Seeing a Infectiou disease Dr. I'm hoping to get answers to questions I have.

Ora,

Welcome to the forum. Sorry to hear about your damaged spinal cord and painful joints. I have some comments to make but have a meeting to attend to in just a few minutes. When I get some time I'll respond to some of your questions. I'm sure others will be here soon to respond as well.

Ora, do you recall ever being bit by a tick? Did you ever have a bulls eye rash anywhere on your body? That would be helpful to know before answering your questions. Of course, not everyone knows if they've been bitten by a tick but still get Lyme disease.

I'll be back later on to share some thoughts with you and answer your questions.

Gary

Gretchen, Thank you for answering so quickly. I will do all I can about The Lyme disease if I do have it.

I tested positive for Lyme 8 times but was always told it was a False Positive. I am Dxed with MS and Nuero Lyme from an LLMD. I did very well on IV antibiotics and showed almost complete improvement, even the lesions on my MRI healed. I stayed on low dose antibiotics for 2 more years and when I stopped boom it was back 13 new lesions in different spots were back and this time my symptoms worse.

 I went back and saw my Nuero LLMD in CT a 3000 mile trip for me and he recommended we now treat MS, Lyme and CPN. So I am now on antibiotics and Copaxone an injectable MS medication. I feel like I am covering all my bases. There was recently a very small study only 30 people that used Minocycline with Copaxone for MS and the results were good. They are now working on 4 larger studies. I hope they are succsesful because I feel it works with me but can not find a Nuero who agrres with me localy. My MS Specialist knows I take antibiotics and does not feel it is necessary but is supportive of my choices.

It has been a very hard road for me going on 6 years of trying to figure out what to believe. I hope you get a Dr you can trust and feel confident one what is going on. I personally have had no luck with Infectious Disease Drs where I live they look at my 8 positive tests and they that it can't be right we don't even have Lyme here. It's funny to me that Dogs in my State test positive and are treated properly Vets even believe in Chronic Lyme. I am on the CDC statistics for my State after 3 positive tests they called me and talked for over an hour they wanted to try to figure out the location where I got Lyme. it shocked me because at that time i still believed my Drs that My tests were false she then called my first Nuero and asked him if he needed information on how to treat Lyme that is how I got my first 3 weeks of antibiotics and could tell they were working and got my butt on a plane to CT to get more. Best thing I ever did!

HI Ora,
Welcome to our forum!! I'm sorry you are feeling so poorly. One of the best things you can do is to read, read, read!! I believe most here will agree that we have to be our own health advocate.There is some really great, information packed posts in the thread "New to Lyme? Start here".

Personally, I don't believe that there is such a critter as a "False Positive" with a tick-borne illness (TBI) - it would be like being only "a little bit" pregnant - you either are or you are not. If a person has enough of the anti-body to test positive, then you have enough to be ill. I also believe that just because a person tests negative, it doesn't necessarily mean that the person isn't infected with a tick-born illness because the infection can leave the blood & essentially hide in the tissues. There is plenty of evidence (I'm a living one!) that the illnesses can stay 'under the radar' for extended periods of time, only surfacing when the body decides it is under too much stress.

Not remembering a tick bite is not a big deal, as a tick in the nymph stage is no bigger then the period at the end of this sentence. And, once a person understands this, it becomes much easier to understand that a person can have a tick attach, feed & then drop off without even being noticed - especially if the tick attaches on the scalp.

There's even new studies coming out that it's not only the "hard-bodied" tick, but also the soft-bodied ticks that carry disease.

Of course this all is just my own opinion, I am not a medically educated, I have just done a lot of reading.

Thank you for the information. I had no idea that most insurance doesn't cover seeing an LLMD. In rough numbers what do you think it would cost me so see one? If it's very expensive I don't know if I can afford it. I'm wondering if I see one initially then see my PCP could he take over and treat me for it? Thank you for all your help.

I don't know of a good LLMD here. My PCP is who referred me to the Infectious disease clinic. I tried to look online to see if there was a LLMD here but had no luck. I'm not sure if I am going about it the right way. Like you I also have a neurologist who has sent me for a spinal tap and several MRI's thinks I have MS. I think that's why I am so confused about the whole thing. Both of my doctors have different opinions on what they think I have. I think I mentioned earlier that I did test positive for Lyme in the blood work before my spinal tap. about the costs, are they willing to let you make payments or does everything have to be paid upfront that isn't covered by insurance?

There are several Lyme sites that will assist in finding LLMD's.
I can only remember a couple of them(Lyme-brain!), but if you were to do a search for Lyme sites & check them out I'm sure you will find more.

The two I can remember are Turn The Corner, and Canlyme.

Ora,

I apologize for not getting back to you. Please click my email icon and send me an email and I will give you links to places where you can get LLMD referrals. You really do need to see an LLMD as that's the only way you're going to know if you have Lyme disease or not.

That "false positive" comment from your neuro is laughable, but quite typical of doctors who have no clue about this disease, that includes most Infectious Disease doctors too, sad to say.

I'll wait for your email then will promptly send you the links for finding an LLMD in your area or as close to you as possible. Let me know where you are too.

Thanks!

Gary

Ora,

That wasn't the website I was going to refer you to. There's two other websites other than ILADS that you can get LLMD (ILADS members) referrals from, but it's best I don't post it here in the open. If you'd rather not email me for privacy reasons no problem. I hope you find a good LLMD somewhere near you and soon.

Gary

Ora,

I got your email. Will respond when I get back from a meeting in couple of hours. Strange you got them back because I did get it.

Gary

If they have me pay upfront then I will do that but maybe I'll get lucky and they will arrange payments for me.

I saw the infectious disease doctor and was told that I had a false positive for Lyme from him. He went by the test I had run before my spinal tap and didn't run any tests of his own. He said if you have any kind of infection or bacteria in your body you will test positive in the screening. Then they do a second test the western block and he said I tested negative. That's the reason he said I have a false positive. Has anyone been told this before? He said it is more likely I have MS. He ask all of my symptoms and said they aren't consistent with LYME. I thought the symptoms for Lyme were the same as MS. I'm still as confused as ever.

Post Edited (Ora) : 5/25/2010 5:47:44 AM (GMT-6)