Time for Testing

[hopefull]

Hi There,It's been a long time since I've posted here and now feeling rather hopeless
and very sick…I'll try to be succinct.
DX with RA in 2001,mths prior had a virulent upper respiratory infection that I felt
never quite resolved.RA came on with a vengenance,with a high RF.I also have Hx of
lymphoma in '89 successfully tx with chemo,included high doses of prednisone and
heavy hitter chemo drugs.I have a long hx of chronic yeast issues and chronic
sinusitis.
Fast Forward to today…I've been on every RA drug out there,all of  'em,the Rheummy
calls me a “non-responder”,I've been on prednisone all this time ,right now on 16 mg
per day!!!Now bones are osteporotic,BIG yeast issues,the sinusitis is just brutal now.
The “RA” is very active .I've just had a new drug perscribed…Cimzia.
A year or so after dx I went to Boston and began seeing a MD well known to this site.
I was on Mino for a few mths.,Got soo sick I landed in the Hospital.In retrospect ,dose
should have been tweaked and maybe I would have had some success.It was not
recommended by this Doc…long story,won't get into here.
At this point I think it's time to take a good long look at some of the organisms that
may be eating me alive,so to speak.I so an infectious disease Dr back in '02,he ordered the typical parvo,cmv,ebv and a few others I can't recall now.
I don't want to see another infectious disease Dr but I'm a little confused about
the differences between AP Dr,LLMD etc…I have a sense of urgency now as I'm really
sliding backward and literally living on synthetic cortisol and host of other crappy
medicines. I know there are no “AP ” physicians in Maine  which is where I live.
I could easily drive out of state,grew up in Connecticut so would go there in a heartbeat.
In closing,alot of time has gone by …I regret not fighting harder for myself earlier.
I'm an RN, so it's taken a while for me to really lose my Faith in the tradtional
medical model.There are no answers there for me…I've been so impressed by the
knowledge you all have…Maz,Lynnie,Susan,A Friend etc…and how D…. hard you've
worked to  regain your HEALTH.I hope you can help point me in the right direction.
Thanks for listening and Take Good Care…Kathy

[Maz]

Kathy, you have fought some big battles over the years and I am so in awe of your courage and strength. 😯

The difference between an AP doc and an LLMD is that an AP (antibiotic protocol) doc prescribes antibiotic therapy for rheumatic diseases. An LLMD is the shortform for a Lyme Literate physician. If you suspect Lyme may be at the root of your RA, then I can send you lists by state in the NE for these docs. Alternatively, there are two very good options in MA (Dr M and Dr E) that I know of. Dr M follows Dr Brown's protocols quite closely and Dr E is quite holistic in approach to AP. Both have websites I can fwd to you to check out.

Combatting yeast sounds like it's a top priority for you and, with longstanding disease, have you ever considered the IV clindamycin option? Knowing what you want to address, first, and then researching the docs to see if they can provide these services to you will be a top priority. You might also want to research Lyme disease, as you live in Maine, which is quite a Lyme endemic area. Lyme disease often results in a non-response to traditional meds. This can also be the case with AP, if there unaddressed coinfections where a combo approach might have been needed. I know a lady in MA who was on AP since the early 90s. After a run-in with cancer, she found her RA came roaring back and never quite reached remission again. She had a persistent stiff neck and recalled a rash her doc told her was a spider bite right before her RA hit. So, she decided to pursue Lyme treatment and discovered she had had unreasolved babesia all those years (a protozoan infection that needs separate treatment), though her Lyme titers came back negative. She is now doing very well and doesn't think she will need the knee replacements she was heading towards.

Kathy, if it helps, I will send you both AP and LLMD lists for MA and CT. There are also some top LLMDs in NYC.

Peace, Maz

 

[Susan LymeRA]

Kathy,

I'm so sorry you are doing so poorly.  You have the exact right attitude though to try to find your road back! 

I don't fault you for staying within the traditional medical route especially since your training is in it.  I believe most people find it hard to step outside mainstream medicine.  Doctors are revered (sp?)more than they should be.  There are so many times doctors make us better and even save lives that we tend to idolize them and expect more of them than we should.

Additionally, if you consider stepping around mainstream treatment, the doctors will  warn you of the perils you will bring upon yourself.  Honestly, who can blame people for staying inside the box?

I bet if you did a personality study of most of us hanging out here, you would find we have never stayed inside of boxes.  At least I know that is true of me.  I always have to find out for myself and when I was diagnosed RA and read up on my medicine options, I just cried.  There was nothing good to take.  Nothing safe.  I wanted to be well not killed in a different fashion.

Also, with my history of infections, Roadback just made sense and minocin was SO MUCH SAFER to try. 

Still I had to stand my ground against a screaming, red-faced doctor who told me in no uncertain terms what a mistake I was making. 

Well, the rest is history.  I didn't make a mistake. 

Early on I read that as long as you are breathing, your body has a chance to heal itself.  Keep that fact in mind Kathy.  It is not too late for you to heal!

Maz has the name of two good doctors in MA.  One that is AP and one that is holistic.  I highly recommend seeing them both.  You need abx and someone who is saavy on how to tweak the abx for you.  But also, your body is suffering from the drugs.  Your liver is struggling.  Your gut is shot, etc.  The holistic doctor will understand all of that and how to help your body heal.  Then your body can pick up the fight and help the drugs eliminate these nasty bugs.

You may need both doctors or if you are lucky, one of them will fulfill both aspects of healing.

Best of luck to you Kathy!!!  You will win!  You will !

Susan

[hopefull]

Susan & Maz,Thank you soo much for your replies and thoughtfulness and ,
to say the least, Encouragement.Yes,Maz,please send the emails that you discussed.
How do I send you my email address?Best,Kathy

[lynnie_sydney]

Kathy – Sounds like you've taken the most important step on your road to greater wellness: intention. And I agree, it makes sense for you to have stayed inside the box treatment wise when all your training has been in this arena. It's hard for any of us to step outside it. Susan makes a very good point about the need to focus on your gut and liver at this point as well as the yeast issues and that it may serve you well to consult both the AP and the holistic doc. And of course there's the LLMD option. So, it may take a little time to sort out the partnerships you are going to be best served by – but you know you are now on a path. And we'll be here to support in whatever way we can. 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)

[Christina V]

Hi Kathy,

I read something today that I think follows onto Lynnie's comment that “you have taken the most important step – intention“.  Quoting from the book I am reading it says, ” Expectation and belief are important.  More than that they are essential.  First, they motivate you to follow the procedures.  Second they create the mental climate conducive to change.”

I know this struck a chord with me, I hope it is helpful to you.  I wish you wellness. (ps my eldest daughter(21 yrs old) is an RN, she is very into researching AP with me)

warm thoughts, Christina V

[Kim]

Go get 'em, Kathy, you can do this. 🙂

kim

[Maz]

[user=110]hopefull[/user] wrote:

Susan & Maz,Thank you soo much for your replies and thoughtfulness and ,
to say the least, Encouragement.Yes,Maz,please send the emails that you discussed.  ow do I send you my email address?

Kathy, unless you'd prefer I send to your email, I will send you a private message (called a PM for short) on here with the physician info in a few moments. To retrieve it, just go to the top right of this page and click where it will say, “You have 1 new message.”

Peace, Maz

[Author]

Posts