Interview - Could This Be One Piece Of Our Puzzle

[issie]

Here is an interview by my doctor that describes what he has found and why he feels it may be an answer to people who may have many hard to treat neurological problems. I've been following the protocol for about 7 months now. I'm not well, but have had some great improvements. The hard thing about the discovery, however, is how hard it is to tame. Once you have this organism, it is thought that you can never totally eradicate it. It is something that would require lifestyle change to keep under control. But, if like I suspect, there are genetic weakness that may hinder the immune system from recognizing pathogens, virus etc and they live in these biofilms. Getting the immune system to work better and breaking down these biofilms will help it recognize the things it should. I'm expecting to give an update later this year with some more, new, information. But, for now, consider this as a possibility, and maybe a piece of the puzzle.

http://protomyxzoa.org/wp-content/uploads/2013/04/Protozoal-Infection-Dr-Frye-Interview.pdf

Issie

[LMG]

Issie,

That was fascinating and ties in with many treatments friends of mine with MS, CFS, Fibro are doing. Most of them are on minocycline or zithromax and see improvement. One has said baby aspirin. Does Dr. Fry suggest that ever?

Also, is there a link to the specific diet or is it general- just low fat, low sugar, etc?

Thanks again!

[futurehope]

Thanks so much for again referencing this microorganism. Fascinating. I, for one, have been on a self-imposed extremely low fat diet for two months because I know I feel better without fats. I don't know why, but it is obvious to me anyway. I have chronic inflammation in my body and plaque building in my arteries and I do not want to encourage the growth. Therefore, I am following an extremely low fat diet. I first got my idea from a Dr. Esselstyn, a cardiologist.

Anyhow, keep us informed of your progress, okay? Have you ever tried the antibiotics with this problem?

[issie]

Yes, I'm on low dose doxycycline and antimalarial herbs that rotate. Also, using lumbrokinase to break down biofilms (some also use natokinase or serrapeptase, but lubrokinase is more potent) so the antibiotic meds and herbals can do their job.

The diet that is recommended is Dr. McDougall's diet. He has books out and also you can find him online. You can get some good information from Forks over Knives and Engine 2 diet sites. There is a lot of information on the net about why low fat is so good for you. The more I research it, the more convinced I am to stick it out. It's not hard being vegan ---what is hard is being low fat.

As for aspirin, I never asked about that. I'm not able to take it because for me, it triggers a mast cell release. Some mast cell people do however use aspirin to try to cause a slow, steady release rather than a massive dump that can happen. But, that slow release is too much for me. So, I don't use aspirin. I do however use herbals to thin my blood - the two I like the most and they also help with pain is ginger and turmeric.

Issie

[TCP]

This is very interesting and thanks for posting it. I'm sure a lot of my friends with ME/CFS will find this interesting reading. I am on a low fat, low carbs, gluten-free diet, basically vegan and currently on a juice diet which is really healthy for me. I'm losing some weight which is great!

Good luck!

[bellgirl]

This is very interesting Issie...Thanks for sharing.

[Guest Hanice]

I dont recommend the vegan diet.. I was on it for four years begore I got pots and I spoke with a holistic doctor that told me I probaby got pots from being so deficient on B vitamins from meat and cheese. As soon as he told me this I started eating meat and cheese. I havent felt better yet but he tild me it would probably be a while before I did. I just started the gluten free diet. Im willing to try anything natural. I dont take any meds. I love herbs like Valerian though.

[issie]

Hanice, sorry you didn't find being vegan a good fit for you. You really have to pay close attention to your nutrition. I keep up with what I eat in a program called SparkPeople and it tells me the nutrition factor of what I've eaten for the day. If I get too low in something I can correct it the next day. Not all vegans eat healthy. It is important to make sure that you get the nutrition and vegetable protein necessary for a healthy body. Since I've been doing this I've found that my nutrition has greatly improved from when I ate whatever. I'm actually getting more vitamins than I was before and my health has improved considerably. The key to this diet is low fat ---animal products are not low fat. Most vegans don't eat low fat either. So, it's a challenge to do this diet properly. But, for me --it has been one of the best things I've EVER done for myself. One thing that you must supplement with this diet is B12 and Iron. Those things cannot be gotten with a vegan diet. So, he tells us to supplement those things and iodine and Vit D.

Issie

[Guest Hanice]

Their IS healthy alternatives to being an omnivor!!!! Their is LEAN ground turkey breast which is 99% fat free! Their is always Chobani non fat greek yogurt and lean beef and fat free or low fat cheese. Being healthy as a vegan is hard because you could be eating what you aThink is is really healthy and you could be hurting yourself. Some essential B vitamins and amino acids ONLY come from meat and cheese....

[issie]

With me, having autoimmune issues involved in my picture ---one of the first things that is eliminated is Dairy. That is a given - so much research shows that dairy contributes to autoimmune problems. For those that have come off dairy, many of their autoimmune issues come into check.

There is a big debate between vegans and those that eat meat as to whether or not animal products is advisable. I'll leave that up to others that are more versed in the science to discuss that. I'm not here to initiate a debate as to whether someone should or should not be a vegan. But, for me - with my doctors encouragement and lots of research on my part ---it is making a difference and things are greatly improving. I have even reversed kidney damage from Chronic Kidney Disease ---all with this diet. I went from Stage 3 to almost into Stage 1. This is unheard of --most think when there is damage ---it can't be reversed. I'm one of 4 of my doctors patients that this diet has done this for. It's not something that one goes mindlessly into. It takes a lot of research and making sure that you are doing it healthy. It's not something you make your mind up to do one day and eat Corn Chips and Salsa and Drink a Coke ---that would be vegan --but, not healthy. You have to make sure that you get enough beans, peas and lentils and that will give you B vitamins. I'm well aware of nutrition and alternative treatments. I could write you a book on what things are and what they are good for. But, this is a whole new approach - in trying to get your nutrition from food and NOT supplements. I have lowered the amount of supplements that I take down to only a few times a week vs. daily. I'm for sure having better labs and more happier and healthier days --than I've ever had.

I was just recently introduced to another person who has MCAS and her approach is with diet and not antihistamines or medicines. I'm just learning about her findings, and find it fascinating. Diet plays a key role in the function of our bodies and can affect inflammatory cytokines and inflammation. What we put into our bodies makes a huge difference and it is the one thing we have control over that we can change for ourselves.

Issie

[spinner]

This has been brought to the forum before. As i recall there was a doc in california or arizona treating it successfully.

[issie]

Yes, things are looking up and yes it has been brought to the forum by me and a few others that are being seen by this doctor. Just thought it had gotten too long - now on it's 14th page. LOL! Not sure everyone would want to read through all of it. But, lots of good info there if you want to read for awhile.

http://forums.dinet.org/index.php?/topic/22047-new-doctor-new-ideas-could-this-be-the-answer-or-at-least-a-part-of-our-puzzle/

The doctor is in Arizona.

Issie

[Psalm 23]

Hi Issie,

Thank you so much for resurrecting this interview. The information presented is quite compelling and certainly gives one much to think about. I need to read over it again to better process it. At this point I have been unknowingly doing some of what is recommended for protozoa treatment. Particularly with regard to a low fat diet recommendation that is the only kind of diet I can tolerate without getting deathly ill. I look forward to new information up coming. I'm so glad you are still seeing some positive improvements with the course you are on.

Janet

t

[futurehope]

Issie,

Do you feel that having the protomyxzoa rheumatica causes you to have MCAS? IOW, can the MCAS be the result of your body always in the mode of fighting this microorganism (the protozoa)? Or, do you view MCAS and Protomyxzoa rheumatica as two different problems that are unrelated?

[Guest Alex]

Always happy to hear you're improving Issie.

Also thanks for sharing the interview. Thought provoking to say the least.

Alex

[issie]

Issie,

Do you feel that having the protomyxzoa rheumatica causes you to have MCAS? IOW, can the MCAS be the result of your body always in the mode of fighting this microorganism (the protozoa)? Or, do you view MCAS and Protomyxzoa rheumatica as two different problems that are unrelated?

All really good questions. I'm not sure what the answers are however. I think it has to be a player in the combination of all of it. I'm even going to go out on a limb and say that with the Hypermobile form of EDS - this protozoa could be a player in that too. It's the only form of EDS that can not be tested with genetics. I have no proof or research to back that statement up ---just something that I wonder about. I really think that there is a connection with all of it ---including POTS. But, time will tell what difference we may see. You have to go really slow in breaking down the biofilms as when they release from the vein walls - if too much is released at once - there is a potential problem for blood clots. So, this is something that will take time to see the full results. With my POTS, I can stand longer and do more. I still have POTS, but things are better. And, I have less problems with things coming out of joint with my EDS and less pain. My edema is rarely seen these days and there are some days that I show neither a heart rate or blood pressure reading to indicate POTS. I still have the herx reactions and when I'm in one of those ---everything is bad. But, that comes in cycles and for the most part ---things are greatly improving.

Issie

[futurehope]

Issie,

Thanks for responding.

I have some more questions. Are you seeing Dr. Fry regularly? Do you live near Scottsdale, AZ? Is he accepting new patients?

I thought I would give his practice a call today. I am so tired of being sick and tired. My mast cell meds are causing me more problems instead of helping me, so I'm discouraged. IOW, the mast cell protocols I've followed have been no help so far. Therefore, I am now becoming interested in Dr. Fry and his ideas.

Does his office and lab accept insurance? I am assuming that the testing for the protomyxzoa rheumatica would not be covered by insurance because the medical community does not know of this organism yet, right?

[issie]

Dr. Fry does see new patients - but, works in the office only a few days a week the other days he devotes to research. He does take most all insurance and it depends on your insurance as to whether or not they pay for the test. They have had a few people's insurance pay for it - but, require you pre-pay and be reimbursed and you need to submit the papers for the lab test for the protozoa yourself. He uses Quest or Labcorp for all his other testing and insurance pays for that. I do see him regularly - about every 2 months. He keeps a close check on you with labs and symptoms. He makes sure that you are staying healthy and addresses whatever problems you are having. If you plan to see him ----you must commit to the diet. He really thinks that is the key to our health. He will still try to help you, if you don't do the diet ---but, it sort of hinders whatever progress you will get ---if you don't commit. With me, I wanted to know for positive sure that I had this protozoa in order to make the commitment. I wanted to have a good reason for the change. I had a significant amount of the protozoa and also Ehrlichia which is a co-infection that goes along with Lyme disease.

Here's some symptoms associated with Ehrlichia and the article I copied it from:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC145301/

Multisystem involvement often develops in patients with severe disease and may include acute renal failure, metabolic acidosis, respiratory failure, profound hypotension, disseminated intravascular coagulopathy, hepatic failure, adrenal insufficiency, and myocardial dysfunction

Approximately 20% of persons infected with E. chaffeensis develop signs and symptoms of central nervous system disease (99, 105). Neurologic findings may suggest a meningitis syndrome (meningismus, photophobia, severe headache, lethargy, confusion, or cranial nerve palsies), or an encephalitis or encephalopathy syndrome (delirium, obtundation, coma, seizures, hyperreflexia, clonus, broad-based gait, or ataxia) (72, 222). Cognitive impairment is the most predictive indicator of abnormalities

Long-term sequelae of central nervous system infections are not well documented; however, persistence of various symptoms, including headache and photophobia (32), facial or ocular palsies (50, 99), tremors (16), diminished memory (138) and confusion (222), for one to several weeks has been reported. Impairment of cognitive performance has been described for some pediatric patients following HME (139).

Cough or other respiratory symptoms are described in 20 to 25% of all patients with HME (105, 204); however, pulmonary manifestations, including interstitial pneumonitis (16, 59, 138), pleural effusions (109, 173, 243), pulmonary edema (109, 277), and acute respiratory distress syndrome (155, 211, 213, 215, 246, 271), are frequent components of severe disease.

Secondary infections, including those caused by cytomegalovirus, Candida, and Aspergillus spp., have occurred in some severely ill patients (92, 104) suggesting that infection with E. chaffeensis may induce suppression of the host immune system (275). The occurrence of pathogen-mediated immune dysfunction has also been proposed for animals and patients infected with A. phagocytophila

The usual symptom complex of fever, headache, myalgia, and malaise, coupled with thrombocytopenia, leukopenia, and elevated hepatic transaminase levels, are features shared by HME, HGE, and E. ewingii ehrlichiosis. However, some differences in the frequencies of disease manifestations exist between HME and the other forms of human ehrlichiosis. Rash, central nervous system involvement, and gastrointestinal disturbances are reported more often for patients with HME than for patients with HGE

_______________________________

This is enough info to let you see it could cause some of our symptoms. This is just one organism and there are many that could be co-infections associated with Lyme disease. I asked the doctor, when we talk about Lyme disease vs. Protomyxzoa rheumatica what are we talking about. His example was ---See that plug in over there if you look at the size of the prong spaces and say that's Lyme - then the magnitude of this Protomyxzoa protozoa would be the size of the whole room. So, if one co-infection can have all those symptoms associated with it and this protozoa is more complex, more invasive of the body ---what kind of effects can that have on our body. I know I have these things. Labcorp found the co-infection and I have DNA proof of the protomyxzoa rheumatica and pictures of it. I'm getting better ---what else can I say. It has to be playing a part in everything.

Issie

[davecom]

Thank you for sharing, Issie. It is a very interesting article. I believe the protocol he prescribes is helping a lot of people. On the other hand, I of course read the interview with a fair bit of skepticism - he is making a very very big claim. I would think it would be more well known by now... but then again I am also skeptical of the medical and media establishment. So, I am unsure what to think. I hope his clinical trial gets approved and more data is published.

[issie]

He is supposed to be published this year. I'll post it when it comes out.

I'm one that tries to look at things with caution too and from all the research I've done - I think this is viable. Well, for sure I know I have the organisms. And I'm getting better with what I'm doing. So, it's like - if something looks a certain way, walks a certain way and proves out a certain way ---it must be that certain way. I'm one that enjoys the technical, detailed science of it all ---so, I'm looking forward to the data and research coming out too.

Issie

[Suthrngal]

Issie, so glad you're feeling better. So which tests exactly did Dr Fry do? Lyme confections? I'm having a hard time focusing on all the info. How are you treating?

Is Dr Fry at MAYO?

Thx.

[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

[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

[looneymom]

Issie

I'm trying to find your longer post. Can you send me the link?

[issie]

http://forums.dinet.org/index.php?/topic/26246-long-awaited-article-the-best-thing-now-seldom-have-severe-pots-or-mcas/

I posted a new thread with published paper from Dr. Fry