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Protozoa Rheumatica?

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Posted 4/28/2019 10:22 PM (GMT 0)
Sorry so many questions lately but I know there’s a ton of different experiences among this group so I turn to you all again...
Have any of you recently tested for Protozoa Rheumatica (fl1953)? Are we supposedly all done worrying about this co-infection now? I know it was a hot topic for a while but I don’t see much new out there. Fry labs no longer lists it as a service on their site. Also I know Dr M.R. had supposedly treated a woman successfully for this some time ago. I recently asked a question to him about this bug during one of his live webinars and he responded that he wasn’t much of a believer in it. Says he wasn’t sure what fry was seeing but didn’t seem to be something on which he focused at all. I was surprised but I know new ideas/treatments hit the Lyme world and then sometimes phase out of the conversation.
So have any of you recent experience with it? Any of your doctors keep it on their radar? Ours does not but I’m interested in hearing what all you guys have heard.
Thanks!
Posted 4/28/2019 10:36 PM (GMT 0)
I never had any testing from Fry. You’re right that I rarely ever hear it mentioned anymore unless it’s an old documentary or something.

Any knowledge of why it’s no longer listed on the test panel? Was it debunked? Identified as something else?

Never mind my questions. Apparently I didn’t read your 2nd paragraph. You answered my questions already.

I hear you about new things coming out and being talked up and then falling off the radar. The whole alternative medical scene feels like a big circus to me at times, and I lose confidence and hope of recovery. It just starts to sound and feel hokey after a certain point, and I am not smart enough at science to wade through the information and really understand what is legitimate and what is likely a crock of BS at best to permanently harmful at worst.

I just keep playing guinea pig as I have to do something (sigh).

Post Edited (WalkingbyFaith) : 4/28/2019 4:43:21 PM (GMT-6)

Posted 4/28/2019 10:45 PM (GMT 0)
I would love to know! It has been one of the topics I think I avoided out of fear lol. Always wanted to think nah... we don’t have that. But since plateauing in treatment I do wonder. Never hear much anymore. I’ve asked two Lyme drs and neither knew much about it nor did they seem to believe it was worth exploring. Asked Dr MR and even though he’s the one that helped the woman from Canada I think, he didn’t seem to believe in it either. Felt it was more likely babesia. Hoping others will chime in if they know more. Really don’t want to starve my daughter of fat, which is what used to be suggested as a treatment in addition to antimicrobials lol. She suffers enough.

Post Edited (Upatnite) : 4/28/2019 4:48:27 PM (GMT-6)

Posted 4/29/2019 3:11 AM (GMT 0)

Upatnite said...
Sorry so many questions lately but I know there’s a ton of different experiences among this group so I turn to you all again...
Have any of you recently tested for Protozoa Rheumatica (fl1953)? Are we supposedly all done worrying about this co-infection now? I know it was a hot topic for a while but I don’t see much new out there. Fry labs no longer lists it as a service on their site. Also I know Dr M.R. had supposedly treated a woman successfully for this some time ago. I recently asked a question to him about this bug during one of his live webinars and he responded that he wasn’t much of a believer in it. Says he wasn’t sure what fry was seeing but didn’t seem to be something on which he focused at all. I was surprised but I know new ideas/treatments hit the Lyme world and then sometimes phase out of the conversation.
So have any of you recent experience with it? Any of your doctors keep it on their radar? Ours does not but I’m interested in hearing what all you guys have heard.
Thanks!

Here’s the Justin and Christa story - warning - I was in tears for a good portion of it. But it’s s good one to watch .

https://www.justinandchrista.ca

So LLMD MR said he wasn’t a believer of it?
How can he say that when he treated Christa for it?
I guess he changed his mind?

Well my LLMD Dr J (who is one of the - if not the most experienced LLMD there is) never mentioned it to me.
And if Fry labs doesn’t test for it anymore - who does? The treatment is harsh if I’m remembering correctly - I think you have to go off or greatly reduce fat in your diet .
Posted 4/29/2019 3:32 AM (GMT 0)
Girlie, I know that story and it is a tear jerker for sure. Very moving.
I participated in one of Dr MR live webinars and just asked a question about it. At the time I did not know he had treated her for it. His response was that he really wasn’t sure what Fry was seeing in biofilm and felt it was likely harmless Protozoa. Said that if a patient has night sweats, air hunger, fatigue etc... he assumes it’s likely babesia. Doesn’t really get into the whole mystery bug. This was a few months ago and I know he posts his webinars online. I’ll go back and try to re-listen to his response if I can find it.
Our Lyme dr just says if it quacks like a duck it’s probably a duck... babesia. Not to say that there aren’t mystery bugs affecting us out there but he tries to focus on the big ones we know about.
Glad to know dr J doesn’t focus on it too much either. I’m happy for anyone who found relief treating for it although i find it extremely overwhelming to worry about every bug. The strict no fat diet seems disturbing to me. Protocols for PR sound ridiculously tough and it’s said to be next to impossible to get in remission. I did not contact Fry labs for testing but see no mention of it on their website unless I’m missing it.

Post Edited (Upatnite) : 4/28/2019 9:37:29 PM (GMT-6)

Posted 4/29/2019 3:46 AM (GMT 0)
I’ve not known of any patients under Dr J who have treated the FL1953 - not yet anyway - so if he does treat it - it’s certainly not common. I have communicated with about a dozen patients in the past several months - and no one has mentioned it as part of their treatment protocol...


Yes the diet would be so difficult - didn’t Christa go delerious when her brain was starved of fat?
Posted 4/29/2019 3:51 AM (GMT 0)
Oh my goodness I hadn’t heard that about her response to the diet. I’ve seen a few clips... her husband posted a video that I’ve seen but that is disturbing.
Posted 4/29/2019 3:57 AM (GMT 0)
The link I posted is their story - it’s worth a watch - it’s a couple hours long I think. It’s closer to the end when she’s on the no fat diet.
At one point They actually fly LLMD MR to their home here in bc Canada because she’s so sick
Posted 4/29/2019 4:04 AM (GMT 0)
Girlie, I will have to watch when my mood is right. I’m not in a place where I think I can watch further horror lol. I’ll take your word for it though. Give me a hint, what was it that helped her turn the corner? From what I know she did a bit of everything?
Posted 4/29/2019 4:55 AM (GMT 0)

Upatnite said...
Girlie, I will have to watch when my mood is right. I’m not in a place where I think I can watch further horror lol. I’ll take your word for it though. Give me a hint, what was it that helped her turn the corner? From what I know she did a bit of everything?

Yah - happy ending but a lot to get thru to see that - definitely don’t watch if you’re not up to it... definitely can trigger.

In the end I think it was Cholestyramine that helped her .

Good news she is still well today - think it’s been 5 years now? (And 3 kiddos)
Posted 4/29/2019 6:49 AM (GMT 0)
Ok so I read a ton more tonight. Got lost in a bunch of old posts from some of dr frys patients. Turns out Fry eventually determined his mystery bug to be a fungus/mold. Treatment changed over time and last or most recent protocols were doxy, an antifungal, along with biofilm treatment. Patients were told to cut fat out to starve the biofilm. Quite an evolution over time and maybe that’s why the loss of interest? Hard to say what pops out of a biofilm. Also maybe that is why Christa turned a corner with cholestyramine. Interesting stuff.
Posted 4/29/2019 10:28 AM (GMT 0)
I have something that may not be FL1953, but it is a protozoan and it does have an effect. Mine focuses its bioflim in my airway just below my uvula in the back of my throat. It responds well to fat reduction, Nigella sativa seeds, and ivermectin so whatever it is, it has some nematode and grows like a protozoan. My circadian rhythm seems to be reset and I have a 5 hour sleep cycle. This may or may not be because of the pathogens, but you can set your clock by it. Things that increase sleep beyond 5 hours are exercising using leg presses, running, and sometimes elevated Vitamin D from the sun.
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