So here's me:
I'm in my 10th week of mepron/zith (did the first 2 months at 3 weeks on, 1 week off; now going steady on it with no time off).

Dosage is 750 ml mepron 2x day, zithromax 600 mg 1x day, artemesinin 300 mg 2x day, plus acidopholus and other probiotics, plus bicillin 1.2 million units 2x week.

Same for the hubby.

I'm doing much better, and no longer having rages or obvious herxes, but I'm SO TIRED. It's awful. I do get a couple of good days -- three in a row a week ago -- but my standards for good are pretty low. Really, though, my head is much clearer and my moods are more stable. It's this bloody fatigue that's driving me insane. I did feel very good during one of the breaks, when I did a colon and liver cleanse; I'm hanging on to that thought.

Anyone else having this fatigue? Yeast doesn't seem to be it; I'm trying to figure out if it's babs die off, toxins, or abx fatigue.

My husband still feels pretty lousy. Fevers and chills are gone, but muscles and joints still ache, very tired, and headaches. So, bummer. He's not the bodycleansing fiend that I am; I think that may play a big role.

We weren't officially treated for bart, and haven't been dxd with it, but we did do protocols that should have taken care of it.

So my current plan is to do another 2 months of mepron/zith, then the FISH bloodwork; unless I get a FISH positive, I'm hanging up the abx and will cleanse the stuffings out of myself, and hope that's it.

PS, there are older mepron buddies links at http://flash.lymenet.org/ubb/Forum1/HTML/013823.html
and http://flash.lymenet.org/ubb/Forum1/HTML/023873.html

I couldn't find the original mepron buddies post.

Editing here almost 10 months after this post to add this: I stayed on this protocol for a full 7 months, and didn't do the FISH tests -- the benefits were so obvious after the 3rd month that I decided to trust the protocol. I've been off the Mepron for 4 months, and no babs sx. The hubby followed the mepron protocol with Levaquin, then Ketek, to address Bart, and we're still both on bicillin a year later. The bart tx seems to have worked well for the hubby. I didn't have major bart sx and ketek seems to have taken care of whatever I might have had.

I am 3 hours late for work everyday and do not get out of bed before 11:00 am on weekends and that is on a not so bad day.

I was on 5 months of mepron/zith/artemesinin and thought we got it but not the case. I resumed treatment in April and my LLMD will treat for at least 7 months or so this round and is thinking about another protocal soon.

I hope your progress is better than mine. I am not tring to upset or discourage anyone but some do have a hard time getting Babesia under control.

Make sure you are ready to stop when the time comes... I now understand my body/symptoms better and wish I had that insight before moving on to the Lyme/Bartonella meds in January.

I am feeling better but I still have a long way to go.
Stacey

Been on clindamycin, rocephlin and mepron now for 2 weeks and went to doctor today and have another month of this combo to go.

Then she said I will have a small break and start back on the mepron again for a month--heck I won't have any family left at this rate by then.

I know some people used Riamet for babs -- any follow up stories?

For people that thought they were done with babs and then had to redo tx -- did you do bloodwork to determine when to quit, get to the end of what your doc deemed was the appropriate course, or were you classically symptom free for 2 months?

Bel, how did you determine you had bart? Sx or bloodwork?

And finally, the really big question:

And I know there is something wrong with my circulation, even though everything checks out ok w/ cardiologist. Almost like I don't have enough blood volume, or I have venous circulation problems-- I get bad swelling/pitting edema in my anklse, relieved by elevating them. I went to have blood darwn this week, and neither of my arms worked, although they got in the vein. The blood bharely trickled out. Finally they got it out of my hand. i drive an hour to work, and when I get out of the car, the pooled blood in my legs rushes to my head, so bad that my hearing pulses.

My blood vessels and nerves seem to be easily compressable, sort of. i get almost neuropathy like pain in my feet when I have been sitting for a few minutes. i don't know if this is lyme or if I am just falling apart!

,i have been on many combos for the lyme, for two yrs, but none to treat this , it was an over sight,

the rest of my faimly got treated with it a year ago and i was the sickest, and didnt,

go figur , well any way,

now

I am really really sick for the first time herxes are at their worse,

i always had some tiredness,but never any improvements not any real changes just steady , only positive i did have was

i was able to talk and walk again that was great.

but know i havent moved from my bed in two weeks and before that it was forced everyday,
i dont work and if i did i would have too quit,

i have moods unbeleivable i dont want to talk to anyone,
muscles always twitching,headaches migrains, dizzyness,

im off balance again. i have had fevers on and off for the past month but they may be letting up.yea!

blood pressure up down heart rate up and down. anxity more than usual.

oh and im really forgetful again i even lost my wallet last week with all credit cards and licence.

i havent done that in three yrs, when i was always miplaceing everything.

oh and when i walk up stairs to us bathroom it feels like i was running a 10 mile run,

cant breath,
whats that i dont smoke,

just a month ago i was at least able to go to gym at least two times a week and walk fast treadmill for three miles each time with no problem?

I just dont know how to handle ths my fatigue is at its highest,
even with on every combo i was usually able to get in car and drive for a ride ,

not after last week, now dont go anywhere,

i feel just like i did before i starded meds,

thinking is stupid again,foggy confused,

you no like those cartoons when they get hit in the head and their eye balls are going in circles and the stars are flying all around their head.

thats me all the time.

its scaring me because dr h wasnt exspecting this to be as bad as it is,

but i think now that most of the symtoms that were always bothering me were these and these are the ones that never went away.
humm?
im never hungry anymore, i eat probotics all time for yeast, dont eat bread, sugar.
not yeast.
and one more thing

i get 5cc a day of glutithion, and if i miss a day i even get sicker, i tried twice, and by middle of day dizzyness was almost at vertigo level..bad .. i get it through iv picc line.
anyway.

boy for someone who does'nt talk to anyone i sure can babble on .

im sorry, ill shut up now.

i just hope this lets up soon ,

im will be looking for rubber room soon if not .
kids are home for vacation third year moms, sick!!!

DEBBIE FROM WARWICK
--where is lisa (LLA2) have"nt heard from her,
hopes shes fine?

HOLLA!

it really is amazing because when i first started this med change/ five weeks ago.

for the first time in two yrs my liver enzime went up, because of all so much kill,

but ever since started the glutithion daily, plus nac,

they went back down if anything that is good news,
because i thought i would have to stop meds just when we started to treat co infections, and that would of stunk.

if i go more than twelve hrs my herx gets so bad i start shaking, tremmors ,speech problems, and anxiety worse than usually, almost cant be in my own skin.

i really like delevery through picc line its not iv form its 5 cc glu 15 cc saleen solution syringe and push. 10 minutes

then i can feel the glutithion work. it feels like a rush and its hard to breath for a minute and some time it scares me like panic , but after about 15 minutes i am able to start to think again.

it will usually take about three to four hr if i let my symtoms get that bad .to start improving.

other than that on a daily dose in morning i feel nothing, the only way i would no if it it is working was if i stopped and got more sicker,
but i did that twice ,/

and im NOT doing IT again/

this is not cheap and it is real hard to be able to afford on one income. we pay about average of 500.00 dollars monthly
with three kids and me not working,
but if at all possible i hope i dont have to stop.

husbands mom helps alot with out her we would be crushed.
my mom /dad./sis/bro/bro/ could care less.

debbie from warwick

------------------
lyme diease coming to a family near you;;

staring the infamous spirochete;;

with special apperances by
coinfections.

Hey! Well, today i got to take the yellow paint. It actually wasnt too bad. It tasted like bubble gum. I had a rice cake with almond butter on it, which was actually quite good for my fat grams.

I talked with my LLMD and she still wants me to take the 1200zithro and mepron 3(teaspoons) three times a day. I dont know why she is so insistant about that dosage.

This morning after i took the mepron i got a severe tummy ache. It finally went away.

Do you get more diarreah or constipation with these drugs?

Its so scary trying new meds.

Jordan

Also, rice cake has a high glycemic factor; I get a little weak when I eat like that.

The hubby has started having diarrhea, which I believe is abx induced. Bulk foods also help with this, and he's started taking saccharomyces boulardii, which has a good record with controlling abx-induced diarrhea.

My problems, when I have them, are usually with constipation, so the bulk helps there, too. And I take psyllium husk.

I'm taking milk thistle, too, to try to protect my liver.

Debbie, you're doing a ton of abx. I'm not surprised you feel so awful; I hope it will get better soon. I'm back to having pretty good days again -- 3 in a row!

Cindy, the edema sounds scary. Do your kidneys check out OK? One of my LD friends had a terrible time with edema -- we could sit there and watch one of her ankles spontaneously start to swell.

Everyone needs to be aware of c.difficile overgrowth associated with abx use. Much like candida, it can cause severe illness, including fatigue, edema and colitis. We were treated for it and did much, much better after it was addressed.

The rice cake was made from brown rice. And i used it because i need something to put my almond butter on. Had to get my 10 grams of fat! Its crazy, i use to always buy low fat or fat free, now im searching for fat!

Im having some tofu (with 10 grams of fat) and some cauliflower for dinner, along with my mepron of course.

That should be substantial enough.

Lymelighter:

You crack me up. I have been taking some kind of colon cleanse products, i think they are by renew life. Seems to work pretty good and hopefully it gets rid of the toxins. Im also taking the milk thistle for my liver.

Jordan

I've reached week 15 of Mepron, Zithromax & Ceftin (added in wk 9), Artemisinin and Protonix(proton uptake inhibitor added in wk 9 also). It is kicking major butt....I've got enough energy that I was able to get back to work by week 6. Every 4th week is a guaranteed herx though....When the Ceftin got added to the mix, that kicked me tushy even harder!!!

Last week got a head cold and I herxed really badly...my energy went right down the tubes and pain was bad. Neck and shoulder are stil bad every afternoon & evening.

Keeping in line with no carbs/no sugar; had one minor yeast episode on my tongue and have not seen it back. I too like Minou am eating alot of fiber. I've had very little stomach trouble and when I did it was because I didn't have enough food it my stomach. I don't know if anyone else notices this, but boy as soon as the Artemisinin gets in there, within a 1/2 hour I'm cleansing my colon....Seems very regular deal with that & if I forget the art I'm not regular and will get constipated.

Doing an a.m. & p.m. liver detox w/ main ingredient being milk thistle plus lots of other wonderful herbs. I feel better detoxing. If I stop the liver detox I don't feel as well....Also found a better probiotic called Primal Defense.

I still have a long way to go but I hope the Babs are kicked by end of August....at least hoping for that.

Debbie from Warwick; gosh I hope you're feeling better soon...that's alot of herxing going on there!!!!

I dont have diarreah and im not constipated. Im just having huge gut pains.

I dont know if its the mepron or the zithromax. I took my zithro (600mg) around 10 am and my mepron around 12pm. The cramps started about 4pm. Scary.

Has anyone experienced something like this?

Jordan

Sorry to hear about your discomfort. I don't recall having this kind of GI distress w/Mepron. However, if it becomes too troublesome, you could always give the ole LLMD a page for advice.

I find a slice of Chale might mop up the acid, but stay away from that Matzoh(unless it's Bran or Metamucil brand)! Where do you think the expression "LET MY PEOPLE GO" came from? LOL!

You are probably getting abdominal pains from the mepron if you are taking it before you eat, not after. I did that once and figured thar was the problem. If my intake is not fatty enough, I eat some nuts. Solved that prolem. My main problem is major nausea, which is stopping me dead from getting anything done. The fatigue is terrible as always.

Tess

IM NOT DRIVING THOUGHSTILL TO DIZZY.

ACTUALLY HIT MY HEAD ON BOTH SIDE AT TWO DIFFERENT TIMES CAUSE OF DIZZYNESS,

im really a danger to myself.

its funny that some of us are getting stomach pains i thought i was getting ulser today, cause i was having stomach pains, and cramps.

are we on meds around the same length of time and is this part of die off .

maybe hopefully (i dont no just wishingi guess)

this is my end of fith week and always take with high fat food.

wasnt around meds and then i was having runey runs

uck, like i need to run anywhere i dont think my head can take anymore bangs

mood has been a little better, but that is about it, speech is a little iffy, word recal is getting bad again hope not for long people think im drunk, or crazy!!

hope everyone is doing better than me
still looking for lisa, any one hear from her, hope shes ok.

As near as we can tell, at least part of the problem was severe acid reflux. What worked for me (in addition to the stuff I mentioned above) was to drink my protein shake (yogurt etc.) throughout the day to keep my stomach slightly lined. My husband takes a proton pump ihnibitor (Aciphex now; was Prilosec) that helps enormously.

Hope it's something that simple for you.

Zithromax gives me HORRIBLE stomach cramps and the runs. I can only handle 200mg oral suspension a day. The oral suspension seems to be easier on the gut.

Switching to biaxin XL & adding Nexium seemed to make it more palatable to the GI system. I'm so ingrained to take Mepron w/fat of sorts that I've never tried it w/out food, and rightfully so.

Thanks for all the replies. Im not really sure why that happened. It actually felt like my old endometriosis pains. I had it on my intestines but it was removed in February.

Delt:

Im glad your mood is a little better. Im sending you a big hug!

Bc:

I dont think my problem is the zithromax. I dont seem to have any reaction to it. I upped my dose to 800mg yesterday and today im going for 1000mg. Hopefully i will get to the 1200mg my LLMD wants.

I think its the Mepron thats giving me the problem. Im only going to take that stuff 2 times a day. I dont think i can handle 3 times.

Thanks to everyone!

Jordan

I had to chime in even if I'm late. I usually am anyway.

So, I'll be finished 6 weeks of Mepron 1 tsp twice a day and 600 mg Zithromax once a day.

I was also prescribed Previcid which I've taken on and off and Artamisinin which I started once then stopped because it threw me to the floor and stood there laughing at me for 2 days.

Since then, I started Artamisinin again but only once a day for a little while. I had a much better response this time around and have gotten back to 2 a day.

I'm actually noticing some difference. I'm slowly moving away from my "4th week" herx. Still have brain fog, sore joints, tired muscles, some fatigue and some muscle twitching/cramping.

I want to ask a question. Is Mepron an antibiotic? Or in other words, can I take my probiotics around the same time as the Mepron? Anyone know?

I hope all of us long timers have found the core of our cure and when we finish this up we can get back to the good fight and start winning!

I hope we can keep this thread going.

I missed work again on Monday and slept until 9pm when my husband made me get up to eat dinner. Finally made it to work at 1pm on Tuesday and feel not so bad today.

It took me about 4 months to start feeling halfway decent on this protocal last year so hopefully I will get back to where I was in another month.

Minoucat, My LLMD diagnosed bart by symptoms and did not feel it was necessary to run additonal tests...

I was wondering the same thing about Mepron. If i could take my probiotics with it.

My daily schedule

I wake up around 7 take my acidophilus.

Go back to bed and when i get up take 600mg of zithromax.

Wait a couple hours take 1 teaspoon of
Mepron with lunch.

Then i try to take 200mg of zithromax before dinner.

Dinner: 1 teaspoon of Mepron

Bedtime: take more acidophilus

I have not herxed too bad so far. I have been taking the mepron for 6 days. I just feel my normal crappy self. But, my joint pain is still gone!!!!!!!!

I will investigate about the Mepron/acidophilus question. Unless, anyone else knows.

Oh, and i figured out i need to eat a larger meal when i take the mepron. My stomach thanks me. A large salad and a brown rice cake with almond butter seems to work like a charm.

Hope everyone is doing well.

Jordan

Lou, how did you determine you're still infected? Sx, or bloodwork?

Just like you said it kicked in about 2 hours after I took it. I'd be doubled over with waves of cramps at work.

My answer was to take it at night with a little food. I would time it so I knew that I had two hours to fall asleep. I never woke up with pain, just slept through it.

The mepron never bothered me, a little dizziness at the worst.

After coming off it, though, I was so foggy for about a month, almost couldn't work.

I don't know if anyone has any idea why that would happen because from what I've been reading most people feel much better after stopping the mepron.

there is me lying there while life goes on around me.

Now Dr. J's office had me do the mepron and clinda every other day for a week and now tomorrow I start back every day for a week. Then it is another month as far as I know for mepron--not sure because my coinfection tests are not back-but I have all the symptoms so they are treating me as such.

The fatigue is awful. I sleep most of the day away and I am in a catch 22 because I have fibro so I am so stiff and sore I cannto stand it. My pain level is at an all time high. My neck is stiff all the time.

I also have a time with the fatty food thing so you absorb it, my eating habits are such that I do not eat a lot of fat. I make it up as I go along-peanut butter toast, rice with lots and lots of butter. etc.

This is the first time I have been upright more than 5 minutes since the weekend. Cannot stay long-upper back is killing me from arthritis and previous c-spine fusion.

My body is litteraly wasting away to no muscles tone. I try to at least stretch even if it is in bed but it takes so much effort.

I find taking a shower requires too much effort. I have been depressed a lot so I sleep more to hide I think, also to hide from the pain.

It is hard with my two kids home from school ages 15 and 10--the 15 year old takes the bus to friends but the 10 year old is bored to tears everyone in neighborhood has seemed to disappear.

I am hoping for a better day so I can check out some day programs for him that we could afford, preverably eith transportation--I cannto be counted on for much these days except to sweat, sleep and gripe.

I try to keep griping to family at a minimum, which is easy becasue as soon as hubby comes home from work he takes kids out a few nights a week and most weekends they are gone all the time--makes it hard for me-I am here to fend for myself-but as much as a bit** I have been it is for the better.

Now terrible sinus and ear infection like symptoms on top of things--lovely this herxing thing.

I now know why all support groups for lyme in my area have disbanded-everyone is home herxing and can't make it!! LOL

Cathy

I do ok with one 600mg dose of zithro, but i cant take any more than that. I just cant. I have tried a few times to take an extra 200mg later in the day, but my body just cant handle it.

Cathy,

It is VERY hard for me also eat something fatty with the mepron.

I have finally started a little system that works.

I have a big salad in the afternoon, and follow it by a brown rice cake and almond butter.

Since, im a vegetarian, i bought some tofu that has a high fat content. So i have that 3 nights a week with either broccoli, cauliflower or brussel sprouts.

The nights i dont have the tofu, i have a rice cake/almond butter dessert or a handful of almonds.

I cant wait until i can quit the Mepron. But it has only been a weeks so i guess i have a long way to go.

I keep thinking that im going to gain so much weight from the extra fat, but so far, no problem. :-) I guess its because i have cut all my usual food out of my diet.

Take care,

Jordan

LOL!!! The color of the Mepron is so bizarre!! It tastes like bubblegum/gasoline to me. The taste is not too bad, but oy vey is it strange looking.

Oh, to eat a knish again or some warm fresh challah!! Yummy, or a hot NY pretzel around 4pm.

Larkspur:

I have read that if you take the Mepron with around 10grams of fat, it increases its absorbtion by 300%. Thats a pretty large number.

So, im going with the fat. I want to kick babs in the butt sooner rather than later. My body must be freaking with my new 20grams of fat a day!!! Maybe my hair will get thicker :-).

Im still waiting for the herx..... Nothing too bad so far.

Jordan

Bubble gum gasoline flavor, um, catchy, albeit not for the kiddies. Topical Dental anesthetics have more taste appeal than this swill. We should have a "worst facial grimace" contest after swallowing Mepron. Van Gogh would've cut his other ear off if he had to paint with this stuff let alone taste it.

Lark & Jordan, I also wonder about the grams of fat issue. I've had better results from Mepron when I snuck a Reeses's into the mix. The day my dreaded chest pain subsided, I ate Uno's pie w/Mepron for lunch & a Pu Pu platter for dinner. Bizzare, go figure? This diet has Angioplasty written all over it! Needless to say, I don't recommend this diet for the cholesterol conscience. Ah, food glorious food. My LLMD had the Rx say "take w/a "high fat meal." I asked him if a spoonful of ice cream or peanut butter would suffice and he seemed OK w/it. I was tempted to call the mfr and get their opinion.

I lost 45 lbs from when I was really sick, so the Mepron thang ain't so bad...

Time will tell if my chronic european strain of Babesia is under control.

I always ate 10 grams fat with the Mepron...stuff like yoghurt, nuts, cheese and biscuits, ice cream, avocados, bacon and eggs etc.

It did make me very tired after taking it especially at first and brought out my night sweats as well as giving me worse heart palpitations and waves of bad depression immediately afterwards.

I LOVE pizzaria uno. I wish i could start eating pizza again.

Emma:

Your also lucky you can eat ice cream and cheese!

I cant wait until i can eat normal food again.

I think it is very important to eat those 10g of fat.

I have been taking the Mepron for almost a week and im kinda bummed that i didnt get a major herx.

It seems like i have been taking it forever.

Have a great night.

Jordan

I can pretty much guarantee you that I've had babs since at least Oct '02 if not Oct '92 and I only tested equivocal once (2 months ago).

I think I'm going to request staying on this treatment for 6 months and see how I'm doing from there.

I'm in my 7th week of Mep/Zith/Art treatment and I'm feeling good!! It started last Saturday and has continued through today (Tuesday). I am so excited.

I've had 3 good spells in the last 2 years. I hope this one lasts at least a couple of weeks.

Thought a little good news would brighten the Mepron Buddies' day.

Hope we're all feeling better soon,

I dug a 2 foot hole and found the source of a major leak yesterday! We don't have to replumb everything after all, it was a foot valve on the outside anti-siphon fawcet that wasn't seating. I had thought we were facing a major, and expensive, fixit job that we weren't up to.

Im starting my 4th weeks of mepron/zithro and i think i FINALLY am herxing. I have horrible headache, awful fatigue, low grade fever, and im so tired. Yesterday i was getting some muscle pain.

A few days ago i thought i might be feeling like this from a tooth problem i was having. But that finally calmed down, and i still feel like major dodo.

Then i discovered this is my 4th weeks on my new meds.

I ordered some artemisinin from allergy research group and it should be here tomorrow.

My LLMD wanted me to take Lariam, but after reading about it, i have chosen not to try it.

So, if most people herx the 4th week, how long does it usually last? I know everyone is different.

Anyway, hope everyone is doing better than me!!

Take care,

Jordan

I've been having tooth pain around herx time as well. I wonder if that's something that happens somewhat often to people.

I had Ceftin added to my protocol after this week's visit to LLMD. Took first one Monday night, started herxing Wed morning.

I was feeling good since 6/26 up to that point. Felt really bad yesterday. Today I'm almost back to normal.

I found out that I'm supposed to be taking Artemisinin 3 times a day. I was only taking it 2 times a day.

Also found out that the prevacid (proton pump inhibitor) is to help zithromax tissue absorption. Got scolded for not taking it regularly.

The only bloodwork that was abnormal during the last 8 weeks is my Amylase is elevated. It was elevated prior to the Mepron and Zith therapy and it has remained elevated.

Just go more bloodwork done and now I've been prescribed fecals. That sounds like a bundle of fun.

That's it for now. I have questions about when to take what meds but I'll save that for later.

Hope everyone better and better,

I guess im just a chicken sometimes when it comes to medication. Im always nervous if i have to take something new.

Corgilla:

Wow, you sure did herx fast on Ceftin!! I havent tried that yet. Do you take it with your mepron/zithro?

I ordered the artemisinin, but its not here yet.

OY! Fecal samples. Yuck. My LLMD gave me some kind of test to do at home. I was supposed to send "the samples" in. I never did the test.

Last year i had a TON of GI tests because i was having rectal pain. It turned out to be endometriosis on my intestine.

I get my blood tested once a month. So far, so good.

Keep in touch! Have a great day.

Jordan

I am not encouraged by what I am reading however, sounds like eight weeks of Malarone/Zithromax might not have done the trick for me. Was hoping it was gone...

To those of you who had to do more than one round..
Were you all retested for Babesia, or how did you know for sure if it came back? What symptoms returned?

Hey! Where do you live in Florida? As you can see, im in Miami. I was curious who is your LLMD?

You can email me anytime.

Thanks,

Jordan