treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I stopped better than a month ago Iam off everything except probiotics.
Wife had a terrible reaction but we dont know if it was peanuts cashews or the ketek? She got red bumps all over her and some areas itched then they started to go away replaced by swelling lips hard breathing then a trip to e room and they gave her ativan or something like that relaxed her and shes fine??
She gets awfully excited when something isnt just right. Shes off ketek immediatly just in case and I finished out the month and went off everything feel pretty good still waiting for that deep dull ache to return hope Iam over this. Have appt in june llmd I might go on something just to see if I herx.
Hopefully ketek wacked hopefully
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I called my LLMD this morning to tell her I have stopped Ketek for both my 15-year-old daughter and myself, and to ask her to prescribe something else.
I realize this may be an overreaction, but it would be hard to forgive myself if something happened to one of us after knowing that the safety studies used by the FDA to approve Ketek were fraudulent. I realize the fraud that was committed may not have any bearing on whether Ketek is safe; however, based on what was in the WSJ article, it sounds as though there weren't any credible safety studies done on Ketek for all intents and purposes. And that is scary.
We're both been on Ketek for over 4 months. Hopefully, we have received some benefit (nothing dramatic, but we've both been gradually improving) and our doctor will agree it also makes sense clinically to try a different drug.
We're both on other drugs as well. My daughter's on Omnicef, Plaquenil, Malarone, Artemisinim (an herb, I know), and pulsing Flagyl twice a month. I'm also on Minocycline, Mepron, and Art.
Anyone else feeling uneasy about Ketek? Any thoughts on what the next best drug might be given what we're currently taking?
Posts: 164 | From USA | Registered: Jul 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I've been on Ketek for four weeks today. During the first week I was fine for a couple of days and then overcome by extreme fatigue. I spent several days sleeping most of the time. My cognitive problems were at an all time low.
Since then I have been doing OK. For the past ten days or so I have had more energy than I've had in years, although that is a relative term!
My doc is monitoring my liver and I trust him. I've been seeing him for four years and he just recently got on the Lyme bandwagon, but when he gets on something he is knowledgeable and ready to go with it!
He's also not afraid to consult with someone who has more knowledge when necessary. Gotta love him!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
I have been on Ketek for 3 weeks total (14 days Ketek and 14 days Tini, then another round of Ketek/Tini and I am into 7 days on Ketek).
Today, just got my blood tests back and everything is normal.
The tests including blood cell counts and liver kidney function tests.
While I on Ketek, most of the time I didn't feel good.
But seems overall it's improving.
I also tried 400mg a day to reduce Ketek's side effects.
But so far, it's hard to say if it's as effective as 800mg.
I may keep trying and see if my symptoms is improving.
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
I have been on Ketek (400/ day for 2 weeks then 800/ day) since December.
I had immediate relief of arthritis symptoms and those symptoms have not returned it is the first time in 5 years that I have had full use of my hands upon waking and haven't had trouble walking
When I first started the Ketek my neuropathy symptoms increased dramatically. The burning pain and the tingling, numbness, and pins and neddle senesations really were going crazy. I was worried but my LLMD said this was due to die off.
He also said we wouldn't get much further in treatment until we started on Babs treatment.
When I started Mepron I noticed a decrease in the intensity and duration of the neuropathy increase cycles (if that makes sense).
My bloodwork has been good. It is being monitored by my local MD who would be more than happy to tell me I am killing myself with this treatment he doesn't believe I have Lyme) so I know that the numbers must really be good.
I don't drink. I detox. I don't eat any sugar, I eat healthy and have for years prior to treatment.
So far so good
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
I was on ketex for 7 months before my liver numbers went up. I also took omnicef, always, and diflucan, sometimes.
And, I was also monitered, which is why we could see the numbers slowly creeping up until they got too high. I stopped all prescriptions, and the numbers are fine again, so probably no long term harm done.
This is the first abx to make my liver numbers go up. I have been in treatment for 2 1/2 years and have taken lots of different types and combos of ABX and flagyl etc.... I dont drink, dont eat sugar or fruit etc... I am on a pretty strict vegan anticandida diet.
I also think that I did well symptom wise on ketex, but even my two week on two week off scheduale of it turned out to be too much for my system for a long haul--I started on it last august.
I am not saying not to take it. But, we should report back how we do on it, and it did effect my liver.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Mountainmomma,
Why didn't the doctor stop the meds right at the point when the number went up in stead of watching them go up and up?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Because they were under the limit (they were in the normal range) of what is considered high. My usual liver numbers are normally at the very low end of the normal range. So, she knew they were getting higher for me, but they were not in a high enough area to take me off meds. We just kept monitering. When they got too high, just barely above the normal limit, we stopped all meds. They then got higher, cause it takes awhile for meds to cause an effect or clear our systems I guess. And now they are back to very low--my usual again.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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and those symptoms have not returned 
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