Lyme Disease Support Group

Earlier my pain went from my spine to my neck to my left shoulder all within a minute. Then I had a brief moment of knee pain. Then I had shooting pains all over and eye pain, ear pain. Then both of my arms went numb. Had some finger pain too.

I'm not being treated right now and don't see my doctor until Wednesday. I'm getting worse by the day and here in Canada, doctors don't belive lyme exists so I'm expecting my doctor to tell me either I have MS or arthritis or something else. Could it be something else?? Someting else wrong with my spine? I only started getting the spine pain a couple of days ago.

I seriously feel like I'm losing my mind.

I had serious back pain that became excruciating when I laid down, especially when I tried to turn over in bed.

I do have Lyme, but in that particular case it was caused by the statin drug I was taking for cholesterol. I stopped taking it, and the pain was almost completely gone in 3 days----vanished in a week. It's something to consider if you're taking any cholesterol-lowering meds.

About finding a doctor in Canada....have you visited CanLyme.org? I'm not sure, but you may find something there to point you in the right direction.

I know it feels like you're losing your mind. I hope it helps a little to know we're all right there with you.

Good luck.

I also have back pain. My neck and shoulders hurt all the time and when I lay down it is like the pressure of my body causes the pain to get worse. My doctor told me that it is from fybromyaligia caused by the lymes. I take lyrica but it does not releive all the pain. I went to another doctor trying to find someone to help because I feel that I am losing this battle, He said the best thing that I can do to deal with the pain and soreness of the body is exercise and swimming is the best thing to do. I have been at it for a week now and have not seen any change but he said it will take a while and not to give up.

You might find that trying to get PT (physical therapy) may help some of the pain. I have FMS (Fibromyalgia) thanks to Lyme, as drake does. However, my doctor's suggestion is NOT exercise, it's physical therapy and taking it a little easier. Exercise makes my pain worse. I use what's called a TENS unit, which is similar to the e-stim units they use at PT, to help stimulate the muscles to work properly. It helps make things better. I also use heat therapy. Icing makes my pain worse. Laying down doesn't make my pain worse, but from what you've described, I do believe your pain and mine are very similar. It sounds like nerve pain.

I also take gabapentin (generic for Neurontin), which helps significantly for my nerve pain. I take skelaxin, which is a muscle relaxer, and I use Valium for break-through twitches. I'm currently in a flare, and I'm having to use valium and even some vicodin to help with the pain and twitches that are occurring. PT is more difficult, but it's helping. The exercises they teach during PT are stretching and strengthening, not actual work-out type exercises. You only exercise when you can move around without having to use a cane or other supportive-type tool.

Also, to answer your last questions, the damage can be permanent if you don't care for yourself, but nerves are designed to regrow. If you take care of yourself and take your ab's appropriately and get the care you need, they should regenerate. It's not a guarantee, and some damage may be permanent, but if you do get the appropriate care, you should be able to live a good life after this is over.

The other issue you haven't really addressed is that you may be herxing, which is a detox-type situation. You often feel worse on ab's, especially initially, and when you increase ab's, because you experience a type of detox, where the bacteria are killed in force. They produce a sort of toxin in your bloodstream, and you have to filter it out. Once you filter them out, you'll feel better. It's really important that you're doing something, and often more than one thing, to support your liver/kidneys/adrenals and your immune system to fight those toxins. That's what you're reading when you see people talk about detoxing with regards to Lyme. You need to be detoxing. You can do any number of things to do that with--just take a look around the boards here for ideas of what people do. One thing is teas, one thing is just drinking a ton of water, and other things are taking certain supplements. But that's usually a very important part of people's treatment.

If you aren't on ab's--you probably need to be. It may be that you are experiencing a resurgence of the Lyme going nuts in your body. They love to reproduce! And your nerves are an excellent place for them to take hold, as the CNS is a great place for them to hide and enjoy. It's very friendly to them--and it provides access to the brain, their favorite place to hide. So, from what you've said, if you do have symptoms of Lyme, and your doctor comes back and says you have MS or lupus or something else--find an LLMD. That's my advice.

Good luck to you. Hugs,

Jen

Good luck with your Dr. search and if all else fails...You can come to the U.S. and see an LLMD since we have to pay for that out of pocket anyway!!

I would love to go to the US for treatments but I just can't afford it.

I'm going to go check out twitter for that lymelove. Thank you yokelfamily for telling me about her.