I think I could have a European Strain, I tested positive recently for Babesia for the FISH and the Babesia Duncani from IGENEX.
I am NOT responding to Mepron, I am not staying the same, I am getting worse, and that is bad news.
I know others have failures on Mepron, I had clindamycin and Quinine help me, the last LLMD had me on this but I feel he undertreated me, and now I am seeing a new LLMD, and he found I tested positive
for Babesia. I am thinking that this Mepron is not cutting it, I need possibly the Clindamycin and Quinine again, or the Azithromycin and Quinine or maybe the LLMD has something else to try, it is just the Quinine worked for me, but there were side effects, that is the only thing, bad side effects, and if i try the
Clindamycin and Quinine again and it fails, then something else may be wrong, but I dont think so, because the EMF sensitivity is back bad, and my breathing is not good,
I am SOOOOOOO dissapointed with this Mepron, I am to see the Dr soon, I am so uptight because my breathing, and I am getting worse, it is not a herx.
I have read alot on here about Mepron and Azithromycin and MOST herx like heck, I have not. I usually always herx, I herxed like heck on Clind/Quinine. This is odd for me, very odd.
Trish
[ 15. April 2008, 01:10 AM: Message edited by: Health ]
Posted by Melanie Reber (Member # 3707) on :
Good evening Trish,
How long have you been on Mepron and at what dose? Have you considered adding in Zith and/or Art with Mepron for a boost?
Melanie
Posted by lymednva (Member # 9098) on :
are you taking any abx with the Mepron? it doesn't work by itself. most take zith or biaxin with mepron.
i take it with biaxin and artemisinin. I think you need to add in something with it, but discuss it with your LLMD.
Posted by Health (Member # 6034) on :
I am on Azithromycin and Mepron right now. Have been on this combo for 18 days and things are getting slowly worse, my breathing is getting worse, and I am very worried. I my muscles are weak, I cannot walk 1/4 block and I am in bed most days, all day up to go on computer or so.
I did not get like this on the Clindamycin and Quinine, I only slowly got better, and after I went off this combo 1 year ago, I relapsed with Babesia 8 months later.
Here I am, I was told Mepron and Azithromycin are a better combo. WELL, that does not seem to be the case for me, and i heard some others had Mepron not work for them,
I want to hear from those that had Mepron fail for them, and what strain of Babesia they had and what got them well,
I will stay on this because the LLMD wants me on it, but if I go into emergency mode, I will have to get on something else, I am going to be talking to the LLMD in a couple weeks.
I am not on Artemissin, the LLMD did not put me on this, I think he has his reasons, I will be treating lyme soon while on Mepron, so maybe that is why, I read on here that some LLMD's do not want their patients on Artemissin, because
of some reason.
Trish
Posted by CD57 (Member # 11749) on :
Hopefully someone will come in and weigh in on this, but it sounds to me like it is working, and that you are herxing...some on here have said it took them quite some time to herx (day 24 rings a bell, one person said 6 weeks).
A lot of folks have success when artemesinin is added...could you consider adding this in? Powerful stuff.
Posted by hcconn22 (Member # 5263) on :
I just finished Mepron/Zithromax for 10-12 weeks. Had some up and down, but after about 2 months had a 3 week breakthrough. Pain in legs and cognitive issues improved.
Just switched to treat bart for 10 weeks.
One benefit of treating Babesia is that a good doctor can review your lab results to see changes in counts per thousand.
Posted by Geneal (Member # 10375) on :
Hi. I did malarone/zith and malarone/biaxin twice only to have babesia come right back.
I just started my 3rd month of mepron/biaxin and am coming off one of my worst herxes ever.
Like you, major increase in air hunger, balance issues, dizziness, etc.
I herxed initially around day 5 for a few days.
Then this last bout.
I should add in that I had major night sweats for the first 5 weeks on mepron/biaxin.
I am still getting night sweats but nothing like the first five weeks.
I believe there are a few people here who didn't herx until there 4th month.
I hope this does work for you. I think it may be too early to really know.
Your symptoms do sound like a herx to me, but you may want to give
Your LLMD a call and relate how you are feeling.
Hugs,
Geneal
Posted by sixgoofykids (Member # 11141) on :
I took Mepron/Biaxin/Art. At 18 days I saw very little progress ... and at 24 days I felt significantly worse. After that herx I started improving.
My LLMD normally starts people on Art after the first month of Mepron (from what I've heard), but I started it before I saw him so he kept me on it.
I know someone who took their child to see Dr. J in CT. Dr. J told him you MUST have artemisia to get rid of the Duncani. I'd try adding that before you give up on the Mepron.
I am still on babesia treatment, but made a lot of progress on the Mepron.
My LLMD is of the opinion that it takes at least a month to see how a person will react to a drug. Time will tell whether this is a herx or a real decline.
Hang in there! I felt as bad as you describe when I started Mepron.
Posted by luvdogs (Member # 9507) on :
Hi Health - Like six said, the herx for me didn't start until over 2 weeks in and then it got worse and worse.... until it got better and better.
I wenf off way too soon the first time - I couldn't handle the herxing after 3 months and stopped. I regrte that now.
It has made the most differene in my Lyme treatment.
I am now on mepron, zith, art, plaquenil and will be adding herpain.I have been on this for 8 months. Much of the time was wasted bc I was on mino which was cancelling the mepron out. I stopped the mino in December and th heparin finally started to work.
Taken with the tetracycline class, the effectiveness of mepron is greatly reduced. Be careful of that. We know that it is reduced with either tetra or doxy (can't remember), but my experience was that it was totally cancelled out by mino as well - which makes sense bc same family.
Hang in there. This is normal and the herxes with mepron are not normal ones. It could keep getting worse for a while now, and then slowly get better.
Plus it could make you very depressed ;(
Posted by Niere (Member # 14387) on :
Trish--I don't have any answers for you but I can absolutely empathize. Please know you are in my prayers.
Posted by sixgoofykids (Member # 11141) on :
Trish, I actually had a similar experience with Cipro and Levaquin.
I was put on Cipro for 21 days and felt great after the first few days. When I came off it, I steadily declined, so was diagnosed with bartonella based on my response to Cipro.
I began Levaquin, which is stronger than Cipro. The Levaquin made me herx for six weeks .... I felt worse than before I started it. Then I made great progress on it.
This could be what's happening to you on the Mepron. It might be stirring up more of the bugs than your previous combo.
Posted by Michelle M (Member # 7200) on :
Trish, I'm sorry you are feeling so low.
I did Mepron/Zith for a couple weeks after testing positive for babesia WA-1, a particularly rotten little strain of babesia.
I thought it wasn't so bad.
Then, on my LLMD's instructions, I added in artemisinin.
WHOA, BABY. Everything changed. I went downhill in a hurry, and stayed there. Just the worst herx ever. Exploding head. Etc etc.
But:
Then I got better.
Better than in YEARS.
!!!
I really hope that could happen for you, too, and that what you're experiencing might be the beginning of that. I know there's a study somewhere that indicates adding artemisinin to the mix increases the efficacy of treatment greatly.
I'm thinking of you, and sending a hug and hoping for a break for you soon!!
Michelle
Posted by Niere (Member # 14387) on :
Trish--I just remembered that someone here (sorry, I apologize, I can't remember who!) had suggested to me that I try lecithin for the air hunger. I had picked some up a while back but my air hunger had resolved shortly after so I didn't try it.
My air hunger came back yesterday and I just tried some of the lecithin--two tablespoons in a bowl of oatmeal. I can't believe it but it has really helped. Please consider trying it. I know even a little relief with this symptom is worth a mountain of gold.
I got my lecithin powdered at a local health food store. It's fairly cheap--eight bucks or so for a large container.
Good luck. My prayers are with you.
Posted by Alv (Member # 15192) on :
Add Artemisin.IRONICLY when muscle testing from teh bigining -my sons body did nto wanted mepron but artemisin.
But he had to stay on Merpon and Zithr and add Bactrim lately as per LLMD.
His sweats ( herx in the begining ) stoped.
I included the artemisin -this week -boy he start herxing again -after 10 months in that combo.
So Add ARTEMISIN -definitly and see before you change it.
it needs a boost.
Also juist learned ( came from the llmd -and test for babesia and shows that he does not have reactivity to babesia yet ) but he is strongly showing reacton to bartonella -and my son said lately that he is getting worst.
So keep in mind his body wanted artemisin all the time ( and he had been pulsing for parasites -Dr`s formula -another Dr ).
Is that the babs load is lower and Bart might be comming up and causes sweat and is bringing up the ugly head and makes him feels worst ?
MAYBE !!!!Just keep that on consideration.
Also you can not treat just Babs -YOu need a combo that treat LYME and BABS at the same time .Once you lower the load of one the other comes up .YOu can take SAMENTO for LYME -from nutramedix.
I have had bart treatment for 1 year still have it and -only after treatment in 1 year my anxiety and my breathing problems are gone --but my BLO is there and my babesia has not beeing treated yet !
I have been treating LYME and bart as the begining!
So just a thought for you to think all the posibilities!
Posted by pryorka (Member # 13649) on :
I didn't have mepron or artemisinin do anything for me. And I took a lot of artemisinin (1200mg/day). I tested positive by the FISH test and the WA-1 test had a low positive so maybe I have that CA strain. I just added flagyl and on the fourth day I started freaking out and getting a lot of nausea and air hunger. So I hope it's a herx finally.
Posted by jmo (Member # 13141) on :
I'm sure babesia is my main problem. I've tried lots of different combos. I have the CA strain... The only thing that works for me is a combo of malarone and bactrim. I also have the same reaction as you when I add in flagyl, but it doesn't make me feel any better than I did before when I end the 10 days of it. Of course I can't tell you what will finally get rid of it for good because I'm still trying. But in my experience mepron and art didn't cut it for me either. Even thought I still take art just in case. Try malarone/bactrim if you can.
Posted by stella marie (Member # 7216) on :
Health,
The 1st time I took Mepron along w/ other meds. The NP pulled off after one moth and put on a different meds for another co-infection.
I felt nothing but better and better since day 1 in regards to the above meds. It was just about as good as an ice cold beer on a hot humid day.
However after I was pulled off the 1st meds for for babs, I got worse and worse.
It seems I developed resistance to it since it was stopped then started again....a big no no for me and others I suspect.
It wasn't until the doctor tried me on an older drug 'lariam' did I get better.
I was on lariam and other abx.
I felt better w/in the first dose. That is after about 3 days after because it knocked me on my buttocks!!!
Hope this helps you. This message edited, if you have ?'s PM me.
[ 21. April 2008, 03:02 PM: Message edited by: stella marie ]
Posted by stella marie (Member # 7216) on :
Oh yeah ......I forgot, I have no freakin' idea what strain of babs I have/had.
The real icky kind!
Posted by tickbattler (Member # 14873) on :
Hi-
Sorry you are going through this. I have no idea whether you are herxing or not but I can tell you that when we visited Dr. J in CT with my son, I remember him telilng me that a few of his patients were resistant to Mepron. So I do know that it is a possibility.
Best of luck to you,
tickbattler
Posted by Amanda (Member # 14107) on :
I've been on mepron/zith/art/ceftin for almost 4 months.
After about day 5 of Mepron, woke up in middle of the night thinking I had gone completely wacko and takin a shower without noticing because I was soaking wet. Went through that for about 5 days. Then for 2 months nothing.
Now am having another bout.
So, could be that you gotta give the stuff more time. But, I think you should call and talk to your doctor regardless.
Babs herxs can be just as bad as lyme herxs.
Give you doc a call...you have every right to be concerned, it sounds like you are really suffering. God knows I'm not shy about being a pest...hell if it was me, i'd be sending friggin smoke signals!
Posted by Health (Member # 6034) on :
Thanks everyone,
I am SO out of it, my head, so I cannot make much sense out of all the messages from all of you so I will read when I feel ok. thanks
I am not going to add in artemissin unless the LLMD tells me to, I dont want to fool around, he must have a reason, maybe he will add it in later, I am not sure, I speak to him soon, I will ask him.
I see that most of you herxed in the first week or so, that gives you all a great feeling, knowing that it is working if you are herxing, I am not having this, I am not herxing like I did on other meds. I never had night sweats, I had some sweating before but not like all of you, the sweats were not really much.
EMF sensitivity is big for me, it is horrid, and I cannot work if I have this, because I work on the computer, but I have not worked in 7 years, but I still want to go back to work one day
hopefully, I hope I hope to work one day again.
Well, that is i, I cannot follow things that well now, thanks again, I will read later all of this, good info in here.
Trish
Posted by jenschasinglyme (Member # 11193) on :
I have Wa-1 also known as Babesia Ducani.
It took over 6 months to show improvement.
It GOT WAY WORSE before it got better.
I sweated more, got really really bad fevers.
The fevers took about 8 months to go away.
I have no more sweats or fevers.
I still test positive but my titers are down.
I still am treating, almost a year.
IT TAKES TIME. I thought the fevers, sweats, chills and nightmares would never leave. They have!!!
I am not well yet..but am getting there.
I know it really really sucks. It will work, to me a few months is nothing for the more resistant strain.
My LLMD who is the son of the man who created the IGENX test said a min. of 10 months for treatment of Duncani.
Hope this helps.
Hang in there.
Jen
Posted by WildCondor (Member # 434) on :
Are you on a strong enough dose of Zithromax and Mepron? if you have relapsed, then you have to raise the doses to 3-4 doses Mepron/day and 1,200 mg Zithromax plus Artemesia annua 3x per day and do that for 4-6 months! Usually when treatment fails, it was not strong enough, so double the doses! Clindamycin/Quinine is outdated and not a good idea! Clindamycin can cause life threatening c.difficile colitis and destroy your colon. be very careful what you choose!
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