very long term infection

my GP keeps insisting that i have Lyme disease, yet has not tested me nor asked about my history regarding how i could have gotten infected. i have been very ill (disabled) for over 20 years with nearly all the symptoms listed here, but during those years i have taken antibiotics many times for various infections with no improvement of what he insists are symptoms of Lyme. can my dr possibly be right? and if so, after all this time, would there be anything he can do to cure or relieve it?

i should add that i never noticed a tick bite (surely i would?) and never had the rash described in all the literature.

i can't help thinking he's barking up the wrong tree, but he's so very difficult to talk to that i hope i can learn something here which would help.

thanks!

Wow I agree. If your GP is saying lyme, go with it. Get tested and yes you could and probably will feel better but not on a short course of antibiotics. It will take some time (I am on for almost 2 years) and the symptoms may slowly wane but it sounds like to me it is certainly worth the try. BTW most people with lyme(especially chronic lyme) do not remember a bite. Ticks that carry lyme can be the size of pencil point and if you get big somewhere you cannot see, head, back, etc., you won't see it.

Hiya Samik05, first let me start by saying my husband has lyme, and I am here for him.

While my experience is recent and limited, allow me to address some of your concerns. I know I too had them. And, since this post is about you and not about my hubby I will limit my response to your concerns.

First of all, is the GP TREATING YOU for lyme or have you been letting his diagnosis sink in first? That's a huge question.

Tho you say your GP is hard to talk to, you should ask him why he hasn't tested you. I have read everywhere that the testing is unreliable, and that may be his reasoning. Also, it might be the doctor doesn't want to be harassed by the insurance company if/when the diagnosis "lyme" comes up. Insurance companies will pay generally for 3 weeks doxycycline by CDC guidelines in place, and doctors would like to stay under the radar when going off the grid--such is the playing field of lyme disease. 3 weeks of Doxy would probably do nothing for you at this point towards improving.

Also, under the umbrella of lyme, there are co-infections that also respond to different (specific) antibiotics, so it would be worth it to be checked for those, at least the 3 most common, babesis bartonella and erhlichia. Many people with lyme have at least 1 of these coinfections. Again, you have to ask your doctor about these tests and his reason for not ordering them.

Even tho the tests are unreliable, I'd want them.

I know it is difficult to wrap your head around the idea that over the years and having taken assorted antibiotics for various infections/conditions that lyme would also have been eradicated at the same time. Totally, I get that. The problem with that is, different meds work for different conditions. Period.

We think we would you know if we got bit, but it isn't that simple.

a) the tick spits a bit of pain killer into the bite before sinking in. So, you don't even feel it there. INGENIOUS!

b) Ticks can be so small you'll never notice them, even if feasting right where your eyes can see, but especially if they are in a place you cannot. Like any areas on the back of your body as opposed to the front.

c) The rash doesn't always develop. It doesn't always look like a bullseye rash. It could develop on your back, or back of your thighs, or butt....how would you notice if someone else didn't see you naked when it was there?

The bottom line is this....
Continue your research on lyme, its coinfections and its history.
Have a conversation with your GP, no matter how difficult you feel it will be. Your life depends on it.

Lastly, could it be something else? Of course it can; lyme mimics a lot of conditions, and vice versa. Symptoms for many conditions can overlap. Do you have a different diagnosis? Have you been tested for other conditions that rule those conditions out? The fact that you have been ill for so long and that your GP put it together as a case of lyme is significant.

Really, you and the GP have to have a chat. Be fearless, as your life depends on it.

ME is similar to and/or often referred to as either mistakenly or purposely CFS. (I just read that by way of a quick Google search). Both are neuro. Lyme can manifest itself in the CNS. Recent studies into PD are also making a connection to lyme.

Lyme disease is a puzzle. I'm still learning. Keep looking for the answers. Hugs, chick

I agree with all of the above. The Igenex test kit can be sent to you and your doctor just signs off on the order. (Just make sure you talk to your insurance as to where to get the blood drawn so it will be reimbursed).

My Integrative Med doc gave me the info to have the test kit sent to me, and then when it was positive, he was humble and honest enough to let me know that he did not know how to treat Lyme.

I appreciated his help and support in the diagnosis. He found a doc who treats Lyme, but she doesn't take any insurance. I almost went to her, but travel 5 hours to one that does take insurance.

I say all this so you will feel encouraged to take the step to get tested and start looking for a LLMD to get treated.

All the best to you