3 options for diagnosis/treatment

Hi all! I’m new on here, but have spent the last 1.5 years looking for answers from multiple specialists, labs, tests, and second opinions. To start, I do have severe hypermobility disorder. But 90% of my symptoms didn’t appear until 1.5 years ago when I had a bite from what the doctor said was a spider (possibly tick) in the early summer of 2017 in rural Indiana at a wedding. It had no ring so they dismissed it. Then this all started from what doctors thought was runners knee then moving onto EDS, lupus, MS, sjogrens, Marfans, and more.

(2) EEGs, EMG, MRI - normal
ANA - positive at test 1, negative at test 2
Lupus (tested twice) - negative
Lyme - img 0/3, igg 3/10 (bands 18, 23, 41)
Hormone levels - normal

Due to the previous labs and tests, my neurologist determined I have small fiber neuropathy. He is certain with this many symptoms and a normal MRI that it’s not MS, but he needs more convincing that it’s not Lyme.

He’s given me three routes for next steps:
1. See his infectious disease referral for 3 months of treatment for Lyme to see if there’s improvement.
2. Nerve biopsy for much more data.
3. Spinal tap for a *possibly* more conclusive answer.

I’m including my listed symptoms below, but if anyone has any ideas on what they’d choose or their experiences I’d love to hear. My most bothersome symptoms are the heat sensitivity and libido. Selfishly I think these are things that can cost me my relationship. I can’t leave the house in summer and go for walks, go on warm vacations, go to the beach, camp, etc. And the low libido piece is an issue for obvious reasons... At least with the pain I work through the day somehow and can still pretend to function (for now). But obviously all of the symptoms and pain and numbness i would wish away just the same.

I worry I’ll go with option number 1 and see no results and never know if I actually have Lyme or just need more treatment. My doctor believes with my neurological and nervous system symptoms that I would be late stage. I worry I wouldn’t see results and I’ll just never know....

Symptoms:
* Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
* "Brainfog"; inability to think clearly
* Seizures; seizure-like episodes (no evidence on EEGs but suspected partial temporal lobe seizures)
* Parasthesias (numbness and tingling in hands and feet)
* Electric shooting nerve pains
* Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
* Libido (decreased)
* Dizziness or vertigo
* Difficulty making and/or retrieving memories
* Touch or weight of clothing on or against body causes discomfort (like sandpaper sometimes)
* Drooping eyelid
* Eye pain
* Flashes of light perceived peripherally
* Staggering gait (clumsy walking) which comes in flares
* Fatigue
* Decreased libido
* Abnormal Extreme sensitivity to hot or cold
* Stiff neck, neck aches
* Feeling hot or cold often
* Reoccurring mild grade fever

Post Edited (Klhmed) : 11/28/2019 3:51:30 PM (GMT-7)

I’m still new to a lot of this, what do you mean by molds? How long do you expect to be in treatment? I’m glad to hear you’re responding to treatment for it!

Klhmed said...
Hi all! I’m new on here, but have spent the last 1.5 years looking for answers from multiple specialists, labs, tests, and second opinions. To start, I do have severe hypermobility disorder. But 90% of my symptoms didn’t appear until 1.5 years ago when I had a bite from what the doctor said was a spider (possibly tick) in the early summer of 2017 in rural Indiana at a wedding. It had no ring so they dismissed it. Then this all started from what doctors thought was runners knee then moving onto EDS, lupus, MS, sjogrens, Marfans, and more.

(2) EEGs, EMG, MRI - normal
ANA - positive at test 1, negative at test 2
Lupus (tested twice) - negative
Lyme - img 0/3, igg 3/10 (bands 18, 23, 41)
Hormone levels - normal

Due to the previous labs and tests, my neurologist determined I have small fiber neuropathy. He is certain with this many symptoms and a normal MRI that it’s not MS, but he needs more convincing that it’s not Lyme.

He’s given me three routes for next steps:
1. See his infectious disease referral for 3 months of treatment for Lyme to see if there’s improvement.
2. Nerve biopsy for much more data.
3. Spinal tap for a *possibly* more conclusive answer.

I’m including my listed symptoms below, but if anyone has any ideas on what they’d choose or their experiences I’d love to hear. My most bothersome symptoms are the heat sensitivity and libido. Selfishly I think these are things that can cost me my relationship. I can’t leave the house in summer and go for walks, go on warm vacations, go to the beach, camp, etc. And the low libido piece is an issue for obvious reasons... At least with the pain I work through the day somehow and can still pretend to function (for now). But obviously all of the symptoms and pain and numbness i would wish away just the same.

I worry I’ll go with option number 1 and see no results and never know if I actually have Lyme or just need more treatment. My doctor believes with my neurological and nervous system symptoms that I would be late stage. I worry I wouldn’t see results and I’ll just never know....

Symptoms:
* Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
* "Brainfog"; inability to think clearly
* Seizures; seizure-like episodes (no evidence on EEGs but suspected partial temporal lobe seizures)
* Parasthesias (numbness and tingling in hands and feet)
* Electric shooting nerve pains
* Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
* Libido (decreased)
* Dizziness or vertigo
* Difficulty making and/or retrieving memories
* Touch or weight of clothing on or against body causes discomfort (like sandpaper sometimes)
* Drooping eyelid
* Eye pain
* Flashes of light perceived peripherally
* Staggering gait (clumsy walking) which comes in flares
* Fatigue
* Decreased libido
* Abnormal Extreme sensitivity to hot or cold
* Stiff neck, neck aches
* Feeling hot or cold often
* Reoccurring mild grade fever

Hi - welcome to the forum!

First - the IgG bands 23 and 41 indicate lyme - along with the bite and subsequent symptoms - - you have lyme.

The ID docs - unless they’re lyme Literate will most likely dismiss it.
I suggest you find a LLMD or LLND and schedule an appt

I wouldn’t want the spinal tap - plus they’re generally not the best test for lyme anyway.

dcd2103 said...
Why does he suspect small fiber neuropathy? Your most severe symptoms are not nerve related, this sounds like a classic case I’d Lyme

Pardon in my explanation above of my most bothersome symptoms. Those weren’t to say what is necessarily the worst as much as what upsets me the most or in an specific order.

The SFN he also noted is what impacts heat and temperature regulation along with my nerve pains. His conclusion for this was normal EMG showing no issues with the large major nerves. The numbness, sharp pins feeling, tingling, electric shock shooting nerve pain beginning in my legs and now my hands. Issues with fabrics sometimes feeling painful like sandpaper scraping my skin.

You may want to see if you can see the infectious disease doctor and try and find a LLMD doctor at the same time. It sounds like the ID doctor might be willing to treat you at least for a couple months.