I've been at this f o r e v e r, so if I may so boldly answer some questions within your post in red. But, before that, please find a GOOD Infectious disease doctor who is literate in Lyme disease and/or at least willing to test you for Lyme Disease. Insists on using Igenex Lab in California. It's a simple 2 or 3 tier blood test. The will tests ELISA and if that is positive, then they will test your IGG and then IGM levels. Sometimes, if the ELISA is negative, labs just skip the rest of the test. Lyme disease testing is still precarious at best, so even a negative can be "wrong"...... this disease sucks wind.
Firstly, I'm 22. My symptoms started on the December 08, 2008. A week and a half prior to this, I would for the first time in my life start getting one leg jerk right before I fell asleep. So on the 8th, I randomly felt a heaviness or tightness in my both my right and left forearms. In addition, I got a strange empty feeling in my calves, as if not enough blood was reaching them.
In the beginning all of the symptoms are "bizarre" and out of the ordinary. You don't know if it's a qwerk thing, or if your making too big of a deal about something. I think we all start off this way.
My symptoms over time however have changed. There has not been a feeling my calves for a month but rather a ticklish/sensitive feeling on the inside of my ankles along with the front of my feet that come and go. A symptom of LD is that the symptoms continue to change and move around.
The feeling of tightness/heaviness is less of my forearm for the past two months but more in my wrist and my hand. The feeling inside my hands at times is sensitive on the inside and if I relax my wrist/hand in certain positions, certain fingers will shake. Please be checked for other diseases like Parkinson's.... but don't ignore any LD testing. I have had sever bouts of carpal tunnel as a part of my myriad of LD symptoms over the years.
At random points now I get a mild numbness in my lower right palm into my base of my pinky finger which eventually subsides. Every couple weeks, my hands get randomly pretty cold for no reason as well. This may be something called "Renaud's". It happens to a lot of LD patiets. fingers and toes freeze and turn white.
My symptoms always feel worse in the morning, especially around my kneecaps and thighs. This is how my symptoms began. In the knees and hips.
So, when I first went as an inpatient I had abnormally low vitamin d
. Of course, doctors as many are looking for a quick diagnosis said "Low Vitamin D levels, get out of here". Ok then I guess. Did a blood test a short while later and Vit D was normal. I believe a Vit D deficiency can be addressed by approx 20 minutes in the sun.
I saw the first neurologist - So I went for a second opinion. - onto the neurosurgeon - My final visit with a neurosurgeon - went to a Rheumatologist - I then went to a second rheumatologist with the same type of story.
And finally, if you've seen way too many doctors with absolutely no medical direction.... you probably have LD. I was sick for 13 months before I was finally tested for LD. It was positive. The very next dr. I saw said it was a "false positive"...... 4 months later, when I found a doctor to treat me, he wrote me an RX for 200mg doxycicline 2x a day. 13 months of pure h*** for doxycycline!
Some IMPORTANT side notes are:
I moved into a new apartment in October so who knows what is/was in here.
I inhaled two times liquid from China. Before you go "huh?" there is a device called an e-cigarette. Basically, it vaporizes liquid in a device which looks like a cigarette and acts like a cigarette. The liquid however came from China. I inhaled this two or three weeks before my symptoms began.
I have had a rash that comes and goes due to bacteria on my chest. Sometimes it spreads to half of my chest so I half to put ointment on. I have a skin
virus that does not go away in one area and will need plastic surgery.
So after all of this I am left with nothing, no doctor really cares. Heck, I even went to a hypnotist but am utterly lost. I don't know if it will be a waste of time to see a Lyme doctor as I am not 100 percent sure this is Lyme. I don't even know if these is such thing as a doctor who is knowledgeable (if it's not Lyme) with odd viruses or fungus or just bacteria/infections.
Please get tested for Lyme disease.
All the best.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has. - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01).
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg