It's been a long, long day and it's only 2 here.

I went to see the Immunologist today and he says he believes I have lyme disease. I have thought of this before. A friend of mine has it. He moved to Alaska a few years back but I can remember he couldn't get the help he needed here.

The Immunologist gave me the name of an Oncologist in the Springs that deals with just lyme disease. Only thing is a lot of his treatments aren't covered my insurance so I don't know if I can afford him.

I also went to a consignment shop today that I love to visit and I met a girl with RSD and has the pain pump in. She showed me where they had put it in. She has had it for about 2 years and continues to work. Now though it's in her foot, she showed it to me and it was swollen and discolored. I gave her this site hopeing she will come on here. I was telling her that she could learn a lot on here about the RSD and how to deal with it.

One thing I thought was odd is that some of my bloodwork wasn't done. The lab put cancelled on it. I told them I'd go back later to get them done. He said the others turned out ok but my cell count was low.

He wants to see how I do on the CPEP machine and the allergy meds I am on in the next two weeks.

Also he thinks I am having anxiety attacks in my sleep and that's why I keep waking up and having breathing problems also. I honestly thought I had those under control.

I also picked up my New Balance Tennis shoes so I was excited about that. Now I will try and take some walks again.

Too much in one day. I am going to rest awhile before my boys come back in from swimming.

Ada

Ada,

With Lyme Disease how can you afford not too. If left untreated it will kill you. It really will.

Money is just borrowed in this world. IT REALLY IS. Last year my medical bills were 90,000 out of pocket. Much Love, Roz

I was told I might have lymes once, but after a few tests it was ruled out. It seems it shares alot of the same symptoms as RSD.

It is a good idea to get tested in a couple of places for it because it is hard to determine if you have it or not.

Hi everyone
I did a bit of research when my daughter was diagnosed with RSD and its relationship to Lyme as she had Lyme when she was 3 or 4. No one thought the connection was there but I have always wondered.....

I have also met another person who was diagnosed with RSD and it was Lyme. Lots of bloodwork and tests later, she was on antibiotics for over a year and did HBOT etc and trying to get better.

Lyme does not always show positive on blood tests-- it really depends on when the tick was there and when the blood was drawn. There are very often false negatives.

Buckwheat is right-- don't mess with Lyme, it can kill you and it will make life miserable. Please continue to get checked.

Also, if anyone comes across any research...I sure would be interested...

I wanted to ask what kind of Dr. do you see for Lyme disease?

I called the Dr. in the Springs that the other Dr. wanted me to see and his office is closing July 30th.

This Dr. has lyme disease and I was told that he figured out his own treatment to get himself better and of course around here if a Dr. tries anything the insurance don't approve of they won't pay for nothing so he has decided to close his office after 4 years. The Immunologist said this Dr. was so bad off he couldn't get out of bed and worked with treatments until he was up and around.

I don't know what other kind of Drs. deal with Lyme disease. I will talk to my PCP this evening to see what his thoughts are on it.

I have been sick all day again, throwing up. This is the 3rd day in 2 weeks that I have delt with this. I don't know what is going on with me.

Thanks for the help in advance and to the ones that have answered me.

Ada

Hi Ada,

I really hope your PCP can help by recommending someone else. Ada I am very ill myself. My pain level is way down, I am very sick still. I am doing everything I can. You need to find a Lyme Literate MD. Hugs, Roz


Here is a article.


http://www.confrontinglyme.com/foreward.html

Hello Ada

we do have a Lyme Disease forum here that isnt all that active re discussion, but does have a lot of very helpful info re Lyme

Also, one of our members BlackRoze has Lyme and has a wealth of info and experience related to it that may be helpful to you

Lyme can be very serious and it is oh so important to have knowledgable qualified professional care if you do in fact have this disease

hope that helps a bit with info for you
here is the link to the NT Lyme disease forum http://neurotalk.psychcentral.com/forumdisplay.php?f=91

Cheri

I will go over and read on that forum and PM Blacckroze.

I have been so sick here lately. I called my Dr. and I see him as the last patient tomorrow so we can decide on turning my VNS off until I feel better.
I really don't want to do it. We had planned on turning it up Monday and he didn't get the call from the company on how to do it a different way to keep it from messing with my breathing. Now we may decide to turn it off.

I am going to try and find a Dr. to check me for it. Roz gave me a good article that explains the problems with getting help for it, but I am going to check and see if I can find someone who might know something about it.

Thanks again,
Ada

Thank you for you concern and help on the lyme disease.

I just wanted to let you know I saw my PCP today and he ordered bloodwork to see if I have it or not. He explained it to me but I'm no good at explaining it.

He called those places Erytherna Migrans. I don't know if I'm spelling this right. The man writes pretty good. A lot better then me but some letters I am not sure of. He said it will take awhile to get the bloodwork report back due to it going to Denver. He's hoping they don't cancell it as they did the 3 test the Immunologist ordered.

I'm glad he's doing it. I didn't want to have to go looking for another Oncologist.

Ada

Sorry everyone that i have been missing Action over here for some time. I have been fighting infection after infection, finally i think i got the upper hand at the moment. So Sorry if i have let anyone down. But the good News is i'm back.. hugs missed you all..