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» LymeNet Flash » Questions and Discussion » Medical Questions » Mepron Buddies Reunite!

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Author Topic: Mepron Buddies Reunite!
trails
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Yesterday I started again on the yellow brick road.

Mepron.

I have been ramping up the zith for two week prior to this. I am doing pretty good, but so scared b/c of what happened to me last time. Will find the linki to the old mepron buddies later.

Where are the old timers? Anyone wanna chime in here and let me know how you are doing NOW on mepron? Stinkbug, Pab, Alyiex, BC, And many others I am forgetting right now!!! sorry!!! blame it on the lyme. please.

Let's get together again here and let eachother know what is helping and what isnt!
Thanks,
Trails  -

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jloisu
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I'm on month 2 of the Mepron/Zithro combo. Not sure yet if it is helping, but definately causing headaches and fatigue so I think it is doing something.

Good luck w/the yellow bug juice and the pink pill....keep me posted.

Anyone else?

--------------------
jloisu

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HEATHERKISS
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Just started month 6 of mepron. I'm taking it w/ biaxin.

My husband satred the mepron zith combo and had to stop becuase of diarrea. Any way he is ramping up the zith and then we'll add the mepron.

Are you going to ramp up the mepron too? Currious cuz my husband is in the same boat as you.

--------------------
HEATHER

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hopeful123
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Almost finished with first month of Mephron. It is working some because I notice my concentration is better and I am a little more present!!

It is god awful stuff, so thank goodness it is working.

best,
hopeful123

--------------------
some days you're the bug, some days you're the windshield  -

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trails
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Heather...you member me? I member you!

yeah-I'm a rampin. started with one teaspoon once a day---for one week then next week will add the second teaspoon.

How's the hubby doing with it all? and you---6 months now---any improvement or change???

sooooo curious.

My LLMD says only 3-4 bottles max. Then onto other treatment.

I hope so!
Trails [Razz]
PS-we need more pics!

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LC
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I'm just finishing my 7th bottle. So that's about 6 months.
I take it with Ketek and Artemisinin.
I have definitely improved with less head/teeth pain and pressure, less neck & shoulder pain, less fatigue and a bit more energy.
I've been able to introduce some light exercise back in to my life.
No rampin for me, went right into 2 tsp/ day.
LC

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lesley1954
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I'm wondering how many people pulse Mepron. My 14-year-old daughter is on second week. Her doctor didn't say anything about pulsing it, but I know I've read that some people do. Thought I'd get a little input before giving her a call.
Thanks,

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pattiecake
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My daughter is on her 6th month of mepron. HOwever she had a relapse and so Dr. J switched her Zith to Biaxin XL and that is exactly what she needed. SHe is doing much better after her relapse.
pattiecake

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fatigued15
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My 25 year old son started the Mepro/zith about 10 days ago. He started with the full dose. Had a few days of chills and increase fatigue but otherwise has been OK.

How has the HERX's been for others taking this? My daughters PCR just showed babesia so I am sure her time will come to.

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lesley1954
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Patticake,
How does Dr. J have her take the Mepron, continuously or pulsed in some way -- 3 weeks on and 1 week off, for example.

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elle
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I'm getting ready to start the 3rd month of Mepron. The first month was with zith & ceftin. This last month I have taken 800mg of Ketek.

The ketek makes me nuts - emotionally dramatic. Overall I find that I'm doing okay. I started at 2tsp per day and was told not to miss a dose because my blood levels needed to stay up for this med to be effective.

My body temp is up to normal for the first time in many years and its actually uncomfortable. Something I will need to get used to. Migraines and IBS have pretty much disappearred and I have to wonder about the original diagnosis of these symtoms to start with.

--------------------
When I feel blue . . . . . . its time to take another breath

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pattiecake
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Lesley,
no he does not have her pulsing. SHe takes it every day.
pattiecake

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trails
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WELP. Today is the day (day 29 on mepron/zith) that I herxed or WHATEVER so badly that I lost consciousness and had my first ambulance ride.

That was in May of this year. Then I didnt take ANY meds for many months while I moved and had surgery.

Now I have been on mepron zith for 29 days and I am not even FEELING the effects of the meds at all. No sweats, chills, dizziness....nada. Just my regular lyme self---confused, hard to concentrate, word problems, headaches, ringing in ears, twitching, shoulder pain.

Perhaps I killed allllllll the babs in one damn shot?? I freakin hope so, coz I know some people have been on this stuff for YEARS without results.....I REFUSE.

Just wanted to check in.

Others?
Trails [Big Grin]

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brighty
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I started on Mepron/zithomax in Sept. Within 10 days my fatigue and chills were gone. I felt like I was twenty years younger. However my thinking was still poor. Can't remember my name some days.

Ran out of both medications in late Sept. Tried getting hold of my LLMD, he was away for 3 weeks. When I finally got to see him in late October I was back to daily fatigue and terrible chills similar to what one sees in TV shows with people having malaria.

Have been on my second batch of Mep/zith now for 12 days. Fatigue and chills almost gone. I get through an entire day without a nap but still don't feel 20 years younger. Also on Zithromax 5 days on and 5 days off. Diarriah with Zithro.

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PinchotGail
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I must have really stubborn strain of babs.....I started in 3/04 with 7 months of mepron/zith/art and then added in Ceftin. I did get some energy back and my brain was better but still so tired...herxing every month & pain .....had to quit work.

Went off for one month due to vertigo..then back on but with Ketek and Mepron for four months.

Then abx break of 8 weeks of detoxing with cholestyramine. Brought some energy back and dropped my pain level. [Smile]

Then was on Ketek and MIno this summer......well testing in Aug. revealed Babesia still here and now I have Bartonella .......so right now on Malarone/Ketek/Art/Omnicef.......it is kicking my butt, but i think predominantly the bartonella is what is stirred up the most.

Hoping to move on to Levaquin or Rifampin and Ketek in December.....this is for the birds.. [shake] .. I don't know which is worse bart or babs!!!!!!!!! [dizzy]

Anybody else have bart and babs???

Gail
 -

--------------------
Strength does not come from physical capacity. It comes from an
indomitable will ~ Gandhi

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groovy2
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Hi All
I was on 4th bottle of mepron
and Biaxin-
Has made a Huge difference for me--

I ran out of mep last week and
Pow the babs is back--

Was nice while it lasted-Jay-

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trails
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Me---I got ALLLLL the TBD's they can test for. I don't think I can distinguish between the sx for any of them though...can you?

I know that I had NO babs sx BEFORE starting mepron/zith this past May, but tested positive for it and BEGAN having sx when I started those meds.

Isnt that crazy?

Now, I dont have the sweats. chills, fevers, like I said...just the other things I think are LYME but maybe they are bart or HME???

trails [Roll Eyes]

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lymedad
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My daughter started on multiple antibiotics last week.

Last week Zithromax by itself, now combining Plaquenil this week and is supposed to add Mepron next week.

We have taken the script to three different pharmacies and they do not carry and can't, or won't, order.

I found one that will fill the script, but he called our insurance and said they would not pay for the Mepron. He told us the cost would be $1100 for the first month's prescription.

Anyone else had this type of problem??

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lymster
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Lymedad:

I get my mepron from canadadrugs.com, about $550 per bottle 21 day supply. I have med insurance but I only get $5000 per medications/year and that usually last me for 3-4 months.

Hope this helps,
Lymster in WA

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lymedad
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Lymster,

Thanks much. I will take a look at the website tonight.

I hadn't thought about researching my daughter's cap on meds.

Again, thanks

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sweet pea
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Trails,

I have some of the same issues as you....I do not have classic babesia symptoms, just headaches, sometimes associated with a feverish feeling in my head but no actual fever. I probably have Lyme and babesia and possibly bartonella but can not differentiate between symptoms. Although sometimes I have burning skin which I think is bart.

I have done 2 rounds of mepron/zith, several months each. Each time I have felt better within 1-1/2 weeks, which lasts a couple of weeks. Then I relapse. Right now I'm on my 5th month of mepron, felt great in late August/early September and that was it -- then symptoms came back. Last month was switched from zith to ketek.

I took Riamet back in February, which also did the same thing -- felt great for a couple of weeks, then relapsed. (Can't get any more Riamet due to new US Customs/FDA rules.)

There is an LLMD that believes that long-term use of mepron is ineffective, but I haven't done any research on that issue, and my LLMD believes the opposite.

P

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trails
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Pea- Love that name--I actually USED to get real measurable fevers...when I started on the mepron/zith and took one month of it in May, and the fevers continued alllll throughout the summer even while NOT on the meds, but then as soon as I started THIS round of mepron/zith the fevers STOPPED! Also I had NEVER had them before starting mepron/zith. I havent found a soul like me in THAT way, which worries me, ya know?

The burning skin: can you describe more? I dont think I have that. I am so sorry that you have had to go through so much! Vermont is beautiful and full of TICKS!

Lymedad- I had intense and LONG drawn out battles with my insurance over coverage of mepron AND zith. I would spend HOURS and HOURS on the phone and get right back to the beginning again without the meds for weeks on end. The ONLY things that makes a difference are:

You must call the insurance or script plan and NOT go thru the front people who answer the phone...get a supervisor right away. Explain to the super that this is NECESSARRY medication for your very sick daughter that has been PRESCRIBED by a MEDICAL DOCTOR. Usually they WILL sympathise and at least get you going on an appeal or tell you the steps you have to take to get what you need.

You must call the doctor's office and ask them to call the insurance/script plan to get a pre-authorization. If they are a real LLMD then they will have done this a million times. It is par for the course for lymies. They MUST fight FOR you. I had a doc whose office staff was NOT so good and I ended up spending thousands on meds, then I moved and switched docs and the new staff advocated for me and sent a letter and BANG...I am saving hundreds each month!!!

It is not easy and takes time...get a good phone headset. It helps with all the waiting on the line. Take notes and ask for names and ref numbers too!

I do believe these two steps will work in getting the meds covered and cheaper! I have seen it in more than my own case. Much luck to you!
Trails [Smile]

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suki444
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Hi
I have taken a year of Atov/azith/artemesisin in the past, sometimes adding Bactrim. The European strain is very virulent.

I relapsed this year and took 9 weeks, latterly taking it with Ketek - an effective combination.

However I did not do a 5 month course then and it has come back AGAIN. Can't believe it...my symptoms are v. bad air hunger, swirling head, sense of imbalance and heart palps.

So I'm on another 5 month course minimum.

Pinchot Gail - I have Babs and Bart too

Emma

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lymedad
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Trails,

Thanks for the input. I'm ready to fight for whatever our girl needs. I do appreciate your thoughts.

LymeDad

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sweet pea
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Hi Trails,

Well let's hope that the fevers stopped because you are getting better!

The burning skin feels like mild sunburn. It is more in my arms than anywhere else, and is associated with a slight electrical feeling.

Yes, Vermont has become a different world to me....I just wish everyone here was more aware.

Lymedad,

I have also found that putting up a fight with my insurance company has helped me get what I need. Persistence and multiple phone calls pay off -- each person who answers the phone there seems to have a different set of rules, some people are more willing to help you than others.

P

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timaca
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May I add, with regard to insurance appeals, that letters work well, for you can document them.

Go to "General Support" forum and see my post about Insurance Appeals.

Timaca

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suki444
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Sweet Pea
What does the LLMD you mention suggest instead of the long term Mepron if he thinks it is ineffective ?

Many thanks
Emma

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trails
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good question sukki!

Update: I have a low grade fever and feel like ****!

[woohoo]

Isnt that great news?

I got my period and had a VERY stressful sub job and that was all it took---the bugs are dying.....die suckers DIE! [Big Grin]

The sunburn thing doesnt happen to me, thank gawd, I have heard others complain of it and it sounds awful. Like soaking in oatmeal, cream or slathering aloe is all you would want!

But the feverish FEELING without the fevers actually does happen sometimes...it feels like maybe a hot flash would feel.....my face gets all red and my forhead feels hot, but the under the tongue temp is not raised, and then sometimes it is.
How strange.

This crappy feeling is so familiar to me I could almost TASTE it. I just hope it cools off faster and doesnt land me fainting like last time!


Hang in there everyone!
Trails  -

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trails
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Herx is over and didnt end up in the ER!

Up for anyone to comment, rant and rage away.
Trails [Razz]

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HEATHERKISS
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I'm off the yellow gold!!!!!!!!!!!!!

--------------------
HEATHER

 -

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trails
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Heather---great news! How come? What's your next step?

I Havent been around much lately. checkin in.

Herx is really bad and alittle early this month. DIZZY, face heat/feels flushed, low grade fever, neck soooo stiff, floaters in vision, tummy sounds like a monster, errrrllloooooooopir.

Emotionallly in hell. Depression/suicidal, nothing is bringing me back to anything good in this life.

[Frown]
Trails

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timaca
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Trails~

You hang in there girl! I could sing you a song...that would make you laugh (and cover your ears) [Big Grin]

I could do a dance, and then I'd trip over my feet and make you laugh again!

Get mad at the bacteria for the hell they make us go through....then see the light at the end of the tunnel, for THERE IS A LIGHT. You've seen it before, and it's still there, just a bit veiled at the moment for you.

Do something special for yourself in the middle of your hard time. Do something special for yourself DAILY while you're going through this. Even if it's going to bed early. I'm holding good thoughts and saying prayers for you.

[group hug]
Timaca

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JustMeInCT
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I started Zithromax - 3 pills a day - about 4 weeks ago and started the Mepron - 2 teaspoons a day - about 3 weeks ago.

I do not know if it is working. I do not feel any different although my diarrehea is a little more frequent.

Does anyone have any thoughts on this?

Thank you.

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HEATHERKISS
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I'm not on the yellow gold anymore and tolerated it pretty well for almost 7 months.

I had my mepron herx at 3 1/2 weeks. Mepron really helped me out of the brain fog.

My husband did not tolerate mepron/zith very well. He had diarrea. What helped him was 2 acidophillus pills, 1 physillium and 1 probiotic at bed time at least two hours away from the meds.

The LLMD did switch him to Malorone because he was gagging on the mepron.

I'm on flagyl alone now. I guess next month the LLMD will add another med.

--------------------
HEATHER

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trails
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One more Bottle and I am done with the golden goop!
That's the consenses of the LLMD.

Still not exactly sure why though, coz I am still having herxes and symptoms, but we got off talking in so many directions, I never got a clear answer as to why stop now. I do know he thinks it has been "enough" of the stuff to adequately kill the babs. It will have been my forth bottle total. 3 Bottles this past time in a row.

I move into Plaquenil now (while still on mepron/zith) and then start amox and probenicid in about a month when finished with mepron zith.

JUST ME IN CT: About the bowels, many foks have all kinds of stuff both with lyme and babs AND b/c of the mepron/zith. Some go towards diarreah, some towards constipation. Did you have any probelms before starting mepron? Are you getting enough good probiotics? Diareah is a good sign of not enough good flora. Good luck and keep asking!

Hooooray for leaving the yellow brick road!
Trails

[Cool]

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sweet pea
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quote:
Originally posted by suki444:
Sweet Pea
What does the LLMD you mention suggest instead of the long term Mepron if he thinks it is ineffective ?

Many thanks
Emma

Emma,

I was just reading this thread and saw that I didn't answer your question. This LLMD suggests only one week of Mepron! I can't remember what he does after that. Sorry. But I am still wondering if I should be pulsing the Mepron (like 4 days on, 3 days off), even if I'm taking ketek or zith. I have an appt. with my LLMD on the 27th so I'm going to ask him. I've been treated for babesia for 16 months!

P

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suki444
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Hi

I know Dr B thinks you should not pulse Babesia meds as the parasites can breed resistance so you must always take Atovaquone with a macrolide and for a continuous course - usually in 5 month cycles.

P.s. I am also in this for the long haul...did a year of Mepron/Zith/Artemesia then relapsed 7 months later, then treated for 9 weeks then relapse 4 months later!

My LLMD said last time I did not take the meds long enough so I have to follow the 5 month course this time.

He said Babesia was tenacious and it does come back. I asked how others seemed to get over it so easily and he said it just goes dormant.

BW
emma

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mimi
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Hello everyone I wish I could be a mepron buddy again. Maybe soon I will join the yellow paint club. You guys really helped me when I began my first round. I hope you all will be doing well on the paint and feeling better soon.
Take care,
mimi [hi]

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HEATHERKISS
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up for new buddies

--------------------
HEATHER

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docjen
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Thanks, Heather, for bumping this! This is really good information, but also a bit discouraging. So many seem to relapse so quickly...

docjen

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liz28
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Hi, Trails.

In the spirit of "Do unto others...," I'm starting primaquine tomorrow as a Lymenet guinea pig.

Will let you know if it makes any difference.

http://www.malariasite.com/malaria/primaquine.htm

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groovy2
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Hi All

I took mepron 5 bottles--
It worked really good for me--

I felt better in 3 days and
in 3 weeks I was doin Good-

I continued to get better
until I ran out of mepron
after 3rd bottle--

In a 3 days the babs was back-

Took a 4th and 5th bottle of
Mepron and the effectiveness
seemed to be lower--

I think missing Any doses of
mepron at any time is bad--
Be very careful about taking
doses at correct time also-

Its Super Important to eat
really grease food when you take-
Like sausage -Meat seems best
I also found that eating
a larger meal helped
in having best effect--

I also drank a few ounces
of olive oil some times--

When I got close to running
out of the 5th bottle--
I got some Bactrim DS--

I took both mepron and one half
of a bactrim for 2 days--
Then I ran out of mepron--

I started taking one
Bactrim DS 800/160mg
2X a day---

I also am taking one Biaxian
500mg 2X aday -- for lyme
Artemisinin 100mg 3X aday -
(I was taking with mepron also)

Now 3 weeks into taking the
bactrim I feel perty goood--

I have not gotten much sleep
but I feel more rested --

The night sweats are totaly gone--
and only flaired when I changed
meds for 3 days but it wasnt bad--

On the third day of full dose
I got a migrane headache that
lasted 19 days 24x7--OOCH--
(On mepron headache first 3 days)

But I was feeling better over
overall--and better each day-

3 days ago the migrane just stopped-
and has not returned so far--

In the 3 weeks I have been
taking Bactrim DS I have made
good progress--

My very stiff neck is
almost completely gone--AAhhh

Overall joint pain is
almost gone--AAhhhhh

My body tempature seems
to have stablized at
between 97and 98--
Has gotten as low as 93
before the bactrim--

Cold hands ect mostly gone

My heart beat has calmed down
now also--
Chest pains mostly gone-AAhhhh

My legs have calmed down
(restless leg?)

Brain fog has lifted a Bunch--
Short term memory is getting better-

The ringing in my ears has gotten
lower and has been changing tones
like it tuning in better-

I have noticed I am having more
trouble typing and spelling--
I have not gotten any sleep
for weeks so that could be the cause--
My hand movments seem to be a little
more jerky also but not bad-

My overall mood is much better
because I am feeling better
and I am not worring about
how to get some more mepron---

It is important to take
Bactrim on time--

Warnings--
Some people can be alergic
to Bactrim (Sulfa drugs)
and can cause gull stones-
so drink lots of water
Read up on it--

Now for some Really Good News--

Bactrim has been around a long
time and its cost is Much Less
than Mepron-Its cheap in compairson-

I think it will be easier to
get a doctor to perscribe
to you because it has been
around so long--

Bactrim also comes in generic--

Because my LLMD is swamped bizzy-
When I was running out of mepron-
I flew to El Paso for a few days-
I went across the boarder to
Mexico and went to several
pharmacies--

I was able to get

Bactrim -- a 3 month supply $27 -
Biaxan 500mg $1 each
Bicillin $4 each
(for future use)

--No perscription required--

At these prices you can Afford to
get well and not empty your bank-

Drug companies are screwing US --

I have a post that is titled
-Sunny Vacation in Mexico--
it has futher info about
going there--

I do think that because I had
taken 5 bottles of mepron
that my herx reaction may
have been less severe

So maybe if you have not taken
mepron yet it might be a good
idea to take lower dose in the
begaining--

The Bactrim caused the longest
and strongest herx I had --
so Becareful--Jay--

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trails
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Hi newbies and oldies alike!

Gues what guys????

[confused]

I finished my last drop of Mepron last night!!!

[woohoo]

I have put my teaspoon back onto the measuring spoon loop so I can use it for cooking again.

I started taking 1000 mg of amoxacillin 3xday and will start the probenicid in a week. I am also on Plaquenil.

I dont think I kicked the Babs completely. But the LLMD likes to switch up the meds and not stay on anything for too long.

Keep us posted LIZ! You are the lab lizard.

How many of you have hot face, low grade fever and cold and clammy hands? I get this during my herx.
Curious,
Trails
 -

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5dana8
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Someone posted a reply that almond butter wasn't good to take with mepron.

I will be starting this & wonder why not?
My almond butter say 20 grams of fat in it.

Is it the wrong kind of fat.?

I am not sure olive oil is enough either.

mepron is so expensive I don't want to screw this up.

I am inclined to go with drinking some half&half and bacon.

Any ideas?

--------------------
5dana8

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trails
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I never found out why people believed almond butter was not a good fat to combine with imepron. Look back at some of the other mepron buddies threads to see, but there is not much there.

I decided to get some other types of nut butters. Peanut isnt good on me, but it would work great for others. I chose cashew.

I also bought some fish oil per Robi's request, but it was AWFUL in my opinion. She loved it though. I got used to the taste but I called it my PLEDGE--it smells and tastes like lemon pledge...no kidding. I love fish and would prefer just to taste the dang fish. ANyhow, it is awsome stuff that is great w the omega 3's too.

Take the mepron with a meal. That's your safest bet.

Good luck!
Trails [Wink]

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HEATHERKISS
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up for the mepron buddies.

--------------------
HEATHER

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Starphoenix
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I'm a Buddy! I'm a broken-down Buddy!

(Please see my post above, "Mepron Torture."

Whoo-ee. At least four teaspoons per day.

Steph

P.S. Is this stuff vile or what? I'll gladly gulp it for health's sake, but it is NASTY. I find that holding my nose helps me get it down.

--------------------
Learning to love, and loving to learn.

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trails
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heather are you re-joining the group?

I might be if Larium isnt a go for me.

[Frown]

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HEATHERKISS
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Still off of mepron and doing well.

Up to see if everyone is still on the yellow gold or if some people feel like babs is beat.

Updates please.

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trails
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up
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DolphinLady
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I completed 6 months on mepron/zith/artemisinin a couple of weeks ago. Many symptoms resolved.

However, I still get the red dots on my forearms after I shower. They are light and resolve within the hour. I got them for the first time on waking this morning. So I may still need more babs treatment?

I never tested postitive for babs but had many telltale symptoms.

I'm currently back on lyme tx, biaxin/omnicef. In the meantime, I have a watchful eye out for any indication of a babs relapse.

I've heard some folks relapse within days of stopping tx, others under stressful situations. And then there are those who feel one course of babs tx takes care of it.

Any thoughts?

Best wishes in the meantime.

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tabbytamer
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DophinLady,

Just curious, did you ever get tested for Babs WA-1 strain?

--------------------
Tabby

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California Lyme support group

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SAK
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I've been on mepron almost 3 weeks now. I feel yuck. I hope this feeling goes away soon, but I don't know. [confused]

I'm just much worse making a step and balancing. That was my worst symptom before and it's even more worse now.

I haven't even finished the first bottle yet. I didn't know you can take artemisin while on mepron too!

Desperately hoping it's a herx . . .

--------------------
Be well,
SAK
 -

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trails
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Hi SAK!

I am so sorry to hear about how you are feeling. I really empathise! I get/got so dizzy with mepron I actually fainted last year.


I did not have any dizziness prior to mepron treatment. I was told it was a herx by 3 different LLMDs and that dizziness is a babs symptom.

I am currently really dizzy just taking artemisinin with zith and plaquenil. My liver cant tolerate the mepron right now so I am on a break from it.

What are your other symptoms and history?

It sounds like you are having a herx or flare as opposed to a side effect. I am not aware that mepron can make you feel unbalanced or dizzy as a side effect.

Glad to have you in the bud buds!
Trails

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liz28
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Right now I'm doing the official treatment for plasmodium vivax: chloroquine, doxycycline, primaquine. Artemisinin is also in there, 200mg twice per day.

I've already done longterm primaquine, and it has done a terrific job. However, the babesia was overcoming mepron once again, requiring additional options. Primaquine only kills the dormant forms of malaria and/or babesia.

The chloroquine is never taken longterm on a daily basis. You take it on a daily basis for five days, then cut back to once a week for 2-3 months, add in daily doxy, and get some primaquine in there to kill the dormant form of the disease, and help counteract drug resistance.

My next choice if this ceases to work, or if relapsing occurs in the future, is to go for a quinine combination. But so far, so good. I've been on chloroquine two days, I'm jogging, there are some mild babs symptoms but the seizures haven't come back, and I've cautiously stopped taking mepron.

It's incredibly scary to do that, but sooner or later, you've just got to jump off the high dive. I've been on mepron almost two years, and the side effects are appalling: memory loss, liver problems, kidney problems, exhaustion, and the development of drug resistance. Feh, who needs it.

I'm also on mega liver support and super mega anti-yeast. Ketek is the support macrolide.

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DolphinLady
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tabbytamer,

Yes, got tested for babesia wa-1. Says negative as do results for babesia macroti per Igenex.
What are your thoughts?


All Buddies,

What lab is considered best for babesia testing?

Thanks.

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tabbytamer
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DL,

Just noticed you were also in California and wondered if you had tested for WA-1.

I came up negative on Babs microti, and negative on two Babs FISHs. Then new doc thought to test me for WA-1 and it was positive.

All my Babs tests were all done through IGeneX.

--------------------
Tabby

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California Lyme support group

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trails
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Igenex would be the best, but I havent yet gotten a positive from them. I have gotten a positive from MDL though.
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SAK
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Trails, thank you kindly for your empathy!

My biggest problem-symptom has been balancing and walking. I've lost some strength in my legs to climb up the stairs also. I think that makes walking more oif a challenge too.

To add to that, I get ankle twitches, electric buzzing in my left leg. I have nystagmus in my right eye.

Since starting tx I have weakness and fine motor difficulties in my hands. Fatigue and sun/heat intolerance just top it off.

So, out of all my symptoms, my worst one (balance/walk, and leg strength) is even worse now with mepron! Just my luck. This Babesia is really mean!!!

I'm hoping it is a herx. Thanks for your opinion trails. 'Cause if it is a herx, maybe just maybe one day I'll get over it and feel better... [Roll Eyes]

--------------------
Be well,
SAK
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HEATHERKISS
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Trails,

Babs treatment makes all the difference in the world.

I'm still doing well and am done w/ babs. Fingers crossed.

--------------------
HEATHER

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tabbytamer
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Found some lists of common Mepron side effects:

"What are the possible side effects of atovaquone?
* If you experience an allergic reaction (swelling of your lips, tongue, or face; shortness of breath; closing of your throat; or hives), stop taking atovaquone and seek emergency medical attention.
* Other, less serious side effects may be more likely to occur. Continue to take atovaquone and talk to your doctor if you experience
fever;
nausea or vomiting;
a rash;
diarrhea;
difficulty falling asleep;
headache;
cough;
abdominal pain;
sinus inflammation or runny nose;
shortness of breath;
loss of appetite;
anxiety;
weakness;
dizziness;
heartburn; or
an unpleasant or metallic taste in your mouth.
* Side effects other than those listed here may also occur. Talk to your doctor about any side effect that seems unusual or that is especially bothersome."

www.drugs.com

www.medicinenet.com

medlineplus drug info

So when we are treating and have these symptoms, is it the Babs or just the Mepron?

--------------------
Tabby

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HEATHERKISS
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up

--------------------
HEATHER

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trueblue
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^up for Santa^

--------------------
more light, more love
more truth and more innovation

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savebabe
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Hi everyone!

I have just finished my sixth month of mepron. During this time I added septra and took lariam for about two months.
So far, so good.

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imanurse
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I am on my second bottle of Mepron and am taking in combo with zith. Have herxed pretty bad on this combination. Lots of neuro stuff, fasiculations, off balance, tremors, myoclonus. My sweats are lessening but I still have a lot of babs symptoms.

I am going to ask LLMD if I can continue with this treatment for a while.

--------------------
**Eat Chocolate**

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happygranny
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This is the mepron buddie line I was looking for! Glad to have found it when someone from Canlyme recommended I search for Mepron Buddies Unite.

It wasn't that long ago that the last post happened.

You all sound so much more informed than I so I must start reading more often and try to retain what I read.

Today is a better day than yesterday when I posted my own line about Mepron. Still feel discouraged and think I should be feeling some improvement, but at least I know I am not alone in this, and others have used the liquid gold much longer than I and had positive results.

Hopefully there will be more updates to this message line.

Thanks for being there,

Jeannie

--------------------
Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior -
PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness.

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char
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Hi,

I am getting ready to start babs treatment this month. I tasted a bit of plain mepron and then some tutifrutti flavored mepron to see which I prefered.

I had a minor allergic reaction with swollen tongue and bit of labored breathing. Settled down with some benadryl.

So I won't be taking Mepron..

The next day I took 100mg Artiminisin, thinking to start slow.

My equilibrium was a little off, but main thing I was ANGRY. Things that concern me or irritate me had me inflamed.

Do any of you get this reaction? Do you think it is a brain flare?

Char

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sixgoofykids
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I started Mepron, Biaxin and Doxy on Jan. 20th. I was already taking Artemisia, so he has me continuing on with that, too.

I was tired the first few days, but since then I've had a bit more energy than I normally do. I haven't herxed yet, but I guess that will come soon enough.

Doc started me out on 2tsp. twice per day. I've gotten used to the taste.

--------------------
sixgoofykids.blogspot.com

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treepatrol
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Well it finally happened I was shaking my mepron and the wonderful lid came off all over the living room lots hit the carpet that didnt bother me but it also hit the love seat which is part of a set couch and chair which is only a year old.BUMMMER

The carpet is old and I mean old I have resisted replacing it because when I bought the house which Iam still fixing up good old plaster work.
Anyway I lost about half of the mepron.
And what I did to remove staining I immeadiatly got hand towels and soaked the first twwo with water then the other to with water and dawn.

I wiped with dry towel first and immeaditly soaked areas of spill with two wet water towels then with water+dawn rubbed in then wiped with rinsed out water towels then used 2 dry towels rubbing very hard soaking up excess water.

Then I took the cover off the one cusion and put in washer with good detergent washed twice in washer then dryed about 30 mins just in case stain remained buit there was none left. left dry rest of evening.
Hope this helps?

The rugs turned out okay to and the spots that I couldnt attached {{not removable}}from loveseat are clear too.Whew that crap sure reminds me of yellow tint used in paint.


::::::::::::::::::::::::::::::::::::::::::


::::::::::::::::::::::::::::::::::::::::::

I have had some different symptoms sinse starting mepron {{started in oct 06}} I have had 3 bouts with fevers lasting any where from 4 days to 10.
This mepron has deffinatly shaken up the status quo?

The symptoms are similar too lyme but different.

Fevers which I havent had since 2002 after being treated for a year for lyme.
are back?

The acheing is similar.
The pain is similar.
The joint pain if you can call it that is not similar it just feels like wrist or knees and ankels are like you had rested on your hands while watching tv for long periods that feeling is in the above on and off.

Nothing like joint pain I had with lyme which was always sever and painfull like someone beat your joint with a baseball bat and the gout all in one.

And also reoccurring headaches some severe and some like sinus headache or icecream rush?

Thats about it.
Except sleep is different.Sometimes gret other times cant fall asleep s I take melatonin evernight it helps a lot.
Caution when I first started taking melatonin which was about the same time I started mepron I herxed bad two days.
I am thinking it was the melatonin because its a superantioxident hormone.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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