As you've seen in a previous post, my wife started on Mepron and Zithromax last Thursday (Nov 22nd).
She has been taking half the doc's recommended dosage. She takes 1/2tsp in the morning and 1/2tsp in the evening.
Everything was going fine until Sunday, when she started to get fatigued. Then on Monday she started to get slight tightness around her chest + more fatigue. Today it became brutal - she has crushing fatigue, significant chest tightness, and leg pain. So she skipped the evening dose of Mepron altogether.
We are glad she didn't start of at 1tsp twice a day. I think that would've landed her in the ER.
My question is: how low can you go and still have the Mepron do its thing? Is it effective to take for example 1/4 teaspoon twice a day? How long before you ramp up again?
She's going to call the doc's office tomorrow but I just wanted inputs on what others did during a Mepron herx.
Posted by lymednva (Member # 9098) on :
I think her LLMD is the best one to ask about this.
Posted by Tracy9 (Member # 7521) on :
OK, obviously I'm not a doctor but I just a similar discussion with my LLMD. I was supposed to take 1 tsp twice a day, but it was so icky I was only taking it once a day at best. He said that was not good...it wouldnt' work. I hadn't herxed, and he said that was why. He didn't think it would have much if any effect at that dose.
I restarted and faithfully took it twice a day...around day 9 or so I started to have a typical herx; exhausted, sleepy, achey.
I ran out shortly after, and have been without it for two weeks waiting for insurance approval. Now I will have to start all over again!!! However there was definitely a difference in response when I took the correct dose.
I wouldn't think 1/4 teaspoon would do anything.
Posted by painted turtle (Member # 7801) on :
I'm not a doctor but have taken mepron. I have tried to get rid of the babesia twice, using mepron.
The first time, I took it as prescribed, 2 tsp a day and honestly, the quality of my life was null. I could not vacum half a room before falling to the couch.
This last go around, I told my LLMD that I could not tolerate the mepron well at all, mostly in my heart.
This last go around, I took it every third day and that was enough for me. Maybe since my density from Fry was 4 out of 5, I have a lot of the babesia.
Even still, I've recently stopped taking it. It may be possible the higher the density, the less a person might be able to take and it still be effective, but I don't know.
I also think herxing is over rated. The last thing I ever want to do is herx. In the beginning, I understand herxing makes sense as it is a sign that the diagnosis is accurate and the medicine is working but after awhile, it gets to a point where herxing is counter productive and doesn't make sense anymore at which point, I question the actual medicine itself and its side effects.
This is just my personal opinion after two years of trying, after having gone undiagnosed far too long.
Posted by beachcomber (Member # 5320) on :
It will get better. I am a Mepron veteran. I just started round 3 of treatment of Babs.
You can work up to the full dose slowly. My MD has me start at 1/2 tsp. and work up over a period of weeks. At full dose your wife probably will experience the herx-like reaction you have described. It may last a few weeks. Though, it passes in time and the chest tightness eases, the fatigue subsides, the sweats and headaches diminish. It isn't fun for about 4 - 8 weeks (in my experience).
My suggestion is to go slow and hang in there, if you can. Rest, eat well, and try not to panic.
Hope this helps.
Bc
[ 28. November 2007, 04:40 PM: Message edited by: beachcomber ]
Posted by yanivnaced (Member # 13212) on :
Thanks for the input guys. She's back to taking 1/2 tsp twice a day now. She didn't call the doc since they would probably say to stop Mepron and see them in 2 weeks, which is probably just counterproductive. Just plan to continue the half dose until she feels better and then ramp up to full dose.
Posted by lymednva (Member # 9098) on :
That sounds like a good idea, especially since she was herxing so hard on that dose.
I've been on Mepron, clarithromycin, and artemisinin for 3 1/2 months now and am finally feeling noticeably better.
I had some very hard herxes, but the last one was much milder and I am able to do more now than I could for a long time.
Tell her to hang in there, it does get better.
Posted by marcelle (Member # 13815) on :
I've been on Mepron for 8 days.
I started with 1/4 teaspoon twice a day and then went up to 1 teaspoon 2 times a day. On day 5 I couldn't stand the pain. It sounds a lot like your wife's. Severe leg, hip, arm, and chest pain. My chest feels like it's being constricted from the back around to the front and my heart palps. I stopped for one day because of my chest and heart.
I called my doctor and asked to be put on 1/2 teaspoon twice a day; he said fine. But 1/2 a teaspoon is still a little too much. I'm taking a little less than a 1/2 teaspoon and the pain is still bad, but I am able to walk around and do light tasks. The pain seems to come on about 30 minutes after taking it, and lasts about 3-5 hours.
In my opinion, I think the low dose is working. It's obviously affecting my body at some level. There is a doctor who starts of very slow with Mepron. I'll see if I can find that article for you.
It's all so scary, especially with the chest tightness; but as I read on lymenet, it seems to be a common problem.
My concern is in reading the literature about Mepron it seems they mostly tested it on patients with AIDS. It seems to me they should have tested it on people with healthier immune systems. I keep wondering if Mepron causes more side effects than listed.
I do know it can cause flu like symptoms -
Hope this helps. I've been battling the same issues. Will talk to my doctor Friday about alternatives too, as I don't know if I can be this exhausted and function for months on end, especially with three young boys to raise.
Hope you find some anwers and comfort,
Marcelle
Posted by sixgoofykids (Member # 11141) on :
If she's herxing that bad, ramping up is probably a good idea, but I would still push to getting to the full dose. I would talk to the LLMD about her trouble.
I took 2 tsp. twice daily (125 pounds) for 10 months. It gets easier as time goes on. My first couple months I was so weak I needed help walking .... but I was pretty sick to begin with. After each herx I felt a little better than before, so she has that to look forward to ... but her first couple months will be tough.
It's worth the pain .... it's a good medicine!
Posted by groovy2 (Member # 6304) on :
Hi All--
Yep Babs herxes are Very Ruff- they can start when first starting Babs meds- or it can take several months of treatment for the herx to start --
For me the herx started after about 4 months into babs treatment-- then Wam - Bam and Pow -
I herxed for about 8 months solid -Ouch But is was something that I had to go threw to get better- and was worth it -
At this time None of the Babs treatments are Herx free --
A small amount of people dont herx at all but just start feeling better - mostly men tho -
the Lower dose of babs meds may be OK -
But - One thing that is SUPER Important is Not to Stop taking Babs meds --
For the BEST effect your Babs meds Have to be taken Contentiously -- No Stops - No Breaks -
You Will Loose Any progress that you have made in your treatment when you stop --
Babs meds work Best the First time that they are used -
Starting and stopping Babs meds will Almost surely doom you to treatment failure -
Babs is Super Adaptive and will use the meds break to change and become Resistant to further treatment with those meds -
You Do Not Want this to Happen --
It is going to be Hard - Painful - and Sure No Fun but I have to say it was worth it to me --
I went threw All of this 100% alone - I had No One to do Anything for me -
I had to do All of my shopping-cooking-cleaning health care needs- Doctors Appointmments pay bills-- Everything 100% by myself -
I also did all of this with out driving a car even one time - I rode my bicycle or rarely took the bus --
I live in Texas and Everything is far from my house -8 mile trip to the store- pharmacy trip is about 25+ miles
If I can get threw this -- You Can Too --
You just have to- Make Up Your Mind - that you are going to Do what It Takes to get your health back and Nothing is going to stop you -
Hope this helps you--Jay--
Posted by Tracy9 (Member # 7521) on :
Thanks for all that info, Jay. It is alarming to me having just started and stopped Mepron and Zith twice; I hope I didn't do any damage. It was due to insurance approvals; but the first time was three weeks on, but only taking it once a dayish, then about a month or more off, then 10 days on, 10 days off.
Now I am back on, just starting today. I will stick with it for sure.
I am wondering; since I have made a decision to take a leave from work, can I try and take as much as possible while I have the "luxury" of being free to herx? I'm thinking of asking the doc to give me more than one teasp twice a day while I can do it. I am going to take leave Dec 15 - March 1st. I'm just way too sick to work.
I am hoping and praying that in that 2 1/2 month period I can make some real gains and go back to work functioning again.
Posted by groovy2 (Member # 6304) on :
Hi Tracy--
Yep when I stopped taking mepron it was not by my choice ether - and it Greatly damaged my recovery --Ouch
You should see if your doctor will write you a script for 3 or 4 teaspoons aday -
That way you can ether take a higher dose or have more mepron for a longer time--
You can also get mepron for Free from -- Bridges to Access-- google it
You do not have to be completely broke to be accepted -
Your doctor HAS to write you 2 scripts for it -- and make One phone call -
You an get mepron the same day the doctor makes the phone call-
It takes less than 5 minutes on the phone-
If you want more info about it PM me --
Also Bactrim DS works Very Good for babs-
It is Much Much cheaper than Mepron and doctors will write scripts for it easier because it has been around a long time -
It made me Herx Big time - but it worked very good --
You have to drink tons of water when tacking it--Jay--
Posted by Ellie K (Member # 12056) on :
It's really interesting to me that your wife's herx started 9 days in-- mine too! And it seems like this has been the pattern for others.
I am about 3 weeks in. I started at full dose (2 tsp/day), as my LLMD insisted. It's no fun. Many times I thought I would go off, at least for a few days, but so so far I've pushed through.
So far, my worst symptom is nerve pain. I'm also experiencing profuse sweating (of course), headaches, air hunger (just recently), emotional turbulence (to say the least!), sense of disconnectedness w/ reality, trouble speaking, freaky nightmares, ear pressure, the list goes on!
I'm afraid I don't know much about dosing. I am a believer that each person knows their own limits-- while it's probably "ideal" to push through w/o any breaks at maximum dosage, we are human and sometimes the suffering can become intolerable.
If she hasn't already, I would urge your wife to talk to her LLMD, GP, or a pain doctor to make sure she has the pain/anxiety/sleep meds that she needs to get through this.
I just got a script for a good opioid, as well as Lyrica. Very excited to try it out. If it weren't for Norco (what I'm on now), I know I would have quit a long time ago.
Best wishes to you and your wife. I know herxes are not easy on the caretakers either! We're all in this together! Posted by von (Member # 8333) on :
I read in one of the Dr Burascanno papers about mepron herx. He said for some reason 4th day and 4th week often the worst. I read this well into my mepron treatment, so I looked back on my calandar (I'm a charting fool) and sure enough this was the pattern for me.
The fourth week is kinda strange, and he thought it might be some unknown effect on helping with lyme treatment, since lyme is the one with that type of cycle.
Treating the babs part of my illness has made some of the biggest progress toward health.
Hand in there.
I am feeling so much better after 5 months of mepron and art, I am wondering if treatment is close to over..... but I am scared to quit. Don't want to go back to pre mepron for nothing!
MIGHT WANT TO ASK doc if you should be taking the artimisin along with mepron. Espically if your not at the full dose. Don't want to develop a resistant strain.
Posted by von (Member # 8333) on :
Mepron 4 month treatment at least because the red blood cell life cycle is 4 months?
Von
Posted by Tracy9 (Member # 7521) on :
Thanks Jay; I have been back on the Mepron now for almost a week I think. I herxed through the weekend.
My LLMD has suggested penicillan shots as a next step if needed. I'm severely allergic to Sulfa drugs, so Bactrim wouldn't work...but it's good to know the alternatives.
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