Kickas.org
Posted By: Donette Diving Deep - 10/25/11 05:10 PM
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.

-Donette
Posted By: Lon Re: Diving Deep - 10/25/11 07:56 PM
Donnette,
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,
agape'
Lon
Posted By: Pea Re: Diving Deep - 10/25/11 11:14 PM
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!
Pea
Posted By: Donette Re: Diving Deep - 10/26/11 12:26 AM
Lon,

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!

Pea,

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.
-Donette
Posted By: snowshoe Re: Diving Deep - 10/26/11 01:10 AM
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.
Posted By: Donette Re: Diving Deep - 10/26/11 01:59 AM
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,
Donette
Posted By: Sue22 Re: Diving Deep - 10/26/11 03:07 AM
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
Posted By: Jaybird Re: Diving Deep - 10/26/11 04:08 AM
Donette,

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.
Posted By: Orch Re: Diving Deep - 10/26/11 03:45 PM
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.
Posted By: Farinelli Re: Diving Deep - 10/30/11 12:00 AM
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!

Craig
Posted By: Donette Re: Diving Deep - 10/31/11 02:46 PM
Sue,

Thanks! Hugs to you. You're a good friend, you keep me going.

Jaybird,

My doc has treated quite a few Lyme patients. (One of them referred me). I hope that means he has the knowledge/know how. He's been at it for about 35 years and has people coming to him from all over the globe. Thanks for the tips and explanations. I always manage to think up my questions for the doc when I'm not right in front of him. I do believe the crappy feeling is the detox/die off because it goes away after 4 days. Its a good thing. Its what I want, I just like to whine a little during the process. lol. (ok, maybe a lot smile )

Steve,

Wow, I hate feeling dizzy. That is so cool the scuba diving was a dizzy-free zone! We desperately need a cure/treatment for this disease that involves fun and a beach!

Take Care!

Craig,

Lol, Thanks! I don't know if I'm tough, maybe just annoyingly persistent at not being ready to accept this as my fate. A warrior princess, that is nice! Maybe I could work that into my Halloween costume this year!

Thanks for the kind words!
Posted By: Jaybird Re: Diving Deep - 11/01/11 03:09 AM
Sounds like you are in good hands. Good luck!

P.S. I recently started IV Vit C (along with other nutrients) again.
Posted By: Donette Re: Diving Deep - 11/08/11 03:55 AM
Jay,

How much C? How often? How much does it cost you??

(I'm nosey, huh!!)

Let me know how it goes for you. I have had it 4 times now, 50K twice and 40K twice. A comedy of errors, really. IV's slip out and fill my hand, or the inside of my elbow. My veins suck. Had one IV in my leg.

Back is now so stiff tonight that I stay bent forward from the low back after standing up. That's pretty.

I saw my GP today and asked if he knew anything about chelating the mercury out with a DMPS provocation challenge and urine catch. (The wannabe scientist in me wanting quantitative proof, the cheapskate in me wanting it done for my $15 copay.)

Well, Rats. He's never heard of it, and he's not going to use me as guinea pig. Double Rats. He also doesn't know anyone who does. I read of a clinic in Oceanside, CA. TIME for a vacation.

The occasional NSAID is doing nothing for me anymore. Eating terribly. Prayed for death again last night. Back on the diet wagon tomorrow. My wrists still have about 3 cm of movement. I'm traveling for chelation once every two weeks now. Going to be a long process. Even longer if I don't control my eating.

Good luck.
-Donette
Posted By: Jaybird Re: Diving Deep - 11/08/11 05:42 AM
Hey Pinocchio (nosy, get it? not so funny),

Sorry to learn that you are experiencing so much pain and distress. Maybe you are doing too much, too quickly? Don't forget to detox if you are killing things off. Definitely drink lots of fluids (clean water preferably). Get back on that diet whatever you do! It's tough, but we become our own worst enemy. It kills me when I stray. I can tolerate some things at one meal. However, if I try to eat them at consecutive meals or on consecutive days, I feel it.

I am doing 20g this time around. My doctor, even though I had done 10-20-30-40-50, sustain at 50g when I did them for awhile back in 2009, is doing that again. Not real happy about it, but that is the way he does things. Last time was 10g. This time is 20g.

He charges $85 at 10g and 20g, $100 above those dosages. I don't know why it is more at 30g and above, but that is what it is. However, he also puts in B-vitamins and some minerals (at least last go round in 2009 he put in minerals). I forget to query him at last appointment.

I plan on going once per month. Last time the frequency was higher, but I can only make once monthly now.

I am only doing this for overall health/well being while I figure some other things out. This MD does the DMPS challenge for heavy metals, but I hardly think you want to travel here. California is much more appealing for a vacation.

I hope things start going better for you.
Posted By: Donette Re: Diving Deep - 11/08/11 03:15 PM
bacon and an egg for breakfast. I am doing much better today. I broke out an old methadone last night and my back feels sooooo much better today. Sometimes I think our pain hormones need a whack over the head. Only slightly dizzy, but I feel better today than I have since June 3rd. Yay. I am making dinner for a friend and her family. THAT's how good I feel. So nice to be able to be back on the giving end of things.

I had an epiphany last night that there is a doc close by who holistically treats autism. I bet she does the DMPS.

Oy, these doctor's and their "carefulness." I'm sure if I were in their shoes I'd do the same thing. But sheesh. Sometimes I wish they would just let me call the shots for my own body. I guess I need to get serious about getting my own Medical Degree. I would be the best doctor ever. I could write Rx's if I wanted to, but I would try every natural remedy I could first. That way I could bill insurance for the few and far between who still have it. lol.

How are you feeling?? (Nosy Parker again.)
Posted By: Lon Re: Diving Deep - 11/08/11 04:09 PM
Donette,
I do not presume to know what is best for you. In my case, what I eat is so much more important than what meds I take in regard to how I feel.
There are more and more babies being born and sent to Denver periatric Hosptial that can not digest the food we try to give them.
Member of our church, has an adult daughter who they took to Denver Hospital, because her stomach had shut down and was not digesting food.
They told her to fast, get off all meds and start over by introducing foods that would heal her stomach.
You have the strength and the power to eat only those things that will make you well!!!!!!
It does not seem fair, but that is what makes us well.


Much love to you and your family.

Lon
Posted By: Donette Re: Diving Deep - 11/15/11 02:35 AM
Thanks Lon. Hope you are getting along Ok today.
Fasting is a good tool. Once I'm off the nsaids, fasting
will be easier. It's like a merry go round sometimes. No fun.

Take Care,
I'm still praying for ya.
-Donette
Posted By: Lon Re: Diving Deep - 11/15/11 02:34 PM
Donnette,
I just realized my new doctor may be mor eunderstanding aobut fasting and then antibiotics...
I am wodnering how you feel today. I got a new breathing mask. more oxygen and wow do I have a headache again today..

I hope to get back to walking this week.

agape'
Lon
Posted By: Donette Re: Diving Deep - 11/15/11 03:55 PM
More oxygen and a headache? That is so awful. So did they see de-myelination in your brain? Were those the changes they saw?
My heart goes out to you.

My neck dislocates frequently and I managed to pinch a nerve that gave me vertigo for the last week. I have mostly been laying on my bed flat on my back with the blinds pulled. Any movement would cause the world to spin violently. I went to the physical therapist yesterday and the dizzyness is much improved.

I have felt in the last 2 weeks that I am stuck in an in between world. Too sick to live and not lucky enough to die. Then as I prepared my sunday school lesson for my 15 year-olds I came across this quote about adversity:

Orson F. Whitney wrote: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God”

I am enduring it, but not so "well" at times.

take care my friend,
Donette
Posted By: Sue22 Re: Diving Deep - 11/17/11 01:41 PM
sorry your neck has been so bad as of late. i know the feeling.....i'm on my way to dr. E today to see what he says about my neck. slowly mine is coming off the flare from august; i still must drive everywhere with an icepack on my upper back, but at least that helps keep it all quiet.

i know i keep bringing this up, but only because it helped as much as anything else when my neck was giving me excruciating headaches: the "real ease neck support".....~20 minutes of laying on that on the floor and things eased up considerably.

http://www.amazon.com/Real-Ease-Neck-and...6611&sr=8-1

wish i could help you as much as you've helped me, first with the ribs, and then with reminding me of the mckenzie neck exercises.

the corner stretches also not only helped my ribs / shoulders but also if i pushed into the corner and pushed my head up like i was coming up out of the water after a dive, i could get my neck to go back where it needed to.

but mostly, like your PT, the chiro helped me through the worst of it more than anything. hope you get through yours soon as well. manual traction was very helpful at my worst. the chiro tried the machine and it did help, but it also hurt the back of my head but in a much more superficial way like a bruise that only lasted a day or so. but the relief from the traction lasted much longer than that.

i think i'm learning that for us its a multi-layer problem. the spondy causes the arthritic changes. the arthritic changes aggravate some all the time. but really aggravate when in a flare, as the inflammation makes things swell and thus press on the nerves more. then too the inflammation makes the joints loose and misalign, and then all HELLO breaks loose!

your strength, patience, and grace through all of this is to be admired. while i understand that GOD is building character through our suffering, i think i'm already enough of a character to last a lifetime! smile
Posted By: naj Re: Diving Deep - 11/18/11 03:09 PM
Hi Donette,
I applaud you for your brave spirit and your open mindedness! Thank you for sharing what you are going through. My heart goes out to you and you are in my prayers.
I read something recently that may give you hope: I was reading about Ayurveda and for some people with a "vata dosha" the fall and early winter are the worst for them. Vata people get arthritis. So, like you, I am learning about alternative healing and just thought I would share that. Hold on and do not give up hope. Much love,
Posted By: Lon Re: Diving Deep - 11/18/11 03:30 PM
Jan, As I read your post to our friend Donnette, I thought myself running to sit in the sunshine, in the long winters.
It is so important to be positively aggressive!

You even help me, Jan. Thanks
Posted By: Donette Re: Diving Deep - 11/19/11 01:51 AM
Sue and Jan,

Thanks for the tips. Sue, I think that Real Ease would do me some good. Hubby says it would make a great Christmas present. Ha, he's desperate! smile

Lon,

I agree, we need to live in a warmer climate! Argh. You are a trooper. We don't have any snow sticking yet.
Posted By: Sue22 Re: Diving Deep - 11/23/11 09:36 AM
one of the best christmas presents anyone ever bought me were a pair of wrist sweat bands when i tore that ulnar wrist ligament. my colleague knew that i did not do well to bracing, but he thought just this small amount of support might be helpful; he had experience with tendonitis himself. they did the job at helping me get over the hump regarding healing. that gift was priceless.

if the neck thing helps you, it will be a gift you will remember fondly. heart
Posted By: goztepe2002 Re: Diving Deep - 12/08/11 05:58 AM
Terribly sorry Donette. Have you gone back to the Radon mines ? I remember having no pain for the complete 24 hours and having lots of energy right after few days in the radon bath in Germany. Wish i could go back.

I hope you get better, keep your head up!
© Kickas.org