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.

[This message has been edited by minoucat (edited 13 April 2005).]
 

Yes, the fatigue can be brutal. Speaking of which...I need to hit the hay. Let's pick it up in the am.
 

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

I will say that the fatigue has improved after the 2nd month of Mepron, but I had to step down to Malarone last winter as the fog got very thick and I could barely function.
 

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.

Cathy
 

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:

Is it possible to get more frustrated? Or is there a frustration limit, and you just kind of hover there?
 

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!

Cindy
 

,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!

[This message has been edited by DELT/1 (edited 17 June 2004).]
 

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.

education should never stop.
 

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.

There are a lot of references to it on the web. One is at http://www.chclibrary.org/micromed/00037660.html
 

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!!!!

Gail

 

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

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.

debbie from warwick.
 

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.

What happened to all the night owls, anyway? Here I sit with nothing between me and total isolation but old stomach pain war stories...
 

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.

Bc
 

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.

I do recal that my LLMD said that BIaxin & Zithro can be harsh on the tummy. He suggested upping the acidophilus which consequently upped my bathroom visits and magazine reading.
 

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.

Corgilla
 

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 definately got more frustrated having to repeat this protocal... I have broke down crying a couple of times on real bad days and my poor husband had to console me.
Stacey
 

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?

That's my nightmare, of course. I'm responding very well to mepron/zith, finally, but my husband's improvements are fairly marginal. We're in the 12th week, approximately. I don't know what to do, other than finish out this course and do the FISH test.
 

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.

good luck to you.
Sue
 

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

------------------

 

The first month I was on it I was a total zombie. Now I'm just really tired a lot (I think I'm somewhere in the middle of month 3) Does anyone have any info about Mepron and fatigue I could show her (I've already told her about all the posts) Thanks!
 

Mepron looks great on one of those synthetic neon Cahhhhvel Ice cream cakes! I think Cahhhvel collaborated on the color scheme for Mepron, or perhaps a 3nd grade art class?
 

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...

[This message has been edited by Lymelighter (edited 24 June 2004).]
 

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.

Best wishes
emma
 

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'm not being treated, but I did in fact have a PCR test for WA-1, through Igenex. Wasn't positive, but I'm still wondering.
 

I didn't know there was a WA-1 PCR. Found it on the IgeneX website after seeing your post. This gives me something to go on besides symptoms. Feeling a bit more cheerful.
 

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,

Corgilla
 

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.

It's taken us a month to diagnose and fix the problem, which is something my husband (the mechanic in the family) could have dealt with in half a day before he got so sick. But it seems like a wonderful omen. So many things have gone wrong over the last 18 months -- it's amazing how cheerful this one thing made us.
 

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,

Corgilla
 

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

------------------

 

I knew meprone was used for babs, but not Zithromax. I used that previously for Lyme and it trashed my guts at 250mg. I needed 600mg per day but just couldn't do it. I also did 3gm of amoxicillian with the Zith.

Is it the specific combo of Zith/meprone that works for babs, meaning that my past Zithromas didn't help babs?

Also, is your artemesinin 300 mg 2x day equal in someway to the wormwood tincture I'm taking?

Lastly, I hear people doing this treatment 6-8 months and they aren't sure if they got it or not. Are there no guarantees on babesia either?

Final last things...what tests are done for babesia?

Final, final thing...do we all get so sick from this treatment. I haven't heard this before. Sure, I've heard all the Lyme stories, but not for babs. Seems to be a lot of neuro at work, lots of gut involvement, vertigo, dizzyness, nausea, fibro stuff for some. Bad stuff that doesn't seem to stop. I never thought I would say this but it sounds worse that much of what I have gone through with Lyme.
 

Zith alone will not work on babs.

Artemisinin is a highly concentrated formulation of the known antimalarial (antibabesial) active ingrediant found in Sweet Wormwood (Artemisia annua). Artemesinin has 300 times the concentration of Qinghaosu than an equivalent amount of artemisia annua.

No guarantees. Artemisinin seems to greatly increase the kill rate. Our LLMD thinks 6 mo min, probably longer for long-term cases. There are other tx options -- Riamet, a European drug, and Lariam, which is nasty. And others.

Igenex has several tests -- see their page at http://www.igenex.com. FISH is said to be the most sensitive, but is still considered experimental and insurance won't pay. PCR is the most definitive, but you're pretty lucky to actually find a babs fragment. Our insurance (Premera) only paid $49 of a combined LD/babs $300 test, anyway.

Depends. I felt truly lousy the first three months, then much better. A lot of people have a very hard time with zith -- I didn't this time, although I have before. I think I may have killed off enough Bb that there wasnt the dieoff in the GI tract that I had before.

After the first 2.5 months of tx, I started taking several supplements that I have never used altogether before -- NAC, very low dose (5 mg) cortef, niacinamide, mg, plus EDTA for heavy metals chelation. They really seem to be helping.

It gave me insta headache and vertigo, and made me very anxious. Lets not forget that this morning, I still have vertigo and feel very odd in my head. Ah and tons of muscle pain and muscle fatigue.

Welp, gotta do what I gotta do.

The petechia- I have those also. Mine started ten years ago when I was in the ER for "panic attacks" . There was a whole rash of them on my elbow all connected together.

ER doc told me it was from bathing too hot.

Over the years (and before becoming sick with neuro crap) I would start to get this really odd bright kinda dark red freckles that would come up.

I have them all over the place now. They are not *together* just one here and one there, but I have always wondered what they were- and kept thinking *oh, from taking hot baths*

I want to find that ER doc and donate blood to him.

If petechia is babs, and I have babs, I have had it since I was 17 ( now 27) oh how easy that will be to treat.

By the way, this mepron is making me MEAN. Still love all you though.

 

Mean is the word. It does go away, but it gets pretty bad.

I've been through several LD "cures" and relapses; finally, after almost 4 mo. on the babs tx I feel significantly different (and better) than I ever have before.

I'm still battling the fatigue and some fog, but since I started the cortef etc. even that has been much better. I'm motivation impaired --I don't know how to describe it, but it seems almost impossible for me to get started doing anything, even though physically I'm perfectly capable. Very annoying.
 

Yep, I have to go up to two tsp per day this month. (sometime) ;o)

Every abx (or mepron) that I take has a habit of nailing the crap out of my neuro symptoms, so Im taking it slow.

About motivation. What is this symptom:

I can sit around all darn day and feel pretty good , even almost normal, but if I get up to do anything, say walk up a few blocks or walk around for long hauls in a store,

I get REALLY sick with headache, neckache and vertigo.

Does my lyme/babs really know when Im up versus just sitting down? Its very frustrating! If I could kick the enivitable

cant get around crap, I think I would be doing at least 90 percent better and not 60.

It may be vascular in nature, I dont know.... but im just intolerant to getting up and around.

SUCKS!

Glad to hear this all passes./ Thats what im hanging in there for.

The dizzyiness from it isnt fun. I had that as a major symptom for 5 months straight, so Im petrified of it.

Artemisinin is a highly concentrated formulation of the known antimalarial (antibabesial) active ingrediant found in Sweet Wormwood (Artemisia annua). Artemesinin has 300 times the concentration of Qinghaosu than an equivalent amount of artemisia annua.

So if I am getting very sick from a single dose of 36mg of simple wormwood, taking ten times the mg of something that is 300 times the concentration of what I'm taking sounds suicidal. Or is my foggy math incorrect?
 

I know EXACTLY what you mean about feeling ok while sitting and doing nothing.

Then, if i go to the store, i start feeling crappy and fatigue.

I showed my shrink my symptom book that i keep for my LLMD. He saw that i wrote fatigue down a lot.

He had me try Provigil to help my fatigue. I also have ADD. Anyway, it helped SO MUCH!! It gave me some energy and actually put me in a good mood.

I only use it when i know im not herxing. Because, if im feeling sick, i dont need to go around and wear myself out. I know i need to rest, stay home, and drink a lot of water.

Hope everyone is having an OK day!!

Jordan

------------------

 

I had a couple of times of being off abx for 4-5 days and feeling great. Mepron still makes me very tired; or else it's the bicillin. One more month on Mepron/zith/artemesinin, then I'm done for babs. My husband will be treated for bart.
 

Hope everyone else is doing well...
 

I love my new LLMD, but he thought that two months would be enough to kill the babs. I know it takes at least four.

I had to add amoxicillin to the mix, for a possible dental infection.

I have been feeling terrible since i added the amoxi. Also, i have been taking diflucan 200mg to clear up some yeast.

Hows everyone doing?

Jordan

------------------

 

After 2 months on mepron, I lost my appetite -- not nausea, just never hungry. I tried to eat as much as possible, but still lost 17 pounds, which I cannot gain back on no matter how much I eat. Has this happened to others.

My LLMD told me to eat lots of fat with mepron in order to digest it. Supposedly, the body cannot absorp mepron, unless it is attached to fat.

I lost lots of weight too. I now have my appetite back.

Bc
 

Do you re-test? There doesnt seem to be a rule of thumb to go by.

My LLMD wants me to do IV (for neuro lyme) after the mepron. I really dont want to do this.

I know i will need to do the flagyl/zithro.

Have any of you tried the tinidazole?

Jordan

------------------

 

I dug down and found this one again.

Jordon asked if I take the Ceftin with the Mepron/Zith. Yes, I'm taking Mepron 1 tsp 2 x's a day, Zithromax 600mg 1 x a day, Ceftin 500mg 2 x's a day, Prevacid 30 mg 2 x's a day, artemisinin (Nutrocology) 100mg 3 x's a day.

Boy of boy. The Ceftin has added a new dimension to the mix. I'm definitely herxing a lot. I was feeling really good right before I started it. Now I've got muscle pain, stiffness, joint pain, headache, twitching, depression, frustration, sweats, confusion, tooth pain. I probably could come up with others that aren't as bothersome but are still there.

I'm trying to figure out if this is a good thing or a bad thing.

Here's something I just realized. Today is the start of my fourth four week period. Also, the 5th of August was terrible for me and that was 4 weeks ago.

It was good going back through and reading the old posts. It validated what I'm going through and made me realize that there is a reason my house is a mess.

I can really relate about the feeling fine sitting still. I went to WalMart a couple of weeks ago and part of the way through, I started feeling exhausted.

Also, I sit at work but still get really tired. It's very cold at work and I am very busy thinking about things. My chair is also a "sit up straight" type of chair. When I get home, I barely have energy to feed myself.

I wake up and can't even move but force myself anyway after an hour of thinking about it.

I'm still holding on to when I felt good and hoping to return there some day soon. That's once I've dealt with the Bart, HME and Lyme when (if) I'm done with Babs.

Oh, BTW, I'm probably going to be starting Prozac soon so I probably won't be so depressing next time. Hopefully I'll be coherent too.

Keep updating us on how you're doing. It's definitely interesting.

Corgilla
 

I'm on my fifth week of Mepron and Artemesia (and 7th week of Biaxin). The first week in August I felt really good for 3-4 days and went mad trying to catch up on all the stuff I can't usually do (seriously cleaning mostly).

But, apart from that short window of feeling good, I have been feeling unwell pretty much continuously. Not severely ill, but steadily just really unwell and malaised for lack of a better description.

I have a hard time putting my finger on what I feel. Some of the sx are familiar, others a bit different.

I feel a strange kind of tiredness quite a bit, more twitching and internal buzzing than I've had in a while. I get bouts of queasiness and nausea now, daily for the last couple of weeks, even though I eat a lot with the Mepron and take lots of fat with it also. The nausea can come on like 10 hours after I take it also - so it doesn't seem to be an immediate reaction to meds.

I have had on several occasions an old familiar awful "sick to the core" feeling, which is hard to describe. Kind of like I am about to collapse, coupled with an "I think I'm going to throw up" feeling but I never do. It's a feeling of my body trying to expel something from the very core of me - does that make ANY sense?

One year I had this for a couple of months on and off and I ended up so sick in the hospital they thought I had yellow fever or similar. I do now wonder whether it was Babs or Lyme or both doing this. I was vomiting (anything, even water), 104F, weak, sore throat, swollen glands, etc. The feeling I have now is milder, but there is a hint of thatsame feeling - which SCARES me. I am not sure if the abx are bringing this old familiar awful feeling, or the Mepron.

I've had a couple of episodes of a really sore throat with swollen glands in the last month - again, something I haven't had for a couple of years.

I still have nightsweats, on and off off-balance feeling, like I'm walking on a waterbed, on/off blurred vision and generally feel just "off".

Now I also wanted to ask other Mepron users - are you avoiding Zinc? It was brought to my attention that taking Zinc is contraindicated with Mepron. My multivitamin has Zinc in it and I am not sure I am suffering ill effects (unless that's why I feel ill most of the time).

Or is the Zinc problem that it stops the Mepron working?

Does anyone know? There were a few other substances which were contraindicated with Mepron, but I can't find them now. (supplements mostly I think).

DLL
 

CoQ10 is contraindicated with Mepron. I haven't found any other supplements that were specifically contraindicated with it, including zinc. Zinc and mag, and electolytes in general, are often contraindicated with other oral abx because they interfere with absorption.

I'm sorry to hear you feel so lousy. I felt pretty terrible the first 3 months of Mepron; not sure if it's the same thing you're experiencing.

Common adverse effects of mepron:
Nausea or vomiting. Small frequent meals, frequent mouth care, sucking hard candy, or chewing gum may help.
Headache. Mild pain medicine may help.
Rash.
Inability to sleep.
Fever.
Diarrhea.
Cough.

Best of luck to you.

 

Do you know if the Iron is also bad to take with Artemesia then?

I wish my LLMD would have given some indication of these things than me being weeks into it and finding out that I need to avoid other stuff than CoQ10 with it (that one I did know about). Even the instruction/information slip that came with the Mepron doesn't say anything about any contraindications, and the Clarithromycin box does not mention it either.

Anyway - Thanks Minoucat.
 

You have pretty much summed up how I feel on Mepron. I felt the dizzyness, nausea, blurred vision, general bad feeling before taking Mepron as well. My first few days on Mepron I felt almost human - no brain fog, no dizzyness, I could drive. After a while the generally unwell feelings that you describe came back.

I have been on Mepron steadily for 6 months now. Each month the herxes seem to be lessening in severity. Also, the fevers have gone away. I still have an underlying feeling of being ill, mostly like nauseas from a really rocky boat ride.

I was taking Artemisinin (low dose) with the Mepron for 5 months. I took a break because I read that you should take a break from Art. The night sweats returned. So, after a one month break my MD added the Art. back into the mix.

I will say that I do get several days in a row now that I can function really well. Naturally, I overdo it on the good days. So, I am sticking with the Mepron because I see glimpses of relief. My Dr. says it takes a long time with Mepron. He also said, "You feel lousy off the Mepron and you feel lousy on the Mepron so, let's stay with it since there are signs of it working". He has a point. If I'm going to feel crummy, I might as well endure the crummy feeling while doing something to fight the bugs.

Are you also taking a macrolide? I took Zithromax for 5 months with the Mepron. My Dr. and I decided to stop the Zith because it was destroying my GI system. I think much of the crummy feeling was from that. Contrary to the animal studies that say otherwise, I am improving on the Mepron sans a macrolide. I must be in that 20% group.

I am on Bicillin IM as well.

Sorry this is so long winded. I just wanted to let you know that you are not alone in the way you are feeling on Mepron. You have described my symptoms to a tee. Hang in there. I think it will get better.

Bc
 

I'm partly into my 5th month, and feeling better and better. Still tired, but not as bad, brainfog hugely reduced, not irritable, hardly any headache. The insomnia is relentless on the mepon, though.

The hubby is still feeling fairly low, but he's definitely much better. Headaches still bad for him, fatigue is still pretty intense, still achey -- but I see such a big change in his clear-headedness (much improved) and he's pretty much back to his old sweet self personality wise.

Because he's been physically still pretty miserable, I saw the positive changes in him before he did. So check in with whomever knows you best -- they might see improvements that you don't notice.

We're also on zith, art, and bicillin, too. He's starting bartonella tx, which is a little scary, but I do so hope it's the final piece of the puzzle. Or at least that it will bring things to a manageable point. Imagine having a life again.
 

Is your husband going to continue the Mepron/Zith and then add in Cipro or Levaquin for Bart?

That might be a good next-step for me as well. Just wondering if that's a feasible option.

If not, is he going to stop the Mepron/Zith and start some other tx?

It sounds like we're all having somewhat similar reactions with Mepron.

I think I'm going to ask to be switched to Biaxin instead of Zith when I see my LLMD. I think the Zith is causing a lot of my troubles. I do pretty well on Biaxin.

Also, I posted about trying prozac for depression. I'm actually going to hold off on that and try SAM-e first. It sounds like it might be a better option.

Good luck everyone,

Corgilla
 

Just saw the dr. last week and finishing my 6th bottle of mepron w/ the zith, ceftin and artemisinin. Mepron didn't effect me as much as adding in the Ceftin in May and then in July when my zithromax went from 600mg. once a day to 500mg 2x a day...HOLY COW!! I had a 10 day herx, the worst since starting in March/April. Now I've gone back to only 500 a day, my ears were ringing terribly.

Dr. recommended 6-8 months of babs treatment. After finishing Mepron I will continue zith and ceftin for 14 days, and then switch to ceftin, minocyn, and continue artemisinin. If I crash when going off mepron and zith I'm to call immediately.

I have now lost 16 lbs. The first 10 went really quick. But I just lost 5 more since July and I have no idea...doing the Atkins diet and all but I eat as much as I can. Don't have energy to do anything after getting home from work....Insomnia still a MAJOR ISSUE....Overall pain is all but gone except when I herx then it returns.

Husband just diagnosed with lyme and being tested for co-infections. He does not appear to have babs, but we'll see.

Take care!!

Gail

 

I read through most of thread here, and I can't figure out if the severe reactions many of you talk about is due to the drugs or if its due to Babs die off (or Bb die off)?

I also read the Artemesia can be added for efficiency. I understand it's a "over-the-counter" drug. My LLMD again did not mention this drug. Should I take it?

Michael
 

It is always hard to tell the response to abx from die-off reactions. For me, I'm very sure that the diarrhea and some of the fatigue and insomnia are mostly to do with the mepron; everything else-- the headaches, anger, etc -- are from babesia and LD die off.

Corgilla, he's adding the levaquin in, but dropping the plaquenil. I'm actually very worried about the levaquin itself, and uncomfortable with the number of abx he's taking at one time. So far, OK. Been doing some liver flushes and taking glucosamine/chondroitin -- dunno if it will help at all re the Levaquin.

 

Trout

VERY interested in your protocol the minou...hope hubby starts to feel better.
 

Saw my LLMD last week.

I complained about Zithromax getting to my stomach and settled for a rx for 1 250mg zith twice a day instead of 1 600mg once a day.

Picked up the script. When I got home, found out they will only allow 8 pills at $20 per filling. That's $20 every 4 days!

I've been getting 30 600mg zithromax for $20 for 3 refills so far.

I have one more refill on my 600's. I hope they don't pull the same thing with that rx.

In the meantime, I have 2 more bottles of Mepron to go and I'm supposed to continue taking zith beyond finishing the mepron.

I'll see how the filling of my zith script ends up. I might have to change over to Biaxin.

The next thing we will treat is my Ehrlichia.

My herxing has been much more frequent these days. I'll have a 6-10 day neuro herx then have a couple of days off and slide right in to a 6-10 day physical herx. A short time after that, severe fatigue sets in for 4-6 days.

The cure really does seem worse than the cause a lot of the time.

I've added SAM-e in to my daily dosing. We'll see what happens when the next neuro stuff starts (or maybe it won't - fingers crossed).

I hope to heck I can be a normal person again sometime. I hope to heck that we can ALL go back to being our normal selves sometime soon.

Best Wishes,

Corgilla

[This message has been edited by Corgilla (edited 17 September 2004).]
 

I just added the extra third dose for the first time today and I don't know if it's co-incidence but I am now sooooo tired I feel like I'm in a half-dream state.

DLL
 

I just finished Mepron today, been on it since July.

DLL
 

quote:

---

Originally posted by dontlikeliver:
How is are all the Mepron buddies, old and new, doing?

I just finished Mepron today, been on it since July.

DLL

---

long haul... hope you found it helpful!
 

Still have 2 or 3 questionable days per week but, am able to work about 6 hours each day.

Bc
 

Hubby finished his mepron/zith/art tx the first week in January 2005, after 10 months. Doing well, but had sweats last night -- not sure if it was a babs sweat or not. Has me a little worried. He's still taking art, and is about to go on the same regimen as me for "final" (I hope I hope) bug mop up.

We're both exercising daily now, and a lot more active (when the tinidazole isn't knocking me out) and clear headed. It's wonderful not to be nauseous after physical exertion. I hope to be back at work very soon.
 

It has kind of killed my appetite, but not due to nausea, thank goodness. So I am taking it as a blessing and hoping I lose some more weight. Between this and my steady low carb drop, I may see my goal weight again.

I'm almost afraid to hope, but my headaches have been very subdued, and I've even been able to lower the dose of my pain meds. Yeah!!!

Oh, and I'm another seronegative Babesia treater who is finally seeing some improvement after going after the Babesia. So glad to hear that it sounds worth doing.

------------------
Sonoma County Lyme Support
[email protected]
 

I did tell my LLMD my nightsweats were worse at my last visit and he said to just take 3 more months at an increased dose and then stop - so that's what I've done.

Another thing I don't seem to get (fingers crossed) anymore is the feeling of my lungs being hot and inflamed, sometimes with cough.

DLL
 

It's really depressing to read how bad everyone feels on mepron. The killer is that it takes forever without much improvement.

Constant fatigue and weight loss, poor appetite, increased night sweats, insomnia, rashes, and other sx.

Has anyone in these posts actually gotten rid of babs using mepron in a reasonable amount of time?

I read also that milk thistle reduces the effectiveness of mepron. This might be part of the problem for some people, as well as other supplements. There are probably even some people that didn't know about not taking Q 10 with it