Re: Re: One Experience/Encouragement

May 13, 2009

Hi susan,

That is such encouraging news! So happy for you and your family! I a, just

wondering how often your liver panels and blood work is checked w/ the " Sentef

Cocktail " ?

Thanks,

lois...

rheumatic Re: One Experience/Encouragement

>

> Hi Everyone,

> I haven't posted on any of the rheumatic sites in several months

> and at last feel that I may be able to offer some hope and

> encouragement to others on the AP journey. So here's an update on

> my own AP success. Sorry for the lengthiness but I think the whole

> story may be helpful to some. Skip to the 8th paragraph if you want

> the bottom line.

>

> Some background:

> Rheumatoid arthritis (RA) dx'ed 7 years ago

> Traditional meds prior to this round of AP (my 2nd): methotrexate,

> Enbrel, prednisone, celebrex (quit everything except prednisone

> before starting on the AP which, in retrospect, may not have been the

> wisest choice).

> Traditional meds prior to first round of AP: prednisone, voltaren,

> plaquenil

> Two foot surgeries to remove sizable rheumatoid nodules

> ('95 & '02)

> Current meds: generic flagyl (metronidazole) 500 mg twice a day;

> minocycline (100 mg twice a day); generic nizoral (ketoconazole) 200

> mg twice a day; clindamycin IV once a week; prednisone 6 mg a day;

> antibiotic eye drops

>

> My first stint with the AP was begun early on in my disease, about a

> year and a half after diagnosis (late '97). I started with a week

> of clindamycin IV's followed by oral Minocin (200 mg MWF) and

> bi-weekly clindamycin IV's for about two years. At that time, the

> week of IV's worked like magic for me and provided immediate

> relief from a very swollen knee and a few other unhappy joints. I

> never herxed or had any experience other than continued improvement

> starting from day one. After two years on the AP, my husband I and

> were finally able to have the child we'd longed for because I was

> finally able to get off all drugs except prednisone. So that I could

> become pregnant, I stopped all antibiotics and continued on

> prednisone only (at that time, no one on any of the sites I

> frequented knew about the safety of erythromycin during pregnancy).

> The pregnancy was a breeze and I had only occasional mild RA

> discomfort toward the end of the pregnancy. Looking back on this

> first AP episode and based on what I've learned in the meantime,

> I believe that the antibiotic treatment so early after diagnosis was

> what made it so successful for me.

>

> After my beautiful, healthy daughter was born in June `01, I

> enjoyed another 4 weeks of little or only mild RA discomfort. Then

> the bottom fell out! I became nearly incapacitated with pain and

> swelling in every joint known to man. I couldn't pick up my 8

> pound daughter to nurse her and had to have my husband help me lift

> her out of her crib and put her back to bed. I couldn't move much

> of

> anything, really, so even getting to the crib was an undertaking. I

> was a mess and my worst nightmare had come true. I had to increase my

> prednisone intake to 30 mg a day (from 8), just to be able to

> function.

>

> Within a few weeks, I started taking twice weekly Enbrel injections

> (Enbrel had become available and approved for early treatment of RA

> during the years I'd been away from the AP and I decided to give

> it a try because I was in such dire straights). I'd discussed the

> AP with my rheumatologist who poo-pooed it but he did give me a

> prescription for minocycline for it's anti-inflammatory benefit.

> Although I started feeling much better the first week on Enbrel, I

> was told that it would take about 3 months to gain the full effect of

> the drug. I was able to reduce the prednisone to 10 mg a day fairly

> quickly (within a month). By four months into the Enbrel exercise

> (Dec.'01), I noticed that I didn't seem to be improving any

> further. My rheumatogolist added Celebrex to the mix and I found out

> then that the Enbrel would get as good as it was likely to get by

> about the 6 month point. In the 4 - 6 month timeframe on Enbrel,

> I

> was able to reduce the prednisone to 7 mg for a while but by 6

> months, I could tell that it wasn't helping as much as it had

> been

> earlier. By May '02, I was back up to 10 mg a day of prednisone

> and

> needing additional relief. The doc's answer was to add

> methotrexate to

> the mix. Against my better judgment (and all previous promises to

> myself about never taking this nasty drug), I started taking it in

> June '02 and it enabled me to drop the prednisone to 5 mg. It

> worked tremendously well for about 4 weeks and then by 6 weeks, I was

> again at the point of needing 10 mg of prednisone a day to prevent

> constant pain. I was functioning pretty well but hurt a lot. In June

> I also finally went to see an ophthalmologist about an eye problem

> that started at the beginning of the year and had been getting worse

> ever since - and found out that my left eye was being attacked by the

> RA. I couldn't believe it! My vision was very blurred and the

> outside corner of the white of my eye had turned bright red. The

> opth's answer: voltaren drops and prednisone drops which never

> helped

> a thing.

>

> By this time, I was fed up with - and terrified of - the obvious path

> I was on so I returned to my earlier AP " roots " if you will.

> I decided I had to get back on the AP no matter what. I went out to

> the web sites that I'd relied on years earlier.to reacquaint

> myself with the AP and learn what might be new after three years

> away. I began researching for experienced doctors I could see about

> the AP and scheduled several appointments.

>

> At the end of July '02 I abruptly stopped taking the MTX since it

> clearly wasn't working anyway and I'd read enough to remind

> myself why I should never have started taking it in the first place.

> At the end of Aug. '02, I did clindamycin IV's daily for a

> week through a local doctor who had provided these IV's to me the

> first time around. She also prescribed Minocin so I could begin the

> oral treatment. Well, I herxed like you would not believe! OWWWWWW!!

> It was pretty ugly. I went to an appointment in New Jersey at the end

> of Sep. to see an AP eye doctor about my eye and promptly started

> antibiotic treatments specifically for my eye. I had another

> appointment scheduled in early Oct. in Iowa to see the AP doc there

> but didn't find out anything new I could do that I wasn't

> already doing (although the doc is a very kind, concerned

> individual). So I continued the AP as I knew it (Minocin and

> clindamycin) and unfortunately continued to decline (side note: I

> followed all the rules re: 2 hour window for Minocin, probiotics,

> lots of water intake and the guidelines re: hydrogen peroxide baths

> and benadryl). I developed yeast problems and my local doc agreed to

> prescribe daily Diflucan. I also had to increase my prednisone to 15

> mg a day for any kind of relief.

>

> Paragraph #8:

> I visited the rheumatic sites daily for encouragement, information,

> understanding and hope - and got all these things (a zillion

> thanks to all of you who established these sites and who keep them

> alive!!). I also found out about the apparent huge success of the

> antibiotic regimen prescribed by a doctor in Georgia and decided I

> had to go see him. I did that in mid-Nov. '02 and the rest of the

> story is nothin' but GOOD NEWS!!! By the time I went to see him,

> I couldn't travel alone so my Mom (God bless her forever) came

> from

> Alaska to help me travel to Georgia and back. After that appointment,

> I finally felt I'd found a doctor who could and would help me get

> well. When I got back home, I scheduled sick leave at work beginning

> Thanksgiving week (because I was in such awful shape and expected to

> get worse on the new regimen before I got better), filled all my

> prescriptions for the additional drugs (the doctor added flagyl and

> nizoral to the minocin and clindamycin) and got started with the new

> drug regimen on Nov. 20th.

>

> I expected to herx like crazy but didn't. I experienced a slow

> but fairly steady lifting of pain and stiffness. My biggest challenge

> for the first 2 months was an OVERWHELMING, debilitating fatigue

> brought on by the drug regimen. There were days that I could hardly

> hold my head up I had so little energy. Needless to say, I slept a

> lot and did a whole lot of laying down. Another problem I experienced

> was that the drugs caused me to not want to eat anything -

> everything tasted pretty awful and I had some level of nausea most of

> the time. But, within a month of starting the regimen, the pain was

> 70% gone! At the one month point some swelling, especially in my

> knees and ankles, remained that was pretty bad.

>

> Today, just four short months after beginning the new regimen, the

> pain is 95% gone! I returned to work two weeks ago with much of

> my " old self " energy back. My blood work is quickly returning

> to normal - matching the improvement in my symptoms. In mid-Nov., my

> rheumatoid factor (RF) was 160 (normal is less than 14) then spiked

> up to 183 the first month (this was expected). By the end of Feb. -

> just a couple of weeks ago - it had dropped to 100!! I've

> been told to expect that by the time my RF drops to 60, I should be

> completely pain free and that's just around the

> corner.WOO-HOO! In

> mid-Nov. my C-Reactive Protein (CRP) was 8.25 (normal is less than

> 0.8). By late Feb. it had dropped to normal at 0.57!! I've also

> been

> able to reduce my prednisone dosage from 15 to 6 mg a day (and still

> slowly weaning).

>

> I have to tell you that I rarely adhere to the 2 hour window around

> the minocycline because after trying that early on, it was just too

> much to try to juggle it with everything else. I'm using the

> generic instead of the brand Minocin with obvious success. After

> about a month on the new regimen, I no longer needed hydrogen

> peroxide baths because the pain was pretty much gone. Before starting

> the flagyl and nizoral, I took hydrogen peroxide baths at least three

> times a week and sometimes more. I also stopped taking benadryl

> because it didn't seem to make a difference in how I felt (it had

> made a huge difference before I started the flagyl and nizoral). I

> haven't been very good about taking probiotics, either, although

> I do try to get some in now and then. I'm working on increasing

> my

> probiotic intake because I do think it's important. The one thing

> I've concentrated on is eating healthily so my body has the fuel

> it

> needs to heal.

>

> I still struggle with the not wanting to eat issue but it's

> significantly less drastic than it was. My knees still bother me some

> (the 5% remaining pain area) so I can't stand up completely

> straight or walk without limping yet but I'm close to it and know

> I will again soon. My eye isn't recovering very well (can't

> see

> out of it but I can distinguish very bright light) so I'm

> researching

> again to find out what else I might be able to do for it. I think in

> time it will heal, too.

>

> Some of the things I couldn't do four months ago that I'm

> doing well today are:

> Ø I couldn't stand up straight to walk - standing and

> walking at all were very painful. Now I can go for short walks with

> my daughter in her stroller and not be in agony afterward.

> Ø I used 6 pillows to prop up or support various body parts

> while trying to sleep at night. Just rolling over from my back to my

> side or vice versa was very painful and took a lot of effort. Today

> I'm down to three pillows and don't even wake up when I roll

> over.

> Ø I couldn't lay on my sides for more than a few minutes

> because my hips hurt too much. Now I can sleep on my sides as long as

> I want to.

> Ø When I sat down anywhere, I had to sit on a couple of pillows

> and adjust my position every 5 - 10 minutes because of the pain.

> Today, I can sit - even on hard surfaces like wood or concrete -

> without pain.

> Ø I had to use my hands to help lift my legs when getting out

> of bed because of the pain and weakness in my legs. Today I just get

> out of bed like a normal person.

> Ø It was very difficult for me to dress and undress myself

> - getting a pair of pants on or off was awful and I had to sit to

> do

> it. Today I can put on a pair of pants one leg at a time, standing up.

> Ø Showering was difficult because I couldn't turn on the

> water by myself, squeeze the shampoo bottle or stand for more than a

> few minutes at a time. Today, no problem.

> Ø It took forever (several minutes of concentration) to move

> from a standing to a sitting position and vice versa. For the most

> part, I used my arms to push myself into a standing position with

> very little assistance from my legs/knees - too painful. Once

> standing, I'd stand there for several minutes to slowly stretch

> my knees straight enough to walk (more like waddle). Today, I can sit

> normally and can stand almost normally (the knees).

> Ø I couldn't lift anything with one hand that weighed more

> than a few ounces (a glass of water for instance) and couldn't

> lift much of anything even using both hands. Today, I'm still much

> weaker than I should be but I can now lift many more things with one

> hand and without pain and I can pick up and carry my 21 month old

> daughter with no problem.

>

> Again, sorry for being so long winded. I wanted to share both AP

> experiences because it might help someone else avoid a round 2 - or

> an overly lengthy round 1.

>

> Best of luck to you on your AP journey!

>

May 13, 2009

Hi ,

I am very happy for you, keep up the good work.

I have a few questions for you:

1. are you taking this drug combination every day, or every other day?

2. are you taking one keto a day or two

3. do you take them toghether, separate, before or after a meal?

4. is your liver panel ok?

thank you,

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: 1chicshak@...

Date: Wed, 13 May 2009 18:32:30 -0700

Subject: Re: rheumatic Re: One Experience/Encouragement