I just finished 6 months of mepron/zith/art straight...no break. It seems like there is only marginal improvement...should I be expecting more at this stage? I have a very severe case of babs (microti). Here's what I'm currently on:
2x2tsp/day Mepron 500mg/day Zith 300mg/day Art 4000mg/day Amoxi (for lyme)
Supplements: Reishi Garlic Vitamin B Dandelion Tea Pau D'Arco Tea (known for malaria also) Hylands leg cramp plus Quinine
Any suggestions on how I achieve more improvement...seems a little stagnant.
My worst symptoms continues to be chest/abdominal muscle pain and tightness, night sweats, spinal pain between the shoulder blades.
Thanks and hope you all feel better!
Posted by docjen (Member # 7510) on :
Just my 2 cents....I have been in babs treatment for almost 10 months now, and still herxing. I was on mepron/zith for 3 months, and now have been on alinia/ketek for almost 7 months. I am still making progress, but not there yet. IMHO, my heavy load of babs has been much more challenging than lyme. It sounds like if you are still herxing, then you are making progress.
Good luck!
Posted by jwenny (Member # 8831) on :
Thanks Jen,
I remember corresponding w/ you when I first started babs treatment. Glad you are making good progress.
One thing I can say is it does feel like a herx. I always have this toxin feeling and my urine is especially dark in the morning. Correct me if I'm wrong, but these are signs of herx. However, I keep thinking that this feeling is going to end but continues week after week, month after month. Also, babs herxes are really nonstop it seems. I think I will be on the protocol for easily a year.
Best Wishes!
Posted by savebabe (Member # 9847) on :
I believe my new llmd added septra to give the babs a little kick.
Posted by groovy2 (Member # 6304) on :
Hi Jen
Babs is one tuff bug- Takes a long time to get better-
How long have you been sick?
Make sure you take mepron with greasy food like sausage hamburger bacon ect- the animal fat make the mepron get absorbed Much Much better
Also amazingly enough Tonic Water has Really helped me alot--
It has a small amount of Quinine in it- and seemed to work better than the Quinine pills I took for one month--
Tonic Water Tastes like Hello tho -- I drink 1 to 3 liters aday (Diet)
Hope this helps you--Jay--
Posted by seibertneurolyme (Member # 6416) on :
The 300mg of Art is that Artemsia herb or Artemesinin -- would need higher dose if it is regular Artemesia.
Also have read different theories about taking Art -- I think it is Dr K that says to take a break every 10 days I think.
Hubby took 300mg of Artmesinin for 15 months continuously -- don't think it did much good. There are other herbs which could help with Babesia -- might try Neem or Noni -- can't really suggest a dose.
Hope you can find something to help.
Bea Seibert
Posted by Health (Member # 6034) on :
This is what I would do.
DROP all supps except for probiotics and antibiotics and the medications for babesia for a month or 2 months, see if
this works, that the meds are more effective. What about artmessinin? I know Dr B says to take it, but could it interfere with the DRUGS?
What about Clindamycin and quinine? that may do the trick, if this combo does not work. I read some had this help them.
I dont know, just some thoughts. Could something you are taking be making the DRUGS not as effective? I had this happen so am now soooo very
cautious.
I found some supps interfered with my treatment. REALLY interfered.
I was very ill and needed ALL antibiotics, and when I was taking aome supps I found I needed antibiotics SOONER then when I was off supps.
One was olive leaf extract, it made the antibiotics less effective, I was on the biaxin and flagyl. I journal all symptoms daily have for
3 years while in lyme treatment.
Dandelion I read will cause medications to be excreted QUICKER.
I would do this what I wrote, see how you do. I am not a DR, but I have stopped some supps before and found antibiotics worked better.
My multi vitamin and mineral tablet seems to be fine, and my one vitamin C.
Try this, it would be a shame if some of your supps were causing the antibiotics to be less effective.
See how you do.
Trish
Posted by jwenny (Member # 8831) on :
Thanks savebabe, Jay, Bea & Trish!
You guys are all great!
I have considered adding in Septa, Bactrim, Clindamycin or Quinine...but a still a bit of a chicken about side effects. But this is definitely something I will discuss will my doc next appointment. I was thinking of changing my zith to clinda.
I am currently eating Mep w/ peanut butter. I was taking it with sausage and eggs every morning, then my cholesterol tested high...so went to peanut butter.
Also, I didn't know dandelion tea could potentially cause my meds to be excreted faster. maybe I need to cut back some along w/ the other supplement.
Oh, I'm taking artemisinin from nutricology. I've learned so much from everyone on this board.
Again many THANKS!
Posted by 5dana8 (Member # 7935) on :
Babs is a tough devil to beat.
If you do a search in the directory & look under liz28's past posts she seems to know alot about babs treatments & some alternative stuff which worked for her.
Hope you can feel better soon
Posted by Health (Member # 6034) on :
I just read in my herbal book, a good one, that it is not a good idea to use dandelion while on antibiotics.
You are on heavy treatment, and this COULD be making the antibiotics not reach peak levels in your system, this is what it said.
I would stop it completely for a month, this is what I would do.
I was on dandelion root tea before I found out I had lyme, I was using it along with other herbs to clean the liver and kidneys of mine. I was not on antibiotics. I was using the
dried root and boiled it and drank it twice daily along with other herbs I steeped for 2 months.
I was told to do this by a psychic medium, believe it or not! and it was extremely helpful.
I had previously cleaned my liver and kidneys with ND's a few times, but this therapy the psychic told me, just helped sooo much.
I did the dandelion and other herbs for about 2 months, and then they stopped helping because the liver and kidneys were clean.
I then went to a LLMD and went on antibiotics.
I then tried the dandelion again while on antibiotics and then read that it was not a good idea, so I stopped it.
Dont want to sound too harsh here, just to be extra cautious.
Trish
Posted by jwenny (Member # 8831) on :
Hi Trish,
Thanks for your post...you definitely convinced me and I will stop the dandelion tea for the forseeable future. Even before drinking the tea, my liver functions has always come back normal.
I have also seen Liz's posts and her success with primaquine/chloroquine. I mentioned it to my doc a few months ago but he wanted me to continue on the current meds for a little longer before determining if I needed to change or add something.
I'm not sure how long I have had babs...I think it can be anywhere from 2-5 years. At least that's when I noticed some of the symptoms at the time which I brushed it off as being from old age or allergies.
But really appreciate you researching all the herbal stuff!
Best Wishes and Hope you feel better!
Posted by hardynaka (Member # 8099) on :
I think I beat it!!!
No more symptoms for weeks!!
I don't know what worked and if it's gone for good, though.
- Riamet killed a lot (December), but relapsed after about 2-3 weeks later; - then started on artemisinin + turmeric + salt, if I remember well, with low dose art for about a month (around January); - pause 2 weeks, then tried the high art approach (it also hit a lot, but I felt symptoms coming back after 2 weeks). Somehow 2 weeks was the time babs took to come back again, but always came back a bit differntly (symptoms kept changing); - I tried art high doses for 3 days for about 2 more times back around February/March, but last time got a bad reaction (air hunger got out of control, and decided to stop taking artemisinin and andrographis together - supposedly too much herxing). - Then relapsed again with constant air hunger, but after all this, hot flashes were getting better, as well as night sweats, if I remember well. - in April/May, worked on killing parasites in the brain/ intestines, took amalgams out, started on allergy free diet seriously, but didn't attack babesia nor lyme aggressively just enough to keep on living (following advice from the naturopath); - late in May, started taking PC-Noni together with Buhner's herbs, and possibly artemisia annua whole herb (I can stand that better). The naturopath told me PC-Noni helps with cystic forms. Noni juice did nothing to me previously, but PC-Noni seemed very powerful, I started on very few drops (never took a dropperful). - in May/June, started using lyme/ babesia programs of the KMT parallel to lyme/ babesia treatment, only on herbs. Never stopped metal detoxing since April. - in the end of August, no more babesia was found by the naturopath (ART). No symptoms either, air hunger is now gone (knock on wood).
I guess that artemisinin, Riamet and everything I took before PC-Noni/KMT helped to lower the number of parasites but I kept relapsing. PC-Noni, the KMT, diet and possibly metal detox helped eliminating the rest? Just a guess.
Selma
Posted by docjen (Member # 7510) on :
Hi J! Me again. I would try to keep from getting too frustrated at this point because it sounds like you are still herxing and thus still making progress. Hang on to your current treatment as long as it is working. While quinine drugs and clindamycin are in the babs "arsenal," they are also probably drugs of last resort since the side effects can be risky (and docs would rather not take that risk for your sake and for their own). If you feel like you plateau, or stop responding to the current treatment, there are other less risky alternatives to try.
Just my thoughts....not medical advice. Good luck, and hang in there!
Posted by Jellybelly (Member # 7142) on :
There is a topic on the board right NOW which talks about heparin illiminating Babesia all on it's own. So not only would you have the benefits of fibrin removal for hypercoagulation which would give you better penetration of ALL meds, but then it works on the Babs too. Possibly without the toxic effects of the various ABX we are currently using.
Two birds with one stone, can you ask for anything more???
Hey, just did a quick look through Lymenet after a nice, relaxing break (yay!) and saw this.
Yes, so far the chloroquine/primaquine treatment has been working. I did have a major Lyme relapse after stopping maintenance abx, which have been downgraded from omnicef/ketek to omnicef/doxycycline. And so I threw in an extra four-day course of chloroquine, and then two weeks of primaquine, just to be on the safe side.
It's true that if LLMDs start prescribing chloroquine en masse, they will bring the World Health Organization down on their heads. But you guys are smart--you'll find a way to do this.
Lots of Lymenetters have taken primaquine, though many have used it in mepron or Valtrex combinations. But you don't read much about them because they disappear from the board. One recently wrote to say she was going on her honeymoon, because her sight was coming back after ten years of vision problems.
It is a VERY heavy drug, though. If you check it out, be warned, the only reason to put up with primaquine is there are no other drugs like it.
Try asking your LLMD if you can take two 15mg base tablets a week for 30 weeks. Take one in the morning, and one at night, then wait a week. That will keep your side effects down, you will get the exact same effect as taking one tablet a day for 2 weeks, and it will not be waving a giant red flag under your pharmacist's nose. Your pharmacist has already sold you six months' worth of mepron already, so why not just tack this on for the next six months. And it should cost you about $2 a week. Who could argue with that?
Since primaquine is a travel drug, you may also be able to purchase it from a travel doctor. They are much cheaper than LLMDs, so feel free to shop around
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