posted
So I visited my doc today to discuss my Igenex results that were positive. This doc told me I don't have lyme, but rather I have protomyxzoa rheumatica...and I paid another $400+ in labs today to get these tests started! I am totally confused and naive. I mean it took me forever to find lyme as a possibility and I was positive I had this! Now this! Opinions please...... And I can't seem to find a lot of information about this...I just want to be sure I am not being completely ripped off....UGH!
Posts: 148 | From AZ | Registered: Sep 2011
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Are you seeing an LLMD ?
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
He is a well recognized Dr. that has done many years of reserach on Lyme and treats many patients through ILADS standards. I heard a lot of great things about him...but now am totally confused...
Posts: 148 | From AZ | Registered: Sep 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
This pathogen is also referred to as Fry bug or FL1953.
It is another co-infection of Lyme.
It is likely that you have Lyme AND Protomyxozoa Rheumatica. And Bartonella and Babesia and various other bacteria, viruses, fungi and parasites.
Lyme is such a misleading term, as it implies that your infection is just Borrelia. We all have multiple infections, and sometimes Lyme is not the most problematic. It's just part of the mix.
Every time a "new microbe" is discovered, it gets lots of attention. Everyone is looking for the proverbial straw - the infection that underlies and sets in motion the whole slew of symptoms and infections that our population has. This is becoming the case with Fry bug.
Hey, wait! Isn't Fry labs in AZ? Good heavens! Is this your doc? No wonder he's obsessed with P.Rheumatica!
And I thought this guy was a Ph.D. But I hear that he treats patients. I don't know.
Anyway, I don't think you are being ripped off. I think you are being swept up in the wave of excitement about this new discovery.
But, yes, it should be treated. And some people do find resolution of symptoms with treatment for this pathogen.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Telling you outright that you DON'T have Lyme when you obviously are symptomatic of an infection AND you have positive Lyme Western Blots(wow!!!) through IGeneX sounds pretty strange to me.
Is it possible there was a mis-communication and he meant to say you also have this co-infection, as BoxerMom said?
If he refuses to treat you for Lyme with symptoms and positive tests, I would be concerned, but that's me, and I don't have all the info, and I'm not a doctor.
EDIT: I just re-read your post and realized I misread! Yo never mentioned positive Western Blots, just positive results from IGeneX. That might be relevant to the puzzle, even though a negative Lyme test *NEVER* rules out Lyme infection.
If I may ask, what tests did you have done, and what were the results?
posted
nenet.....I did get the western blots from Igenex, and the IgM was positive on three bands. This is why I thought it was very strange..I have all the symptoms associated with Lyme, and he told me that this protozoan mimics lyme with the symptoms and it will show up on a lyme western blot. I can totally understand that it may be another co-infection but he did not mention that at all. He stated that I didn't have Lyme but he was 99.9% sure I had this. He also said he is traveling and patenting his research trying to prove that lyme isn't the problem, the real problem is this Protomyxzoa rheumatica. I guess I just wanted to see other opinions.....I will wait the two weeks like I have waited my WHOLE life to get the results,...then I might just seek a second opinion. I really just want to do what is most beenficial for me...I want to get better like yesterday! Yes Boxermom...you nailed it on the head. And because he is the only one researching it I have to wonder if this is legit...ya know?
Posts: 148 | From AZ | Registered: Sep 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
No wonder you are skeptical.
Discoveries and patents are THE THINGS in science. It's how you make a name for yourself, and guarantee a life of sweet research grants. And maybe something named after you.
This discovery is a big deal, but I don't think it's THE THING in Lyme disease. We all have multiple infections, and each of us has a different set of problem infections causing our symptoms.
I would do some P.Rheumatica treatment with this doc, but if he doesn't treat your other infections, go elsewhere!
And don't hesitate to get that second opinion. You have to be confident in your doc.
Lyme, co-infections and opportunistic infections take a long time to treat. I know you're anxious to recover your health. That is completely understandable.
But don't throw out the baby with the bathwater, if you know what I mean. Don't toss the good while getting rid of the bad. This doc may still have some good options that will help you make progress.
And definitely keep us posted on the P.Rheumatica. You could become the expert!
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
"Lyme is such a misleading term, as it implies that your infection is just Borrelia. We all have multiple infections, and sometimes Lyme is not the most problematic. It's just part of the mix."
I agree with BoxerMom. Sometimes we can be Lyme obsessed. My daughter in law moved to AZ from PA and was sure she had "Lymes" because a doctor told her she had all the symptoms.
Turns out she didn't.
If you do really have Lyme, it may show up again in a later test. If it does, I know this doc, and he is confident he can take care of Lyme. It's this organism that he is seeing that is complicating things.
My daughter has all the symptoms of Lyme. We have run a western blot every year and looked for spiroketes in the blood, and they just aren't there.
After five years of standard protocols, she is trying something that will target that FL1953 specifically.
She is herxing unlike any other reaction to any other antibiotics. And her immune system is working in overdrive.
Get a second opinion, if you feel you need to. But, I would really give this at least six months.
He will work with you if you show that you want to be a team player.
You are welcome to private message me. I don't want to post protocols here. Everyone has a personal journey.
Posts: 2903 | From AZ | Registered: Feb 2006
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Kelmo - great response.
I think FL1953 treatment is going to help a lot of people who aren't recovering with the ILADS protocols. That, to me, is the great discovery. That some people have this as their primary infection, or need to be treated for it in addition to all the rest.
I'm interested in your daughter's protocol. I will PM you.
I also think this doc understands the complexities of Lyme and co-infections. I know lots of LLMDs who are testing and treating for Fry bug, so he is having a tremendous influence.
posted
I've just started treatment for this parasite. I hope it can stop my ALS progression.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
My daughter got IGENEX pozitive only 3 bands and not CDC pozitive but the GREAT DR W in GERMANY tested her with biotensor and treated her with exstra treatment for LYME and she had a FRY lab with a FEW bugs but has memory ADD issues and muscle pain still. I know is not lyme causing this and she has arthritis in her joint and I KNOW FOR SURE THAT IS the BART and FRY BUG the protozoa.
SHe used to get puffy but now after 6 months of BIAXIN , plaquinil , HH and A BART she is better .
YES FRY BUG can make you look like lyme and is WORST than lyme .WE killed lyme with BIONIC treatment in germany still sick with the F bug !
Posts: 1379 | From disable | Registered: Aug 2011
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