Running out of ideas...does this sound like Lyme disease to you board members?

Hello to everybody - this is my first post on a Lyme disease forum, I'm reaching out for any advice and help, similar cases etc.

I have not been dx but have just completed a month's antibiotics (oral doxycycline) based on a positive test for exposure to Lyme disease. This, even in the words of my neurologist was based on "seeming reasonable" rather than definitive. My blood test was done twice, the second evaluation was a Porton Down in Hampshire, I believe a specialist centre.

My symptoms started 2 years ago -

Muscles tire very quickly - my arms will remain very stiff and sore for days after just something like half an hour of gardening and holding shears etc. The first thing that made me take notice was my excessively shaking arms after gardening.

Minor tremor in arms - not enough for the neuro to agree is action/intention tremor.

Painful soles - builds up fast if I am on the spot a lot rather than walking continually - the first thing I sought advice for. This just feels like I have been on my feet for days rather than minutes.

Twitching, especially in the calves but can be anywhere from scalp to soles, also buzzing in the muscles

Excessive sweating - cleaning the house can have me dripping.

Burning in my legs and feet, random, sometimes one shin, sometimes both legs, bearable but concerning.

Cognitive issues - word finding, speech fluency, occasional handwriting issues, slurring

Stocking and Glove peripheral neuropathy pattern in my hands and feet - too dry one day, waxy the next, cotton wool texure another etc.

My voice is weaker than usual, permanently hoarse, I feel like I need to clear it before every time I speak. Its a relief outside of work not to have to talk and continually repeat myself to people.

My libido has declined substantially in the period although has been in decline for a few years prior to that.

I also have tinnitus in both ears, and intolerance of sudden noise and generally a low attention span although I can function at work.

Previous to the last few years I have also had a bout of IBS and have had herpes simplex for 8-9 years, the severity of which increased with all of this.

Clinical findings to date -

Normal cervical and spinal MRI - a few "non specific white matter lesions" on my brain MRI.

Normal lumbar puncture

Normal visual evoked potentials.

Normal reflexes, tone, power and sensation (at least by Neuro examination)

Normal chest X-ray

Other than the positive lyme serology I have normal bloods - multiple and numerous tests have returned nothing else including voltage-gated potassium channel antibodies

My initial EMG was normal, the second returned with "a degree of neuromytonia". I've forgotten the name of the nerve conduction test that wired my head to my arms and legs (SSEP's?) but this was normal.

The antibitics have had no effect and I have no obvious exposure to Lyme via a rash or having been in hotspots - I am in the UK in Surrey. That said I know Lyme is worldwide and there are deer living at the bottom of my garden so I doubt it should be necessary to have lived in the New Forest like a hermit.

I am seeing a very highly respected neurologist but I feel like no-one really has a clue and I don't know where to keep pushing this for answers. Clearly things are progressing with symptoms, this year the burning began and is progressing.

Does anyone think I should push for co-infections to be tested? I am suspecting I am about to be written off as idiopathic neurology case or a wait and see approach which I wouldn't mind if things seemed stable.

Thank you - I intend to raise the issue of batonella and babesia at my next Neuro follow up in about a month.

I am also wondering whether to request a consultation with a LLMD - am not sure how the general neuro I am seeing will take that request i.e. if he will see that as an affront to his knowledge and investigations to date. He's certainly a good guy and highly respected in his field.

johnj7b7r6—

Good posts and advice already. But to answer your question about a consultation w/ an LLMD—YES. You need a lyme specialist. 95% of general practitioners do not have enough knowledge about lyme. I'm sure your physician is a good doctor, because he does what he knows how to do well. But asking all doctors to know about lyme is like asking a sculptor to fly a plane. I don't agree that they should not be educated about it, but it is our reality right now.

Also, it's likely you don't need his recommendation or permission to see an LLMD, since most LLMDs don't participate in insurance plans. Bittersweet, since you don't have to offend or go through anyone but it is costly. Personally, I don't feel anyone should ever by shy about discussing other specialists with their doctors—this is your health and nothing is more important and if your doctor doesn't recognize his limitations or support what is ultimately best for you, then is he the right doctor?

Regardless, it is a little challenging to find LLMDs these days—the "welcome" thread explains this but you could post a new thread with a request for LLMDs near your location in the title.

Hope this helps—

-p