Plaquenil (hydroxychloroquine)

UPDATE for ya'll...
Well, having been off the Plaquenil x 29 days, I sent a FAX to the LLMD this past Friday outlining what I'd learned about Plaquenil as far as adverse effects went and why I had decided to discontinue it.

I updated him on my condition and how I was quite a bit worse now than I had been the last time I saw him (April- he had me cancel July as I was SO weak. it's worse now.)

I reiterated in a nice (not accusatory) way that getting worse since Jan (started the ABX in mid Jan, the Plaquenil Jan 31.) I told him what I'd learned re: neuromuscular weakness and skeletal muscle adverse effects ( ie weakness) and he basically shut me down in his reply. Said that while he agreed that it is a good idea to stop Plaquenil, it was unlikely that it has been responsible for the ongoing "decline" of my condition.

I had also said I was REALLY worried about the trip to Maine for our apt Oct 2 as it is very tough for me and Dh (It's a 9 hr drive involving a 3 hr ferry and an overnite each way... and I currently need help with all issues related to mobility,) and because we have to leave Noah, of course. (He has special needs.)

So-- he said he thought it best for me to cancel my appt and ended his FAX with the statement that even though his attempt to treat me for tick-borne infection had been "futile," he thought that for my for 'peace of mind' that I had needed to try this to rule out that infection was causing the symptoms. He then wished me and my fam the best of luck.

O. M. GOSH. I was speechless 'til I called Dh at work-- and then **I** cried and **HE** was speechless.

But to be honest, we were not surprised. :( :(

TBH there were red flags that the nurse in me ought to have listened to-- my inner voice-- earlier, but I was TRYING SO HARD to see te positives and go from there, and not "dwell" !!!!!!

I am NOT ready to stop trying. My condition is 'severe and complicated' this same LLMD said in his previous FAX . Interesting how he seems to no longer want to see me, though. I think MAYBE I did a bit too much thinking and problem solving on my own. :( That is just not a good match for me- that's the upside I guess.

I need to start researching Buhner, Cowden and Jernigan's protocols. Are there others? ideas? Thoughts?

PS: Maine was the closest LLMD for us in Nova Scotia. The next closest in in NY. Not a possibility. We have spent enough on this travel thing for now.

Thanks for listening- AGAIN.

A discouraged-- but not quitting-- ~ ali

Girlie said...
Ali - I am so sorry your Dr. responded that way. That must be so upsetting for you.

I am happy to hear you are not giving up....that's great!

We can help you with an herbal protocol - don't worry.

Along with the ones you mentioned, there is also the Chronic Tonic (Traveler's remedy).

So you just need to choose one, order the products.

Thanks Girlie, it is so encouraging to hear your voice in the mist of all this brouhaha, LOL. It really helps! I know you have been following long w/ my "saga." And, yes, it was SO darned upsetting. :( This has been so emotionally, financially and time-wise- taxing and costly for our family.
I am honestly glad that we do NOT have to make "that trek" again though. It's so hard. and so tough to leave Noah and Daniel, even in the loving-care of our "big kids!"

OHMY-- thank God I have this group and new friends on and offline that I have met here, or I fear I would lose it today. The first thing I felt after receiving the FAX and letting Pete know was that I had to update you folks here (and a friend I'd met here) on what had happened. Did it as soon as I could, LOL. Gotta feed the masses, ya know, LOL!

Holy Hannah, though! Jeepers! What a horrible message to receive, altho' "eased" with niceties! Honestly, this was the message I had expected the LAST time I had to reach out to the LLMD.

Thanks for reminding me of Trav's remedy- the Chronic Tonic.

I have also heard (less often. perhaps? not sure) about remedies by Byron White, but that they are effective, too.. (?)

I feared I may have to take this on myself, now it looks like that is reality. Thanks for the help and encouragement. this place **ROCKS** IMHO. TY TY TY....

I have Babesia I was on dapsone at 50 mg the DR was debating if he should go up with the dapsone another 25 mg now or start me with Hydroxychloroquine and decided to give me once a day Hydroxychloroquine and I started Thursday 200 mg Hydroxychloroquine and I am emotionally crying non stop headaches tired sleeping a lot gassy and . please I never knew you can Herx so much on Hydroxychloroquine. herxing like crazy. cant move sleeping all day.