Venting – had my wrist slapped on another board

[KAnderson]

Maz my avatar doesnt really signify anything…just thought it was kinda cute until I upload something fitting 😎

[katie]

Hi Rosemary.  What ways do you think research money should be redirected?  We still need to find the cause (or causes) of AI diseases and prevent them.

[Jennhere]

I agree with Rosemary- I think research money should be re-directed into studies on how to get the Medical community at large to open up to new ideas about R.A. and it's evil cousins.  😉

Katie- I believe the case for what exactly the causes are has been made in the A.P. community.  We wouldn't be winning against this disease if we had it all wrong.  Sure, we don't have it all right, but it's not like we're sniffing glue and telling others that we're cured.  There's a compelling arguement for taking A.P., people finding long-term relief, some serious, out-right remissions and little or no side-effects with A.P..  Why on earth research money isn't POURING into A.P. is obvious…and very disturbing.  😕

Jenn

[PatriciaNZ]

Hi Katie- and others- there really is a lot of information about how these AI diseases start- and if we all stayed 100% healthy, had no infections, didnt stress :)at all, did not contact viruses we may be okay;) This could be pretty much impossible.

 So when we get sick with any AI disease we need to aim to get better-finding something that will make us better and better. We need to take resposibility to “Heal” ourselves and when we find what helps us  “Spread the word”.

Rosemary has summed it up by saying

Best thing we can do is get well ourselves and show them.:):):)

My health has improved with detoxing, diet and herbs(I have Palindromic Rheumatism- a cousin to RA) If this had not worked AP could have been a choice- from what I have read on this site it has helped so many.:blush:

[Jennhere]

I think I have PRA, too.  That's where I've ended up in the dx mystery.   If docs had only considered it.  I never dreamed so many professionals could dx me with “depression” as a result of joint pain.   I wasted three years chasing a dx…other than depression.  If only the whole “auto-immune” mystery nonsense was erradicated from the field, I think many others could benefit – as you did- from a dietary, etc approach.  As long as there's this aura of mystery shadowing Rheumatic diseases- we have little hope other than aliens coming down from space to give us the elusive cure. 

Currently, so much time is wasted, allowing the disease to entrench itself deep inside our tissues while we try to convince doctors that something is wrong with our health.  **** but oh, how the pharmeceutical companies benefit from our ill health.  So why bother looking for a cure?

Jenn

[PatriciaNZ]

Jenn- I was lucky to find a Naturpath who described what and how it all happens- one week after my first flare-  this was even before I had the PR diagnosed. Being sick and sore I only half believed but I did believe what she said to me about the deep healing that would be needed  make myself better. And I listened to her how she said it would take time- at least 1-2 years.

To find Naturpaths and/or Doctors who listen and believe that  the “Road” to healing  we are on actually works  is very important. 🙂 We have to just keep on spreading the word to the world on what has helped us. 🙂

[Jennhere]

I'm so glad you're doing well on diet alone.  It's a great encouragement to me!  I definitely use diet in conjunction with the A.P.  Maybe if I'd been dxed sooner and had the information about A.P. at the onset….?  Who knows!! 

Even after I found out about A.P., I took an additional year just to TAKE antibiotics.  I had been shut down by numerous docs who 1) said I was negative for everything they could test me for and 2) no support… left me afraid to try it on my own.  A.P. was still not even approved for R.A. at this point!  OH, how I've learned not to listen to doctors who practice modern voo-doo medicine!:roll-laugh:  “It's “auto-immune…!!  We don't understand the immune system…!!  Now, take this and that and suppress your immune system!  That will work!”  …………Oh, my!:shock:

Jenn

[lynnie_sydney]

Hi Jenn – I know you are still coping with “niggles” rather than “just shoot me NOW” pain. That is very much my story with AP and, of course, I too have a PRA diagnosis (now 20 years ). If you've read any of my recent updates you'll know that diet (healing my leaky gut) is now a part of the protocol as prescribed by my new AP doc – leaky gut is something she believes ALL people with a chronic illness suffer from. Whilst the term Leaky Gut seems to have become 'flavour of the month' recently, this doc has been treating this way for over 20 years. It's the first time I've worked with an AP doc since being on AP (my GP was prescribing till now) and I researched carefully before I selected one. I am SO noticing a difference – even though all I seemed to have left was the occasional niggle and achey knees. It's only the absence of some other things that have made me realise that there was, in fact, more than this. Some aches that I had not even related to the PRA seem to have gone, especially late evening ones that I'd just put down to being the wrong side of 50!! I'll post another update in about 10 days time (2 months into protocol and after a phone consult) in Personal History and Progress. However, I thought I'd ask if you've read any of my stuff there (maybe also original testimonial?). It may just ring some bells for you and may even be of assistance to help you to your next level of healing. For me, all this is somehow confirming that this (like everything else in life it seems) is a journey rather than a destination. Be well Jenn. 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)

[katie]

I still don't understand how money to find the root cause of AI or mixed connective tissue disease can practically be transferred into money to educate doctors.  I'm not denying your success at all.  But I'm afraid that the way things work research money isn't likely to make it  into studies on how to get the medical community to open up to new ideas about R.A., et al.  It would seem there is going to have to be a new source to fund that. 

 

[Jo]

[user=448]katie[/user] wrote:

I still don't understand how money to find the root cause of AI or mixed connective tissue disease can practically be transferred into money to educate doctors.  I'm not denying your success at all.  But I'm afraid that the way things work research money isn't likely to make it  into studies on how to get the medical community to open up to new ideas about R.A., et al.  It would seem there is going to have to be a new source to fund that. 

 

As long as you don't mind being the poor cousin, research is indeed going on, and will filter down.

Lyme disease research, Gulf War Veteran research, and Multiple Sclerosis research.

All of these have lots of money going into various researches that will benifit us.

We already benifit from the GWV research by the very existence of the PCR mycoplasma testing.  MUltiple Sclerosis has added micocycline to interferon as an official convential protocol. And Lyme disease is revealing many things, and fighting doctors and the law to recognize chronic bacterial mycoplasma infections.

The number of research papers that state that mycoplasma is associated with various auto immune diseases is astounding. It's stated as a known fact by these researchers.  Some of them even state which ones for which illness.

So it is happening, and the fact that the money is specified for other members of the auto immune family, doesn't stop us from benifiting from it.

Blessings

Jo

It's happening everywhere.

[Jennhere]

[user=448]katie[/user] wrote:

I still don't understand how money to find the root cause of AI or mixed connective tissue disease can practically be transferred into money to educate doctors.  I'm not denying your success at all.  But I'm afraid that the way things work research money isn't likely to make it  into studies on how to get the medical community to open up to new ideas about R.A., et al.  It would seem there is going to have to be a new source to fund that. 

 

Oh, Katie, stop trying to understand the practicality of my suggestion.  I was being facetious.   The little wink at the end of the statement should have clued you in.

Jenn

[shela sd]

it must be their own beliefs (denials) that are under threat of scrutiny.  that's what censorship is about.;)

[maz.aust]

[user=30]lynnie_sydney[/user] wrote:

So happy for you Maz-in-Melbourne!! That is a great result this early and you must be pleased. And I'm really glad that I was able to be of assistance to you re Dr D. I'll look forward to more news next week after you've seen the naturopath – I found her delightful. 

All is well with me. I noticed that the IPRS Board is down and I do hope they are not experiencing major problems, they provide such a supportive service for so many people with PR/PRA. Have a great weekend. Lynnie

  
P. S. Your 3 day excruciating 'episodes' sound very much like mine used to be. Thankfully now a distant memory.    

Hi Lyn,

Saw the Naturopath on Mon – and she did find a couple of nasty bugs, like rickettsia and something else that is equally rare & obscure & I have forgotten what is is – but, when I see Dr D this coming Mon she can confirm what it is (I will write it down this time….lol)

Back to the LW (the naturopath), she said it was very very mild & hidden, but there nevertheless and she was not at all surprised it hadn't showed up in my blood works.  The good news is that I don't need any supplements, only advice so far is to keep watching my diet and that she expected Dr D to prescribe very low dose antibiotics.  It was her opinion as I had caught it so early in my PR that it was possible to put it into full remission quite quickly (I have no idea how) and that is great news for me.

I will be forever indebted to you for your help, thank you.

On another subject I have found a naturopath in northern NSW who is on the same path as LW – would you like her address/email address or ph no??? If so email me at home….  (she wants to get in touch with LW herself to share treatment plans &  findings etc — so that in itself is very promising)

Maz

 

 

 

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[lynnie_sydney]

Great Maz-in-Melbourne! I'll be in touch by email. 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)

[maz.aust]

[user=30]lynnie_sydney[/user] wrote:

Great Maz-in-Melbourne! I'll be in touch by email. Lynnie

Don't forget I don't work Mon's

Look forward to hearing from you.

 

Maz-Aust

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Author]

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