Topic: Ketek: 10X more effective than IV Rocephin?
Dave6002
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quote:Talk of it being a possible cure and in that website Burrascano said that it may be 10 times more effective than IV Rocephin. Wow, one can only hope.
Dave6002
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Yes, you are right, I found it:
quote:Biaxin is a much better drug. Ketek is by far the best. May be 10x better than IV Rocephin but it is hard on the liver and the heart. People usually have a difficult time and may herx for 1-2 months. It is killing germs that have never been killed before.
___from Dr.Burrascano in Hope to Heal Lyme Reston, VA April 1-2, 2006 Conference Summary and Notes By Scott (www.BetterHealthGuy.com)
Posts: 1078 | From Fairland | Registered: Apr 2006
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Dave6002
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quote: Ketek .... is hard on the liver and the heart.
This is also very true: I had irregular heartbeat and liver pains just after several days on it. However all these symptoms are gone after I stopped.
Posts: 1078 | From Fairland | Registered: Apr 2006
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Mathias
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10x better is unfortunately a subjective measure. There is no actual data on how effective Ketek is against lyme disease. It certainly seems to be a good agent but its far from the cure that we so need.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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Dave6002
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Just hope that based on the structure of Ketek, they will develop a drug that is very effective for Lyme as Artemisinin for malaria.
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
I did not find ketek to be anything out of the ordinary in comparison to others like biaxin and zithromax. Maybe, as usual, this is individual, depends on the patient.
Posts: 8430 | From Not available | Registered: Oct 2000
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I know of one patient who had a severe liver toxicity reaction to Ketek. This very serious situation was nearly life threatening.
This patient sent me an article published in the WSJ that spoke of three other patients in the South who had severe liver toxicity from Ketek use. Two died and the third narrowly survived.
My NY based LLMD is very uncomfortable with Ketek and won't recommend it. On the other hand the two Cali based LLMDs I've seen both will prescribe it.
posted
I came on here tonight looking for this topic specifically. I had been on IV Rocephin for a month until last Monday when I went to my Dr. and he added Ketek 400mg once a day to my already existing Rocephin 200mg IV once a day.
I took both on Tuesday and Wednesday and by Wednesday afternoon my right side (where all my symptoms tend to be) had muscle pain, ached and my fingers were tingly/numb on and off.
By 8pm a horrendous headache set in. I couldn't shake it or treat it. 1000mg of tylenol every 4 hours did NOTHING for the headache. In addition to the headache I had all out shakes from the fact I couldn't get warm.
Nothing I did for over an hour made the shaking in my core (and even my biceps and thighs) stop. My husband was ready to take me to the hospital. Since I had experienced this shaking, to a much lesser extent... (almost like the chills) early on, I wasn't as concerned.
The problems came when I went from the fever at 102, couldn't get warm and unable to stop shaking... to 97 degrees all out sweat, through clothes etc. To add more misery- all of that would make me throw up- and I hadn't really been able to eat since I started the Ketek so, well, throwing up was MORE miserable.
This cycled through three times in 2.5 days. This morning I was tempted to go to the hospital again until I found Vicodin in my cabinet. The headache was so bad I actually took it. (I have GREAT pain tolerance and really try not to take pain meds because I don't want my kidneys taxed but it seemed like it was Vicodin or the ER)
It really helped with the headache... my question-is this common? Are reactions LYME or Ketek? This would be considered a Herx right because they were all my original symptoms??
My Dr. took me off the Ketek just until the Easter weekend passed and then told me to get back on only One pill each day. Hopefully that will wean me onto it. I feel like it is indeed a beneficial medicine for the lyme but it really does knock me out.
THanks for reading. Chelle'
Posts: 64 | From Pittsburgh | Registered: Sep 2005
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Dave6002
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Dave6002
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Most people including me found Ketek is powerfull on keets, unfortunately also very toxic to human body.
When I was on Ketek, I didn't feel comfortable and had mutiple sx, I think, some were from Ketek, some from Hex. Your case could be similar but more severe.
Probably cuz toxicity, my LLMD only proscribed 14 days for me.
Ketek+Rocephin could be very hard.
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
When I consulted with my LLMD last November, she had just been to the Phillie conference that weekend. She said that studies were showing ketek was hugely powerful, moreso than the doxy and flagyl I had been taking. I wish I knew the research papers to which she was referencing. However, the way she described it, I think this study was in vitro and not in vivo -- a big difference.
Four weeks into the ketek I wished I were dead. The herx was intolerable. Eight weeks into it, I developed tremors, shaking chills, involuntary muscle spasms (including my vocal chords) like a Parkison patient.
the LLMD recommended stopping it, and my local doc took me off it altogether because of the liver failure of three people in January, reported through his medline source.
So, for me, I am afraid to go back on it, even though I would love to be able to tolerate, live through, the herx and other neuropsych symptoms it created, if it would bring about eventual healing.
Too bad.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
After going undiagnosed for 18 years, I discussed it with my llmd and decided to bring out the big guns and do ketec and tinidizole-no messing around. Day 4 or 5 were very scary-I wasn't sure I would make it. The head, chest and kidneys felt like they would explode and it felt like an elephant was sitting on my chest. If anyone spoke above a whisper I would start to shake. At it's worst, I couldn't even tolerate a sheet on top of me in bed. This went on for a good 10 days to 2 weeks. I managed to stay on ketec for 4 months but was really ill the whole time. It definitely works but I felt very toxic and found it very hard to tolerate.
Diana
Posts: 202 | From vancouver, canada | Registered: Jun 2005
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Dave6002
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My LLMD is the one who Dr.B mentioned in his guideline.
He just prescribed for 14 days, then switched to Tinidazole for another 14 days. I didn't ask why. Probably it's the side effects.
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
Wow! My LLMD (he is in CA) started me on 400 1/day for 2 weeks and then 400 2/day of Ketek back in December.
My arthritis that I had had for 5 years cleared up in 2 weeks.
My neuropathy pain and tingling went through the roof but now has periods of calm. I am now on Mepron as well.
I have my liver checked locally and so far so good. I have never had any heart problems (knock on wood).
I guess it is such an individual thing.
My LLMD says he has had great response with Ketek and in my personal case was also being sensitive to my having to pay out of pocket and IVs would run me a lot more.
He also said that in some people with neuro symptoms herx worse with IV than with Ketek. He had me start slowly with this to try and minimze that.
Interesting.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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Dave6002
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In their recently published paper, they suggest that once Ketek reach a certain concentration (as low as 0.0006 �g/ml), it works bacterostatically and kills in a time-dependent and concentration independent way,binding tightly to the ribosomes.
In another word, higher concentration of Ketek doesn't do anything better than the threshold level, probably only cause side effects.
At threshold level, Ketek binds tightly to the ribosomes.
The fate of the keete will be doomed due to unable to synthesize proteins.
And the best part, in order to kill this keete, you don't need continuously take Ketek.
The keete will die overtime (7 days) with or without taking more Ketek.
Cuz the binding positions on the ribosomes have been satuated.
Is that marvelous?
Short term and low dose will do the same job as high dose and long term, even better, without damage to the immune system.
The immune system will take their roles using multiple arsenal to destroy the keetes and clear up the dead bodies, so you will have less Hexs.
Sounds too good to be true?
This is speculated from that paper.
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dontlikeliver
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About the patients with liver toxicity due to Ketek. One died (not two, unless another has died since that article), two survived. All three had been using alcohol AND Ketek at the same time, which is a big no-no.
What I find very strange about that whole situation though is that all three people lived in the same local area. How can we also not know if they had a 'bad batch' of Ketek, or counterfeit? Counterfeit drugs (yes, even from teh best pharmacies) can be a problem.
About the Ketek working for days when not on it, that is very interesting. Now I understand why my LLMD has me on Ketek only four days a week, with three days off. He said I would still benefit on my days off (which I didn't quite understand, but I do now)
DLL
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Dave6002
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3 days on/4 days off could be better.
and the dose 800mg/day was initially designed for other bacteria not for Lyme.
Considering that Bb has a low level in the body and the effective in vitro concentration of Ketek is very low (as low as 0.0006 �g/ml), while the peak plasma is 2 �g/ml 1 hour after an 800�g oral dose, that's 2/0.0006=3333X.
So one tablet (400mg) would be enough, that,1666X more than the effective in vitro concentration.
Well, one would argue that that's invitro data, but remember Ketek functions by binding to ribosomes and the number of ribsomes in a in vitro kete and in a in vivo kete would be close, unlikely thousands of fold different.
Then, the big problem left is how to help Ketek reach Bb.
One way is to enhance the blood circulation by heat (Sauna, hot bath, heating pad) or some medicine (like Pseudoginseng--TianQi or SanQi is an excellent one and Farah on this board described it's use for Lyme one her website).
posted
I took 800mg ketek w/mepron for 3 mths. They were effective for me in treating the lyme, the babs ???. My llmd checked my liver enzymes and did an ekg monthly.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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I was on ketek daily for 4 months, with flagyl. I have to tell you, it was the drug that got me out of the brain fog and into the much better place I am now.
It was hard but I was so awful anyway, it didn't make any difference. And I credit it for saving my life. Never any liver or other problems.
Now, 1 year later, I am ready to do IM Penicillin. But I also have a prescription for ketek and tini at the reserve, in case I don't go for the shots (I am so frightened of shots.)
My symptoms are cognitive and neuro which I'm praying will resolve. But I also have a whopping number of lesions (40 lesions!) that I need to try to get rid of. And I feel I need one more kick at the can to do so.
So, I will make a decision, hopefully a correct one, and chose either the ketek or penicillin shots.
My LLMD thinks the shots are a good choice, but he is unsure whether the lesions will ever go away at this point.
Posts: 190 | From BC Canada | Registered: Jul 2004
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I've improved tremendously on a combo of Ketek and IM penicillin since last October. With the PCN, if you do them, be sure to warm the tubex up prior to injection by rolling it in your hands for a while. I've found that reduces the pain to a minimal.
Dave6002,
Do you have a reference for this statement?:
quote: Considering that Bb has a low level in the body
I always imagined just the opposite, so I'd like to read that.
Thanks,
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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AZURE WISH
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Dontlikeliver said
"What I find very strange about that whole situation though is that all three people lived in the same local area.
How can we also not know if they had a 'bad batch' of Ketek, or counterfeit?
Counterfeit drugs (yes, even from teh best pharmacies) can be a problem."
I was wondering about that myself... or maybe they all had the same dr or dr group that was prescribing it in the wrong dose.
Dave6002
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quote: Do you have a reference for this statement?:
quote: Considering that Bb has a low level in the body
I always imagined just the opposite, so I'd like to read that.
Stephen's Healing Lyme mentioned several times: In general, spirochete levels are low during Lyme disease and this also true of Lyme arthritis(p40).
Spirochete number in the CNS are often low...(p47).
Spirochete numbers, ws with other sites in the body, tend to be low, out proportion to the severity of the disease(P51).
If this is true and probably is, we have two important concepts critical to Lyme therapy:
1. The severity of the disease is mainly caused by Bb toxins to the immune system and CNS, not the local damages resulted from Bb infections of local tissue or cells.
>>>>>>1. Remove the toxins would very helpful to reduce the severity of the disease and to strengthen the body's defense system.
2. In treatment of small number of spirochetes, the antibiotic therapy for Lyme is very ineffective due to hard to reach them (deep tissue infection) and to enter their bodies (cysts form), regardless of high dose and long term usage.
If we could drive them out of cycts and deep tissues, we might be able to increase greatly the efficency of the antibiotic therapy...probably by heating, electromagnetic waves, changing body temperature (remember Bb is temperature-sensitive, they can sense the temperature and react accordingly, or by esential oils (Farah mentioned that she seem could chase them from one place to another place), etc....
It's my underatanding that if they are moving, they need to come out of the cysts and the deep tissues and must be in spiroid form.
Really, if we want to win the war, we need to know the basics of our enemies: where they are and how many...
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
IslandGirl, We have the same LLMD and I also was on 4 months of Ketek and Flagyl (maybe more). Then did treatment for Babesia with a plan, after 4 months of that, to continue for 3 more months of K/F.
I improved a lot with the Mepron/Zithromax combo. Tried to take the K/F and felt gross! Immediately. Like it was "poison". Gave it a rest and tried again, same thing.
Now, off treatment for 6 months, I'm really sick again. Made appt. with Dr. H and happy to be able to see him.
I will miss our mutual LLMD... he's an angel.
But back to the points raised, I didn't have anything but regular Herxs (no fun at all) but slow improvement and no horrible side effects.
Be well, StinkBug
Posts: 83 | From Colton, Oregon, USA | Registered: Jan 2004
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Jill E.
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I was right on the verge of needing a liver transplant from either Ketek, or a toxic combination from Ketek and other herbs/supplements I was on - my LLMD and hepatologist will never know for sure. My liver biopsy showed the liver of someone who was already in failure. My hepatologist wanted to put me on steroids (she knows nothing about Lyme) and I said no, that Lyme patients can't go on steroids. So my option was to go off all antibiotics, herbs, vitamins, everything until my liver enzymes returned to normal, which they did five months later, although my Lyme and coinfection symptoms worsened dramatically during that time.
I would never tell anyone not to go on Ketek - just be vigilant with liver enzyme tests - do them very frequently - even every week or two if needed. With me, my liver enyzmes kept skyrocketing for a long time after I went off of Ketek because the liver damage was so severe.
In terms of the patients North Carolina that died or needed a transplant, I believe two of the three did drink while on Ketek and/or were on other medications. I have not had one drop of alcohol ever since being diagnosed with Lyme - I won't even use herbs that have alcohol bases to them, so that was not an issue with me. And I live nowhere near there, so it is unlikely I had the same batch of Ketek than they did.
The other disappointing thing for me is that Ketek has been the only antibiotic that dramatically reduced my Lyme muscle pain, but that has come back since going off of Ketek. I wish I could have stayed on Ketek!
Just be careful with it. Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Dave6002
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Hi, Jill,
How long you have been on Ketek and the dose?
My LLMD also prescribed more Ketek for me and I didn't feel well at the liver position when I was on it previously. I cannot say it's liver pain, cuz liver doesn't have nerve. But the pain probably is liver related, so I am alarmed. Thanks and wish you the best
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AZURE WISH
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Jill E.
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Hi Dave,
I was on the 800 mg. per day regimen of Ketek for seven weeks.
I can relate to your liver pain. For years, before Lyme, I would complain to doctors - even my holistic M.D. at the time about liver pain and they'd say the liver can't cause pain, maybe it was the gallbladder, but scans showed nothing. Then when I had undiagnosed Lyme, I had liver pain. Then when I actually developed serious liver damage during the Ketek and other parts of my regimen, I had major liver pain. The hepatologist told me that of course I could feel liver pain, because there can be inflammation and that causes pain. So at least a doctor finally believed me that I could feel my liver when it hurt!
I know that on some of the Lyme boards that focus on alternative methods, many posters mention that when their livers ache they do liver detoxing and that seems to help reduce the pain. But detoxing makes me feel horribly sick, so who knows what the answer is.
I presume you have your liver enzymes checked on a regular basis.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Jill E.
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Island Girl,
Regarding being concerned about IM penicillin shots, I started them a few weeks ago and they are not nearly as bad as I had heard. Before I started, I asked every Lyme patient I knew who had been on them to get tips on how to minimize discomfort. I've now got a list of tips - I only use a couple of them - and people are starting to ask me to post them. Perhaps I should. But if you send me a private message, I'll be happy to pass along what I learned. The tip that was already posted about warming up the tubex is one that was told to me, too. So far, I haven't had to do it, but perhaps I'll try that next time.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Dave6002
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Thanks Jill for the reply.
That's very important suggestions. I'll check my liver often.
I also thought 800mg per day was too high, considreing do a pulse therapyat lower dose(400mg or less): 3-4 day on Ketek then 4-3 day detoxining and liver support.
Just my thinking.
Wish you recover soon.
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
As usual, reactions to Ketek are like other abx's. I took it for 4 months and felt horrible the whole time. It caused a terrible headache for which I was given lots of pain pills. It has been about 6 months since I stopped it, and I still have the headache. It's like the headache switch was turned on with it and will not turn off.
Also had to stop many other meds because the headache gets intolerable. My llmd just Rx'd Valtrex for 3 months and hoping this will help.
-------------------- tj Posts: 296 | From Portland, OR | Registered: Jun 2003
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dontlikeliver
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Hi Jill,
So, is it possible that before you even started the ketek (and herbs) that you already had a problem with your liver, which was further aggravated by adding the Ketek and herbs?
My LLMD said to me he has only seen one serious case of raised liver enzymes with one patient. That patient had combined lots of herbs with Ketek.
I think with Ketek it's important to do just 'one thing at a time'. And, get LFT done every 3 weeks.
DLL
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Jill E.
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Hi DLL (love your screen name),
My liver enzymes were always completely normal before going on Ketek. But ten years before Lyme I had some normal and some abnormal liver detoxification tests from Great Smokies Lab so who knows how my liver's strength was to start. But I had no liver enzyme problems on months of Doxy, before the Ketek, and I've had no problems with liver enzyme problems on months of Omnicef or now with IM Bicillin. So I think it will always be a mystery whether it was Ketek alone, or Ketek in combo with herbs/supplements, or just some freakish interaction that caused such severe damage. I have heard from a board member of my state's Lyme Disease Association that several Lyme patients have complained about liver problems with Ketek. But I also know that Dr. B. and others continue to feel strongly that this is a wonderful medication for Lyme, and it certainly was great for my symptoms while I was on it. We're all such individuals, it's hard to make generalizations. But the lesson I learned is to be even more vigilant with blood tests - I now do liver enzyme tests every two weeks - as well as upping my CBC and other tests.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Dave6002
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quote:...Ketek it's important to do just 'one thing at a time'
Probably right. I asked my LLMD if I could combine Ketek with others, his answer was NO.
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