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06/02/2012 03:45 PM

Questions about Protomyxzoa Rheumatica

blessedlady
Posts: 5
New Member

Dear Lyme Challenge people,

Having just joined the "MDJunction" website today, I am uncertain whether I'm going about this the right way. Lyme is the closest thing to Protomyxzoa Rheumatica (from my understanding), so forgive me for introducing a tangential subject into this forum.

My doctor just diagnosed me with this condition, and I have sooo many questions...like what antibiotics seem to be the most effective, and especially, what constitutes an "ultra lowfat" diet?? How much fat can be safely eliminated from one's diet? Is it best to have a fat-free diet for a few weeks, or...?

Forgive me for intruding into a not-quite-related group with these questions. My head is spinning, but it will be exciting too to figure out a course of action from here!

Thanks and God bless! =)

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06/06/2012 01:20 PM
lindy2
Posts: 7
New Member

My Lyme doctor believes I have this too. Were you tested at Fry Labs? I have heard a low fat diet is in order because this parasite lives on fat. My doctor also mentioned something about taking Doxycycline and Ivermectin together. I have not gotten to the point where I am actually treating this; my liver enzymes went up so I had to quit some of the Lyme and coinfection drugs I had been on temporarily. I really needed to take a rest from the intense abx. Also started taking Itraconazole and that may have increased liver enzymes. I stopped taking that and any other antifungals. So I've been off of Rifampin and other meds for about 1 month now.

Let me know what you have found out about Protomyxzoa Rheumatica too.

Lindy2


06/23/2012 05:57 AM
Yvetta
Posts: 1
New Member

Hello,

I myself been diagnosed with protomyxoa by Fry lab.I went to see him as well. My coctail of infections include Lyme, babesia, bartonella or babesia like organism and Filaria. Pretty bad. To this day I kept wondering. Fry was diagnosing in his lab for years and all the docs sent the samples for the smear. I was diagnosed by his lab fist by babesia then bartonella then it was changed to Haemobartonella and now is protomyzoa. It seems like that there is no sure answer since he is changing the names as the research goes on. Bartonella is Protomyzoa or other way around or have same like characteristics. The only new is adding Ivermectim which is used for Filaria treatment.

Yvetta


06/26/2012 07:25 PM
lindy2
Posts: 7
New Member

Yvetta,

From the lecture I listened to of Dr. Fry it sounded to me like all those organisms were not just a change of names, but different organisms. If you go back to see Dr. Fry could you get further clarification on that? Bartonella is a bacteria, not a protozoan parasite. I don't think Dr. Fry would have confused the two... anyway, I'd sure like more clarification too, but can't afford to fly to Arizona to see him.

I am absolutely sure I have this parasite. My doc talked a few months ago about putting me on Ivermectin, but it sounds like this parasite is not curable, so why do another medication since I've done so many long term meds for Lyme disease and co-infections. A change in diet to low fat would probably keep this parasite in check, but for me that is hard to do, at least not the McDougall diet which I've read is recommended. Almost NO fats at all in that diet. My brain would go nuts! Blessedlady, check out the McDougall diet... good websites on that.

I had read and heard that the McDougall diet is supposedly the best for this infection and to date this protozoan is not curable with any medication, although Ivermectin helps. This is what I have read and I sure hope it is not true. My LLMD tries to stay upbeat, and I am not great at following through with a lot of what she tells me to do or try.

Lindy2


07/05/2012 11:54 AM
swizle9
Posts: 1
New Member

lindy2, I have just been diagnosed with protomyxzoa rheumatica by Dr. Fry today. If you read his material he strongly recomends a high intake of vitamin D3, and you already heard about the McDougall diet... he also suggests raising body heat for some reason. the recomendation is a hot tub or a steam room or something like that. but it does suck in that he still says there is no cure.

08/15/2012 08:40 PM
Kateconn99
Kateconn99  
Posts: 12
New Member

I was diagnosed with Protomyxzoa Rheumatica as well after 9 months of inconclusive diagnoses other than adrenal exhaustion erc

How can this be non curable? I was led to believe that patients tke roughly 6 to 9 months to work through the protocol (ivermectin / doxycycline, mcdougall diet (which will be a huge struggle to comply with). But I haven't given up unless I really try it. I just started on the meds today

When I figure out the diet, I will let y'all know


08/16/2012 05:42 PM
blessedlady
Posts: 5
New Member

Aha! I finally figured out how to get back in to this discussion. Wink

Thank you all for your input. Kateconn99, like you, I'm trusting that this condition is curable, and therefore am launching on a course of treatment to try to knock the bug out. Started August 1, so it's two weeks along - so far so good!

My doctor did prescribe ivermectin to attack the protozoa, and meanwhile I found several different natural biofilm-attacking medications that I'm taking, each of which has an additional side benefit such as liver support or iron capture for the body. In addition, I'm trying to keep my fat intake to 5% of my daily calories. Fat is so calorie-dense, and so ubiquitous, that quite a bit of creativity is required to get a semblance of a well-rounded diet. I did find http://www.fatfree.com/cgi-bin/recipes.cgi - a treasury of fat-free or low-fat recipes (but you have to examine the ingredients carefully, because just because something's posted there doesn't mean it actually is fat-free), and am just thankful to live in a time and place where so much variety IS available. =) There are a lot of good options out there, you just have to be careful with the ingredients. Did you know that apples are 5% fat (with skin; fat-free without) or that tomatoes are 9% fat (again, with skin, and fat-free without)? Definitely calls all of one's cleverness to task, and as you probably all know, Protomyxzoa Rheumatica doesn't leave me much in that department.

Thanks again for all your input and thoughts. I'll let you know how it all turns out, and meanwhile, am thankful to have some guidance for this season of life. =)

By the way, Lindy2, the blood test WAS through Fry Labs: and I do hope you're able to recover to the point where your body will be able to handle what it needs to rid itself of this pest! Take good care!


08/16/2012 05:45 PM
Kateconn99
Kateconn99  
Posts: 12
New Member

Blessedlady,

Appropriate nickname! Thank you for guidance on the wierd diet.

I'm on ivermectin and doxcycline....but please expand on the herbs that you are trying.

I'm "all in" on knocking this out of my system so I would appreciate that guidance.

All the best,


08/16/2012 05:49 PM
Kateconn99
Kateconn99  
Posts: 12
New Member

One quick question re: the low fat diet while also avoiding:

magnesium, calcuim and wheat due to arginine amino acid - all of these are favorites of the protomyxzoa.

that's where the diet stumped me


08/17/2012 05:48 PM
blessedlady
Posts: 5
New Member

Dear Kateconn99,

The most remarkable thing happened to me last night, and God used you in part to bring it about!

You left with your questions regarding calcium, magnesium, and wheat – and I was tempted to be quite discouraged, because, as you no doubt might guess, I am integrating fat-free dairy products and low-fat whole-grain products into my diet to try to make sure some potential nutritional holes are being filled. Add to your comments the fact that I quite independently bonked my head rather soundly against a sharp edge some minutes after reading your post, and you'll see that what with contemplations and physical pain, I was in rather a funk.

No, I hadn't heard that the three items you mentioned are to be avoided in addition to fat. I'd just been operating on the best information I had, and when you mentioned the additional caveats, I thought, “And what if that's not all? This whole condition is a newly discovered bug, and they can't possibly know everything there is to know about it, and what if we DID cut out magnesium and calcium and wheat and fat, and there was still some other magic ingredient we were missing...?” and I suddenly realized how very little the medical community knows after all, and that ultimately, God is the One Who knows our bodies and grants healing.

So I whimpered out a rather plaintive, childish prayer: “God, it's very discouraging to consider all this, but I'm following the direction I've been given as best I can: and if You intend to heal me, would You please give me a sign by just ridding my body of pain right now?” And the amazing thing about it is that He did...and I fell asleep pain-free, woke up pain-free, and continue to experience no pain, and much more energy than I've had in a while! Praise Him!

So in answer to your question, I'm continuing with the planned regimen, because I feel confident God will work through it to bring about healing in these coming months. In further answer to your question, however, there truly are plenty of things to eat even excluding items you mention: lots of fruits and veggies, lots of ethnic items (and here one must be careful, because ethnic cooking *can* have quite a bit of oil: but a lot of the actual ingredients and spices are fat-free, wheat-free, etc. – take rice noodles as an example - and delicious to boot!), lots of non-peanut legumes (I happen to be allergic to beans, but most people likely aren't, which opens realms of possibilities), lots of light sweets. Wink Some of my favorite snacks include white popcorn (lower fat content than yellow) with nutritional yeast, rice cakes, etc. Oh, one more tricky thing about this whole fat-free diet thing: because fat is so calorie-dense, I find I have to constantly be forcing myself to eat to make sure I get enough calories for the day. There could be worse challenges to contend with. Wink

And in answer to the question regarding my specific biofilm attack plan, I got the following items off of http://www.drugs.com/mtm/ivermectin.html – MSM, Alpha Lipoic Acid, Berberine, Lactoferrin, Turmeric Curcumin, Neprinol, and Chlorella.

Again, I'll let you know how the year progresses...and again, thanks so much for your input and interest!

P.S. My doctor told me "3-6 months," where I note you've heard "6-9 months." Doubtless more evidence of the fact that so little is known about this bug. But here goes...we'll do our duty by humanity and add our experiences to the collective data from which others can learn. =)

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