Lyme Literate Patients

[futurehope]

Do the above test signify that I should see a lyme literate doctor? Any ideas?

[abbriggs]

I would. I am seeing one at the end of January. Check out LymeNet. There is so much info on their site.

http://flash.lymenet.org/scripts/ultimatebb.cgi

[runningshoe]

Future hope do you remember me? I am a fellow ICer. We chatted a few years back when I was falling apart. I am being treated for lyme. It may be the cause of pots and yes even cause IC (or in my case make it worse). What band was positive? It is important to also have a cd57 test done which measures your immune response since the lyme tests look for anitbodies but if your body isn't making them you won't have many positive bands. Why not see a llmd? You have been dealing with this long enough. I posted about my recent lyme dx a couple of weeks ago - you can look back and read it. Feel free to pm me.

lina

[futurehope]

Hi, Lina,

Thanks so much for responding. My IGG (?) band that was positive was 41. The screen was positive and I had the one band. This was back in 2000 before my POTS really reared its ugly head.

As for lyme literate doctors, I tried to make an appointment with one in my area with a good reputation. The sec'y asked for my insurances? I have a primary with my husband and a secondary with Medicare (for disability).

She heard the word Medicare and refused to even set up an appointment? I kept saying "Medicare is my secondary. You (I) don't need to involve yourself with Medicare. I'm going to be paying you $$$: why can't you just take my money and forget it? I got so upset with her ignorance that I said, "forget it".

I heard from other lyme literate people telling me that all the good doctors won't take me because of Medicare. Medicare is my secondary. If I pay $$$,, why do they reject me?

So, I'm going no where fast right now and I cannot see a lyme literate doctor (supposedly).

[runningshoe]

Hi

So you haven't had a recent lyme test? Maybe the reason they are scared of the medicare issue is they might have to report more about you and your treatment...I am totally guessing here....but there is soooo much controversy and drs have to be careful. I would try calling back again and not mentioning it? Band 41 is important, it is one of my positive bands too. I have read that some researchers say that if you have band 41 and don't have syphilis or gingivitus, you must have lyme. I have also read that it is usually the first band to show up. I have been on antibiotics for 3 weeks so far. My bladder likes it butI am still very potsy. Make sure the dr you choose is not diagnosing everyone who walks through the door with lyme. You should have other tests as well such as a brain scan and the cd57. I also had cognitive testing. My daughter had an emg. The dr we are seeing believes that there are many coinfections that complicate the issue. The tick gives you more than lyme when it bites you. With your IBS that might be something to consider. Bartonella can cause neurological problems and GI issues. My daughter had these stretch like looking marks on her sides and legs - another indicator of bartonella. Do you have a lot of ticks where you live? We are overwhelmed with them. Also make sure the dr uses a top notch lab like igenex. The test is costly and my insurance wouldn't cover it. Hang in there!

[futurehope]

Lina,

Again, I want to thank you so much for giving me some more info. I live in Maryland, one of the "high-tick" areas on a map, though not on the Eastern shore where the map shows the greatest concentration.

I may pursue this entire new path with my new PCP who is in the Hopkins system and has already accepted me as a patient.

For me, the interesting thing is, I do not have what I would call the "usual" aches and pains that lyme people usually have. I have POTS, IC, irritable bowel, restless leg and GERD.

But, honestly speaking, I forgot all about my year 2000 test, then dug it back up, and noticed the positive, and thought..."you know, maybe something is going on here". That's when I tried to contact the LLMD and got rebuffed.

The sec'y had taken my name/address/phone before I got huffy and said "never mind", so I don't what what I'll do there.

Can I have lyme, or co-infections, if I do not have the aches and pains usually associated with lyme? TIA

BTW I have definitely been on the Eastern shore in high tick areas and remember when we stayed in an old house there, I got a rash all over and was told it was fleas?!

[juliegee]

Futurehope-

I think pursuing it through Hopkins is a great idea.

I wouldn't give up on that other lyme doctor though. I'm sure that receptionist tossed your name & address, etc. in the trash when you hung up. If that ends up being your best choice, call back and just mention your husband's insurance. After your in, you can 'fess up to the medicare part or just handle the remaining charges out-of-pocket. How awful for them to be so prejudicial against medicare. It's supposed to be there to HELP you. Sorry you are dealing with that.

Keep seeking answers. I think you are on to something here.

Hugs-

Julie

[runningshoe]

Futurehope,

I also don't have the typical aches and pains. I have IC and Pots, that's it. I remember many tick bites and yes the rash can be different than the typical bullseye. I think you are on to something..........