Thanks!

------------------
Lyme Disease Help
http://www.wildcondor.com
 

Man, I'm so happy you posted this. For the last week, I've been lurking on this site trying to find info on ketek, but it's so new that everybody is in the same boat.
I just started on ketek a week and a half ago. I've had Lyme for four years, and have become desensitized to most abx. The only one that seemed to make a real dent anymore was minocycline, although I was holding the Lyme back about 50% with a combination of omnicef, plaquenil, zith and flagyl. Even this powerful cocktail was obviously unable to get me beyond a certain point.

Two or three weeks ago, I went back on low doses of mino, hoping to avoid a herx by spacing out doses. Then I went on ketek and all the floodgates broke loose! On Day 2, I abruptly developed this massive cold, with hacking cough, chest pain, sneezing, endless sinus draining (sorry to be graphic), lowgrade fever, sore throat. Blech. The only good part was I finally could sleep for seven hours straight.

These symptoms consistently get worse two hours after each ketek dose, so I'm convinced that's the cause, and it's not a coincidence. If the ketek is working, it also seems to hit the Lyme at a particular phase in its life cycle, not right at the beginning of a relapse, but after the relapse has revved up a bit. So it's been relapse-herx, relapse-herx, with almost no let up in cold symptoms.

In fact, the relapses have been stronger than usual, and I'm harboring the bloodthirsty hope that this is because the spirochetes know their days are numbered, and are attempting some sort of Lyme Alamo.

 

Scott
 

------------------
Lyme Disease Help
http://www.wildcondor.com
 

Just wondering what you had tried before MP, and what your general situation was before starting it.

~Torch101

 

Any ideas on Ketek and where to get it cheaper..or any programs?

------------------
Lyme Disease Help
http://www.wildcondor.com
 

What about the Ketek?

Lets hopefully hear more on here.

Nice Thread WC!!!!!!!!

Trout

PS..I understand semper fi's suggestion tho

 

I have been on Ketek and mepron for a month. Prior to that mepron/zith, doxy, ceftin/biaxin, tetracycline. I have been in treatment since February 2004.

The Ketek has made a HUGE improvement in my cognitive symptoms. Double vision has gotten worse and joint paint and muscle pain has returned but I am so happy to have my brain back. Depression/anxiety is gone too! Neuro stuff has been up and down (numbness, pain, etc) and fatigue has increased.

Overall I am very happy so far.

It is covered by my insurance but it is a top tier drug so I pay $25.
 

We are encouraged by her "possible" improvement in neuro symptoms (ability to think) and fatigue since beginning Ketek. So far, she is managing 9th grade and one extracurricular and managed to work thru a decent "herx" like event at about 3 1/2 weeks. She is a stubborn child who prefers to not be home bound school and WILL NOT use her wheelchair or walker!!! She wants to be "normal"!

I was concerned about the onset of coughing episodes and a runny/stuffy nose combo which seems related to the med. It didn't really make her feel any worse and she ran no fever w/ it!! Started a couple of days before what I feel was the herx and the coughing continued for about 5 days.

I emailed Aventis (drug mfg) today and they called me back quickly!! Since we are using it "off label" there isn't any documentation as far as results etc. He couldn't say whether the coughing was "definitely" related as it wasn't one of the side effects which has been widely reported. He indicated they would refer my email to the "adverse eveents" department and encouraged others who have experienced similar episodes to do the same as it will give the company an idea what types of things are happening in current use.

I also asked about her pupil dialation and he indicated this could be related and to watch for problems w/ blurriness etc. If she experienced them, I am to notify Dr. J.

So, I am hopeful the coughing resolves. It went away for about 5 days and then yesterday, she started it again. She just got home from school though and I'm not noticing it now!!!

As for cost, so far, it is being covered on our prescription plan at the highest tier. I noticed on the website, there was an area you could go to regarding "financial". Perhaps they offer assistance.

I don't remember the web address as I accessed it thur Yahoo search but, the number to "Aventis Medical Services" is
1-800-633-1610.

I think we'll stay w/ this one for awhile!! Good luck to us all!!

Sherry R and Katie

Found the website address: www.aventis-us.com

oops me again!
my computer is working better than normal today - here is patient assistance info from the website:

For all other (US) Aventis Pharmaceuticals Rx products, if you are inquiring about prescription drug assistance or patient Rx discounts, please contact the Aventis Pharmaceuticals US Patient Assistance Center at 1-800-221-4025.

Visit www.Helpingpatients.org to find out about US Patient Assistance in obtaining prescription drugs made by other companies.

------------------

[This message has been edited by ponytail (edited 23 September 2004).]

[This message has been edited by ponytail (edited 23 September 2004).]
 

It costs me $367.50 for 60 pills or $6.13/pill.
 

Several on Ketek have reported nasal problems and coughs. I have had some slight postnasal drip and some hacking associated with that. But it has been so minor for me compared to other symptoms that I've never mentioned it before. (Or at least I don't think I did!

I too have bleary eyes on Ketek, but my floaters are not as bad as they were when I started it. One interesting new development is that stinky sweat I wrote of earlier returned last night. It's been 4 weeks since that happened to me on Ketek. And this comes after being in bed all day two days ago. I'm beginning to believe in the 4 wk. cycle thing for Borrelia. Before Ketek I never had what I would consider to be a herx. reaction. For me I seemed to have relapses about 6 weeks after upping my antibiotics and getting rid of the neurosymptoms.

Here is a recent post of mine on an off-beat topic, part of which might be of interest to Ketek users.

>>>>My delay in checking in again is due to my extreme fatigue while taking Ketek. I was in bed 13 hours yesterday (Tues.).

That is some kind of record. Usually more than 7.5 hrs in bed I will be very stiff and sore. Not this time. Although the Ketek brought back many arthritic pains, some that I had not had since last Sept., overall I believe I am better arthritically.

But the insomnia problem is something else. I have taken a sleep aid every
night for 2 wks. at least. That didn't even work last night after sleeping all
day. I even sat around sleeping for hrs. after getting up.

And I was sleepy when I went to bed. Just didn't get much.

Today is my longest and hardest day. Have to stand for 6 hrs. or more,
teaching 5 hrs. But I have always done this, even for 8 yrs. with Lyme.

It's just much worse since I've been on Ketek for 5 weeks. I'm trying to finish the second month, but don't know if I can make it.

I just feel so "rotten" inside along with the fatigue. And my brain is as bad as it has ever been. Short term memory is really shot.

I caught myself in writing an email to my son a little while ago, saying
something, and then two short paragraphs later I'm saying the same thing
again. I had forgotten in an instance what I had just written.

I'm also concerned about my TSH numbers going up, doubling actually, within 2.5 months, and 3 wks. after starting Ketek. I really hope that's going to adjust when I stop this antibiotic. I had not been bothered with this when on Ceftin, Doxy, and Biaxin for one yr.

I know that is where a lot of my fatigue could also be coming from.

****In order to find out a lot more about my and others experience with Ketek, check out this thread: http://flash.lymenet.org/ubb/Forum1/HTML/026351.html
You can get the details of my increase in TSH (thyroid stimulating hormone) after being on Ketek on that thread as well. Did LD trigger the change or the antibiotic, or what?

I was glad to see the post about notifying the drug company on our reactions to taking Ketek. I am concerned about long term usage, wondering what damage it might eventually cause, if any.

I know that some Canadian Lymies who have been taking Ketek longer still like it, and they have said things really got better after 7 weeks! I'm trying to hold on that long. I hope they will periodically update us on how it is going, please.

-Caveman
 

I will look up that info and now I have hope that I can get some!...whew!

I just want to add something my LLMD told me that helps the neurological symptoms.
The recommendation is a combination of the supplements SAM-e 400 mg once a day without food plus 1500 mg N-acetyl carnitine once per day taken together. This is supposed to help thinking, memory and brain fog.
I just started it today and I'll let you know how it goes...supposed to take 3 weeks to reach its full potential.

Thanks again for all the help!

 

I'm new here and would like to learn as much as possible about lyme in young children.

Thanks,
k

 

As I was reading the posts here, I had the same question you do! Have an 11 year old
grandson and if it is safe I'd really like him to try it!

My lyme doctor is thinking of trying me on it next month. The price has made me think twice about it, though!

I have been on omnicef and biaxin and plaq. and am very happy with the results. Maybe I shouldn't switch when things are going well! How is your son doing on it?

People here are great at answering questions...I think it's especially hard on young children. There is a yahoo group you might want to check out, too! www.yahoo.com
Click on GROUPS, and type in Lyme disease...
the name of the group is Parents of Kids with Lyme.

Hope to see you posting again soon.
Give that little guy an extra hug...

 

First, for the people with questions about giving ketek to kids--although ketek is the best abx I've ever been on so far, I can't handle it at the 800mg/dose/day. Although I'm an adult, I'm 4'11. Usually, I'm a tank and can handle high doses of nearly anything, but ketek packs a wallop, and you might want to start a shorter person on a lower dose. Luckily, I've gotten great results by spacing out the 800mg over a 24-hour period, or even taking 400mg/day.

I've been on ketek two weeks, along with very low doses of minocycline and omnicef. After a seemingly endless herx that expressed itself through severe cold symptoms, I started feeling better a couple of days ago.

Today, I was at school, where I've managed to get by for a year despite the typical Lyme fatigue, fever, etc. I decided that I would get some reading done, and barely noticed that I'd read for almost five hours (with a few little chocolate breaks, I'll admit) before getting tired.

Why the heck am I getting tired, I thought--forgetting that usually I'm lucky to manage an hour of sustained effort--I probably just need to stretch my legs. So I went out and walked for two miles, then felt a little tired again and jumped on the train home. Then I walked a little more, because I still had some extra energy. That's seven hours of almost continuous work, after being in bed with a relapse for over a month.

And I'm still not tired, so I'm going to read some more! Here's hoping this lasts...
 

You answered a ?? I had. I start tomorrow on one 400 mg tablet per day. I was wondering about that cuz instructions and everyone say 800 mgs per day.

Im 5' 4' and just barely over 100# so that might be why the smaller dose. Im just as happy to start out slow anyway. I will let you all know if I have anything to report along the way.