my painful story

[Lillyth]

Originally Posted by JeffR

I have a friend who is suffering from some sort of auto-immune issue. Lyme test are definitely unreliable, i.e. you can have false negatives and positives and can have one marker be positive and another be negative. :/

What kind? I am quite the fount of knowledge on auto-immune disorders. Maybe I can help?

[adrigail]

Mike,

Are you having any side affects from the Gabapentin? I was on it for several months and it had me in a fog like state. It would take an hour in the morning for me to get out of bed and get my head in gear to start the day. My Physiatrist switched me to Lyrica and Cymbalta on lower doses in combination and the foggy/zombie feeling went away. The pain control wasn't quite as good buy I can get through a day of work without feeling like I'm in lala land.
Just a tip if you start feeling groggy.

[MikeC]

Originally Posted by adrigail

Mike,

Are you having any side affects from the Gabapentin? I was on it for several months and it had me in a fog like state. It would take an hour in the morning for me to get out of bed and get my head in gear to start the day. My Physiatrist switched me to Lyrica and Cymbalta on lower doses in combination and the foggy/zombie feeling went away. The pain control wasn't quite as good buy I can get through a day of work without feeling like I'm in lala land.
Just a tip if you start feeling groggy.

Hi Adrigail, now that you mention it, I am a zombie in the morning until I get enough caffeine flowing in my veins! If I think about it, it might make me a bit giddy during the day.

I had to do battle with my insurance company in the past when the physiatrist prescribed Lyrica. I finally won but had to buy it through Medco. I felt that I had some weight gain so I stopped the Lyrica. I changed physiatrists as the first one was alway too hard to get an appointment with, and the new one suggested Neuronitin (Gabapentin).

So I do see some improvement, maybe I have some weight gain but I stopped going to the gym when're they have a medical scale, so it is only through observation. I was thinking of a combination ADR and liposuction! Just kidding. You see, the Gabapentin make me silly.

Did I answer your comments? By the way, who did your ADR at L4-5? Best regards, Mike

[adrigail]

I haven't had my ADR....yet.
I was scheduled on Nov. but cancelled to continue conservative therapy. I am in the process of re-scheduling for sometime late spring. Our business is very slow July-August and would be a good time for me to be out of commission.
Dr. Edwin Donner in Loveland Colorado will be the surgeon.

[JeffR]

Originally Posted by Lillyth

What kind? I am quite the fount of knowledge on auto-immune disorders. Maybe I can help?

He doesn't know what it is he got tested for Lyme and it was positive but he had another test and it was negative. He does have collitis and he is really tired all the time and other assorted symptoms.

[Harrison]

For what it's worth, Lyme disease testing is tricky. One of the better labs that regionalizes their test assays (for different microbial strains) is:

Welcome to IGeneX, Inc.

They also test for many other kinds of bacteria that can be carried by the ticks (bartonella, babesia, etc.). Those co-infection by themselves can cause DDD and have been found in spinal discs. I don't think they test for protozoa and other tiny creatures that have been found in many patients with DDD.

A potentially flawed blood test (or truly negative test result) is only one data point for a doctor -- a trained professional that understands Lyme disease uses a thorough patient evaluation to come up with a clinical diagnosis. It's not just a blood test. See:

http://www.ilads.org/

Once bugs get into the blood, they don't just sit around and wait to be gobbled up by the immune response. Many gram negative bugs actually "feed" off the immune response! They have thousands of defensive and offensive survival mechanisms, which is why blood tests don't always hold the answer -- especially if they are based on culturing.

Thankfully, newer molecular diagnostics are getting better every day and telling us stories we never thought imaginable.

[Lillyth]

Originally Posted by JeffR

He doesn't know what it is he got tested for Lyme and it was positive but he had another test and it was negative. He does have collitis and he is really tired all the time and other assorted symptoms.

If it is Lyme, have your friend contact my Reproductive Endocrinologist, Dr. Andrew Cook, in Los Gatos. If he can't find it, it's not there.

Colitis and the exhaustion can both be indicative of celiac, and in fact, often are. Depending on the other symptoms, it could also be Lupus, or any number of things. I'm going to pm you my personal email address, that way you can pass it along to your friend. I am happy to help him if I can, or if I can't, I will find someone in my myriad of friends who can. I think between me and my facebook friends we have every single auto immune disease on the planet!

[MikeC]

Originally Posted by TPatti

Dr. Dare in England had told me that he would decide on one of levels being a fusion or adr during operation as well. He said it would depend on much much movement he was able to get.

How much is the Zeegers consult?

Thanks for the update on Dr Zeegers. I am curious to know how detailed is the diagnosis. e quote me €620 as I recall (620 euros) which is a bit pricey as you say, but might be well worth it. I am seeing physiatrist again this morning, the advantage is that ships is lass than one mile from my home and keeps me going for the moment with 2,499 mg of Neurontin a day. To be continued...

[newleaseonlife]

Originally Posted by MikeC

Thanks for the update on Dr Zeegers. I am curious to know how detailed is the diagnosis. e quote me €620 as I recall (620 euros) which is a bit pricey as you say, but might be well worth it. I am seeing physiatrist again this morning, the advantage is that ships is lass than one mile from my home and keeps me going for the moment with 2,499 mg of Neurontin a day. To be continued...

Mike, I am so sorry that you are having to go through this. I was on Gabapentin/Neurontin for 2+ years. It was hard for me to have a normal conversation while I was on it. The stuff made me loopy. I found that if I could keep my hands busy doing something while talking, it smoothed out my conversation and allowed me better focus. I can't tell you how many knitted/crocheted scarves and hats I now own. LOL!!

That being said, there are overseas ADR surgeons that offer free MRI reviews. 620 euros for a consult can really add up. I'd be happy to tell you more about my ADR experience if you'd like. Feel free to drop me a PM.