issie

http://m.youtube.com/watch?v=trw2LbwtJN4 Something to consider. Issie

I used to believe in lots of supplements, but don't as much as I once did. I think we have issues breaking down proteins properly and wonder about concentrated parts of proteins. Concentrated anything becomes more of a medicine. Since my diet change, and trying to get my nutrition that way, things have greatly improved for me. I still use some supplements, but not all of them daily. Issie

Glad it's making a difference. Issie

My hyst. Was my 8th surgery with complete removal of everything, at age 36. I too think I've had POTS most of my life. I dont do well with anesthesia and have to make sure they give me less with anti nausea med with it. FYI, they are thinking there may be a connection with endometriosis and MCAS. I also had massive ovarian cysts. Didnt do well with any type of traditional replacement hormones. My best results came with red clover and a small amount of estriol compounded gel. My DX came after my surgeries and my symptoms for sure got worse afterwards also. But my abdominal pain was resolved and that was worth it all. It took many years for my hot flashes to stop. I was told I would have them until my normal time of menopause was to occur and then it would get better. This seemed to be true. But, many of my hot flashes were caused by mast cell degranulations and when I addressed this, the hot flashes almost stopped. When I have a MCAS flare, they come back. Issie

Yeah, Dr. G and Dr. Lewis got really tired of me insisting they start treating us if there seemed to be an issue. Most of us when in a flare are just too sick to get to the hospital to get the scientific proof. Im glad all my books of copied info made a difference. Poor Dr. Lewis, read it all too. I was really impressed with him. He was very open minded. And didnt just brush it off. He had sticky notes all through it. Treatment for this has been one of my best things. Issie

Potluck, I recently experimented with Gabapention. It for sure helped sleep and pain, but sent me into a MAJOR POTS flare. Wasnt a good experiment at all. Could be your cause of the surges increasing. Was for me. Issie

You have to not use too much b12 either. His body might not uptake it propperly and he could get sicker because it's not going into the cells properly. Some are using a teeny tiny bit of lithium (homeopathic amount). It will help the cells uptake and use b12. Many have found gluten free to be a huge benefit even without a true allergy. I only use the moly two times a week and my b12 4 times a week. Being vegan, its important to supplement b12 and this seems to be enough for me. Issie

With my having issues with rheumatica protomyxoa and co-infections connected to Lyme, these and virus and bacteria live in biofilms.Magnesium feeds them and fats make the biofilm stronger. I want to break down the biofilm with enzymes so my antibiotics work. Im not to use magnesium as it will make the organisms stronger. At first you notice a decrease in your levels, but as the organisms die, they stop using so much of it and then you balance out and get it with your diet. Im lowfat, whole food vegan. Even though I have issues with sulfites, I do very well on coconut milk. Im allergic to almonds and anything in that family. Rice milk is good, high in the B vitamins. But I prefer coconut milk. As for oils, I try to not have very many even with cooking. What I use for brain function and for the essential oils is Neuromins DHA. It is a vegan essential oil. I use it a few times a week. I also use methyl B12 and kelp a few times a week. I dont think we need supplements daily, except for vit D3 and maybe Turmeric if tolerated. I rotate everthing. Of course my enzymes and antimalarial herbs and probiotics are daily too. Gluten free is essential for me, as is being dairy free. Issie

I too have CBS issues with high ammonia, FYI. I use methyl B12 and yucca also molybdenum. Thats my balancers. You're getting closer. Be careful with your supplements, some increase sulfate and could potentially make you worse. Since we are so sensitive to "anything" we might have to start out with a minuscule amount, that you may think wouldn't do anything - like homeopathic amounts. Not all of us will tolerate folic acid - used for MTHFR mutations. (I don't. ) There's a lot of trial and error with this. Expect a herx and detox. But take it very slow. Issie

There is a certain order you have to treat methylation mutations in. If you go the loop wrong, you can make yourself very sick. If you have a CBS mutation, you have to address that first, even before MTHFR issues. Keep reading and take it very slow. One thing at a time. Glad you're learning more pieces. Even though one may not have celiac, many of us have found a sensitivity to gluten and staying gluten free has helped us. Issie

I tried to do diet first and then herbals, but noticed more results when I added the doxy. I take doxy only 3 days a week and my herbals 4 days a week. Works for me. I have to be strict on the lowfat part of my diet. When I splurge, I pay. Keep us posted. Hope you get good results. One other thing I must use is turmeric. I tried coming off and crashed big time. I use it daily. Issie

Look up Forks over Knives, the Mcdougal diet and Engine2 . You will get a wealth of info from there. There is a learning curve. Im lowfat, whole food vegan for a year. Gluten free, and dairy free. Vegans have NO animal products. Im better than I've been in years and everything has improved. I do need to supplement methyl b12, vit d, and iodine. Otherwise, I was told if eating a variety, all is good. Doc keeps lab work current and all is good. Issie

Glad you are finding answers. As I have found with myself and this being my best treatment to date, take it very slow and expect a herx. As I told you via PM it gets worse before it gets better. We found it more effective to use lumberkinase at least two hours before either the antibiotic or the antimalarial herb to break down the biofilm. Then at least two hours later a good probiotic. I think I told you of the knotwood product that I'm using and the probiotic. I rotate between the doxy and the knotwood on different days. I wasnt able to go up to the strength the doc wanted me to. But still getting good results. I feel my lowfat, whole food, vegan diet is as much as or even more important than the med protocol. Im one year into this and doing so much better. Not completely well, but for sure on my way. Im a different person, my results are pretty amazing. http://m.youtube.com/watch?v=r8tESJVvM88 This is a three part talk, and was interesting to me. Shows how some things can be missed with inaccurate testing. Keep us posted. Issie

Im not on the forum much any more. Seems the same questions are still being asked by those searching for answers. I seldom even come here and read and I'm doing very little research these days. I'm so much better that I'm not feeling the need to participate very much on any of the forums that I once talked on. Just wanted to let others know that there is hope and things that can be done that makes a big difference. I credit my sucess mostly to diet. This helps to modify the immune system and inflammation. I'm still on the low dose antibiotics, anti-malarial herbs and enzyme to break down biofilms. That also helps modify virus and bacterial issues. Also helping the immune system. I have also found it very necessary to stick with my MCAS protocol. Tumeric has also been extremely necessary for me. Since I also have EDS and FMS using a very small dose of Tramadol and Bentyl has been some of my best POTS meds. Im a HyperPOTS DXd person. With higher bps with standing and high NE levels with standing. Both of these things are/were a compensatory thing and necessary and needed. Ive been doing this diet for over a year now. Sometimes I would no longer even qualify with my bp or hr to have POTS. Im not completely well, but very much functional. Im very happy with my progress. I have been in contact with another one of Dr. Fry's patients who also is a doctor in AZ. His POTS was so bad, he was bed bound. He does the same protocol as me and talks about POTS in the past tense. He logged on his bike last year over 9000 miles. He attributes his success to this protocol and exercise. He had to start out really slow. But this is after 3 years for him. Im jazzed about my progress so far. Ive had POTS since I was a child and I'm now in my 50s. Genectically, its in my family. My sis has OI, and all 3 of her kids have POTS. One has MCAS. And all 3 of them have EDS. If I can improve, anyone can. It for sure takes a lot of determination. It doesnt happen overnight, it will take time. But, I'm significantly better. If you want more info about this with articles and research, there are two other threads of mine on this forum. One of them is very long, 17 pages, I think. But interesting info there. I think the main thing is to address the immune system and inflammation. Issie

Dr Fry is not at Mayo. He is in Scottdale. He does testing for this specific protozoa at his lab and sends you to another lab for Lyme and co-infection testing. (I had mine done at Labcorp.) Im still doing so much better. Endurance coming up considerably. Can do more, stand longer and have less issues all the way around. Seldom research these days. Feel , like I found my IT. Its a slow go, but definitely a step in the right direction. Im under considerable pressure and stress right now and so far, holding up well. Not crashed yet. Issie

I think our diet may be one of our best medicines. Correcting poor habits and making sure we are getting as much nutrition as we can from what we eat. Correcting issues with flora with probiotics and maybe prebiotics. That old saying we are what we eat, may be a big part of our problems and maybe our solutions. As Rachael pointed out, if you can read through this long post, I've included lots of information and lots of references with more information to back up whatever I've said. You dont want to blame everything on POTS. I made that mistake recently and almost got put in the hospital with a very bad UTI. I think my system was detoxing too fast and I couldnt throw things off fast enough and got the infection. Same thing happened with another girl doing this same routine with diet and treating this protozoa. Dont hesitate to ask questions and check things out when your body is telling you that something is wrong. Issie

I think you probably should seek a doctors advice. Im not able to give advice, just here to comment on what is helping me. My hope is that it will help others. Issie

Thanks! Hoping the coming stress wont set me back. Issie

I asked Dr. Fry today if the labs show that people have low magnesium when we don't take it as a supplement - since it is being used by the biofilms and protozoa. He said initially it might show low and then as we continue the diet and get things more under control - it should come up. The foods we eat has plenty of magnesium in it and we don't need to supplement any more. We are not to take Epsom Salt baths either - because it is magnesium. He suggested that I start trying to get into a dry sauna too. Very small amounts to start. He said that getting the core body temp up is very good for this. I asked about a heating pad on the stomach and he said that's not enough. We need to get warm enough to sweat. He said the dry sauna should be a little different with my POTS than a wet one - say with a hot shower. That will get me. I also asked why I have to sleep sitting mostly upright. He said it has to do with the veins and their function. That is also why an abdominal binder helps me. He said that when we lie down it affects the jugular veins and he bets mine are not functioning properly - due to being clogged. He wanted to do an ultrasound to check it out - but, I can't do that right this minute. When I get some family things settled a little more in a few months - we are going to get a little more aggressive with my treatment. I don't need to take on more stress right this minute and what the next steps are could cause a herx and I don't need to be dealing with that right now. Issie

I dont really remember if it caused a herx because I had problems with herxing with the diet and low dose antibiotics already when I added it back to my supplements. If you use the Immune formula one, potentially it could, because it works like an antibiotic due to the olive leaf. The olive leaf is also known to lower the blood pressure in some people. The information from the company says to give it at least 3 months. Some people notice a difference pretty quickly and others it takes longer. I read of one person that it took 6 months. But, with me I felt something pretty quickly. I used it years ago. Not sure why I stopped taking it. We tend to do that when we get better, thinking maybe we dont need something. Right now Im on a maintenance dose and not taking it daily. I take it a few times a week now. I couldnt do the front load this time like the company suggest. I took it slower. Colostrum tends to have a calming affect on the nervous system. But, at the same time, it gives energy. You are not to take it too late in the day - because it may give you too much energy. Issie

I cant say whether or not the levels of magnesium with testing would show up low. You would think analyzing what is thought to happen with it being used by biofilms and what live in them - that might would be the case. I havent asked that question. But, I can. I eat rice and potatoes, veggies and fruit and whole grains. I dont use soy - cause I react to it and its high in fat. Doc allows it, in small amounts but you have to plan for it ---same with nuts, avocado etc. Things high in fat. We are to use little to no oil. Some resturants sautee veggies in oil and I tell them to go low oil - just enough to cook without burning. We cant seem to avoid it entirely - all the time. But, you want to avoid it as much as possible. I use protein vegetable source powder in smoothies for breakfast and that seems to hold me. I eat beans or peas daily and asparagus is high in protein. Lots of veggies are. You have to plan and know the nutrition value of things. You can find that out by using SparkPeople and entering your foods in there until you feel comfortable knowing you are doing this diet in a healthy way. It is very enlightening to do this journal there. Know that if you do this, it will take time to see results. You may also have a die off and herxing and worse symptoms before it gets better. If this happens, you know you are doing yourself good. This in itself is a sign you are on the right track. Keep me posted on how you do with it. Issie

Oh, with this diet, I checked my nutrition levels before I stopped eating animal products with a program called SparkPeople - you can enter your foods and it gives you the nutrition value of what you eat. I have way more nutrition on this diet. Nearly all my levels are improved as for nutrition. All my blood levels are improved. Science confirms that things are improving for me. And my activity level and improved POTS symptoms prove it too. Issie

I have my iron levels checked regularly, that's one thing you have to watch being vegan. I eat two pieces of okra a day - pickled - for iron. No issues on that. I will have to look to see if he's checking magnesium and calcium levels - not sure he is. But, also not feeling like there is a problem for me either. If you can't get the test, and few will be able to, just because of where they live, it doesn't hurt to try the diet. You may go into a herx with it and feel awful for awhile. That's the die off phase and also just adjusting to the new way of life and eating. But, if you feel a whole lot worse ----you can assume it's doing something and then after a few months you start to feel better. Know ----for sure ----- you get a whole lot worse on the diet to start with and then it gets better. I know that lactoferrin does help and despite colostrum being from milk -----I'm still taking it. I use the Immune formula of Symbiotics Colostrum. It is also an alternative to IVIG which helps the immune system. I think my doc would prefer for me to use Transfer Factor - but, I think I need what's in this particular product ---so sticking with it. Issie

Just a little update. The last few weeks I went on vacation. I snorkeled twice and didn't have hyperventilation either time. I did get POTS one of the times. in the water, but the water was a little rough and I think I got motion sick. I took a couple of very long walks (3 miles one day and 2 miles another day) and that was really, really good for me. I was able to go pretty much every day. At times, I had a few issues, but nothing to stop me and put me down. I'm for sure doing better and things are continuing to prove that to me. Even my husband now is telling me to stick with it and he tells anyone who is having health issues they need to do the diet. He hasn't completely converted, but is more that way than not. We are also doing gluten free and of course since it's a vegan diet - dairy is out. When I messed up on this trip with my diet -----I really felt it and paid for it. Amazing that we don't realize what we are doing to ourselves on a daily basis -----UNTIL ----we change what we are doing. Issie

Since diet is the main thing - that's a good starting place. The doctor feels that our magnesium is low because it is being used up by the protozoa and will balance out when it gets more under control. I'm no doctor and can't advise anyone about what to do about that though - as an imbalance can cause heart beat issues. For me, I used to take magnesium daily and haven't for months. I'm doing okay without it. There is magnesium in the foods that I eat and that seems to be okay with me. There is also calcium in veggies too. I just pay close attention to having a variety of veggies, fruits and whole grains. I mix it up and am really conscious of getting what I need and making sure I'm getting enough protein from my plant sources ---I'm doing good with this. You can get too much fat with a vegan diet too. I have to watch my fat with what I have on this diet too. 20 g is not a lot of fat for a day. He has found with his research that more causes issues. As for the low dose antibiotics - there are herbal alternatives. I also use anti-malarial herbs, enzymes and probiotics. Issie