I've been on orals for several years and never really felt them doing anything except maybe side-effects.
Now I'm on IV Rocephin + cyst busters. I feel worse most of the time though my nerves are starting to hurt at a pretty annoying level in arms, hands, feet(Flagyl?). Its been a month and my insurance covers 3 months of the IV and then I'm on my own and must either pull it out or pay myself.
How many of you have/had a situation where you did your IV feeling worse (or no change) for months before a sign that it was doing something that made you feel BETTER??
How did you convince yourself you weren't a person with "post Lyme syndrome" with immune system dysregulation causing it all rather than live bugs persisting? It seems my docs embrace both ideas (seems reasonable) which does allow giving up after no evidence of success.
Posted by faithful777 (Member # 22872) on :
You feel worse before you feel better and I started improving at 3 months on IV.
Only the IDSA doctors believe in post lyme syndrome. You should be seeing an ILADS doctor.
Posted by Razzle (Member # 30398) on :
I was on IV abx for a couple of years without lasting benefits, until I found and got rid of MOLD in my house.
But only 3 months is pretty small amount of time to expect major changes...
And any MD who believes in post-lyme syndrome is NOT an LLMD and I would NOT waste my time and money consulting such MD's. See an LLMD instead.
Posted by tdtid (Member # 10276) on :
Marshall, I was on orals for almost two years before my first LLMD felt I needed a more aggressive LLMD to get me over the hurdle I just couldn't get past with orals.
I had the port put in and did IV's daily and in some cases, had a drip running 9 hours in a day. I can say I DEFINITELY was getting worse before better.
Yes, I had been through herxing even on orals and was very aware of it, but in the beginning, I was starting to wonder if I was just getting sicker with no help in sight.
So I can most certainly relate to what you are feeling and going through.
I think what kept me going was that I had a great support system, both in a local support group, but also here. Others would share their story and let me know that this WILL take time but that they had gotten better by doing this.
I think inside me, I NEEDED to believe I wasn't going to be so ill for the rest of my life, so I WANTED to believe them enough that I kept at it.
Although no two people will be the same when fighting this, I ended up doing 16 months of IV. And yes, my insurance at that time PAID to have the port put in, BUT they refused to pay for any of the IV meds. What was wrong with this picture?
So sadly, we paid out of pocket and that year, we were able to write off $22,000 on our taxes for medical that wasn't covered by insurance.
We fought and fought and fought with insurance and they kept refusing, but the thing that happened was that my LLMD changed the meds to focus on Bartonella. (very common to keep switching meds anyway.)
BUT once the insurance saw I was treating Baronella instead of Lyme, they started covering the med. Obviously from that point on, my LLMD was only treating Bartonella for insurance purposes from that point on no matter what the meds.
I honestly can't remember how many months I went with feeling worse before I started to have any reversal in even the smallest of symptoms, but it did happen at little bits at a time.
With positive changes, it would give me the encouragement to keep going...but it took MANY MANY months to even feel that this was FOR SURE the right move.
I can look back now though and know that for me, it was the only way to recovery since my health had spiraled so far out of control.
Please keep us posted on how you are doing. It's a tough battle, but so worth it once you start being able to live life again in the way you use to.
Posted by marshall62 (Member # 23538) on :
Thanks so much for your replies. I hate the thought that I'm going to be one of the rare people who do not get better from this disease.
Before the arthritis symptoms came on I was running 6-10 miles and cut and split a couple chords of firewood every year.
I lost running pretty quickly due to knee and back arthritis that set in. Then walking became painful to the back and I've had to keep those relatively short (no more than 4 miles but usually about 2). I took up swimming and was able to do that for a few years. This winter I tried to wean off Klonopin and went through a withdrawal that kicked off a nasty flare of nerves and inflammation. Nearly lost my job as a programmer due to the nerve and tendonitis in hands/wrists. Now I'm limping along at work barely able to put in 6 hours on the computer, I lost swimming because of radial nerve injury and IV in arm and all symptoms are worse after this month on IV.
I wish I hadn't screwed around with the Klonopin. I had no idea of the problems that it can cause when you go off. So between that and the IV it just feels like a precipitous drop.
I've gotten so used to living with these symptoms that they just seem like life as usual. At times I say "If things would just stay like this, I guess I could live with it." But then something gets worse and it seems like this disease is slowly progressing and I have to stop it. So 3 months of Mepron and now the IV. Well I'm grateful that most of this stuff has been covered by insurance so far but soon that may end.
I hate having this clock over my head saying I've got 3 months of IV to get better. I guess I'm going to have to cut loose with some money for several months but the question will be: how long do you do this for with no sign that its working?
Posted by tdtid (Member # 10276) on :
Having the clock ticking over your head is never a good feeling. I honestly don't believe I was noticing a difference after 3 months of IV. Well, only that I was getting worse (as in herxing).
I think we have to keep pushing through since you reach a point that you know you can't NOT treat.
I wish I could tell you that it is a short process, but sadly, most of us here have had to treat very long term but if you focus on getting through each day one day at a time, it helps.
Hang in there and know that you will find you are stronger than you realized.
Posted by faithful777 (Member # 22872) on :
Everyone is going to respond differently. Each of us have different coinfections and as someone mentioned mold can also be an issue.
I do know that sometimes we feel so awful all the time that we might miss that one hour we don't feel quite so bad. Getting better isn't always an obvious thing immediately.
Slow and steady is what we all hope for.
Posted by ktkdommer (Member # 29020) on :
My son did IV for 9 months. He had slow improvements each month. Then at month three there were noticeable changes. He kept getting better and better. Major nausea disappeared, frozen stomach was gone, sore throats gone, and all stomach pain ended. Also to clear up were bi-polar like stuff and joint and muscle pain.
Wish he had stayed on it longer.
Hopefully you will see a change soon!
Posted by trimom (Member # 25843) on :
I found IV Rocephin for 5 months followed by IV Clindy has very much helped my joint issues.
I went from doing Ironman tris to struggling to walk or go up stairs at times due to arthritis type joint issues from Lyme and other TBD.
If your insurance stops covering it and if your LLMD is okay with it, you can find cheaper ways to do IV drugs. Rocephin I could do for $225 a month shopping around for best prices and doing IV push.
I did find that pharmacys would not give me prices without having a script. If you want to look into self pay, don't get jammed up for time and have to continue on with a home infusion program for huge money out of pocket.
Posted by Robin123 (Member # 9197) on :
I've heard from several people that it took months, like 10 in one case, for IV rocephin to turn around the infection.
No such think as post-Lyme, just Lyme. A Lyme-treating doctor knows that; the others don't.