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Lyme Disease
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Posted 11/2/2017 10:30 PM (GMT 0)
Hello folks,

Did a more extensive test with Dr. Stephen Fry's laboratories here in Scottsdale. The results came back as

Funneliformis Mosseae


The Nurse Practitioner I am working with says this isn't a definitive "Lyme" diagnosis as per the CDC guidelines, however there is clearly a parasite/ organism in my blood causing all my neuro symptoms. BTW I had a separate Lyme test done and the only band it flagged was the IGM 41 band.

Long story short, 9/21 went to the ER with a super fast heart beat that came out of nowhere. Ever since then I have been dealing with foggy headed ness, muscle twitching, anxiety ( better since on doxy) and fatigue. Also head pressure, and faint headaches. Only thing I am on is Doxy ( scaling back to 100 mg per day).

Anyway, anyone have any experience with this diagnosis and can shed light on what exactly it is that I am dealing with?

Thanks

Frank
Posted 11/2/2017 10:41 PM (GMT 0)
That's the same as Protomyxzoa Rheumatica, right? or FL1953.

I know of one case - here in my Province - the gal had treated for quite a long time - several years..and in the end treating that along with Cholestyramine (if I'm remembering correctly) and she finally got well.

I remember she wasn't supposed to eat any fat...and this caused some serious brain effects.


Here is her story:

www.justinandchrista.ca

Warning: It's quite an emotional story.
Posted 11/2/2017 11:35 PM (GMT 0)
Honestly Girlie I am not sure. Thank you for the link, I don't want to read it at the moment. Need to be emotionally prepared. Is it safe assume there are varying degrees to the severity of whatever Funneliformis Mosseae is?
Posted 11/2/2017 11:50 PM (GMT 0)
I don't know - other than there are different species of it. just found that by googling it.
Posted 11/2/2017 11:53 PM (GMT 0)
Gotcha. So far the Doxi seems to have calmed down my crazy heart stuff. They are gonna do an MRI soon on the brain and spine just to rule other issues out. I will keep you posted.

Thanks

Frank
Posted 11/3/2017 12:00 AM (GMT 0)
lab tests are highly unreliable in the false negative areas so you may have other pathogens. thing with doxy is its a broad spectrum antibiotic so it should help whatever is ailing you. you should go to a combo therapy especially since its working and you don't want the pathogens building any resistance.

you also need to take an anti-parasitical med to add to your regimen. there are a number of prescription and herbals to choose from.
Posted 11/3/2017 3:57 AM (GMT 0)
Hi Rikky,

Anti parasitical, is that the same as anti fungal? My doc does not recommend antifungal because of side effects including stroke and heart issues. What anti parasitical meds do you suggest and what herbals May be good for this? Also, what about Magnesium?
Thanks

Frank
Posted 11/3/2017 3:59 AM (GMT 0)
Also I should mention this most likely came from a tick bite 4 years ago , developed a red bullseye, didn’t know what that meant at the time..
Posted Today 7:58 PM (GMT 0)
Hi Girlie,

I just watched the video, pretty brutal. May I ask, is this a typical experience of someone with Lyme disease in terms of severity? I am guessing here her symptoms early on were Lyme, and then morphed into PR?

Post Edited (eldonkey) : 11/30/2017 1:04:08 PM (GMT-7)

Posted Today 8:49 PM (GMT 0)

eldonkey said...
Hi Rikky,

Anti parasitical, is that the same as anti fungal? My doc does not recommend antifungal because of side effects including stroke and heart issues. What anti parasitical meds do you suggest and what herbals May be good for this? Also, what about Magnesium?
Thanks

Frank

No, anti parasitical isn't anti fungal.

Parasitic meaning treatment for Babesia (co-infection)

Magnesium can be purchased as a supplement. Many LLMD's have patients take it.
Posted Today 8:58 PM (GMT 0)
So is the PR parasitic or fungal? What is a good anti parasitic. Scary stuff for sure, I have no idea if I am Herxing from a better diet, or showing symptoms of a coinfection or symptoms of Candida. I am able to function just fine, I just feel out of it, and have mild bits of anxiety and depression. No pain to speak of, and white tint to my tongue, which makes me think Candida?
Posted 12/1/2017 1:29 AM (GMT 0)
FL1953 - is a parasite. (Protomyxzoa Rheumatica)
Posted 12/1/2017 9:07 PM (GMT 0)
Thanks Girlie. Yes thats what my LLMD said yesterday. She is gonna RX Nystatin wash just in case for the slightly white tongue. So far I am doing ok. Better than I was 3 months ago, but I still feel a bit off. Fucntioning, working, and living, so that is very good! Thanks again for sharing the video, I did reach out to Christa and Justin with a few additional questions but have not heard back yet.
Posted 12/1/2017 9:14 PM (GMT 0)

eldonkey said...
Thanks Girlie. Yes thats what my LLMD said yesterday. She is gonna RX Nystatin wash just in case for the slightly white tongue. So far I am doing ok. Better than I was 3 months ago, but I still feel a bit off. Fucntioning, working, and living, so that is very good! Thanks again for sharing the video, I did reach out to Christa and Justin with a few additional questions but have not heard back yet.

I wonder if they will get back to you.
They have two kids now - so busy busy life. Hope they do answer your questions

She was treated by LLMD MR in Seattle.
Posted 12/1/2017 9:17 PM (GMT 0)

eldonkey said...
Hi Girlie,

I just watched the video, pretty brutal. May I ask, is this a typical experience of someone with Lyme disease in terms of severity? I am guessing here her symptoms early on were Lyme, and then morphed into PR?

She had severe symptoms - I wouldn't say it's typical. She was hospitalized several times.

Interesting though that she also had periods of time where she was (or appeared to be) highly functional.
Posted 12/2/2017 6:04 AM (GMT 0)
Stephen’s response:
I am sorry to say that although I have researched this organism extensively, I can find nothing on it in the literature; nearly all is from the work of one person, Stephen Fry, who has also begun to file patents around the organism. I tend to get twitchy when this sort of thing happens. It has been 4 or more years since he began talking about the organism, nevertheless, NO ONE in the scientific world has done any work on it, nor is there anything in the journal literature. My skepticism increases. This does not mean that such an organism does not exist, it is just that I hear of things like this all the time and many of them turn out to have no foundation. That being said, the organism is reputed to be similar to both babesia and the malarial parasite. You can use the babesia protocol (in the babesia book) for treatment. There are also a number of people on the internet who detail their road back to health.
Stephen

buhnerhealinglyme.com/co-infections/fl1953/
Posted 12/3/2017 8:26 PM (GMT 0)
I am in GIlbert, AZ.....Have you found a good lyme doc? I'm getting mixed messages from MD's and naturopaths and unsure of what to do.....every specialist I see says "sounds like lyme to me" but because I am only reactive in 4 bands, they all dismiss it quickly.....
Posted 12/3/2017 9:23 PM (GMT 0)
JM - I have some options for LLMD's in Arizona.

You can email me if you don't get some good recommendations from members...and let me know which cities/towns near Gilbert you'd also consider driving to.
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