Have You Become Your Own Doctor?

[lajones2]

 

Hello All!

Well, I've been away for a while.  I have been trying to find out why on earth can't my feet stop swelling.  I mean my ankles give me NO relief and I am tired of walking with canes and cruches!

I am presently interviewing colleges to go back to school to study Immunology.  I want to know about these diseases and be able to offer some help to others in our position. If I can get my mind wrapped around taking this GRE I will start in Aug of 2010.  Please send prayers and well wishes my way.

It is so amazing to me how many doctors dismiss this protocal.  I nicely dismissed a doctor who told me 3 months ago to not come back to his office because all of his patients were walking fine with medication and my refusal is “disturbing”.  Well, I am now off of prednisone, and take my occasional Naproxen.  And I still have tremendous ankle pain, but can you believe that I feel better now than I did while on hydrocortisone, prednisone, and kenelog shots? Well I do.  Dr. S constantly tells me to be patient.  I will be going back to Iowa in Nov for my second treatment.

Let's get to the reason for this post. There is a magazine called “Alternative Therapies” which deals with info on higher grade alternative medicines.  The magazine is actually made for doctors but I'm sure the people on this site (Lynnie, Maz, etc.) will definitely get it! There is a Conference on October 29th to November 1st from the American Academy of Environmental Medicine called Body Under Siege:Inflammation and Autoimmunity.  On the site they tell you the daily schedule and there is a series mycoplasmas and autoimmune diseases.  Doctors get credit for going and you can go as a guest of a doctor or if you are in school, a nurse, other stuff.  Check it out at http://www.aaemonline.org/CFP.html and send your doctor!

I plan to go if my budget allows. Thanks for all you do.

LJ

Chicago

 

 

[Rockin Annie]

Hi LJ,

Wow thats sounds great, I was also inrolled to go to college  to study natropathy before having a hiking accident, which kept me out of action for a while, then I never thought about doing it again with the on set of RA. 

I am sorry you are having so much trouble with you feet, I can actually relate to that as for the last 2 weeks have had trouble with my feet swelling and having trouble dancing, and I can't do without my dancing :blush:.  I think it might have been my change over to MSM powder instead of tablets, because I have gone back to the tabs and feet are fine now apart from the usual pain.

I agree with you about feeling better off the conventional meds, I am down to 2mg of pred and feel so good not been on anything else.

Good luck with your new adventure and hope you do find a solution to your feet sweeling soon.

………………….Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Christina V]

Hi lajones,

Has Dr. S suggested you try a gluten / dairy free diet?  I only ask because my AP doctor put me straight onto this before I even started my AP treatment.  The swelling in my ankles and knees, was gone within the first two weeks, and the pain with it.  It has not returned.  I still have trouble with my hands, wrists and shoulders but nowhere near as bad as it was.

I wish you well in your scholastic endeavours.

All the best, Christina

[hotspur2904]

Hi LJ,

“Have you become your own doctor?”  I think this a really interesting question because as a newcomer to this board who had never heard of AP or the RBF until a few weeks ago I have to say I am beginning to feel like that!

Whilst I'm waiting to see my doctors to convince them to put me on AP all I seem to be doing is reading…..reading, reading, reading! Even to the point I go to bed with all the various terminologies flying around my head.

Whether naive or not, I've always been someone who took what their doctor said as gospel.  I've never bothered reading health books, dictionaries etc because I know a few people who do who everytime they have a cough or cold believe they have some nasty disease or illnesss.

I now find myself cross referencing articles on AP with more articles on related subjects and I too am beginning to feel like I have numerous ailments/bugs/issues, most of which I have never even heard of before.

You like many experienced APer's on here obviously have a lot of knowledge of various related subjects, most of which I could never even dream of having and I admire and respect you all for that. However I am now somewhat concerned that unless I start becoming a doctor, which I'm not sure I want to do, I won't have enough knowledge to beat my PsA.  Please dont get me wrong, I want the knowledge to combat the issues I have however I dont want to turn into someone who ends up trying to diagnose other maybe not relevant issues due to relatively small amount of knowledge that I have.  As the saying goes “a little knowledge can be dangerous!” and my 2 weeks of reading various articles on PsA and AP isnt really the same as seven years in training as a doctor.

Maybe I'm being naive or not giving myself enough credit to be able to tackle this myself. Either way I would really appreciate yours and anyone elses thoughts.

I hope your ankles improve

Simon

 

[lynnie_sydney]

However I am now somewhat concerned that unless I start becoming a doctor, which I'm not sure I want to do, I won't have enough knowledge to beat my PsA.

I'm betting you will Simon! However, take it slow. There's nothing that quite beats accumulated wisdom and experience over time. I did very well with reading the book, the various sections of this website and rheumatic.org. and the forums for several years. In fact, I pretty well went into remission symptom-wise. Then 5 years in, with my RF having dropped from the high 600's to mid 300's but stalled there, I decided I wasnt going to wait around and see if something aggressive would kick in later, as it did with my Mother in her mid 60's. That's when I started to learn about the dietary influences on chronic illnesses and a whole lot more. Changing my diet got rid of the background permanent ache in my knees, for instance. I hadnt even related that to rheumatoid – I thought that was a combination of age and dodgy knees! 

All this didnt negate my first 5 years. They were a resounding success! I just decided not to keep resting on my laurels, to keep stretching the parameters of my knowledge and realised that this is a journey rather than a destination. I'm betting you do just fine:D. 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]

There's nothing that quite beats accumulated wisdom and experience over time.

Simon, as Lynnie (quoted above) said, nothing beats accumulated wisdom, and as you would realize Wisdom = Applied Knowledge.

So while you and I and many other newbies are still acquiring the knowledge (which seems overwhelming), we have the benefit of Lynnies', Mazs', Kims' and so many others – all ready Applied Knowledge – to help us wade through it all.  We just need to be patient and learn as we go along, so we too can apply the knowledge and in turn become as wise as them.

And on a lighter note, I still can't make those little quote boxes, at the top of a post, so as you see I have improvised!!!!!!!!!!!!!!

Cheers, Christina

[hotspur2904]

[user=1351]Christina V[/user] wrote:

There's nothing that quite beats accumulated wisdom and experience over time.

Simon, as Lynnie (quoted above) said, nothing beats accumulated wisdom, and as you would realize Wisdom = Applied Knowledge.

So while you and I and many other newbies are still acquiring the knowledge (which seems overwhelming), we have the benefit of Lynnies', Mazs', Kims' and so many others – all ready Applied Knowledge – to help us wade through it all.  We just need to be patient and learn as we go along, so we too can apply the knowledge and in turn become as wise as them.

And on a lighter note, I still can't make those little quote boxes, at the top of a post, so as you see I have improvised!!!!!!!!!!!!!!

Cheers, Christina

Hi Christina, I know exactly where you're coming from and didnt mean to be negative.  I guess I've never sold anything that I havent been 100% familiar and au fait with and I'm still daunted by pitching to 2 doctors.

S 🙂

[lynnie_sydney]

Christina – copy the text from the original post (highlight it then click on top 3rd button from left). Then paste it in your new post (click on 4th button from left). Then highlight the text and click on the quote marks – 4th button from right. 😉 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)

[katieb]

Hi LJ – That is a brave and positive step to take and I am sending prayers and wishes that you will succeed and find the right college to study your immunology !!

Hi Simon – Did you come across my personal thread on here at all ? Here is a link to it :

http://www.rbfbb.org/view_topic.php?id=1975&forum_id=3

I think you can only try to read and absorb so much yourself before you see your doctors. This question is, are you completely convinced about the AP protocol ? I became convinced very early on after reading someone's testimonial which rang very true with me, and after reading the New Arthritis Breakthrough book.

Yes I was quite nervous about putting this to my GP, but I decided to take the book along and invite her to read it herself, rather than trying to explain the intricacies. There is a wonderful passage in the front of the book which goes something like 'Your physician should have the opportunity to read this book.', which I read out to her. And she agreed to take it away and read it. It took her ages, but she was still prepared to prescribe the mino before she finished reading it (perhaps just to get rid of me….). I know I was very lucky with her, but perhaps it's worth a try.

There are also some info sheets from Gateshead Rheumatology Department which you might find useful – attaching one here and the other to the next post.

Best of luck !   Katie 😀

[katieb]

Hi Simon – Here's the other info sheet.

Katie

[orchid]

LJ –

It's good to see you on the board again. I remember you because you're a fellow Chicagoan, like me! Although progess sounds slow – it's still progress…just remember that.

I personally feel the answer that doctor gave you is “disturbing.” I'm still amazed by the sheer number of unprofessional, uncaring doctors out there who don't even DO their own research – just take what they learned in medical school and then spend the rest of their lives writing scripts for drugs. That attitude of doctors is partly what killed my dad – I feel. All those drugs did is make him more confused and he just couldn't take it anymore. When I put my dad on a healthier diet and he was actually “moving” the food — his doctor told him “that won't work,” even though it WAS helping. Idiot.

I do feel like my own doctor — I say that all the time. My sister also has health issues and we talk about self-treating all the time…it's truly ridiculous and you wish you could just put all your trust in one doctor and have them get you better – it's stressful and time consuming and “if we're self-treating, what are we paying them for?!” I guess no one cares about your health more than YOU so you go with your gut and trust your instincts and I believe that will get your much further.

I agree about trying the diet avenue if you haven't already. A lot of people find relief that way.

Well – keep plugging along, you'll get there!

[hotspur2904]

[user=467]katieb[/user] wrote:

Hi Simon – Here's the other info sheet.

Katie

Thanks Katie, the NHS factsheets will be useful I'm sure and yes I did read your personal history. It's all been really useful.  Will keep you posted re my 2 x doctors visits next week.

Take care

S

[lajones2]

Thank you all for the responses and well wishes! I am kinda spoiled and have never been a cook and tried the gluten free way and became scared to eat anything. I lost so much weight (and I'm already small) that I became weak.  Christina I am now trying to find ways to eat less gluten and feel better and thank you for that info.

Simon, for the last two years I have worked at a major University here in Chicago with doctors.  They all are constantly sick or depressed.  I asked one doctor how he felt about the overabundance of prescription medicine given to the world and he told me that he feels that everyone has a condition and will need medication and he will be on high cholesterol medication for the rest of his life!  I'm thinking, “What the hell?”  These are the people who are responsible for me getting better? I can't go to sleep sometimes from staying up reading these medical journals.  I am a community worker for goodness sake, but I think that I would be a hell of a lot kinder and curious to treat patients if I were a doctor.

Point blank, the doctors hate when you can talk to them about stuff that they were ONLY supposed to be knowledgeable about. I never try to challenge their authority or knowledge, I just simply ask that they work WITH me to HELP me live a better quality of life but somehow they get offended.

Maybe I'm being naive or not giving myself enough credit to be able to tackle this myself. Either way I would really appreciate yours and anyone elses thoughts.-SIMON

Simon, NO you are not being naive.  Doctors are qualified to write prescriptions and give you tests.  I do not want to negate the fact that they went to school and know many more terms and all the other education.  But I came to the conclusion that STRONG BELIEF BRINGS CHANGE.  I believe in this AP tx.  I envision myself in a better place so I have to stay true to myself.  METHOTREXATE (Cancer drug):doh:, prednisone (makes matters worse after better), Enbrel (great relief but causes other problems. My father had a heart attack after using it for two months).  I'd rather take my chances on the AP. What do you think?  People already think I'm a quack so I might as well go all the way.:dude:

I could talk on this forever, but one more thing if all of you all haven't fallen asleep on this writing.  I saw something that states that the AI diseases are caused by extreme allergies and LDA's (Low Dose Allergens) are given to reduce the inflammation. Maybe this will help with the gluten and other allergens.

http://www.aaemonline.org/workshops.html

LDA Immunotherapy – Ultra Low Dose Enzyme Activated Immunotherapy (formerly known as EPD) [/b]

LDA (short for “low dose allergens”, or ultra low dose enzyme activated immunotherapy) is a method of immunotherapy enhanced by a minute dose of the enzyme, beta glucuronidase (dose is 10-13). The beta glucuronidase activates extremely miniscule doses of various allergens (10-6 to 10-17) and stimulates the production of T-suppressor cells. These cells actively “switch off” helper cells that are erroneously causing patients to be ill by misidentifying normal substances in the body to be allergens. T-cells may live for long periods of time in the bloodstream, so LDA needs to be administered only every 2 months at first, and then less often as time passes, generally with one to three tiny (1/20 c.c.) intradermal (in the first layer of skin) injections on the inner aspect of the forearm.

LDA is used to treat all types of allergy, sensitivity and intolerance to inhalants (pollens, dust, mites, danders, etc.), foods and chemicals. It is used to treat such conditions as seasonal and perennial hay fever, asthma, all types of food allergy and many other problems. It is also used to treat autoimmune diseases such as rheumatoid arthritis and ankylosing spondylitis. Since LDA uses mixtures for treatment, testing is usually not required.

Let me know if anyone has heard of or tried this therapy.

Good Living,

LJ

[lajones2]

Aw thanks Orchid.  I pray you are doing well in the Chi. And I am happy to report that my RF dropped from 330 to 51. :roll-laugh:But my doctor said “RF doesn't show anything!” I still got happy.  I almost had to make him take the test. But I'm still optimistic about the progress. My ANA is still 1280 but we will see how that turns out in the future.

This site gives me hope and always has something new. Thanks

[lynnie_sydney]

Rf dropped from 330 to 51 nothing to celebrate? I would be swinging from the rafters! Hope the ANA follows suit quick smart. 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)

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