Don't know where I fit in anymore ......

Hello everyone on the Lyme Board...

I am new to this board but sadly not new to Lyme Disease.. I will try and make this short as I can.. I was originally dx'd in 1990 in NJ when I was 20..Given 3 weeks of treatment and sent on my way. At the time I thought I was OK but looking back I realize I wasn't..

In 1993 the Lyme started to ravage me and by 1994 I was disabled from it.. I spent the next 8 years going from doctor to doctor, from IV treatment, to Orals to "alternative"... some of it worked, some of it did not.. Needless to say, I am better but not by a whole lot.. I have never been able to get back on my feet 100% nor even 60%.. Its the year 2010 and honestly, I'm not sure what I am walking around with anymore.. It's all a mass of confusion when I think about it.

In 2002 I had to move out of NJ (financial reasons and a whole other story) and I landed in the south.. South Carolina to be exact..Some of you may recognize me from this post.. Anyhow, I have not had anything in the way of treatment since 2002.. Approximately Sept of 2002 I began to have trouble swallowing solid food..I went to all the doctors here I could and as per usual, no one knew or still knows why I can't swallow solids.. In the last years it's gotten to the point that I eat VERY little solids and mostly liquids... My nutrition at this point is very poor and has been for a few years.

I have had the stomach tests done etc and have been told that I am inflamed from my throat all the way through down into my intestines (makes sense since Lyme is also an inflammatory disease), that I had a small sliding hiatus hernia but none of this should cause my swallowing problem to the degree it is.. Oh, one doctor accused me of being bulimic (ofcourse I responded not in kind and informed him how wrong he was and that I am terrified of throwing up) and another doctor told me to go home and get my anxiety under control and I would feel better.

As for other symptoms, they all seem to be neurological at this point but finding help here is like looking for a needle in a haystack..I saw the one doctor who used to be in the next state over and unfortunately for me , the visit did not go well and I"ll leave it at that...

So thats where I am, sorry if this post is long I tried to condense it as much as possible... Thanks for reading..

Wow so sorry to hear what you have gone through. Are you back in Jersey now? Have you tried changing your diet and avoiding foods that cause inflammation. Do you have any co-infections? It has taken me a while to get back on my feet and I am still not 100% but I am trying to get there. Hopefully, some of us will be able to help. Don't give in. Keep posting with more info and you'll get more help than at any dr. you go to. Best regards.

wacko woman said...
Loves2Shop,

I am so sorry for all that you are going through. Problems swallowing food can be associated with jaw problems (and the autonomic nervous system). Dental work, braces, can all cause severe problems with our autonomic system.

I was treated for Lyme's by Dr. David Jernigan, then he sent me to Tacoma WA to see a Dr. Robson. I was still having seizures (turned out not be be Lyme's related at all, was totally related to my jaw). Dr. Robson stopped the seizures with appliances (how weird is that?).

When you said your symptoms seem to be neurological... that can totally be about head posture, the autonomic system, and jaw positioning.

Just a thought - try something different to try and get a different result.

If I can help in any way I will be glad to answer any questions I can. Feel free to e-mail me.

Be Well,
Wacko Woman

Hi Wacko Woman
Thank you for your reply.. I learned a few years ago well more than a few years ago that my spine is suddenly crooked... My rib cage also sticks out farther on one side than the other.. The doctors here don't seem very impressed and no one has suggested I do anything.. I also learned about 2 years ago because I was complaining of headaches so my MD took an X ray that my neck has grown straight as well.. He also doesn't seem to impressed. I did see a chiropractor but there was a problem with my insurance and it got so involved I got discouraged and gave up.. I do have dental issue's ever since getting sick all those years ago but no dental insurance so there's nothing I can do about that.. I have no money to lay out for dental work... I should probably go back to the chiropractor just honestly, after being beaten down by doctors for so many years I just get tired of it..May call him again soon though.. Thanks for your suggestions..

hey Wacko woman. so when you were at Jernigan did he diagnose you with any lyme or coinfections or did he say all your problems was from jaw misallignment. ?? or did that happen from the lyme? Is the guy in Tacoma an osteopath?

Razzle:

The weird thing is scoliosis can also be head position caused by the jaw. My scoliosis has been corrected with the correction of my jaw posture, thereby my head posture, and the spine aligns. This has been done with appliances. I know as I type this it must be strange to read - I know how I felt when I was in the midst of Lyme - to think it might be something even deeper than the Lyme's that was causing me to be so sick. But appliances and the jaw? Strange stuff....the knee bone is connected to the thigh bone and all of that.

Loves2Shop:

The spine doesn't become suddenly crooked without reason, your dr.'s just didn't know the reason. I understand about the money, we are definitely among the medically poor. I am so sorry, if I could I would whisk you away to Tacoma ... too much of what you are saying sounds familiar.... I am so sorry that your husband is also not strong. Life can be so hard....

Bucci:

Dr. Robson is a dentist, a TMJ specialist. He used to do jaw surgery, and every time he went into surgery he would say he was only doing surgery until he could come up with another way to treat the jaw and the immune system. He has the patent on the appliance that he uses, and is teaching dentists all over the country about how important the 'mouth and tongue' are in running the immune system.

I spent 7 weeks at Hansa Center (Dr. Jernigan) being treated for Lyme's (over a period of 2 years). Had Lyme's and all its co-infections. With all I have learned in Tacoma, I am thinking I would never have been so ill from the Lyme's had I not had such trauma going on in my mouth. There were 3 different times that drs. were not sure I was going to make it. I am still a work in progress, but I went hiking (9 miles) and camping and all sorts of normal stuff this summer. It has been a long, long, haul though and there were times I wasn't sure I was strong enough (or wanted to ) hold on.

Thinking of you all.

Be Well,
Wacko Woman

Somebody said...
My rib cage also sticks out farther on one side than the other.. The doctors here don't seem very impressed and no one has suggested I do anything.. I also learned about 2 years ago because I was complaining of headaches so my MD took an X ray that my neck has grown straight as well..Wow..i'm new to posting here but i've been reading alot..that comment struck a nerve with me.. my 19 yr old daughter has the same two issues, wonder if thats routine for lymes disease, i haven't seen it til now.