anyone know of protomyxzoa - FL1953?

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LupnerRN
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Date Joined Sep 2008
Total Posts : 350
   Posted 2/8/2012 6:21 PM (GMT -6)   
My LLMD is having me tested for protomyxzoa from Frylabs.com.

Apparently this is a new parasite found that many Lyme patients have.
My LLMD has 10 Lyme patients, including myself, not responding to or plateaued on all meds. Three of the ten have been tested for protomyxzoa and are positive. They've been started on Stramectal/Ivermectin (spl?)

I haven't found much info on this. Anyone know of this or being treated for it?

twinkl1999
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Date Joined Sep 2011
Total Posts : 211
   Posted 2/8/2012 7:38 PM (GMT -6)   
I have tested positive for it and am treating for it with plaquenil. I know of a couple of practitioners that treat for it. I recently read an article with an interview with dr. Fry. I will try to find it and post it.

twinkl1999
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Date Joined Sep 2011
Total Posts : 211
   Posted 2/9/2012 7:59 AM (GMT -6)   
http://www.iadvocatehealth.org/protozoal_infection0.aspx

The link is above. Note that dr. Fry believes this is a very common infection and that most people with Lyme also have it. But I'm can't remember if he discusses Lyme directly in this article. He believes it affects those with CFS and fibro as well.

Summer3
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Date Joined Nov 2011
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   Posted 2/9/2012 8:17 AM (GMT -6)   
I just started looking into this too. I read somewhere that co-infection in Lyme patients was over 90%. This will be interesting to watch as it emerges. I think the test runs about $265.

Carrie48
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Date Joined Mar 2010
Total Posts : 638
   Posted 2/9/2012 9:57 AM (GMT -6)   
Lupner: It's so funny that you mentioned this. I have a sticky note on my computer to remind myself that I want to talk to my LLMD about being tested for this on my next appt! ha ha I saw a video about a couple (it was on the Calda website and came thru my facebook page). She was a very ill woman who wasn't responding to any treatments and then was tested for this, started treatment and got her life back!
DX with Lyme and Erlichosis in January 2010. January-August: Biaxin and Amoxicillian. September 2011 - ? on Rifampin and Zithromax. Symtpoms mostly neuro and have 20 small lesions on brain.

Zeusy
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Total Posts : 237
   Posted 2/9/2012 1:59 PM (GMT -6)   
The LLMD I see believes that while FL1953 IS very common, most people can fight it off on their own, or have no symptoms. So he doesn't test for it or treat it except for special circumstances. I think his reasoning is that there are lots of infections/viruses out there that people who are 100% healthy have with no symptoms, and so if you can get rid of LYme and get your immune system working again, you should be able to fight it off yourself

yazzer
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Date Joined Jun 2011
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   Posted 2/9/2012 2:30 PM (GMT -6)   
Yes - Zeusy - my LLMD is of the same notion, as her training parrots well with Dr. B's current philosophy - you get rid of the Lyme, all the other stuff takes care of itself because your immune system is back to working order. Even Babesia falls into this category - it typically is eradicated by the body's immune system but, in a body wracked with Bb, it flourishes and can make treating the Bb more complicated.

LupnerRN
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Date Joined Sep 2008
Total Posts : 350
   Posted 2/9/2012 4:14 PM (GMT -6)   
In my case, I haven't responded to any meds, IV or herbal, for Lyme and co-infections so my LLMD and myself are perplexed to "what else is going on with me" that we haven't found yet. I've been plateaued at 60% my normal for about 1.5 yrs now. I'm still too fatigued, dizzy and have assorted pains to be able to work!!

We've looked into molds, allergies, virus', etc. and still no improvement. So we're looking into anything we can find. Maybe I do have an unknown co-infection that's still causing my lingering symptoms????? It's very frustrating.

The fry test that I will be doing cost $495. Just like the Lyme panels, there's a couple different protomyxzoa ones also.

Twinkl - has your meds helped you much??? I'm pretty sure I've been on Plaquenil before for other parasites. Thanks for the website info. I definetely will check it out.

Anyone else have treatment and response experience??
thanks, Lisa
11/07 symptoms start
7/4/08 IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,

7/25/08 started on Biaxin

9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl

11/08 Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,

1/29/09 Added: Rif

twinkl1999
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Date Joined Sep 2011
Total Posts : 211
   Posted 2/9/2012 4:25 PM (GMT -6)   
It us hard to say if my treatment is working b/c my symptoms are mild compared to others. My real problem is frequent UTIs and I still get them after 3 months of treatment. But I do think I'll need to treat for a while to be cured.

Interesting that you've taken biaxin, plaqenil and artiminisin b/c those are common options for this bug.

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 2/9/2012 4:32 PM (GMT -6)   
Sorry to hear about the UTI stuff. That can't be fun. I've heard of others having chronic problems with that. :-(

Wow, maybe I don't have the proto bug. You'd think all those meds I've been on would've killed it. I hope I'm not wasting $500 bucks that I don't have for the test.
11/07 symptoms start
7/4/08 IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,

7/25/08 started on Biaxin

9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl

11/08 Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,

1/29/09 Added: Rif

yazzer
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Date Joined Jun 2011
Total Posts : 898
   Posted 2/9/2012 6:20 PM (GMT -6)   
Lupner - how about heavy metals? Esp HG (mercury )? It won't show up typically in a standard blood test so you have to do a "challenge test" with a known chelator.DMPS is one. Might be worth looking into. Heavy metals often stymie treatment at some point.

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 2/9/2012 6:59 PM (GMT -6)   
I haven't had my metals screened in about a year. They've always been normal or borderline high with blood are BioSet testing. It's worth checking again though! What's the DMPS and how do you get it?
11/07 symptoms start
7/4/08 IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,

7/25/08 started on Biaxin

9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl

11/08 Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,

1/29/09 Added: Rif

yazzer
Veteran Member


Date Joined Jun 2011
Total Posts : 898
   Posted 2/9/2012 7:26 PM (GMT -6)   
A doc would have to get the DMPS for you. You take it and it mobilizes any mercury in your body and you do like a 6- hour urine collection and test for the levels. It's usually the best indicator of mercury load in the body. Google mercury challenge testing...

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 2/10/2012 2:53 PM (GMT -6)   
thanx for the mercury info. will look into it!!

Just read Dr. Fry's interview/article on Biofilms and the new Protomyxzoa parasite. Here's my summary:

Protomyxzoa is between a malaria and a helminth parasite in structure. It has a biofilm.
Dr. Fry's treatment: anti-malarials- doxy or minocycline then azithromycin. Plaqunils.
No or low fat diet to starve the biofilm. And he was strongly against NOT taking supplemental magnesium because your just fueling the building blocks of the biofilm armour.
Exercise, hot tub, infra-red sauna, no sugars.
Vectors: found in mosquitoes and ticks

His focus in research is in the ALS rhelm. He says the biofilm causes significant amount of "sludge" that builds up in vessels that cause a lot of autoimmune diseases.

His research pretty much showed that a huge amount of the population has this due to mosquitoes. The more bites you've had the higher the risk. Then add tick bites to that. It can stay hidden in your body for more that 15 years.

I've been taking massive doses of magnesium due to my constant low levels. I will stop for a while and try other things for muscle cramping.

I was going to do the $500 protomyxzoa test, but I've been on all the meds that Dr. Fry uses with his patients. So I don't think I'll do it. But other co-infections have biofilm, so I will start being more diligent with the diet and other suggestions he has. I have been on Interfase Plus for a while but haven't been diligent with that either. That's an enzyme that's supposed to break down the biofilm.

Has anyone tried this Fry type protocol?

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 2/13/2012 9:33 PM (GMT -6)   

Zeusy
Regular Member


Date Joined Jan 2012
Total Posts : 237
   Posted 2/13/2012 9:58 PM (GMT -6)   
Hi,

me again. I don't think I can be too helpful though. I haven't done heavy metals, parasites etc. But i am treating biofilms! I used lumbrokinase first, but now am using interfase plus. I would try to be diligent with that.

Actually, I would maybe pick what you want to do (as I said, I can't be much help there. don't know much about anything except about antibiotics and biofilms) and try to stick to it 100% for a couple months. And stick to the anti-candida diet if you're not doing it.

It might be that you REALLY need just one specific aspect of the treatment (in addition to everything else). Like biofilms, or the heavy metals and other stuff other people have mentioned. So if you do most of the treatment, but miss one part, or do all of it but don't follow it 100% it won't work??

Just a thought

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2421
   Posted 2/14/2012 9:57 AM (GMT -6)   
Lupner, a good thing to help you absorb more mag from food is to keep your gut healthy. When we take all these meds, our guts are so out or balance, it's close to impossible to absorb all the nutrients from the foods and supplements we are taking.
Naturopathic Practitioner (former lyme sufferer / lyme literate)

Carrie48
Veteran Member


Date Joined Mar 2010
Total Posts : 638
   Posted 2/14/2012 2:40 PM (GMT -6)   
I think it is VERY important to address the heavy metals situation. Heavy metal poisioning (esp mercury) can cause a large array of symptoms....In fact, they can cause all the neuro symptoms pretty much the same lyme can. I had my blood tested for mercury by my LLMD. My nutritionist did a hair test and it came back show high levels of mercury. I've been reading thru the book "Detox or Die" and in it, they say that blood tests are NOT a good indicator of your levels.

I know I have lyme disease, but I'm pretty sure that I have high mercury levels too Especially since I had 10 amalgams removed WITHOUT SAFETY PRECAUTIONS three years ago (coincidently just before my health issues started..hmmmm). So, I know I have issues.

I am seeing a highly recommended integrative doctor on 2/22/12 that also specalizes in lyme. Can't Wait. I'm feeling very hopeful lately that I am going to beat all this! It's just going to take time and patience!
DX with Lyme and Erlichosis in January 2010. January-August: Biaxin and Amoxicillian. September 2011 - ? on Rifampin and Zithromax. Symtpoms mostly neuro and have 20 small lesions on brain.

Creekee
New Member


Date Joined Feb 2012
Total Posts : 1
   Posted 3/18/2012 9:56 PM (GMT -6)   
I tested positive for Dr. Fry's protomyxzoa in November. Have never been positive for Lyme or co-infections, just the protomyxzoa. Lupner, your summary reflects Dr. Fry's protocol very well. He has me on an extremely low fat (under 15 mg / day) diet and doxycycline. Still having trouble adjusting to the doxy, so can't report any progress yet. But one interesting thing: Dr. Fry says he suspects the diet may be the most effective part of treatment. Eliminating fat, animal products and magnesium removes the materials needed for maintaining biofilm, the critters become exposed, and your immune system can see and go after them.

He also feels that left untreated, the protomyxzoa eventually causes ALS, MS, etc. He says virtually all of his ME, chronic fatigue, ALS, MS patients test positive for the protozoa.

ellenk
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/5/2012 10:22 AM (GMT -6)   
Hi - our LLMD said the Fry has recently sequenced the protomyxzoa genome and found it to be in the helmith (sp?) family - he has said he is having success with ivermectin. I'm wondering if anyone has tried it.

bucci
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Date Joined May 2006
Total Posts : 1489
   Posted 4/7/2012 4:56 AM (GMT -6)   
WOW WEE.
IVERMECTIN is what I took when my Metemetrix stool test came back for
strongylides and that was what made my naturopath send me to the tick borne specialist. It was supposed to be a one shot dose but the tick borne specialist in Seattle, Dr S.M. gave it to me to take for about a month because i was on prednisone at the time and it makes it harder to get rid of.

I don't think she tested me for the Fry bug in Dec 2009 but she did tell me that Fry was cutting edge. and she also was a NO MAGNESIUM doctor and so was my other Arizona Lyme doctor.

Lupner..what is your dosage on the ivermectin?

I think my first day was 12 mg and then 3 mg per day. But I remember after my FIRST does something incredible happened like an elephant was lifted out of my chest. I was able to walk up the hill to the mail box and was JOGGING down the street and SINGING. It was amazine.

This is why I always say to take the Metametrix stool test. I don't know if this protozoan shows up in stool as something else or if there is a connection for this being found n stool or if the Strongylides which horses get all the time is what mosquitos or ticks are carryin around??

I wish I felt as good as I did back in thanks giving 2009 when I first took that Ivermectin that one day dose. It lasted about 2 to 3 weeks and then I started feeling lousy again and then that was when I met Dr. S.M. who gave me the daily dose for a month. But I also went on doxy the same time and got so sick.

I just took ivermectin 12 mg today because for last 2 days that olld symptoms are coming back.


i can not say it is what cured me but I can say it was incredible for 2 weeks how I felt after that first dose.

I have read ivermectin helping lyme patients before. and I think they took it all the time. It is expensive.

I have done the heavy metal chelation IV detox and this also made me seem like a miracle healing. it was IV and then that night I had to pee for 24 hours and they tested at Dr Data lab.

These IV treatments are like tune ups I thing I will always need along with the heparin for thick blood.

Has anyone ever heard of heparin for thick blood and biofilms.

If you have very thick blood you will have intense reaction to a heavy metal detox. It was much different after using heparin for a while.


Luper please keep us posted. I would like to know how long you are supposed to take the ivermectin and how much??


Bucci
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

nefferdun
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Date Joined Feb 2008
Total Posts : 900
   Posted Today 8:58 AM (GMT -6)   
Hi everyone, I have not posted in a long time. My latest battle seems to this bug, protomyxzoa. I would appreciate new information about treatment with ivermectin. Some people are taking it two weeks on, two weeks off. Others pulse it 3 days on, 4 days off. I have heard of someone taking it just once a week. I wonder if anyone knows what Dr. F is suggesting. Thanks.

bucci
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Date Joined May 2006
Total Posts : 1489
   Posted Today 6:46 PM (GMT -6)   
I would like to know also the ivermectin dosage and how often.

As I said before the first time I did Ivermectin the very next day I
thought I was cured. I was sprinting up the hill to the mail box and then
singing and jogging. It was incredible. Then I did only 8 days of 50 mg of
doxy and thought I would die.

I did 12 mg that first day and then was put on 3 mg a day for about a month
and then taken off and on to the doxy.

Is anyone doing heparin to deal with the sludgieness>

I am doing shots twice a day and if I lag on the shots I get very sick again.

This is not easy to do because of the swelling and bruising.

some people can get away with lubrokineese and nantokineese and other pill forms but others heparin is needed.

Also there is no sense trying to do heavy metal detox with sludgie blood.

The test for the blood is an ISAC panel by Hemex labs which is Lab Corp.

google Dr Carol Ann Ryser about thick bood and heparin.
Tere is also a troche form of heparin that melts in mouth.

also good news I just found out that Metemetrix labs takes medicare and bluecross blue shield.

For me the strongylides showed up in the stool test and back then I paid $400
for it.
If you google metemetrex labs there is a way to find a doctor in your area who has the kits of you can ask your own doctor to get one.

I would love to hear more about this protocol from Fry but have no money for testing.

Ivermectin is not cheap either but can be bought on line or over the line without a script.

nefferdun
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Date Joined Feb 2008
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   Posted 4/22/2012 7:52 AM (GMT -6)   
I also have hypercoagulation. I could only tolerate heparin for two weeks. My stomach was black and blue and there was no place to inject. But the real clincher was when I read it can make your bones brittle. I am worried about that because of my age. So no I take lumbrokinase/boluoke. In order for it to work you need 2 pills three times a day on an empty stomach. I only manage to take four.

I agree with you thinning the blood is critical. The medication can't penetrate deeply into the tissue, you can't detox and your cells are not oxygenated as well with thick blood. I read the capallaries are 8 microns wide and a red blood cells is 7, so if you have a lot of fibrin, it is really slowing things down. Plus the pathogens can build the biofilm up in the fibrin.

I took horse wormer ivermectin for two weeks. Then I ordered srtomectol from Canada which is the human form. The vet kind is about 3 dollars for two weeks whereas the human version (that comes from India) is about $50. But is it hard to dose the vet wormer with any accuracy.

I did not feel much different. I do believe I have the F bug though because of the symptoms I am having.
I guess, come to think of it, I am better because some of the symptoms, like the hoarseness in my voice (that comes and goes) has not been back and I have a little more stamina.

I do not know how to continue. So I am just guessing and will follow what other people have suggested doing 3 days on and 4 days off for a month to see what happens.

F says the most important part of the treatment is a low fat vegan diet which I have been following for about a month. You should also avoid wheat because of the arginine but I have not done that. The diet is very restrictive and hard to get used to. I am learning to make some good vegan loaves though and some great soups. Giving up meat is not problem (I have not had red meat in 4 years) but I miss cheese so much now and then I cheat and have some.

That is good to know about metemetrex labx because I have medicare.

I hope someone can share more information about ivermectin. I cannot tolerate plaquenil and have gotten to the point I can't tolerate malarone or mepron either. I tried chloroquine/primaquine and just about lost it so I am afraid the ivermectin is all I can handle. I am also taking minocycline.

bucci
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Date Joined May 2006
Total Posts : 1489
   Posted 4/22/2012 8:20 AM (GMT -6)   
Hey Nefferdun thanks. I'm going to try the loubrokeneese.
The ivermectin I topless 3 mg pills from pharmacy.

What is the dosage?

Are you in pain?

Do you have veins in legs bubbling out?

I'm so twisted now about the diet thing after

After reading Dr Jack Kruse and Latin and Lyme
And now Fry going with Raw. Vegan.

I love the way I feel on raw food and have
Lived in raw communities. Cafe Gratitude is my family
So I really have Eaten it as a whole great prepared meals.

It lightens me up but there is no B12 in vegan
Food and I could not supplement enough.

Then I saw the paleo diet and meat. It felt great for 2 weeks
And then I felt worse.


Food is definitely key but there is something
Else that is taking over my everyday .
Between brain fog and pain and flu like.

I love when the good days come .
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,
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