issie

New Doctor - New Ideas - Could This Be The Answer, Or At Least A Part Of Our Puzzle?

251 posts in this topic

I just found a study suggesting that glutamate receptors (NMDA) having an effect on tachycardia and response with NO and it's effects with orthostatic problems. Here's the link:

http://www.ncbi.nlm.nih.gov/pubmed/23735844

I've been saying for awhile that I felt glutamate/GABA balance was a big problem with POTS. Maybe, science is getting closer to figuring it out.

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thanks for sharing Issie!

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A bit of an update and a surprise meeting.

I'm in some sort of flare with my back and was sent to see a Spinal Therapist Rehab doctor ---guess what!!! He also "HAD" POTS and was treated and DX'd at Vandy. He no longer has tachycardia and says he is not completely well but would say that he "HAD" POTS and doesn't any more. He says he still gets dizzy sometimes if he stands too fast. But, he is able to work and function in life and guess what he says was his "CURE". He started going to Dr. Fry, changed his diet to low-fat, whole food vegan and takes low-dose antibiotics for the protozoa. He has been doing this for 3 years. Before his POTS was so bad he had to move in with family because he couldn't care for himself. He was nearly totally incapacitated. It was so encouraging to see that someone else is taking the path that I'm taking and has had such wonderful results. He totally believes that Dr. Fry's ideas and findings and his treatment is the best direction for us to go. I know for myself, this has made more improvements in a positive direction than anything else I've tried. And I can honestly say ----I've tried it all.

I'm sticking with it. It's making positive changes. It will just take time - since my body has so much going on. This mostly addresses the immune system and breaking down biofilms and getting to the pathogens that live within. Diet, I think is our key.

Issie

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Hi Issue,

I haven't made the diet changes (although I should). But, I've been on antibiotics (for a sinus infection/strep) for 2 1/2 days and my pots symptoms are already feeling significantly better. I believe there is something to it for some of us.

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I asked the doctor if he was still taking his antibiotics and he said he was and never wanted to get off them. He felt that those along with the diet is what is keeping his issues at bay and said that even though he sometimes gets tired of the diet and trying to do it correctly, when he doesn't do it correctly ---he pays for it. He felt that it was essential. He also said that he started doing saunas. I was like ----WHAT? That would kill me with POTS. He said it did him too at first. But, now he feels that since he's worked into it - it is actually helping him. I know I prefer heat to cold. Cold weather makes me hurt so bad. But, I do better with heat. But, not thinking I'd like a sauna at all. I have to be careful with my shower water. He said this is one thing that helps with the pathogens.

Issie

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I am going to read all the pages in this post but can someone tell me how you get tested for this protozoa?

Aren't antibiotics bad if you take them for such a long time? I don't think my doctor would be willing to write me a scipt for 2 years of antibiotics but I am curious. How can the antibiotics help pots? Also why would you need to take them for years?

Krys

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If you have this protozoa there are several ways to "tame" it down. Once you have it, you always have it. So far, they don't know of a way to totally get rid of it.

The low dose antibiotics are one way of eliminating the protozoa once you get the biofilm broken down enough to expose them to the immune system. They are very good at hiding from the immune system and creating havoc in the body. Doxycycoline is the antibiotic used most of the time. There are also articles showing that low dose antibiotics have been used with success to improve the immune system. I posted that article in another thread.

http://forums.dinet.org/index.php?/topic/23784-doxycycoline-possible-help-with-neurodegenerative-diseases/?hl=doxycycoline

Some people are controlling this with diet alone. Though I think the ones of us that are using either the antibiotics or the herbals that address it are noticing more improvements. This is treated a lot like malaria. It is very similar.

When you read this thread you will find out more about the whys and how to. I know it's a long thread and has had a whole lot of viewers. Hope it gives you a direction. Diet is one thing we all have complete control over and the one thing people refuse to change.

My doctor feels that there is a problem in the vena cava. There are two parts to this vein. One goes to the brain and the other brings blood up from the lower body. If there is a blockage of this with biofilm and pathogens that live in it - unblocking this should improve our function. This would increase the blood flow to the brain and improve all over blood flow. I found an article of another doctor talking about this when I was researching it last night. Here is the article I found.

http://mdwme.blogspot.com/2013/04/dr-paul-cheneys-latest-observations.html

If we breakdown the biofilm that adheres to the walls of the veins and unclog the veins and that should improve the function of the vein because it's not something rigid causing dysfunction with contraction ---that should iimprove our POTS. This protocol also address the immune system - the protocol of low dose antibiotics, anti-malarial herbs and diet.

There are certain things that we have to avoid. The main thing is high fat - that means we have to be low-fat vegan. The other things he has found to be important is limit arginine (wheat) and also magnesium. Arginine and magnesium keep biofilms strong. My doctor feels that we crave magnesium and he feels that we deplete it due to use by the biofilms. If you get the number of biofilms in the system down – then the magnesium levels balance out. There will be a period of low magnesium until you can get your system working better. Magnesium was one thing I was very resistant to give up when I started this. But, now that I’m having such improvements by doing my diet – I have to trust that my doctor knew what he was talking about. I also have less tachycardia now. Not as many problems all the way around. I asked him one time about continuing the magnesium because I felt it helped my sleep and he said in the long run you just keep yourself sick because you increase the strength of the biofilms and then you can’t get to the pathogens that live there. You will get worse before you get better —but the end results will be worth it. (That’s proving to be true for me.)

I’m not advising anyone to stop their magnesium —-you have to have a plan and that in place before you can consciously make changes. I had to research this —to death —-before I was convinced that this was the proper way for me to go. Once I understood the reasons behind it and the science. I could finally commit to it. You have to be willing to commit to it for the long haul. It won’t happen over night. This has to be a slow process. You can’t break off the biofilms in a fast way. If you think about what the consequences of that would be —-blood clots. It has to be done slowly and gradually. There are many ups and downs and times of thinking you are worse (cause you are). But, each time I’ve gone through a bad spell, the other side has made me stronger and improved.

Issie

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Funny, I have started going to saunas too. I was on vacation with some friends in a cold place, and went in and out for a few mins to warm up. I didn't have any problem. I then started going at the gym - working my way up,to longer times. I keep my hair and clothes wet and bring water in with me, so I don't overheat. I put my feet up on the wall so that blood goes down to my head. I do sometimes feel dizzy, lightheaded when leaving but it goes away in an hr or two with no lasting side effects.

A handful of times I have spent the afternoon in a sauna/steam bath type place. For the past week or so I was having a mini flare. I had already made plans to go to the sauna with a friend, so I decided to go yesterday against my better judgement. I went armed with extra meds, etc in case I got sick and was actually surprised to leave feeling much better than when I arrived.

The worst of my POTS has been behind me for several years. I did not try the sauna until well after I was stable. I still have symptoms and am on a low dose of Paxil. The sauna helps with my circulation, muscle tightness and extreme pain in neck and shoulders. It is also good for my skin. If I do it right before bedtime it helps me sleep.

I would have never imagined that going to a sauna would make me feel better. It is counterintuitive and am sure it would make many people with POTS worse, but not me. It just goes to show that there are no "rules" with us.

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Hey Issie,

I'm so glad you are doing better. I learn something new every time I read this post. Progress is slow with Tyler, but some pieces of the puzzle are making more sense now. Diet is a key for him but so are probiotics and digestive enzymes. The Gut has to get well for the body to function. He will be seeing a new neurologist next week. Most likely a PANDAS diagnosis is coming.

Rachel

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Yogini, interesting that saunas help you too. I really can't stand the cold. I like the heat and my heating pad. I know the heat also vasodilates the vessels. I've always thought I was too constricted and found herbs that dilate me - made me feel better.

Rachael, glad to hear that diet is also helping your son. Going more low-fat, vegan has sure improved my health. I Just have to make sure I get enough plant protein. That is very important. If I find I didn't eat enough beans, peas or high protein veggies in the day - I'll have a pea protein smoothie with frozen fruit. It's yummy. (I use the LifeExtension one.) If I still feel hungry this is very satisfying. The other little girl that has Pandas and POTS was found to also have protozoa and Lyme. So, may be a good thing to check. She is doing a very similar protocol to mine. I haven't heard from her mom lately - so can't say how she is doing. But, last I heard - she is better.

Issie

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Playing devil's advocate here Issie.... :) I do worry about this long term antibiotic use. When I had the infection that triggered my illness four years ago, doxicycline was the only oral antibiotic that was still effective against it. Otherwise I would have had to go with one of the "big gun" IV types. My doc said because doxicycline was was one of the older ones it wasn't used as frequently so hadn't had so many antibiotic resistant strains develop yet. However, recently I'm seeing on many forums how many people are using doxicycline for various reasons as somewhat speculative treatments and it's concerning to me. We have very few antibiotics left that still work and once they have been made worthless due to antibiotic resistant strains arising, we're in a boatload of trouble.

Sorry, it's just my background of having seen REALLY REALLY nasty infections in the hospital setting that have arisen due to the misuse of antibiotics that makes me super concerned about this.

I am really glad you are doing better. I know your doctor is leading the research in this so hope he can get his ideas published soon so other docs can see what he's thinking and hopefully replicate his research.

I know there was another thread on here recently from someone about her naturopath telling her to stop her vegan diet because it was too low fat and interfering with her health. When she started adding more fats into her diet she started doing much better, so again it appears there isn't a one size fits all answer for any of us.

Since you and I have discussed our situations at length we know that we have very opposite types of symptoms so am just putting this out there for others who read this. :)

Hugs!

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Not everyone is using the antibiotics and I only use them 3 days a week and only one pill on those days. So, this is very low dose. This is a very planned and calculated use of antibiotics. I'm not sure how the doctor I met is using his - but, that is how I use mine. I've had problems with overdosing of antibiotics in my past history and it is in the back of my mind the same concerns. But, this is something that I'm paying very close attention to. I appreciate your concern Chaos ---let's me know you care!

I know that Dr. Fry does different things for each of his patients. One of my other friends type of antibiotics and amount of use was different than mine. So, he treats each person as an individual case and it is different for each patient.

There is a lot of information on the net about the low-fat lifestyle and why it is felt that it is better for a person and their long term health. This is something that I had to research a lot before I was willing to commit to it. That is the hard part of this diet. It's not hard being vegan. It IS however, hard to be low-fat. This is a very controversial subject even among the vegan/vegetarian crowds. The biggest reason for the low-fat with this protozoa is that it feeds it. It makes it happy and keeps it around. I don't want it happy and around in my body. So, it's worth lowering my fat to try to contain it. I can definitely tell the difference when I have too much fat (and yes I've done too much more than one time) vs. staying low fat. I feel awful with a high fat diet now. However, I do think we need certain fats and I added a vegan DHA to my supplements called Neuromins. That gets the proper type of fat to your brain to keep it functioning properly. This was an acceptable addition with my doctors approval.

We are all different, yet similar in that we suffer from the same type of illness in label (POTS) but our presentations are all so different. I think this is true for a lot of the illnesses that people are dealing with that is not completely understood. I personally, feel that CFS/ME, OI, FMS, POTS, MCAS and maybe even HEDS may all have similar issues and be like the elephant and the blind men.

http://wws.peacecorps.gov/wws/stories/stories.cfm?psid=110

Depends on our presentations as to what DX we get. I also think that once a "cause" is found for one of these, very likely the "cause(s)" of the other illnesses will be soon to follow.

Issie

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I don't have a protozoa. My POTS is about as "simple" as they come. Mine was post-viral, I have improved over time (before trying a sauna) and don't have any co-conditions. I think the sauna helps to relax muscle tightness improves my circulation and makes me fall asleep. I am always freezing cold, so it feels nice to warm up! So the idea may not be as crazy as it sounds.

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Yogini, Glad you have/had a "simple" form of POTS. Not sure I've ever heard it referred to that way. Glad you are doing so much better!

Issie

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I have read this whole post and need clarification please.

Which test do you all recommend other than igenex? My CDC says no my igenex says yes.

Other test? Docs at MAYO say noway.

Also treatment? What actually worked for you.

I have had candida in the past and don't want to antibiotic up (what if its not needed and compounds the real issue yeast?)

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Issie, I also need the heat. What supps help your vessles to dialate?

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Sountherngirl,

Diet is the main thing. The one that he told me to follow the closest is the McDougal Diet. Also, Forks over Knives and Engine 2 are all similar. The key is low-fat, Whole food, vegan.

This protozoa can be tested for and your blood sent to Fry Lab. Most insurance won't pay for it - but, mine did. I had to pre-pay and then was reimbursed.

Quest Labs did my testing for Lyme and co-infections. I think LabCorp does testing too.

This protozoa is similar to malaria and is treated like it. One thing that is an alternative to antibiotics is Artemisia. The one I have has other things in it too that address it more so. I use that 4 days a week and the antibiotics 3 days a week. I also take a very good and strong probiotic. You do that at least 2 hours away from either of these two things. You have to break the biofilms down and I do this with Lumberkonise - two hours before taking the herb or antibiotic.

I take the Immune Formula of Colostrum from Symbiotics to help support my immune system too. It is an alternative to IVIG.

I feel that Vit C is important for me because I have EDS and Vit C supports collagen.

I was also low in my Vit D and take a lot of that to keep my levels up. Finally, up to normal now with 10,000 a day. You have to keep a check on your D levels when you take this much.

I take methyl form of B12 a few times a week.

I take Kelp once a week for iodine.

I eat pickled okra - two pieces a day for iron.

I take a lot of other things for one reason or the other. But, none of them daily. If we can get our nutrition from our foods that is more complete than isolating our nutrients from supplements. This is a whole new way of thinking for me. As I used to believe we should supplement everything. I no longer think this way.

I drink a lot of lemon water through the day. This is good for the liver and aids in detox.

I don't believe in salt loading or drinking electrolyte drinks. I do however use sea salt on my food - but, not massive amounts of it.

I have tricks that I use for when I have severe tachy and want rid of it. Black strap molasses and Motherswort. Not at the same time. Depends on if I feel I need more potassium or not. The molasses is high in potassium.

If I think of more, I'll add to this. But, this is a quick run down of what I do.

Issie

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Issie, great info. Thanks so much for your valuable time!

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This appears to be a complex and controversial thread with many people very interested in it.

My post is just a note on the 23andme test which was today banned by the FDA. This is from USA today, today, and I thought it was worth posting here for interest.

http://www.usatoday.com/story/news/nation/2013/11/25/23andme/3699329/

This is not intended to be a comment on or criticism of any one else's opinion here, though it seems good that people have the forum to discuss controversial opinions, in the search for treatment and that is one of the things I appreciate about Dinet.

Happy Thanksgiving,

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I hadn't researched the test, but very interesting to know, POTLUCK. Thanks for sharing.

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That is an interesting article but, really has no backing of proof. Most of us that have had 23&me testing know that this is based on the others that have had testing and linking likelihood of problems based on known issues with certain genetic markers and those of others with the same markers. Comparing that to whether or not others with those same markers develop an illness. They don't tell you that you have an illness - I've never read that they diagnosis anything - but, they can tell you if you have a predisposition to develop something based on your genetics. Just because I may be predisposed to something because of genetics - doesn't mean I will get that - even if others in my family may have it. It makes me wonder if they are feeling like this may be taking away from some other forms of testing that may be more expensive - because this one is rather inexpensive. This article isn't saying that there is faulty information - just that they feel that it is trying to say concretely that a person may have something based on these markers. I, personally, haven't seen this to be the case. Of course with this one gene mentioned that has to do with breast cancer - it would cause one to want more testing. For me, I was accepted into the study on MPN which is also a form of cancer. There is a Mayo Clinic doctor on the board with 23&me and helping in the testing for this one study. Another reason I was accepted into the study. Just because I have the genes for this ---does NOT mean I will get it. But, this is also associated with MCAS in that it can be connected to mastocytosis and so many of us are coming up with this in connection to POTS. I still think that what I learned with my 23&me testing has been very beneficial to me. The download of my raw data into Genetic Genie and Promethease was even more enlightening. I hope that they don't stop people from having this info. I learned a lot about methylation mutations from this testing too and doing the treatment for this has been very helpful to me also.

Issie

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Here's another write up explaining more what I'm saying. People may be putting too much stock in the fact that they have the genes for something - when in reality that something may not trigger and activate or happen. But, being made aware that it is in the family line to me is something I'm glad I know. It makes me more aware that if such and such occurs - to look deeper into this. But, otherwise, I put it on the back burner and not obsess over what could be ---but, only worry about what applies right this minute that I can do something about. If there are preventative things that I can do for certain things - then knowledge is power. If there is nothing that could be done about something ---knowledge is still power ---because the question is answered and there is no longer any mystery. Like for example: on 23&me there are some people digging so deeply into the EDS genes and trying to sort out if their genes are the cause and if this one snp is related to EDS, etc. I don't see the point. You either have EDS or you don't. There is nothing that can be done about it if you do. You can support your health the best you can and that's the best you can do. The only type of EDS that a person may want to know about is vascular EDS and that is to keep a watch on the veins as for aneurysms - whether or not you could do anything about that if there is an issue is still in question. You could have a rupture at any time if you have that form. It might help you to decide whether or not to have kids. But, I'm glad I was born and have quality of life and am glad that wasn't a factor in my birth, despite the things I deal with my health.

I can't get the link to work, but it's under Fox News entitled "23&me whats really wrong with personal genetic testing by Rachael Rettner, published Nov. 27, 2013, in LiveScience.

Issie

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Note, to those receiving instant messages on this link - the above link didn't work and caused me to have some computer issues. Don't click on the link first submitted. I edited and listed the title of the article on Fox News.

Issie

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what about the people who cant get tested. :( the magnesium is a dilemma because many advise it and experience better on them. and then protein, (usually have fats) calcium.
carbs feed fungus.

do people who have it will get low lvl of magnesium in blood test?

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