I have recently been "diagnosed" with Lyme (meaning I told my GP I think I have Lyme so she put me on Doxy). I have been experiencing serious symptoms for months. Basic bloodtests reveal high white blood cell count and the doctors are finally beginning to take me seriously. The symptoms I am experiencing are very unsettling and I was wondering if any of you could tell me if you think that this points to Lyme and what other diseases it could be mistaken for.
- Light-colored, round rash on chest, smaller than a dime, hard to see, no ``target'' appearance - Headache, especially in back of head - Pressure in back of head - muscle twitching, especially in lower half of bady - tingling, especially in hands and feet - easy loss of circulation in feet with tighter footwear - jaw pain - tooth sensitivity - sore throat - choking feeling in throat - light sensitivity (doxy?) - mild eye pain - heartburn, reflux? - occasional travelling joint pain, especially l. knee, lower back, wrists, ankles - consistent l. shoulder pain - muscle soreness, slow muscle recovery - neck pain - shortness of breath - pain in chest, especially behind sternum - pinching under left arm - heart feels like it is fluttering - rapid heart rate- 110-115 in evening when trying to sleep - general feeling of having had too much caffeine, shakiness, unsteadiness - skin feels as though it is burning - exhaustion - confusion, forgetfulness - dizziness - feel drunk - insomnia - unusual panic attacks and anxiety - cannot stay asleep - cannot find words, forget what am talking about - muscle weakness - symptoms come and go on an hourly or daily basis
If this does point to Lyme, does this automatically mean that I am very late stage or chronic? I am extremely scared and I don't really know what to do. I've been looking for an LLMD but other than that I am extremely concerned, especially at the prospect of the loss of cognitive ability.
Posted by CD57 (Member # 11749) on :
Absolutely this could be Lyme.
Not to worry/panic. I remember how scared I was when I found out, just like you. Just find a good LLMD (Lyme literate medical doctor) and you will be fine. Do you know how to find an LLMD? Go to www.ilads.org to find a doc...and lots of other people will come along and perhaps recommend some docs to you privately.
Posted by bettyg (Member # 6147) on :
sent you pm w/nj llmds on it check your profile for names..
check out my table o contents in newbie package links and the LONG SYMPTOMS LIST; you fall into them and/or CO-INFECTIONS! Posted by Lymeorsomething (Member # 16359) on :
That's quite a laundry list there. You came to the right place. There are many knowledgeable people here. It's a good place to start.
Posted by dmc (Member # 5102) on :
sent a PM with list of CT llmds and support group info.
Posted by AndreaU (Member # 18761) on :
Thank you all so much for your help- the doctors lists especially.
Right now I'm just trying to figure out if I should finish my course of Doxy and see what happens or if I should go straight to a specialist. Any thoughts?
Posted by onthemend (Member # 13454) on :
Right to the specialist.
I had all your symptoms, plus more, plus they only got worse.
Are you taking enough doxy? Believe it takes 300-400 daily mgs to cross the blood-brain barrier.
It takes a few months of abx at least to 'kick' LD and cos - or at least beat them into submission - an LLMD is going to be your best guide through that process, IMO. It was also very helpful to me to follow a parallel path with my PCP, eliminating MS, Lupus, etc etc - the differential diagnosis process, plus my amazing response to abx, plus my many + , ++, and +++ WB results (though never in the proper combo for CDC positive) allows me to have faith in my dx and tx plan.
Best -
onthemend
Posted by lymielauren28 (Member # 13742) on :
Go straight to an LLMD!! Do NOT waste your time with "regular" doctors. The doxy is enough for now to keep the Lyme at bay but with that list of symptoms you are gonna need very aggressive treatment, and Doxy alone just won't cut it.
Some of your symptoms also SCREAM babesia. This is a malarial type infection of the red blood cells. Two of the more common symptoms of Babesia are shortness of breath and headache in the back of the head rather than the front.
If you've never heard of Babesia, it probably sounds like some rare, foreign disease - It isn't! It's extremely common and many times comes along with Lyme. I would say 80% of the people on this board have babesia as well as Lyme.
This is why you need to see an LLMD pronto! Lyme disease isn't just Lyme disease, if you get what I'm saying. Ticks carry a whole host of diseases - Lyme, Bartonella, Babesia, Ehrlichia, etc. all of which can infect humans.
You need to be seen by someone very skilled in these diseases to make sure you're getting the proper treatment. I'm not trying to scare you, I just want you to realize the importance of proper treatment. Doxy alone is not proper treatment. I bet you're on 200 mg a day too - again, not enough.
The good news is that with proper treatment you will be fine and you will see all those symptoms you listed go away with time. Good luck and keep us posted!
Lauren
Posted by Keebler (Member # 12673) on :
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Lauren has great advice. Do not waste time or money with regular doctors.,
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Posted by Lymeorsomething (Member # 16359) on :
I agree. Find a specialist and get the right tests. Otherwise, you'll do what I did and go through 8+ docs and not get anywhere...
Posted by adamm (Member # 11910) on :
CLassic case--if you want to have any chance, you need an LLMD. This is something that's gotta be treated long-term with high doses of multiple agents, and unfortunately, corrupt public health authorities have been misinforming doctors about this for years.
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check your profile for names..