My doctor wants to treat me along with Biaxin XL and Art) for 4 months.
Do you think this is long enough or should I "beg" to stay on this regimen longer?
I have had Lyme, Babs and Ehrlich. for 12 years.
Thanks so much!! Jackie
Posted by CaliforniaLyme (Member # 7136) on :
See how you are feeling- for some people it is long enough, for others not-
The longest I have heard of someone on Mepron is 2 years (me). Everyone else I know was much quicker-
I find it best to take life day by day!!!
Posted by justwondering (Member # 12813) on :
Hi CaliforniaLyme,
For the first 2 weeks or so I felt really good. I told everyone Mepron must be a miracle drug!
But since the end of last week I have felt very achy, more fatigued, extremely emotional and forgetful and have been running a fever on and off.
Must be the typical herx reaction...
I am just really worried about going off 3 months from now and having a relapse.
2 years for you must have been a very long time. Thank God for our insurance - can you imagine having to pay out of pocket for Mepron? Such a shame...
Are you free of babs symptoms at this point?
Thanks for your input:) Jackie
Posted by yanivnaced (Member # 13212) on :
My wife's had some ups and downs with Mepron too.
She started Mepron Nov 22nd. Felt great the first 5 days then on day 6 to day 10 her symptoms flared up.
Symptoms subsided until yesterday (day 27) when things flared up again. She felt like she was going to faint when waking up in the morning. This was like a herx she had early in her lyme treatment on doxy.
So, 28 days into treatment, it looks like she's still herxing. I think for her it might take several months of Mepron.
From what I've read adding Artemisinin helps speed up the fight against Babesia. She'll be adding in Zhang Artemesia next week.
CaliforniaLyme: did you use any Artemisinin during your treatment?
Posted by justwondering (Member # 12813) on :
Sorry your wife is not feeling well.
I chatted with you about her a couple of weeks ago in a post, where I boasted about how great I was feeling! That was short-lived...
I think it would be right to add the Art. From what I have read it is very powerful.
I take Art 3 weeks on and 1 week off at 3 pills a day.
I hope your wife finds relief soon. I am sure she will have great days ahead and it will all be worth it! Maybe I should prepare myself for the herx to last awhile...
Thanks so much for the input:) Jackie
Posted by CaliforniaLyme (Member # 7136) on :
Yes- I have been babs symptom free for years & years now!!!
Posted by yanivnaced (Member # 13212) on :
justwondering: this disease seems to be nothing but ups and downs. Here's a graph of my wife's progress since starting treatment in August. Hope you start to get relief soon too.
The graph moves up 1 notch every good-day and down 1 notch every bad day.
Posted by Tracy9 (Member # 7521) on :
HUSBAND OF THE YEAR AWARD, HANDS DOWN!!!
This guy GRAPHED his wife's progress!!! Holy cow! What a devoted man!
BTW, you really ought to check out www.lymelog.com. It graphs it for you!
Posted by yanivnaced (Member # 13212) on :
Thanks Tracy9:
Can those who recovered pls chime in?
Was their recovery similar to the above graph?
Do most people have more steady improvement?
I feel like my wife's stuck on a roller coaster ride.
Calif: How did you get better? Was it gradual or did you suddenly wake up all better one day?
Posted by justwondering (Member # 12813) on :
Wow, what a fabulous husband you are!
Your wife is beyond BLESSED to have you.
I am going to tell my hubby about you. Maybe he'll give up fantasy football online for the night and devote himself to learning more about lyme! (not a chance)
CaliforniaLyme, it is inspiring to know you are better. Must be a great feeling!!
Thank you:)
Posted by von (Member # 8333) on :
Not quite recovered but:
Lyme treatment for 2 years then added mepron and art a few months ago. On the forth day I didn't move the whole day. Then I was OK (just extra tired) for a few weeks.
The forth week week I was extremely fatigued and had a low fever, which has now been an intermittent symptom.
Just finished my 6th month, and am hoping that I will be done soon.
Who knows when to stop treatment? When is the benefit more then the risk?
I have heard 4 month minimum. I still have little red spots that come and go.... still a babs herx?
*** I have to say though, Mepron has made a huge improvement in my health.
Von
Posted by lucy96734 (Member # 8372) on :
I did 7 months of Mepron and Ketek and made steady progress. I think many people respond differently.
I had been hitting Lyme only for 2 months prior to starting Mepron.
Most of my treatment (22 months of abx) has been pretty steady progress. I've had a few plateuas and a few sporadic bad days here or there.
I am now on Cowden and Zhang's art only and feel good.
Posted by justwondering (Member # 12813) on :
Thank you all!
It sounds like it varies by person to person.
I guess I will try to go off after 4 months.
If I am not free of symptoms, I can always go back on.
Glad everyone is in the process of recovering!
Thanks a lot...
Jackie
Posted by CaliforniaLyme (Member # 7136) on :
Yes- Babs treatment for me was FULL of looooong plateaus where I didn't seem to make progress anymore, then would regress a bit then get better, then plateau, over & over with looong plateaus- Artemsia definitely revved it up a notch!!! Stopped going backwards as often and then no longer at all-
Symptoms would re-emerge here & there & I would feel like I had made no progress at those times- was very FRSUTRATING!!
Posted by CaliforniaLyme (Member # 7136) on :
p.s. I agree- husband of the year!*) That graph is AWESOME*)!
p.s.s. And it is lovely to be symptom-free- I am completely symptom free and it is a luxury!!! I know how lucky I am now- never did before I got sick-
Posted by h8lyme (Member # 11765) on :
can you guys post a link for a safe place to order the artemisinin? and how much do you guys think is safe?
I'm currently on mepron/azith, but wouldn't mind bumping up my progress. I will of course let my doc know before doing so.
Thanks in advance.
Posted by savebabe (Member # 9847) on :
I am up there with CL, it has been almost two years I have been on babs meds.
Babs can be very had to treat...Once you feel you got it, BAM, it hits you again.
Just make sure you are symptom free for at least a month before stopping treatment.
Posted by lucy96734 (Member # 8372) on :
It was suggested by my LLMD.
Posted by justwondering (Member # 12813) on :
CaliforniaLyme,
Sounds like your experience was a lot like yanivceds(sp?) wife.
It probably helps him to know that her progress (or lack of) sounds pretty normal.
That is a good guideline, too, being symptom free for at least a month before ending treatment.
Babs symptoms are AWFUL, aren't they? I feel like if I can at least get rid of this debilitating fatigue, my life would change dramatically....
Savebabe, I get the BEST deals at Vitacost.com!
They have ALLERGY RESEARCH GROUP brand ARTEMISININ, which is what my doctor told me to order.
Vitacost has it for sooo mch cheaper. Check it out!
Thanks everyone:) Jackie
Posted by char (Member # 8315) on :
My 13yr old son, who was very sick with babesia (and bart and lyme) took Mepron for 9 months with a 4-6wk break in middle.
He took teaspoon Mepron plus 500 Zithromax. He became just miserable on 2 tsp of Mepron. Like bad flu all the time. and angry-cranky.
He did well on the lower dosage.
His symptoms gradually receded. He is doing very very well. The muscle pain, heating up, fatigue, and overall misery is gone.
He has continued to improve this past year off Mepron and abx. (We had treated lyme agressively before the babesia treatment) We are still using supplements.
Anyway, he has pronounced himself well and is busy getting out to hang with friends, walking daily,(he had had pain walking to where he sat or lay all the time for yrs.), and going to gym on Saturdays with Dad.
His cognitive and energy is better every day!
We got weary of his taking the "yellow paint", but it did its job. Our dr. encouraged us to stay with it til symptoms were gone and this worked for us.
So some people take it a long time, but do get better.
Best wishes,
Char
Posted by justwondering (Member # 12813) on :
Hi Char,
That is fantastic about your son.
Sounds like he has his life back.
It must have been very difficult to see him go through that.
And you said he was cranky?
WOW, I have been a wreck most of the time: very irritable, crying a lot, anxious...
No fun, but stories like your son make it seem worth it!!
Thanks:) Jackie
Posted by von (Member # 8333) on :
Hey guys, I STILL DON'T GET IT!
At least 1 month without babs symptoms before stopping mepron I understand, BUT how do you tell which symptoms are from what?
Posted by tdtid (Member # 10276) on :
I'm not sure how to answer this question either. I have been on Mepron and Zith for almost 8 months now but have had either cipro or doxy tossed into the equation.
There are definitely good and bad days and I can't tell which med is doing what when you are feeling badly and which may not be doing much at all. I just keep my journal going in hopes that some of this makes sense to my LLMD.
I do think once this last dose of mepron runs out, I'll be done with that, but I'm far from symptom free, so probably just means it's time to shake up what I'm on. On the other side of the coin, I do know I'm MUCH better than I was even a year ago from so many angles, so SOMETHING is working.
We just want treatment going faster than it appears to go, I'm sure.
And wow...that graph you did for your wife, yanivnaced! Impressive!!!!!! What a devoted husband!
Cathy
Posted by justwondering (Member # 12813) on :
Von,
I don't know for sure, but
I think Babs is responsible for the profound fatigue, sweats at night and shortness of breath/air hunger.
That is according to my doctor, anyway.
She said once those things clear up significantly than she will go on to treat the Lyme itself aggressively.
Thanks all:) Jackie
Posted by von (Member # 8333) on :
Just wondering, Thank you for starting this thread. And thanks for letting me high-jack it! Very helpful.
Again, I am in my 6th month of Mepron. The fourth day and the fourth and fifth week were the worst....... and all the other weeks were better then I have been in years. (with the exception of last week.... the twenty fourth week)
I just had surgery three weeks ago, so maybe that brought the fatigue back, but I also got more little bright red spots.
I am afraid to quit taking Mepron, because it has made me so much better, but I don't want to over do it and hurt myself either.
So thanks for listening for my frusteration. I just don't want to relapse, and I was so disappointed to have increased old familiar symptoms again.
Cathy, I think I will go another month from now on Mepron, providing I don't have another bad week. And then I will 'shake things up' by stopping and see what happends.
Jackie, thanks also for saying the symptoms of babs again. My air hunger, chest pain and sweats are considerably down from where they were 6 months ago.
Of course I know the symptoms of babs, but the lines of the diseases are so blurred. Also I had H. pylori last year, and didn't know if chest pain/air hunger was from that or babs. (my well known LLMD thought it was from the h. pylori, because my babs test was negitive.)
Later I requested another babs test, which (thankfully) was positive..... and Mepron has been a huge help. So, I think, looking at it again, I guess I was right in insisting on being treated for babs.
**where would I be if I were one of those who have one of those strains that cannot be tested for?*** more years without treatment.
UGH!
Posted by groovy2 (Member # 6304) on :
Hi All-
At least 2 months symptom free is what is recommended before stopping mepron-
Babs symptoms- Low body temp- crazy heart beat - breathing problems -stiff neck- head ache - dark pee - Sweats - skin rash (small red spots-dots) ringing in ears
Symptoms worsen at night-
--Jay--
Posted by justwondering (Member # 12813) on :
Von, haha! I am grateful for all your input:)
Thanks, everyone, this thread turned out to be more helpful than I'd imagined!
