I am a patient of Dr Stephen Fry, operator of Fry Labs in Scottsdale, AZ. The information I have is as I understood it by speaking with him directly. Much of what I believe is from assumption and is here to garner thought and opinions. Those assumptions are based on my living with this disease, and reading what I can find. I am not affiliated with any medical or research organization and what you read here should inspire your own discovery, but not lead you to believe that any of this is absolute knowledge.
First, a clarification. There are several Internet sources that refer to Fry Labs' FL1953 organism as protomyxozoa (note the O that follows the X). There is a fish parasite called myxozoa, and I assume this is the source of confusion. Myxozoa is a metazoa while protomyxzoa is a protozoa. The differences are vast. If you want to learn about eels then don't look up snakes. Please, Google responsibly.
Rheumatica refers to pain and swelling.
For the sake of this blog, protomyxzoa will also be labled as p-myxzoa.
The significant characteristics of protomyxzoa rheumatica:
Rather than a virus, or a bacteria which we think of when we consider illnesses, p-myxzoa is a protozoa, like an amoeba. It's classified as an animal, sometimes said as animal-like. It thrives in oxygen rich blood and thus enjoys surfing the circulatory system. You can deduce from this that p-mxzoa can go everywhere. It lives in small colonies surrounded by a biofilm. A biofilm is a protective layer p-myxzoa creates from our own body's fats and minerals. Our immune systems and antibiotics have a very difficult time penetrating the biofilm and thus p-myxzoa is very hard to kill.
P-myxzoa is a strong survivor with the ability to retreat into red blood cells and bone marrow where it hides from attacking autoimmune cells. As such it is mentioned as incurable. It is my belief from my own experience that this method of evasion can allow the host to feel completely healthy, perhaps for years, until p-myxzoa decides to emerge again.
I somehow got the notion it has a life cycle of about four weeks— lengthy for a microorganism. As it divides it becomes vulnerable.
It is capable of anchoring its protected colonies within blood vessels, perhaps at the mouth of smaller veins. The adverse effect of this is a reduction of oxygen to minor system areas due to blockage, and as I believe, also creates a competition for oxygen between the organism and body systems. It might further result in an increase in carbon dioxide levels; any animal that uses oxygen emits CO2. The body's reaction to increased CO2 is to constrict veins to reduce oxygen usage so CO2 levels will drop, further limiting oxygen to body systems. I believe it is this mechanism that causes all day tired fatigue, as well as an inherent restlessness.
Colonies are intended to grow. For this I assume there is a possibility of completely blocking a vein, cutting off oxygen to that body system but also to a good portion of the colony. When an organism is threatened it changes its operandi in favor of survival. An oxygen starved colony will break up due either to desperate flight of living organisms, or the rejection of dead organisms. This of course would restore blood flow to the endangered system. I believe this might be significant to a condition called transient ischemic attack or TIA, which appears as mini strokes. The condition is alleviated once the colony disperses.
Dr Fry has publicly stated that many of his patients with such diseases as Multiple Sclerosis, Alzheimer's, Lupus, Fibromyalgia, Autism, Attention Deficit, and more have tested positive for p-myxzoa, and he considers that my own ceiliac disease and hypothyroidism are also a direct result of the p-mxzoa infection.
P-myxzoa lives harmoniously with other protozoan organisms, as indicated by my positive tests for both protomxzoa and toxoplasma (gandii), but it is aggressive against bacteria and viruses. While my classmates were sick for days, I always got over cold and flu in a matter of hours...sick in the morning and playing happily in the afternoon. I suppose I can't blame my mother for thinking I just wanted to get out of school. To my recollection I have never had symptoms of a virus attack for an entire day.
Any organism must consume nourishment to sustain life. As yet, I am uncertain to the specific diet of p-myxzoa but it stands to reason that it would eat organic matter within body systems. I am certain p-myxzoa travels freely throughout the body, and as evident from my symptoms over the past ten years, it can even breach the blood-brain barrier, the body's natural firewall against inflammation of critical brain systems. This leads me to wonder if p-myxzoa is capable of consuming body tissue. Should it be, the list of illnesses it can cause is understandable, particularly with consideration to demyelinating diseases such as MS, Lupus, PLS and ALS.
A colony could interfere with nerve impulses in a number of ways including constriction and consumption. While this train of thought points more toward symptoms, which will be examined in a future entry, it is imperative to understand that a consuming, growing parasite that is without bounds can present an unending list of symptoms. It is another of my beliefs that favored vacation spots for p-myxzo is within preexisting and degenerative damage such as spinal compressions and fractures, making the effects of a minor condition more severe.
In breif:
- Protomyxzoa rheumatica is a protozoan parasite sometimes referred to as FL1953.
- Its existence is ancient, still it is largely unknown due to it's discovery being within the last twenty years.
- Although its DNA has now been mapped the CDC does not yet recognize it as a disease.
- Information is not readily available pending establishment of patents and credits.
- Detection is proprietary and 99% of doctors will have no clue to it's existence or where to go for testing. (Fry Labs, Scottsdale, AZ)
- Its symptoms are most often diagnosed as other illnesses.
- It is believed by some researchers that it will eventually prove to be one of the most common infections.
- It is a vector born parasite, meaning it can be passed by animal or insect, usually through direct contact with blood— most commonly, ticks and mosquitoes..
- Being a blood hosted organism, it is reasonable to assume that until it is widely known and tests are licensed that transfusion will be a source of infection.
- It may be dormant for years, making point of infection difficult to determine.
- It is difficult to treat and nearly impossible to eradicate.
- Treatment will take months or years to show results at which time it will be reduced but remain life long.
While all this seems overwhelming and horrifying, I believe in general, the body's natural defense system will not permit p-myxzoa to establish itself in most people. Proof of this is, while p-myxzoa is ancient, largely unknown, and easily transmittable, people continue to test negative for it. P-myxzoa is likely a co-infection depending on an already compromised immune system to flourish. My research into this parasite has suggested that those that have tested positive are usually also positive for other illnesses.
The ideas of 'incurable' and 'life long treatment' are daunting. But after getting p-myxzoa under control and symptoms subside, keeping it under control is a simple matter of an oral antibiotic once a week. Incurable means 'as yet incurable' and while it is a resourceful little bug, as we get stronger it gets weaker and in the chance that your body can kill those last few stragglers before they go underground, cured is a possibility even now.
Please continue to visit and comment as you see fit. Future blog entries will regard symptoms, treatments, diet, alternative treatments and more.
JJ
Hi JJ, terrific post and probably the most informative piece I've read on this parasite so far, well done. Can I ask if invermectin is your treatment along with low fat diet?
ReplyDeleteThanks for the comment Troyza. Ivermectin has not been prescribed to me. Dr Fry says treat p-myxzoa like malaria, so those are the sort of antibiotics he's tried. I'll go into more detail when I write the treatment post.
ReplyDeleteI'll be updating this blog as I am able. There is a long way to go with it. I hope you return occasionally to view the progress.
If you or anyone you know are suffering with this or other microbe inflammations you have my sympathy. You have to live with this to understand how it can wreck lives.
Best
JJ Walter July 28,2012...Have you now fully 100% Recovered with this treatment? 100% means no symptoms no exercise
Deleteintolerance no food issues no sleep problems waking up fully
refreshed & no Brain fog no balance issues? Leading a normal life no issues? 4/18/2016 thanks...
Thank you JJ for such useful information. I was just diagnosed with this along with Lyme two weeks ago. I've started antibiotics for the Lyme but will see about what steps to take for the P-myxzoa at my next appointment in a few weeks. I have read that a diet free of gluten and low in fats and sugar is the best. I was wondering if you have any information on diet. What to eat and what to avoid kind of thing. Also, I see you were going to mention symptoms. I have so many different symptoms but with having Lyme, I'm not sure what is causing each symptoms. My joints are horribly painful along with back and neck pain. Not sure if this is what you have experienced or not. How long after you started treatment did you start to feel relief? Thanks again for your time and information.
ReplyDeleteSusanne
Hi Suzanne,
DeleteYou must have stumbled into the archives, which don't scroll into the other posts. Everything I can possibly think of is here. Best thing is to start at the home page where you can scroll through everything in order of newest to oldest.
http://protomyxzoa.blogspot.com
I don't see where a gluten free diet is necessary to fight lyme/myxzoa but certainly a reduction in carbs will help. Wheat = carbs. Unused carbs = fat. I have celiac disease so cannot eat wheat because it triggers an autoimmune response. But whole wheat has much to offer when eaten in moderation. Gluten free was a hard diet for me to get used to. It might be unnecessary stress. Look for a scientific reason why gluten would affect a microbe infection.
Don't expect a fast and easy road to health. My three remissions each occurred over about a year, the last one relapsed in less than a week even though I was still treating. However, my diet will reduce my pain in only a few days after I've strayed. Try the lemon water and graze on raw veggies for a while and see if your pain lessens. They seem to have the most obvious affect. Stay away from sugars and excess carbs. Limiting fats is essential.
Whether you follow my diet or another, you need to eat to improve your immune system. Hoping for you the best of luck.
JJ
Hi- Diet is KEY!!!! I am currently being treated for Lyme Disease (positive via Western Blot), but I also tested positive for protomyxzoa rheumatica with significant amounts of biofilm through Fry Laboratory. If I limit my fat intake I do really really well. The moment that I eat high fat meats or oil (especially sausage or bacon, but even avacado and coconut oil), or something with sugar, within an hour, I feel awful. I know this is going to sound crazy, but I literally feel like my blood gets thicker. The veins in my hand and arms pop out, I lose circulation to my left toes, my left leg gets really weak, I can't go up on the toes of my left foot, it becomes more difficult to breath, and my abdomen gets bloated and warm to the touch. It doesn't make sense to me how I could have such a fast reaction. If it caused by the organism, it seems like it would take a little longer to wreak havoc. Since it doesn't make sense to me, and the paleo diet is being crammed down my throat (no pun intended) by my fellow scientists, I have tested this theory many times and it is for certain a truth for my body. I cannot eat high-fat food, even if it is good-for-you fats like coconut oil and olive oil. The frustrating thing for me is that I have no research to back me up on this. I really hope Dr. Fry is working on studying this organism in more detail and that the patent process speeds along so that we may get more information. That being said, if I am strict with my diet and eat only organic vegetables and fruit and lean protein, I can easily manage my symptoms (in combination with Plaquenil, Flagyl, and/or other antibiotics). Since you work closely with Dr. Fry, please keep us updated with any new information! Thank you!
ReplyDeleteHi , have you seen Dr Anne Corson protocol on line for PR?
ReplyDeleteDo you work with her? I did for awhile. There is a pdf out there outlining her protocol. Would love to talk to someone who treated/treats with her..
DeleteHi, I too am in the care of Dr. Fry for Protomyxzoa, and have been for 2 years. At first, treatment worked like a charm, within 3 weeks, I was less stiff and painful in the mornings. Over the summer, I religiously kept a book to track fat grams (less than 20 per day), and folic acid (which I have not seen mentioned here, but appears to also be vital to the organism for survival). After 4 to 5 months, I had lost at least 25 lbs and dropped my cholesterol down to close to 100 rather than the lifelong 230+. Perhaps high cholesterol is a predetermining factor for symptomatic disease... When I had to spend time with my parents, my diet suffered until I could get the right foods in the house, and when I ate too much fat, my symptoms flared, not immediately like Lyndsey finds, but the next day for sure. Usually I could fast for 24 hours and become right as rain. Over the last year, I have lost a lot of ground, with less and less response to food and antibiotic. At the same time, I have been discovering a longstanding infection in one area of my sinus, that has cultured out 2 strains of Pseudomonas, and one of Enterobacter. I have a wire from a surgery 30 years ago in that area that has migrated into the sinus and may be the nidus of infection, and/or it might also involve a tooth root that the wire is very close to. I believe that it is the reason that I am losing ground. Either the wire is colonized with the organism and in a very protected place seeding my blood, or the abscess is interfering with my immune system's ability to fight the protozoa. I am about to schedule a surgery to clean the area and remove the wire. Perhaps Dr. Fry can test the wire for it. If that doesn't do it, the tooth in front of it may be abscessed. I have heard from one naturopath that similar patients of his that did not get well as expected ultimately had an abscessed root canal tooth that had to be extracted before they got better. I know a personal example of this.
ReplyDeletevamp, what was the treatment you responded to so well in the beginning?
ReplyDeleteVery interesting JJ! I would love to know more. I'll do some research. I look forward to hearing more from you on the subject. I am currently fighting MS.
ReplyDeletehi, has tere been any new progress or treatment after sinus surgery?
ReplyDeleteThank you so much for this post!! very informative. I was diagnosed by Dr Fry in AZ too. I could not tolerate any antibiotics he gave me. I'm trying anti-microbial herbs & GSE, Serrapeptase etc, which i hope Fry Labs is researching too. I always feel better when taking serrapeptase. One Abtbx made me bed ridden with a back spasm (label said caution giving to patients with magnesium deficiency. I already tested low Mag on labwork by another Doc).. another Abx made me dizzy & scared driving. So i rebelled mentally & have been eating grain free paleo (because im supposed to eat paleo for Mold Biotixin Ilness with my Mold expert)... im conflicted what to eat. But i now have joint pain & feel 20 yrs older. I will try to go back eating Low Fat & only lean meat, if i eat meat. In past a vegan diet increased my depression & anxiety. brain needs fat. Trick will be finding MY balance. I 'd love to know what DIET is works for others, while living with protomyzoa rheumatica.
ReplyDeleteI also have been diagnosed with Protomyxzoa Rheumatica. My symptoms are mostly neurological...bad tinnitus and pressure in my brain. Does anyone have similar symptoms?
ReplyDelete