posted
During the summer of '09, I was living in New York City- being 25 years old, i like to do a lot of outdoor activities. One day, I noticed a rash on my left arm...and initially I though it may have been an allergic reaction..but weirdly, this rash lasted for 3 weeks. Since I have dark skin, I wasnt able to notice the classic "bulls-eye rash" but it looked like a bruise.
After 3 weeks, the rash went away ..and then all of a sudden, I had flu like symptoms- headache, fatigue, coughing, etc. When those symptoms subsided, i noticed a small muscle twitch in my left eye lid. Since I knew that muscle twitches were common (especially in eyes, I ignored it). I also had these new panic attack/heart palpitations/sweating that would randomly happen in the middle of the night (but those only lasted a couple weeks).
Two weeks later, the tingling started. When the tingling started, it would only happen when I laying down..attempting to go to sleep. The tingling annoyed the hell out of me for weeks and then I started getting another muscle spasm...this time extremely intense and it was where the rash was (and left a scar).
After the tingling went away, I suffered from severe itching (in my legs only). Then came the eye pain, the tremors (which get worse after working out), and the throbbing sensation that goes through my whole body.
Now, I have all of the aformentioned symptoms (including a minor eye misalignment). I have been to several doctors and 4 emergency room visits and I have been told in so many ways that im crazy or that im in perfect health. I have a neurology appt scheduled for Tues. and im also on the quest for a lyme doctor in DC.
For those of you have been diagnosed, do my symptoms sound like something you've gone through?
Posts: 4 | From Pianist | Registered: Feb 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I think you have given a great description of lyme disease, based on your symptoms.
And, when you start going to several doctors and emergency rooms and they tell you in so many ways that you are crazy, that confirms the lyme diagnosis.
This is what we all heard until we found out it was lyme disease and got to a lyme doc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
It's really important to see a Lyme doctor. I ended up in the emergency 4 times. I knew at this time that I had Lyme because someone mentioned it to me and I looked up the bite and the bug on the internet. I remembered being bitten 1 1/2 years earlier. We had to force the doctor in the ER to take a blood test for Lyme. All of the doctors thought I was completely crazy. I live in Southern CA and the ER docs told me there was no possible way I had Lyme. Thankfully, my Elisa test came back positive. I got some Doxy just in the nick of time.
The worst part is this disease effects your brain. The more people tell you that you are crazy the more crazy you become, because you know that you are not crazy.
I don't know if that made any sense.
The point is - get an LLMD. They will understand.
Posts: 2232 | From USA | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, be prepared to be treated very poorly by the neurologist. That is par for the course for a lyme patient.
Infectious disease docs and neurologists treat us terribly.
Posts: 9931 | From Maryland | Registered: Dec 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
wow, that sounds classic. I also got it in NYC area, and my rash was atypical- that's quite common, whether it's your skin color or not that makes it non-obvious. (I'd recommend that if you talk to doctors who are NOT lyme-literate, you just go ahead and describe it as a bulls-eye rash, because some of them will pounce all over the 'it looked like a bruise' part). In reality, it often doesn't look like a classic bulls-eye- but not everyone and not all doctors know that.
The timing of your symptom progression that you're describing sounds a lot like what I experienced, too.
Sounds like you got a few names from the forum, just be prepared for it to cost a lot. Unfortunately that's what it takes, for a wide variety of political reasons, there are very few Lyme doctors and they're often under fire by medical boards and insurance companies for 'overtreating'.
-------------------- Symptom Free!!! Thank you all!!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I am struck by the irony of how often people realize they have Lyme precisely because many doctors are quick to assure them there is nothing wrong with their body (in spite of their obvious symptoms),
and all the diagnostic tests come back "normal" (a big clue that you might have Lyme),
while the same doctors are quick to say there is definitely something wrong with their sanity, in spite of any evidence of that, and
the fact that those doctors are not psychiatrists.
And ID docs who tell people they never had Lyme at all, but the three weeks of doxy they just took has completely cured the Lyme they never had.
How can they claim they cure it 100% of the time in people who never had it?
You're not the one who is "crazy."
To answer your question, I have not had all the symptoms you mention, but I did get flu symptoms at first, and I have had an occasional twitch in my left eyelid and once in while on my cheek under my right eye.
I have been diagnosed with Lyme by an LLMD. My main symptoms have been joint/muscle pain, fatigue, and hormonal and emotional issues. My symptoms seem to be milder than what many people describe on this board.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Exactly my story. Lived in NYC at the time. Went through 15 yrs of misdiagnosis and hell.
Save yourself the horror and find a very good LLMD pronto. The longer you wait, the longer you will suffer. Do what the LLMD says and you have a good chance of getting well quickly.
Posts: 770 | From USA | Registered: Jul 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Wow, I didn't realize there was still stupidity about lyme in NYC? Your post is a-typical lyme experience.
You might want to consider a anti-depressant after you go through all the crap of dealing with lyme illiterate docs. Find you a lyme literate doc and save yourself the trouble.
Good luck, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
map1131 there is NON STOP stupidity about lyme in NYC!!!!! Like 40 doctors worth over the course of 4 years-- no one could figure it out or they didn't want to. Total firewall. For me, anyway.
Mrkennyp, others are right. Based on my own experience, the neurologist will probably treat you very poorly. He/she will either shrug and blink at you OR will tell you to ignore your symptoms and go to a shrink. Cancel if you can--it's gonna be a time and money waster.
PLEASE find an LLMD asap. PM me if you want a recommendation. There's a great one in Maryland.
Oh yeah and what you describe sounds exactly like lyme and probably bartonella, another illness ticks like to dole out.
Please try to do as much self care while you wait for your appointment with an LLMD--it can take 3 months. Try to get on the cancellation list, if there is one. A super healthy diet, supplements, and plenty of sleep. This is good to read: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
YOU ARE NOT CRAZY!!! If you want to know why you're being given this impression watch the documentary film Under Our Skin.
Oh and get a proper test--the typical eliza and western blots aren't sufficient. IgeneX is the place to go. And whatever you do, don't go to an infectious disease doctor, I'm beggin' ya!
GOOD LUCK and take care of yourself no matter what anyone says!
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Don't forget to always get copies of all tests and
pics of any rashes. Good Luck finding the best LLMD.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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