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

[issie]

I've decided to go ahead and post on what been up to and what new thing I've uncovered. This information is about Dr. Fry and a protozoa called Protomyxzoa Rheumatica (FL 1953).

First off I have to say that I’m just passing on information and am not sure that it will work out the way that I hope it will. But, it seems to have some merit and seems like something worth a try in this journey that I’m on. I have dropped a good many hints on the forum in the last month and have talked to a few people on PM’s and e-mails and given them a little more detail of what I’m thinking, researching and doing. It’s up to you to decide if this may or may not be a possibility for you. I’m not encouraging anyone to do this. But, this is what I intend to do and see if it makes a difference. I’m still a little skeptical and not completely convinced yet. But, think that I have enough evidence with my research that it could be a plausible explanation of some of my issues and possible an explanation for some of my POTS problems.

I found this doctor quite by accident. I went to a doctor’s appointment with a friend of mine who had in the past had Lyme disease and thought that maybe she had a chronic case of it. She has CFS and does not have POTS. In this appointment with her, the doctor found out that I had POTS and the attention turned to me ---instead of my friend. I was trying to not take up her time and told him I would make an appointment and come back to discuss it with him. He has treated other POTS people and was well aware of what we have, the dysfunction with blood flow issues and problems with the autonomic nervous system. When I walked out of there ---I had the feeling that I had found something of great significance. But, I had to be tested to see if what he thought was true. This doctor is a scientist and a doctor. He discovered a protozoa that can be gotten by a tick bite and/or a mosquito bite. It is called (FL 1953) Protomyxzoa. There are actually a few doctors working on these specific protozoa and trying to figure out how to tame it and what it does in the human body. This doctor is also considered one of the best Lyme disease doctors around and he checks for co-infections also. As regards to POTS and what he thinks is happening with us, this protozoa lives in the veins and is encased with a biofilm. Because of this biofilm, the immune system does not detect it and therefore it is not destroyed. This doctor thinks that our issues with blood flow are because there are too many of these protozoa in our veins and they are causing a flow issue. He also is of the opinion that this is what is causing issues with CCSVI. He is doing sonograms to check to see if this is an issue. But, the radiology group that does it – cannot send it to insurance – because insurance does not recognize this as a legit medical problem ----yet. So, you must pay out of pocket for this sonogram to see if there is CCSVI. He says that there is a group of doctors in CA that are doing surgery for this. There is usually immediate results. But, the improvement seems to only last for about 18 months and then things are back to being clogged up again. He thinks this protozoa is the problem.

Okay, let’s go back a minute to whether or not this could apply to POTS people. Do we have this protozoa and or Lyme or co-infections? I know of 2 people with POTS that are confirmed with this FL1953 protozoa. One girl is in Phoenix and has known she has had it for 5 years. The other is in the UK and has it too. And now, add me to the list. Not only do I have these protozoa but, I also have co-infection bacteria from a tick bite. We know the co-infection is from a tick bite and I know when I got it. The protozoa on the other hand could have been from a tick or a mosquito bite. I grew up in the South and had tons of mosquito bites in my life time. So, there are three that I know of with this and I know one other girl who is soon to be tested for it.

At this point, I’ll give you the name of the doctor. He is in Phoenix, AZ and his name is Dr. Stephen E. Fry, MD. Now, I don’t want you all running down here to be tested. This is still all very experimental in the possibility of it helping POTS. So, maybe the few of us that know we have this can be the guinea pigs on this. Also, the blood test and DNA test is not paid by insurance and is out of pocket and is not very cheap to test. But, I needed to know for sure that I had it or I would not have been able to commit to the treatment.

So, what is the treatment? Okay, here is where a lot of you are going to have some problems and is controversial. The main treatment for this is diet. He has found that fat feeds this organism and that magnesium makes the biofilm stronger. (I’ve talked before on magnesium and this doctors ideas about FMS being a disease of too much magnesium in the tissues.) I also saw a more recent paper that he is saying that he has found wheat to be causing issues. Not because of gluten intolerance but because of the arginine in it. Once you have this protozoa there is no way to totally get it out of your body and you can only control it. So, this is a lifetime commitment – not something that you do a few weeks or months and then go back to your old ways. So, what is the diet? It is a whole foods plant based vegan diet. No meat, no eggs, and no dairy and very little or no nuts (because of the fat content) and more recently limited wheat. This is very low fat diet and is not easy to do.

If anyone is familiar with Lyme disease treatment you know that the main treatments are low-dose antibiotics and antimalarial drugs. Same with this. That is the treatment in addition to the diet. I however, am taking a different approach and hope that it works. I’m doing the diet (this is my first week) and am also taking an herbal blend that is what antimalarial drugs are made from. If, I can stay strict enough on the diet and take the herbals, the hope is that I can control this and not only will my veins start functioning better – because they are not clogged with these protozoa – but, my immune system will probably recover and he has also had people reverse their kidney disease with this (I have Chronic Kidney Disease - more recently discovered). He also believes it will help with MCAS issues - as it has been shown to help with allergies. He advises that you do some sort of exercise, very gradually adding to it – on a daily basis. He also will check your vitamin D levels and B-12 levels. As these are two things that will probably need to be supplemented with a vegan diet.

What happens when these things start to die off? It’s called herxing and yes –I’m doing it. I feel awful and hurt really bad. But, that just tells me the diet is working. My friend, the one that I found this doctor through ---has been on the diet for 2 months now. She is a different person. She used to have to take hours of naps a day ---she doesn’t any more. She can stay up and moving most days. There are good days and bad days. But, she looks like a different person. She is doing antibiotics and the diet. If I don’t do the diet strict enough, then, I will have to go on the low-dose antibiotics and antimalarial drugs too.

Because, right now I can’t do the test for CCSVI – we are just going to see if the diet and herbs make me feel better and if not ---then we will push for the test and he said then if the meds don’t work for the CCSVI completely – he will send me to the doctors in CA. But, he is of the opinion that this will work. Since, we are treading new waters ---time will tell.

The diet that is recommended is Dr. McDougal. There are books on the net by him. I’ve done a lot of research on the diet. It seems that many people are doing this diet for some serious and severe health issues. Cancer, diabetes, allergies and autoimmune issues and autoimmune diseases – being some of them. Some people that doctors have given up on have done this diet and regained their health. There are body builders on this ---and they look great. There is an ex-fireman promoting this diet. I’ve seen many, many videos on the healthiness of this and the promoting of it vs. the diets with meat, dairy etc. I know one of the first things recommended for autoimmune disorders is to completely cut out dairy. I’m not saying this diet will be easy to do. It will be a complete lifestyle change for me. But, I’m willing to give it a go and see if I can stick with it. I’m determined to do this “experiment” and see if I can tell a difference.

I don’t know if I’m off on something that will not prove to be successful or not. But, since I’ve gotten two labs saying there are two types of organisms that should not be there. Working on controlling them could not hurt. I actually, had many more then my friend. We compared our pictures. She said she knew how bad she felt and could not imagine how I must feel with so many. She also, doesn’t have POTS. So, we will see what time brings. Hoping that this trail is going to lead to more quality of life and maybe I will regain some of my health.

What if this doctor is right and our vein issues and blood flow problems can be attributed to these protozoa? What if diet is what will help us to function better? Wouldn’t we nearly do anything to have our lives back? I’ll keep you posted.

I was going to wait until after the first of the year to post. Because then I’d have more of an idea what to tell you as for the diet and how I felt. I'm hoping that by the first of the year – I can give a good report. There are many asking me questions and I’d like to have some discussion on this from all of you. I don’t know if this is the answer. But, I’m going to find out.

Here is a link to a summary of an interview that was done with Dr. Fry. Within this summary, is a link, to the full interview and what this doctor has discovered and what he feels may be the issue with some problems like MS, CCSVI and he is also thinking that POTS may be connected. http://www.forumforpages.com/facebook/ccsvi-in-new=zealand/hiding-in-plain-sight-the-stealth-disease-protozoan-pathogen/3561941001/0

Issie

EDIT 2016 - I found that I am getting calcification in soft tissues. Research shows two things that could cause this. One is not using Vit K with Vit D. It helps keep the calcium in the bone. The other is lack of magnesium which moderates calcium. More current research on Lyme shows that yes biofilm does use magnesium to get stronger. But it also uses calcium and iron. Another Lyme doc I recently read about feels calcium is more an issue than magnesium. So knowing that my body is showing signs of a magnesium deficiency and too much calcium - I'm using transdermal magnesium spray a few times a week. Can't say that I feel any different, but maybe it's helping to get calcium more in balance. Also, added Vit K to my supplements. Another interesting note is Vit D can be low in your body to try to adjust too high calcium. If your calcium is high, likely Vit D will be low. It's a self regulating thing. I stopped mega dosing Vit D, it just wasn't coming up with more and now I think I know why. 

EDIT 2017:  Dr. FRY went into research only. He no longer sees patients. He has now decided that what he had felt was a protozoa is a mold/fungus. It does still form biofilm. He is addressing it more with antifungals.

I've gone down a different path with a Shoemaker/Klinghardt trained doctor. There is a lot of testing that can be done for mold/fungus. And there can be genetic markers that will make one unable to throw this off.  I'm positive on all testing done, so far. My new doc is Dr Jennifer Smith in Scottsdale, Az.  If you see her tell her I recommended her.  She is fabulous! 

 

Issie

Edited July 25, 2017 by issie
update of info

[puppylove]

Wow. This is so interesting! I really hope this helps you- can't wait to hear how it goes!

[cma]

Hi Issie,

This sounds amazing! It's so exciting that you've found a doctor, who actually listens and is able to think outside the box.

I was just wondering, were you diagnosed with Lyme disease? I had a rash about 5 years ago, which looked similar to Lyme rash, but at the time I knew nothing about that and a few months after all of my health problems had started. I recently had a test for Lyme disease, which was negative, but from everything I've read, if it's in a chronic stage only Lyme literate doctor would be able to diagnose it correctly. My test was done by my GP.

Do you think you'll need antibiotics later on or are you choosing a more natural route? Would you mind saying which herbs are you using?

[brethor9]

Bless you Issie for being the guinea pig I do so hope you see results with it.....interesting enough Lyme Disease was one of the first things my internist tested me for but all came back negative but even he said the tests aren't very good .....at this point I am willing to try anything....the MCAS protocol is helping but only by a little so far.....diet is also my next step.....what is there left to lose? Please keep me posted on how you are doing

Bren

[hholmes13]

Really interesting stuff, Issie! Good luck to you. I really hope these changes help you start to regain your health.

[Foggy01]

Wow sounds like a very scary thing. Protozoa clogging veins. God hope they're right about it just being the deconditioning for me.

[Christy_D]

Wow, Issie. Very interesting stuff. My son has had many tick bites in the past and mosquitos for that matter. Definitely keep us all posted.

Christy

[Kellysavedbygrace]

I've been looking forward to this post that you've been alluding to. Very interesting. Yes, please keep us all posted.

[Angela]

I havn't tested positive (getting the test in early January due to $) so I cannot say that I have the FL1953 but wanted to throw in Dr. Fry recommended to me if I test + and go on the diet/antibiotic to stop magnesium supplements, he thinks that the protozoa feeds on magnesium, which could explain why my labs say I am magnesium deficient although I take over the usual amount of magnesium supplements...? He said that the diet and shrinking the bugs will bring your vitamin levels into balance. Also, when I mentioned how H1 and H2's were helping he believed it has to do with controlling inflamation cuz the protozoa causes inflamation. I've seen some posts on loose teeth - sign of parasites. also seen posts about back of kneck pain/clicking...possibly due to CCSVI i'm hypothosising. I have read that approximately 90% of those with MS have this bug, plus the big parasite guru's out there believe there is a connection to autism, and not to mention other sorts of dysautonomia, not necessarily pots. My thought on the diet is that whether or not I find I have this bug, I will do the diet regardless. Studies show that after a ms diagnosis, when following this diet after 30 years later your quality of life and life expectancy is 100% compared to those who don't. My boyfriend's exes mom is an example....she was dx'd with ms over 30 years ago and has followed a lowfat vegan diet. Her neuro said he has never had a patient survive as long as she.

Yay Issie, glad you posted.

[Angela]

also read that parasites cause air hunger which many of us have - the sensation of forgetting how to breath/not enough oxygen to the brain

[Katybug]

Issie,

I have long thought that I have chronic Lyme and that it has something to do with all of this. I've always had hypermobile joints (and probably EDS) but it never affected my health until 2007 when I tested positive for babesia, a Lyme co-infection.

I will not be surprised to find that this works. I felt so much better when I was on antibiotics. I so hope it does make you feel well again. It will be great for you and give hope to the rest of us!

[cmreber]

Very interesting! Issie, do you happen to know if the "type" of POTS matters in his theory?

[issie]

I don't think he is looking at our sub-types.

As for whether or not I'll need the antibiotics and/or antimalarial drugs ----we will see. I tend to try to go more natural routes of treatment. I know things to take that act very similar to both of these things. So, that's what I'm supporting myself with. The doc. knows what I'm doing and is okay with my trial. I'm to go back in a month and we will see if I need to add anything else then. The key is a very low fat diet (no more then 20 g. a day). I keep up with my foods on a web site that gives you the carbs., protein, fat and vitamin content of what you eat for the day. Even vegetables has fat in them. So, it doesn't take much and you get to your fat max very fast. The program is called SparkPeople. He has found if you go above this level, then anything above this, the protozoa thrive.

Issie

[issie]

I was just reading over some of the data that I've collected in regards to my 23&me test and Methylation Pathways. I'm very deficient in BH4. On the Heartfixer website it comments that if this is the issue then a deficiency in BH4 allows NOS to convert Arginine into free radicals as opposed to nitric oxide, predisposing you to hypertension and cardio disease causing an increase in angiotensin II and making the enzyme not function at full potential.

So, instead of getting the NO that I need it turns into free radicals. This is interesting in relationship to Dr. Fry figuring out that arginine is an issue with this protozoa and us having issues with wheat because of the gluten. I had figured out the hard way, that I need more NO. So, it does seem that some more of the puzzle pieces I'm collecting are starting to make more sense.

Issie

[jkoconne]

Issie, What are you doing to increase NO? How do you know you need this?

Oh I met with Dr. Goodman today and my mom wanted so much to bring this up but I had so many other questions I decided to save it for an other...a time when my pots is more managed.

[issie]

Ha! Maybe good that you didn't bring it up to Dr G.---YET. Not sure what he'd think about this "Out of the Box" idea. But, maybe when we have been on the diet a little longer and either the herbs or antibiotics and/or antimalarial drugs and we know if it helping our POTS or not ---he might be more receptive to the idea.

As for knowing I need more NO. I can not take anything that vasoconstricts my peripheral limbs on the inside. Things that dilate seem to help me more. Also, I had a rather expensive ER visit when mast cells attacked my heart. The treatment was IV's, massive antihistamines and nitroglycerin (this ups NO). The things that I've done on a more natural basis - that increase my NO --seems to make me feel better. I'm HyperPOTS and not a fainter. I think it's good to know which subset you fall into --because that can help you know more which treatment may help you the most.

Did you find out anything new from Dr. G? Any new game plan?

Issie

[ramakentesh]

Ha! Maybe good that you didn't bring it up to Dr G.---YET. Not sure what he'd think about this "Out of the Box" idea

I can make a pretty good guess.

While it may be good to know your subset, until there are ways to determine this as a matter of course and there is research consensus on the subsets its not yet clear whether its that relevant. As an example you are hyper but have EDS which would suggest that you are not hyper if you get me.

[Angela]

on this topic there is some really interesting info on febs.org

[issie]

As an example you are hyper but have EDS which would suggest that you are not hyper if you get me.

No ---not getting you. Explain please! I have High NE levels with standing and Mayo put me in the HyperPOTS with MCAS and EDS catagory.

Issie

[issie]

on this topic there is some really interesting info on febs.org

Angela,

Can you give a link to show which info you'd like us to read on this?

Issie

[issie]

As an example you are hyper but have EDS which would suggest that you are not hyper if you get me.

No ---not getting you. Explain please! I have High NE levels with standing and Mayo put me in the HyperPOTS with MCAS and EDS catagory.

Issie

And high NE vasoconstricts the veins - peripherially, according to what I've read.

Issie

[ramakentesh]

As an example you are hyper but have EDS which would suggest that you are not hyper if you get me.

No ---not getting you. Explain please! I have High NE levels with standing and Mayo put me in the HyperPOTS with MCAS and EDS catagory.

Issie

POTS in EDS is described as being caused by impaired venous constriction because the venous material is overly stretchy. Therefore there is a defect in the venous vasoconstrictive apparatus. And while EDS patients have beta 1 receptor hypersensitivity which can cause symptoms of sympathetic excess, the increased sympathetic drive and norepinephrine levels in POTS EDS are an appropriate response to impaired venous pooling. However the rest of the body does not need excess sympathetic drive/NE levels to operate and is sensitised to these excessive levels (used in an attempt to increase venous return).

The hyped up symptoms in POTS are often actually caused by the epinephrine response to impaired cerebral perfusion. This happens when a hypertensive patient is given too much medication to control their hypertension and become hypotensive, with adrenalin surges and feelings of jitteriness, coldness and anxiety.

Sure NE vasoconstricts. But EDS isnt a vasoconstrictive state, its a state of poor venous vasoconstriction.

Actual standing levels of NE arent really that diagnostic because elevated NE and orthostatic blood pressure can and often does also occur in neuropathic POTS which again is not a hyperadrenergic state.

The only way to correctly identify a HYPER POTS patients - that is one with increased sympathetic drive as the primary problem - would probably be to examine MSNA - nerve firing rates to determine excessive MSNA. This only occurs in Low Flow (ang II) POTS and NET defiency.

[ramakentesh]

As for your diagnosis of MCAD - I will be careful because previous posts were edited on this topic. But its unclear whether this is a causal factor in a type of POTS or is an epiphenonema in many POTS patients.

Dr Grubb suggests MCAD in POTS is very rare. Other doctors have failed to identify MCAD in any of their patients. Vanderbilt who first described the disorder in POTS suggested half of their hyper patients had this condition - which results in profound episodes of hypotension and fainting.

Dr Afrin's work contradicts the findings of most of the other researchers. He suggests MCAD is very widespread in POTS. However Mayo as an example would definately dispute this suggestion.

[Angela]

anyway, maybe already posted or aluded to in some sense but still being examined with importance:

http://onlinelibrary.wiley.com/doi/10.1046/j.1420-9101.2002.00402.x/pdf

I hope I cut/paste the right post having problems with that lately, need a better laptop ya know?!

I def think inflamation is a common thing in autoimmune issues. MCAD is very hard to dx as well, according to Dr. Grubb & my neuro and much else I've researched. I don't faint. (remember, less than 10% do according to statistics I've read....can't find the published medical research papers on that right now LOL)

Dx'd with hyerpots, the only thing that has really helped manage my symtoms is minor dose of benzo in the AM (not pm) and anti-inflam's.

and btw, there is nothing wrong with my "flow" according to my neuro & ex physiocard (who told me to wiggle my feet at my desk at work (seriously?) and eat lots of salt/drink gatorade). If I have bouts of high bp so idk why eat more salt.

even wiki said

Immune system - Wikipedia, the free encyclopedia

en.wikipedia.org/wiki/Immune_system

Inflammation is one of the first responses of the immune system to infection

The Biochemical Society (UK)

Nutrient mechanisms in inflammation, infection and immunity

24 January 2013

Charles Darwin House, London, UK

This Hot Topic (yeah, don't get excited cause they said "hot") meeting will provide an opportunity for researchers interested in exciting emerging topics in nutritional immunology to come together and to establish a network for future collaborations in this fascinating area of research.

Topics: Vitamin E, T-cell function and infection; Vitamin D, immunity and infection; Flavonoids, genotype and inflammation; Obesity and infection; Omega 3 and omega 6 fatty acids and inflammation; Lipid mediators in inflammation resolution

www.biochemistry.org/MeetingNo/HT005/view/Conference/

sorry, off a exact important topic for a minute, should have gone to the salt post but stil like I said, inflamation has EVERYTHING to do with this i propose; at least in hyperpots case. There is a cause for pots and autoimmune. No offense anyone - am I going to get edited? sorry, my computer doesn't do smiley faces at home:)

[ramakentesh]

Sure thing - inflammation can be present:

Increased ROS activity

Cytokine mediated small fibre neuropathy is suspected

Research has even raised the possibility of cytokine-mediated NET gene expression.