lyme, or no?

[brandycolwell]

ok, so for me it all started in one day. 2-3 weeks after the flu and mono, i woke up, had a hard time turning my head to the right, little spasms in my neck that would pull my neck to the left. what i thought was weakness in my arms and legs, but now im not sure, its so hard to explain..when i lift my arms and legs they shake, but i can still all the things i need to. its like the muscles cant relax or something. twitches EVERYWHERE. i have been so worried about ALS. but from what i have read, it doesnt start this way.

  i have seen a neuro, who said cervical dystonia with tremors, but im so not buying it. that doesnt start this way either, at all. and all literature says that if you present with other neuro symptoms that the cervcal dysonia is almost alwys secondary.
i also have these wierd feelings of burning under my skin, so stranfe. my joints sometimes feel so irritated, like a cold but warm burning, and if i stretch my legs out, then straighten them, its so painfull..

the tests i have had that camr back out of range where as follow :
low b12
low ferritin
low vitamin d
hypothyroid
low creatinine

i have been treated for over 7 months for all things listed above, without ANY improvement, at all.. im so frustrated. im only 30, i have 3 small kids (who are my whole world)..i really need to get back to who i was before all of this. any help is so very appreciated. i guess my main question is, does this sound like lyme disease?? has anyone had these type of symptoms that started so fast?

[brandycolwell]

ree- did you have twitches, and shaking in arms and legs??

[brandycolwell]

thank you so much for all you said. given that your symptoms started like mine, i have hope. im pushing forward and making them test me, im paying for it, so why the heck not!

[JackieCalifornia]

Sorry to hear you're having such a rough time.  Good for you for keeping an open and critical mind about what you are hearing from your docs.

To find an LLMD as Ree says, try searching/googling

LLMD louisville KY

or go to www [dot] lymenet [dot] org, which has links to local Lyme patient groups, and they can often give you hints on local docs who are wise.  LLMD is not, by the way, an official title ... we Lyme patients just use it to tag a doc who understands Lyme and knows how to deal with it, unlike most docs.

I just went to lymenet and there were three links for various parts of KY.  

There are also other websites with similar functions.  If you need help, let us know.

I would do exactly what you are doing.  Take care!  Stay in touch.

[ree427]

My symptoms also began with flu-like symptoms and neck spasms which would pull my neck to one side. I also have the low B12, low ferritin, low vitamin D and hypothyroid. To my knowledge, all of these are commonly low with Lyme and/or co-infections.  I am not sure about creatinine. I also had the muscle twitches everywhere. So far I know for sure I have the co-infections of Bartonella, Mycoplasma, and Ehrlichia. All my Lyme tests have been negative, but I am not convinced I don't have Lyme in addition to the co-infections.
Lyme would be definately worth investigating in your case. Seeing a Lyme-Literate MD (LLMD) is your best bet. A LLMD knows how to give a thorough evaluation when it comes to Lyme and co-infections and knows the ins and outs of treatment.

[brandycolwell]

wishing that i would have proof read..lol