Neurological Lyme Problems with hesitant doctor

I am a very hard working guy, independant and successful. It was unfortunate to get this disease. I got it while volunteering my time helping City Year clear a path (cutting down trees and moving them) for a New Hampshire community.

I have gotten bite last year (2007) at the end of summer. I have been treated 3 times, doxycycline (30 days), Rocephin (28 days), then back to doxy (30 days). I have only seen relief in the first treatment of doxy and it was only in the first 3-4 days. I’m getting frustrated right now, because I feel like my doctor is not doing a great job. It seems like he is getting frustrated with me and maybe not be believing me anymore. I have moderate to sever pain from my neck all the way down to my heel of my foot. I also have a soar neck and back as well as sever headaches. All of these symptoms reside on the left side of my body. My left leg gets fatigued quickly and is not as strong as the right. I have concentration and memory issues, as well as sleep problems; I recently have been needing naps around 5-6pm that last 1-2 hours. Also I have gained about 15 pounds in 2 months, and haven’t really changed my diet.

My doctor is helping me, but he seems to be slow and uncaring; and possibly be giving me a run around. I have been reading a lot on the internet and it seems like time can be very valuable with Lyme and not to waste it. It seems like I’ve been getting more answers and help from the internet then from him. I have asked for a long term treatment of antibiotics, but he laughed at me and will not consider it. I have talked to several of my family members and friends, and it seems like I am leaning toward changing doctors. He thinks my pain is not related to Lyme and is more of a sciatic nerve problem; he seems resistant to hear about other pains I am having other than my leg. I have gotten an MRI on my lower back that shows I do not have a sciatic nerve problem. I went to a pain management specialist last week and he has referred me to a neurologist for a spinal tap, brain scan and some other nerve test. Although this pain management specialist couldn’t help me, he seemed to be more understanding, and have a better answer for me than my normal doc did. My question is what can all these tests show? And what would you do with all this information? I say lets skip all the bull crap and get on with the treatment.

I am taking Percocet for pain which is helping a little, but doesn’t seem to be helping enough. I have asked to try something else but my doc seems resistant. He prescribes me 4 per day and I have been taking 5-6 per day; I told him I need something more, but he is resistant. I am thinking that he doesn’t believe me or something because he is making it very difficult for me to get relief. As a result, the past couple of days, he has been making me come to the office everyday to pick up a prescription for 4 pills so that I will not take more than that. I have no history of any kind of drug abuse or problem and no family history; but my doctor is making me feel like I do.

I think one thing that is working agianst me is that i am telling my doctor of some excercise activates I am doing to stay active. I told him I ski and try to bowl once a week, and also fly kites. I am trying to lose a little weight and am trying to find out what excercises I can do; but he says if I am doing that I dont need pain killers; which in reality the pain killers are helping me do these activities. I am trying to seek alternative treatment such as massage therapy but the financial commitment is holding me back, since insurance will not cover it.

I have been hearing a lot about these Lyme Literate medical doctors and have been interested in talking to one of them and possibly working with them for relief and cure for my Lyme disease. It seems like they are getting a lot of harassment over their style of treatment, but hey, if they can think outside of the box and help me, I am all for it.

I have attached a diagram I have made of the pain i am having and where it is.

Thanks in advance for any advice!!!

We need to educate these kind of docs! Sometime you can be treated poorly, due to the fact that you know more about your disease than the doctor knows.

It is arrogance and ignorance on their part, you must demand to be treated and BELIEVED!

Let me know how I can help.

Take care,

Leslie

If you are suffering from arthritic like pain that is onset from Lyme it might take a while before you get better. I am now half a year after catching Lyme almost back to normal.

I have been seeing an ID doctor, podiatrist, rheumatologist and most important my family doctor, they were all part of the puzzle. My heal pain got better wearing a shoe that had an 1-2 elevated heal, my podiatrist helped me a lot with my foot pain just prescribing the right shoes and inserts. You might want to look into that. Also, the rheumatologist I saw switched me from Naproxen to Mobic and in just a few days I started to improve, that was an important turning point for me.

Have you read Burrascanos guidelines for treating Lyme, I used it a lot and really belive in it. I think it really helped me.

Also, it sounds like it might be a good idea to see a LLMD.

Hope you will have a fast recovery

You are definitely in good company on this site. Your story sounds like a lot of ours... the pain, the doctors that don't know anything about this disease, the frustration... I think you really are going to HAVE to find a Lyme Literate Doc. I can't tell you how many people are telling similar stories to yours. Conventional, everyday doctors are completely uneducated in Lyme.

I know about the leg pain. Mine is in my left leg, as well. I have to constantly pop my hip joint and keep moving my leg or it 'locks up' and hurts. Valentine's Day this year I was on the floor in tears b/c it quit working -that was a first. I also have to stay as active as I can - sitting still makes the pain worse. A doctor would surely think that I wouldn't need any pain medication, I'm sure. They don't know what it's like - if they had to live everyday with a migraine, they would want to do something about it. I try to explain that it's almost like having a migraine in parts of your body.. almost everyday of your life.

I'm not a doctor - but I think I would go to an LLD (Lyme Lit Doc) before going through all those crazy tests. You sound like you have Lyme - I think we can all help you find some docs in your state soon. Jaime (on this site) will probably pop on soon and can send you a list - I'm not sure where she gets it.

I am actually going to treatment next week - I'm going the alternative route. I'll be posting what I'm learning while I'm there. Lymie (on this site) went to the same treatment and is doing really well.

Good luck - don't listen to doctors that don't have knowledge/sympathy about Lyme.

do not let anyone give you coritsone of any type right now, ok. That was my big mistake last year, and why I'm having a hard time getting well. It supresses your immune system, sets off a bomb in your body basically, and in my case re activated dormant viruses.

i will pm you how to find a lyme friendly doc

Your story is all too familiar. We know exactly how you feel. I have felt all of those emotions through the years. My lyme was misdiagnosed for at least ten years. The headaches and pain were clobbering and robbing my life from me. I lived on pain pills, a combination of lorcet plus and Ultram, for four years. I have a young family and I had a baby four years ago. I would not have been able to take care of them without the pain relief. It wasn't perfect, but it took the edge off. Your doctor is not very sympathetic. He sounds like a "conformist" and that is not helpful for us lymies.

The good news is there is a lot of experience on this website and a lot of helpful people that are willing to share their experiences. I chose the alternative route. I am better now. I started treatment one year ago, and I nolonger take pain pills, the brain fog is gone, the numbness is gone, the arthritis is gone, the chills are gone, etc. The list of symptoms is soooooo long. The point is: I'm better and you can get better, too.

I have a stunt kite, an inflatable kite and a traction kite. If you type in Kite jumping on Youtube.com you can check out some pretty cool videos. My doc doesnt really like or comment on my hobbies, but I dont care. When I kite, it kills my back & neck, but the fun and joy overcome it. Its all upper body excercise, and it relieves my leg pain most of the time.

I went skiing yesterday which was awesome. Very little pain... I thought about it and it seems like the ski boots support your weight within your ankle rather than putting all the pressure on your heel. I was actually thinking about the elevation of the heel in the ski boot, like having a 1-2 inch heel and i thought that might have had something to do with it. I thought it was funny when i read your posting and found that it relieves the pain. When my heel is hurting, i try to get off it by standing on my toes or on one leg, but it only helps a bit. Im definately going to check out the heels. might look a little funny if I got big heels being a guy but im cool with it.

Well all of your comments are much appreciated. I have a doctors appointment in 1 hour with my regular doctor. I think this will be the most interesting appointment yet. I am bringing a stack of papers, supporting my Neuropsychiatric Lyme Disease, a diagram of where my pain is and also what I want my plan to be as for a treatment...

By the way... Any recommendations for a treatment??? Which antibiotics ???

what about pain meds???

I tried mobic and it would make me really sick, very dizzy and nausea. Im taking Percocet 7.5/500 right now and its ok, but doesnt last as long as I would like it to.

My spelling has gotten a lot worse so if I spelled anything wrong, blame it on the tick. Luckly you can see my hand writing here.

~Ken

Let us know what happens with your regular doc. It's like a soap opera -- Those are the Doctors of our Lives...

I haven't taken any antibiotics so I can't really give you advice on that. Good luck though - I'll be interested to hear how it goes...

Post edited by: Clayton72, at: 03/03/2008 13:50

Kenn, you asked for recommendation for treatment. I recommend the alternative route. It worked for me. I'll post more about exactly what I did later.

yes, it is surprising that docs in Conn. are in denial about lyme-considering conn. is the place of discovery!!!

I know what you mean about hobbies. I kept on gardening, carrying heavy pots all around, dragging hoses all through the yard, etc. It was worth it. We have to have some fun.

You might want to consider the books listed on the forums. Your local library may even have them in stock.

I think it's important to know more about this disease than your doctors know. Trust me, most of them don't know much.