Newbie – need help

[kati34]

Hey Everyone,

I read The New Arthritis Breakthrough several years ago, but my rheumy talked me out of the treatments.  In the time of my diagnosis, I have failed 5 biologics.  I had success with 1, Orencia for 11 months…best 11 months of my son's life.  He is only 4.  I am only 34, and I have already had this disease for six years.  My hubby and I have had to sell our home, cash out our retirement and we have no savings left to speak of.   He is a Vice Principal, and yet we live so meagerly due to the high costs of my medical bills combined with my inability to work.  I just finally applied for disabiiity after all this time.  My drs. are for it.  Its not what I want.  I want to work.  I just got hired to teach one class at the Community College.  The lawyer says that is fine since it is only 4 hours a week.  I'm SOOOO excited to finally be able to use my gifts again, I can't even tell you.  But to think it is 4 hours instead of the 50 I would normally work…Yet, I'm just so happy to even have that. 

I have a blog.  I'm not here to promote it, I promise.  But it seems to have struck a note with many, and I think you can get a better idea of my story if you visit.  Start with the older posts – they are better.  Sorry for the bit of profanity, but I named the site after a persona I was using to write about the disease. 

It is RASuperbitch.blogspot.com

Maybe if you see the progression of my thoughts this year, you can help me decide what to do.  Thanks everyone in advance for their support.

– Katie

[Kats]

Hi Katie,

I am 31 and had my first symptoms of RA at 27.  I have been on antibiotics for about 9 months now, and like everyone here will tell you, it's a long and complicated journey…not a quick fix.  I was doing quite well over the winter, but started flaring again in March.  I now have an AP doctor and have started on a new protocol and am flaring again but I am hopeful that it is “herxing” and that the antibiotics will continue to work. 

The pursuit of an antibiotic cure for RA is basically what is keeping my head above water,  and keeping me from feeling the full brunt of the despair and fear that comes with RA. 

I'm not the best person to get technical advice from, others here will definitely chime in for that.  However, I just wanted to say welcome, and let you know that for me, the hope that comes with pursuing this antibiotic treatment is indispensable. 

You're in my thoughts,

Katie

[Tintap]

Welcome

I am fairly new to this board – though I have been on Antibiotic protocol from a long time.

I got RA in Aug/Sep 2004 ( after my son was born in July 2004). I got started on Mino by end of 2004 and am happy to report that I went into complete remission by the beginning of 2005 ( more like March 2005).

I am living proof that AP works .

Its another matter that after my daughter was born in 2008 I got another flare – which I havenmt been able to beat (yet). My hunch is that my antibiotic regime just needs some tweaking. 

Till date I havent taken any conventional DMARDS nor have I taken any biologics.
I try work full time ( yes there are days when I cant drag myself out of bed – but I TRY to manage) and raise 2 kids. it hasnt been an easy road – but AP allowed me to come this far without DMARDS.

Hope this helps ….

[kati34]

Thanks you guys SO much.  It is especially wonderful to hear from two young women, one at least with small children, whom are doing pretty well on this therapy.  I wonder why it is that some people do so much better than others.  Are there any theories?

My best to both of you.  Please keep in touch,

Kati

[reesak]

Hi Katie – I am 43 and was diagnosed with RA last year – I, too, have 3 children under the age of 10 who I am trying to raise and it is really difficult.  I just started minocycline a month ago and am on 10 mg of prednisone so I can function.  I am also undergoing comprehensive Lyme testing to rule that out.  I have been on sulfasalazine which gave me bad headaches so I had to stop it, as well as methotrexate for 1 week and I have never felt so terrible in my life.  My rheumy wanted me to go on Enbrel, but I refused.  I do medical transcription at home for a living and it is getting very hard to type with my sore hands. 

I just wanted to welcome you and hope that you can find a treatment that will allow you to work again and raise your family.  It gets really hard some days to just get out of bed and face the day.  Take Care.

ReesaK

 

 

 

 

[Tintap]

Hey Kati
      Its a long and hard road out there – but we shall survive – shant we?

We will provide each other support , lean on each other and beat the monster.

I was reading parts of your blogs – and some things really resonated with me ….
The parts where you seemed to feel inadequate because you were unable to do normal mom stuff for your son – boy do I know where you are coming from ….

The days I am unable to pick up my 2 year old – I feel so guilty – and guiltier still when my 6 year old tells his sister – “Mom is having a bad achy day – dont bug her today. When she feels better she will pick you up without asking”

I am almost 36 and my son is almost 6 – so looks like we both had our boys at the age of 30 🙂

Lets hope you respond to AP.

Cheers
Tintap

[Fran]

Katie-  I understand how hard and frustrating this disease can be!  I have four kids and got this disease at the age of 36.  I'm 40 now.  Fighting the fear of what the future will bring is one of my biggest battles.  I try and be a strong mother whom my kids can look up to and see as capable and able to do things.  I feel like I try and hide what this disease is doing to me physically from my kids because I don't want them to think of me as weak and sickly.

I have been on AP since the beginning.  I went into a short “remission” after doing IV clindy and mino but I just have not been able to stay on mino due to mino induced lupus so I switched to doxy and did another round of clindy IVs.  I've never been able to reach the remission I had been in while on mino.  Its very frustrating!

I've also completely switched careers due to this disease.  At one time I was an attorney but now I work with people who have had strokes/cancer/arthritis and do rehabilitation in a warm water therapy pool and rehabilitation on land.  Its a completely different direction but its enabling me to work and keep myself out of a wheelchair because I have to do the same exercises that my clients do!  Its probably the best job for someone who has my illness.  I would never be doing what I'm doing now if it weren't for this disease, that's for sure.

Take care and I feel your frustration!

[Eva Holloway]

kati34,

welcome to our world.

I was diagnosed 1999 but did not get sick until 2005. The year before I had small problems and never even thought it would have to do with my illness. My rheumy put me on a high dosage of Prednison, then I was on cytoxen, went on Cellcept, Enbrell and then I got this bad infection and the rheumy refused the antibiotics I needed. I went to my pulmonary doctor who put me on Biaxin and within a few weeks I started to feel better. That is when I looked up RA and antibiotics. I read a members story and decided that is the way i wanted to go. I found an AP doctor and have been doing fairly well. At one time I had to use a wheelchair, now I use a three wheel rollator to get around. I medically retired in 2006, but. at that time I was already over 64 and was able to get my social security. The last four months before I retired I had no income and my short term disability didn't want to pay. It was hard on us money wise,that is why I retired.  So I could get my ss and go on my husbands insurance.

Have you read the book “The new Arthritis Breakthrough written bt Henry Scammell about Dr. Brown? It is a must read book to get yourself informed.

Take care, best wishes,

Eva

Eva Holloway

[kati34]

Yes,

I did read the book, but it was a while back.  I remember my Rheumy saying she would be willing to try, but wasn't overly thrilled about it at the time, but this time, I think she'll have no choice.  I'm ready.  Nothing else is working.  Except…my husband and I both notice that when I take antibiotics for unrelated things, my RA always gets better.  Did anyone else notice that connection?   Does that mean it will work for me or won't?

And tintap, I'm SO glad you liked my blog.  Feel free to write to me via my email anytime.

 

Thanks everyone!!!

Kati

[kati34]

Fran,

How great for you for switching careers.  I am in the midst of the same sort of thing, but also applying disability.  Unless AP works, my answer will lie in the midst of some sort of combo. of the disabiity with me teaching a few courses at the comm. college.  🙂

We'll be on the road to financial recovery, at least.

Nice to meet you, Fran.  All my best,

Kati

[Tintap]

Kati
   The fact that while on antibiotics you feel good means that you will respond to AP – just that you need to find the right mix

[kati34]

Tiptap,

That would be SOOOO wonderful.

Is there anyone who can suggest an AP doctor in NC/SE Virginia area.  We live on the border, so I can get to either places. 

And is EVERYONE here on the gluten free diet?  Is it  a must-do?

– Kati

[Tintap]

Hi Kati
     At this moment I am not on a gluten-free diet – though I am sure it helps with the pain and inflammation. I do it for some periods of time and it really does help – but I am not disciplined enough to make it a life long habit.  However I DO restrict gluten rich food. What helps in that I live in a part of the world where its feasible to make lot of food from the scratch – so that you know exactly what goes into your meal …..

However if and when I choose to eat out  all my good intentions why out of the window.  Yesterday night we had chinese food from the local restaurant for dinner – and today all my joints can feel it too 🙂

Hang in there – you will soon figure out what your food triggers are – and will learn to avoid/restrict those triggers.

Do you know I have some environmental trioggers too – handling housedust makes my joints go achy 🙂 Go figure ( on the opther hand maybe thats just an excuse for me to avoid dusting  – lol )

[Kim]

[user=2441]kati34[/user] wrote:

Tiptap,

That would be SOOOO wonderful.

Is there anyone who can suggest an AP doctor in NC/SE Virginia area.  We live on the border, so I can get to either places. 

And is EVERYONE here on the gluten free diet?  Is it  a must-do?

– Kati

Kati,

Do you have the doctor's lists for those states?

kim

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