Lyme disease and neuropathy

@aeg73 @cbrackle @dancermurphy @rita8898 @tdemaria Here is some information that might be helpful about Lyme Disease.

The Western Blot test is not very accurate and does miss diagnosing Lyme Disease. That is a costly mistake to make if Lyme Disease goes un-diagnosed for years. The doctors who are the experts at treating Lyme are in the ILADS group. The Igenex lab has more accurate tests. https://igenex.com/ Lyme destroys white blood cells that are your immune system.

Here is a link to ILADS (International Lyme Disease Association). https://www.ilads.org/patient-care/ilads-treatment-guidelines/

Here is the Lyme treatment guideline
https://lymediseaseassociation.org/wp-content/uploads/2009/08/BurrGuide200810.pdf
There is an educational documentary call "Under Our Skin" which profiles several patients and their treatment and controversy about Lyme. https://underourskin.com/

Here is a link that discusses ILADS antibiotic recommendations and for recommended number of days, scroll until you find it.
https://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900
Exercise helps because it raises the effective oxygen perfusion rates in your tissues, and oxygen can be toxic to bacterial infections. Getting your Vitamin D levels optimized helps because that increases your immune system response.

May I ask what Lyme tests you had done/taken? I too had two negative tests; one Western Blot through Arup Lab and a Lyme anti-body through Quest both said negative or number below a positive result. I recently had a Western blot through Quest this time and it showed reactive Lyme bands so I am getting a private Lyme test that included all CDC bands plus the 9 extra bands. Hoping to get more info from that one. Getting on Doxy in the interim. Hope you get some answers, it's a complicated process.

Do you mean exercise prior to testing yields better results or just in general to feel and get better?

I was diagnosed with idiopathic P.N. a number of years ago. I have always wondered if the cause could be from deer tick bites. Tests were done, and came back negative. I still wonder. I have lost feeling in my feet, legs and hands. Now my knees and knuckles are stiff as well. Does anyone have experience with this. There is a clinic that looks into diseases spread by ticks located near me, but I'm wondering if it's worth the price? It's not covered by my insurance. Thanks.

Hello @christine71. I thought it may be helpful to bring in a few other members who have mentioned Lyme's Disease to see if they can share their experience with diagnosis to help you make your decision on what should come next for you. Members such as @cbrackle @sherlock @aeg73 and @cwallen9 may be able to rejoin this conversation and connect with you.

As well, you will notice that I have moved your post into an existing discussion on the same topic that you can find here: https://connect.mayoclinic.org/discussion/lyme-disease-and-neuropathy/

It may be beneficial for you to read past posts by members as well.

While we wait, here is some additional information on diagnosis and treatment that you may find helpful.

- Lyme Disease:
https://www.mayoclinic.org/diseases-conditions/lyme-disease/diagnosis-treatment/drc-20374655
Do you know what type of test you were given?

I am currently seeing a neurologist about a year ago I found a tick in my bathroom I must have stood on it there was a lot of blood on the floor and when I investigate it I realized it was a tick I live in a heavily wooded area and we have around 200 deer last poa counted I have UMN and LMN issues could I have LD

I am not a specialist at all; I have just spent my life from 2001 - current researching Lyme disease. I have Lyme disease, and I had it for close to 10 years before my body started shutting down and I was diagnosed. So, it was left untreated for almost 10 years. There are 2 Lyme tests that need to be done. The first one almost ALWAYS comes back negative. Even though I have done several rounds of antibiotic treatment, I still test positive, just not active. For me, I can tell when a flareup is coming because when I wake up in the morning the cartilage of my ears hurts so bad I don't want to take them off of the pillow. I have constant muscle spasms and my muscles don't even relax when I'm asleep. I have chronic pain, constant migraines, and some that are debilitating, I have stenosis now, brain fog sometimes, and you guessed it, neuropathy (which is the newest symptom for me). It seems since I had COVID earlier this year it just teamed up with the other symptoms I already had.

The disease is very tricky because each person's experience is different. I heard someone say it is like a fingerprint. There is a documentary called The Quiet Epidemic 2022, and another called Under Our Skin 2008. There are a bunch of Dr. and specialists that upload videos to youtube that have also been helpful.

Best of luck!

i saw Under our Skin. Explains why conventional Medicine is in denial it even exists.

I was diagnosed in 2019 with Lyme and Babesia which are two tick borne infections. Symptoms were whole body burning pins and needles, muscle weakness, fatigue dizziness and brain fog. Took over three years to feel better. My provider was a Integrated Functional Medicine PA and the treatment was herbal extracts and Gabapentin. The symptoms now are painful neuropathy in my feet, hands are swollen but still whole body inflammation. So I not sure if it’s full blown Lyme again or widespread neuropathy. Insurance doesn’t cover any Lyme related expenses.

Thank you John!!