Im in need of Help and as we all know` It seems us patients help ourselfs more then the doctors do! I want to share my story and Im in great hope some of you may have some suggestions for me..Im sick and not doing well so please forgive my spelling and order of my story
I was told at 18 I had MS after a problem with my eyes and a mri exam. Im almost 40 now and this past 7 years has been misrable for me. Some new and strange things started happening.....Hair Loss, Fevers, Chills, Kidney problems, Breathing problems,Bleeding..Healing slow, bruising on and on...I was in the hospital doing Iv steriods 3 days a month to fight my MS. After 6 months and not much improvment I asked for a spinal mri. The results were Posotive for MS, But My nero took the tests to his hospital and they said they see NO ms. So we have 2 radiologists that disagree. My nero said well its like you have a little ms. I was livid..I said thats like being a little pregnet lol..... I went searching the internet. I came across tons of info on lymes and found the western blot test....I figured I had nothing to loose and everything to gain! So I took the test using Igenex labs. My next doctors app was a month after the test. So I waited. My hairloss was bad and I was like haveing this strange smell and olily feel on my hair never had before? My face was breaking out and It was not healing and seemed to be spreading around my hairline and ears. I went to the dermatoligist and he was stummed! he put me on 3 months of doxicicolin 100 mg a day. I noticed after 2 weeks faced and rash cleared and hairloss stopped in 3 weeks! I went to my doctors app. he said well you dont have lymes BUT YOU HAVE TESTED POSOTIVE FOR BABESIA? I said Ok...great...Now what is it and what can we do. You got to understand I was excited to learn anything aat this point! He said he had no clue what babesia was and I would have to see a infectiouse doctor. So I had my first app with this so called doctor.....he said Igenex is not trust worthy. I argued with him saying its good enough for the cdc and They come highly recomended! He said No.He would test me using the mayo clinic in wisconsin. He said I probabbly didnt have it because I did not live in new york? I was asked were I lived I have lived all my life in Detriot and traveled as a child into canada and all over. So I did his test.....He was very angry that I was on doxicicolin! He was so mad asking why am i on it for the babesia I said no...and explianed the dermos actions for the use of the drug.
Well my test came back...he said I dont have babesia......Then he said after I kept asking...Ok Ive been off the antibiotics 3 weeks and Im weezing again and bad dreams...sweats....dizzy bad!...He said I needed to see someone with more expierenice! Said I need to see a doctor worsmer in new york city that he is the best out there! I said Hey...I cant I have no $ and My health is so poor I coulddnt do it if I had the money. He said that was my only hope. That was it ....I saaid can we retest as Maybe the drugs interfered with the test? He said No you must see Doctor Worser in new york.
I left in tears......I looked it up and this stupid doctor worser who he cliams is God....Has a problem with Igenex? So Im assuming the doctor had a attitude with me before i got there because of the lab we chose......
I live in a Very Rural state and I called Igenex for one of thier doctors thier is NONE in my state! So I called My nero and he has a call into the university to see about another doctor........Im waiting...But I can tell things are bad health wise....
So My new friends here are a few of my questions....Please forgive my stupidity Im new with this....
Could the Doxicyclin have a negative effect on my wester blot test?
Is there anything I can do NOW for my Renal problems? Im drinking 2 gallons cranberry juice a day to relieve the pain.
The bad dreams? They are cray aand getting out of hand...any tricks or tips?
Wheezing and coughing.......Any tips?
Ive been waking up with pounding headaches? I never get them so this is new? Been doing tylenol? Any tips?
The ache in the middle of my chest...What is it? It hurts on and off and when i move my arms sometimes.
I see my renal doctor tomm. and will tell him the story and he wont know the diease But Wondering is there anything to help for now that wont effect me when the new doctor wants to test again.....
Its so nice to meet everyone and I want to thank you in advance for reading my problem and any words you may share!