Devie Update

[Devie]

It has now been 6 weeks since I started the pulsing dose of mino on M, W & F (one pill a day).

During this time, I have played around with decreasing the sulfasalazine.  I am still playing around with that.  And I still require the anti-inflammatory action of Advil.

But- I am better!  There is no doubt.  First of all, I can almost walk down steps normally.  Even first thing in the morning.  My energy , appetite and stamina are all improved.  Now here is the amazing news- the other day my water arrived.  I get 5 gal plastic jugs.  I could no longer lift them and once had to ask a neighbor to hep while I stood in th background crying.  This past week, I did it myself with my teenage daughter cheering!  The people I work with have been commenting on my lack of limp.

I still get flares, herxes- Im not sure.  I had a wild night the other night.  I woke up sweating, breathing heavily and my heart was racing, my body felt inflamed all over.  It was really yucky!  I managed to get back to sleep after a while and woke up, took a shower and went through my day feeling fine.  I was too tired to make the lemon/oil drink so I roughed it through the night and I do think that was a herx.

I am wondering if I should keep my Iowa appt. with Dr S. in a few weeks.  It is just about bankrupting me to do this but I also dont want to waste an opportunity to increased wellness.  Any thoughts?

I seem to be on the right track.  I want to  thank everyone here for oyur wisdom, and sharing and support. I am paying it forward!

Devie

[lynnie_sydney]

Devie – that is absolutely fantastic news. It certainly sounds like your overnight experience was a herx. I remember with mine, episodes like this would be in the midst of feeling better overall and my gut seemed to tell me it was herx – just such a different make-up and overall feeling to a flare. From what you are describing, it sounds like you are on a good path and I would go slow on the changes. Some people do seem to get carried away – understandably. But slow seems to be good in every respect in this treatment. This is not a quick fix, rather a long road to improved wellbeing. And you are already on on your way down it! :D:D:D  Re the appt with Dr S, only you can decide the worth of this. Are you working with an AP doc now? If so, are you happy with what you have heard and seen so far? If you are not seeing someone, then consider the benefits of seeing one of the most respected -you've seen some of the posts. Alternatively, Dr S may agree to consult with whatever doc is currently prescribing you the mino. I believe he does do this. Someone will no doubt pitch in to confirm. This could be another option for you. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Todd WI]

Hi Devie,

Congrats on the progress!  Who'd have thought that walking down steps normally could be such a wonderful experience?  I gave up the “crab walking” several weeks ago, and haven't looked back.  Last week my 11 year old daughter proclaimed that she could run faster than me.  Oh yeah, well guess what?  I whooped her butt.  It hurt like heck to sprint, but I was all smiles when I crossed the finish line.

I think Lynnie gave you some great advice on the Dr. S visit.  Good luck with that decision, and congrats again on your progress.

Todd

 

[Devie]

Let me fill you in on what I know relative to Dr S.  He will not consult with my rheumy until after he has seen me.  My rheumy is not an AP doc although he was open to prescribing for me.  He basically does what I tell him to do but does not have a sense of the protocol on his own.  I am self-treating and he is making it possible for me to get the mino. 

I think the obvious thing to do is call Dr S myself and see what he thinks is best.

Next year- I hope to be running again.  Overall- I really do feel better!

Dev

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