Question about lyme disease

Hi Wantingtoknow!!!
Welcome to our Lyme forum!! I am terribly sorry that you have a need to be here asking questions, but I am sure glad you found us!!! I'm just sure you will find us to be a caring, helpful & understanding group!!

To answer your question in the shortest possible answer - yes. Only LD doesn't actually go away. It lies dormant in the body, ready to come out & be active again when the body is stressed the extra bit too much.

For others it is much more devastating to their lives. In my case, I was infected at the ripe age of 5, so I've lived with tick-borne infections for many years. I grew up thinking a lot of the symptoms were "just me".

It sounds like maybe your body is really trying to rid you of this infection on it's own, but can't quite get there by itself - which is the case of a lot of those who are infected. If you don't take action soon, it is safest to assume that you will begin to notice that your health is keeping a steady pace - down hill!


My first suggestion is that you read the sticky at the top of the forum titled "New to Lyme?...Start here", as it is packed full of good information that we thought would be the most helpful.

My second suggestion- get in to see a Lyme-Literate Medical Doc (LLMD) asap!!! Only those docs who really understand the danger of these infections are willing to educate themselves to the level where they are considered Lyme Literate. At least that's the best explanation of the difference in docs as my brain will allow!

We are all wanting to get to know you more through your posts. I hope that this helps some.

Trav

Thanks for welcoming me!! :) And thanks for the help! :)

I haven't been tested for lyme yet. I'm thinking I have ms or lyme. about 4 years ago, I began having headaches, and my eyes and also behind my eyes felt weird, and it was hard to focus, like my eyes would go left and right very quickly, but not noticeable to anybody but me. I went to the optometrist and he said everything looked normal, but he did say he saw my eyes going left and right quickly under a tool he used (don't know the name of the tool). I think that condition is called "nystagmus". I also had a lot of twitching and my movements felt jerky, but noticeable to anybody, just me. So then I went to a neurologist, and had an mri done, and it came back clear. He blamed all this on migraines without the bad headache part. After some time passed, the symptoms went away. But now four years later, they are all back. Except the headache. And this time, there was about a week where my legs felt weak. The first time I got these symptoms, lasted about 3 months. This time, it feels like its getting better, and its been about 3 and a half months. Does this sound like it could be lyme disease? Is nystagmus a symptom of lyme for some? Im just trying to make sense of all this. Thanks for all the help!! It means a lot! :)

Wantingtoknow,
Please don't get too 'hung up' on getting a positive Lyme Disease test. Testing for tick-borne illnesses (TBI's) isn't really feasible, as the infections has many different ways to hide & the testing that is available at this point - even for new infections - is not necessarily accurate.

Most labs are not equipped to run the types of testing that is required to identify these 'bugs', and then most of the ones that are set to do those tests properly, don't have employees that are actually trained in how to interpret them. They have to understand which shade of gray they are looking at & what that actually means.

My eyes do things like that as well. This is part of the reason that as I post, my paragraphs are shortened & broke up in weird places - I lose my comprehension with long paragraphs.

I looked up the condition " Acquired Nystagmus", and it is very possible that it could be caused by Lyme or another tick-borne infection if it reaches the brain. Here's a link where it gets explained in layman's language;
www.nlm.nih.gov/medlineplus/ency/article/003037.htm

One of the most frustrating parts of being a person with tick-borne infections is that so very many tests come back as "normal", when we know darned well that things are amiss. A clean MRI is a good thing, and yet for a lot of 'Lymies' it's incredibly frustrating to have.

Please do keep on asking questions!!! It's the only way to get through the maze of information & trying to understand which is good info & which is bad info.


Merry Christmas everyone!!