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Posted 11/14/2018 6:03 PM (GMT 0)

Sjtom said...
Hi, I am also in the same boat as many posting here.
Was just dx with lyme but have been in fear for a year now.

Does anyone get more intense twitching from the Herx?
I took an Epson salt bath and the twitching was extreme...

I was igenex only positive for igm 41 and 45 so I am still in fear that its not lyme?

Thanks

Welcome, Sjtom

My twitching had a mind of its own.
It was gone for several months and a few days ago it came back for a few hours. I’m thinking it’s because I’ve been on a really strong treatment protocol and it’s doing some killing of the persisters.

With those test results - it’s understandable you’d be questioning the diagnosis.
I had a positive IgM WB and I have questioned it many many times.

Do you have a LLMD or LLND to guide your treatment?


And did you have a known tickbite and/or EM rash?
I didn’t have either one - so the positive test was important to me.
But it’s really not necessary - a clinical diagnosis from a LL dr is sufficient.

Responding to treatment - ie herxing and/or improvement is also indication that you have lyme.
Posted 11/14/2018 6:30 PM (GMT 0)
Hi, thanks for the quick reply’s.

I am working with a llmd- she told me that I was positive. This was after a year of having the same positives on the reg lymes tests from my md. For a year poss- 41- 45- sometimes 23 and 58.
But always 41
I don’t think I ever had a rash, but I am in the woods all the time so had a lot of exposure.
I’m two weeks into doxy- 200mg a day.

Thanks for the responses- I’ll keep u updated and yes I will start a new thread next time.

Btw- a year of top als docs say I don’t have it. I twitch non stop.
2 clean mega- have another in January.
Feel like I’m getting weak? Have thumb joint pain and weakness.
Thanks!
Posted 11/14/2018 6:41 PM (GMT 0)

Sjtom said...
Hi, thanks for the quick reply’s.

I am working with a llmd- she told me that I was positive. This was after a year of having the same positives on the reg lymes tests from my md. For a year poss- 41- 45- sometimes 23 and 58.
But always 41
I don’t think I ever had a rash, but I am in the woods all the time so had a lot of exposure.
I’m two weeks into doxy- 200mg a day.

Thanks for the responses- I’ll keep u updated and yes I will start a new thread next time.

Btw- a year of top als docs say I don’t have it. I twitch non stop.
2 clean mega- have another in January.
Feel like I’m getting weak? Have thumb joint pain and weakness.
Thanks!

Band 23 is lyme 'specific' - meaning only lyme causes that band to be positive..

The twitching is a worry...I know. Early on in my symptoms...I had twitching - all over...and when I googled - and ALS came up...I pretty much went into a panic/fear mode.

I'm glad you have a LLMD and are getting treatment.
I also got very weak...muscle atrophy.
Posted 11/14/2018 7:12 PM (GMT 0)
I had twitching all over. I will still get random spots - usually on head, face or biceps. Magnesium is helpful - hopefully you are taking some. I prefer mag glycinate right before going to bed.
Posted 11/14/2018 7:50 PM (GMT 0)
Attack bart and myco with all u got and can afford and u will get better.... ...als only decribes what is occuring and is bolongna
Posted 11/14/2018 9:54 PM (GMT 0)
I've had a bit of a set back this week. I've been worried about ALS on and off for a year now. My fasciculations have been pretty much 24-7 and bodywide for the past couple months. Other than that, I have felt better than usual.

I decided to take a week or 2 off bvt to see if my face rash and swallowing issues resolve, which they have for the most part. But I am feeling really bad. This is confirmation that I need bvt and that the rash and swallowing issues must mean that the bv is addressing something. I'm thinking bart. Anyhow, waiting for my shipment of bees to come in this Saturday, and back to stinging I go.
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