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Re: Diagnostic Help? [Re: vosadrian] #283723 11/08/19 02:50 PM
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Given the non responsive nature of the combination of issues, have you had occasion to think about a trial of antibiotics. Your case sounds inflammatory however in the presence of no or little response to traditional anti inflammatory treatments viewing the progression as an infection may be useful to think over.

Last edited by WhiteCell; 11/08/19 02:51 PM.

Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Diagnostic Help? [Re: vosadrian] #283732 11/10/19 08:32 PM
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Hi, Adrian:

Your assumption about NSD/LSD is correct; it is the best for patients with AS. Fasting would rapidly sort out whether or not Your problems are due to inflammation; it will take FOUR days minimum and six days would be best. Please end fast with about 3-4 oz of EVOliveOil taken in small amounts throughout final day (similar to Edgar Cayce Three Day Apple Diet, which also works wonders).

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Diagnostic Help? [Re: vosadrian] #283733 11/10/19 11:10 PM
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vosadrian Online OP
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Thanks Whitecell and Tacitus,

I am currently seeing a Chiro that is a bit alternative (promised a friend I would see her). She thinks I have some gut issues causing me to be acidic and preventing magnesium absoprtion. She has me on a diet which is like a LSD (not much fruit and only less sweet fruit. No wheat based products, minimal dairy, most vegies OK but no potatoes. No sugar. Lots of white meat). I have been on that for a few weeks. Some digestive related issues are a little improved, but they were minor really. My joint pain does not seem any better. One side effect of this is that I am having trouble maintaining weight as it is pretty low carb (I lost a few kg in the first week, and I am pretty skinny to start with). I am pretty under weight at the moment, and I want to try a fast, but may need to fatten up a little first.

With the antibiotic suggestion. This is something I want to try but I don't know how to. It is hard to find doctors in Australia that will allow me to try something that is not accepted protocol. If I can find some way to convince a doctor I have a condition that needs such an antibiotic treatment I may be able to do it. Any suggestions on that? What antibiotics do I want to use and what conditions do they normally treat?

Cheers,

Adrian

Re: Diagnostic Help? [Re: vosadrian] #283734 11/10/19 11:22 PM
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Maintaining your body weight is essential for health so it is concerning at least to me. I can understand while you want to try alternatives. There are many articles on antibiotics and forms of arthritis. The National Institutes of Health here in the US has many such articles.

Given your signs and symptoms I think convincing a doctor that you're in trouble would be the last thing you would need to do. Your case is fairly significant and should be referred to a center of excellence in my opinion either there or here. Rather than recommend another try of something I would get to that center by hook or by crook.

There are answers for you.

Last edited by WhiteCell; 11/10/19 11:25 PM.

Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Diagnostic Help? [Re: vosadrian] #283735 11/10/19 11:40 PM
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vosadrian Online OP
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The weight thing may seem more dire than I have stated. I am a very active person and have been so for many years. The joint pain is limiting me a lot, but I still a lot of exercise compared to must (but half what I once did). Mostly about 6-8 hours cycling a week at varying intensity. I am lean and trim from this. When coupled with my normal diet, I maintain a BMI of about 21.5-22. With the diet I have tried, the loss of sugar and most carbs etc. caused me to lose some weight quickly (and my cycling performance declined also). So I am not some inactive person who is eating lots and losing weight for no reason, I am just someone who is active and needs calories to maintain weight. If you saw me you would think I looked very healthy, but lean. I wish I felt that way!

Any links to articles on antibiotics and arthritis you mention?

Re: Diagnostic Help? [Re: vosadrian] #283736 11/10/19 11:54 PM
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So as it is now, it appears that you are limited in your activities due to pain which comes and goes and that it is severe at times. Is this correct?

Here is one article which you might find interesting.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3883615/


Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
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