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Posted 12/3/2008 7:49 PM (GMT 0)

Hello Everyone,

  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!

God Bless

Posted 12/3/2008 8:30 PM (GMT 0)
Kimmie: I dont want to scare you but, if you have kidney problems PLEASE quit the tylenol as it caused my mother to go into renal failure. It is not a good thing to take, and causes toxicity rapidly if your body does not detox well. I am new to this too, so I will let others anwer your questions. I do know that Igenex seems to be the lab of choice, curious what their problem was with them? Most everyone here tests with Igenex (me included). Hope you get some anwers. Take care   D

Posted 12/3/2008 11:58 PM (GMT 0)
sorry to here about your situation.we are all going through this in our own ways.i will tell you that if you tested positive for babesia you have it.my llmd said of all the co infections in lyme its the hardest to get a positive hit on.I can also tell you a good test is to get your doc to prescribe you something called malarone.If you cant get it from your doc just go to another one and say you have to go to africa for work or something.its an antimalarial drug that has been shown to work extremely well against babs.If you start feeling better then you will know.the question is where did you get the babs?do you have pets?i also think i missed it what did your igenex test say?its a little odd but not impossible to have babs and not lyme. i dont know if you are aware but lyme can show the same lesions and cysts on your mri as ms.you need to have a spinal tap done to know for sure and if you do demand that they run a pcr lyme test on your spinal fluid.this can be very helpfull.Oh yeah and by the way wormser is an idiot!!!!I have gone through this lyme nightmare for quite a while now and though i cant make you feel better i can offer advise along the way.My journey has been long and hard and have learned alot.I dont get on this forum as much as i used to its just to depressing so email me if you would like to here what i have been through.Maybe i can save you some time and money.
Posted 12/4/2008 2:16 AM (GMT 0)
Kimmiepop,

Welcome to the forum, sorry you have been through so much. You need to see a Lyme literate medical doctor(LLMD). May I ask what state you live in?
If you need a doctors referal let me know.
Posted 12/5/2008 12:32 AM (GMT 0)

Wow~ People Who understand! Thanks so much for reading my very long story!

I seen my renal doctor today and he took blood and did urine test But said He doubts I will have renal failure. Now trust Me Im not buying into the doctors and what they say around here...Its awful as They said MS years ago and I cant even count the shots and steriods Ive been on for my MS...That I truley believe is Babsia and maybe even lymes? My spinal came back negative for MS when first diagnosed! When I was a kid I lived in Detroit and worked in the market, IE selling plants and fruits and veggies from the upper up and plants from all over the world. I had a dog and she went to field trails with other dogs from all over the US. So Im sure without a doubt Ive been in a place it was available.

I have to share this with you...Im so excited I have been crying all day! I emailed Igenex labs and Told them the story and named names and what happend to me!! Igenex emailed me and they are going to help me hands on!! praise to God! Finally someone is going to help me!!! You all have no idea what this means! Im not building myself up to think I will be perfect health wise after this But darn it I will  live!! I can get some help!

I live In ARkansas and as I said Im a Detroiter so They hate some yankee butt here lol` Im very Yankee and my accent wwont let me hide it! I wouldnt anyways...lol....This state is shaped like a box for a reason! They dont leave the box ..dont think outside of the box aand they are glad to Die in the box lol~ No insults intented to anyone..Just had to much of that yankee girl and O` you need to cross the mason dixion line? Its sad.

Thanks for all the info! I will try to struggle threw the headaches..Its nuts...Your asleep and wake up screaming from the headach. trust me I have high pain tolerance to....lol....

I was shocked when I came home and looked up the doctor he wanted me to see...dr. wormser. All I found was how much he hates Igenex and articles of him bashing Igenex. Crazy that My choice of lab pissed one of dr. worsers flunkies enough to put my life on the line. So sad.

Hello To my new friends and` I will let you know what my Igenex retest says.....I know Igenex is right! But the idiot said  It dosent matter if you have taken doxicyclin for 3 months it wont effect the test.

The Cyst thing is intristing! I have some on my head....and thats where they say my lessions are?

My prayers to you all~

God Bless

Kimmie

Posted 12/5/2008 1:06 AM (GMT 0)
hey Kimmie
ok girl..I had to take notes..lol
first, yes you being on a abx will sometimes screw up your labs. IGENEX is th most sensitive lab that you can use. siince the
cdc set their bar too high.
well you sound like both of my girls. her are some suggestions for you.
Bad dreams, man, my 12 year old has them so bad she wakes up screaming every night for 4 years. I had them too.
It is like watchin a horror movie all night and ruins every day. My 12 year old says that taking zanax 5 mg had helped them for
her. I take ambien, my bad, but have bigger fish to fry right now.
Wheezing and coughing. My 5 year old is suffering with this. Seems the lyme can give you big probelms with asthma. So you
may have that now. We all do now.
So get a inhaler, and a humidifer, sp, and put the vicks stuff in it.
I am getting a enmbuizer, sp again...lol This really helps. You take a coupld of puffs and it really clears you up and gets the
400 pound man off of your chest. lol
Asthma cn be very dangerous so tackle that first.
headahes. I am sorry to say that there is not really a pill that is going to get rid of these. but they will go away with your treatment
Just do not drink, and keep an eye on the calendar and your cycle and you will see that they come before and during at that time.
get some great shades, light is going to set them off. and noise. maybe a cap too.
Your body will not handle stress as well now. so try to get rid of things that stress you out. try to surround yourself with things
things that calm you. I had my bed room paited sea foan green..lol. and soft light bulbs everywhere.
hope that helps some.
marie
Posted 12/5/2008 1:06 AM (GMT 0)
hey Kimmie
ok girl..I had to take notes..lol
first, yes you being on a abx will sometimes screw up your labs. IGENEX is th most sensitive lab that you can use. siince the
cdc set their bar too high.
well you sound like both of my girls. her are some suggestions for you.
Bad dreams, man, my 12 year old has them so bad she wakes up screaming every night for 4 years. I had them too.
It is like watchin a horror movie all night and ruins every day. My 12 year old says that taking zanax 5 mg had helped them for
her. I take ambien, my bad, but have bigger fish to fry right now.
Wheezing and coughing. My 5 year old is suffering with this. Seems the lyme can give you big probelms with asthma. So you
may have that now. We all do now.
So get a inhaler, and a humidifer, sp, and put the vicks stuff in it.
I am getting a enmbuizer, sp again...lol This really helps. You take a coupld of puffs and it really clears you up and gets the
400 pound man off of your chest. lol
Asthma cn be very dangerous so tackle that first.
headahes. I am sorry to say that there is not really a pill that is going to get rid of these. but they will go away with your treatment
Just do not drink, and keep an eye on the calendar and your cycle and you will see that they come before and during at that time.
get some great shades, light is going to set them off. and noise. maybe a cap too.
Your body will not handle stress as well now. so try to get rid of things that stress you out. try to surround yourself with things
things that calm you. I had my bed room paited sea foan green..lol. and soft light bulbs everywhere.
hope that helps some.
marie
Posted 12/5/2008 2:56 PM (GMT 0)

Wow! Thanks so much for all your words and advice!

Im so sorry to hear that Lymes has effected your family! breaks my heart!

You said something about those headaches that wow hit a nerve` Your right! I never get them and after it was over was 4 days of teeth clenching ponding pain in my head! I noticed that during that time its BAD! I meaan BAD!

See its so hard for me Because....Most of my life I thought and Believed It was Multiple Sclerosis!

Funny story.....After My nero that said he thinks its just a little MS read to me that I was posotive for Babesia...I was Overjoyed. I know I sound insane...But trust me After years of shots and Iv Steriods....and canes and so much more...It was like God broke open the sky and poured out the truth on my face!!! I was just happy to hear answer a real no well maybe or not...it was on paper that I had something wrong! And a reason what was wrong!! My doctor said  very stern...` NOW THIS DOSENT MEAN YOU DONT HAVE MS! lol` I smiled and not sure if I was laughing or not...I said sure Ok...lol..Then I said...before you diaginos someone with MS I dont see the harm in testing them for the western blot. He was kinda white...then I left. My nero has really been my only help .....I dont fault him as he wasnt the first Nero who said The MS word to me.....and started me on the steriods....

Aww` Yes the nightmares...Bless her heart.....Man I know what you mean...they are so real...and when you wake up its like your looking for the horror of them around every corner! I cant imagine being a child and having to face that...I will keep her in my prayers!

All I can say is thank you.... God bless you and your family!

Wish me luck on my 3 test? lol`

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