Experience with Mepron?

[beeskneesmommy]

Hey guys - talk to me about your experiences w/Mepron please. DS7 (almost 8) has been doing very well for a year. He still has very mild flares, but only occasionally. They do not interfere with his life at this point. Compared to the bad old days, he is thriving! He has residual fine motor tremors although the other neuro symptoms have fallen off. He also has extreme night sweats that come and go. Due to this, he has been given Mepron, with suspicion that he has Babesia. Started 2 weeks ago and he is really miserable. Lots of anxiety, mood lability, regression, brain fog, OCD....you know the drill. It is killing me to continue because it is clear that he is suffering as a result of the meds. He awakens doing OK then I can see the changes start about 45 mins after administering his AM dose. I assumed that this was a herx which would justify the meds...but now not so sure. Really shaky on this one - please tell me what your personal experiences have been with this issue. Thx!

[sf_mom]

Our experience was similar and it can take a while to resolve. All three children, similar had herx. How much Mepron is he taking? You can push through or you can reduce amount of daily Mepron to decrease symptoms.

 

For example we typically start at 1/4 tsp - twice daily for 2 or 3 weeks, then bump to 1/2 tsp for 2 or 3 weeks and then bump to 3/4 tsp.

 

If you back down it will take some time for symptoms to calm down as well.

 

With everyone I speak with off forum Babesia is a tough bug. Most of us have treated for at least 1 1/2 years. With older DS we treated for 1 year, stopped for a year and are currently retreating for about 6 months now.

[NancyD]

We had a REALLY rough time with Mepron. DD18 was on it for 4 mos and it did not get any better. Wendy, Dr. N (CO) never told us to ramp up with Mepron. Maybe that was our problem! Dr. K (CT) told us "taking Mepron is a bit like letting the tiger out if its cage." OH SO TRUE!

 

Our doctor in CA just took DD off Mepron and put her back on Artemisinin, which was so much easier for DD to tolerate. Wendy, any thoughts on Mepron vs. Artemisinin?

[sf_mom]

NancyD: Ramping up on Mepron was directed by LLMD here in CA. Artemisinin will definitely help treat Babesia. I have heard great success with IV Artesunate 'Artemisinin' but it will also pack a punch... For now, stay focused on treating babesia but perhaps with more tolerable herx response.

 

http://en.wikipedia.org/wiki/Artesunate

 

Anything that oxygenates red blood cells like: Ozone, HBOT, Hydrogen Peroxide, etc. can also create a herx and why I think GMA recommends against it 'at this time'.

[beeskneesmommy]

OK, you know we are not new to PANS, but this is what disturbs me. DS has been doing great. The residual tremors (neuro states that they are non-PANDAS related and a genetic concern, which I don't buy) were the only thing that I brought up in the recent doc visit. Doc asked about night sweats and I had to say that yes, although they stopped for 6-8 months, they were back...not every night but when they are, they are profuse. The Mepron was prescribed although there has not been a + Bab test ever...only a 40 (1 pt. over normal range) for Bart thru Igenex in 7/11. Normal Bart 5/12 and 7/13, Stoneybrook and Igenex respectively. In 7/11 some igg Lyme bands but not enough for Ignex to report as +. DS has been on Augemntin and Azithromycin for 3 years, since 7/11. I am really concerned about his response to the Mepron. Where there was a happy child, there is a fearful, anxious, worried, foggy, OCD kid, the likes of which I have not seen in a year. He was on 1/2 tsp. 2 x day for 2 weeks. We started with 1/2 tsp. 1 x day for 3 days prior to going to this full dose. I am really upset over the thought that perhaps we are loading with Mepron when he has nothing to target. I know that Bab is hard to catch and often a clinical dx, but I cannot stand to see see him this way and know that the meds are causing it. I took him off this morning. Have a teleconference w/thedoc tomorrow. Will report back...but has anyone put their kiddo on this med when he/she is doing well?

[beeskneesmommy]

PS, DS is 7, almost 8. has anyone had experience with kids this young taking it?

[sf_mom]

I think our twins were 4 or 5 when we first started Mepron. They are currently on it again and recently turned 7.

 

Did you notice the night sweats increase with Mepron? I think backing off until symptoms resolve is a good idea. If you reintroduce Mepron start with 1/4 tsp and work your way up over months (4 to 6) to prevent this type of Herx. Or perhaps start with herbals first.

 

Mepron will cross treat and is effective for parasites and Protozoas so perhaps you are hitting something and it is not specifically Bsbesia.

 

From everything you outlined it dose indicate the same response we got from Mepron. We hung in there and all our children did surpass baseline prior to the introduction to Mepron. It's tough to witness but ultimately it helped.

[beeskneesmommy]

OK, thx. I stopped but it was cold turkey at 1/2 tsp. BID. He is still labile, anxious, irritable, very tired, pale and has separation anxiety where there was none that was not age appropriate. I did not observe night sweats when he was on it for 18 days, although I checked. The physical symptoms I did notice was clammy, damp hands and feet, along with complaints of feeling cold at inappropriate times....kind of like a kid coming down w/something but no fever. I am hoping we will get him back quickly...can I pulse this or is it better in a longer, steady run? I spend about $200 on it and have lots left over. I would be willing to give it a try again during a vacation or after he has established the school year and the teachers know him for his "true" personality. I find that people are much more kind and understanding when they see him having trouble, if they already knew him as a healthy,
normal" kid. Oi vay. I really thought we were thru this part of it! Feel like crying. Thanks a million, friends! Warm wishes to you and yours!

[Hrosenkrantz]

Kathy - I've been there. Hope you come through this ok and your son gets this out of his system and back his thriving self.

 

I've been at this for quite a while and have never fully bought into the herx concept. Perhaps that's why my kid is far from recovered -- but the idea of giving the kid a medicine that sets them back so badly -- how do we know its a herx, or just a bad reaction that is not helping. This is what happened to us the two times we tried bactrim. The reaction was so off the charts awful. Now one could argue I should see this "herx" through. Ultimately though we took him off the medicine, on doctors' advice.

 

Oy vey is right:) My feeling is if a medicine makes a southern mom say Oy Vey, its not good

Edited August 5, 2014 by hrosenkrantz

[PowPow]

Totally agree, hrosenkrantz.

On all points- my daughter did not herx, she got worse. No doubt about it. These meds are serious stuff and to target something that may not even be there, is risky, in my opinion.

 

And I also totally agree on the southern mom part

[SSS]

ALL the meds the PANDAS/ PANS kids get a trial/ protocol are serious business: antibiotics, anti-psychotics like Risperadone/Abilify which take over neurotransmitters in the brain, antidepressants especially under 18 yrs. old,

IVIG's with pools of thousands of blood donors,

The Alzheimer disease drugs,

steroids which can shut down immune system and adrenal glands,

etc. etc.

We know that. It's a serious condition.

 

I was going to suggest instead of Mepron for babesia (malaria like disease)

Malarone (prescription, but tolerated better, I think) or

Cryptoleptis herb tincture from Woodland Essence.

The setbacks like this absolutely blow, I agree, and are the very hardest part.

Good thoughts---

[beeskneesmommy]

Talked to Dr. B tonight and we agreed that stopping the Mepron is a good idea. plan is to observe carefully and to contact him if DS has more night sweats. Clearly, something is going on with the intermittent night sweats - they are abnormal and drenching when they have been present. But the Mepron is not for us at this point. After a long nap this afternoon, DS was looking a bit better. I think that the Mepron was interfering with his sleep, among other things! I think we need to be grateful for the past year of great health and gently work on the night sweats and very mild and occasional symptoms...when we get back to them alone. I have faith that he will come back from this fast.

 

And thanks, gals, on the Oy Vey comments Ya made a WASP chuckle!

[ktdommer]

We have all tolerated mepron. Some herxing with sickest child. Switched to malarone with plaquenil and artemisinin for babesia.

I think of these meds as our chemo for Lyme. There will be a pay off in the end. Our doc doesn't allow heavy duty herxing and let's us decide when a break is needed.

My husband had the good fortune of joining us with experiencing mepron due to cancer. He takes it profolactically for pneumonia. Can't seem to keep the liquid fluorescent stuff out of our house.