Lyme Diagnosis (Clinical Diagnosis) vs. New Onset of Symptoms

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Jun 30, 2021
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Hi Everyone,

Thank you for your extremely supportive forum and also the lengthy post describing items to read prior to posting. After doing so, I wanted to be brief and describe below a health timeline and ask your opinion for next steps and whether I should pursue a new opinion for alternative diagnoses:

- 9/2020 - Eye strain/Sensitivity to Light/ Halos/ Double Vision at Night/ Eye Floaters
- 10/2020 - 3/2021 - Continued Eye Issues and Visits to Neurologist, ENT, Two Ophthalmologists, and more rule out all visible illnesses.... Finally ask for a Lyme Test which comes back Positive ELISA, Negative for Western Blot (4 Lyme Specific Bands, 3 equivalent).... referred to Infectious Disease doctor who clinically diagnoses me.
- 8 weeks of Doxy, followed by Plaquenil/Biaxin, and minimal improvements, if at all. Tinnitus, L. Sensitivity, Knee Pain, Anxiety, Eye Issues, remain.

In May 2021, I began having muscle twitching which was not present at anytime prior to the LD diagnosis or during the onsets of symptoms. Happens if I stretch, at rest, randomly, etc. Usually lasts anywhere from a few seconds upwards of 20 seconds all throughout body, knees, biceps, lower lip, etc. Always in a single spot at a time. The twitching is visible.

In the past three weeks, I also noticed that both my forearms and hands feel strained quickly when doing any type of specific activity, such as gripping a gas pump, steering wheel, rolling a towel, or holding anything in an extended position (both arms). I have strength to curl weights, but both arms/wrist become strained when doing more dexterity based activities [even holding my hand in a specific position when typing will result in forearm strain]. The same can be said for my fingers, I feel more pain in the joints than I ever have prior.

I also have upper back tightness for months along the spine, and a slight feeling of something in my throat when swallowing (no pain).

I'm a 28 y/o male who has never had any health issues prior to the Lyme Diagnosis.

Do you believe the new onset of twitching/muscle fatigue/strain could be a result of Post Treatment Lyme which has not improved, lingering effects of the antibiotics, or possibly cause for further evaluation?

Thank you so much to all who support one another here and allow the open discussion. Be well.
Could be any or all of the above -- the drugs you have taken can certainly cause lingering effects, but Lyme itself generally does not pop out with a new cascade of problems after >8 wks of abx/immunosuppression -- so my advice would be to see an internist unaffiliated with your ID doc, who can work you up from baseline. If that person doesn't see anything worth diagnosing, I would consider therapeutic massage and attention to nutrition, exercise, hydration, and sleep.

What I can say is that I don't see ALS in any of this.

Goodness, I'm sure you don't have ALS anywhere on your radar. I think you also know this because you read the READ BEFORE POSTING thread and it should have reassured you.

This is an ALS forum, we are totally focused on this terminal disease. It is not a lyme forum, it is not a general health forum. It is not somewhere to discuss health concerns. This section has one purpose - for you to ask if your issue sounds like ALS. Two senior members have said, no it doesn't.

Great advice above from lgelb - work with doctors as whatever you have is so likely to be treatable if you let them work through this. Being here is really not going to be good for you.
I'm sorry you're experiencing these health issues Anthony. Laurie gives good advice and Tillie's right... this forum isn't the best place for you to work on getting to the bottom of this. I'm sure there's a Lyme Disease forum or two out there where you'd be more likely to find people sharing your dilemma.

I'd encourage you to be very careful if you continue to consider Lyme Disease remedies. There are some real quacks out there, false negatives/false positives, chronic Lyme proponents (LLMDs) pushing long term antibiotic infusions at great expense, etc. Typically, you need to start your antibiotic regimen soon after a tick bite for it to be effective. Starting doxy in March after first noticing problems in September isn't likely to have much effect. A typical doxy treatment should last for no more than a couple weeks. 8 weeks is excessive, not to mention piggybacking it with Plaquenil/Biaxin for however long that went. I have to imagine it is possible some combination of COVID, Lyme, and excessive antibiotics (and who knows what else) could be contributing to your ongoing challenges. See an internist, and perhaps a functional medicine specialist (offering a more holistic approach to medicine), try Laurie's suggestions at the end of her post, and chat with folks on a forum discussing less dire health concerns than here.

I hope you figure it out soon. Take good care...Jon
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