Posted 4/20/2016 6:24 PM (GMT -6)
I am a new member of HealingWell.com. I was diagnosed with Parkinson’s on December 18, 2015. But that is only a small part of my journey. Between January 2012 and April 2014, I developed health issues including but not limited to: organ pain; terrible anxiety attacks; rapid heartbeat; chest and chest wall pain; sharp pains/numbness in temples, head and neck; progressive pain in joints (mostly fingers, hips and legs); shooting pains in wrists/arms/left leg shin; depression. I saw multiple doctors, had multiple labs and invasive tests done and they couldn’t come up with anything. Around May 2014 I started developing neurological issues including hand/leg/foot tremors and twitches on the right side, head tremor, right foot’s toes curled downward, difficulty with gait/walking, off balance, difficulty remembering things, lack of concentration. By January 2015 I was out of my mind and desperate but had no answers. In April 2015 a friend of mine called and said that she had been sitting next to a woman in her doctor’s office that had almost the exact same symptoms as me. The woman told her she had Lyme Disease and that I needed to go find a Lyme Literate doctor (LLMD) and get tested with the IGenex test immediately. I explained that I had been tested for Lyme by my doctor with the standard test but the woman told her that that test is notoriously inaccurate and that IGenex was the only Lyme test to take for a true answer. I did as I was told and poof, after 3 long years, I found out the culprit was Lyme Disease. Very bittersweet.
I found a naturopathic doctor that treated Lyme and he put me on a regimen that helped with a lot of symptoms but my neurological issues continued to progress. In December 2015, I decided to go to a neurologist as my Mom has Parkinson’s and I wanted to hear what he had to say about my situation. Note that my tremor doesn’t always fit the classic Parkinsonian profile which left me with further questions in my mind. The neurologist diagnosed me with Early Onset Parkinson’s (I’m 50). I told him about the Lyme and he said that sometimes Lyme can ‘switch on’ a Parkinson’s gene and you start getting symptoms. I went home stunned. Once I got my head together, I asked for a genetic test to prove that the Lyme had mutated the gene that I maybe or maybe didn’t have and to my surprise he agreed. I received the results back from the geneticist and although I do have the Parkinson’s gene, it had NOT mutated. This brought my chances of have Parkinson’s at this time down to a fairly low level. The geneticist questioned whether I had been misdiagnosed. My neurologist has asked me to do a DAT Scan just to be sure and I’m on the fence about doing it at this point. My mind and my heart know it’s Lyme.
I have learned sooo much about Lyme Disease in the last year and I learn more each week, mostly out of necessity. Two things I want to point out that are very applicable to this post: 1) Lyme is described as ‘The Great Imitator’ as it mimics many other diseases such as ALS, MS, Parkinson’s, Lupus, Fibromyalgia and a host of others and 2) people bitten by a tick (which most people have no memory of) get their own personal ‘pathogen cocktail’ which can include not only Lyme but co-infections also. Sometimes the co-infection bacteria are worse than the Lyme. It also explains why some people get some symptoms and others get a different set of symptoms.
So here is why I’ve written this lengthy tale (sorry)….if you question whether or not you have Parkinson’s, I implore you to find a reputable LLMD and get the IGenex test done. It will not be cheap. Lyme is a very controversial disease and a lot of LLMDs won’t take insurance…that is another long story in itself. But at least you will have another piece of the puzzle. I’ve read several posts from folks that list their symptoms and they are so Lyme-esque I can’t help but write this post. I’m not trying to give false hope (and Lyme is it’s own heinous disease) but it could be worth the time and money to find out for sure.
I also suggest that you look at the Lyme forum on HealingWell.com and ask some questions. There are a lot of very knowledgeable folks on there. Use their knowledge and then set your course.
My last thought is, whether you have Parkinson’s or Lyme or any other disease, BE YOUR OWN ADVOCATE. Ask questions to anyone and everyone who might know something valuable. Learn everything you can and leave no stone unturned. All my best thoughts and hopes for you