Need Help

I have so many questions. I have had many neuro symptoms for possibly 10 years and the last three have been terrible. Crushing fatigue, muscle weakness, muscle spasms, muscle cramps, hypersomnia, insomnia, sleep jerks, incredible leg aches that start in the a.m. and go all day, 30lb weight loss, tremors all over legs and arms, painful eyeballs, flu like symptoms, nerve pain in teeth and fingers and toes, occasional trouble talking (like I just ate a Popsicle) and even a scar on my retina. I have seen a neurologist who did an MRI which showed nonspecific white matters in both hemispheres big insists it is not MS. My weakness, tremors and exhaustion have become unbearable. I should note that my left side is far worse than the right. In 08 I had an Igenex Lyme test done that was positive for IGM. The doctor hit me with whopping doses of Abx but didn't follow up so I let it go. My question is, are the Igenex tests reliable? I have started oral doxycycline 400mg on my own for about a month and I don't really notice anything. Does that mean I don't have Lyme? Do you have to herx? My GP wants me to see a LLMD in DC who he said is the best, for evaluation. Don't know if I should go. Any advice or insight would be appreciated.

Post Edited (tennessee65) : 9/4/2015 6:42:03 PM (GMT-6)

Hi Tennessee!
Welcome!! I'm so glad you joined our community!

Sounds like you are experiencing the same symptoms that these infections produce!!

Yes, Igenex tests are about the best in the country. None of the testing is all that good, but if you get a positive, then you definitely have Lyme!

No herxing is NOT necessary. If your detoxing pathways are functioning well, then you may not herx.

Since you figure you have been infected for likely 10 years, and you have these symptoms, then no, one month of Doxy will not be enough. And you likely have other infections as well as Lyme rarely travels alone.

We always suggest that people see a LLMD that has been ILADS trained!! So if the doctor that your GP is suggesting is ILADS trained, I would greatly encourage you to go and get treatment from that LLMD!!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​

And keep asking questions!! The learning curve on these infections is pretty steep!!! We can likely be a big help.

It's all in who you are talking to as to who's the authority on Lyme, to be completely honest.

And as you said, we are all different, although when I first joined this community, I was concerned because I didn't have most of my symptoms on one side or another!

And I had seizures and tremors, but not all people with Lyme do.

I'm glad you're going to take advantage of getting an appt with that LLMD. If he's been trained by ILADS, then I would be very surprised if you aren't diagnosed with Lyme disease, then you can get on with your healing.

My first symptoms were radiculopathy on my left side only. Originally diagnosed with radiculitis by my GP and Thoracic Outlet syndrome by my chiropractor.
MRI's showed no evidence of a pinched nerve.

Soon after those symptoms, many more symptoms were stacking up.

My nerve pain, stiffness and weakness is primarily on my upper left side (shoulder blade, arm, hand, fingers) My face was only numb and sore (around the jaw area) on my left side. And, in fact, today at my dental cleaning, some teeth on my left side - the gums have recessed...they were unchanged on my right side. The hygenist compared her chart notes from prior to having lyme.

Both legs became weak and shaky - but worse on my left side. The pain in my ribs - only left side.

Some things are both - foot pain, knee pain, top of shoulders pain - to name a few.

I also had tremors on my left side (hand) , but not my right.

Lyme symptoms are different for everyone...

Yes, Neolyme - treatment has helped with my face/jaw problems.

It is one symptom that is pretty much gone.

Every night when I went to bed, after laying down for a few minutes, my left side of face around the jaw area would start tingling and buzzing and sort of numb feeling...and also hurt.

During the day the tingling/buzzing/numbness would leave but it would still hurt - but not as bad as at night.


Since I started the treatment for bartonella, my jaw on the left side has been a bit sore on occasion - but no tingling/numbness/buzzing.