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Undiagnosed Autoimmune with back pain, spasms, and stiffness

Autoimmune Diseases | Last Active: Nov 14, 2021 | Replies (91)
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@cbrackle

Amberlynne5,

Your symptoms and lack of diagnosis sound very similar to mine.
Sundance references a lab to send your blood to for Lyme testing. It is Igenex in Palo Alto, Ca.
https://igenex.com/
Any licensed Dr. can send your sample in for testing if they r willing. And like most things Lyme related it was not covered by insurance.
I had my Dr. send my blood sample in (very specific instructions -on their website) and came back positive.
I have been retested due to my doubts (most all my Dr.s poo-poo’d it) and I was positive again.

I’ve run the Dr. and specialist circuit several times w no results. Until I found an LLD (Lyme literate Dr.)
Go here to find some suggestions.
https://www.ilads.org/
Due to the stigma of treating “chronic” Lyme there are not a lot of drs who treat it and so it may take 1-6 months to actually get in to see one.

I would be glad to let you know more of my journey if you would like, but either way, get in touch w a local Lyme support group and they can give you advice on Dr.s and diagnosis.

God Bless and hope you find answers or at least a direction.
Carl

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Replies to "Amberlynne5, Your symptoms and lack of diagnosis sound very similar to mine. Sundance references a lab..."
John, Volunteer Mentor | @johnbishop | May 20, 2019

Hi Carl @cbrackle, I noticed that one of your links doesn't work - it looks correct but I received a bad gateway error message when I click on the ILADS link. I did a Google search and found it and was able to access the website by the Google search. I copied and pasted the link again below but it also doesn't work for me.
https://www.ilads.org/
I'm tagging our director @colleenyoung to see if this is a coding issue or the site is being blocked.

John

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Sundance(RB) | @sundance6 | May 25, 2019

Sorry I am just now cathing up on my emails, have been traveling all week. Spending a lot of time driving and thinking this week, I have come to a conclusion I have known for many years, IT'S YOUR BODY AND IF YOU LISTEN TO IT THEN IT WILL TELL YOU WHAT YOU NEED TO DO TO HELP YOURSELF!
I have been fighting Chronic Lyme Disease for almost a year now.
As I've said before, I Glow in the Dark from all of the pictures they've taken of my insides, and I barley have enough Blood to Survive they've taken so many samples! (LOL) And no one has any answers! Just Excuses!
Where has it all got me? To the conclusion that it is my Body and I know it Best!
I have put myself on a small mediction plan for my pain and make myself take rest when it is a certain time of the day.
Last week that meant stopping in a safe park or parking area I felt safe in rolling down the windows just a bit to get a breeze in. Laying my drivers seat back and sleeping for an hour.
I made it through a long without my body/mind not crashing as can happen with Lyme!
Will I ever be cured of it? NO! Will anyone else? Probably not! It's just doing what you know Best to Help Yourself!
Sundance 🙂

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