What can I look forward to?

[ccndakota]

I have been useing the treatments IV for four years now. Getting the IV's about every three months two a day 6-8 hours apart for 5 days. After the first round of treatments some weeks latter I noticed my finger nails were growing again. Years ago  I had healthy ong nails . Didn't realize until they started growing again that they had been so unhealthy. the only thing I could contribute the growth spert to was the  AP. Since that time I notice no improvements in fact I gave in and began useing Humira shots. The RA just keeps marching on doing it's damage. I'd love to hear from people who may have had the AP be slow as in 3,4,5,6, or whatever  years and then finally showing  a marked improvement in their RA. Thanks for any responses. cc north dakota.

[DianeWI]

Hi Dakota,

I started AP 16 yrs. ago with the I.V.'s as well.  Prior to that time, I was down in bed and had to be moved around by my family for about three months.  I believe it was only through prayer at that time, that I managed to get up and out of bed, and able to go see a doctor who was 2 1/2 hrs. away.  In those days, aspirin was my absolute best friend.  Tylenol and Ibuprofin don't phase my pains.

Back then, I had horrible kidney pain.  In six weeks of having weekly I.V.'s and being on Minocycline, the kidney pain left.  I had suffered with that for ten years.  Also, there were times when I would fill up with fluid and not urinate for 2 days.  And then it was the Lasix that managed to move things out.

I needed help to get up off a chair.  Hubby had to grocery shop and shop for my girls.  I could not do anything. 

I am not on I.V.s though I should be on maintainance.  I'm not down in bed and I do accomplish things during the day.  I have pain but I can manage.  I mow lawn and garden some.  I shop and go to church and can clean my own house.  I pace myself so that I'm not down in bed from over-doing.  I personally will not go on drugs.  My system is too sensitive.  Aspirin or nothing.  The side-effects  of prescription drugs for me is not worth the effort of even trying them. 

At the Chat on Thursday evening, Dr. S. wrote that in 2007, 375 people died from Enbrel.  Mayo Clinic has an 8% success rate.   In my mind, if Enbrel has only an 8% success rate, why would they bother prescribing it?  Makes no sense to me.

No matter what, do not go off of AP.  Sometimes we slowly improve and we don't realize how much better we are, until we quit cold turkey and the symptoms come flooding back.  I did that one time and never again.

I know we all want to be well so we can live it up.  Most of us get somewhat better, a few will see remission and thats wonderful!  I'm thankful for where I”m at.  I do wish that I could lose the chemical sensitivities, but I doubt that will happen unless I experience a miracle.  From where I was to where I am now…I really try to have an attitude of gratitude. 

Hope this helps some!

Hugs,

Diane/WI

 

 

[lynnie_sydney]

ccndakota – I'm not sure from your post whether you are on IV's only or whether you take any oral form of AP in between. Do you have an AP doctor who is prescribing you a protocol? I am very sorry you are seeing no real improvement and I'm wondering whether it may be worth your while to go see an AP doc (or indeed another one) and just check out some other possibilities. I have been on an oral AP regime for 5 years with great success. (my testimonial is on this site). I have now added dietary changes into my regime because I want to get to the next level of healing and I believe the gut is the key. This may be something else for you to check out. There have been lots of posts re the gut as the centre of our immune system, leaky gut causes, symptoms and ways to heal over the last week. Just type in 'gut' or 'leaky gut' in the search box. I do hope you find some answers soon. Best. 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)

[lee]

You might want to look up Jayson Kyle. He was Dr. Browns patient that took 5 years to respond. He will email you back when his schedule permits.  Also humira knocks out tnf. Tnf is what fights infection. Check out Denise Faustmans work from Harvard . Which has her treatment in clinical trial stage. It involves injecting bcg (which is a live bacteria) in autoimmune patients. She originally is using it for diabetes. It bumps up the tnf factor to fight off all bad cells. So by taking Humira you are knocking out what your body needs to fight off the infection. Also have you checked for strep. You won't respond if you have had a history of strep and it is not treated . Diane urinary retention is porphyria caused by chlamydia pneumonia and the doses used here won't get you well.

[DianeWI]

Hey Lee,

 

You're right…I”m not well, but better.  What do you suggest, the Marshall Protocol?  Please advise!

thanks,

Diane/WI

[Susan LymeRA]

I'm only 2 yrs on AP so I don't meet your requirement but I did want to back up what the others are saying.

#1 Find an AP doctor.  It burns me up that rheumatology does not believe in infectious causes.  There is obviously an enormous amount of information to prove them wrong.  8% success with biologics?  Really??!!!!  Those murderers!!  If you care to read your Humira literature it states right up front that people die from this drug.  So, that means if you die, your family can't sue the pharmacutical company.   8% success with biologics??!!!!  My first rheumy told me up front that “they” don't know what causes RA and “they” don't know how to cure it, but they can slow it down.  He followed that with a putdown of AP, Leaky Gut, Infected Root Canals, etc.  I walked out of his office and thought, well, buddy, I'm not going to follow your plan.  You don't know what causes it or what fixes it.  Heck, you don't know anything.  At least these other doctors are pursuing things that have helped other people .

With a long history of strep and other infections and a positive blood test for Lyme, I was convinced I was a bacteria factory.  1 yr later I found a rheumy who does believe in infectious causes.  Bloodtesting with Quest Labs reveals I have a laundry list of bacterias and parasites. 

If I had gone on the methotrexate and biologics, who knows what shape I would be in today.

#2  My improvement was so gradual, at times I had to sit and list to myself the things I can do now that I could not do before.

#3 Keep talking to others who have been there.  It is the best way to keep up your spirits.

Susan

 

 

[lee]

Diane,

You should look at the symptoms of porphyria and see if they fit. You should check out cpnhelp.org.  I don't know much about the mp.  I do know that minocin made me better too thats as far as I could get not well just better. I tested postive for chlamydia pnuemonia as well as my husband.  I happened upon the site doing research on chlamydia and it made sense to me. It is alot of info but also great info on how to get started on the protocol.

[Author]

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