posted
History: Saw family doc for dragging a foot last fall. Sent to neuro. Neuro thought I had MS but didn't feel the MRI was significant. Three minor spots that might have been normal or lesions. Sent to university. University felt it was certainly MS. Did a lumbar puncture to affirm. LP was negative. (Lyme test in CSF was 0.2)
University Neuro has this narrowed down to: PLS ALS (most statistical likelihood) Hyperspastic Paraplegia
Currently: I can walk. I drag a leg, have fasciculations, hyperreflexia, clonus. My age makes MND unusual at forty and no military background.
Tick history: Medically confirmed tick bite in 2008 and short round of doxy.
LLMD: Traveled to an LLMD in Minnesota for the last five weeks. Igenex test showed four positive bands and one indeterminate. If the indeterminate had been positive I would have been CDC positive.
So we are going to treat because, really, what do I have to lose?
But I am having a really hard time determining course of action. Are there any definitive protocols?
Originally the LLMD doc had planned doxy with ceftriaxone - four days on and three off.
But the home health co. just called and the meds are:
Doxy Ceftriaxone Daptomyacin
7 days straight for six weeks. And Zofran for nausea.
I had read somewhere that 7 days on can make ALS patients worse. But then I read they NEED the constant drugs and heavy.
I just want to make sure I'm not making things worse. Sigh.
Any dependable resources?
Posts: 1 | From Iowa | Registered: May 2017
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
The CDC standards for diagnosing lyme disease are extremely conservative and often false negative. By ILADS standards, you would be positive. Many here do not test positive by CDC standards, myself included.
It sounds like you have a very progressive LLMD. From what I have read, a variation of this combo is killing the persister cells that keep many sick with lyme.
I know it must be very scary ruling out MS, ALS and other neurological diseases while trying to differentiate. ALS symptoms can be similar to Lyme, but ALS patients do not usually experience pain the way Lyme patients do.
MS and Lyme present with many of the same symptoms, including brain lesions that show up on MRI's (I have these as well). I am glad you are willing to try ABX to see if they make a difference.
Posts: 2386 | From New England | Registered: Aug 2011
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Not all people can stand high antibiotic doses, and in combo like you will do.
If you are among the lucky who can, great.
If not, don't get discouraged. You can try to go slow, very slow, or move to herbs or milder options, that also work IN CASE it is lyme.
Some drs. say that almost ALL their patients with ALS respond to lyme treatment well.
Posts: 6199 | From Brussels | Registered: Oct 2007
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Welcome . Creek trail starts off with roceph 4 days ,tini and rifampin bid ,and zith mwf til plateau the babs ...
i had many als symtoms and have done best following a nurse who recovered her drop foot with bvt .she works full time now
i treated parasites ,got a plasma rife ,have been doing bvt for 1.5 years .got a smart port and have pulsing roceph and zith for a year with herbs and rifampin. Alinia and most recent zhang
iv curcumin, glutithione ,iv silver ,topical and internal ooo ,ivermectin and many other herbs have proven useful
Treat bart and myco as they are hurting the nerves with borrelia. This guy says it well i think he used tini and ozone to halt his http://www.shackel.org/mytheory.html there are many ways to skin a cat . Feel free to pm me
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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