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Looking for Neurologist Referral

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Lyme Disease
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Kitfox
New Member
Joined : Jun 2022
Posts : 6
Posted 6/28/2022 11:07 AM (GMT -7)
I recently joined this Support Forum and am looking for support and help for my husband who is currently being treated for active Neurological Lyme Disease and Co-Infections.
Some background:-
He had always led an active athletic outdoor lifestyle and in October 2016 developed upper back and neck pain and unusual tiredness. By 2017 he had severe hip joint and muscle pain and saw at least 3 doctors for this who had different opinions about cause, including muscle tear & labral tear. He had 3 months of PT and symptoms didn't resolve. 2018 into early 2019 developed pain in hand joints and intermittent tremor in one hand, neck pain and hip pain continued. During 2019, the intermittent tremor progressed to daily and he started to have difficulty with fine motor movements using right hand. Other symptoms in 2019 included debilitating fatigue, stutter & trouble with speech, overreaction to heat and cold with cold bringing on full body shaking and heat bringing on panic and anxiety (with no prior history), trouble with sleep, internal discomfort/tremor, trouble with gait and balance mainly on right side.
In January 2020 he was diagnosed with Parkinson's Disease based on visual presentation of symptoms. He had no testing or suggestion of other conditions that could be causing symptoms. During 2020 and into early 2021 the symptoms continued to worsen.
In May 2021 he went to a Functional Medicine doctor who carried out many tests including a Tick Borne Illness Panel. Tested positive CDC criteria for Lyme Disease including Burgdorferi, Afzelii & Garinii and other co-infections.
Started treatment first for fungal infection, then antibiotics and herbal treatments. He is currently using herbals, other therapies and many supplements. He has to go very slowly as he has severe herx reactions to even the slightest increase in treatments, part of the reason for taking a break with the antibiotics after 4 months.
He has had some improvement in some of his intense symptoms of internal discomfort and panic, these symptoms were daily and increased when he tried to lie down causing panic, anxiety and a need to move around. Sleep has also improved since treatment began though still not good and speech has improved.
I feel that the treatments he is on are taking him in the right direction and the gradual improvement of many of his symptoms is promising. However, the use of his right hand and issues with gait have not improved and have worsened in the last year. Our Lyme doctor has talked to us about the triggering of autoimmune conditions and neurological conditions and has suggested we see a Neurologist who can do further testing. I am looking for a neurologist that specializes in Lyme disease, autoimmune and neurological conditions to help us with where we go from here. Should he also be seeing an infectious disease Lyme specialist and/or Rheumatologist specializing in complex Lyme? Any suggestions are very welcome. We are in NY looking for specialists out of the City but happy to travel. Thank you
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Girlie
Forum Moderator
Joined : May 2014
Posts : 46798
Posted 6/28/2022 12:45 PM (GMT -7)
Welcome to the forum kitfox.

Re: should he be seeing an ID doc?

“ I am looking for a neurologist that specializes in Lyme disease, autoimmune and neurological conditions to help us with where we go from here. Should he also be seeing an infectious disease Lyme specialist and/or Rheumatologist specializing in complex Lyme? Any suggestions are very welcome. We are in NY looking for specialists out of the City but happy to travel. Thank you”

You don’t need a rheumatologist specializing in lyme (IMO)
Before I knew I had Lyme - I went to the rheumologist - and he ruled out all the autoimmune diseases.
But I didn’t know at that time that I had Lyme disease.

Also you don’t need an ID Dr to treat you for Lyme disease.

You will want a LLMD (Lyme literate dr) - whether he/she is a “regular” MD or an ID doc - what is most important is that they are Lyme literate.

You can email me - I can check my list of LLMD’s and send you some options.

Also - if you do want to see a LL Rheumy - I may have one on my list.
I can also check my list for a LL neurologist.
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orbitingaround
Regular Member
Joined : Sep 2019
Posts : 286
Posted 6/28/2022 1:52 PM (GMT -7)
There is really no point in seeing a neurologist -- your husband has Lyme and co-infections and he needs a LLMD. I saw 4 neurologists and they all misdiagnosed me, put me on steroids (poison), and wanted me on Gabapentin and other horrible drugs.

A LLMD can order a brain MRI anyway. I have a ton of brain lesions from Lyme and Bartonella, but so what? I already knew it was neurological.

You just need to treat the Lyme. I wasted thousands of $$$ on brain and c-spine MRIs over the years -- that money is better spent on Lyme treatment.

Whatever you do, make sure he DOES NOT get a spinal tap! It is pointless and dangerous. Any neurologist will push it though.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 46798
Posted 6/28/2022 1:58 PM (GMT -7)
“ Whatever you do, make sure he DOES NOT get a spinal tap! It is pointless and dangerous. Any neurologist will push it though.“

Totally agree!
It won’t change the treatment anyway!
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Kitfox
New Member
Joined : Jun 2022
Posts : 6
Posted 6/28/2022 1:58 PM (GMT -7)
Thanks for the quick reply Girlie,
Our current Functional Medicine doctor is Lyme Literate and we're happy with how the treatments with him are progressing. He offers AB's, herbal treatments, and other therapies including HBOT, Peptide Therapy etc. and my husband has definitely made some progress with many of his symptoms in between the setbacks with his treatments to date.
But because he hasn't seen any improvement with the movement issues, we were thinking Rheumatologist but it sounds as if LL Neurologist would be the next step. I would appreciate any names you could give me for neurologists.

Did you also have movement issues before your Lyme diagnosis?
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Girlie
Forum Moderator
Joined : May 2014
Posts : 46798
Posted 6/28/2022 2:02 PM (GMT -7)
I had tremors in both hands - but worse in the left hand (everything was worse on my left side of body)

I was very weak - but for me the pain was the worst.
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Kitfox
New Member
Joined : Jun 2022
Posts : 6
Posted 6/28/2022 2:09 PM (GMT -7)
Thanks Orbitingaround
My husband was given steroid injections for the hip pain which didn't help the pain at all and probably helped the Lyme take over more.

A previous brain MRI he had in January 2020 did show brain lesions which looked similar to MS on the MRI according to the neurologist but Lyme was never considered as a cause.

Thanks for advice on spinal tap.

Are there any specific herbal treatments or other therapies which you think would be good to directly address the movement/weakness/tremor issues

What is working best for you treating your neurological Lyme?
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Girlie
Forum Moderator
Joined : May 2014
Posts : 46798
Posted 6/28/2022 2:12 PM (GMT -7)
Getting a good night sleep was key in the beginning.
I was waking up in a panic every few hours gasping for air early on.

It improved with treatment and time.
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Kitfox
New Member
Joined : Jun 2022
Posts : 6
Posted 6/28/2022 2:25 PM (GMT -7)
Thanks for replies,
My husband had panic, and feeling he couldn't breathe every time he tried to lie down for months before and after starting treatment, he would spring up and need to run around the house every couple of hours. This has improved with treatment but it comes back whenever he increases a herbal/herx's. It also still comes out with stress or with heat.
He was first treated for Candida before starting Doxy and Azithromycin in July 2021. Is this still early for this symptom to get better?

How long did it take for you to see improvement with the panic?
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Girlie
Forum Moderator
Joined : May 2014
Posts : 46798
Posted 6/28/2022 3:51 PM (GMT -7)
“How long did it take for you to see improvement with the panic?”

I don’t recall exactly.
It was after I started the abx.
I know it was better a year later because I went away for a weekend with a friend and it wasn’t happening then.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 46798
Posted 6/28/2022 5:38 PM (GMT -7)
I’m not at home now - send me an email - and I will check my list for a LL neurologist when I get home
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