I thought I would start at 1/2 dose for 3 days and go to full dose then.

I AM NOT A DOCTOR BUT:
My LLMD suggests that I start one new drug at a time, so if there is a reaction we will know the culprit. Have you spoken with your doc about doing this?

I am not your MD but am a big fan of starting out slowly. My MD is not but he lets me do what I want now because I whine about the side effects of a diving head first into the pool without water feeling that I get from starting high doses of meds.

With your support I will stay at one zith and the mep and not go up for a few days. I heard the herx can come day 3, so next week could be a good time to increase the zith and adding artemisinin after that, if I am feeling ok.

Can you herx from heparin? I imagine I could since it helps get the abx in deeper.

I'm in this Neon Yellow Goo with Hot Pink Pill club (have you opened the bottle yet??) *grin* I've also been taking artemisia and recently forgot that I was supposed to take that on an empty stomach with some grapefruit juice but now I forget the source of my handwritten notes. I've been extra spacy...

Takes some getting used to. Thanks for the almond butter tip!

I'm a deep end jumper when it comes to this stuff although I'm a big baby if asked to literally jump into a pool or off a rope into the lake or something. Never had the nerve for that (not a strong swimmer but I will paddle around at my own speed and happily so)... but I digress.

My LLMD never talks the supplements since he wants to get a baseline reaction, even to several Lyme meds at once. Then he will remove one, switch, or back it down if things are too hard (they never have been to that point for me though, although I've herxed many times). He just smiles and says good, that says you're getting a reaction to the medication, this is good.

So, there's the other way of going at things which is peddle to the metal and backing down if conditions warrant.

Hmmm, these are some interesting analogies of how people approach life in general. Gives me some thinking to do

Any time you need this thread going, just post or send up a smoke signal - there's lots of us here to help. Am on my 6th week now.

Are you a patient of Dr. C?

I thought he prescribed Clindamycin/Quinine for Babesia. Have you tried that combo? I didn't know he prescribed artemisinin.

My kids (18 & 14) started IV on May 20th and are having extreme sweating again. They have an appointment with Dr. C on June 20th and I wanted to discuss retreating them for co-infections. So, I'm curious what he prescribes now.

(My kids have been ill for 6 years and have been treated by LLMD's for 4 years. My husband and I recently tested positive for Lyme, so they may have been born with it.)

It's too early to tell how the IV Claforan is working. Jordan does have improvement in some symptoms. (Both have tried many oral antibiotics.)

My symptoms are daily headaches, neck/shoulder pain, insomnia, sinus infections (or feels like sinus infections). I'm on Zithromax right now.

My husband's symptoms are headaches, shoulder pain, aches & pains and fatigue. He is on Ceftin right now.

My kids were diagnosed in August of 2001. They were treated by Dr. Jones for 3 years and have been treated by Dr. C for 1 year. They are hard to treat and we are hoping the IV with help.

They did the heparin (sublingual) treatment and it didn't help. They have hormone deficiencies and are being treated for them.

I think both have high intracranial pressure and that is one of the causes of the symptoms. Jordan had an angiogram/venogram done last week and his cerebral venous pressure is high.

If they get better on IV, I'll be sure to let everyone know!

I've been on the Meth/Zith for about 6 weeks now.

My LLMD really believes that slow & steady wins the race.

I take 1 zith a day --- but my starting dose was just 1 DROP of Mepron. After a couple of days, I upped it to 2 drops, then 3. And then...BAM! I was herxing like crazy!

So - I backed down to 2 drops - and then eventually went back up to 3 drops.

I then went to see my LLMD and he told me I was herxing too much - to take a 3 day abx vacation (I took 5 days -- I needed it!) and then to start back up with just 1 drop of the Mepron again.

I don't know how you guys/gals are taking teaspons of this liquid gold puke maker -- I really don't! I think I'd have to go to the hospital...and then they'd try to kill me like they always do --- so I'm just staying on that 1 drop for the next few weeks as my LLMD is on vacation out of the country.

It's weird - but I feel really good. I'm not used to this!

I'll be happy to be a buddy - but I'm not on the Artemisin (yet).

Blessings,

Yesterday I took 250 mg of zith and 2 tsps of mepron. Today I was very tired. Didn't even go to PT. I thought I read that people often herx on day...I forget. I had it yesterday, but like much of my memory, it's gone.

Biaxin is in the zith antibiotics family my LLMD told me.

I've been waiting for the herx. It's been 2 weeks that I started the mepron. I haven't had anything really major happen yet. Some people feel like they are dieing.

I just hope it's working..........

mt gal

What about meeeeeeeeeeeeeee?

Thanks for waiting gang! Geeze!

I will be joining ya'll real soon.. I think. Gotta see how the doxy does.. then back to the liquid gold.

Hey Mountain Girl...

OLIVE OIL? YULK!

Didn't they tell you? If you have to be on Mepron.. and since it costs so much and can give kick butt herxes...

We get to have the fatty meal of OUR choice to take with it!

Soooooooooooo...

Bacon in the morning..

Ice cream at night.

Yo ho Mepron. I think I LOVE you!

------------------
If you get the choice to sit it out or dance...

Maybe the olive oil makes more sense. I did buy some yoghurt covered raisins as a splurge. (crazy aren't I.) OK, scratch the almond butter.

This is day 3 on the combo and I woke up last night with my legs twitching. This is not a new sx, but I had noticed that it hadn't been happening. Feel some depression and fatigue creeping in, too.

Can't seem to find the original mepron buddies post, just redux. Very informative.

I go to the LLMD on the 11th. I wonder if he'll keep me on mepron? Or maybe I'll start to herx in his office......... Hee hee.

I know I know not funny.

I added artemisinin. A few sweats. Is this a HERX? Other than that I feel no difference. This is day 7.

My fevers/chills increased when I added Artimisinin into the mix. But, my MD and I didn't add art in until after I went through my first Mepron herx. I recall the Mepron herx being very intense and the art made it worse for a while.

I am off Mepron now but still on Artemisinin. I take it 3 weeks on, one off, as recommended by the manufacturer. I can always tell when I start it up again after a week off. I sweat.

I remember that I started to feel better within 4 days of starting Mepron. Then, about 3 weeks later I started to feel like I was on the Titanic. I don't have my symptom journal in front of me but, I think I went through Mepron hell for 2 straight months after the initial herx hit. I was rocking and rolling - not able to drive.

I think it was about the 3rd month that I got some really good days. By the 8th month I was back to jogging, cycling and swimming.

It took a while and, I had some pretty intense herxes (always at the full moon). But, I think it worked. Only been off since mid-April. So, we'll see how effective it was.

Hope this helps.

Jogging, cycling & swimming? How do you do that? I mean @#$% !! I'm afraid to even skip to my bathroom - afraid I might just drop dead from using too much energy!!

I'm assuming you've been on therapy for awhile and are feeling much better? I will remember this as a sign of hope that one day too I'll have enough ENERGY to jog, cycle & swim - altho I've actually never had the slightest desire to jog or cycle as it causes me to sweat. I don't like to sweat.

Of course, since I've got Babs I sweat all the @#$%ing time - even while sitting in front of this fan that I have to sit with blowing towards my laptop, as apparently it can't sweat - so it likes to overheat & shut off without warning. I digress.

Anyway, I don't have the energy or skills to swim very far - but I think, in light of this @#$% Texas heat, that I shall put my fat girl swimsuit on & go float on cool water for awhile!

And I still can't believe you guys/gals are taking TEASPOONS of the Mepron. You're stronger women/men than me. I'm still on 1 drop - but the herxing ain't bad - so I'm not complaining.

Blessings,

I should probably put into perspective my current athletic endeavors.

I used to cycle from 7 to 20 miles every morning before work in good weather. I could swim a mile. I hate running but could manage 3 miles. I also played tennis, montain climbed, etc.

Lyme Disease had me flat on the couch for at least a year. After 2-1/2 years of abx treatment I am now able to cycle 4 miles MAX., swim 10 laps, and jog 1.2 miles. That is it! And, I can only do one a day, if that. There are still many days that I cannot get off my arse to do a simple sit-up.

What kept me from completely falling apart was doing yoga throughout my treatment, even the worst of it. I would stretch through the pain and dizziness. I WAS an athlete. I am now the person no-one asks to cycle or run with. My teenage nephews are the only ones who tolerate my slow pace. They plug into their I-pods and endure & encourage.

Hey girl, you've got to sweat! Think of all that junk your body will expel. I know it isn't sexy but it looks good in those Nike ads. So, go for it.

I've taken it twice before with flagyl in between the 5 weeks of mepron/zith. I usually wait about 3-4 days after the m/z is gone to start the flagyl.

The first time I took the combo it took about a week then knocked me on my butt. I was slowly building up to 1 tsp. mepron twice a day and 1 zith.

I still have herxing when I start taking it but the results farther down the road are very promising. Every time I finish it I feel a little difference over all.

So a little difference over and over is adding to a lot in due time. I'm beginning to do a few things I couldn't do 9 months ago.

Just to sweep the house or clean the bathroom is something that I couldn't do but can now. I've taken tons of abx. over the course of 2 years.

I too believe in starting everything slowly as my LLMD recommends. When the herxing starts it doesn't seem as bad as throwing your whole body in shock (which I've done several times) with too much the first time around.

I hope this helps and encourages you to continue trying the combo and see what happens for you. Sometimes it takes a little at a time to realize we're improving even a tiny bit after every dose.

Be sure to take your nystatin too. Hope in the long run you can see this process is working for you. God bless you.

Reading that post gives me hope too!

Did you compete in triathlons too? The 3 sports combo made me think maybe you did?

I quit smoking almost 2 yrs ago and last December (a year after 2 non-lyme surgeries)finished my first sprint tri in good time within my age group.

Now I can barely swim a length at the pool, dont even DREAM of jogging and havent cycled since that day. Mostly due to nerve pain in the shoulder area. And fear that it will return if agitated.

How would you say your body adjusted? I mean, two things....first physically....did you gain a lot of weight? I have put on 10 pounds since the tri. It is incredibly depressing! I dont eat more, it is just when you go from being active to sedentary you gain weight and this is truly a huge obstacle for me. How did you deal with that?

Secondly, how did you deal with the emotional aspects of not being able to really move along like you used to? I am having a hard time being gentle with myself, although I will hand out that advice all over the place.

Would like to know alittle more about your journey.

I have gotten the green light from 2 LLMDs to NOT continue taking Mepron/zith until I have moved to CA and have settled in. I will have been off all meds for 3 months by then. They say I am at low risk of developing resistant babs given my short (4week) initial course of mepron/zith.

I feel okay with this given my severe herx and the fact that OFF the meds I seem to be pretty steady and not getting worse.

I am feeling despair about so little change. On the doxy and then the ceftin at least I had swollen glands all time.

I know people said they herxed after 3 or 4 weeks. I have to be patient. The fear devils can get pretty active.

On a good note, I feel less fatigue than I did a few months ago. So maybe I need to focus on that.

1) be careful what you wish for!

2) You are on some high doses of these meds, are you getting liver panels checked?

3) LLMDs say that if you herx right away, you had a superficial (meaning surface or not deep seeded) infection. If you herx at week 3 or 4 you have a deep seeded infection.

MS dx 2 years ago, after may years of docs and ducks wrinkling their foreheads at hearing my sx.

No milk thistle DURING Mepron/zith.

PLease do a searchin the threads here, That is the newest info. Didnt read it too carefully, but hasnt been too long ago that folks were discussing this.

Please find and read.

Robi's LLMD suggested taking Milk thislte at lunch and mepron/zith with breakfast and dinner. Perosnally I dont think I'd take it at all, but I am not a doc.

Below I copied the info from this website:
http://www.catie.ca/supple-e.nsf/0/7b09aa55a412896c85256c6e0070bf60?OpenDocument

2. Milk thistle and other medications
Below is a short list of some other medications that are processed through the CYP3A4 enzyme. Based on the effect of milk thistle on liver enzymes in the lab, it is possible that levels of these medications may increase if taken by people who are also using milk thistle. This list is not exhaustive:

* methadone
* heart drugs - Tambocor (flecainide), Rythmol (propafenone)
* antibiotics - erythromycin, rifampin
* anti-seizure drugs - carbamazepine (Tegretol)
* antidepressants - Zyban/Wellbutrin (bupropion), Paxil (paroxetine), Prozac (fluoxetine), Luvox (fluvoxetine). Serzone (nefazodone), Zoloft (sertraline), Effexor (venlafaxine)
* St. John's wort
* antihistamines - Hismanal (astemizole), Seldane (terfenadine)
* antifungals - itraconazole (Sporanox), ketoconazole (Nizoral)
* gastrointestinal motility agents - Prepulsid (Cisapride)
* ergot drugs - Ergonovine, Ergomar (ergotamine)
* anti-psychotics - Clozaril (clozapine), Orap (pimozide)
* sedatives/sleeping pills - Ambien (zolpidem), Halcion (triazolam), Versed (midazolam)
* erectile dysfunction drugs - Viagra (sildenafil)
* street drugs - ecstasy (MDMA)
* lipid-lowering drugs (statins) - Lescol (fluvastatin), Mevacor (lovastatin), Pravachol (pravastatin), Zocor (simvastatin)
* transplant drugs - cyclosporine (Neoral, Sandimmune), ProGraf (tacrolimus)

Milk thistle also has the potential to lower levels of the following drugs in the blood:

* anti-parasite drugs - Mepron (atovaquone)
* sedatives/sleeping pills - Ativan (lorazepam)
* hormones - estrogen

Dang.

Anyways, week 8 for me. 2 Zithro day, and 2 yummy tasty teaspoons of the Golden Nuke. We're supposed to do 3 weeks artemesia (for those who are taking it) and one week off. Take on empty stomach with grapefruit juice if you can. I'm going back on that today.

Am feeling, overall, MUCH improved. Hell of a herx early on... almost took me out. People reminded me "it's the Mepron talking" - it can cause deep depression.

Pain is still present in my feet and hands. Brain and memory are clearing. Am able to run up the stairs some days. It's really working.

I have another 3 weeks to go and then will either do one more round or go on Flagyl/Ketek for a while.

And I was ready for I.V. before this.

Keep it up, and thanks for starting this thread. It's heartening to hear the success stories.

Trails... glad you got your old name back

Although I do the tri sports I have never competed in a triathlon. I did, however, do a cycle on part of the Tour de France Alpines route back in 98 for 10 days. It was sheer torture on the hills. That was pretty much the last big athletic endeavor I managed before my body started to deteriorate.

Yes, I put on tons of weight as my body steadily slowed down and the joint pains became constant. I still exercised religiously every day. Then, I crashed big time. My body simply went into shock and I could no longer function at the same level.

I started abx in late 2002 and tried to exercise but, with a PICC line I was limited. So, I got into Ashtanga Yoga. My MDs and nurses begged me endlessly to Slow down and just rest. I never really did until I stopped getting better. I had a missed co-infection, Babs, and Systemic Candida. By February of 2004 I was simply unable to walk. I dropped 50 lbs and my muscles atrophied. It was the most depressing time for me. I tried to stretch and do yoga every day, even if from the couch.

Bottom line is, I never really stopped moving, even if it was a figment of my imagination. I disagreed with my health care providers that I needed to stay still. I firmly believe that exercise and a good diet kept the Lyme at bay for 12 years. I also believe that movement is the best way to oxygenate the blood.

I am by no means well yet. I am at 50% better. I have a long way to go. But, I competed in my first 5K in years on May 1st and finished - not fast, but I finished. Could not move for 2 days after. I told my MD and he FINALLY said that it is ok for me to exercise because he sees that it keeps me in a better place mentally. When I feel a herx coming on, I run or cycle until I am sweating and aching. It is the only thing that takes my mind off of the pain. The endorphins work like a pain Rx for me. I have never filled the Rx for pain meds. I will say though that I have had to stop in the meiddle of a run to vomit from the dizziness so, I am not recommending this for anybody else. Everyone has to listen to his or her own body and to know her limitations. For instance, I cycled at 5:30 this AM because I am afraid to be in traffic, in case I fall - I'm still a little unsteady.

So, that's my story. I understand where you are. If you can muster up the energy (it's mental) to move then do it. I think, in your case, it will help you get through this menacing illness.

I can't reiterate enough that I am not saying everybody should do what I do. It is just what works for me right now. It's that or going back on anti-depressants, which I hated being on for several months.

Hope this helps. Hang in there, Trails.

I really appreciate the time and energy you put into that post. I think it may help others who are depressed about execise too.

I know I couldnt push myself as you do. It is not my style. But I have loved Yoga for many years and maybe in CA there will be a good practicing group for me to get into.

I would like to respond more fully, but I am afraid we are off topic-eh? So if I get the urge, I may post a new topic about exercise. Thanks again for the encouragement. ANd much luck to you and your 5am bike rides! Last summer I was getting up that early to ride too, but it was the impending heat, not the traffic that got my butt outa bed that early.

Everything is "on topic" with Lymies - we can't focus so straying is par for the course.

Think I'll watch Shark Tale tonight. That's about the level of mental concentration I can handle on a cool Friday evening.

Take care.

Apparently I've been taking heaping teaspoons and this bottle has lasted me only 3 weeks instead of 4.

I've been feeling much better. Sleeping less and am becoming smarter. I think the fog is lifting. That or I'm growing a brain.

Still alittle tired but not that horrible fatique. By some miracle I worked 27 hours this week.

Still waiting for the herx........

I'm not sure what you're topic really meant. At first I took it to mean that you were looking for friends to email with who were going through the same kind of treatments as you are. Then I read all the many, many replies without a word in that direction. (Although all were fine replies) So now I am not sure.

If you are looking for an e-pal, I'd love to email with you. I took Artimisinin Dec-early April. Then I started Mepron and Zithromax and will continue until August.

Anyway, email me or respond here if you are interested in supporting each other in a more personal way.

Thanks to all who contributed to this thread. It contains a lot of valuable info!

Hope all is well or getting better.

Soooo......... went to my appt w/ Dr. S in H, NJ today. I've been feeling really much better this week. I'm starting my 4th week of Mepron. Had to get a refill because I used it up in 3 weeks instead of 4.

Walked in and said,"more mepron please." He seemed very happy that I was feeling better. I really really like Dr. S. It's almost like he reads my mind. I told him I was worried about herxing. He said it might not happen. I might just feel better and better. I'm into optimistic thinking today at least.

Best case scenario 4-6 months of mepron. Worst case 1-4 years.

Told ya it was boring!
Heather

I'm really achey today and couldn't go to work. I'm super confused and my thoughts are jumbled.

1) Why did you stop the photos? It was keeping me smiling.

2) Where are the ticks on the jersey shore? By this I mean, if one was to be in OC and have a house on the beach....how could one prevent getting a tick bite? I may be visiting my folks beach house later this year and this is VERY scary for my paranoid heiny.

Two years ago we went on a "nature" trail in cape may. I wore long pants and tucked em in and did a check and EVERYTHING and in the middle of the night I freakin found I TICK crawling in my bed!!!

I will never go to cape may again. But, if one stays on the sidewalk and on the boardwalk and on the sand, you think I'm safe?

Just wondering since you are from NJ.

Noone ever mentioned the pics. I just thought everyone was being polite. I like them too.

Ticks are everywhere. Birds carry them everywhere. Although I've never heard of anyone being bit on the beach or the boardwalk. You should feel safe on the shoreline.

Mostly people get bit on trails, in the woods, pine barrens, marshes and camping. Where there is alot of wilderness.

Well it's official I'm totally herxing at 3 1/2 weeks. It really started around 2 in the morning.

ralphing
headache
body aches
dizzy
nausea
feeling like a mac truck hit me

really vivid dreams (screwing with my head)
bottoms(Heals)of my feet hurt

This means that you have a deep seeded infection. (so says my LLMD) If you herx this far into taking meds. Not great news, but good news that the meds are working-eh?

Are you taking epsom salts baths? Even in this heat, I would.

I take the probiotics and vits/antioxidants at noon.

I thought people were crazy when they said,"I like the taste." or said, "I just poured it on my food."

Now I understand! It works..... It really works! LOVE LOVE LOVE MEPRON!

I was just reading through your post and got to the part about how you used to be "pedal to the metal" before catching Lyme and babesia, and how now you are learning to live in a different body. If babesia is indeed your worst problem, especially if you have been sick for many years, there's two other side effects you should be aware of.

First, if you really are hitting your worst health problem, your cortisol and adrenaline levels may abruptly drop to where they should be when they aren't revved up. That's healthy, but it feels like you are floating through zero gravity in deep space--you will have to relearn how to take initiative, be energetic, and protect yourself from the usual nonsense people encounter on a daily basis. Lyme patients can get used to being on overdrive.

Also, there's bound to be a bit of an identity crisis if you get better all of a sudden. Don't let yourself slip back into being sick, just to feel like your normal self again. Just fill the huge, empty space in your life where Lyme and babesia used to be with little routines. Start with something small, like taking a walk every day, and build up to something wild like a career change or running for President.

Oh yeah, one other thing. I'm not sure if someone mentioned this yet, but be super-cautious of your depth perception. When I first started mepron, I almost walked into glass doors and walls many times, and almost put a cup of scalding coffee down on air instead of a glass table top, because I couldn't judge distance anymore. Also, I suddenly couldn't quite figure out stairs and street curbs. It might be wise to hold off on driving much until you get used to the mepron.

I got to experience my first Mepron herx last November...now he is going through it.

He sat up in bed 5 times last week before starting treatment...waking me...asking me if I had felt this way...the way he was referring to was nightmares and then not being able to tell if he was awake or asleep.

Poor Guy...anyway hopefully he will join the club here.

Dr. WiseAss - I am so glad you are getting treated for Babs...Are the chest pains subsiding? Hang in there!

I am on day 8 of my second go around with Mepron. Am feeling pretty yucky but some of the Babs relapse symptoms are starting to abate already.

Liz give a pretty accurate description of just what it is like. I too hav been known to put my cup down on a non-existent surface. But, I'm a pro at this and know to look for the table. Don't lose hope, it does get better. My peripheral vision was non-exitent my first month or 2 on Mepron. And, the nightmeares were horrible.

But, hang in there all. I am so glad to be back on this dizzy ride because I know I am getting better while on it. Lots of what you are feeling is the med not the Babs. Mepron is weird science.

Went to a Lyme "expert" yesterday (Steere camp) who, predictably, said I was cured of Lyme after 3 - 6 months of abx. Couldn't really explain why I was still soooo sick after a 6 months of abx and a 5 month abx break. Babesiosis is about all we could sort of agree on (just barely). So, take care of this co-infection. Ride out the Mepron. Can't get better until you beat this. Just my opinion here.

Happy 4th.

Getting ready to start this combo and have a couple questions....

I am just not able to do a good search on it right now but here are my ????

Do you take it together??

On or off an empty stomach??

She is started me with 600mg of Zith and 1 teaspoon twice a day.

I have done mepron before but not with zith.
I slept the best I had in years while taking it.

Not sure what the combo is going to do to me??

I liked the taste too.. My 13 year old daughter took 3 rounds of it and never complained.

You MUST need to be on meds if you like the taste of Mepron. I think you are very sick.

I too did Mepron without Zith for some time. It didn't seem to make any difference when the Zith was added in for me, except to upset my tummy. Am doing Mepron (sans a macrolide) now but with Artemisinin and Bicillin. Mepron is working.

I've skipped a day. It's up to you and your LLMD. Sometimes you just need it. but if you are tolerating the meds.... then just keep taking them.

I get the creepy crawlys when I have too much sugar. Are you on the antiyeast diet? Not that I should ask that....... I'm bad, bad bad.

Is this a herx or is my neuro stuff getting worse? I went to PT and she said I was weaker.

It is hard to stay positive, when I want to either have a temper tantrum or get really mad at myself.

------------------
ICEY

Well I sure everyone will be thrilled w/ my new symptom........diarrhea! The worst I have ever had.