I still wonder if this is neurological Lyme disease and not MS.

I had a couple of Lyme disease tests (an ELISA, and a Western Blot) and the ELISA showed I had one or two of the Lyme bacterias, just not enough of the various bacterias showed up on that test for it to be positive.

Intrigued by the results of the ELISA, I had my blood tested at a private blood testing company (they sent me a blood test kit for a Western Blot, my doctor drew the blood and wrote the order for the test to be done) and that test showed several Lyme bacterias...only thing is, the CDC (Centers for Disease Control) say that you have to have a certain number of these bacterias show up on a Lyme disease test for you to have a positive result of Lyme.

If I remember right, there's something like 19 or 23 different bacterias that are specific to Lyme disease. You have to have so many of those show up on an ELISA test, and several more of them on a Western Blot before the CDC will accept it as a positive result.

I looked up one of the sites that I was reading back when I had the Lyme testing done. Here's the site http://www.anapsid.org/lyme/wb.html

I went and looked up what my Lyme test results were. I hit two bacteria on the IgG (Western Blot test) and 3 bacteria on the IgM (also on the Western Blot test)

The bacterias on the IgG were specific for borreliosis (sp?), and the 3 on the IgG were specific to B. burgdorferi.

I remember back when TinyMonsters was a puppy, and we had gone for a walk in a field and both Tiny and I ended with a few ticks on us...a few months later, I had another tick bite AND a rash that went all over my body. It wasnt exactly a bullseye rash like a Lyme rash would be, but it went over my whole body, and it appeared not long after that second tick bite.

Then there was the mouse problem we had in our old house once...and those mice had actually gotten into my bed (ate my pillows!). Mice carry the ticks that carry the Lyme. So, I could have had another tick bite without knowing it.

I havent ever been able to get more than one doctor to take me seriously on the Lyme disease testing. The one doctor who did said he still had to follow CDC criteria and wasnt allowed to treat me for Lyme because the CDC would come down on him for unnecessarily treating me.

If I have MS or Lyme, at this point I dont think it really matters all that much. If it's neurological Lyme, I'm guessing it's gone too far for me to do all that much about it. So, I just call it MS now.

thyroid test: TSH 3rd generation = 1.55: T4 (thyroxine) total = 8.3 both in normal range
I had low glucose (56) non-fasting, low carbon dioxide (20), and low B12 (308)

I figured you would have but thought I'd throw that out there. Of course that solution would have been too easy huh?

What I don't get about Lyme is...what would it hurt to treat you with antibiotics and see if the sxs dissipate?

I know, but no doctor wants to do that just in case it's an "unnecessary" treatment. Since according to the CDC, I didnt have enough of the bacterias to qualify as a positive Lyme result.

I've read a few medical journal reports that say if you have just one Lyme specific bacteria on an ELISA or a Western Blot test, that you have Lyme and should be treated for that. I had two on the ELISA and three on the WB test. I just cant get any doctor to actually take me seriously because of the CDC has weird guidelines for Lyme. (they're actually guidelines for research, not for diagnosis)

Irritates the hell out of me.

There has always been that little feeliong in the back of my little brain also. I have been clinically probable since 1997. I had one lesion in the pons then and I still just have the one lesion. My neuro here in town is an MS specialist and I have been to a MS clininc. I have been on Avonex since 2/97

Hi Relyonhim,
Welcome!

I never questioned mine because I didn't know what the heck it was back in 1978 with my first symptoms that doctors could see.

I was in the hospital a week in 1981 and was tested for everything and told I had MS. I was happy in denial for many years. No medication available, except the occasional oral steroids when needed. Low dosage back then, but longer time periods.

After my dx in 4-1981, I tried to look up books on it, no internet available, no MRI's. What is MS? Until in got bad in 1998-1999 I got away with a lot of faking and denial. I didn't tell anyone either, but my DH.

During my early years I might have questioned it, but I denied it instead. Re-diagnosed in 2001 by MS specialist to get medication approved. MRI, and the works for ins co.

I also have all your other symptoms and have other dx's as well. When you have one disease that attacks your body, it is easy to have another one attack another part of your body. Good luck!

Erin, I had many tick bites, pulled out ticks, and had red rings. As soon as I get a bite my PCP puts me on Doxycycline for two weeks. He says might as well be certain than try to prove it, he saw them and the rash.

http://www.rxlist.com/doryx-drug.htm

I'm pretty sure that if I got a tick bite and a rash tomorrow, I still couldnt get a doctor here to give me any treatment for Lyme.

According to them, I dont live in a Lyme endemic area. (uhhh...some research I've read says it's in almost all 50 states now...at least the Lower 48)

One of my tick bites that I can remember, happened in Texas, and they still wouldnt take me seriously.

My knees are really bad, but because my knees werent a bright red and the fact that I can still walk they blew off that symptom of Lyme too.

I just gave up trying to get anyone to at least listen to me about it. I got as far as getting the Western Blot test for Lyme done, got results from that that showed some Lyme bacteria that wasnt on the ELISA, but it still wasnt enough.

I couldnt get them to listen to me about Lyme, and cant get them to let me try LDN...I'm stuck with either taking an approved med for MS, or not taking anything at all. I dont like the side effects of the meds, so I just wont take anything.

[QUOTE=Lady;623418]Hi Relyonhim,
Welcome!

[I didn't tell anyone either, but my DH.]

[I also have all your other symptoms and have other dx's as well. When you have one disease that attacks your body, it is easy to have another one attack another part of your body. Good luck!]

Did you finally tell your family and friends? were they upset with you, that you didn't tell them eariler?

You really have all my symptoms?......see, what I do is overthink. I say to myself well my neck/shld tingling arms is probably from the herniated discs....as well as the bladder/bowel issues, or from having 5 children.

the visual issues, and cognitive....I blame on the migraines
the fatigue.....I blame on everything....etc, etc, etc...

but one thing I need to remember is that the cortisone injections I got in my shld and cervical spine....did not help, and doctor said that it really should have helped....and my herniations are more to the left.....and my right arm is worse....so maybe it is the MS afterall.

Thanks so much to everyone for relpying....

If there is one thing you can count on for this place, is responses. We love to compare notebooks.

Seriously, I sit in that chair every six months, and one of my first statements is "are you SURE this is MS?"