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Old 03-27-2012, 10:21 AM   #1
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Bellasmom1 HB User
Do my symptoms fit lyme disease?

Hello everybody, I have been on many different boards throught the past and I am writing on this one because we have reason to believe I may be infected with lyme disease. It all started March 8, 2011 and I will never forget the day, I was walking on campus at my college and felt this extreme feeling of "dizziness", i figured it was probably because I had not eaten breakfast so I sat down on the bench for a moment. Well that feeling never went away and I am here today still suffering everyday, here are my symptoms. I am a 24 year old female, in Troy, New York.


1. off balance feeling 24 hours a day, 7 days a week, not vertigo or dizziness
2. When I lay down or stand up still, it feels like I am motion sick, as if my legs are moving when I clearly knwo they are not.
3. extreme fatigue
4. pain in my legs randomly for no apparent reason, on and off not all the time.
5. low grade fevers every few weeks.
6. I always feel like I have a cold, I constantly eat cough drops for my sore throat.
7. My heart sometimes feels like its fluttering.
8. Some difficulty thinking at times.
9. Headaches, just about every day.
10. Twitches in the left side of my face(eye, lip, and temple)
11. My body constantly feels achy and tired
12. I have this strange feelign of being apart from the normal world, if that makes sense.
13. I have constant pain in my neck, especially with the headaches
14. I have jaw pain on a daily basis
15. Tingling in my back only.
16. Mood swings, one minute I can be happy and another I am sad and angry.
17. Ringing in ears.
18. Depression
19. I used to love to have a few drinks with friends, not anymore I either get extremely drunk from one drink or feel horrible the next day.
20. Strange shaking/vibrating feeling in my legs, worse after activities.
21. Strange vision problems, blurry vision, pain in eyes, jumpy objects.
22. My back locks up to the point where I have to go to the emergency room for them to give me a shot of an extremely high dose of an anti-inflammatory to get it unlocked.
I could go on and on but can not thing of anymore at this moment. I have just about all of these symptoms on a daily basis. I had to drop out of school and work part time.

I have seen:
2 neurologists
2 ents
3 optimologist
cardiologist
infectious disease doctor
sleep center
PCP

I have had ct and mri with contrast of brain, mri of cervical spine, bloodwork, ekg, holter monitor, ultrasound of thyroid, echocardiogram when fluid was found around my heart, eng, allergry testing, ana and epstein bar bloodwork, lyme bloodwork, tilt table test, etc.... Everything came back normal except they found residual epstein barr in my system because I had it when I was 17 but it is not active. I am now waiting to see a rhemotologist april 5th, praying he has some anwers. These doctors all think I am crazy!!

I have been treated for anxiety by 3 different doctors and all of the meds make me feel anxious so they did not work.
I have tried meclizine and transdermal scope patch for the constant balance/ motion sickness.
Physical therapy for what they thought was vertigo.
Migraine medicine( taper pack with medrol)

Nothing seemed to help me at all!!!

My mother was recently at the hairdresser when she over heard a lady talking about how her daughter was really sick for 2 years and every doctor said she was fine, well come to find out she had the same exact symptoms as me and finally a doctor though to do A PCR test for lyme disease and it came back POSITIVE!!! She was treated for it and feeks much better today!!


Is it possible this could be the answer to all of my problems, any thought would be greatly appreciated!!!!
I am hopeless at this point that the rhemotologist will be helpful to me because every doctor says this is just something I am going to have to learn to cope with!!!

I also just spend $500 at a tmj specialist because all these doctors assured me it was tmj that was causing my symptoms, well needless to say he laughed at me!!!

PLEASE HELP!!

 
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Old 03-28-2012, 08:03 AM   #2
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Re: Do my symptoms fit lyme disease?

Hi Bellasmom...yes sounds like lyme. Only way to rule it in or out is seeing a LLMD....Lyme Literate medical Doctor...

There are a couple threads above, How to share doctors names and Lyme Newbies...those should help direct you.

you can find info for Igenex lab from where you are sitting. Would be wise to request a lyme kit take it to your doc have him sign off for the blood work. Testing for Lyme is not 100% accurate...so test and Lyme doc is a necessity...

Hope you find your answers soon!

Jodie

 
Old 03-28-2012, 08:17 PM   #3
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Re: Do my symptoms fit lyme disease?

Bellasmo:
I have very similar symptoms for yrs. i have been to all the drs that you have been to and had all the testing. I still have no answers. I did have my blood work sent to Igenix. I had 2 positive bands and 2 indeterminate. The did not consider the results to be positive. I still have not seen a LLMD yet. I am holding out because they charge so much. I have spend a fortune on natural drs already and thousands on supplements. To no avail. One of my issues also is that i don't want to take all those antibiotics if i am not sure if i need them. I also have candida and am trying to treat that. Also not getting to far with that either. It is a losing battle. I do suggest that you at least get your blood work to Igenix. Good luck and keep us posted. LaLa

 
Old 03-31-2012, 02:53 PM   #4
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Location: Monroe, NY
Posts: 65
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Re: Do my symptoms fit lyme disease?

Yes, this sounds like many of the stories that I have heard. You HAVE Lyme & most likely some of the coinfections that Lyme is known to bestow.

Don't rely on a regular physician and take the suggestion of going to a LLMD. Besides asking on these boards you can look up for a local Lyme support group. Give them a call & they can provide you with a LLMD phone number.

From my investigation this is really turning into a GLOBAL EPIDEMIC. Unfortunately, mainstrain has not caught up yet & it is difficult for people to imagine such symptoms from such a small creature. Testing for it is horrific and it is difficult to get the sympathy and support that you truly need.

Today I just found out that the doctor who refused to give me IV Doxy, but gave me Diamox instead, is now developing Lyme symptoms. When I pleaded and vowed that I have Lyme, although the tests were negative I was turned away. Perhaps this is what is needed exactly, for them to contract it and discover the truth. The truth runs far deeper than just Lyme, it exposes our incompetence and irresponsibility on so many different levels. Not just with the Lyme bacteria, but with many bacteria that indivuduals are affected with and go on with a diagnosis and treating symptoms and not the cause.

 
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