Hi Everyone !!

[maz.aust]

I haven’t been in to the Roadback for quite a while now due to changing jobs and new work committments, however with a little spare time tonight I thought I would have a peak at how you all are doing & update you at the same time on how I have been travelling.

A week ago I saw LW for a checkup then the next day with Dr D to fill her in and get more scripts (thought I would beat the Xmas rush…lol). It was only when LW checked her records she mentioned it was Feb since I had seen them both, wow that’s a first for me – 6 mths !! (for those of you who actually remember me I was always having to head back to Dr D for a tweak of meds, at least every 8-10 wks), clearly the additon of the Fungillin has made a huge difference to my wellbeing. I still have a few aches here & there, but I believe that is old age creeping in & unless early alzheimers is also affecting my memory I don’t think I have had a flare since I think around Oct/Nov last year when my wrist decided to have a play with me. Anyway, Dr D ordered the usual bloods and I just got the results, all well down from last year except the RhF which is actually up 80 points to 303 (not unusual for me, but remember with my jack in the box system my RhF could drop 120 points the next day) so I am stoked with the results. Dr D reminded me that it usually takes 5 yrs to head into remission and told me to just keep on doing what I am doing & handed me scripts for the next 12 months.

I can still remember my journey like it was yesterday, and what a journey it has been. I can only imagine what state I would be in if I hadn’t found AP and a good Dr (thanks to Lynnie). There is no doubt that I wouldn’t have made it this far without all the support from the people here on the RB site; people I bothered on a daily basis for months (& you know who you all are) with most times stupid, sometimes important questions trying to get my head around all the information I was being fed. However being determined and tenacious as each month passed the flares got further apart, becoming less intense, then reaching a new plateau where I would sometimes have what I called ‘mini flares’ to just having ‘little hiccups’ and with each tweak of abx I knew I would herx however found them quite easy to tolerate by simply remembering the excruciating agony of the full blown flares I used to have, then elation when I found I was able to do things I previously hadn’t been able to do for a long time. Clearly I count myself one of the lucky ones who chose to travel down the AP route first before trying anything else.

For quite a while the only thing that kept me going was the knowledge that others had already been down the same path and survived and I was absolutely determined to live up to their example.

For those of you who are at the beginning of your journey you need to remember that AP is not by any stretch of the imagination an easy quick road to travel but when you get your life back it is worth every mini flare & herx you may have to put up with.

As I said to a good friend of mine recently “if I never reach remission & have to be on AP for the rest of my life I don’t care because I now have a life”. I continue to believe I am on the right path.

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Patricia.Ann]

Great to hear everything is going so well Maz 🙂 It is encouraging for us ‘newbies’ to hear the positive news.

Keep well.

Patricia x

[Krys]

What a lovely post and inspiring news!!! Thank you for sharing, Maz, and keep going into remission. 😀
Warm wishes, Krys

[lynnie_sydney]

Lovely to hear from you, Maz and glad things are going so well.

Your post about space between appointments struck a chord. I just had a look and realised that I havent actually had a face-to-face appt since Dec 2009! Though I’ve had intermittent phone consults and experiments with changes of meds. I have become pretty good at picking what might and might not suit me and testing that out. Mino seems definitely OUT for me, think I have developed hyper-sensitivity and will be interested in how that comes up in a LW test. What seems to have made huge differences for me energy and wellbeing wise are the following: N-AC (600mg bid), CoQ10 and sub-lingual B12 (on top of a good B Complex). I added each one in seperately and noticed the difference with each one. Even when I’ve had the odd mini-flare, I now just dont get the fatigue that goes with it. And that is an unbelievable blessing. The B12 came from a piece on the cpnhelp site, where it states that they’ve found B12 gets ripped out of the body at cellular level with chronic CPn. Cant remember if that was one of your pathogens. If yes, might be worth taking a look and at the link contained in the piece:
http://www.cpnhelp.org/b_12_deficiency_in_cpn_in

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)

[maz.aust]

Thankyou for your kind remarks Pat & Krys,

Lovely to hear from you too Lynnie, I must admit I have missed being an active member on the RB but I guess it’s one of those ‘that’s life’ isn’t it !

I would love to be like you and have a system that screams for supplements instead of abx but sadly they just aren’t in the ball game for me (courtesy of testing by LW as well as some practical trials) however having said that I have for a few months now been wondering whether I should add B12 to my mix as the only supplement I will be taking .. interesting reading though, may just head off & get some to try.

So glad to hear you have some found some relief with the fatigue and that the supplements you are currently taking are working for you.

Will be in touch from time to time to see how you all are,
Cheers
Maz -Aust

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Pauyen]

Just great Maz, keep up the good work! 🙂

Cheers

Paul

[nspiker]

Hi Maz,
Your story is inspirational, and your words will definitely touch others who are just beginning their journey. I can hear the gratefulness in your voice, and how thankful you are, for how far you’ve come 😎 .

It won’t be long until that remission comes…
nancy

[Eileen]

Hi Maz,

Whether in the beginning, middle or near remission, all of us can benefit from your words and encouragement. Me, who is in the beginning of the middle, can also say that AP really works. It is a hard road, and a long road, but a road worth travelling to get our health back or at least into remission. You have been an inspiration to me and a dear friend. Looking forward to many more years.

Love,
Eileen

[LUANN marie]

Yes, Hi Everyone,
I just found The Rod Back Foundation and this is my first reply to your wonderful news. Your letter brought tears to my eyes and I am so happy for you.
I was wolloped with RA for the first time this last June, an unwelcomed birthday preasant to say the least. By the grace of God I stumbled upon this foundation and already consider myself , on the road back, even tho I have not found a Doctor that will go along with the AP treatment.
As we speak I am running on borrowed time with a shot of Kenelog. I am scared to death of when it will wear off as I have never been so helpleslly in pain and dependent on anyone else before as I was
when the last shot of Kenelog wore off.
Since I was just waisting preciouse time by not being treated by a Dr., I took matters in my own hands and got some Clindamycin from my Dentist. The caps are 150 mg’s soo I am streatching the perscribed dose out and instead of taking one every 6 hours, I am taking only one a day. This should make them last for 2 months. I have been researching as much as I possibly can and hope I am doing this the right way. I realy have no other choice.
My insurance wont cover the AP treatment , so, my next step is to get counceling from someone and head for the boarder. I would be able to get the perscriptions I neep in Mexico, Ive been told.
If anyone out there would like to give me some suggestions, i sure would appreciate it. And so would my dear friend , Lizzy, who took me in and took care of me for two months while waiting to see my RA Doc, who wont perscribe antibiotics but this shot of Kenelog was the only “fix” I had. Time is running out. Im scared.
please help.
love and happiness to you all, God Bless YOu, lulu

[Maz]

@LUANN marie wrote:

If anyone out there would like to give me some suggestions, i sure would appreciate it. And so would my dear friend , Lizzy, who took me in and took care of me for two months while waiting to see my RA Doc, who wont perscribe antibiotics but this shot of Kenelog was the only “fix” I had. Time is running out. Im scared.
please help.

Hi Lulu,

A warm welcome to the RBF discussion forum! 🙂 If you let us know where you’re located, we can send you a listing of AP docs for your state. Some will take insurance and others may not, so it’s a question of running through the list and seeing who will and won’t. If you’re in CA, there is a very experienced rheumy in Riverside who accepts some insurances.

Are you being careful to use good amounts of probiotics while taking oral clindamycin? Clindamycin can be tough on the gut, so you want to be sure to protect it so you get off to a good start with AP. 😉

Hope to chat more with you soon and, if you need a AP physician list, let us know and would be happy to send it to you. It’s a bit strange that your rheumy has refused to rx the minocycline to you, because it is approved American College of Rheumatology DMARD. 🙄 Some folks manage to get an open GP to help them get started:

http://www.rheumatology.org/practice/clinical/patients/medications/minocycline.asp

Hi Maz in Aust!

Lovely to hear from you and so glad that no news has been absolutely terrific news!!! How great to hear you are doing so well and hope all else is well with you and your loved ones. Thanks for checking with such an uplifting update. 😀

[LUANN marie]

Hi Everyone,
wow, its been a while since I was on here. had trouble getting on and with my computor. I got another shot of kenelog and try to make good use of my time while it is in affect.
I was diagnosed last June with ra. My rheumy didnt want to hear about Ap. Said he had better options. When I asked what they were he said,”prendisone”. The kenelog shots are supose to work for three and a half months but have only worked 4 weeks for me. I just suffer the rest of the time.
I did get clydamycin from my Dentist and taking one a day , they lasted up untill I got doxycycline from my primary. She was not willing to perscribe antibiotics for ra either and gave me this one month perscription for acne.
I live in Mesa Arizona, so if anyone has a Doc. in this hood that is up with treating ra with antibiotics, please let me know.
My questions are, 1. does the kenelog interfere with the antibiotic treatment. i have been taking 100 mg M,W,F. and 2. is there anything i can take that isnt as harsh as steroids that will help me through till the antibiotics start working. My rheumy wants to start me on Enbrel which I have heard some really bad things about. What are my choices? 3. its been two weeks since i started the doxycycline, and my ra symptoms are horrible. could this be a herx or did my kenelog just wear off.
This really sucks, treating myself, but its been 9 months since i was diagnosed and in my opinion, THANK GOD I WAS able to get my hands on antibiotics to at least start the treatment.
Any suggestions would be appreciated.
Take care, love, lulu

[maz.aust]

Hi Luann,

So glad I said what I did & more importantly that you found it .. hard to do as it was pre-Xmas
There are lots of good people here on the Roadback who will help you in your journey.

Good luck
Maz-Aust 😉

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[LUANN marie]

HI EVERYONE, 😉
I THOUGHT I POSTED YESTERDAY OR THE DAY BEFORE BUT I DON’T SEE IT HERE SO I MUST HAVE DONE SOMETHING WRONG. I’LL GIVE IT ANOTHER SHOT 🙂
TO TRY TO SUM IT ALL UP AND MAKE IT SHORT…i WAS DIAGNOSED THIS LAST JUNE WITH ra. mY dR. WAS TOTALLY NOT INTERESTED IN ANY AP TREATMENT AND WENT ON TO SAY PRENDISONE IS A MUCH BETTER OPTION. i MANAGED TO GET 😮 cLYNDAMYACIN FROM MY DENTIST AND TOOK ONE, 150 MG A DAY FOR , STARTED ON NOV 7TH TILL JAN. 24TH ( 10 WEEKS). 😛 i THEN GOT SOME dOXYCYCLINE FROM MY PRIMARY (WHO ALSO WILL NOT PERSCRIBE ANTIBIOTICS TO ME TO TREAT MY ra, BUT GAVE ME ONE MONTH SUPPLY TO TREAT ACNE) SO, I STARTED TAKING ONE, 100 MG OF DOXYCYCLIN ON M,W,F. ON jAN 27TH. 😮 i HAVE ALSO GOTTEN A SHOT OF KENELOG IN JULY, OCT. JAN3RD WAS MY LAST SHOT.
😯 SO AS OF TODAY I HAVE BEEN ON OXYCYCLINE 100 MG, M,W,F FOR FOUR WEEKS TOMORROW. mY KENELOG SHOT WHICH IS SUPOSE TO LAST 3 1/2 MONTHS BUT HAS NEVER LASTE MORE THAN 4 WEEKS FOR ME, WAS ADMINISTERED 7 1/2 WEEKS AGO. THIS PAST WEEK I HAVE BEEN EXPERIENCING GREAT PAIN AND FLARE UP IN MY WRISTS AND THUMBS AND NECK AND SHOULDERS. I DONT KNOW IF MY SHOULDER IS RELAATED BUT IT IS THE SIZE OF A GRAPEFRUIT AND SQUISHY. IM WONDERING AND HOPING THAT THIS IS A HERX. 😮 ANYONE HAVE A CLUE? IF IT IS , HOW LONG DOES A HERX GENERALLY LAST. ?
I ALSO AM INTERESTED IN KNOWING IF THE SHOTS OF KENELOG HAVE HINDERED THE AP MEDICATION.? WHAT ARE SOME OF THE CHOICES I HAVE TO RELIEVE MY PAIN WITHOUT HINDERING THE AP?
MY DOCTOR HAS ORDERED ENBREL FOR ME WITHOUT M CONSULTING ME . 👿 I AM PRONE TO INFECTIONS AND HAVE HEP. C TO BEGIN WITH SO WHY HE WOULD WANT TO GIVE ME A DRUG KNOWN TO CAUSE INFECTIONS IS BEYOND ME.
I AM DESPERATELY SERCHING FOR A NEW DOCTOR BUT OTHER THAN TREATING MYSELF AND RESEARCHING AS MUCH AS POSSIBLE , I AM AT A POINT WHERE I COULD USE SOME SUGGESTIONS OR OPTIONS THAT ARE OUT THERE BESIDES SOMETHING THAT IS PROBABLY GOING TO KILL ME FASTER THAN THE RA ITSELF. 😳
MY NECK IS STIFF AND IVE LOST 40 LBS AND I NEED HELP. ❗
PLEASE, AND THANKYOU, 😀
ALL MY LOVE, LULU 🙂

[Maz]

@LUANN marie wrote:

I AM DESPERATELY SERCHING FOR A NEW DOCTOR BUT OTHER THAN TREATING MYSELF AND RESEARCHING AS MUCH AS POSSIBLE , I AM AT A POINT WHERE I COULD USE SOME SUGGESTIONS OR OPTIONS THAT ARE OUT THERE BESIDES SOMETHING THAT IS PROBABLY GOING TO KILL ME FASTER THAN THE RA ITSELF. 😳

Hi Lulu,

Will send you an AP Physician list for AZ. To retrieve, just click up top beside your User Control Panel where it will say (1 new message). 🙂 I am going away for a week, so can’t check that you received this list until I get back. If you can, please just send me a “Yay” or “Nay” that you have received the list. Thanks!

[anikarobinson]

I live in Gilbert. Would love to hear how you’ve been and which doctor you found that would work with you.

[Author]

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