How long have I had Lyme disease?

So mid July of this year I got dizzy at work and it never went away. It is like a pulsating, swaying, bobbing feeling in my head. Three weeks later I got muscle twitching all over my body that I still have, it started with my finger twitch or a twitch in my calf, but then started making my whole body jerk. It has calmed down, it is only when I am sitting or laying down. There were someday I felt like my body was vibrating inside. I have had multiple lyme test, western blot, babesia, mycoplasma pneumonia and eherlichia and the mycoplasma I had positive but it was not the acute one. Every other test was negative. My brother says he had all the samy symptoms and it can down to it all being anxiety which he takes lexapro for and now he is fine. If these neuro-muscular symptoms are lyme how when was I infected? How long does it take for these symptoms to appear? I have never been bit by a tic that I know of, and I have never had the rash. The only time I remember having a rash was after a shower and I used a very strong perfume body wash and I got a little rash on the inside of my wrist that went away in a day. I am not totally convinced this is lyme. My ENT docotor gave me a script for doxy for 3 weeks because I asked for it. I am almost done with my 2nd week and I feel no different. Any input would be great

Have you had a Igenex Western Blot?

Ok thanks for all the input. I have not had the igenex how do I get a doctor to order that test? I am a nurse and have a lot of doctors that I talk to at work but I don't share this information with them. My primary doctor basically said to me that she isn't going to do anything else she mentioned cost and I said I have insurance. So I know I definitely need a new primary. It is crazy I have never been sick besides the common cold, and now I have these crazy symptoms going on. The only thing that makes me feel like this is maybe psychological and not physiological, is that my "dizziness" is worse when I am more with a group of people or different situations. And when I am watching a movie and I am really into the movie I notice I don't twitch but if I feel a bit anxious that is when I start twitching. I kinda rather it be anxiety than lyme, because all these post on here really scare me. I have never had to take medication except the ibuprofen once a month. This all seems really crazy to me. I definitely want the igenex test done. Can any MD order it?

I'm so sorry that this is so confusing. It is to most everyone that doesn't get the bulls eye rash.

"If these neuro-muscular symptoms are lyme how when was I infected?" Sometimes we don't ever know the answer to this. I can look back at my life and have figured out when I started showing the worst of my symptoms - but I have never had the bulls eye rash for conformation. So many insects can now pass this infection along, it's hard to know what passed the infection on to you. Mosquitoes, biting flies of all types, spiders, ants - basically if it can bite, draw blood and survive to bite again, it has the potential to pass on these infections.

"How long does it take for these symptoms to appear?" This is different for everyone. I lived with my symptoms for most of my life, they didn't get really severe to the point of stopping my life for many years. Others get symptoms so severe right away that they are hospitalized. A lot of it depends on what else is going on in the body. A compromised body will have a much harder time dealing with a very complex bacteria like Lyme disease.

"I have never been bit by a tic that I know of, and I have never had the rash." Unfortunately, this does not exclude you from being infected by itself. As I said, there are many insects that can pass these infections along besides ticks - and the bulls eye rash is only present in about 40% of those that have a positive Western Blot - the real numbers - those where we all are taken into account - are unknown.

I also never had the rash with Rocky Mountain Spotted Fever - but I had all the other symptoms. They even have a name for it! Of course it's Rocky Mountain Spotless Fever.

The tests are not that accurate - they rely on the body producing antibodies - even though it's well known that this particular bacteria inhibits the immune system from doing just that! And when combined with Bartonella, it's affect on the immune system is much more dramatic. Even the CDC on their Lyme web page tells us that this is still a clinical diagnosis with the test to hopefully back it up. It's the doctors that aren't following this.

" My ENT docotor gave me a script for doxy for 3 weeks because I asked for it. I am almost done with my 2nd week and I feel no different. " As I said, this is a very complex bacteria - it only replicated once every 4 - 6 weeks in the body, so 2 or 3 weeks of abx may not ever get you to that point, depending on where things where inside of your body when you started the abx. Even for those with very few symptoms and a brand new infection, the recommendation is treatment for 2 - 3 months or 2 months past the resolution of all symptoms.

Any stress can bring out more symptoms - and when you are preoccupied, you won't notice your symptoms nearly as much. So keep your stress as low as possible - as you know, stress reduces the immune response too.

Orchidrain, reading your signature and noticed you stated IV meds just one month after being bit!? Did nothing for you?

Hi Fronton, well when I finally got to the doctor I thought was going to get me well and got the IV meds I had already had about 5months of GP visits and hospital visits under my belt and hence also 5months of lyme in my body since the tick bite and oval rash. At the 5mnths, was when I was referred the Infectious disease doc he had gave me one month of AMOX then followed one month of IV Rocephin. I think when I saw him I was probably in the 2nd stage already.

Also, FYI, The reason I was going to GP's and hospitals in that time was because I had an "Oval" rash and not the tell-tale bullseye rash so I didnt think I could have lyme since it "wasnt like the picture of the bullseye" and thought something else was going on. Dumb dum dum DUMBB---I know ;-/

In hindsight though, The main problem was co-infections were not even being considered by him. I have lyme, bart, & babesia I found out through my llmd. They say if you have Co's and do not get them treated along with the lyme then you will not get well from lyme. Knowing all that I know now, this was probably the main reason why (also among being in the 2nd stage I would have probably needed a 'cyst-buster' antibiotic in conjunction and also some longer term abx--The ID doc didnt know or mention anything like that!!)

This is why sadly, the Infectious disease doctors are not recommended and llmd's are.

Whenever I think about this subject, to be honest, it always kinda makes me mad that if he had the proper knowledge to handle the "infectious disease" that I contracted...that I would be well now! *Sigh*


However I would like to mention, my mother apparently had lyme ONLY for years (no Co-infections) and that one month of Rocephin picc line set her straight! She said it was "the best she felt in years"....and she got well.


Best of health to you~~
& xx's-Courtney

Post Edited (orchid_rain) : 11/14/2014 7:38:34 PM (GMT-7)