the info from Dr. Yasko in relation to CBS mutation and possible Taurine issues that was referred to in the video by Carrie - http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-6/. http://www.heartfixer.com/AMRI-Nutrigenomics.htm - This link is to Heartfixer and they have a lot of information on all the mutations and what to do to try to get them to working efficiently. (Very comprehensive.) (Don't ask me questions on this --because, I'm just learning about it myself. I won't be able to help you - cause, I'm still trying to help myself. LOL! There are however, a few others on this site that are more knowledgeable than me on this and maybe they can answer questions you may have.) Issie

Carrie, I want to thank you for this and appreciate the work you did. This will help others to learn a lot about what is going on with POTS. I learned a lot from it! Rama, thanks to you too for clarifying some things. You amaze me with your knowledge! You guys keep up the good work and keep us informed of the studies and the meanings of those. THANKS!!!! Issie

I have high NE levels with standing - and was classified as Hyper and also have EDS. But, Dr. G is treating some of us with the "cocktail" and most of us are having pretty good results with it. I started out with just one vial a day and worked up. I'm not using the full amount and find that 2 times a day - 2 vials each time - seems to be enough. Somedays when I'm really bad I'll take more - but, that seems to keep me somewhat okay. I found that Zantac seemed to work better for me then the Pepcid - but for sure the Allegra was better then Claritin. So, you may have to play around with it - to get it right for you. Hope it works well for you. Since the GastroCrom works on the immune system - that may be why it's helping us. Did he determine if you have any autoimmune issues going on? Issie

http://www.ncbi.nlm.nih.gov/pubmed/21947988 Here is one study showing the criteria for HyperPOTS. There is an increase in NE with standing above 600pg/ml. or an increase of systolic of 10 mm Hg. There is also an association with HyperPOTS and MCAS. Symptoms like surges of HyperPOTS can happen without postural changes in MCAS. Here is a study on that: http://hyper.ahajournals.org/content/45/3/385.full Interesting thing with this study is that those with MCAS and OI (lower bp's) had higher NE levels with standing then those with MCAS and POTS and also those without MCAS and POTS. This might help to determine why some with high NE levels could have low bp's. (a connection to mast cell problems) This study list the subset types of POTS that was known at the time of the writing of this paper. http://www.medscape.com/viewarticle/522421_3 Issie

I think everyone will find this interesting whether or not you commit to doing it or not. Please take a look and take control of what YOU have control over. Issie

Okay, so I don't lower or raise with maximum breath hold and hubby dropped by only one point and he has asthma tonight. Soooooo, not sure what that means for us --but, there's you two tested. Issie

It has helped me a lot. But, not only have I cut out meat but all animal products. If you research autoimmune disorders - one of the first things that they will cut out with someone that has MS is dairy. Since I believe, with me that genetics, inflammation and autoimmune disorders play the biggest part with me ---the reasons for cutting out animal products became so clear to me. Animal products can cause inflammation and dairy can cause autoimmune issues to be worse. Some have problems with breaking down the proteins and amino acids in animal proteins. I could go into a lot of technical reasons for my going this direction with my diet. But, just those things in themselves are a good reason for me holding the course I've set for myself. The more I study about vegan lifestyles and how to do them - the more determined I am to be one. It takes a lot of determination to make such a lifestyle change. Especially, with the way that most eat today. But, I haven't found it to be too difficult and the results are really noticeable. Even my husband who was an extreme skeptic to start - is slowly switching over to this way of eating. He is telling anyone with health issues that he comes into contact about my diet and what it is doing for me and telling them - you should do it. LOL! I find that very funny - from the before to the after. I figure that diet is one thing I have control over and no one else can do this for me. It's something I have to do for myself. It's not a pill and it could very possibly "fix" something. One thing we learn from our parents and those before them - are our eating habits. If our parents before us had issues with their health and there seems to be a genetic component to it ---what is it besides genes that you have in common with those before you? DIET. Those habits are passed from generation to generation. Could a tweak in our eating habits - change some of the malfunction with the genes that we inherit? I'm hoping so! Issie

LOL! Lot's of newbies here and they might not know how to look things up yet. Keep everyone happy and in the know. Thanks for posting it the 11th time. Just stop counting. Then the next few times - won't matter. Issie

Link????? Issie

I love my diet change of low-fat, whole food vegan. I'm seeing some wonderful improvements. It addresses so many things on so many levels. Mostly the immune system. Things are for sure improving and I do believe it plays a big part. Issie

Thanks for the article. Interesting! Issie

Very interesting. I printed it out to read over a little more carefully. I see some connections that we may can decipher with our 23&me data in regard to the methylation pathways and dysfunction there. Didn't realize what a part that may play with NE. Like for example BH4conversion issues. Thanks for posting this. Issie

I had something similar and I think it was connected to Mast Cell Activation disorder. They kept me over night and gave me IV's and nitroglycerin. I had taken massive antihistamines before I went to the hospital because I suspected it to be an allergic reaction. The final thought was Kounis Syndrome - that is connected to MCAS (mast cell activation syndrome) that hits the heart. It is very scary and when nitro works - even more scary. I felt totally worn out when it was all over and it took days to feel better. Hope you get it figured out. I never want another episode like that again either. I now have two epi pens in case this happens again. And I'm on daily H1 and H2's and mast cell stablizers. Issie

Sue, There are a few docs out there thinking that those of us with the higher bp's and Hyper type symptoms with high NE is autoimmune related. When I started treating in that direction, I started having improvements. Issie

Genetics, autoimmune and inflammation. Work at that level and do what you can to support those things and that will probably be the best we can do. I also have something similar to Lyme - different organism. Some of us finding this out. Comes back to the immune system, not detecting the things it should. Support that and then see what's left after that. Do the best we can with our diet and weight. Try to stay as active as possible. Keep a good and positive attitude. Enjoy life to the best of your ability and appreciate the small, seemingly insignificant things and never take your friends and loved ones forgranted. Issie

LOL! Poor spider. Not sure about it --just glad you're feeling so much better. Issie

I copied this from the Linus Pauling Institute on EPA. Potential for Immune System Suppression: Although the suppression of inflammatory responses resulting from increased omega-3 fatty acid intakes may benefit individuals with inflammatory or autoimmune diseases, anti-inflammatory doses of omega-3 fatty acids could decrease the potential of the immune system to destroy pathogens (223). Studies comparing measures of immune cell function outside the body (ex vivo) at baseline and after supplementing people with omega-3 fatty acids, mainly EPA and DHA, have demonstrated immunosuppressive effects at doses as low as 0.9 g/day for EPA and 0.6 g/day for DHA (1). Although it is not clear if these findings translate to impaired immune responses in vivo, caution should be observed when considering omega-3 fatty acid supplementation in individuals with compromised immune systems. I guess this is why my doc doesn't want us to use too much fat. However, because I felt like I needed more - he is allowing me to use a DHA that is from an algae source. That addition has seemed to help my brain fog issues. I must say, that not having fat is the hardest thing for me. Otherwise, the vegan diet seems great. Issie