There is a wonderful discussion board on Dysautonomia... Many there have Lyme... I am one of them...
Yes there is hope for those whose Dysautonomia have come on b.c of Lyme disease....
Have you seen a Good Autonomic specialist yet?
Dr Blair Grubb at Medical College of Ohio is the best in the US..... I have seen him and he has been wonderful at helping me... Works well with my POTS DR here as well as my LLMD.... Bottom Line is yes with treatment it can get better , but you might need some meds to help as well as compression hose, electrolit/fluid increase, and adding salt to yout diet...
I hope this helps.. feel better! Posts: 437 | Registered: Sep 2004
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I can't speak for myself (still really sick with both Lyme and Dysautonomia) but I have a friend who has both and her Dysauto symptoms have improved a lot with her Lyme treatment. She has been off treatment for both for the past few months and holding her own and doing pretty well so there is definitely hope!
What kind of Dysautonomia do you have? (I have NCS and I suspect also POTS - I took my pulse today while standing in the kitchen and it was 132.)
posted
I am considerally improved after almost 3 years of abx for both lyme and babesia. I did 7 mos doxy, 10 mos biaxin and omnicef, 10 mos zithromax and flagyl, could not tolerate levaquin so only did 2 weeks, 6 mos bicillin, and now 1 mo zithromax and mepron for babesia.
Working with a good llmd is key.
Posts: 925 | From California | Registered: Sep 2004
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posted
Thank you all for the replies and encouragement. Christine that site looks very good, lots of reading for me!
I have not seen an autonomic specialist as I'm too ill to travel or have their tests at the moment. The LLMD is the only doctor helping me because in England no-one with an official diagnosis of ME/CFS is taken seriously, it is hard to get tests or treatments for anything.
At least now I have some hope that the lyme treatment may help resolve this.
Best wishes for good health to you all.
Posts: 51 | From England | Registered: Oct 2005
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WildCondor
Unregistered
posted
This is VERY common with Lyme inflammation. I contracted Lyme Disease induced Neurally Mediated Hypotension (NMH), Neurocardiogenic syncope from Lyme. It causes rapid heart rate and blood pressure drops. It happens when the Lyme bacteria inflame the vagus nerve that leads from the heart to the brain. The inflammation causes a misfire of the nerves, and the dysautonomia. A Tilt Table Test is needed to check this out, and it must be done correctly.
Most Cardiologists use Isuprel for phase II of the test. Depending on your results you may need beta blockers (Atenolol, metoprolol, toprol etc.) florinef, zoloft and or midodrine. High salt diet and increased fluid intake helps, avoiding prolonged standing, heat, dairy, lack of sleep and adrenaline surges is key. This condition brought on by Lyme, can be treated and responds well to aggressive antibiotic combination therapy by a good LLMD.
Scroll down on the Lymelinks page, I have a whole section on NMH.
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