Let us know how you do! All good wishes -- !
thank you!!! so very much for your time . I will find one today. I know it will take awhile to get in
Ooops -- typo in the above:
as posted above:
"... BUT NO -- the doc said to me, "I would say you have Lyme disease, but you don't like sick enough to me." Gee, thanks, doc. *NOT.* "
The correct wording should be :
"...you don't LOOK sick enough to me ..." [not 'LIKE sick enough to me']"
Welcome to MedHelp Lyme --
First off, don't beat yourself up and think that you "should have thought" [as your screen name indicates]. Nobody goes looking for Lyme etc., and it's not your fault. Trust me on this one.
I'm not medically trained, but I had Lyme (note: past tense ... feeling fine now, knock wood), and have the following thoughts for your consideration:
You say: "I have muscle twitching constantly in lower legs spamatic upper legs and arms." Twitching etc. is not uncommon in those who may have Lyme ... A good Lyme doc would pay attention to this sort of symptom.
You say: "Clean emg and cleared for clinical weakness by 3 neurologist (I feel strong)." I hate to say it, but neurologists generally do NOT understand Lyme disease and tend to blow it off as a possible cause of illness.
You say: "Had 3 blood test 3x (cbc ptt..etc.). in last 6 months even lyme anti body." The Lyme antibody tests you were given may not have been as accurate as they should be ... Lyme bacteria in your body have the ability to suppress your immune system's reaction to the presence of Lyme, so the Lyme bacteria just hide in reasonably plain sight and (as a result) are not detected by your immune system. Result: an apparent negative test result, but the Lyme bacteria continue to party all the while, hiding in plain sight.
You say you were also tested for "STDs [sexually transmitted diseases] and 10 week HIV antibody all negative. All are normal.. " That's good -- no evidence of STDs or HIV.
You say that you get "red lines on my body", which could be striations and inflammation related to Lyme and any other infections the 'Lyme' ticks bring along.
You say, "I also constantly get deep 'sleep' looking lines on body from lying down(just short periods of time) or from my jeans sitting on chair.They go away after hr or so but very deep looking from any kind of pressure." Lyme bacteria flood the body with strange symptoms that are often different in different patients, and these may be reddish striations, which are sketchy red lines on the skin ... I would encourage you to discuss it with your Lyme doc.
You say: "I feel very off also.(STRESS????). Can anyone give me a clue". Lyme disease often messes with the whole endocrine (aka hormonal) system in the human body, and that can [and often does] mess with your hormones and sense of well-being. Again, be sure to tell the doc about these and other symptoms, no matter how odd the symptoms may seem.
I'm not medically trained, but I would go to see a Lyme specialist MD for a work up and testing. Lyme is a relatively new infection, and many docs are still following the old list of symptoms and tests and treatments that were adopted just a few years ago.
Other docs, however, are continuing to research and figure out how to diagnose and treat Lyme effectively. It's one of those docs that I would find ... and in fact I did: I was sick and moderately miserable for months before I saw my 20th MD. He was out of ideas about what might be ailing me, so he ran a Lyme test ... that came back positive! Yay! A diagnosis!!
... BUT NO -- the doc said to me, "I would say you have Lyme disease, but you don't like sick enough to me." Gee, thanks, doc. *NOT.*
Unfortunately many MDs still believe that Lyme is rare, hard to get, and easy to cure with a short course of doxycycline antibiotics. That was the earliest approach against Lyme, and those early docs are still practicing medicine and influencing other MDs whose patients are ailing.
To the rescue of patients, however, is a different view held by certain other MDs, who understand that Lyme is serious, not uncommon, and needs to be taken seriously in diagnosis, in order to determine what various infections you have gotten from the 'Lyme' tick.
If you do not already have full copies of any test results from your earlier doc(s), call or write to your current docs and request 'full copies of my tests since [put in a date that reaches back before you began to feel lousy] for my files." By law, I believe the docs have to give you the test results without any aggravation. I would think that you do not need to say anything more (such as saying you are going to find another doc) ... just ask for the FULL test results, and NOT the summary pages.
Then be sure to take those tests to your NEW doc. It will likely help New Doc get a jump on the situation and get you better sooner. Also, KEEP a copy of all those test results, so that you have your own personal copy of all of it ... you may need them later at some point, and the older files are when you request them, the harder for the file clerks to locate them sometimes.
Ticks carrying Lyme disease may carry a variety of infections and given them to you, including the possibility of striations (long red welts on your skin that look a bit like scratches), but not all of us get them -- so take a foto of the striations and take the foto(s) with you so your new Lyme doc can see them, since the striations may come and go over time. Cell phone fotos are usually fine.
That you feel 'very off' is not unusual ... Lyme affects different people in different ways, so listen to yourself and don't try to match up your symptoms with those of others. Lyme is tricky that way.
To find a Lyme specialist, you can post here again (start a new post: it's easier for readers to see) titled something like "Need LLMD within [___] miles of [Dearborn, Michigan] and see what you get back.
Also search online for Lyme support groups online near you, like "Lyme support group Dearborn MI" or variations on that.
Also there is a Michigan Lyme Association that can guide you to their member MDs. Just search online for "Michigan Lyme Association" with quotes around it.
And finally: choose a good Lyme doc reasonably near you, since the doc will need to see, diagnose and treat you over a likely period of several months, perhaps every two to four weeks once your are properly diagnosed and on meds. If it's a long drive, get a friend or relative to do the driving. Sounds like a hassle, but it's worth it. Trust me on that!
All good wishes to you -- let us know how we can help and how you do -- !