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I was diagnosed with Guillain Barre Disorder but I believe I was misdiagnosed and think it’s lyme

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Posted 5/14/2019 1:59 AM (GMT 0)
I woke up one morning with no feeling in my feet I had been under very bad stress for a year .They diagnosed me with Guillain Barre but I believe it was Lyme and coinfections .Iwas paralyzed and was in the hospital for 3 months where I was sent home 60 lbs lighter and in a wheelchair I have started doxi ivermectin and fenben but not helping feet still partially numb where I can’t drive and still don’t know what I have .I had to quit work and am on a fixed income.Is there a cheaper testing that I can try ? All my money goes to supplements and promised help that doesn’t come .I don’t know what to do I barely go out due to exhaustion but after trying sharkmans protocol she rated sleeping again but my kidneys are horrible and my sex drive is nill.Can someone give me advice I was going to try dr Clark’s kidney liver cleanse?Or possibly a good Dr in Boston Massachusetts where my insurance Medicare can pay a little of my supplements ....HELP!!!!!!
Posted 5/14/2019 2:06 AM (GMT 0)
Goodness sorry you’ve gone through this. How was the GBS diagnosed and did they do IVIG? I would totally encourage you to see an LLMD and test for Lyme. I know it’s terribly expensive so just have someone run an Igenix western blot for Lyme. I don’t think it’s necessary to test for all co-infections because a lot of good Lyme drs will treat for those based on symptoms. Testing is poor. Please read through the forum. There’s a ton of good info and people are very helpful and will likely be along to comment further. Good luck.
Posted 5/14/2019 2:39 AM (GMT 0)
I agree with Upatnite - do the Igenex WB IgM and IgG -costs $250

You need a dr to sign the lab req....any dr will do.

Call Igenex and they will send you the test kit.

Even if u don’t get a positive - you may have a lyme specific band light up...which is enough for a LLMD to use as a backup to a clinical degree diagnosis.
Posted 5/14/2019 3:19 AM (GMT 0)
I'm so sorry to hear that you have gone through that. To be wheelchair bound from this disease is truly tragic. To find out that one has been denied proper diagnosis and treatment is also very very sad.

If you really think your symptoms are from Lyme n cos, get the Igenex Western blot. I myself had to apply for a low-income grant for the cost of the test, and got a reimbursement for it (Rotary of Eureka I think it was). I could no longer afford the better supplements and was (still am) in a great deal of debt.

All the fatigue and weakness; it is very possible with Lyme and co-infections.

People are starting to get it. I mean, people have had it, for awhile and people are starting to get that this is epidemic, easy to get from a tick or what have you, and hard to treat.

I'm 100% sure I've been exposed to Lyme and bacteria, saw the bulls-eye bite with my own eyes; the likely co-infections Bart/Babesia/Tularemia are just as bad if not worse, and common too.

Get the IGenex Western blot (Lyme panel? not sure what it's called, any MD can send requisition form or fax), look for a positive Lyme specific band (they are 23, 31, 34, 39, 83/93)

do a Google image search for "Lyme Bingo"

https://www.google.com/imgres?imgurl=https%3A%2F%2Fi.pinimg.com%2Foriginals%2Fb1%2F00%2F53%2Fb100536dec4b222440f41f2b3dfc48db.jpg&imgrefurl=https%3A%2F%2Fwww.pinterest.com%2Fpin%2F243827767309132094%2F&docid=rgtxKYi2JM9yWM&tbnid=5OWvNrQ9dIKKbM%3A&vet=10ahUKEwjQ152BhpriAhUGhuAKHcmxCO0QMwhEKAEwAQ..i&w=691&h=693&bih=711&biw=1254&q=lyme%20bingo%20&ved=0ahUKEwjQ152BhpriAhUGhuAKHcmxCO0QMwhEKAEwAQ&iact=mrc&uact=8

that is the only definitive proof on paper (besides and despite my legion classic symptoms, neck pain, fatigue, brain fog...) that I have Lyme-disease, the specific band that as Girlie said "lit up" on the IGenex Western Blot which is one of the world standard tests, if not the world standard.

That's it. Find a test (igenex western blot). Find an LLMD (clinical or igenex diagnosis).

I'm more than 10 years in and still only about 50% of the journey (knowing for sure I have it but not being able to afford treatment, and being denied repeatedly).

That's what we are facing.
Posted 5/14/2019 5:27 PM (GMT 0)
they gave me that misdiagnosis... was there any medication at that time ? that may have spurred it ?
i ended seeing 33 docs and finally a lady with a microscope saw the spirochetes!60$ and i started walking by using bee venom therapy which corrects autoimmune conditions if tolerated at 15$ a week. took a while with other modalities keep us posted welcome
Posted 5/14/2019 10:42 PM (GMT 0)
Guillain-Barre syndrome is an autoimmune disorder which is often triggered by an infection. So if you have an infection and you get paralysis from it, then it's not a misdiagnosis. It's an accurate diagnosis, but they may have failed to diagnose the infection that caused it.
Posted 5/15/2019 10:26 PM (GMT 0)
This presentation describes a case where GBS was caused by bartonella henselae

https://www.youtube.com/watch?v=uyehsrrxrqw
Posted 5/16/2019 8:52 PM (GMT 0)
Borrelia causing it:

https://journals.lww.com/pidj/Citation/1998/03000/GUILLAIN_BARR___SYNDROME_IN_A_CHILD_WITH_SEROLOGIC.25.aspx

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5314865

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4488652

Post Edited (isitlyme) : 5/16/2019 2:58:40 PM (GMT-6)

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