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» LymeNet Flash » Questions and Discussion » Medical Questions » Mepron insanity

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Author Topic: Mepron insanity
Samlyme
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I'm just back from a trip to crazy town care of the mepron express.

I had been taking two teaspoons of mepron a day for two weeks with no problems at all.

As soon as I began the third week I woke up in the night sweating and had diarrhea and insomnia the rest of the night. This was on Wednesday.

Thursday, The next day I hadn't slept much at all the night before but surprisingly wasn't tired. I kept feeling the need to pace around at work, which I never do. My husband kept telling me I was shaking but I couldn't really tell. I started to feel nauseous after eating. And food had no flavor.

Thursday night I did not sleep at all and sat in bed agonizingly re experiencing in amazingly vivid details difficult and traumatic experiences from my past. I paced a lot too. And would randomly get up and stretch.

Friday I stayed home from work. I assumed that with two nights of no sleep I would be exhausted. Instead I continued to pace around and think about bad memories and feel insecure.

I was freezing. Any time I was not covered by a blanket I would start to violently shiver and my teeth would chatter. This was a problem because I couldn't sit in one place for more than ten minutes.

I would go to every room in the house hoping to settle into something but would immediately feel like I didn't want to be there and needed to go somewhere else.

I started to notice that the white tile and sink in my bathroom were tinged yellow, the same with my phone and iPad screens.

The skin in my nose became hot and inflamed. I couldn't breath at all through my nose.

I thought if I could just get some sleep that I could deal with this possible herx or side effects better. So that night I took three Benadryl and three Trazodone. Not all at once but after waiting a few hours I'd take more when nothing was working.

I got maybe an hour of sleep. I was still getting up a lot to walk around, do stretches, pat the dog who looked at me like "it's the middle of the night, what the hell are you doing".

I had rug like burns on my elbows from tossing and turning so much throughout the night.

Saturday I stopped taking the mepron. I still had violent chills, still paced, still focused on disappointments. My sinuses hurt, like I had a sinus infection. By the end of the day I was able to sit for longer. I watched a couple of shows on Netflix. And that night I actually slept for the first time in four days. Though I haven't felt at all exhausted through out all of this.

Today, Sunday, I'm pacing a little bit. I don't really know what to do with myself after having been so crazy this past week. I'm still shaking a little but not violently and I'm only shivering a little bit every now and then. I can still see a yellow tinge to things. I wish I was tired enought to nap the day away.

I'm pretty horrified that an antibiotic could effect me so deeply. On the up side the incredible dream like state that I went into where I reexperienced dificulties from my past gave me the opportunity to understand them more thoroughly with an adult perspective. I even remembered hearing things people said from other rooms and with hindsight understood now what the tone of their voice implied.

I have heard that mepron can be rough for for a number of weeks but there's no way I can handle that. I have to think it must be a bad reaction to the drug rather than a herx reaction. I meet with my LLMD on Wednesday and plan to discuss other options..

[ 11-02-2014, 12:06 PM: Message edited by: Samlyme ]

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Tincup
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So sorry you are dealing with such a mess. Mepron can put you on a roller coaster for sure, including an emotional roller coaster!

The good thing, yes there is a good thing, is that once through a herx on Mepron you should feel a good deal better. Often the first two month herxes are the worst.

Bad herx, some relief, then a month later another almost as bad herx, then more relief. From there typically the herxes get less each month.

Have you tried a warm heating pad to address the chills? Do NOT fall asleep while using one though, please be careful about that.

Have you tried detoxing with green tea (decaf), lemon juice in water, epsom salts in a bath, etc?

Sure hope you are feeling better soon!!!!

[group hug]

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Tincup
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BTW- Here is a link on herxing that may be of some help.

https://sites.google.com/site/marylandlyme/jarisch-herxheimer-herx

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Samlyme
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Thanks Tincup, I have an electric blanket that helped but I definitely wasn't going to fall asleep with it because as soon as this started I didn't sleep at all. I was wide awake for four days and constantly pacing.

I detoxed with epsom salth baths, dandelion tea and lemon water.

I'd like to think of this as an adverse reaction to Mepron. I suppose when I first got ill I would have stretches of sleepless nights.

But I never had constant pacing and tremors and chills. Then the sinus inflammation and pressure. I stopped being able to breath through my nose. Apparently the crazy thoughts are normal and I suppose I could handle them but the combination was just too intense.

Plus the whole seeing yellow. What is that? Mepron saturating my eyes or something.

I guess I could start taking it again at a lower dose maybe if my Dr. thinks I should push through it... I'm definitely a little scared of it now.

I'm not the type to give up on something if it gets a little difficult. It's hard to know what's a herx and what's something to be concerned about.

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Samlyme
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Thanks for that link. I've wanted to read more about Herxing.
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Judie
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I'd stop the mepron. Start with something gentler like malarone and work up if you even need that big of a gun like mepron.

There is absolutely no good reason to herx like that all at once. You can still get well without torturing yourself (that's my opinion).

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Samlyme
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Thanks Judie. I agree. I stopped yesterday and finally got some sleep last night.

Today I've had head and sinus pain. My husband says my hands are still trembling. I've had a few urges to pace (which is really bizarre) but I've managed to limit them. Some depressive thoughts but not as intense. Vision is still tinted yellow.

I'm getting IV vitamin C and Glutathione tomorrow so that should help.

I've had incredible bouts of illness over the years with undiagnosed lyme but this was all so extreme and debilitating and kept increasing in severity.

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S13
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Dont forget magnesium! Mepron depletes it.

Im not sure what causes you to pace around at work, but if it is some kind of restlessness, then definitely suspect magnesium.

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Samlyme
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Thanks, I didn't realize mepron depleted magnesium. I do take a supplement twice a day but I could probably add more.

The pacing was definitely caused by some kind of restlessness. It started at work but then it majorly escalated to where I could only remain in one space for ten minutes. So I constantly paced all day and night. It was so bizarre. I don't really know where the compulsion was coming from but I just had to do it.

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Tincup
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Just another quick note after reading your responses.

When we detox, the 1st way is through the skin. The second is the sinuses. Having the sinuses clogged up and feeling the pressure might be from the herxing. I have to take a nasal decongestant daily cause I can't clear the toxins and without the decongestant I couldn't breath through my nose either.

Also, I once did the "pacing" thing. Felt like walk a marathon and I could climb straight up the wall, walk across the ceiling and walk down the other side. I couldn't sit down at all, just kept pacing- in a harsh, stern manner, like very determined, but didn't know why.

This went on most of the night and much of the next day till the nurse found me at home alone pacing and sort of babbling or out of it too.

She assumed it was an allergic reaction to my IV Rocephin, so they took me off of it immediately. I can't remember what else she may have done for it, if anything???

Problem is, back then no one knew about herxing. Not until people were dying and some articles were published did we figure it out.

I've had allergic reactions before and they never felt like that. So I believe many people being treated back then were mistakenly told they were allergic to a medication when it could have been a herx.

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Phoiph
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My vision also turned yellow while on Mepron. I called the drug company, and they told me to stop taking it immediately; as it was a sign of toxicity.

The yellow tint lasted months, indicating it took that long for my system to synthesize the drug.

A blood smear showed I still had moderate to severe Babesia, and continued to be extremely symptomatic after discontinuing the Mepron.

One has to be cautious not to confuse drug toxicity with a "herx".

(I am now 100% well and med free...thanks to mild hyperbaric...)

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Samlyme
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Thanks everyone for your feedback. I have a really high pain tolerance and manage most things well, usually only reflecting on how horrific they are after the fact. But this was too much.

Part of me does still wonder if it was a herx and if I had stuck to it would I be better but I need to work unfortunately so I can't be that debilitated indefinitely and the intensity of the symptoms were really unbearable.

Everything white looks like it's tinged a dirty cigaret stain yellow.

I can't believe how harsh Mepron is. I think that was one of the worst experiences I've ever had… Well we'll see, I'll give it some time and rate it when I have a little more perspective. It's up there though.

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Phoiph
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As I said, if your vision turns yellow, it is toxicity; a sign that your body is not metabolizing the drug efficiently and it is building up in your system.

Your eyes contain aqueous fluid, and this fluid is saturated with the drug; hence the yellow tinge.

(One would think that if your body fluids were this saturated, it would also affect the Babesia...not so in my case.)

[ 11-04-2014, 10:45 AM: Message edited by: Phoiph ]

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Samlyme
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I've seen elsewhere people say it's a harmless side effect that will wear off after you stop but your explanation sounds more accurate.

I wasn't metabolizing it efficiently enough and it was building up in my system. I wonder if that's why it started to hit my sinuses really hard just before I stopped. I was just being saturated with the stuff.

I had no problem whatsoever the first two weeks. I've read that it can take that long to build up enough in your system though.

Having excess mepron build up sounds like what probably happened. I was incredibly messed up and it wasn't looking like it was going to back down. Blah

I'm still recovering. I feel like a shadow of a person today slinking around. Still weary from the whole escapade.

Thanks for helping me make sense of it. That really does help.

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Phoiph
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If it was a "harmless side effect", then the drug manufacturer would likely not have told me to discontinue it immediately when I mentioned it...(They actually prefer you to keep taking their drugs if at all possible...:)
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Samlyme
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It makes sense. Now I'm wondering about my sinuses. They became inflamed and were burning the last day I took the mepron. I hope they weren't becoming saturated by the excess mepron. My left sinus is still painful.

But I just read online that mepron can cause sinus infection. I hope its not a sinus infection. How could I possibly get a sinus infection while on so many antibiotics.

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Tbrown2
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Holy crap Im so glad I read this ... I thought I have been going crazy these last few weeks when I look at something white or light colored it's turns yellow until my eyes adjust. I had no idea mepron could do that.. Do I have to stop it now or something?

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Samlyme
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I just found a reference to Yellow Vision on page 16 of Glaxo Smith Klines Drug info document. https://www.gsksource.com/gskprm/htdocs/documents/MEPRON.PDF

Under Eye disorders based on post marketing experience it lists Vortex keratopathy.

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Samlyme
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That might not actually be what makes vision turn yellow though. I've seen pictures of people with yellow eyes but I haven't read anything about Vortex Keratopathy turning vision yellow.

Maybe it is the same thing but there's just not a lot written about it. The pictures look gross though.


Ocular signs cornea – vortex keratopathy - consists of grayish or golden brown corneal epithelial deposits. They are innocuous, completely reversible & not related to dose or duration. 50% patients may have decreased corneal sensation. They start at a point below the pupil & gradually swirl outwards sparing limbus. poliosis lens - white flake-like posterior lens opacity uvea - decreased accommodation due to its effects on ciliary body

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Samlyme
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And not to contradict you Phoiph but I was frustrated that I can't find anything but a brief reference to yellow vision with mepron here and there in chat groups online so I called Glaxo Smith Kline to hear what they had to say about it.

It was annoying. They said they were not aware of that being a side effect. I said "that's odd because it comes up often enough online if you search for it." And they just said well we don't have reference to it in our records.

Then they took down all of my information. Home address, date of birth. And noted all of my side effects and the duration of use and onset.


I still agree with your theory that it is caused by an inability to metabolize the drug properly. Maybe GSK changed their policy on what information they provide. Maybe since it's a more rare side effect they're not obligated to report it. Who knows.

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Phoiph
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I reported it to the drug manufacturer back in 2007. I can only tell you that they told me to discontinue it immediately as it could be a sign of toxicity (as did my LLMD at the time). Who knows what the drug companies choose do with the information.

Vortex keratopathy is a different condition than the one I am speaking of, and is not what I experienced...

I have a background in vision and visual impairments, so was particularly concerned about this reaction.

I would discuss this effect in context with your overall Mepron experience/reaction with your practitioner so you can make as informed of a decision as possible...

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Samlyme
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Yeah the pictures of vortex keratopathy are of yellow eyes so I just thought yellow vision that's it. Then I woke up a bit and realized it's not that my eyes are yellow I just see yellow.

I really wouldn't be surprised if there are now more lax laws for pharmaceutical companies and what they need to disclose.

I also have a bit of a white glare in my vision when I'm outside in the sunlight.

I meet with my LLMD tomorrow with lots to discuss.

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TF
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Samlyme, so glad you are meeting with your doctor tomorrow.

I had a friend years ago who was on Mepron and called me and told me she thought she was turning yellow. She was referring to her skin color.

The lyme doc had her go immediately for blood tests and, sure enough, her liver was not handling the Mepron. She had to stop it for quite a few months.

So, I have been concerned since you are bringing up seeing yellow. I hope all is well. But, this is something that the lyme doc needs to know asap.

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Samlyme
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Thanks TF, I've heard that mepron herxs can be terrible but this did feel over the top. I'm glad I stopped it when I did. I definitely needed to.

Thankfully my skin and eyes aren't turning yellow. I would be at the hospital if that were the case. It's very important to be conscious of the possibility of that kind of thing though.

I do see yellow. It looks like very light yellow watercolor splotches in my field of vision. White surfaces appear yellow. Some blues look a little green because yellow and blue make green.

I'll be seeing my LLMD bright and early tomorrow at 8 am. I hope we can find a mepron alternative.

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Tincup
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Thinking about you! Hoping you got to doc and back just fine.

Wondering what can be done to make you better- any news?

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Tincup
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Thinking about you! Hoping you got to doc and back just fine.

Wondering what can be done to make you better- any news?

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Samlyme
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Hi Tincup, Thanks for checking in. The visit to my LLMD was underwhelming.

He can be an attentive considerate guy sometimes and other times he seems detached and I feel like I'm talking to a bored clerk while he types up my responses.

So he didn't have any feedback on my Mepron experience. He said there's really no way to tell what's a herx and what's an adverse reaction to an antibiotic.

He made a face when I mentioned yellow vision like he'd never heard of it before.

He took me off the Mepron and told me to start Tindamax in two weeks but to let my body recover in the meantime with detoxing and supplements.

I'm still seeing yellow. I'm also seeing a white glare when I'm outside. It's a soft white glare almost like you're looking at a photograph.

That's unsettling. And my eyes are a bit more blurry than usual. The blurriness typically comes and goes though so maybe it's unrelated.

I'm still recovering from the whole thing. Yesterday I caught myself talking to my dog, and that's a good thing, that's a normal thing.

It's like I've been away for a while. Today I feel like I'm coming down with a cold or something but it's probably just a residual gross feeling as I try to get back to normal.

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Phoiph
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Samlyme...

It took a couple of months for the yellow to clear from my vision (but mine was very, very yellow, not just a tint).

Be sure to drink lots of water...

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Samlyme
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When I was reading up on Mepron I noticed that it can cause Thrombocytopenia. I have chronic thrombocytopenia. Thrombocytopenia is essentially low platelets.

I wonder if because I already have one of Meprons possible side effects Im somehow more susceptible to its... powers... I don't know.

I'd love to know how it works. I've tried reading that but, forget about it. I need an advanced chemistry degree to understand it.

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Samlyme
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Thanks Poiph, I'll be drinking lots of water. It's so annoying to have that yellow liquid ghosting around me still.

This lyme stuff really asks for all you've got sometimes.

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Samlyme
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After I stopped taking Mepron I have to admit I did feel a bit better than when I had started it. It took me three or four days to work out the agitated thinking and then I felt teary and emotional for another three days and then tired, and very thankful to finally be tired.

Initially, a few days after the mepron started to wear off though I did feel a little more mentally aware than I have in a while. I guess maybe it was helping me.

Right now though my vision is more blurry than it ever has been. Blurry vision comes and goes for me. The yellow vision faded already.

I don't think the blurriness has anything to do with the yellow. It feels more like a revival of whatever it is that acts up and makes my eyes blurry.

Could this be babesia? Do you think it's acting up because I stirred things up with a couple weeks of mepron and then backed off?

Can you treat Babesia without Mepron?

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TF
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I got rid of babesia about 10 years ago now by taking Bactrim DS and pulsing artemesinin. Read about it here:

http://www.lymebook.com/antibiotic-treatment-for-babesia-bartonella-ehrlichia-co-infections

I couldn't take zith or any of the other meds that must be paired with Mepron/Malarone, so that is why my doc used Bactrim.

He said it takes twice as long as Mepron/zith to get rid of babs, but it worked for me.

Hope this helps you.

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GretaM
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Mepron and zith weren't good for me either.

My doc is attacking babesia via antiparasitics and herbals.

It is working. But whooo is it tough!

Makes me super emotional.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
Samlyme
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My Dr just took me off Bactrim... I wasn't having any problems with it and it did make a difference.

It helped clear up a heavy heavy case of mental fatigue I had been carrying around for years... I've been on it for three months so I think he's just switching things up.

I'll look into the bactrim artemesinin combo... Mepron was the most intense experience I've ever had so an alternative sounds appealing.

. I've had nightsweats and air hunger but the air hunger was never too to bad and night sweat is weird but not debilitating so I didn't think I had a major babesia problem but treating it is a lot more challenging than I expected.

Throwing mepron on my babesia was like dousing a gremlin with water. chaos!

I agree that the emotional aspect is what's so challenging. I can breath through the pain like a champ at this point. I heard to expect mepron blues but it's a lot more complicated than that.

I guess I just have to separate myself from my own emotions enough to face them as a herx rather than a meaningful part of my life.

I can't believe anyone has to go through this.

Posts: 154 | From Boston | Registered: May 2014  |  IP: Logged | Report this post to a Moderator
   

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