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» LymeNet Flash » Questions and Discussion » Medical Questions » Tell me about your experience on Mep/zith. I feel so sick!!

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Author Topic: Tell me about your experience on Mep/zith. I feel so sick!!
Jessiep
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Ive been on babs treatment just over a month. Have had maybe 3 decent days. Wondering what others experiences have been. Really, really want to feel better. [Frown]
Posts: 342 | From Philadelphia | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Babesia treatment was the absolute worst for me. Terrible herxes.

It may take awhile. Hang in there!! [kiss]

Have you read Mepron Blues?

--------------------
--Lymetutu--
Opinions, not medical advice!

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dbpei
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Sorry you are having a tough time Jessie. It is perplexing how one drug combo can cause major herxing for some and make others feel better.

I started to feel better when starting babs treatment after months of being miserable on bart treatment (no more flu-like feelings, no more nausea...), but my tinnitus and head symptoms worsened.

The head symptoms (vibrating, strange burning and crawling sensations on my scalp and other body parts, tinnitus, hearing loss, gritty sound when I turn my head, some brain fog and being emotional over little things) have been my worst symptoms.

Some of these got aggravated with babs treatment. So I feel (HOPE!) that the current treatment for babs is probably going after what caused many of my symptoms.

I wish I knew how to advise you. I have read that after a month or two of babs treatment, some have really turned around. Hoping that will happen for you.

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jupiter76
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What does babs herxes feel like for you?
Usually herxes are fluish, with headache or head-preassure and thirst and sometimes weekness and sweating. But on clinda/Malarone I just felt bad, nothing from the above. similar to taking folic acid which I dont tolerate.

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nonna05
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I can do Deplin (folic product)

But I just had a major flare of this,,

Doc said not Herx,,,If it was my body could not take it for long,,,,,

Even though I thought I was going to ER (we didn't) ,

Did the closes thing I had/have like a AuntyLynn drink, when I could lift head,,

Anyway ,He thinks this is a good sign that I got pass 3 days of a major hit,,,,,

Support body and keep going,, ,Thinks it could have brought down the LD load,,, That would be great,,


What to do besides lemon water to pull crap out and support the easiest way??/


Tried to eat dinner and got about a 3rd down,,,

Major heat inside,, like I need icy drink or magnum etc,,,,,Hot in side, dry, mouth dull...


My head was hurting for 2 days,,,I took A 299 Diflucan and felt better a few hours later.. Take care,,,PLEASE watch out for this West Nile stuff going on.....


I asked my daughter to spray kids,,,she's in the pass me over mood,,,,to I asked the one that was in Hospital 14 days..

You'd think ,after the questions about me an all the warning;d, even there, it would just get done,,

I hope so and she just doesn't me to say it , mostly over once,,

To bad they don't listen or acknowledge I spoke to another human and a general ugg ! would at least let me know info got to them,,

Anybody going threw this with kids????

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nefferdun
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I read it takes 3-4 weeks for mepron to build up in your system so the worst herx is around that time. My first month of mepron was miserable. Most people have a hard time adjusting to it. After 3 months I began to feel better and better.

I was depressed, could not think clearly at all, extreme fatigue and headaches. I actually wound up in the ER a week after starting mepron because of the side effect of irritation of the vegus nerve which can mimic a heart attack.

Yes, other people can be very disappointing in their general apathy to us being sick - even adult children can be so absorbed in their own lives that they just don't have the time to bother about yours.

Hang in there.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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Jessiep
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I feel weak, anxious plus all my buzzy feelings are in
Full force. My legs also feel weak and heavy. I know I have babs by symptoms and also FSH was positive. So I plan to push through if at all possible, but this is miserable. Have been on it about 4.5 weeks now. Had a couple good days last week, then got a cold and havent felt ok since. I have been telling myself must hang in for at least 3 months before expecting to see anything get better. This is gonna be a looooong 3 months.

Also still have Lyme and Bart, so just f%^*ing miserable all around!!! Thx for replies everyone. At least I know it's not atypical. [Frown]

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Lymetoo
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Mepron Blues
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/89042?

--------------------
--Lymetutu--
Opinions, not medical advice!

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dogmom2
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please read keeblers posts on protecting your ears. I got tinnitus while on this combo for only 10 days,and the tinnitus never left.
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AuntyLynn
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Wow Nonna! I was wondering why we hadn't heard from you for a while!

I hope you are feeling better now?

Glad to know you were able to keep a little strength up with something close to the Adelle Davis recipe for "fortified milk"!

(Folks, this is basically an egg nog, with brewers/nutritional yeast, extra powdered milk, and calcium and magnesium added.) But even a protein smoothie (preferably with the yeast, which is powerful stuff), would likely help in situations where people are too weak to eat.

Please just hang in there, Nonna!

Lemon water, Alka Selzer Gold, even Vitamin C could help with the detox. I'm glad to hear your doc thinks this is "progress."

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nonna05
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Aunty,,,Progress as in hit by" A Mac truck" instead of train [Eek!]

I knew I forgot something on that drink... powdered milk.

There's so much powder stuff in mix I guess It just seemed like everything was there.

Any good way to test egg for Salmonella.. I'm going to add some Cinnamon and a touch of fresh Ground Nutmeg.


Think there was something different or special in kind of dry milk

I asked a couple times ,",BUT me no see yet." Wonder if I can order it like the rest of my life, Amazon .come


I have to get well enough soon,,,to try and bring a buck or two in...

This is very heavy $$$$$$$$$$$$$ illness ,

But feeling like you were sent out to pasture by all that's left in life is so painful...
[Roll Eyes] [bow]

Neff:great job reading my remark...Sometimes I re-read.//re-read and it's still amazes me what and how I have to decoded my wording....argh [rant]

The tinnitus is a huge problem..

Like we need one more supplement in us,,,,,BUT, there is a natural formula for this condition at Vitamin stores.

I got mine when I had ear infection ( part of this, unknown) and they also tried trazodone to help sleep.


I said I think the infection is not all the way done,,,they said try and stop trazadone,,

So against my better judgment I went a couple more days testing TRAZ..

Been ringing for almost 7 - 8 years. [confused]

Now to go read Mepron blues...So appropriate considering the color of these 4 walls....

Take care all...Nonna

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AuntyLynn
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Cinnamon and nutmeg would be great, Nonna.

Best way to avoid salmonella, WASH the egg before you crack it. Sam clings to the OUTSIDE of the shell!

And hey, there's nothing wrong with adding some ice to the blender! (I'd say ice cream but there's that sugar thing.)

Was the Trazadone helping you to sleep??

You are One DETERMINED Lady!

So sorry you are going through this. Hopefully, you will pull through feeling better, on the other side of this trial.

Sending healing prayers!

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Jennifer70
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I tried mepron/zith combo twice...i could only last about four weeks. I was in constant pain and fatigue was ridiculous..i could barely walk accross the room without collapsing in exhaustion.

I had to go off from the depression....my mood sank so badly I felt like i was losing my mind. within days of going off it lifted alot and getting better every day...but some days i wish i could have stuck it out.

Praying you have an easier time of it.

--------------------
Psalm 119:50
My comfort in my suffering is this: Your promise preserves my life.

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Jessiep
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Thx Jennifer. I am very anxious, sore, tired. I really
Really want to beat babs. Otherwise, then what!? I have to get better.....no other choice!

How are you overall?? Did you take something else for babs?

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Jennifer70
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yes my heart goes out to you..we're in the same boat....i experienced alot more air hunger too along with your symptoms. I want to treat babs so badly also..my llmd told me to try artemesinin. So im going to try that for a while.

I did try cryptolepis for a while also..i def herxed from it but it is hard to get consistently..they run out alot.

I tried rifampin which i also couldnt tolerate..ive done two rounds of coartem where i felt great for about a week after. Im going to do two more rounds of that.

--------------------
Psalm 119:50
My comfort in my suffering is this: Your promise preserves my life.

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annxyzz
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How often does this combo work ? It seems I read a lot of posts indicating it makes people feel awful and that they relapse quickly after stopping it .

Does it have a record for a high number of cures ?

--------------------
annxyzz

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Spindleshanks
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I did it for 5 months and felt terrible. It raised my liver enzymes about double the normal but I stayed on it because they remained stabily elevated.

After stopping I felt sooooo much better. I am not sure it was really helping or not but my liver returned to normal and my strength has improved. I think it was toxicity really all along.

Make sure your have your labs done.

I hope you feel better.

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Jessiep
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Interesting. Are your babs symtoms gone??
I had terrible air hunger--which I still has but I think I'm having it less often. More inportanly, I think I am having trouble
beating Lyme and Bart because of the babs. My plan is to knock that one out so I can focus on the others. I was lucky to have a positive fish/pcr for babs.

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WPinVA
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I did Mep/Zith + Art for 3-4 months and felt pretty awful the whole time. I know it was from that combo because I felt much better on my "off" weeks, when my doctor had me take a break from abx.

It helped a little to know I had a better week coming but was also frustrating to know I didn't have to feel that way!

Then I got a yeast infection and he took me off of Zith and reduced the dosage of Mepron. I felt a LOT better, but then eventually had to go off of Mepron altogether because symptoms of depression set in, which is a side effect of Mepron.

So.... for a while I wasn't on any babs treatment but my symptoms started coming back so now I'm on Art and Cryptolepis. I'm not sure what's ahead for me. This is keeping my symptoms at bay but I suspect it won't be enough to wipe it out.

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AuntyLynn
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From what I read yesterday, COARTEM is the pharmaceutical product containing Artemisinin EXTRACT, and another longer acting anti-malarial drug.

It is highly effective in treating the most deadly bacterial form of malaria.

With all the expense, "gag factor" and side effects I hear about Mepron (& Zith), I wonder why more LLMDs don't just go to Coartem?

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gmb
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Yup... Mepron is pretty tough to take. I'm on my second round. Minimum tretament should be 4 to 5 months to cover the 120 day life cylce of a red blood cell. But most all here take it much longer

First time (May 2011 thru Sept 2011)it was hell from weeks 4 thru 9 then gradual improvements, with less muscle pain and stiffness, and some improvements with memory.

In Sept I switched over to hit bart, but LLMD said mosty likely we would be back on Mepron again.

In Feb 2012 when spontaneous bruise marks started to return randomly to my arms and legs we started back on Mepron, then kicked in Bactrim DS.

In June we stopped Bactrim (possible contributor to increased gut issues), and doubled the Mepron dose to 2 tsp twice a day. That really made me feel like crap. I was having new bruises appear almost daily. Not sure if this was from Mepron killing Babs, or Babs was killing more red blood cells.

During the past month the bruises are less intense in color and size. And I felt pretty good thru this past weekend and especially today.

Currently I'm on IV Rifampin (since last xmas), Zith, and Mepron... with Actigall, Atenolo (for high BP) and Gabapentin (for neroprophy and sleep aid)and baby aspirin.

Plus the rest of the supps (Magnesium, Fish Oil, D-3, B-12, Vit C, Ginger Root, Milk Thisle, VSL#3, and Floristor) to reduce inflamation of the the wallet. I detox with lemon water, ionic foot baths, Cold Laser therapy, and excercise with yard work.

LLMD is holding off cyst busting with Flagyl or Tindamax till I'm finished with Mepron. Pretty sure we'll do a round of Coartem at the end.

Hang in there....

gmb

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Spindleshanks
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I don't think it is gone but maybe less of an issue? I did have this electrifying pain and internal thigh bruising disappear. The shocking pain is back.

The anxiety while on it was intense pure panic and sense of doom.

I have liver issues so am not sure if that made it worse. I have a freind that had major improvement on it and then Malarone.

I hope your feeling better.

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mlg
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I was okay on it for months but then felt pretty sick. I had a kidney infection and they had me off everything and stated me on Cipro then off and then on Zithromax. I also got side effects of shortness of breath and the blues.
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