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.
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