tempted to stop meds…

[Kash]

I just finished Mepron and I am feeling the best I have in months.  I am being given another med to start – and I am asking myself – why, you feel good?

I know the answer to this, guess I needed you all behind me telling me “bad idea”, the little buggers are just hiding…

Thanks!

[Maz]

[user=2011]Kash[/user] wrote:

I just finished Mepron and I am feeling the best I have in months.  I am being given another med to start – and I am asking myself – why, you feel good?

I know the answer to this, guess I needed you all behind me telling me “bad idea”, the little buggers are just hiding…

Yea, you guessed it! :roll-laugh: So glad you're feeling better, Kash – awesome news!!! I'm just about to start Mepron and it was nice to hear you'd had such a good experience with it. My LLMD likes Mepron, too.

Lyme (and its hitching partners in crime) waxes and wanes, so you could be having a honeymoon period after stopping your Mepron. The only way to know is to start taking the new med and, if you herx, there is still work to be done. :doh: Or, you could risk it and take a chance….no one can really say for sure how you will get on. I just know that in my own case, I would like to be in a good solid remissive state for a good 3 to 6 months with all lab markers normal before taking the risk….a personal choice, though.

In any case…waaaaaayyyyy to go! Don't forget we want your testimonial when you're ready…see the big finger of “Uncle Sam-Brown” pointing at you??? :roll-laugh:

Peace, Maz

[Parisa]

Kash,

Good to hear you are doing better and we really want to continue hearing that so please stay on the meds.  You feel good now but there may be an even better level of wellness that you haven't achieved yet and you won't realize it until you get there.

[Kash]

All good answers…I have a feeling I am in la-la land-
but it won't hurt to stay there a day or two.  My husband is having kidney surgery Monday, so I think I will wait til tues or weds to start the next one.  I still have sweats and body twitching~ but it is like a dream to feel good- even if for days -like I used to (or remembered feeling….what is good and what is normal?:shock:)

The Mepron was covered by my insurance.  My son went to pick it up one day and the Pharmacist screamed – it had not gone through me insurance yet and was $1500. 
Gotta love that co-pay.

Mepron, few minor complaints I had was the taste, but I got over that soon.  Remember not to use a metal spoon to measure….

It kind of left a nasty gurgling taste at the back of the throat in the morning…other than that, I was sure from the color I was going to glow in the dark from its day-glo brightness…(=

Will keep you posted….

[TischSEB]

Hi Kash – I have been meaning to post an update on our progress – here seems like a great spot. We are having this very issue! After trying minocin, Doryx, and then six weeks of IV Rocephin (in addition to regular monthly IVIG) with mild or no effects, we finally persuaded our doc to give us Mepron.
Three weeks on this and SEB had a severe case of the “Mepron blues” – which I have seen on other sites/boards can be very serious. In his own words, he became utterly inconsolable – crying, numbing despair, insomnia, nightmares. So against everything I believe, he decided to stop this and all other meds except the IVIG. Other than forcibly restraining him, there was nothing I could do. He has always been the wild and impulsive like this.
The very next day after stopping Mepron, he had an intense 2 hour episode of dizziness, nausea, cold sweats, tremors, heart irregularity/palpitations.
Shortly after this, he declared it a “miracle' and said, while feeling very weak , that he felt and energy (fatigue “lifting”) and an uneasy twitchy feeling in his muscles (“re-activating”?). In a word, he felt fantastic and “cured”. The problem is, he absolutely refuses to believe it had anything to do with the Mepron. He prefers to think of the two hour episode as food poisoning (other people ate what he ate and did not get sick), and is entertaining the speculation and absolutely any other theory explaining this most recent turnaround.
Needless to say, this is wildly frustrating for me. I told him I don't care what the cause, but we need to be able to reproduce it, and a “miracle” happening twice is unlikely!
That's where we have been for the past several months, and while he has made some gains physically, he is disappointed that a marathon is not in the immediate future. I am getting sarcastic he, but it is so frustrating having a “mental state” possible impede serious progress.

So Kash – your post totally hit home – very familiar – down to the body twitching. I hope your improvements continue!

Tisch

[nspiker]

Cash wrote:

Remember not to use a metal spoon to measure….

Glad you are feeling so well!!!  Why no metal spoon?

Hi Tish,

Sorry you are having such a rough time with everything.  I have been on Mepron for four months now, and only once experienced the down feeling.  As soon as I backed off the medication for a day or two, and then restarted, I was fine. 

Mepron, as I'm sure you know, builds up in your system.  What I have found is that it is best at a certain level.  Any chance you can talk your husband into restarting Mepron, and just monitor the dosage, and cut back if there are any signs of depression?  What dosage was he on?

Also, I thought IVIG was only used at the end of treatment.  Sorry, I could be wrong.  Have you looked into LDN, instead of IVIG, as an immune booster and pain reliever?

nancy

[Parisa]

Tisch,
if he responded to mepron, what about malarone? My husband got the mepron blues but not with malarone

[Author]

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