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#454990 - 10/25/11 12:10 PM Diving Deep
Donette Offline

Registered: 04/03/09
Posts: 1576
Loc: Idaho, USA
Into the Alternative arena, that is.

**AS has now spread into my elbows. I now have serious pain/stiffness/ and some swelling in every bendable part of my body.**

(If you're not familiar with my history, I've tried the biologics: they produce an allergic reaction in me that stops my heart. Steroids raise my blood pressure. Anti-inflams tear my guts to pieces to the point of vomiting acid every moment I'm not eating a saltine cracker. My Rheumy informed me in October of 2009 he no longer wants to see me as there is nothing he can do for me.)

So I waited 4 1/2 months for my May 2011 radon mine trip to kick in before I took a dive into some other theories and treatments.

I went back on the NSD super hard core and "didn't" get better. (after having it work magically for me)

I then took Moxifloxacin (antibiotic therapy) for a couple of weeks in conjunction with the no starch diet and my symptoms got worse. I had diarrhea so bad for so long that my lips were cracked, dark circles under my eyes and knees too week and shaky to stand up on. It kind of scared me so I ended the antibiotic trial. A few mentions are made on KA of when diet plus antibiotics don't work, the people had heavy metal toxicity. I had a mouth full of amalgam fillings taken out in my twenties, and immediately got a stiff jaw and neck that spread into my hips feet and eventual full body AS. I've always asked Doctors if this could be related. One did a blood test and found no mercury. I have since learned that mercury will only show up in your blood if you were very recently poisoned.

Last week I went to a naturopath about an hour away that did a live blood assessment. I have spirochetes, fungus (knew that one, as avoiding sugars made me improve), and parasites. He is also chelating me for heavy metal toxicity.

So in the past week, 3 times I have had IV chelation therapy (B vitamins, amino acids, loads of vitamin C and "oxygen" were injected/dripped into me).

I have had 2 acupuncture treatments (one needle was in between my eyes on the bridge of my nose. wish I had a picture for you.)

One hyperbaric chamber treatment.

Three reflexology sessions.

Three biocleanse foot baths.

2 blood injections (my own blood, injected into a muscle, supposed to stimulated white blood cells in people with autoimmune disease.)

And I now sleep on an earthing pad, and spend more time outside with barefeet. (winter's coming though)

And take a new regimen of herbs and supplements (90 various pills per day, including oral chelation, plus some powders and homeopathic drops).

I've spent $1500 so far.

I feel like death warmed over. My joint pain/stiffness is less but I feel like people on Chemo describe feeling after the IV therapy. For a couple of days. The herbs do bring me back, but the detox feeling is brutal. Nauseated, tired, my brain hurts (lol) and I am whiny.

The good news: My wrists are starting to bend again. It's about 2 cm of movement, but they used to be stone solid. Pretty cool, huh?

I know there are people who will say "...homeopathy is a scam...etc etc" but I am young, have no more western medicine options, have a family, and have AS in EVERY bendy part of my body. Two weeks ago my hubby and I had the "when do we shop for a wheel chair" discussion. I have to try something, and right now my something and my 2000 un-bendy parts are diving into Alternative health care.

Sorry I've been so quiet on KA the last few months, I just am kind of in crisis mode. Love and hugs to all of you.


#455005 - 10/25/11 02:56 PM Re: Diving Deep [Re: Donette]
Lon Offline

Registered: 09/11/01
Posts: 8397
Loc: Gillette, Wyoming
I am sorry that you are in such pain.
I was hoping that you had found something. I do know if I fast and then eat apples I shrink my gut and feel better. But I never have gotten enough relief that I thought i was in remission.

I will keep you in my prayers. I have thought about the wheel chair in years past and then got better. Us slow fusers seem to go up and down.
I hope your hubby has reaffirmed his love and commitment to you and that you have friends and family there to support you.
I offer no suggestions, cept to say, never, never give up. Will your priest annoint you with oil and pray for recovery?

I am able to ride the Harley 3-4 tmes a week, mostly just to the office or for quick trips. I do love it and have tried to slow down.. I actually think it takes more muscle control and is good for me.
Please keep posted,

#455012 - 10/25/11 06:14 PM Re: Diving Deep [Re: Lon]
Pea Offline

Registered: 02/24/11
Posts: 1968
Loc: Pacific Northwest
Hi Donnette,

I am so sorry for all that you are suffering with this darn A.S. I know you have tried a lot of thing's like me. I have been seeing a Naturalpath for several year's and there are something's just like in conventional medicine that work and something's that don't. It is just exhausting isn't it? Especially when you are in crisis mode. Praying for ya' big time!
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013

#455019 - 10/25/11 07:26 PM Re: Diving Deep [Re: Pea]
Donette Offline

Registered: 04/03/09
Posts: 1576
Loc: Idaho, USA

Thank you so much for the kind words. My husband is a priesthood holder and has given me a few blessings in the past several years. It sure helps. Thank you, I appreciate you and am praying for your head pain to ease up. You're just to awesome to be in that much pain!


You are so kind. You are right, some things work and some don't. I researched the IV C more today and it gave me renewed hope. Heck if it kicks cancer, then why not little old AS?? lol. The doc says the treatment must be allowing synovial fluid back into my wrist joints to allow them to move. Yippee.

Thanks for the prayers. It means a lot to me.

#455023 - 10/25/11 08:10 PM Re: Diving Deep [Re: Donette]
snowshoe Offline

Registered: 09/10/01
Posts: 1658
Loc: Lost
Darn, I read the title and was excited to see you'd taken up scuba diving...diving deep even with a trip to the hyperbaric chamber. I wanted to read you found a cure scuba diving which would give me reason to dust off the old gear and do something foolish. Hope that made you laugh and release a few endorphins to ease your pain for a moment. But very sorry to hear you're not doing well. You are open minded and continue to try traditional med and alternatives which is good. Don't lose hope. I'm still lathering up in capsaicin--it helps about 10% but I'll take it.

This bunny Kicks AS !

#455027 - 10/25/11 08:59 PM Re: Diving Deep [Re: snowshoe]
Donette Offline

Registered: 04/03/09
Posts: 1576
Loc: Idaho, USA
lol, thanks snowy! Oh Capsaicin, I remember not being able to pull covers over my hands/arms that night I tried it. lol. too funny. I'm glad it helps you though!

It's amazing how your MD giving you the bird (metaphorically speaking) opens your mind to natural alternatives. lol.

Take Care,

#455030 - 10/25/11 10:07 PM Re: Diving Deep [Re: Donette]
Sue22 Offline

Registered: 01/13/08
Posts: 21331
Loc: Upstate NY
i'm not sure i'd have the courage to do all that you are doing. but desperate times call for desperate measures, or something like that. hugss

you are still my hero in never giving up or giving in, and trying whatever it takes to get the relief you deserve. heart

i'm so sorry you have been so sick lately, and that the simpler (and cheaper) things didn't work and/ or were no longer working! hugss

i so hope this gives you some relief. as you said, too young with too much life to live to be feeling like this. heart

my husband and i have had the disability talk a few times, then i get out of my flare and get some relief for awhile. can't imagine being in a flare as bad as yours as long as you. i think back to how bad i've been for a shorter period of time and don't think i'd have the strength to endure it any longer than i did. then again, God does give us the strength to endure whatever we have to for as long as it lasts.

prayers being sent from me to you and your family. especially your husband. our spouses who have to watch us go through all of this and stick by our sides deserve special praise and prayers as well. rainbow

you've always been there for me when i needed it. i hope i may return the favor in any way that i can. for now i guess that's prayers and special thoughts. heart


Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

#455033 - 10/25/11 11:08 PM Re: Diving Deep [Re: Donette]
Jaybird Offline

Registered: 03/23/07
Posts: 1461
Loc: The Matrix

Sorry to learn that your body is in such rough shape and the outlook is some more rough times ahead. It does sound as though you have made some, albeit small, progress by getting your wrists to bend just a little. You have got to relish in the small victories. I'm sure you have many ahead of you.

Spirochetes = Lyme Disease (unless you have syphillis which I doubt). The spiros carry along the parasites too. They suppress the immune system enough to allow fungus (i.e. candida yeast) to grow out of control. I don't know where to begin, but if your naturopath is not familiar with lyme disease, you may want to consider seeing a Lyme Literate Medical Doctor (LLMD) or Lyme Literate Naturopathic Doctor (LLND). Hopefully, your naturopath is a LLND. You may also want to inquire about biofims and the role they play in helping the spirochetes and other bacteria and viruses evade the immune system. It's all very complicated. More so than any knowledge I have and what I could ever get into here. Actually, chelation (although I'm unsure about oral chelation) helps break up/rid us of those biofilms.

Good luck to you. Stay strong. Some days you will feel like complete crap, but that might be a lot of die off. Make sure to detox and drink a lot of (healthy) fluid to flush all that garbage out.
Kind Regards,

Almost all of us long for peace and freedom; but very few of us have much enthusiasm for the thoughts, feelings, and actions that make for peace and freedom. - Aldous Huxley

Was the government to prescribe to us our medicine and diet, our bodies would be in such keeping as our souls are now. - Thomas Jefferson

#455068 - 10/26/11 10:45 AM Re: Diving Deep [Re: Jaybird]
Orch Offline

Registered: 09/05/01
Posts: 2189
Loc: Utah
I also thought this was a cure that involved scuba diving. I was all for that. Before MS had been diagnosed, and I was dizzy all the time. I went scuba diving in Cozumel, and I was not dizzy at all while I was under water.

Hope you get feeling better.
Steve Orchard, Running from AS & MS

#455322 - 10/29/11 07:00 PM Re: Diving Deep [Re: Orch]
Farinelli Offline

Registered: 08/14/07
Posts: 1489
Loc: Pennsylvania
Sorry to learn of all your troubles Donette. frown

It is a good thing you are so tough! smile

A warrior princess!!!

Wishing you all the best! Please keep us informed!


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