Am I Dreaming?

[Nickie_M]

Yes,  indeed I AM….on TWO counts!!! Since being on mino now for a 'steady' 8 wks of 100mg M-W-F, I am:  1) actually sleeping longer and stronger..(enough to dream) YAY!..and 2) feeling different in my body.  How?   I no longer have the intense muscle aches in my legs and arms.  The overall malaise is significantly weaker than I remember it EVER being, (at least for the last 14 years).  I no longer need the assistance of my husband to pull me up after sitting for any extended length of time.  The pain in my left foot is waaay more tolerable, my neck and shoulder pain has subsided,  and I am mentally more alert. (debatable ;))  THANK-YOU RBFBB, ( all the wonderful member posts),  AND Dr. Scammell for lifting me out of despair and confusion!  If it doesn't last, no problem.  At least I'm confident I can get there–and beyond– again.  Ups and downs, right???

I see my Rheumatologist on Sept. 14th.  I can hardly wait until he asks me about my assessment of symptom improvement on AP. (of course it wasn't HIS choice of treatment):roll-laugh:

Nickie 

[whaleharbor]

God bless you!

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[mkbeeliever]

This is wonderful news!  Thanks for sharing your success and giving all hope!  Congrats!

[Trudi]

Hi Nickie–

Impressive–all of two months!!

Continued success,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[lynnie_sydney]

Great news Nickie! 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)

[spacehoppa]

That's brilliant news Nickie! It's truly amazing that you can feel all those changes just eight weeks in. You'd expect that kind of time frame from the traditional DMARDS, but then you wouldn't be treating the cause of the disease. So that's brilliant. I hope your rheumatologist is just as impressed!

I've been taking 100mg minocycline a day myself for the past 3 or 4 weeks. (Gah, lost count already!) I'm trying to wean up my dose in preparation for moving onto the heavy antibiotic regime to treat my Lyme disease next week.

And I had my first genuinely good day yesterday. My joints felt great (so much so that I reduced my steroids by 1mg, so I'm suffering a bit today), and my head felt clear. I just felt, you know, well! Happy days huh!

[lynnie_sydney]

And THAT is brilliant news too Ruth. Way to go! 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)

[Kim]

[user=1317]Nickie_M[/user] wrote:

I see my Rheumatologist on Sept. 14th.  I can hardly wait until he asks me about my assessment of symptom improvement on AP. (of course it wasn't HIS choice of treatment):roll-laugh:

What wonderful progress, Nickie. 🙂  Don't be surprised if your rheumy doesn't share in your joy and says something like, it wasn't the antibiotics, your body just went into remission anyway. :headbang: :headbang: :headbang:   Many of us have heard that lame excuse and it's getting old.  Honestly, would it just kill them to say, “it's nice that antibiotics worked for you”?

I noticed in your sig line that you are using the sauna daily.  Do you mind me asking how long you've been doing this?  I use mine a lot and credit it with many improvements.  Cook the bugs and sweat out their nasty toxins. 😉

So glad you're getting better…………..kim

[Kim]

Hi Ruth,

I have to say what a trooper you are. 

Sounds great that you are handling the Minocycline well because that is one of the drugs used in Lyme tx, only at larger doses.

You might want to look into getting a portable sauna for home use.  My joints felt so much better almost instantly, I should say after I worked up to the point where I was really sweating. 😕  Because of the sauna, I was able to reduce the amount of abx and still get results which made me happy.

Sending best wishes your way.

kim

[spacehoppa]

Hi Kim,

Yes, I'd love to get a far infrared sauna, but cost, where to put it, and finding the time to use it are issues right now. I do think it sounds like a great idea though, so I'll keep it in mind, thanks!

[Nickie_M]

Hello all,

Thanks for your kind thoughts.  It is so nice to be able to share with people who a) care and b) KNOW.;)

Ruth,

The thing is that for the last 2 mos I haven't been interrupting my dosing with any kind of extended break as I have done for the last year.  I was 'on again…off again' with plaquenil, biaxin and mino in various dosages since August 08..  So maybe that has something to do with the success??

Kim,

Thanks v. much and YES…. IMO, the sauna has been invaluable.  I started using it in April 09.  For several sessions I was concerned since I was informed that I would sweat profusely, and I didn't.  I trickled a 'little' from my head and back.  It took several  weeks, but now I take in a large dry towel, and bring it out soaking wet!!  I really am not a Dry Sauna rep, but I think it was one of the best purchases we've made in a long, long time, and I certainly wouldn't rule out it out as being a 'contributor' to my overall improvements.

ps.  I actually had a couple of dreams again last nite.  Happy, happy, happy.:D

Nickie

 

[orchid]

Nickie – glad to hear of your success (and so soon)!

What kind of sauna did you purchase? Can you PM me with the brand and cost, etc? I'm really interested in purchasing one. Thank you!

[Nickie_M]

 Orchid,

PM should be in your inbox. 🙂

Nickie

[Rockin Annie]

Hi Nicki,

Great news for you, at least its a start for you and wow! doesn't it feel good!, after so much pain.

I had my first signs of improvement after 2 months, also for 2 weeks, I can remember being able to do house work and wiping down the kitchen benches with little pain, I couldn't believe it and thinking only after a short time.

Don't be disillusioned if it doesn't last though, as that is where I made my mistake ,I thought it would, and when I started to get the pain back with a vengeance I started thinking negative thoughts and my diet went haywire:blush:. which in turn made me worse. 

There will be always be ups and downs with these diseases, and just recently I had another of those 2 weeks of improvement and still feeling good now. What I am trying to say, is that this road is not for the light hearted, as someone pointed out to me on this forum , but it is the right road and if you perservere and don't give up, you will eventually get there.  Life is good.

Good luck with your Rheumy, and you go girl!…………………..Annie 

 

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Patti D]

Way to go Nickie!

I always tell everyone it is easy to be happy and positive when you are someone controlled or pain free.
It will keep getting better and better. I have to say my sleeping still could be improved as I wake up with muscle aches in one arm, interesting the arm that caused me to pass out cold my second day of antibiotics. A major herx no doubt. I am blaming that on the dufus doctor who gave me a lyme patient 40 mg. of prednisone & doxycycline & vicodin. No doubt the prednisone was a very bad idea with the lyme and the vicodin after that dose went in the garbage.

The best thing for the muscle aches is heat be it Kims sauna, my heating pad or bath tub with epsom salts.Good luck at your Sept 14th appointment.

Patti

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