For me: I just quit mepron/zith after the 6 th month. Still taking the bicillin 1.2 IU 2x week (doing it all on the same day, now). Restarting artemesinin next week, just for just-in-case mop up. Babesia sx seem to be completely gone, so far. Crashes from the Bicillin are significantly less - I'm only completely down for the day following the shots.

When I do stuff, I have a lot more energy and do much more without feeling sick. However, I'm still very very very tired much of the time, which is enormously frustrating. I've been doing ALA/chlorella/niacinamide/EDTA for metals detox; I don't know if that's contributing to the fatigue. Also getting the stuff together to rig my own ozone sauna for myself and hte hubby, who's pretty sore.

My husband is continuing his mepron tx, and added in levaquin for bartonella. 17 days left on the levaquin. So far so good, definitely clearer mentally. Pain seems to be in the muscles, moving around in his body and gradually reducing, so I'm thinking (praying) that it's die off and not quinolone damage.

We're both continuing with liver flushes about 2 times a month, and CSM.

I'm planning to go back to work next month. I hope I can do something about the fatigue by then. The brain fog has mostly lifted, but I get a lot stupider when I get tired.

Went to see the movie Hero yesterday. Way cool. Everybody dies (many times) but visually, it's the most beautiful movie I've ever seen. And I could follow the whole plot, despite all the different POVs and subtitles! Wow, amazing! I know I'm getting better!

I don't think it is the Mepron because an increase in symptoms started before taking it.

I can honestly say - I don't feel any different (same and POSSIBLY worse generally). I was hoping that after the third bottle suddenly things would change, but they haven't yet.

I have MORE nightsweats than ever, am as fatigued as ever. Even where I used to have days where the fatigue was better, I don't seem to have them now, just the same every day feeling of being puffed out from not much at all.

One thing that's different is that I caught a cold 3 weeks ago for the first time in at last 2-3 years. And, today I'm starting another one. I know they're not herxes because I've caught the colds from my daughter. But, I guess this is a good thing, catching colds (???).

If I don't start to see a difference soon on the Mepron (and Biaxin which I've also been on since beginning of July) - I think I'm going to start to worry why nothing's really changing.

I continue to see slow but steady improvement on the Mepron. Oh, I did about 2 months of Artemisinin also. I am taking a one month break from that, as recommended by the Art. manufacturer.

Most of the brain fog is gone, as are the fevers and sweats. But, I am massively fatigued at times. My MD has decided to keep me on the Mepron with Art. added back in until I start to gain more energy (less fatigue).

8 months seems like a long time but, I am seeing improvement. The Bicillin herxes are still pretty steady starting at 28 hours after (2) 1.2 shots and lasting for 3 days.

I do now have functional days and am able to work a full day without a nap. I start to crash around 4PM.

I have been taking 100mg of Allergy Research Artemisinin 3 times a day for the last month. My Dr.s didn't know much about the art and I took it on my own.

I think I read on Lymenet here that this was a good dosage. I tolerate it ok. Can anyone confirm or recommend a dosage? How long should one continue to take the Artemisinin?

It has been slow progress but the fatigue is definately not as bad as it used to be.

Dr. S wants me to go at least another 3 rounds on the Mepron. I think Dr. H would have said the same.

The only problem I seem to have with mepron is that it gives me an occassional rash and itching. Also, occassional sore pimples on my back or chest. Did not have this before the Mepron.

I'm not sure if it is getting the babesia, lyme, or both. But I am improving.

BW

[This message has been edited by BW Houston (edited 17 October 2004).]

[This message has been edited by BW Houston (edited 17 October 2004).]

I still have slight symptoms when I do my one week off... I also take arteminisin by allergy research. This is my second treatment for babs the first one being 5 months. I am back to where I felt last year when I stopped treatment so will go longer this round. I am much more active now and enjoying life more.

Mino,
Your hubby sounds like me with the Bartonella as I just did a couple of weeks of levaquin too trying to knock the bart back a bit. It did help...

My doctor told me that if the top of my hands hurt, above knees or the Achilles tendon area hurt to stop taking levaquin right away. Luckily this never happened although it did make me very sore but hey I can deal with that since it helps.

Do the liver flushes help? I have been meaning to try that but have not done it yet.

I was very worried about getting a puppy too and we definately made the right decision like you. He got me off my butt and moving around. He now weighs 125 lbs and is hell on wheels.

He is the only healthy one in our household and runs circles around my husband and our lymie/bart dogs. He makes us laugh a lot although drives me crazy when he barks at the television.

He goes crazy when he see the cartoon characters, animals or weird scenes and even
knows the sound of the toe nail fungus commercial. The one with the little yellow characters. He can be in a different room and hears that commercial and comes tearing into the living room to watch it.

Too All of you:
I hope everyone continues to feel better and beats this very soon. Hang in there we will all look back on this one day.
Stacey

And I would say that overall I feel worse.

Here's the new symptoms since starting on Mepron:
- Constant headache.
- Cold sweating.
- Morning temperature swings to 93-94F.
- Cloudy/dark urine.
- Itchy and watery eyes.
- Sinusitis.
- Some chills.

Symptoms that have improved a little bit include:
- Fainting fits.
- Heart pumping and stings.
- Energy level.

Symptoms that are unchanged:
- Numbness.
- Dizzyness.
- Brain fog.
- Short term memory.
- Tiredness.
- Shortness of breath.

So, I don't know if these new symptoms are herxes, sideeffect of Mepron or if I'm getting worse.

All I know is that these new symptoms started to appear roughly 1 week after starting on Mepron.

Btw, I've never had a positive test for Babesia. I know this is not unusual; just letting you know.

Seems like, from many of the above postings, that many of you don't see improvement until after many months of Mepron. This normal?

Michael

[This message has been edited by cmichaelo (edited 18 October 2004).]

Where's all the folks on Mepron?

I had to stop my mepron/zithro treatment because i had to add different ABX to take care of a dental condition.

I ended up being on an IV of Invanz for a month which finally cleared up my problem.

I have decided not to go back on ABX at this time.

My fevers were getting better and the fatigue was also getting better on the mepron. However, i now have to deal with the yeast and i also want to heal my gut.

I bought a rife machine and i have been using it for the last week.

Its actually great. If i feel like im getting a afternoon fever i rife for babs. After my session, i feel SO much better.

I feel much stronger off of the ABX. I actually started to work out a little these last few days.

I ran frequencies for lyme for the first time on Sunday and herxed an hour later.

So, i know rife works. I know its a bit controversial, but it is something im trying.

I just wanted to give an update on my babs/lyme fight.

Jordan

I just finished my 6th and last bottle of Mepron.

I also found that it wasn't running out in the amount of time it seemed it should have.

After I bought a new measuring spoon set made of metal, I found out why.

A level teaspoon is not 5ml. It is 4.93ml. You need to add a glop or 2 more to a level teaspoon to get the right amount.

Doing it this way made my bottles last the amount of time they should.

How am I doing? I was great after starting the tx. Now I seem to be back to my usual constant low level.

I had some big herxes in August and September. After that, I started back with the feeling that I'm constantly having a low level herx all the time.

My sweats seem to be gone. I've got a lot of twitching, itching, bugs crawling on me feelings. Swatted at my right ankle about 20 times last night and today.

Have had week-long headaches. Also backache, tearing eyes, stuffy nose, muscle stiffness, joint pain/cracking.

I've wondered to myself if my Lyme/Bart/Ehlichia may be in need of some attention. I think the Ceftin was hitting the Lyme some.

I'm to continue my Zithromax 600mg, Ceftin 500 mg bid, artemisinin 100 mg tid, and prevacid 30 mg bid.

My next LLMD appointment is 11/1. I believe the next thing we'll be working on is Ehrlichia.

I've taken 3 months of doxycycline and 9 months of tetracyline in the past so I don't know what we'll be using for the big E.

Lets hope we all can kick at least this one TBD.

Take care,

Corgilla

Got treated for months for babs. Finally had to stop the mepron because of the itching.

I seemed to do OK.

Took another teaspoon of mepron this am. My head is swimming again.

I tried to search the mepron posts to see if others felt worse on the drug also. Am not able to at this time.

I also stopped getting the....overheatedness for a short time at night. But, this symptom comes and goes so I don't know if it is because I stopped the mepron for a while or not.

Right now, I seem to do better without taking any drugs but am going to continue with the IV Rocephin until it is gone.

I am not sure what to do about the mepron. I talk to LLMD soon again.

Just hard to have a clear head and think clearly at this time....more than the usual lyme stuff.

Corgilla, I noted that you were supposed to see your LLMD on 11/1. How did that go?

I've now taken Biaxin for 4.5 months and Mepron for 4 months.

Apart from a few fantastic days about 1 week into the Mepron, I have pretty much felt like I'm either getting slightly worse, or am constantly having a low-level herx. And, I really generally don't know how to tell the difference, apart from on days when I get chills - then I know it's a herx - and from time to time I get a few days of that. But, even inbetween I have usually constant bad fatigue, feeling out of breath, patches of days when I feel like I'm a little itchy/ticky or like I'm getting bit by spiders.

Is that Mepron or not, I don't know.

One thing I have noticed in the last 3 weeks just about - is that my eyes look constantly glazed over and kind of cloudy, like I'm drunk (except I'm not). They are not yellow, which I know would be bad.

Is that a Mepron thing? A herx thing? A Lyme or Babs thing? I don't know but I know I didn't have eyes that looked like that on a daily basis before.

I have been having a LOT more nightsweats on Mepron. Before, they were occasional, now they seem to be the norm.

So, my conclusion so far is that I'm no better but tolerating it probably ok.

I had my appointment on 11/1 and was taken off of mepron, zithromax, prevacid and art and put on ketek 800 mg once a day. My ceftin remains the same (500 mg bid).

I think the creepy crawly feelings come from mepron.

I noticed toward the end of mepron/zith that my eyes looked extremely tired with dark circles. I've always been one who looks fine in the morning when I wake up. Not while taking those. I looked really tired. It's the first time I actually looked the way I felt.

I had more night sweats and day chills/sweats while taking these also. They faded away at the end. I was on them for 6 months total with an extra 2 weeks of zith and art.

When you get the chills, is it shaking chills or you just can't get warm? I had a "can't get warm day yesterday." I'm pretty sure I'm herxing from ketek now so maybe I should mark that as a herx sx.

I think I plateaued after the fifth month. I was really looking forward to being done.

I've been posting on "ketek users please update" now.

I'm planning to start taking all of my supplements again. I stopped while taking mepron because of the antioxidant/coq10 warnings I heard about.

I have just about every tbd there is in this area so I'm not the greatest specimen for a baseline study of this treatment.

Hope for continued improvement,

Corgilla

I would say my chills are like I need to put on an extra sweater, no chattering teeth or anything like that. Just like when you get a bit of a fever.

I hope the Ketek will work for you. I have looked at that thread even though I am not taking Ketek.

It hadn't happened for a long time until yesterday after I took a tsp of mepron.

I was OK after I got in my down sleeping bag and became a couch potato.

I wonder now if it is because of the mepron...a herx?

Just wanted to bounce something off you all wrt to the treatment period for Babs microti.

My LLMD gave me several articles which demonstrated that a 2-week course of Mepron/Zith was enough to completely get rid of Babesia microti.

Though symptoms persisted until 6 weeks after end of treatment, but did eventually go away.

Don't have the articles in front of me right now. I'll supply if you're interested. The articles are about 4 years old I believe.

Which rife machine did you buy?

I am def going that route, but have not bought one yet. Will continue antibiotics and try Rife.

thanks,

(I'm from Westchester too btw)

I'm interested if you can find this study. I am going to see Dr. B. next week and it wouldn't hurt for me to see this study beforehand if possible.

BTW, do you mind sharing who the LLMD was who said this to you?

Thanks.

DLL

I am also on Bicillin but, have seen great improvement on that.

Will see my MD on Friday to decide about stopping the Mepron. I feel like I need a break from it. Did really well the first 4-6 months.

Did someone mention nightmares???? UGH! They are so bad on Mepron.

Symptoms on mepron are:
muscle twitching all over
small pimples breaking out on body
big hot flashes, hot sweaty head
every other day herxing
constant tickling feeling in stomach going away
vertigo no better, maybe worse
ear popping, tinnitus
pain in lower back

I just had a thought, and that is that I've read that there are many strains of Babs but unfortunately not many different tests.

So, perhaps B. Microti is treatable on short-course Mepron as your LLMD said (maybe not). But, it could also be that some/most/a few of us have another strain of Babs which is not so easily killed (???)

My LLMD seems to put people on it for at least 4 months, but know another patient who was on it a year (and improved).

Nightmares: yes I forgot to say that I, too, get horrendous dreams. I have had them for years without knowing I had Lyme, but recently they are worse and I seem to sleep like in a coma-like state.

Symptoms on mepron are:
muscle twitching all over
small pimples breaking out on body
big hot flashes, hot sweaty head
every other day herxing
constant tickling feeling in stomach going away
vertigo no better, maybe worse
ear popping, tinnitus
pain in lower back

I bought a GB-4000. Im using it to treat lyme, babs, ehrlichlia, parasites, candida and fungus.

I really herx from it.

I have started working out again a few days a week.

I still get low grade fevers off and on though. I wondering when i will EVER be over them. Other than that, im doing pretty well.

Jordan

quote:

---

Originally posted by dontlikeliver:
Michael,

(I'm from Westchester too btw)

I'm interested if you can find this study. I am going to see Dr. B. next week and it wouldn't hurt for me to see this study beforehand if possible.

BTW, do you mind sharing who the LLMD was who said this to you?

Thanks.

DLL

[This message has been edited by dontlikeliver (edited 17 November 2004).]

---

The first (and most recent and most interesting) article compares treatment of Babesia microti with Mepron/Zith and Clindamycin/Quinine:
P.J.Krause et al,
"Atovaquone and Azithromycin for the Treatment of Babesiosis",
New England J. of Medicine, p. 1454, Nov 16, 2000.

The next article describes the outcome of treating Babesia microti with Clindamycin/Quinine:
P.J.Krause et al,
"Persistent Parasitemia after Acute Babesiosis,"
New England J. of Medicine, p. 160, July 16, 1998.

The study seems quite well rounded. And if it's true the Babs microti only requires a few weeks of treatment, many of us must be infected with other strains of Babs and/or other coinfections/Lyme.

My LLMD is Dr.L of Armonk. He just gave me the articles to read. Said it would be good reading for me. And it was!

Michael

Lymiedad - how long has it taken you to feel better on the Mepron this time - and how long were you on it the first time around?

Not all Docs recommend taking a week off between rounds of Mepron. Mine, for instance, feels I will lose ground. I have been on it straight for 9 months. It depends on how sick you are and how you react to it.

THEN- 2 rounds 3 weeks on 1 week off.

I was able to fix myself breakfast this am, sit at the table and eat it, and took 1/2 teaspoon of mepron.

Shortly after, I had increased symptoms and my head was swimming. Hard to believe that mepron was the reason.

quote:

---

Originally posted by kam:
I am still not able to read most of the posts to see how others are doing.

I was able to fix myself breakfast this am, sit at the table and eat it, and took 1/2 teaspoon of mepron.

Shortly after, I had increased symptoms and my head was swimming. Hard to believe that mepron was the reason.

I am still trying to stabilize. I am planning on taking 1/2 teaspoon at bedtime tomorrow night to see if that helps.

---

Are you positively sure that it is the mepron?

You asked this question on an earlier occasion too I noticed?

I'm so sad that you feel as bad as you do.

What have you been diagnosed with?

Are you being treated for both Lyme and Babs?

Sorry for double post; lyme brain that I am. The ear screeching, (high pitched constant) a new development on mepron, is driving me nuts. Just when you think things can't get any worse.

Yup, ear ringing and sometimes painful. It doesn't last long and doesn't happen all that often. I mentioned it to me Dr. and he just shook his head like "Oh yeah this is a pretty normal side effect". That comes and goes.

For 3 weeks+ now I am more fatigued than my normal fatigued, plus even worse stamina than my normal low stamina. I have also been getting "waves" of feeling like I am going to collapse, where it just washes over me - even if I'm sitting down - and I momentarily start to sweat and feel weak, then it passes, and later returns, perhaps hours or a couple of days later.......on and off.

I have an on/off quivering in my intestines (not twitching) and my legs seem constantly weak and feel a bit shaky, but no real loss of strength I don't think, just perceived/feeling of.

Arms also tire much more easily and ache from minor activity (like carrying shopping, or cleaning sink.)

My tinnitus is also worse than before, and most of the time if I sit/lie down and close eyes there is mild vertigo. I have had vertigo in the past, but not been a problem for a while.

I also have the feeling on my skin of mild sunburn/chills. No temp at the moment though.

Could this be Mepron herx or not? I don't know how to interpret it really. Am I just getting worse? Or am I getting better and should be glad to feel worse?

When I go to bed at night my entire body buzzez worse than ever and so fatigued I can barely move my arms.

A confused,
DLL