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Muscle twitching ... lingering Lyme?

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Old 10-06-2018, 06:24 AM   #1
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Join Date: Nov 2010
Location: USA
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BabsB8 HB User
Muscle twitching ... lingering Lyme?

Lyme is literally getting on my nerves!

First...Cliff notes to my Lyme story:
December 2013 sinus infection plus pink eye turned into full blown dry eye syndrome. Used OTC drops per eye dr until my OBGYN of all people started me on Restasis. March 2014.. fatigue set in - felt like I had the flu all the time. April 1 - bright red streaky rash appeared on forearms and my chest look sunburned although I didn’t have enough sun exposure to explain this. Rash became violent and spread to my face and shawl area while at the same time my leg muscles became so painful and weak I could hardly walk. Muscle weakness spread to arms and jaw. I felt breathless and fatigue was unbearable that even taking a shower was a major chore. Family dr was convinced I either had Lyme or Dermatomyositis. He immediately treated me with 60mg prednisone for the scary rash and Doxycycline in case of Lyme. Lyme blood test came back “equivocal” or borderline. Continued Doxy for 4 weeks. Had every test imaginable under the sun by rehumy, neurologist and rule out biopsy looked like DM so started Plaquenil. Rash and muscle symptoms began to improve by June. By July Rheumy wanted muscle biopsy to confirm DM but I was getting better so I said no and fired her. She should have done that 1st thing in April when I was at my worst. Weaned myself off prednisone and stopped plaquenil = major hairloss...but it grew back! Stopped Restasis when I used prednisone and dry eye syndrome has never returned! Saw a homeopathic dr in July who confirmed Lyme (I know this is not LLMD)...he gave me remedies for Lyme. I continued to improve. By April 2015 the next year I was at Disney World and buying a new house and remodeling. But symptoms remain and I believe it is lingering Lyme...

Since 2014 I have experienced:
Currently suffer from something similar to lichen sclerosis, but not severe and no itching
Rectal bleeding
Ice pick headaches lasting for weeks
Electrical nerve sensation in legs and face
Random sensation of one foot getting hot (but wasn’t hot to touch)
Eyelid twitching for several months
Random muscle twitches it is my right calf that has been twitching almost constantly for an hour. Sometimes my left fingers will twitch and they move on their own.
Muscle weakness and tremors like I’ve maxed out...probably due to severe muscle damage when I had DM symptoms...I would like to get back to gym to gradually strengthen my muscle because I have the maxed out feeling when I try to do activities I love like gardening and hiking....walking is fine but climbing and frequent bending/squatting is what gets me.
I also have reactions to every single class of antibiotic available...I always breakout in a greasy pimply rash on my face and neck 🤷🏼‍♀️ Dr’s are reluctant to Rx them to me If I need one for occasional strep or sinus infection.

I think it’s interesting that Lyme has tried to disguise itself as 3 auto-immune conditions with me: Dermatomyositis, dry eye syndrome (Sjorgen’s), and lichen sclerosis. I think the LS will also go away but then it will be something else I’m sure.

Anyway...I seem to have so much nerve/muscle involvement still. What do you all recommend as far as a food plan (foods to avoid), supplements, activities? I have been in denial that this is lingering Lyme. But I’m starting to get back to taking care of my health to overcome this. Lyme is literally getting on my nerves 🤨

Last edited by BabsB8; 10-06-2018 at 06:30 AM.

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