[ 26. January 2006, 11:09 AM: Message edited by: treepatrol ]
Posted by robi (Member # 5547) on :
I was on Ketek 800mg(taken allat once) for about 10 months. I stopped that one a switched to some other meds about 5 months ago.
Like all of this, its hard to tell what worked and what didn't. I think it helped. I had none of the side effects from it. I would do it again if necessary.
Hope this helps..... good luck with it.
I will say the two thinks I know helped are mino and rifampin. I herxed badly from mino and then made a big leap forward. I am still on mino. I also am on rifampin now. Not as dramatic as mino but noticing some gains.
Do we ever really know what works????
robi
Posted by LC (Member # 7070) on :
Robi- I agree with you. Never really know what works or not.
Tree- I was on Ketek for about 13 months. I experienced the focusing issues....switching from far to close range, it takes a second or two to focus. Overall my situation has improved (slowly) in the last year. Not sure if Ketek is responsible for that.
Been off for about two months now, focusing slightly better. May take time....
I start Mino this weekend....I'm nervous.
LC
Posted by elle (Member # 7721) on :
I started taking ketek in early Oct 05 and i'm still taking it. The first thing I noticed was that I became an emotional fruitcake and then the paranoia set in. I'm not sure that either of those were because of the ketek. More likely the lyme symptoms clearing due to the ketek.
Thankfully, I'm not an emotional fruitcake any longer and my paranoia has also resolved, whew which is really good thing.
I was doing incredibly well (full focus, good energy, almost better than pre lyme - with exception of partially frozen shoulder) up until about 5 weeks ago when I started having increasing eye and muscle (not joint) problems. Not sure what is going on and I don't see my llmd until tomorrow.
The last visit the increase in symptoms had just started and she stated - herx. The muscle weakness, pain has increased and now includes more areas/muscle groups. Up until this time I haven't had problems with my eyes at all, so I'm not sure what is going on.
Persons with more lyme experience than I, tell me that the eye problems may be due to babesia (which i have) or bart (which I did not test positive for but had many symptoms) and may not have anything to do with the ketek.
Over the months, Ketek has been an easy abx to take and I think it has been very effective.
Posted by Corgilla (Member # 4066) on :
Hi,
I took Ketek for about 6 months last year. When I added mino, I started having heart problems. Ketek or Lyme heart related, I don't know.
I stopped all abx for a few weeks and started back on just mino. Still having heart problems but not as bad.
We then added Bactrim for staph infection and heart problems are back full force every time I take mino. Bactrim alone is no problem. Can feel it working on TBDs too.
In the back of my mind, I wonder if Ketek may have screwed up my ability to combine abx or whether mino is just something I can't combine with anything. I wish my LLMD would take me off mino. I really hate the stuff to the point of being non-compliant with my therapy.
While on Ketek, I felt a LOT better than many other abx I've taken. I think there's a "Ketek Buddies" thread out there somewhere you might want to check out.
Take care,
Corgilla
Posted by vachick (Member # 8353) on :
I'm starting on Ketek tomorrow. Will relate my experience. I have chronic Lyme with terrible muscle issues so this should be interesting. I herxed badly on Biaxin.
Posted by Monica (Member # 224) on :
I started on Ketek (800 mg daily at once) 10 1/2 months ago. It started me herxing immediately and I am still herxing to some extent.
Started using a walker immediately after beginning the Ketek (had used a cane but it became inadequate). Still have to use it.
Also taking Plaquenil and Doryx.
Improvement is very slow.
Posted by Green Darkness (Member # 985) on :
Had to get off Ketek due to liver damage; was on it for 9 months.
Posted by James H (Member # 6380) on :
I was on it at 400mg BID a couple of times for about a month, and with either a penicillin or a cephalosporin.
It was well tolerated, but it didn't seem like it was doing much. There was always a problem getting insurance to cover it, and since the results were not that impressive I just moved on.
The in vitro tests on Ketek for Lyme indicate about 3 days of Ketek should totally cure a person of Lyme. What a total waste of lab time!
You take an organism that is extremely difficult to culture, and manage to get it to cling to life in some kind of culture medium. Then you try to kill it with your medicine. Guess what, it isn't hard to kill under those conditions, since it is barely alive and has no defenses.
The only way to do a meaningful test with this infection is in living tissue.
The best I can say is it didn't cause any problems.
Posted by mlkeen (Member # 1260) on :
I've been on Ketek twice, for short periods.
My blurry vision improved for about two weeks and then went blurry again, both times. llmd is as pussled as I.
Other wise all was good.
Mel
Posted by treepatrol (Member # 4117) on :
up for more experiences
Posted by dontlikeliver (Member # 4749) on :
Improved lots on 4 months Ketek April-end of August. Then got stomach problems, which may or may not be related to Ketek. When restarted Ketek in October, stomach worse again. Stopped Ketek again and am due to restart this week. Stomach still not good with on and off stomach aches and upset stomach/gas/diarrhea. I have been off Ketek for so long though, and on lotsof Diflucan, I am wondering if my stomach problems were never ketek related in the first place, but something else.
DLL
Posted by cstockwell (Member # 8201) on :
Beware of Ketek...important article...please read: Ketek Msnbc article Posted by treepatrol (Member # 4117) on :
quote:Originally posted by cstockwell: Beware of Ketek...important article...please read: Ketek Msnbc article
They tell you in there handouts to watch for yellowing of eyes and eye problems and also have your liver funtions tested which my LLMD does every other month. Thanks though for heads up.
Posted by cstockwell (Member # 8201) on :
Yeah..I wasn't trying to say don't take just read up and be careful. We ingest enough things already that may not be good for us.
Posted by treepatrol (Member # 4117) on :
Ketek Active Ingredients: Telithromycin Representative Names: Ketek Available Product Images:
What are telithromycin tablets? What should my health care professional know before I take telithromycin? How should I take this medicine? What if I miss a dose? What drug(s) may interact with telithromycin? What side effects may I notice from taking telithromycin? What should I watch for while taking telithromycin? Where can I keep my medicine?
What are telithromycin tablets? (Back to top) TELITHROMYCIN (Ketek�) is an antibiotic. Telithromycin kills certain bacteria or stops their growth. It treats lung, sinus, and throat infections. Telithromycin will not work for colds, flu, or other viral infections. Generic telithromycin tablets are not yet available.
What should my health care professional know before I take telithromycin? (Back to top) They need to know if you have any of these conditions: *diarrhea *heart disease *irregular heart beat or abnormal heart beat *kidney disease *liver disease *low blood potassium (hypokalemia) or magnesium (hypomagnesemia) *myasthenia gravis *stomach problems (especially colitis) *other chronic illness *taking cisapride (Propulsid�), pimozide (Orap�), or certain medicines known as antiarrhythmics (such as quinidine, procainamide, or dofetilide) *an unusual or allergic reaction to telithromycin or macrolide antibiotics (such as erythromycin, azithromycin, clarithromycin, or dirithromycin), foods, dyes, or preservatives *pregnant or trying to get pregnant *breast-feeding
How should I take this medicine? (Back to top) Take telithromycin tablets by mouth. Follow the directions on the prescription label. Take the tablets with a full glass of water. You may take telithromycin tablets with or without food. Take your doses at regular intervals. Do not take your medicine more often than directed. Finish the full course prescribed by your prescriber or health care professional even if you think your condition is better. Do not stop taking except on your prescriber's advice.
Contact your pediatrician or health care professional regarding the use of this medicine in children. Special care may be needed.
What if I miss a dose? (Back to top) If you miss a dose, take it as soon as you can. If it is almost time for your next dose, take only that dose. Do not take double or extra doses.
What drug(s) may interact with telithromycin? (Back to top) *alfentanil *alosetron *astemizole *carbamazepine *certain benzodiazepines (alprazolam, diazepam, midazolam, triazolam) *certain heart medications (digoxin, diltiazem, disopyramide, dofetilide, felodipine, metoprolol, nifedipine, procainamide, quinidine, verapamil) *certain medicines to treat fungal or yeast infections (itraconazole, ketoconazole, voriconazole) *cisapride *cyclosporine *donepezil *ergot alkaloid medicines, like ergotamine *lidocaine *medicines to treat viral infections (delavirdine, indinavir, nevirapine, ritonavir, saquinavir) *methylprednisolone *norethindrone *paricalcitol *phenytoin *pimozide *rifampin *sirolimus *some 'statin' medicines for reducing cholesterol (examples: atorvastatin, lovastatin, simvastatin) *tacrolimus *terfenadine *theophylline *trimetrexate *zonisamide
Tell your prescriber or health care professional about all other medicines that you are taking, including non-prescription medicines, nutritional supplements, or herbal products. Also tell your prescriber or health care professional if you are a frequent user of drinks with caffeine or alcohol, if you smoke, or if you use illegal drugs. These may affect the way your medicine works. Check with your health care professional before stopping or starting any of your medicines.
What side effects may I notice from taking telithromycin? (Back to top) Side effects that you should report to your prescriber or health care professional as soon as possible: *difficulty breathing *fainting spells *jaundice (yellowing of the skin and/or eyes) *redness, blistering, peeling or loosening of the skin, including inside the mouth *severe or watery diarrhea or persistent diarrhea *skin rash, itching *swelling of tongue or throat *vomiting
Side effects that usually do not require medical attention (report to your prescriber or health care professional if they continue or are bothersome): *diarrhea *dizziness *headache *nausea *vision problems such as blurred vision, difficulty focusing, and objects doubled
What should I watch for while taking telithromycin? (Back to top) Tell your prescriber or health care professional if your symptoms do not improve in 2 to 3 days. Make sure to take all of this medicine as prescribed, even if you begin to feel better.
If you get severe or watery diarrhea, do not treat yourself. Call your prescriber or health care professional for advice.
If you have vision problems while taking telithromycin, avoid driving, operating heavy machinery, or engaging in otherwise hazardous activities. You should also avoid quickly looking between objects in the distance and nearby; this may help to decrease these visual difficulties. If these vision problems interfere with your daily activities, contact you healthcare provider.
Telithromycin has been reported to cause liver problems. If you notice a yellowing of the skin or eyes, stop taking telithromycin immediately and contact your healthcare provider.
If you have fainting spells while taking telithromycin, contact your healthcare provider. Telithromycin may be affecting the way your heart beats.
If you have a disease called myasthenia gravis, telithromycin may worsen your symptoms. If you experience any worsening of your symptoms (such as muscle weakness, difficulty breathing) while taking telithromycin, stop taking telithromycin and contact your healthcare provider immediately.
If you are going to have surgery, tell your prescriber or health care professional that you are taking telithromycin.
____________________________ ____
____________________________
Yeah..I wasn't trying to say don't take just read up and be careful. We ingest enough things already that may not be good for us. ____ ______ ___________ I understand thanks again. Posted by dontlikeliver (Member # 4749) on :
most medicines can cause liver problems, even Tylenol.
DLL
Posted by vachick (Member # 8353) on :
Is there ANY abx that doesn't cause such damage? I was on Biaxin at first and then people said that could kill me and now I am going on Ketek and apparently that could kill me, too?!?!?! I have had a liver cyst before and an enlarged heterogeneous liver...not sure what abx will do to me. Hmmm...I'm not even sure I have Lyme so I am wondering why I should even risk it by taking these abxs!!
Posted by dontlikeliver (Member # 4749) on :
If there is a chance you have Lyme (a suspicion), it is less of a risk to treat it than to 'wait it out' and not treat.
If we read the labels of any drug, like I said even Tylenol (people use it to kill themselves), then we can scare ourselves half to death. There is a risk to everything. Don't let it put you off ridding yourself of a horrible disease.
DLL
Posted by dontlikeliver (Member # 4749) on :
Having said the above, I got this by email, and it is pretty scary. I wish I wouldn't have seen it, but on the other hand, I want to know also:
Updated: 12:37 p.m. ET Jan. 20, 2006 WASHINGTON - Researchers reported Friday three cases of severe liver problems, including one death, in patients at a North Carolina hospital after they began taking a novel antibiotic.
Federal regulators said they were reviewing an unknown number of U.S. cases involving the drug, telithromycin, and were consulting with their counterparts overseas.
One patient at Carolinas Medical Center in Charlotte, N.C., died after taking telithromycin, which is marketed as Ketek, researchers at the hospital said.
Another required and received a liver transplant, while the third recovered from drug-induced hepatitis after treatment with Ketek was stopped.
The severity of the cases warranted the researchers’ alerting doctors to what they called a “possible link with telithromycin,” said Dr. John Hanson, who works in the liver transplant center at Carolinas Medical Center.
The reports do not prove the drug caused the problems, researchers said. Nor is there enough information to support major changes in how the drug is prescribed, Hanson said. Two of the three patients reported some use of alcohol, although there was no prior evidence of liver damage.
The cases are discussed in a paper to be published March 21 in the journal Annals of Internal Medicine. The journal released an electronic version on Friday.
The drug is made by Sanofi-Aventis. A company spokeswoman did not immediately return a message seeking comment left midday Friday.
The Food and Drug Administration approved the drug, marketed as Ketek, in 2004 for treatment of acute bacterial infections from chronic bronchitis, acute bacterial sinusitis and community-acquired pneumonia. On Friday, FDA spokeswoman Susan Bro said the agency would comb through its databases for other reports of liver problems in patients treated with the drug.
“Because these liver problems are significant and somewhat idiosyncratic or unpredictable, the FDA is evaluating the use of this medicine in both the U.S. and abroad where it is used and marketed to determine whether additional warning guidance is merited,” Bro said.
Bro cautioned that patients on the drug who experience any sort of liver distress, including jaundice, should talk to their doctors immediately.
NBC10.com Roundup: Ketek Warning; Harry Potter And Kids' Injuries; Waistline And Health Risks
POSTED: 5:33 pm EST January 20, 2006 UPDATED: 5:44 pm EST January 20, 2006
Antibiotic Linked To Liver Failure, Hepatitis
There is a warning about an antibiotic that has been linked to two cases of liver failure and has been implicated in a case of hepatitis -- all at one medical center.
The drug is Ketek.
According to the Annals of Internal Medicine, one person has died, one has received a liver transplant and another has recovered from drug-induced hepatitis.
If you take Ketek and feel tired or weak -- or if you become jaundiced, which means to get yellow skin -- report it to your doctor immediately.
[ 21. January 2006, 04:39 AM: Message edited by: dontlikeliver ]
Posted by Nal (Member # 6801) on :
Ok, I have read the articles. Im tired personally of reading all the horrible things that can happen with antibiotics. Like someone else on here said, even Tylenol can kill you.
Whats a person to do then??? My dr wants to try me on Ketek. I was all for it but then I get scared off reading these articles and it's almost too much.
Nancy
Posted by treepatrol (Member # 4117) on :
Today Monday 23rd 06
Ketek experience Eyes red sorta bloodshot itchy been like that since friday 13th 06 Sleeping better but feel sleepy yet when I get up.
As far as my body on ketek I feel normal. Like Iam not on a abx. Odd isnt it? Had one bowel movement watery the rest normal.
Uopdate next monday the 30th
Posted by luvs2ride (Member # 8090) on :
dontlikeliver
I'm not so sure about precautionary treatment of Lyme. If vachick is not sure she has it, could it be she does not have symptoms? If she does not have symptoms, how will she know when she has taken enough antibiotic? From what I can read, it is bad to stop the antibiotic too soon as the remaining bacteria will just become more resistent.
I'm not sure why vachick thinks she might have it but is not sure. If she has symptoms but not a positive bloodtest, well, we all know that story and she should treat. If, on the other hand, she has no symptoms, I don't think she should treat.
Dr. K talks about people having the bacterial infection but no symptoms and people having the bacterial infection with symptoms. He only classifies the last group as having Lyme disease.
I also read that if we tested all people, 95% would have the bacteria.
Posted by luvs2ride (Member # 8090) on :
Nal,
It is tough.
What we, the people, need to do is demand the medical profession research and find safer alternatives to antibiotics. We can use the antibiotics (which I call the powerhorses) for those situations where quick, fast action is needed. Get in, get the job done, get out!
All of us chatting here at Lymenet are good case-in-point examples that antibiotics don't resolve this disease quickly and by themselves not permanently. More research needs to be done on alternative care. Big Pharma will never spend the dollars on it, because they won't get the return on their investment. Longterm antibiotic use is good for their bottom line. Does that mean we should just continue to gulp down their dangerous drugs when something safer could be just as effective?
Posted by liz28 (Member # 4946) on :
I've been on it for 1 1/2 years, always with tons and tons of liver support:
Dr. Zhang's Hepa Formula 2 (active ingredient schisandra) NAC (by the handful) Phosphatidylcholine (i.e. refined lecithin) Zinc Milk thistle CoQ10 Selenium Alpha lipoic acid
When I first started taking it with omnicef, it reduced my soup of symptoms so much that it was finally possible to tell the Lyme and the co-infections apart. I continued on it while doing a five-month bartonella treatment, which so far seems to have worked. Now I'm doing a full-blast babesia treatment.
There have been no Lyme or bartonella symptoms for at least a month. It was never able to squelch the Lyme on its own, but made the omnicef much more effective. I had previously been on zithromax and plaquenil for years with almost no improvement, and had no response at all to biaxin.
If it were possible to do this whole thing over again, I'd have treated the bartonella first, then the babesia, then the Lyme with ketek. Maybe it's like flagyl, a highly effective antibiotic you only want to use in the short term, as a kicker to finish up the job.
Posted by James H (Member # 6380) on :
Ketek was originally approved for treatment of pmeumonia. I wonder how many lives it has SAVED?
Virtually all medications have risks, but these have to be weighed against the risks of not treating or undertreating serious disease.
I've done that math and I'll take my chances with the meds, thank you.
Posted by treepatrol (Member # 4117) on :
up for monday 23 06
Posted by blackbirdsings (Member # 7972) on :
I'm on Ketek and started herxing over the weekend. I went from feeling pretty human to really horrible and barely functioning again. We cut the dose in half like the llmd said we could and it it starting to lessen. This is rough, I was really excited over how much better I was feeling.
Any others herx on this? How long did you all herx for and than did you feel better-ish?
Thanks!
Posted by psano (Member # 7785) on :
After that article about the Ketek related deaths, I contacted my LLNP, since I've had elevated liver enzymes on Ketek. She told me not to worry, that the famous Dr. B has been treating thousands of patients for many months with no problems.
When my enzymes first went up, I was taking 400mg twice a day and Bicillin LA 1.2mu once a week. I stopped all abx for a month, during which time I started taking milk thistle and 300mg ALA twice a day on the directions of my LLNP.
After a month my enzymes had dropped to a level that I could start abx again, and so started Ketek again, but continued w/the milk thistle and ALA. Since then, my liver enzymes have only kept going down. I've been getting my labs checked about every 2 weeks.
I think one of the lessons here is to monitor your liver function closely, and take those supplements that are protective to your liver, such as the milk thistle and ALA.
Posted by treepatrol (Member # 4117) on :
Wifes had as of since date 1/23/06 and 1/25/06 and today 1/26/06 :Headache 1 hr after and stomach ache twice one bad lastnight25th.
Posted by treepatrol (Member # 4117) on :
Feeling good ! can hardly tell iam on ketek wifes headaches stopped too Updated 1/30/06
Posted by vachick (Member # 8353) on :
Saw my doc today and he wants me to up my dose to twice a day. Given the liver problems it can cause I am not sure what to do. My liver already has had issues in the past (a cyst/adenoma and enlarged).
Anyway, so far my herxing has been minimal but that may be due to lower dose. I feel better in some areas already, even though I have only been on it about 7 days.
After another week on it, I will get my liver enzymes checked.
Posted by mountainmoma (Member # 6503) on :
I started back on my two weeks on of Ketex last friday. I feel energetic on it. But, doing so much ABX 2 ketex in the morning and the other one twice a day, makes me pretty wound up and I have trouble sleeping. Last night I slept very little and am pretty tired, so Im about to take my second dose of the otherABX Im on, and hope it doesnt jack me up again. Im due to do my monthly blood draw, actually overdue, so Im going to try and find time in the next few days. I put it off so I could do it during my "on Ketex" weeks, rather than the off ones
Posted by WildCondor (Member # 434) on :
On Ketek for 2 months, gave me a severe herx, then gave me c.difficile and I have not been the same since, I will never take it again, it killed my intestines. Posted by luvs2ride (Member # 8090) on :
I have already discussed this under my RA diagnosis post but am adding it here because I feel Ketek was a culprit in bringing on RA.
Leaky Gut Syndrome. This really applies to me. I was on Advil almost daily since this began last August. I took 3 weeks of Ketek over Christmas and it was during this time my stomach began to burn some.
Yesterday I looked again at the side effects of Ketek which were given to me by the pharmacy and was shocked to read this: This medication may rarely cause a severe intestinal condition (pseudomembranous colitis) due to a resistant bacteria.
Definition of Pseudomembranous colitis: Pseudomembranous colitis is a complication of antibiotic therapy that causes severe inflammation in areas of the colon (large intestine).
Definition of Leaky Gut Syndrome: The leaky gut syndrome is the name given to a very common health disorder in which the basic organic defect (lesion) is an intestinal lining which is more permeable (porous) than normal. The abnormally large spaces present between the cells of the gut wall allow the entry of toxic material into the bloodstream that would, in healthier circumstances, be repelled and eliminated.
The gut becomes leaky in the sense that bacteria, fungi, parasites and their toxins, undigested protein, fat and waste normally not absorbed into the bloodstream in the healthy state, pass through a damaged, hyperpermeable, porous or "leaky" gut. This can be verified by special gut permeability urine tests, microscopic examination of the lining of the intestinal wall as well as the bloodstream with phase contrast or darkfield microscopy of living whole blood.
The leaky gut syndrome is almost always associated with autoimmune disease and reversing autoimmune disease depends on healing the lining of the gastrointestinal tract. Any other treatment is just symptom suppression. An autoimmune disease is defined as one in which the immune system makes antibodies against its own tissues. Diseases in this category include lupus, alopecia areata, rheumatoid arthritis, polymyalgia rheumatica, multiple sclerosis, fibromyalgia, chronic fatigue syndrome, Sjogren's syndrome, vitiligo, thyroiditis, vasculitis, Crohn's disease, ulcerative colitis, urticaria (hives), diabetes and Raynaud's disease. Physicians are increasingly recognizing the importance of the gastrointestinal tract in the development of allergic or autoimmune disease. Understanding the leaky gut phenomenon not only helps us see why allergies and autoimmune diseases develop but also helps us with safe and effective therapies to bring the body back into balance.
While it may be a rare disease, I bet it is not so rare with Lyme victims. We take a lot of abx and NSAIDS. NSAIDS are one of the prime causes of LGS. I believe the Advil I took almost daily for 5 mths was a big contributor and when I added Ketek to the mix, it took my intestines down.
Posted by dontlikeliver (Member # 4749) on :
Hi Luvs2ride,
This is not to invalidate what you're saying at all, but to add to it.
I think that ANY antibiotic (when you read the inserts/small print) has the risk of causing pseudomembranous colitis. It is not exclusive to Ketek I don't think.
Also, *most* people who are chronically ill with Lyme (and some other conditions too), have leaky guts already (before ANY treatment), which of course, can be made worse by antibiotics.
DLL
Posted by vachick (Member # 8353) on :
So, does anyone know how to treat Leaky Gut? I have suspected that I have Leaky Gut before this whole Lyme diagnosis hit me.
I am unsure what to do to heal it though.
I am getting ready to up my dose of Ketek to twice daily which frightens me given what I am hearing here.
Between Ketek killing people, causing liver damage and worsening an already leaky guy, I feel it is hard to survive this treatment!
Posted by lucy (Member # 7802) on :
I was on Ketek for a short time. It didn't seem to do as much for me as Doxy which I switched back to.
It was only in retrospect, that I realized how anxious and emotional I'd been on Ketek.
Posted by dontlikeliver (Member # 4749) on :
vachick,
Ketek is also giving people their lives back with minimal side effects. I think what you've read about really are exceptions.
I saw a doctor here in the UK who said that for leaky gut one should avoid gluten first of all, as most (his words) chronic Lymies have gluten intolerance, which is either caused by, or a result of, leaky gut.
I also take L-glutamine, which is also recommended for that.
I am sure there are other supplements, and other tips out there, but don't know off hand.
DLL
Posted by vachick (Member # 8353) on :
Don'tLikeLiver, I appreciate that Ketek is giving people their lives back...I really want that, too. In fact, I am taking Ketek at a low dose currently.
However, my concern is more long term. What could this stuff do to our livers and other organs in the long term?
Are there other methods for irradicating these bugs without harsh abxs?
Posted by dontlikeliver (Member # 4749) on :
I know people who have been on various abx for several years and do not have damaged livers. I have been on them about two, and have never had elevated enzymes (was also on Mepron alongside). Having said that, I do worry a bit myself every day that I am taking the Ketek. But, again any antibiotic, or many other drugs also, can cause liver problems......right not, for me, it is a risk I feel I have to take. I want to get well, and so for now, I take the Ketek. I have felt very good on Ketek, and although I had to take a long break, twice, the improvement has remained, even though I have relapsed a bit.
I don't know of any alternative "harmless" methods that actually work, or that work long term, on their own without adding antibiotics into the equation.
If you're not happy with ketek though, maybe you should ask for another abx.
I am talking with my LLMD tomorrow and will ask what he thinks also about ketek, given the bad press last week.
DLL
Posted by WildCondor (Member # 434) on :
Just so there is no confusion, Pseudomembranous colitis IS caused by clostridium difficile (c.diff, c.difficile) bacteria. It's the severe version of it. It can start with diarrhea and progress to fever, abdominal cramping pain, and cold swets & chills. It can happen with ANY antibiotic use. Some are worse than others. Clindamycin and Amoxicillin seem to be the worst along with cephalosporins. Flagyl, oral vancomycin & occasionally Rifampin are used to treat it along with Questran (cholestyramine). Believe me it is EVIL. I have been fighting ot for a year! Ketek did it to me, so just be careful and take sacc. boulardi (Florastor) and your probiotics every day!
Posted by dontlikeliver (Member # 4749) on :
WildConder,
How did your C. Diff symptoms start? Was it an overnight thing, or a more slow insidious thing?
Somewhere, and I don't know where (possibly on LYmenet), I recall reading that S Boulardii (which is a fungus) can grow out of control in the body and become a systemic fungal infection. So, after thinking it was some kind of anti-C-Diff miracle probiotic, now I am confused about it.
Because I have had, on and off, stomach aches, episodes of sudden but brief diarrhea, which started coming on about 1 hr after taking my Ketek; gas and constipation (not debilitating) since September - I have been on and off the Ketek since then because I thought it was the Ketek causing it.
I had 3 tests for C Diff (negative), and still my stomach is not right since Sept......and because I read that the S Boulardii can become a problem in itself, I am now selling all my Primal Defense because it was suggested to me that in fact it could be the Primal Defense giving me the stomach problems, because the gas, stomach aches, constipation alternating with loose or very loose (not diarrhea hardly at all when I stopped the ketek), come and go even when NOT on abx now.
I just don't know if the ketek started the stomach problems off, or if it is a different problem altogether, or a side effect of taking too much Primal Defense, I was taking quite a lot.
DLL
Posted by treepatrol (Member # 4117) on :
Still feeling good on ketek wife too 2/2/06GoundHog Day. up for weekenders since iam not going to be around friday.
Posted by 5dana8 (Member # 7935) on :
For what it's worth Ketek was the first abx to totally trash my stomach.
It produced some wicked herx's and think if my stomach had held out I would have made more progress.
Posted by treepatrol (Member # 4117) on :
Wife and I still pretty good on Ketek todays date2/06/06.I have some low back pain today may have slept wrong. Up for the week.
Posted by dontlikeliver (Member # 4749) on :
I'm entering week three of my third round of Ketek (did April-Sept, Oct-Nov previously but had to stop due to stomach problems). Despite that, the Ketek has helped me a lot and even though I've had long breaks, I have not gone back to the beginning.
So far it's going OK. My stomach is still sporadically unhappy, but it has been going on like that for months now whether I'm on abx or not it seems.
DLL
Posted by AZURE WISH (Member # 804) on :
I have been on antibotics since 2000.
The only time my liver enzymes elevated was due to gullbladder issues.
I have been on Ketek since..... fall of 04 ...not sure the exact month.
I have made great improvements... although I am still disabled... I have been making a steady progression towards reclaiming my life.... I am confident that Ketek will give me my life back.
I take 800mg once a day. My llmd checks my liver and whatnot regurarly.
Without antibotics I would still be sleeping my life away and by now the pain would be so bad I would be paralyzed ... I could barely walk for a few periods of time....... so I have been close to being paralyzed already.....
I am definetely willing to take the risk to get my life back.
Posted by mountainmoma (Member # 6503) on :
Im pretty out of it this week, second week of my two weeks on with ketex. tomorrow I start my two weeks off. Very brain foggy, tired, etc..... Does this make your vision worse ? Or is it my imagination. Anyway, definate worse vision, maybe Im getting older. Went to my llmd yesterday, lost another pound, teperature of 95.5, BP of 80/60, pulse of 60. Results back fron blood draw I did last week, slightly low white blood cells, anemia gone, other things slightly too high or too low, but I did have slightly high liver number. This is a new one for me. But, it is barely out of range. fourty something. So, I will keep cycling 2 weeks on, 2 weeks off and we will keep monitering it.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by mountainmoma: Im pretty out of it this week, second week of my two weeks on with ketex. tomorrow I start my two weeks off. Very brain foggy, tired, etc..... Does this make your vision worse ? Or is it my imagination. Anyway, definate worse vision, maybe Im getting older. Went to my llmd yesterday, lost another pound, teperature of 95.5, BP of 80/60, pulse of 60. Results back fron blood draw I did last week, slightly low white blood cells, anemia gone, other things slightly too high or too low, but I did have slightly high liver number. This is a new one for me. But, it is barely out of range. fourty something. So, I will keep cycling 2 weeks on, 2 weeks off and we will keep monitering it.
Yes it can effect vision temporarly sounds like your herxing too. Watch eyes for any yellowing and skin too.
ketek info Posted by treepatrol (Member # 4117) on :
up this week
Posted by dontlikeliver (Member # 4749) on :
Well, I'm doing OK as far as the ketek's concerned, have not had a return of the diarrhea (yet anyway)
........but I do find it hard to tell if there is any herxing as I am doing 4 days on, 3 days off. Especially as for two weeks now I have had very very sore and swollen tonsil 'stubs' (tonsils were taken out, but have kind of stubs there), bit of ear ache and generally feel run down and awful. At first I thought it's a herx, but then as it's gone on and on and on without change even on my 3 days OFF ketek a week, I don't know. I think if it was a herx, it would let up on my days off.
How are you doing yourself Treepatrol?
Posted by treepatrol (Member # 4117) on :
As of today 2/15/06 I have slight pain in left ankle and have some strange low low key pains wierd not like a herx or at least not any I have had before? Teeth are jumpy cold or hot water this was a big key to my wifes herx's before I never really had teeth pain? My last blood test levels okay except my uric acid is high gout? probaly a result of me drinking diet caffiene free pepsi and just switching and sticking to atkins diet induction phase all this jumps up.
Now Iam trying to add the right carbs with alkalizing effects and I cut out the diet pop.
Also my Dr has me getting blood tests every month now while on ketek watching liver closely.
My last 3 blood pressures were high 157/90 158/90 this one at last visit was down to normal 120/70. Anyhow I also am experiancing quick rage like temper reactions?
But Iam again under a great deal of stress . Prayers allways appreciated.
ps I forgot I have had the thumpity thump thump in my heart a couple of times to. I got that symptom about a year ago. Since being on ketek its happened a couple of times?
[ 15. February 2006, 02:20 PM: Message edited by: treepatrol ]
Posted by Gabrielle (Member # 5329) on :
Ketek helped me tremendously. I felt very good on it, never had any problems with my stomach, gut or liver.
It is prescribed in Germany since 2001 and has been prescribed worldwide about 4 million times, in the meantime.
It is known that it metabolizes via the liver but so do other abx. As to the three reported cases of liver damage: I find it very strange that not only
- all 3 cases occurred in the US, but - all 3 cases happened in North Carolina and not enough - all 3 cases happened in the Medical Center in Charlotte
I really wonder how such a coincidence could happen. The doctors there must have done something wrong with these patients. Just my opinion.
Gabrielle
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by Gabrielle: Ketek helped me tremendously. I felt very good on it, never had any problems with my stomach, gut or liver.
It is prescribed in Germany since 2001 and has been prescribed worldwide about 4 million times, in the meantime.
It is known that it metabolizes via the liver but so do other abx. As to the three reported cases of liver damage: I find it very strange that not only
- all 3 cases occurred in the US, but - all 3 cases happened in North Carolina and not enough - all 3 cases happened in the Medical Center in Charlotte Medical Center in Charlotte
I really wonder how such a coincidence could happen. The doctors there must have done something wrong with these patients. Just my opinion.
Gabrielle
Thanks Gabrielle Yeah thats interesting.
Posted by treepatrol (Member # 4117) on :
Telithromycine and myasthenia gravis
Spain -- The Spanish Medicines Agency, in line with other Agencies of the European Union, has announced the urgent modification to the data sheet information concerning administration of telithromycine (Ketek�) in myasthenia gravis patients. Telithromycine is a semi-synthetic substance derived from erythromycin marketed in the European Union since July 2001. Its use is limited to adults for treatment of community acquired pneumonia, severe bronchitis or sinusitis.
For patients over 12 years of age, it is also indicated in group A streptococcal pharyngitis and tonsillitis when beta lactam antibiotics are not considered appropriate.
Eight cases (one fatal) of exacerbation of myasthenia gravis have been reported in association with use of telithromycine. Symptoms reported were exacerbation of muscular weakness, dyspnoea, and acute pulmonary failure within a few hours of administration.
The mechanism of action causing worsening of myasthenia gravis is unknown, but cases have been reported in association with aminoglycoside, macrolide antibiotics, and certain fluoroquinolones.
The following points are brought to the attention of prescribers: 1. Given the severity of risk, telithromycine is not indicated in myasthenia gravis patients unless alternative treatment is not available.
2. Myasthenia gravis patients using telithromycine should be closely monitored and should report immediately to their physician any worsening of symptoms. Treatment should be discontinued in such cases. Reference: No. 2003/05, 23 April 2003. http:/ www.msc.es/agemed Posted by treepatrol (Member # 4117) on :
Wife off ketek as of 2/19/06
Reason she has a hive like rash all over pretty much arms hands,under breasts,belly butt,and inner thighs, and feet now tuesday started on feet.
Itchy burny rash started little white bumps turning red. Also has yeast infection which is calming down,but rash does respond to beydryl cream also we have been eating lots of cashews and some peanuts.
Benydryl cram only last a couple of hours.
We arnt sure llmd and me if its the peanuts cashews or ketek, or yeast so off ketek and I increased acidophilis and getting diflucan for yeast tonight.
[ 24. February 2006, 08:27 AM: Message edited by: treepatrol ]
Posted by treepatrol (Member # 4117) on :
Up for more responces updates anybody still on it?? How you doing?
Posted by dontlikeliver (Member # 4749) on :
Still on it. Still doing OK.
Posted by mountainmoma (Member # 6503) on :
I take it two weeks on, then two weeks off.
I just started today on my two weeks taking it. So, we'll see how it goes.
I have been doing very good on my break time. I just came back from 3 days in tahoe skiing with the kids. And, no, Im not skiing like I used to. Im very skilled in skiing, so it doesnt take alot for me to follow an 8yr old down the bunny slope. And the middle day I didnt do anything. And, yes, I have some soreness and tiredness, Im not getting much done now that Im home. BUT, nothing like how bad I expected it would be. Im thrilled realy.
Im expecting to herx and feel like **** this time next week cause the ketex and artemisinin are now added in my mix. Ill let you know how it goes.
But, if I keep getting slowly better, I can handle the herxing I get pulsing.
Posted by mountainmoma (Member # 6503) on :
I agree that yeast overgowths easily on Ketex.
Posted by 2manyticks (Member # 8869) on :
I had (have?) nuerological lyme - lots of memory problems, confusion, anxiety and fatigue, but minimal or no joint pain. I did about 2 years of treatment progressing thru doxy to augmentin to omnicef, bicillan, biaxicin,zithromax and flagyl in various combos. I felt consistenly bad, worse than before I'd started antibiotics. But since i've had literally hundreds of tick bites, and positive test results, I kept going.
At the end of all this I took Ketek for about 6 weeks along with amoxicillan, IM rocephin (4 times a week), and Flagyl (3 days a week). This is the most abx I have ever taken at the same time during my 2 year treatmnet. I felt pretty bad, but the addition of Ketek to this brew seemed to cause the worst symptoms. The visual stuff was bad. I had a hard time focusing, blurry, and dizzy. Each eye was focusing differently at different times.
I ran out of Rocephin after 6 weeks on this regime, and my #@!&! insurance company would not pay for more. But since I'd developed a super bad case of candida everywhere, I decided to stop all the antibiotics, and went on diflucan alone, plus lots of probiotics, for about 33 days.
On the diflucan I got even worse. Maybe the worst herx I had in 2 years. I couldn't walk in a straight line, no energy, super high anxiety but no energy, I could not be around people, or bright light. I couldn't think straight or keep track of anything. After that i stopped all antibiotics
That was 7 months ago. I gradually began to feel better and I now I feel really good. Better than I've felt in years. I wish I knew what finally made me better me, but as I'd taken a lot of amoxicillan with no change, I'm guessing it was either the Rocephin or the Ketek.(The vision problems I blamed on the Ketek have resolved gradually.)
Or mperhaps it was the Diflucan? I have heard of a European doctor who claims to have cured himself and his patients from lyme with diflucan. And also, I think the diflucan was responsible for giving me the scariest herx I ever had. But who knows maybe it was a yeast die off.?
Has anybody else tried the Diflucan treatment for lyme?
Posted by treepatrol (Member # 4117) on :
Wife made a trip to emergency room couldnt get her breath they ran tests and everything looked good ?
They gave her a pill called Ativan that completly took care of it. I think she had a anxiety attack? The rash was going away the night before but her lips swelled a little trouble breathing then the next day worked herself into a frizzy couldnt catch her breath.
Anyway shes better now rash is almost all gone no itching either. So is the yeast infection no burning during urinating. It either was yeast or the cashews she was shovaling down for a week. I dont think itwas the ketek. will see 2/27/06
[ 28. February 2006, 07:55 AM: Message edited by: treepatrol ]
Posted by surg (Member # 6937) on :
I had to stop ketek. Been on it for about a month. It is just too toxic for my liver. Liver lab values are OK but I feel so toxic on it. Like when I've been on diflucan. I hate to stop because it has been working so well. The only antibiotic that has cut through the fatigue. I am going to work on my liver health first and then maybe try it again at a later date.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by surg: I had to stop ketek. Been on it for about a month. It is just too toxic for my liver. Liver lab values are OK but I feel so toxic on it. Like when I've been on diflucan. I hate to stop because it has been working so well. The only antibiotic that has cut through the fatigue. I am going to work on my liver health first and then maybe try it again at a later date.
Maybe you could get some milk thistle its one of the things ilads says can help?
Posted by happygranny (Member # 8779) on :
This board is full of lots of useful interesting information, and I am just now starting to post here.
I started Ketek 400 mgs 2 x day and Flagyl 500 mgs 2 x day on Nov 23rd.
It is interseting to read so many people having stomach problems because one of the 1st things I noticed is a huge reduction in acid reflux. I now only take pantaloc once in a while. I can now eat raw fruit and tomato dishes - haven't done that in a while.
After 3 months of these ABX my LLMD took me off Flagyl.
I did feel bloating which has gone now that I am off Flagyl.
Herxing big time in the first week and frequently since. Right now the pain is the worse part of my herxing symptoms. Really painful skin and muscles in my extremities. The last few days have been especially bad for pain and fatigue. I feel like my blood sugar is 0.
I have taken flucozonol and nystatin in pulses. Liver enzymes okay so far.
My pain med of choice has been tylenol 3, but now that the pain is so bad, I am not comfortable taking that much Tylenol 3s and today asked my GP for Neurontin. Hopefully this bad pain is herx-related and will settled down soon.
Because I have not tested positive for Lyme (Elisa test in Canada) and tested low for Ehlichiosis and Rocky Mtn, my GP is not convinced I have Lyme, and thinks my increased pain/fatigue is FMS and CFS related.
The LLMD doctor who gave me a clinical DX of Lyme in Nov is in BC and I live in Manitoba, so I don't see him as often as I should. His support is essential to my state of mind.
So, at this point I think Ketek is not hurting me, and although I have not had a lot of improvement in symptoms since starting the ABX in Nov, I am determined to keep at it for another month or so and re-evaluate at that time.
Thanks for being here,
happygranny
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by happygranny: This board is full of lots of useful interesting information, and I am just now starting to post here.
I started Ketek 400 mgs 2 x day and Flagyl 500 mgs 2 x day on Nov 23rd.
It is interseting to read so many people having stomach problems because one of the 1st things I noticed is a huge reduction in acid reflux. I now only take pantaloc once in a while. I can now eat raw fruit and tomato dishes - haven't done that in a while.
After 3 months of these ABX my LLMD took me off Flagyl.
I did feel bloating which has gone now that I am off Flagyl.
Herxing big time in the first week and frequently since. Right now the pain is the worse part of my herxing symptoms. Really painful skin and muscles in my extremities. The last few days have been especially bad for pain and fatigue. I feel like my blood sugar is 0.
I have taken flucozonol and nystatin in pulses. Liver enzymes okay so far.
My pain med of choice has been tylenol 3, but now that the pain is so bad, I am not comfortable taking that much Tylenol 3s and today asked my GP for Neurontin. Hopefully this bad pain is herx-related and will settled down soon.
Because I have not tested positive for Lyme (Elisa test in Canada) and tested low for Ehlichiosis and Rocky Mtn, my GP is not convinced I have Lyme, and thinks my increased pain/fatigue is FMS and CFS related.
The LLMD doctor who gave me a clinical DX of Lyme in Nov is in BC and I live in Manitoba, so I don't see him as often as I should. His support is essential to my state of mind.
So, at this point I think Ketek is not hurting me, and although I have not had a lot of improvement in symptoms since starting the ABX in Nov, I am determined to keep at it for another month or so and re-evaluate at that time.
Thanks for being here,
happygranny
The reduction in acid reflux may be because the flagyl and ketek killed the bacteria that cause ulcers {Helicobacter}.
I know I no longer get heartburn after being on abx's for starting 5th year.
Only had heartburn on doxy you have to drink plenty of water when on abx's.
Posted by treepatrol (Member # 4117) on :
Iam off ketek and feel pretty good sofar
Posted by crazychris (Member # 7384) on :
I have been on Ketek for about a month. This is my third abx - and this one gave me one heck of a herx! I had 4 days where I was miserable. I have not had any belly problems with Ketek, but my hips and knees are still aching. NP says that I am still possibly herxing and that the Ketek really gets into the joints and goes after the buggers. Overall I am pleased with Ketek, I would like for the pain to stop, but I assume that the pain is equalling healing.
Posted by AZURE WISH (Member # 804) on :
Still on ketek.... still improving
- no side effects
Posted by mountainmoma (Member # 6503) on :
Ok, I finished another two week on round of KEtex last friday. Last wed they did a blood draw, and I just got a message from my daughter that the doctor called yesterday and my liver numbers are high.
Actually, they have been up-for me-since aug., but still in the proper range. I will have to call tomorrow to see what they are and what this means. All my daughter said was that the message was to go in weekly for blood draws, so I guess I go to the lab tomorrow.
I had already checked with my doctor and got agreement to take an ABX break while I did anticandida measures and started trying metal detox.
I guess I'll also do no diflucan. Not sure about what else might be bad for this.
Also, usually the insomnia and dreams go away when I stop the Ketex, but not this time.
Posted by mountainmoma (Member # 6503) on :
Up to see how every one else is doing. Liver numbers are AST 71 and ALT is 78, I called today.
Posted by luvswz (Member # 8782) on :
I am with Luv2Ride.
I took Ketek 800mg once a day with Ceftin 500mg twice a day for ONE month only. My intestinal lining was shredded immediately. With the addition of Plaquenil 200mg twice a day, my entire digestive system shut down...absolutely no appetite and could hardly force water into my mouth...for days. I also developed black tongue.
Upon removal of Ketek, eating returned to normal. Black tongue also disappeared after about 2 weeks. No longer observe intestinal lining coming out.
Ketek is too strong of an abx for me.
Posted by treepatrol (Member # 4117) on :
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 Posted by mountainmoma (Member # 6503) on :
My liver numbers went up more, to 95 after 1 week off. But, now as of last week, down to 25 again !! Yeah !
I am not presently on any medicines
Posted by lesley1954 (Member # 7626) on :
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?
Posted by lymednva (Member # 9098) on :
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! Posted by Dave6002 (Member # 9064) on :
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.
Posted by lucy96734 (Member # 8372) on :
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 Posted by mountainmoma (Member # 6503) on :
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.
Posted by dontlikeliver (Member # 4749) on :
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
Posted by mountainmoma (Member # 6503) on :
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.
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and those symptoms have not returned