Well, my IgeneX test came back positive for Lyme. So much for the VA's bogus ELISA and WB. My Rheumo and Infectious Control wouldn't even see me.
Rheumo told me I didn't have it and IC said I was far from having it. I was diagnosed with FMS back in 96. Even then, that took close to 4yrs to get that bunk diagnosis.
I am almost betting my coinfections will be positive as well.
I am just wondering if I will get rid of the Lyme completely. Or if they will only be able to manage my symptoms. I know I am in the very late stages of this disease.
I have a lot of sleeping, mood, memory and neurological issues. Not to mention Encephilitis.I also have a Choroidtoid Nevus which has to be watched now. I just hope to GOD that doesn't turn into Glaucoma down the road.
The VA Optomatrist just told me it was a freckle. It wasn't till I looked at my records, when I saw what it was and looked it up.
If anyone can give me any advice or any hope as to wether or not I can get rid of over a decade of Lyme, let me know.
There is NOT a day that goes by that I am not sick. Posted by ByronSBell 2007 (Member # 11496) on :
Atleast you know what you are up against now, thats 50% of the battle...
I would highly recommend a LLMD that is good with IV antibiotics because that is what you are going to need since you have had it so long. I am willing to bet you have bartonella too.
Posted by KS (Member # 12549) on :
Just curious, what were your actual results....if you don't mind sharing.
Posted by Nora DeBoard (Member # 15600) on :
Actually I don't know at this time. The nurse just told me they were positive. IgeneX didn't send me the results for some reason.
They only sent me the reciept. ARGH! I will know more after tomorrow. I have an appt. tomorrow at 3pm. They called me back to get me in earlier.
She also tested me for Babs and Erilichia. I'm wondering about Barts now too. I'm also concerned about other forms of infections since I was in Europe. They have some nasty ones there.
I was next to Kieserslaughtern in Landstuhl.
Posted by kpa (Member # 12079) on :
Dear Nora,
I am sorry that you tested positive for lyme; and that you are sick every day. We believe you..
I have had lyme for 8yrs. It took 4yrs to get diagnosed. I was slowly losing ability to function over the years and had lots of nuerocognitive trouble, dehabilitating fatigue, and bad muscle weakness. I started to "nap" at 2pm and be down for the night.
I was treated with a variety of abx, based loosely on Dr. Burrasco's guidelines that you can find here under "newbies". Abx for 18 months and then supplements. I continue to do better every day. At times the progress was so slow that it was hard to percieve, but now I feel better and see symptoms dropping away by the week. I can do most things. I am up and about all day without pain or exhaustion.
As far as "getting over" the last ten years; you are to be commended for fighting and surviving to get to this point. And figuring out that the doctor had missed the eye issue.
From here, the task is "getting through" some challenging treatments that will help you get well.
Many, many people with lyme, even those undiagnosed are now "better" and living full lives. Usually with some lifestyle changes, as in diet for example, that for most of us are small potatoes after agony of severe illness.
Some people do have a very very hard time getting well. But there is no reason to think that at this point that this will be your situation.
We are learning more about this disease and Lord willing will continue to advance in knowledge on how to treat it.
I remember crying as the doctor told me that I obviously had lyme disease. It is a blow emotionally and then there is the stress of what to do.
Read read read. The information can be overwhelming and pretty scarey. But get a good lyme doctor and go after the treatment that will help you to finally start healing.
Welcome to the fight my friend. We will be here for you best as we can. Damn the torpedos full speed ahead.
Best Wishes, kpa
Posted by Larkspur (Member # 5131) on :
Yes, if you get on the right treatments with an LLMD you can totally get back to a (mostly) normal life
I had lyme undiagnosed for 30+ years - I got basically into "remission" and unfortunately went off of everything, so I had a bad relapse
But I did "get there" and will again!
Posted by princesslee (Member # 12141) on :
Nora
I too have a choroiditis Nevus in my eye!! Did you find information that this could be from lyme or co-infections? Mine was found about 2 years ago in a routine eye exam by my optician.
I am supposed to go to Wills Eye in Philadelphia, PA every 6 months, but I can't make that trip alone because you can't drive after they put you through dilating drops and take all those horrible pics of your retina (OW!).
I have no one to drive me that often, so I'm going to try and find a local opthamologist who will keep tabs on it.
I tried looking up info on it, but couldn't really find anything. If you have website on it or a link to it and lyme, I would greatly appreciate if you'd post it or send me a private message.
I'm the same as you. Suffer every day...right now having a severe headache going on 3 weeks! I've had them even longer.
Everything hurts all the time, difficult to function, even get out of bed. I was diagnosed with CFS and Fibromyalgia, when all tests came back neg. told to see a psychiatrist.
I wish you the best of luck in getting treated. I hope you can find someone to give you IV meds, I think that would be a huge help to you.
I can't afford to worry about me right now, I have a severely sick 14 yr old daughter (had it since she was 5 1/2 yrs old) and I am getting ready to pay for her second round of IV out of pocket.
Don't lose faith or hope. At least you do have a positive blood test that proves you have lyme. That in itself is a huge stepping stone for most.
I send prayers your way that you will finally get the help you need and that you will begin to have better days until you don't even remember what it was like to be sick.
Take care,
Posted by sixgoofykids (Member # 11141) on :
I was undiagnosed for 34 years, have been in treatment for 18 months and am 90% well. I was pretty completely disabled when I started treatment .... there was no such thing as a good day.
You can get better.
Posted by bettyg (Member # 6147) on :
..
38.5 years w/chronic lyme;
34 yrs. MISDIAGNOSED by 40-50 drs/specialists
dx 4 yrs. ago in july!~
Posted by Peedie (Member # 15355) on :
Nora - HI!
Here's the thing...Igenex faxes and mails the results to the doctor - never the patient (unless you are also the doctor)
Before you have your next appt. - call the office and make sure they have the report from Igenex. If not - you call Igenex 1-800-832-3200
Find out if they fax'd the report and if not - why.
This is what I had to do - it was not sent only because my DR office did not reply to their fax inquiry as to "Is this a secure line".
I called my DR Office and told them to send the reply fax to them and they sent the report right away.
They are very effecient at Igenex. I suspect your office already has a copy - but check it out.
Be sure to ask for a copy of the report. You paid for it - you need to keep a copy for future referrence.
I think I'm at 10-12 yrs.
Good Luck and Blessing to you Peedie
Posted by Lymetoo (Member # 743) on :
HI Nora!!
Make sure you get a copy of that test!!
I had Lyme 42 yrs before being dxd.. may have had it since birth... don't know.
Anyway, I'm on 50 yrs now that I've had Lyme. [dxd 8 yrs ago]
Read my story when you get a chance. I think it will comfort you to know that you CAN win this battle!!
Posted by Nora DeBoard (Member # 15600) on :
Thank you all very much for your suport.
I am just glad I could fly out yesterday to make my appointment with my doctor today at 3pm. My parents live 15mi. away from her office.
I could NOT drive 5hrs to see her. Not with nagging headache, neck pain , leg pain and knee pain. There is NO WAY! It does suck when you are going on two weeks of a constant headache.
I will post that link to the Chortoid Nevus as soon as I can find it. I am at my parent's house now.
Also got a call from the lady I e-mailed last year in reguards to the mold issue in my apartment, and how sick it made me.
She wanted to know if I still wanted to file a formal complaint. I was like, H*** yes! I told her about me recent diagnosis of Lyme too.
She said that was horrible and that definately made me sicker being there. This will definately help my lawsuit against that apartment.
Especially since they KNEW I had Bronchitis, my apartment was damp inside and the carpet was damp. Not only did it have mold in the HVAC but the mold specialist put in his report that it had SBS (Sick Building Syndrome).
I actually had black stuff comming up through my cement on my patio. It was everywhere in the complex. It was MOLD! Dr. S says that toxic mold includes: Caladiosporum , Penicillium and Aspergilius.
Which were ALL found in my apartment. In levels of 33,000!!! Posted by keltyl (Member # 14050) on :
This post answers a question I was going to ask about today.
I thought I was probably the oldest (58 very shortly), and at least 40 yrs. undiagnosed. I figure by now every inch of my body is infected.
I haven't given up hope, but there are days when it's hard not to have negative thoughts because of my age.
I am just beginning also, appoint. Aug 5th. Have only been treated with doxy by someone who claimed he knew how to treat Lyme.
![[Roll Eyes]](rolleyes.gif)
It wasn't till I looked at my records, when I saw what it was and looked it up. ![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)
![[Eek!]](eek.gif)
There is NO WAY! It does suck when you are going on two weeks of a constant headache.