issie

Thanks for the info all - I'll pass it along to my neice. Issie

Hey guys, Thanks! Bump is just a way to bring an old thread to the top - you "bump" it up. Yes, I'm still doing good and things are continuing to improve. All my numbers were good the last time things were checked and I'm seeing improvements with everything. I'm not getting the tachy with standing every single time. I still have the dizziness at times and the issues with mast cell things. But, that is better too. The meds that I'm on and the diet seem to be making an improvement. I'm not completely "well". But, things are much better. I'm not having as much brain fog either and that terrible uneasy, out of control feeling - is not as intense or as often. My blood pressures are much more level now and not having the terrible swings. Still tend to be more on the higher end - but having more near normal readings. Having more energy and being able to do more and stand longer. Having some much better days! Issie

No, not Lyme but a co-infection that goes along with Lyme and also a protozoa called FL1953. Issie

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futurehope, I'll bump the thread that I first talked about this on. You can do a search on the forum and put in protozoa and there are many places where I've talked about what I'm doing and my results. There are others who have found that they have Lyme and co-infections and we are all doing similiar supplements. But, not all of us are doing the same diet. I don't know why they are not doing the lower fat - because my doctor feels really strongly about that as a key factor. He is also attacking biofilms - which is a substance (like a protective forcefield) around the protozoa, bacteria, virus to break that down so that the immune system can see and recognize these things and eliminate them. Issie

Yayyyy! Major happy dance! Issie

I've reversed Chronic Kidney Disease Stage 3 down to Stage 1 with this diet. It is working for me and things are improving in so many ways. There is fat naturally in vegetables, beans and peas. Dr. McDougal doesn't limit those at all. My doctor is limiting my fat because of a health reason (it feeds the type of protozoa that I have and will help it to remain strong and healthy ----and possible keep ME from getting that way.) When I've messed up and eaten more fat - since I've been doing this for about 5 months now ---it makes me feel awful. My stomach hurts and I just generally don't feel well. Sticking to the diet has been a good thing and not sticking with it - makes me miserable. I do however use a vegan DHA. My doctor approved of that - since I felt that I needed more fat that would cross the blood brain barrier and improve cognitative function. There are additional supplements that he told me to use with this diet also: iron, iodine, B12. I use a few more things then these - but, these are the ones he specificially said to supplement. Issie

Liz, Thanks for the information. I'll forward it to my neice. I was here visiting this week and found that she has a whole lot of testing that hasn't been done on her. I hope that more testing can be done and more answers found for her. Did they do a catacholomine test and also blood volume testing on you? It would also be a nice thing to have a good doctor in mind for when I visit Alabama, if I were to have problems. Issie

People who see doctors in Birmingham ----are you all still happy with this doctor? I have a niece in law looking for a doctor to help her with her POTS up around either Birminham or Montgomery. Can people give me a list of the doctors available there? Issie

Anna, Thinking that may be true. However, I know with myself ---sometimes when my bp and hr are perfectly "normal" ---I still feel POTSie. Not thinking that the bp and hr are all there is to POTS. There is more than that and even if this part isn't "registering" an issue. I think there still is one and it goes deeper then those numbers. If there is an autoimmune issue and an inflammatory issue - that would still be there. Tweaking some things and not correcting the core issue - will be like putting a bandaid on a sore. It's still there, just covered up. Issie

In the conversion process line of things ---NE comes after/from dopamine. So, me just thinking out loud. Seems that dopamine would probably be high if NE levels are high. Those with low dopamine - probably would not register as high NE with standing. Just me thinking out loud. Don't know for sure. Would be an interesting poll topic --if someone wants to make one. Issie

I don't remember if my dopamine levels were checked or not. Will have to go back and pull out the old testing. What happens with those with high NE levels and those that they seem to put into the hyper response catagory - is the lying and resting NE levels change considerably when you stand - it raises up abnormally high. There should be a rise --but, not to the levels that it goes. That is how they determine this. I don't know of another test that they are doing in this regard. If both resting and standing levels of NE are high - they start to look more at pheo's. There is some theory that this rise could possibly be compensatory response. Which means --it could be a good thing. It causes more constriction of veins and it could help with blood pooling and also blood flow back to the heart and brain. I don't think this idea has been researched or proven to be the case --but, it seems to make sense. I think we have a lot more to learn yet. Issie

Hmmm, Rama - I appreciate your "ramblings". I didn't see this thread until after I questioned this on another thread. I want to re-read this and get a better grasp on what you said. Issie

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If EDS was the cause of POTS ---why don't all EDS people have POTS? They don't. I don't believe it's the cause. It's just something else we add in as one of the symptoms. Another DX. Along with MCAS - which seems to be just as much an issue with those with EDS and HyperPOTS symptoms. We have to get to the core reason. We aren't there yet. I keep saying what I think it is and that's what I'm treating ---the immune system. Also inflammation and working on genetic mutations. Working to get around the dysfunctions there. Supporting the body as best I can via diet, and supplements, some low dose antibiotics and antimalarial herbs and enzymes. I think I place almost as much value in the diet as I do anything. But, the combo of it all is making a BIG difference. And I don't think that I'd get trapped into a placebo effect. I've got lots of friends and family noticing my improvements and that is undeniable. The treatment for Lyme/protazoa is making a big difference for me. Issie

I have apenea and HyperPOTS. I don't think it is the cause of POTS - but, maybe a consequence of. Issie

Rich, I'm sure hoping this will make a difference for you. Finding the pieces of the puzzle and getting things put together makes for a lot more peace of mind. Sort of lifts a heavy burden - because, now you are starting to figure things out. Hoping that there will be some sucess in your treatment, now that you know more what you're dealing with. Issie

You learn to cook with spices and learn how to make things taste good with different variations of spice. You also learn to appreciate the "true" flavor of what you're eating. You will start to look at them differently and taste them in a different way. Issie

I use no soy. Tofu is high in plant fats,. I use vegetable broth to saute in. I make a lot of soups with it too. Baking veggies and steaming is also good,. There's lots of cook books and receipes available. Issie

Thanks Kim ---I feel loved! No worries, I'm really conscious of my nutrition. Issie

Yes, that's basically it. A small amount of fruit too. Think WHOLE Foods. Foods in it's natural state. If it's refined or processed - it's not whole. It can be cooked or raw. Some veggies are better cooked - nutrition wise. Some books and websites that I like are : Dr. McDougal - Forks over Knives, Engines2 Diet (is this doctors son - who is a firefighter and promoting this type of lifestyle.) There are many videos that you can look up and it gives some good advice too. Hope, if you decide to try this - that you will enjoy it and get good results. Funny, every time we go somewhere my hubby is telling someone about my diet. He drives all over town to find resturants where I can eat and will go in to order for me (if it's to go) and tells the watress there that I'm vegan and low fat and he figures out how to keep me on my diet. I guess - the improvements must be apparant ---as he is all for this now. What a skeptic he was to start with. It's nice to have his support and also good that it is making such an improvement with me. Issie

Kim, There are a few supplements that you take when you are vegan. B-12 and iron are two. The other thing he told me to take is iodine - I take kelp for that. (Not daily a few times a week on all these.) I do keep up with the amount of protein I get in a day by keeping a record of my foods and nutrition on a program called SparkPeople. It's free and it keeps up with all that for you. You just enter your food in each day - then you can tell where you need to tweak for best support. Yes, vegan is totally no animal products. To convince yourself of the "smartness" of this move - you must research a lot and look at some videos and statistics to convince yourself to go this way. I did a lot of research before I could even commit to it. I'm very careful to make sure I'm getting what I need nutrition wise. Issie

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.

The vegan diet change has been a big benefit. The more I researched it I realized how it plays into the immune system and why some things would work better for me. With the type of protozoa I have - the doctor thinks that fat feeds it and for me that is one of the hardest parts of the diet. But, I have gotten used to that. It's funny, when I first started this - my husband was really skeptical. Now, he tells others that they should do my diet. He's on board and is a big support for me with it. I actually lowered the severity of my chronic kidney disease with this diet. I went from being in stage 3 down to stage 1. I still have to be careful what I do because of my kidneys. But, just that improvement in a few months time is unbelievable. Most doctors think that once you have kidney disease it is downhill from there. I'm expecting that all my levels will start to improve with more time. There are lots of ups and downs with the treatment. Times where you feel near "normal" (whatever the definition of that is) and times when you think you will never "recover". But, I'm seeing more good days then bad now and intend to stay on this path. Hope it works as well for you too. Issie