LYMES?? PLEASE HELP!!!

[skarey]

Hello everyone,
   I've been posting on several other forums (MS, and FIBRO).  I've been having very strage uncomfortable symptoms that have been going on on and off for a year and a half.  Many people on the other  forums have mentioned that my sx sound very much like Lymes Disease.  So here I am!!  
  Here is my sx and story...

Starting in May 07 (2months after birth of child) I started having mild numbness/pinsnneedles in toes/feet.  Also around the same time I was getting horrible arm/hand pain (felt like shooting pain, like hitting funny bone).  My hands would tingle as well.  My neck and shoulders always felt achy and sore (I just assumed this was tension/stress).  I also was occasionally dizzy and weak.  My feet and legs hurt, and my eyes and ears were really achy.   And I had  twitching (all over my body), and I started having really bad anxiety especially at night. I also noticed that I would have weird sensations like cold liquid was running down my legs, cold numb patches on face, and it would feel like I had something stuck between my toe or to the bottom of my feet.  Also I had bad brain fog... I couldn't remember anything and felt spaced out.
   I saw my dr who referred me to a neuro.  After blood work, neuro exam, and MRI's I was told it was not neurological. MS was one of my biggest concerns.  I was told to see a Rheum. and an ENT (my MRI showed severe sinus disease).  I got into the ENT whosaid my sinuses were very bad and that I should have surgery..
I was sick with these symptoms for 4-5 months.  I had good and bad days.  The symptoms kinda were up and  down.  
   Then for 1.5 years I felt really well.  I did occasionally find that my feet hurt and arms would hurt sometimes and that my neck and shoulders were still achy, but just kinda ignored it.   The anxiety continued on and off, and I coudn't find a cause for it.
   Well now 1.5 years later, out of nowhere my toes became mildly numb on left side (on and off).  Then I began getting the bad arm/hand pain, leg pain, twitching, ears hurt, dizziness (like I'm rocking),pins and needles in arms and hands (especially at night) and very very weak and fatigued.  I have no energy at all!  My feet are always cold, I feel that i have a bladder infection (but show negative for UTI), I'm also having horrible brain fog again!  I feel like I'm losing my mind sometimes! Very forgetful and just spacey. This all happened like that.  I ended up seeing a neuro again.  And again... normal brain and cspine mri (except showing the sinus disease still), normal xrays, normal ct's.  My neuro exam was normal (except have brisk reflexes).  So still they don't think it is neurological.   So my dr is referring me to a ENT again (for the sinus disease), and a rheum.
    It is so strange though cause one day i'll feel half way normal and then the next day I'll feel like I got ran over by a truck.  It is so up and down.  
  I have my appt tomorrow with the rheum. so hopefully he'll be able to answer some questions.
  Thank you so much for all your help!   I really look forward to hearing what everyone thinks!

  skarey  

[Catee]

I read your comments over on MS.

You know, it is possible that someone read one of your tests incorrectly.  My husband has R. Arthritis.  He's had it for years.  His symptoms are only partly like yours, but only partly.  And his mother had Lupus.  The two things sometimes run in the same family.

Have you seen a psychiatrist?  Please do not take that as an insult.  There are physical responses that go along with depression, anxiety, etc.  After all of this time you may well be stressed.  Do you take antidepressants or anti-anxiety meds.  Prozac, when it was first on the market, gave me many symptoms like you.  Especially wide jerking movements.

I believe you've already been tested for diabetes, but ask you primary doctor if he will run a "fasting Hemoglobin A1c" for you.  That will tell him/her how your blood sugar has been doing over the past three months.  (Btw,

[gorbybelle]

if you google this: patients_help***@****   -  you can ask questions about lyme literate doctors, etc;       I found a doctor in Cardiff - David Owen - I have made an appointment for early April.  You can just google his name.  Best Wishes

[skarey]

Thanks everyone!
   Does anyone know much about the UK and Lyme disease?  If I do have Lymes I would've got it in the US (OK or poss CO), but we live in the UK now.
   I guess I'll ask the Rheum. tomorrow.  What Dr has the most experience with Lymes?  Can my Rheum Dx it?  How do I make sure the testing is adequate?  Our labs are taken from a military facility here and I honestly don't think they are very good.  Does anyone know where in the UK I could get good labs done for Lymes?  
  Anyways wish me luck tomorrow!  I'll keep you posted!

[patsy10]

I responded to your post on the CFS/FMS forum and concur with Amyloo and SOONERMOM.

[SOONERMOM]

Hi!  I also answered you on the MS forum.  I forgot to add that my MRI's also showed sinus issues.  They called it abnormal mucosal thickening.  I had sinus issues the whole time that I was undiganosed (since they found brain lesions, I never got that ENT referral).  I pretty much had blood (of some sort) coming from my nose daily for months.  Chronic sinus infections is listed as a symptom of lyme disease.

It finally took an urgent care doctor to see that I had an infection and he gave me an antibiotic.  My husband commented on how much "better" I seemed in general.  It wasn't too long after that when my IgeneX test came back positive and it all made sense!!

I think all of us have good and bad days!!  I hope you have a good appointment with the rheum.  The one I went to looked at my files and told me that I had MS!!!  WHAT???   lol ...It was Valentines day a year ago and I sat there in her office and bawled like a baby!!   I guess I have learned that doctors don't know EVERYTHING and I am ultimately responsible for my own health.  Unfortunately, most doctors are not that knowledgeable about lyme disease and what it can do in a late stage infection.

You owe it to yourself to get that western blot run!!  take care and let us know what you find out!

Stacey

[Amyloo]

Hi,  I think I answered you on the MS forum.  I would urge you to find a doctor knowledgable in Lyme disease.  You would need to have a proper Western Blot done, to look for Lyme antibodies in your blood.  There are many labs that will run the test, but only a couple that specialize in tick bourne illness.

I spent many years being treated for multiple things (myofascial pain syndrome, fibro, MS) before I found out I had Lyme.  God bless you, Amy