issie

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

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

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

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

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

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

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

I also had vaccine done right before my symptoms got really severe, i had a T-Dap done for school.

More indications of vaccines triggering something.

Issie

But, thinking about it more. I think a vaccine triggered my POTS. Maybe, it triggered something. My dad got Guillian Barre from a flu shot and there is lasting neurological damage from it.

Issie

Dave, My father got Guillian Barre from a flu shot. It nearly killed him and there is lasting neurological damage that has not gone away. I also feel that a polio vaccine triggered my POTS when I was 8 years old. It also triggered my sisters OI and a friend of ours has some sort of dysautonomia - from the same vaccine from the same doctor. Here's a BIG clue.

Issie

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Could you go see Dr. Afrin? He's in South Carolina. Talk to ChristyD - her son went there and still sees him. She can tell you more about him. There are some mast cell sites that you can also visit and get more of a feeling if you think this is it. Mast cells can affect breathing. Yes, we can have reactions to dye for sure. I've had a lot of those type of test and make sure I take allergy meds before I'm to go through something like that. We take H1 and H2's and that helps. Have you trialed that to see if it makes a difference? I use Zantac 1/2 and Allegra. Exercise can trigger a mast cell release.

One guy has had breathing problems as his main complaint and just found out he has sojourns. Have you been checked for that? He thinks there is more to it with him - but, the breathing is his biggest concern. His name is RichGotPOTS.

Issie

Hi Issie. Thanks for reply. My renin was 1.88, which is within norms. But my aldosterone showed low on 2 blood tests and my cortisol is always high. I looked into Cushings syndrome, but it doesn't really fit with my symptoms. I would say addisons symptoms are more similar to what i am experiencing, but for that cortisol needs to be low and mine is high. My primary doctor wants to try some natural herbal treatment for this, some Chinese medicine. He said he will email me the info about it. I don't even know what to think anymore. I started feeling bad last december and still no real answers from doctors. I hope one day somebody will be able to tell e whats really going on with me. In the meantime i am finding all the info on this forum and thats how i get doctors to perform different tests for me. Thanks.

I think I'm one that had high cortisol for awhile and then it went low. I think the docs are right about how it goes. We are in hyperdrive and just somewhat burn out. I really like alternative meds. If he is familiar with Chinese med. that is a very good thing. I'd go with him. I'd like to know what he suggest to you. Be sure to PM me or write about it.

As for MCAS. The docs that mostly deal with it are immunologist, allergist and hematologist/oncologist. Depends on what you are looking for. Most of us have seen an allergy/immunologist. Dr. Afrin is the pro on this and if I could go see him that would be my choice of docs to see. Not sure where you live. There is a doc here at Mayo, AZ that is working with us too. Our neuro - Dr. Goodman is giving us treatment for it. He is working with a doc that was transferred here from MN - named Dr. Rank. I don't know him - I had seen Dr. Lewis - when I was there. But, the two of them - Dr. Rank and Goodman are working together on our behalf. Dr. Goodman is one of the well known POTS specialist and a very good doc for diagnoisis.

Issie

Issie,

The Nephrologist I see is here in CA. He is really not that familiar with POTS and all its various associated problems. I was referred to him by my Rheumatologist because of the low gfrs and even though they are now normal I still have to follow up with him because of my past nephrectomy. My aldosterone and renin were within normal limits.

Your second paragraph regarding cellulose utilization and a particular gut bacteria is very interesting. I have the opposite problem as you do with regard to weight issues. I am on a losing trend again and trying to find a way to put it in reverse. I would try eating more complex carbs myself but I can't tolerate much of that type of food. Really many types of foods or very large quantities of food for that matter.

On a different note. Do you still eat at Loving Hut ? We still eat at ours but have discovered a somewhat healthier vegan restaurant called Native Foods Cafe. I'm so glad more of them are popping up. Maybe you have one in your area.

Janet

Yeah, love the Loving Hut. We actually have two of them here. There are a bunch in CA. Each one is a franchise and depending on the ethenic type of person who owns it - determines the food. They are all different. We have one here that is Philipino and one Vietnamese. I like them both. I've found a bunch of different places that I can eat. I will Google to see if that one is here.

Yeah, maybe more carbs---make sure you stay whole foods though. I wonder if you could use a protein shake with fruit in it. To make sure I'm getting my protein - some days I use a pea protein powder and frozen fruit.

Issie

Hi Issie. I was reading your post where you mentioned something about low aldosterone. 2 times my blood results showed low aldosterone, but my cortisol is high all the time. I spoke to 2 different endocrinologists about it, but they do not seem to be concerned. They say that because my ACTH chalange test showed normal cortisol levels, then i am fine. But 3 times my morning cortisol was very elevated, almost double. They says its probably due to stress of giving blood, which i know is not the case, because i had blood drown so many times in the past 8 months that i dont even care when they stick a needle in there ( i am sure all of us here dont care anymore). Also my aldosterone is on a low side. One time it was 6, this last time it showed 7. I spoke to my primary doc and he is concerned with my adrenals, even though the 2 endo docs dont care for it. My primary says that they go by the book, and if its not too much out of range then they dont care. He says i need to focus on my adrenals, because he belives most of my symptoms are caused by it. Also he says that since flurinef makes me feel better and its a steroid mean that my adrenals are not functioning right. Does anyone can give me some info on what i am dealing here with. Also how do i get tested for mast cell disease? Thanks.

Did they check your renin levels? That could tell you whether or not there is a kidney issue. If it truly is your adrenals - addressing that probably would make you feel better. Few endo docs will address it if it is still within range. But, there are plenty of alternative type docs that will and mostly it's that type that do. If your primary is paying close attention to it - sounds like he is ready to try some things if needed. If you have high cortisol levels that's indicative of Cushings - do you have any other symptoms of that? Many of us that have been thought to have high cortisol levels - eveutually get low cortisol. My docs said that the adrenals will produce higher amounts until they can no longer do that and then things go low. I've heard of more POTS people using cortisol - rather than having high levels. Maybe, they have already gone from high to low ---if that is correct with what the docs have told me. There are many things that are in the "natural alternative" field that can help with this.

Do a search on the site for more info on MCAS. There is a lot of info on previous threads about that. It can appear similar to an adrenal surge when you have a mast cell degranulation. It's hard to tell if it's a NE release or mast cell.

Okay, will look for it.

Issie

KayJay, The brand is Udo from what you told me. There are a few from that company and I'm not sure which one you are talking about.

Issie

I do use probiotics. I've got to go get some more today, as I'm out. What is the brand you like?

Issie

All the clues eventually add up to a complete picture. Since this is a syndrome and so very complex ---there can be many things involved in the "Big Picture".

Naomi, my kidney doc has patients with "nutcracker". Interesting enough - none of them has dysautonomia.

Issie

Thanks Janet, Hoping something I've said over the years has made a difference for others. Is you Nephrologist here in AZ, Mayo? I saw one doc there - but, he didn't have many suggestions. I love the doc I have now - he's outside of Mayo. None of them has really addressed my having low renin and aldosterone. That doesn't seem to be very concerning to them. Just glad that things are going in the right direction. It is a good feeling to not have so many unanswered questions looming.

Issie

bump

Yes, there are many genetic connections in my family with dysautonomia.

Issie

FWIW- For What It's Worth

Ha!Ha! Of course, it's not some exotic, new catagory. Needed that chuckle.

Can you give us a preview of what they are thinking for the trilogy?

Issie

I think there is genetic connections. Much research thinking there is a connection to dopamine levels and that's the problem with Parkinson's.

Issues with sodium - seems to play a part with POTS and maybe the sodium channels - questions about that. Of course, there are many of us with abnormal kidney function and that has yet to be explained reasons. The extremes in blood pressure can be one explanation - but, what causes this in the first place?

Issie