kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I HAVE BEEN TAKING KETEK SINCE OCT. I FEEL IT IS HELPING. MY LLMD IS ALSO HAVING ME GET BLOOD WORK EVERY TWO WEEKS TO MAKE SURE IT IS NOT AFFECTING MY LIVER.
MY LLMD HAS BEEN SENDING ME SAMPLES OF KETEK TO TAKE.
INSURANCE DENIED MY FIRST REQUEST FOR KETEK. THEY THEN DENIED THE APPEAL.
I RECEIVED THE PACKET RESULTING FROM A FAX I SENT REQUESTING A HEARING AS SUGGESTED BY A REP FROM THE INSURANCE COMPANY.
THERE WAS NOT MUCH INFORMATION IN THE PACKET FOR WHOEVER IS MAKING THE DECISION.
I DID NOT SEE MY LLMD'S PAPER WORK. HE FILLED OUT THE APPEALS FORM WHICH EXPLAINED WHY HE WANTED ME ON KETEK AND NOT ON THE OTHER DRUGS THEY WERE SUGGESTING I TAKE.
I GUESS I AM WONDERING IF KETEK IS HELPING YOU TOO.
I ALSO AM WONDERING WHAT TO EXPECT WITH THE HEARING. I WAS TOLD I MIGHT BE ABLE TO HAVE A HEARING OVER THE PHONE INSTEAD OF HAVING TO TRAVEL WHEREVER IT IS I WOULD NEED TO GO.
IT SEEMS LIKE I HAD ANOTHER QUESTION BUT CAN'T RECALL WHAT IT WAS.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Ketek saved my life. Within hours of the first one my brain fog cleared up. Of course, it took much longer for the other symptoms to abate. I took it for 9 months. Then the LLMD switched me to another abx.
I had multiple blood tests for liver enzymes during the course of treatment. The LLMD was aware of the potential for harm.
This whole brouhaha seems misguided. If one has blood tests while taking it to watch for damage, it seems a useful abx in the fight.
posted
I agree....Get your blood work done every 2 weeks-month.
Ketek brought me back to the land of the living. Brain fog, cognitive stuff was NOT THERE. I took it for 4 months and then went on to babs treatment for an additional 4 months.
After that, it is the one drug I still use, plus tini or flagyl, when I take antibiotics.
Sorry "they" are giving it a bad press. It is as if they do not trust physicians to read labels and check bloodwork.
Good luck to you....
Posts: 190 | From BC Canada | Registered: Jul 2004
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I'm sorry to hear they're giving you a hard time about coveraqe for Ketek. I can't offer any insight about the hearing - but I will send lots of positive energy your way, and hope for a favorable outcome.
I took Ketek for quite some time (6 months? 9 months? Can't remember right now) - and felt it helped tremendously.
If it is helping you too, then it is worth fighting for it.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
?
Grapefruit juice can ***inhibit the activity of CYP3A4***,which is important in the metabolism of a number of drugs, including cortisol, omeprazole and erythromycin.
Telithromycin (Ketek) is a substrate and a ***potent inhibitor of the CYP3A4 system***
Keeping cortisol levels up? Anti-inflammatory and antihistamine actions?
Other reasons?
Grapefruit juice, like other citrus juices, is chock-full of Vitamin C and potassium. But that's not all. A cup of fresh, pink grapefruit juice contains:
� 96 calories � 1 gram of protein � 22 grams of carbohydrates � 22 mg of calcium � 30 mg of magnesium � a mere 2 mg of sodium � 400 mg of potassium � 94 mg of Vitamin C � 24 micrograms of folate � 24 micrograms of lutein � 1087 IUs of Vitamin A � a negligible amount of fat and no cholesterol
Fresh white grapefruit juice has less Vitamin A due to it having less beta-carotene; white juice has only 81 IUs of the vitamin.
While not as powerful in this area as oranges and tangerines, grapefruit juice contains a variety of flavonoids and glucosides called *limonoids* that are thought to protect against cancer. Lab tests with rodents showed protection against lung, mouth, breast, prostate, and colon cancers.
Many women are plagued by maddening, uncomfortable yeast infections. For some, drinking a glass of grapefruit juice every day staves off the infections, either by acidifying the woman's system or due to an unknown botanical compound that helps the body fight off fungal infection.
Grapefruit juice is cheaper and less toxic than the antifungal drugs used to treat yeast infections. However, women who want to give the juice a try should watch out for drug interactions.
A more problematic feature of grapefruit juice is that it causes you to absorb more of certain types of drugs, thus potentially causing accidental overdose.
It does this by inhibiting naturally-occuring enzymes in the intestines (specifically, cytochrome P450 isoenzymes) that break down a certain portion of said drugs before they have a chance to enter the person's bloodstream. Drugs that should not be taken with grapefruit juice include:
All the above are prescription medications; there's been no evidence so far that grapefruit juice interacts badly with any over-the-counter medications.
In many instances, the precise effects haven't been worked out, but all the above medications have the potential for some kind of interaction.
The drugs that you should absolutely avoid taking with grapefruit juice are the calcium channel blockers (which can dangerously lower blood pressure), drugs that can depress the central nervous system such as busipirone and benzodiazepines (an overdose of such drugs can cause accidents or put you in a coma), or drugs used to regulate heart rhythm like amiodarone.
(GRAPE juice, not grapefruit...inhibits platelets.)
Pink and Ruby Red grapefruit juice contain lycopene, a carotenoid that has been associated with decreasing the risk of ovarian cancer and other forms of cancer such as prostate cancer.
As an antioxidant, lycopene also has been linked to helping prevent heart disease, the number one killer of women today � o Grapefruit juice naturally contains more than 150 phytonutrients, many of them known as flavonoids, a class of natural antioxidants that many scientists believe may help the body in its battle against aging, allergies, infection, cancer, ulcers and heart disease11.
I have only been taking for one month. (I also have insurance problems) So far, I feel worse. My whole body is aching. It seems my whole back/neck is in spasm. Has anyone else esperience this?
It sounds like it's worth mu continuing for awhile.
Any insight would be appreciated.
Thx!
Posts: 9 | From California | Registered: Jan 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Mary Ann,
I really liked it at first. Then my power chair quit on me. The power chair helps me keep the pain level down and is a good antidepressant..it helps me get outside and feel a little independent.
Somewhere in all of this...
I did not like Ketek. I would wake up in pain..can't recall the rest of the stuff going on.
So, I backed off. No meds and then gradually started adding the meds back. I was on 3 different abx.
I also started taking Ketek at 9am and 3pm.
I really goofed up on taking the Ketek. I took 4 pills at one time.
Then took two at one time.
Then started the one pill at 9 and one at 3.
I had forgotten what my doc said and was too out of it to call and see.
SAturday night lyme chat helped me get back on track.
Gosh. I am lost now.
Bottom line is I had a good week last week. I was able to be on my feet for 5 minutes twice a day.
I would walk the perimeter of the dog park while I was there. I also was functioning well enough I could call Rosie over and give her some commands and a treat.
This week...I am having a rougher time of it.
I am still doing the dog walk. But, I am cutting it short. About 3 minutes perhaps. It takes all I have to focus on making sure I don't loose my footing. The world is about 6 inches from my face again too. I am not able to just walk and look around.
The brain is really struggling and the strength is gone. LIttle power. LIke my power chair when I forget to charge the batteries.
I feel Ketek is helping and would like to continue to take it as long as my blood tests show I am OK>
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Lyme Too,
I too wondered about that. Or if they were taking other meds that may have had a bad affect..effect?
Thanks Dan, Island Girl and CActus..Mathias..I kind of wonder if this is my break through drug too.
Marnie..I will need to read your email when the brain is more rested.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Kam and Maryann, it took me several months on Ketek to see progress. At first, I just felt miserable - the whole world just shrank down to nothing in the face of the pain.
But at some point, I think 3 or 4 months in, I started to have better days, and they started to cluster together some. I was also on Mepron at the time, so it's hard to tell which med helped specifically.
I took a 3 month break soon after feeling better, and went on IV Rocephin, then back to Ketek (and a few other abx) afterward for another 3 or 4 months, if I remember correctly.
Then I switched off Ketek altogether - but I still felt it helped when I was on it (felt better then than I do now!). I would use it again, even with needing to monitor everything so closely because of the risks.
Kam, I hope they approve it for you if you feel it's helping, and you're not having liver issues.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I am finishing up nine months on Ketek. When I run out of pills this weekend I will switch to Levaquin.
I noticed dramatic improvement while on Ketek. One thing that improved was the amount of time I am able to stand.
Before Ketek I couldn't stand long enough to cook. All my meals were microwave meals or something simple like cheese, fruit, soup, etc. Now I can actually cook, and clean up.
I just sold my house. A year ago I would never have been able to get it ready to sell and keep it on the market. I spent too much time in bed every day.
Ketek allowed me to cut back on my daily nap times, some days not even falling asleep. I know I still have a long way to go, but I have improved a lot on Ketek.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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