Feeling really tired tonight - Lyme Disease Message Board

srocc20655 · 10-10-2006, 04:53 PM

I am feeling so depressed right now. I have only had Lyme since last fall but didn't get diagnosed until May. I had high doses of IV antibiotics for 3 1/2 months. My Dr. thinks the active infection is under control because my CD57 level is above 110. Problem is I still live in chronic pain. Lyme got into my left TMD (jaw joint) and has wreaked havoc in my gums, roof of mouth, tongue, neck and teeth. Since being off the antibiotics have been religiously taking samento, noni, and 4 of Dr. J's tinctures. I have been to massage therapists, accupunture, TMJ specialists and on and on. Bottom line is - I live in chronic pain and wonder if this will continue the rest of my life.

I am very angry because I told the Dr's (9 of them) and Dentists (7 of them) last winter that I thought I had Lyme. They basically told me I was nuts. Now I live in chronic pain because of their stupidity and denial.

I am having a bad day - it is clear that I will be in chronic pain for a long time - maybe forever.

I need a friend to talk to. My family and coworkers are all tired of hearing about Lyme - blah blah blah. They all think I should be cured by now. Yeah right! Lyme is not prevalent here in Detroit which makes it worse. I am all alone.

Thanks to all of you.

Sue SROCC20655

TINUVIEL · 10-10-2006, 06:08 PM

Hi Sue,

Sorry you are feeling so ill and don't have supportive people around you.

Lyme can indeed be very scary to deal with as there seems to be little information that is accurate and a great deal of ignorance to complicate matters. Also hard to deal with when no one seems to be able to tell you anything at all about the long term prognosis.

It sounds like you've already run the gamut with all the conventional and alternative options. I was just wondering, are you being treated for co-infections? Sometimes someone with a higher CD57 who is still experiencing symptoms has co-infections. A lot of patients have as much trouble with these as with the Lyme itself.

Is there a Lyme support group in your area? I know it's not as prevalent in Detroit but I have seen Lyme groups almost everywhere. So much for Lyme being a "east coast" problem!

6Blues · 10-10-2006, 06:33 PM

Dear Sue.

I know how ya' feel.

Most of the important folks in my life avoid me now that I am sick. Once in a while I hear from a friend, or a family member and it cheers me up.

I usually don't offer any information on my illness. If they ask, I give the short version or I just say "No change."

My kids have to listen to me but that's 'cuz they're too young to move out.

I use this board to vent and complain and whine and simply tell folks how I am doing. It's the internet, yes, so I don't know these folks personally, but I think of everyone here as my friend.

I will never meet you, but I am here for you. I will listen to all you have to say without rolling my eyes or checking my watch or passing judgement.

I've had doctors tell me I was crazy. I knew I wasn't and neither are you. You have knowledge now that you didn't have before and knowledge is power!

I am sorry to hear about the pain. It stinks to have to live with it every minute of every day - I know. I have it too.

My pain is in my feet and legs. I dread having to stand up and walk. A small thing like walking to the kitchen for a glass of water seems like a mountain to climb. Don't get me started on how painful it is to walk to the bathroom, sit down on the john and then have to stand up again. Yikes!

I don't think you won't be like this forever. You will be pain free someday, but it's hard to hear that when you are hurting right now.

Try to take it one day at a time, or one hour at a time, or five minutes at a time.

Peace and health to you.

srocc20655 · 10-12-2006, 07:05 PM

Thank to both of you for your kind words and support. We may never meet but we have such a strong bond with this crazy Lyme thing.

Your words meant so much to me I cried. I am very appreciative.