posted
I was on rocephin for a month, Blue Cross refused to pay for more. It took only a few days of no IV before I started being so nervous I thought I needed a padded cell. The doc says the Lyme is in my nervous system.
I am now on bicillin LA. Blue Cross won't pay for that either, as it's an injectible. I've had one shot, the second one is due tomorrow. I had hopes for this, but I am more nervous than ever. And I mean crazy nervous.
I am on Klonopin for that, at 3 mg/day, and it is doing nothing--maybe taking the edge off slightly, but that's all.
I see my LLMD Friday. Does anyone have any suggestions about medications I can discuss with him, regimens with which you have had success? Anything at all? I am about to jump out of my skin.
He is open to my concerns and suggestions. I can't search anymore at this site, because I lose concentration and just get more nervous, and if I get any more nervous I'll explode. Any help will be much appreciated. Thanks.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
VANTIN IS THE ORAL EQUIVALENT OF ROCEPHIN AND WIDELY USED. it is even generic now. id doc have used this for years.
more history would help. you may need levaquin or plaquenil also.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Anxiety was one of my lyme symptoms; my llmd has prescribed 7g/day amoxy. I had alot of relief with first, 400mg/day doxy, and then amoxy.
Of course, we are not doctors -- dosage depends on your history and weight, consideration of all your symptoms and health status. That is what your llmd should consider!
Good luck and let us know how you are doing.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
posted
Here's my attempt to post more history. My brain is barely functioning, so please bear with me.
I was first diagnosed with Lyme via a LUAT in 2000. The numbers were extremely high. I was treated with oral Ceftin and Minocycline for a year. They did nothing to ease the symptoms that led me there in the first place--chronic fatigue and a weak immune system. I'd had those problems since January, 1984, a couple of years after moving to the Maryland woods. So the treatment did nothing and doc assured me I was cured!
The usual M.D. offering before that was "it's just a virus, take two Tylenol and call me if you don't feel better." Or, even better, "here's a prescription for Prozac and a referral to a psychiatrist." So from 1984 to 2000 I just lived with the fatigue.
I'd have just kept on living with it. Unfortunately, I began to develop severe back pain in 2006, and after myriad treatments the orthopedist recommended an epidural steroid injection. Big mistake. The nightmare began and has only gotten worse.
I developed an EM rash on my leg and it spread, becoming five rashes. Then it spread to the other leg. And this was while I was on rocephin. The LLMD reasoned that a year on Ceftin may have made me at least partially resistant to rocephin, since they're both cephalosporins. He thought it was helping me hold my own, and that I needed another 30 days. Blue Cross said no, 30 days of IV treatment is enough to cure Lyme. Right.
But at least while I was on the rocephin I wasn't having a nervous breakdown. The PICC line has been removed.
I'm okay with the weekly bicillin shots, even though it's costing us a $1000. Well, not okay, but anyway. But it doesn't seem like enough. It feels like the Lyme is taking over my nervous system and I need to blast this stuff with an atom bomb.
When I was on IV rocephin, I was having nervousness but that was nothing compared to this. The doc had me on one mg of Klonopin a day then. Now I'm on 3 mg/day and I might as well be sucking on candy canes for all the good it does.
Sorry about the length of the post. Hope it's legible.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
This is just my opinion as a lyme patient.
Have you ever been tested for coinfections
and if you were and they came out neg
do any of your symptoms seem to indicate one.
No progress in a year ... may mean it just wasnt the right combo for you...
it could also mean coinfections are present.
If you have coinfections their presence would dictate the choices of abx that would help.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Peggy,
Just wanted to add -- in addition to the abx, which have been important for me -- I also added several herbs and nutritional supplements that I believe help with the nervous system aspect of lyme. They include:
The Buhner protocol herbs: Resveratrol (polygonum); Andrographis ; and Cat's Claw. All of these have helped. When you can do it, get his book "Healing Lyme"
A general B vitamin; B-50 B-12: Methyl - co. Niacin (the flush kind) Omega 3's (fish oil) Freeze-dried garlic Colostrum (NOW brand) Lecithin Host Defense (mushrooms)
Quit all alcohol, and sugar and baked goods. Eat more fresh vegetables and some fruits
For me, the abx are the most important thing -- but the supplements I am sure have helped.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
posted
Thanks to all who replied. To answer your questions, I was tested for coinfections in the past month and tested negative.
I am on every supplement known to mankind. Since I've been dealing with chronic fatigue and immune system problems for so long, I have been meticulous about my diet--no alcohol, no sugar, no refined grains, etc. Lots of vegetables, fruits (except right now--because of yeast), and whole grains (except now--yeast). Everything organic.
The treatment I went through for a year was 6 years ago. This current infection is either new or the Lyme was in hiding and reared its ugly head when I had the steroid injection, which is what the LLMD believes.
I also have the Buhner book and have read it at least 3 times, and I have all the herbs on the core protocol. I tried Andrographis and thought I was going to have a nervous breakdown for sure. Maybe it's just too strong for me, or maybe it was die-off, but I just couldn't stand being that nervous. I thought I was losing my mind. So I haven't tried again.
I think the infection is so severe it's going to take being bombed into oblivion with the right abx combo. And something to calm my nerves. Like maybe being hit over the head with a mallet.
I will print out any ideas and successes and take them with me to my doc appointment Friday. Thanks again to all.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Peggy..
From what it appears.. you have been on the IV.. then shots.. and that was for about 5-6 weeks now?
If so and I am reading this right... and IF your anxiety has significantly increased.. could it be you are herxing?
The timing sounds right.. so I just wonder. When I use to herx.. I felt like you did.. ready to explode with anxiety. NOT a good feeling!!!
Also.. the Rocephin tends to stay a while in the system.. longer than you would expect. It also can be the "good days" from it will take a while to be noticed.
posted
Peggy, Tincup has a really good point. You do sound like your herxing. AFter reading Tincups posting I remember how anxious I was for a couple of months after I first started treatment. I've sent you a PM. If it makes you feel any better please know that you aren't alone. I think most here can relate to your anxiety.
Posts: 547 | From Maryland | Registered: Mar 2005
| IP: Logged |
posted
Here's why I'm concerned I'm not herxing--I have a new EM rash. The 5 rashes I started with are fading, but there's a new one. That sounds like Lyme getting worse, instead of herxing, am I right?
My anxiety was uncomfortable while on rocephin but one Klonopin a day took the edge off. But I've been off rocephin for nearly 3 weeks, and have had one bicillin LA shot a week ago, and the anxiety is through the roof. My intake of Klonopin has tripled, with little noticeable effect.
Last week I asked my LLMD for something stronger than Klonopin, and he prescribed Celexa. That made matters much worse--I couldn't even sleep. So that's down the drain. This is a nightmare.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
posted
I went on Claforan IV for five weeks. We had planned for six months but I suddenly had a allergic reaction. Two different types of rashes and some swelling. Went off the Claforan and started the Rocephin only to have another immediate reaction to the Roecephin. It took me a couple of months to recover.
In the PM you sent your bicillin is double the strength that I am taking.
Did you take orals before you started the IV and bicillin? When we say we think you are herxing its because once treatment is started we all normally felt a lot lot worse for awhile. For me I felt like total crap for about 2 to 3 months after treatment started. I have gone through times when I have felt overly anxious most especially in the beginning. Its a hard disease to have to deal with.
Posts: 547 | From Maryland | Registered: Mar 2005
| IP: Logged |
posted
Yes, I had a month of doxy before I ditched the non-LLMD and switched docs. He took one ook at my rash-covered legs and ordered rocephin but Blue Cross dragged their feet about approving it so I stayed on doxy for another month. Six years ago I was on Ceftin and Minocycline for a year, no flareups after that, till now.
This is my first experience with anxiety. Oh, and Blue Cross won't approve the bicillin because they don't cover any injectibles, regardless of the strength. I'm supposed to be cured. Hah.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
On my way out today.. but just want you to know.. herxing can bring out Lyme rashes. Has happened to me and others a number of times.
Sometimes BIG nasty ones too! I suppose the keets in the skin get annoyed and become active.. and they hit the area where they are visable?? That is a guess. But Lyme rashes are not unusual during herxing.
posted
Peggy I am sooo sorry you are suffering . My suggestion may not be right for you , but I strongly suggest you try antidepressant that targets anxiety . I would be in BAD shape ( VERY BAD) if I did not take prozac or zoloft ( which are BOTH generic now).
Unfortunately the benzo anxiety drugs wear off in effectiveness over time , then cause more problems .
I also take Carlson's lemon flavored fish oil in a glass of juice which makes the AD's work EVEN BETTER for me .
I can not emphasize enough how much Ad's can help with our ability to maintain perspective and simply enjoy life, even when our circumstances are trying.
posted
Thanks so much to all who have replied. I will take your suggestions to my appointment tomorrow. Nobody knows like those who are going through it.
It's also good to know that new EM rashes can be a sign of herxing--I was convinced it was Lyme still taking over, especially with the increased "anxiety." I put it in quotes because it feels more like an atom bomb going off inside, not like anything I've ever thought of as "anxiety." Maybe "insanity." (I still have a sense of humor, how about that?)
Any more suggestions about drugs or alternatives that help with "anxiety" will be more than appreciated. I'm on Carlson's fish oil, acetyl-l-carnitine, gingko, and just started GABA today. But after my first experience with andrographis, am petrified of trying Buhner's herbs again, though I have them all.
And so it goes.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
posted
Peggy- Sorry to hear you feel so terrible. I was feeling extremely anxious at the start also. STILL getting periodic rashes-glad you brought it up & so very glad to hear it is possibly a herx, not worsening of LD!!!
My original rash was not a true bullseye-but I sure did see a classic one on my back 6 months later! Think I have had some sort of rash/bruise-type mark at least once a month-
You can search for a recent post about tiny bullseyes..would link you to it but not sure how! Hope you are feeling better- Sue
Posts: 240 | From finger lakes, ny | Registered: Jul 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
![[Frown]](frown.gif)
Think I have had some sort of rash/bruise-type mark at least once a month-
Printer-friendly view of this topic