issie

There is another girl on here whose husband got it after they married. So, it makes you wonder if there is some sort of organism or bacteria, virus or something. Things that can be passed on or transmitted. Issie

Okay, glad you got that covered.

Nicole, Thanks for listing the things you are on and what all you are doing. Nice to be able to compare notes. What do you think the Adderall does for you? So, your doc doesn't have a problem with you using coconut oil? My doc has us on low fat diet - because he says that fat helps the protozoa to survive. But, I know that caprylic acid that comes from coconut is supposed to be good for yeast problems. So, is that the idea behind or is it for the MCT's. I've read really good things about it helping with brain fog. Issie

I've been giving some of the doc's here in Phoenix copies of the Changes video. They have all been real receptive. Today, saw my liver doc and she looked it up on her computer while we were sitting there talking. She was actually familiar with it and asked some pretty good questions. She thinks she has EDS herself. You never know who we may clue in that may be having issues themselves. Would be great to get more doctors in the know. I also took one to my endocrinologist last week. Also, my Lyme doc and primary got one. Let's get this info out there people. Getting it known is what is going to help us all. It won't be an unknown, rare illness any more. Has anyone taken either the brochure or the Changes video to Mayo doc's yet? There is also a help center in there that gives out brochures on illnesses - may be a good place to distribute the brochures. My dentist is very interested in learning more too. PM me and let me know if you want me to help in that area. Issie

Janet, Those are good questions too. If we have suppressed the NE and it starts to try to compensate again ---will it make the numbers have to go even higher to counter-act what we are counter-acting. Oh what a circle that would be? But, with your NE levels being so terribly high - it's almost like you wouldn't be able to cope with the NE being so high - on an emotional level. At that point you have to do what you have to do. I'm like you ---resistant of taking meds. But, over the years have come to realize that sometimes, it's better to have "quality" of life - then maybe quantity. There comes a point - where you worry less about the consequences and more about just living life in the best way possible. I guess that would depend on your age. If you have a lot longer to live, then the consequences may not be worth the risk. It's really hard to know what to do and which direction to head off in. I have tremors too and when my tachy and surges are going on my tremors are awful. It's almost more then one can take sometimes. But, somehow --we all are some very strong people. Most of us manage quite well - despite it all. Issie

When I say "WE" - I mean people and that would include patients and researchers. And I would have to agree that probably "Most" POTS people don't have Lyme ---but for those that do, you wonder how much of a part it does play in their illness. Issie

I always try to be open minded and not discount any possibility. Science and medicine are always changing and improving. It will be interesting to see with time what the future holds and what different reasons we find.Issie

A diet change may help her a lot. It sure has me. Issie

I think I was born with it. First remembrance after a vaccine when age 8. But, was born with colic and have had issues with problems since birth. Inherited - probably. Also have EDS and MCAS. Issie

Yeah, I have hypergammaglobulinemia. Didn't get the DX until in my late 40's. But, really - now I don't get sick that much either. But, when I do --it really knocks me down. Issie

That feeling could be the surge that we all talk about. Whether or not you truly have high NE levels --not sure. But, that jump out of your skin feeling ---is the horrible ---get your blood to your heart and your head thing that can happen with an increase in NE. NE causes your blood vessels to constrict to try to get the blood from pooling in your limbs and get to the more vital places ---heart and brain. As Rama said - it appears there is not proper response to it and there is more release. But, we don't always handle the release of it in the best way - because emotionally it's hard to handle. Therefore, my question to Rama ---if we increase NE would that level out the surges and make the surges more bearable? If there were a more steady stream of NE, would the body eventually balance itself out? If this is a compensatory thing - then maybe - suppressing the response is causing more of a response. There's just lots of questions that I don't think we have answers for yet. But, I do think we are closer. Issie

In the brain we get the --I want to jump out of my skin response. Nervous, jumpy, panicky etc. In the heart the tachy. Our body could be trying to react in a proper manner and we are suppressing the compensation that it is trying to do --maybe for a reason. Would the response be less severe if we encourage the response and maybe it would settle out? But, if we encourage the response --how do we handle it emotionally? Rama, do you have the answers for that one? I think it's easy to figure out how to create a response ---but, long term - what will that do to us? Issie

I hear you - it continues on --doesn't it. My first remembrance was when I got sick at age 8 - but, I'm sure I was born with it and I'm 53 now (was sick with sore throats and earaches and intestinal issues since I was born). So, how many years is that. TOO MANY!!!! I picked up some tips along the way. Hope it helps you next time around. Issie

So sorry you are so miserable. The H1 and H2's not helping much? Did you try NasalCrom it can be gotten at Walmart. It is a mast cell stabilizer but is a very weak one. It is the same med as GastroCrom - just lots weaker. Before I got GastroCrom - I used it and it did seem to help. It has been a miserable year here in AZ too with lots of pollen and high allergy issues. I use an herbal that seems to help give me the extra boost when mine are so bad. One by Solaray called Respiration. It does have licorice in it - so be aware that it could increase your bp. It seems to help me and helps to clear up some of the stuffiness and I can breathe better when I use it. It will vasoconstrict - so be aware of that. Hope you feel better soon. Issie

I learned years ago with so many surgeries that I have to be administered cortisol IV with the surgery. Every since they started doing that, I don't crash so bad with the surgery. I just tell the surgeon that with past experience I'll crash without it and they give it to me. Issie

I think it is important to look at physiology here - but, the question was on thoughts about Lyme. It is a given that there is a blood flow issue involved with POTS. We have to get that issue corrected. If we can support the body and get it to working better on it's own ---may be no need for medicines to help with that. But, for now - until the dysfunction is corrected ---we need the bandaid. Get the blood to the heart and brain ---primary issues. Not ignoring those things - just injecting some other possible connections. Interesting that even the web and DINET list Lyme as a possible cause for dysautonomia http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989654/ Here is one article connecting POTS and small fiber neuropathy to Lyme. I must admit in trying to find peer-reviewed articles - there are not many. There are some connecting Lyme to connective tissue disorders and to skin rashes and lung disorders. But, not that many connecting it to dysautonomia. There are however, many forums and doctors who are writing about their findings and connections to Lyme and dysautonomia- but, not peer-reviewed articles. One site has the same questions that Rama has in regards to it ---that person thought that late stage chronic Lyme was being mis-diagnosed and that it should have the dysautonomia DX. But, do they go hand in hand or are they a separate thing? That is the question. Is it just a finding that some people are found with active infections who also have dysautonomia? Or is there a connection? Not sure we will know. But, since I have documented positive IGG testing for these organisms ---for sure working on controlling them is in my best interest. May be just a peripheral finding - but, I've been doing the protocol for this for 4 months now and I'm slowly seeing some improvements in all areas of my health that includes POTS. Issie

Yeah, that's the conclusion I've come to. Do all I can to support myself and then see what's left over after the fact. My diet seems to be making a huge difference and supporting my immune system with diet, supplements and meds - seems to be doing more for me then anything else I've tried. It's like my hubby always says ---do the basics and then find the best Band-aid you can to support the rest. Issie

Oh, Anna ---that depressed me! I know from doing my 23&me that lots of my markers point to my having EDS and also having connections to MCAS. But, when you look at these studies and realize with EDS and the connections with collagen, and some of the other components involved with us life long dysautonomia people - Genetics are a huge issue for us. Those things we can't un-do. We don't even like to say that out loud because we know we are stuck with that part of our illness. We won't EVER get over that part of it. But, we do still have the hope of supporting and maybe reversing some autoimmune issues and have help with inflammatory things. So, not all is lost and we may get a level of our function and health back. Not all people with EDS comes down with POTS. So, there are some very functional EDS people that don't have dysautonomia to deal with. So, I'm hoping that at least maybe the POTS part will improve. Issie

Personally, my feelings is if there is Lyme Disease or a protozoa issue - that is probably an effect not a cause. Why do some have the problem and others do not and maybe you both have been bitten by a tick or mosquito that had the infections? The immune system isn't taking care of the problem in the first place. If the immune system detected and eliminated the problem - then there wouldn't be one. Same with virus, bacteria etc. Get the immune system to functioning better and there may be less issues. If our system was detecting the dysfunctions properly - there wouldn't be an attack on us and what should be protected --the attack would go towards the foreign and what shouldn't be there. (Just my opinion.) Issie

We don't have all the science figured out and sometimes opinion and response matter just as much or more then the science.(Now Rama and I both are talking in riddles. LOL That being said - I think if we do address our immune system and it's response we will get some good results. I found that with myself I do test positive for a protozoa and also a co-infection associated with Lyme disease. The treatment for those two things address the immune system - primarily. My addressing the immune system and the way it detects these organisms (and other things) will help my body all the way around ------and IS! Whether or not this is my primary "cause" ---not thinking it is. But, the way it's addressed by making the immune system detect things that it has just let pass by un-noticed is making other things work better. One of the other things addressed with this treatment is fibrin in the blood stream. With Lyme disease or protozoa problems there is a substance called a bio-film that these and bacteria and virus live in. With breaking up that substance and creating a less gummy environment in the blood stream ---the hope is to also improve blood flow. There are several things that I'm doing for this - one being a very strong enzyme that breaks this up. I do believe that the direction that I'm going with diet and supplements and meds to address these things ---for whatever reason (protozoa or immune system) these things are working for me. I'm a whole lot better. It is a slow process and can't be done fast - but, my improvements are very noticeable and I'll hold the course and see what time brings. It can't hurt me (as long as I take it slow) and it for sure is helping me. Issie

So sorry to hear of the trauma you have gone through. I hope that you will have a speedy recovery. It is scary when docs don't know what to do about POTS. I had a whole bunch of surgeries before getting my DX with POTS and on two of them I was almost lost. The doctors and anesthesiologist were beside themselves. The nurse would not let me sleep. If I'd doze off she'd wake me up. It sure wasn't fun. But, the last surgery I had, the doc did a quick google read, and since it was an emergency surgery ---somehow, they got me through it okay. They over medicated me and I had a hard time getting my bearings after the fact. But, nothing serious happened. Glad you came through with not too much trouble and hope that you are well on the road to recovery. I would look into the EDS thing - especially with the MCAS DX. Seems we are all falling into the same category with the trilogy. Thanks for telling us about your experience. Issie

Yayyyy, for you. That treatment has helped me a lot. Hope you get good results too. I'm glad Dr. G is treating us even without complete scientific proof. Has made a difference for many of us. Issie

I lean towards autoimmune, inflammation and genetics myself. Issie

GastroCrom along with Allegra and Zantac and sometimes NasalCrom has been helpful to me. My neuro doc is who is putting some of us on it. But, that was after a lot of testing through immunology doc. Hope it helps you too. Issie

I just listened to a webinar (Dr. Nancy Mullan) on methylation pathways and what to do for known genetic mutations in that pathway. There are some that require more B12 and it could bring some significant improvements --according to what the docs who are working with this are finding with their patients. She said that one can have high serum levels of B12 - yet it won't be going into the cells properly. They are suggesting homeopathic amounts of lithium to get the body to uptake the B12 into the cells. Now whether or not there is anything at all to this. I can't say. But, that was an interesting thought to me. This doctor said that most of the people they check lithium levels on are severely defective in this mineral. She was suggesting that people start out with the tip end of a toothpick dipped in water and then dipped into the mineral and working up to more. She said that many are so sensitive to the addition of new supplements that you have to introduce them very slowly. Can't say if this would help or not ---just passing along the info. Issie