If it's making you feel that bad, it is killing something. I felt that bad before starting Mepron, so I didn't cut back at all with the dosage, but I know others who have.
Get plenty of rest.
I felt progressively a little better after each monthly herx, which was every 24 days. Sounds like you might be having that herx. The first one, I couldn't even walk to the bathroom without help it left me so weak and off balance.
Maybe the doc will give you something for the pain?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Our doc says to "look out" for the three week herx on mepron. That's what I suspect. I'd call your doc.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i was the same way on mepron. i am hypoglycemic and it put my blood sugar in the 40's. i was also told to do anti yeast diet at the same time. i lived on the couch -got up to eat the "right" food and go to bathroom and take meds. that's it.
i lasted two weeks. later...when i began to be able to think again, i realized what a dangerous place i had been. alone...out in the country...living with my blood sugar in the 40's. the doc had said i might feel bad...so i didn't complain -just stuck it out. but it was dangerous.
if you are hypoglycemic be sure your doc knows before you go on mepron and make a plan. (it is in a strong sugar base)
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Yikes! Mepron has a 3 week herx!? That means I started it 3 weeks and 4 days before I leave on a cruise. How long do these herxes last?
Wait--I just searched mepron and compiled a list of people who were on it, and there was quite a mix of experience. There were some who had no trouble on it, and some who felt bad for 6 months on it.
I feel like I just tossed the coin in the air, and when it comes down, I'll be stuck on a boat. I hope I have a good time, and not a nightmare.(So far, I don't feel different from when I started.)
I sure hope all of you who are having a bad time get a break soon. Who knows, I may be joining your ranks at any time. What an illness. Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Daisys- I will kill myself if I feel like this for 6 months!
Sometimes I feel that I really am just dying and the doctors "mis"diagnosed me.
I think you would have felt the mepron nightmare by now.
A cruise-how wonderful!!!!!!
I feel like I am losing my mind! I would really like to detach my head from my body.
To top it off my husband just found out today that he needs surgery on his right ankle and will be off his feet for 6 weeks.
No driving,etc.
Since I am virtually useless around the house at this time and can't get past my deck I feel soooooooooooo bad that I am sick and can't take care of things.
My 20 year old daughter will take up a lot of the slack.
She is coming home from college today.She is wonderful but she has her own 20 year old life.
Once again such guilt and sadness that I can't seem to feel any better...
My friend just came with groceries and ginger tea...
Thanks again for everyone's support!
I swear-I am usually an upbeat person but this disease is totally depleting me!
Laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
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posted
I just caught that comment by Six: "monthly herx, which was every 24 days" which would be the day before I go on the cruise. Six, how long dose that herx last? I'm starting to freak out here. (Yes, cruises are wonderful unless you need to be home in your own bed!)
Laurie, I believe it's really important for 20 year olds to have important responsibilities, like helping out in family crises. My opinion, but I think it will benefit her in many ways to be the strong one that others depend on--just for awhile, of course, and then go back to her own 20 yo life a little bit more confident and mature.
If you don't think you can take it, please let your doctor know. He probably has lots of options, and just needs to know which one works best for you.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Laurie - it is worth it in the long run. I had horrible herxing forever actually on it - my first time around.
Was so dizzy and couldn't stop crying. I had to go on antidepressants bc of it.
After I went off (prematurely after 3months) I felt better than I had felt since becoming sick. My dizziness was almost gone.
Now I am on a second round and have been on it since August - yessirreee August. I do not have dizzy herxes anymore. Mostly a low grade depression / anxiety / apathy. I am also using artemisinin, zith, plaquneil and heparin.
I want to get every last bit if the babs this time as I think it is much more of a player than I originally thought.
The herxes get better after some time - could be months. In addition, for me, with the mepron, it is one continuous herx that did not have monthly cycles. It really started kicking in after a few weeks on the mepron. But, like I said - it is well worth it.
Hang in there!
Posts: 588 | From Rhode Island | Registered: Jun 2006
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posted
Yes, I really have six goofy kids. My oldest is 20 and just got home from college .... she's very willing to help out when she's home. She knows this treatment is hard for me.
My first Mepron herx lasted probably five days ..... that's a guess. I actually felt slightly better when I first started it (that's not saying much!), then herxed and felt worse than before treatment.
I was too disabled by Lyme to have gone on a cruise even before Mepron, so you might not be able to judge by how well I did on it.
Oh, I was just talking today about how BORED I am with all this. i used to be so active in many things, now I do nothing, so even when a good day comes around, I still have nothing to do. That's one of the hardest parts of it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I was on Mepron a while ago but I never had a bad reaction to it.
I remember as a "side effect" of Mepron (not herx related) that it could cause severe nausea.
Didn't happen for me, but I remember I tried to prepare myself. Someone even gave those anti sea sickness wrist bands (speaking of cruises ) in case I became nauseous from it..
Good luck
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
I started Mepron 3 weeks ago as well (4 tspns a day with the zith plaquenil and amox) and I feel HORRIBLE TOO! My neckache came back which comes and goes, Im nauseous (which usually thats the ONLY symptom I dont have) my brain fog is up there, and I am laying down 90% of the day compared to about 30% before starting it) Dont have any advice, but trust me your not alone! It sure does stink but Im gonna rough it out. I think you should too. We'll get past this; we wont feel sick forevor! Posts: 370 | From NJ | Registered: Dec 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Isn't nausea a symptom of babesia?
Maybe a herx reaction too?
My first mepron herx lasted two whole weeks. Had 4 or 5 days of okay.
Then Bam! Babesia herx again. And again and now I am in a lesser one again.
I am hoping they get less frequent and less intense as time goes by.
As for a cruise......I used to be able to go deep sea fishing in 10 ft seas.
No problem. Now if I just watch a boat bob in the waves I feel sick.
Hope you enjoy your cruise.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I am only taking 1/2 tsp 2x/day because I herxed so hard, I didn't shower for 8 days...didn't go anywhere, wouldn't eat, etc. It was awful! And, that was only on 1 tsp 2x/day!
So, you might want to call your LLMD and ask if you can lower your dose for a little while. My LLMD has no problem with my staying at the dose I'm on, because we're really focusing on detox and I'm about to start IV abx.
Even if you took 1 tsp 2x/day, that's a "normal" dose. It's not a low dose... so you wouldn't be losing much ground as far as killing the bugs, IMO.
Posts: 215 | From Student | Registered: Oct 2007
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My LLMD said I could go down to 1/2tsp. twice a day.
I don't know how long I have felt like this-maybe since Sat.
Someone told me Mepron is like chemotherapy for Lyme.
Laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Laurie -- so sorry it's hitting you so hard.
But think of it this way:
It's killing bugs in your BRAIN!!
At about two weeks in, I thought I would really just die from the head pain. And up till that point, I thought "hah -- piece of cake, what's all the fuss over this stuff?"
Hah -- NOT!!!!
And if you think THAT'S something, try adding Artemisinin!!! That'll REALLY knock your socks off! In fact, most LLMD's add it into the mix.
Please hang in there; it WILL get better. You won't feel this way continuously for six months.
Are you taking it with enough fat? I.E., a giant dollop of peanut butter or something with your dose? Do.
Pass the yellow goop.
Remember -- the worse you feel, the more convinced you need to be -- the babesia WA-1 is the real thing. Those headaches are not "all in your head." Err, well, they ARE, but not for much longer... :-)
Do whatever you need to do to just get through it, and think of the better days to come. They WILL!!
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
thanks..yeah nausea is a symptom of babesia...but I havent had it in awhile since starting the cedax last summer and even when I did it wasnt that bad but now its back with the Mepron.
Yes, I think Im gonna go down to 3 tspns a day rather than 4. Maybe that will help with the herx. My Dr. wants to add IV gluthione (sp) in next month so hopefully that will help with the detoxing too. Thanks..
Laurie: I cleaned out my mailbox Posts: 370 | From NJ | Registered: Dec 2007
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For me the fourth day and the fourth week was the worst when starting mepron. Not a ton of pain, but SEVERE fatigue.
I am chimming in to say that of all the treatment that I have had over the last 2 1/2 years, Mepron made the biggest difference. I just recently stopped Mepron after 8 months, and it was actually hard to let it go for fear I would go back THERE.
I had lyme, bart, HME and WA1, so I have been on several combinations of drugs.
Wow, I just wrote HAD. That is good. Truth is I am not completely recovered.......but I am feeling like I am not just a sick person. I can live with this. Von
Posts: 258 | From Washington State | Registered: Nov 2005
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Guess what Michelle?- I am supposed to start the Arm. today!
I feel like my brain is frying!
I am going to literally drag myself out of the house today to see my mom.My daughter is driving.
I feel so bad that I am putting her through this...
Thank you!!!!! You are all such wonderful,caring people...
Laurie
`
Posts: 256 | From long island, new york | Registered: Feb 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by laurie sm:
Guess what Michelle?- I am supposed to start the Arm. today!
Laurie
Darling Laurie -- a tiny word of advice....
DO go slowly.
If you are already feeling like death warmed over...
AND...
Your head is already exploding.
Add Artemisinin, and watch the fireworks multiply even WORSE!
Now, what this is doing is actually increasing the effectiveness of the Mepron/Zith (clinical/blood studies actually prove this).
But does your brain appreciate any of this? Nooooo!
My point? PLEASE go slow. I think this is especially important for people with WA-1, an evil, evil, nasty bug.
I felt like I was actually going to die. For about a solid week. From the intense pain in my head. I could only pace back and forth, holding my head. Pain meds could not help.
But of course, I did not die.
Don't be afraid to ask your doc if you can back down, then creep back up on it. Don't be a hero!!! The meds DO work, but make no mistake -- they HURT!!!
Hang in there. And post often so we know you are hanging on!!
Hugs, and happy mother's day!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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My oldest is 20 and just got home from college .... she's very willing to help out when she's home. She knows this treatment is hard for me.![[Frown]](frown.gif)
That's one of the hardest parts of it.![[Smile]](smile.gif)
) in case I became nauseous from it..
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