posted
It's been a while since I've posted, because as of August of last yr, I began feeling better with Ceftin + Zithro + Malarone combo.
Have been on that for a yr.
Jan, Feb and march were awesome months. I began 150 mgs once daily of Tindimax in Jan, moved up slowly, no herx that I noticed. Was basically symptom free.
April 4-8th, increased Tindimax to 250gs.
April 11-18th, lowered dose to between 1/4 of a 250 mg pill to 1/2 this week.
That same week- 11th - I noticed a dramatic increase in swelling all over and vision issues and then on the 18th, which was when I had been on the lower dose that week, ALL of my symptoms began coming back that had gone away for a looooong time. -- Was it because I lowered the dose? Or, because of the increase the week before and it took time?
Let me put this in perspective, March, I was talking about going back to school, writing my Professor, and talking about having kids, thinking I was almost in remission. My Doc thought I was a "success case".
Now, within a week or two of inreasing Tindimax, and lowering the dose, I not have every single symptom back.
So, please explain to me how a cystbuster works. Does the spiro excape the cyst, making one sick again, while the other antibiotics work to kill?
Or, does the Tidimax kill the cyst itself?
My Doc suspects it might be a relapse, but Im not sure he understands everything as I called and didnt go in to see him. When I go in this wk I will explain everyhting in detail.
But, for now, since Im freaking out, if it's a relapse, why would that happen while I am still on the antibiotics that were working SO WELL just recently?
I also don't want to do the "herx" thing mentally , where i believe it's a herx, and deal with torture, thinking it will be temporary and then finding out those weeks were wasted because it wasn't a herx.
I would absolutely LOVE to think its a herx or a die off of the cystbuster, as many have explained getting worse with the drug. If it's a herx, I can TOTALLY deal mentally. But, my fear is, what if this is a relapse- what the heck does that mean for me. Here i thought I was recovering....
Thanks everyone, and I hope everyone has been doing well this past yr. Posts: 319 | From nj | Registered: Jul 2008
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
As I understand it-a cyst buster breaks open the cyst, killing the lyme and releasing toxin-thus- a herx. But if you don't get the cysts, they can re-activate in the future.
No telling how long it will last...depends on how many cysts you have!
My first weekend on tini was horrible-I pulse on weekends..little better now.
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
Ok, so the cyst breaks open, the cyst buster kills it and it releases a toxin. Okay. So that causes a herx.
My symptoms are the same exact ones I had when first ill. I never did understand how one could tell the difference between symptoms and a herx.
Some say herxes are flu-like and others say one can get actual symptoms. I never know what to believe. I don't have flu-like ones, so it's a bit discouraging.
Also, would it take that long to begin the herx?
I was on 150mgs for 2 mths with no problems.
Then, I increase it, double it, for a week, go down for a week and that same week, I begin the swelling, which then follows with symptoms- raging ones within a week time.
Posts: 319 | From nj | Registered: Jul 2008
| IP: Logged |
posted
So the question is, how long after beginning the cystbuster does one typically get the herx?
And, how does one know whether its a relapse or herx?
Posts: 319 | From nj | Registered: Jul 2008
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
It could be the doubling it caused the herx-you may just have a few "deep cysts" which the stronger dose went after.
My herx's are an intensification of my symptoms.
Why don't you ask your LLMD what he thinks.
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I think in Dr B's talk-he said you had to have a spike in the dose for 2 weeks?
Sounds like that could be it.
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
The cyst buster opens them up and then it is the antibiotics that kills the spirochetes. As I understand it anyway. I'm now wondering what my tindamax dosage is because I want the cysts gone now. I don't herx anymore on my dosage but did at first.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
The cyst buster opens them up and then it is the antibiotics that kills the spirochetes. As I understand it anyway. I'm now wondering what my tindamax dosage is because I want the cysts gone now. I don't herx anymore on my dosage but did at first.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
posted
Honestly, it would make sense to me that the cysts opened that first week, then causing the autoimmune swelling the 2nd week along with fatique and then the 3rd all out major symptoms from the die off.
It's been one full week with major symptoms, not to mention that this week, I went back up to the full dose.
Or, it would also make sense that for some reason, the antibiotic stopped working, causing a relapse and that itis a coincidence.
Well, tomorrow I see my Doc. Hopefully we figure this out. I suppose the best thing to do it to do something that covers both situations. Hopefully, they don't contradict.
How soon after beginning the cyst buster did you guys get symptoms?
Posts: 319 | From nj | Registered: Jul 2008
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I herxed--got lots of pretty bad symptoms--by about the 3rd day on flagyl.
I took 250 mg three times per day from the very first day. No ramping up.
Posts: 9931 | From Maryland | Registered: Dec 2007
| 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)
Printer-friendly view of this topic