Neurological Lyme - No Improvement

Posted by anthonymichael15 @anthonymichael15, Jun 28 8:30am

Hello to the entire community!

This is my first post. I was diagnosed 11 months after a unknown tick-bite that I had Lyme Disease. After 8 weeks of Doxy, and currently on Plaquenil/Biaxin, I have seen little improvement. Symptoms that have been persistent are: Muscle Twitching (more as of late), quick twitching random throughout body that lasts 10 seconds or less, Eye Floaters and Light Sensitivity whenever outside, Ringing in Ear, Upper Mid Back Pain, Anxiety (never had prior), and hand pain (pain when holding something for any amount of time/grip pain).

The Western Blot was positive for 5 bands (4 Lyme Inclusive) and the other 2 lyme bands were equivocal, this was enough for the doctors to clinically diagnose.

At this point, I'm not sure next steps, to re-visit a neurologist, or give it time. I'm a 28 y/o, Male, in otherwise good health. Just not sure if I should seek out any alternative diagnoses as the twitching and hand fatigue is recent.

Hello @anthonymichael15 and welcome to Mayo Clinic Connect. I can see how you are struggling to know what to do next after all you have been through.

That said, I am tagging members @kaysey @sundance6 who have shared information previously on Lyme to see if they may be able to help provide some additional information based on their experience.

I am wondering if these are symptoms your neurologist prepared you for as possible side effects and/or long-term symptoms? If not, it may be best to update your neurologist to let them know of your new symptoms and let he/she decide if you need to be seen.

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AnthonyMicheal, I feel very much for you! I did not come down with Lyme until I was 72. Having lived a very active and athletic for 72 years, it has been very difficult!
I live out in New Mexico, so we are not supposed to have Lyme!
Over the past three years I have attended many Lyme seminars online,, read thousands of pages in books and read more articles than has overloaded my brain!
Things I have learned, 1. You can get Lyme at any time in your life, and it may not appear for many years! 2. You do not have to live in the east all your life, you can do a visit and you don't realize you have been bitten. As a matter of affect, they are showing golfers have a better chance of being bitten by a tick than the average person. Two PGA Tour Pros, Jimmy Walker and Tim Herron. I am also in the golf industry and have played all over the country and the world. Problem is they spray the fairways but not the rough where many golfers end up. 3. When I first started coming down with my symptoms, it took them over 6 months to even say it may be Lyme. It was only symptom diagnosed by a very smart doctor who actually recognized it because he had studied it early on. 4. At that time there were maybe 12 symptoms? Now you read research and there are over 60! I have a friend who was from Lyme Con. and her daughter has it.
She went to a Lyme group session with her and she said of the 30 people in attendance all had different symptoms.
What you have said are some similar to some of mine. My worst were the constant headaches, fatigue, denseness, joint soreness and muscle fatigue!
My PCP would only do the Doxy for two weeks, which helped then came back. Frustrating is that it can cause the bacteria to die and then cause joint pain, I believe it's called a Herchimier Reaction, not sure of the spelling but you can look it up.
I finally about six months ago had a Heart the Heart conversation with him. What we worked out was to Journal my every day every hour so I could ID my symptoms better! I know how many hours I can push myself and when to Jump off the Merry-go-round!
I hope this helps a little!
Some people to read, Dr. Richard Horwitz, Dr. Bill Rawls are to very good sources.
There are many more current books on Lyme than there were three years ago.
You will have stages. My biggest frustration was people not understanding the Disease, in my case my family.
Know that your are not alone! For one Mayo Connect got me through some very hard times when I was ready to Check Out!
The members are so Wonderful and Blessed!
My Blessing and faith to you.
Sundance(RB)

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Hang in there I have the same thing going on it will reside Just run out the meds and wait we will get better . Barb Baker Northern MN

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Thank you all for your replies, I am hopeful this lengthy course of antibiotics will lead to some improvement and that the double vision at night will improve. It really does boggle my mind how it is not a more heavily funded disease, especially considering the long-term and debilitating affects many of us have to live with due to being 'dismissed'. I remain positive and hope to tackle those symptoms in time.

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