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there is a place in the forum area where you can print out the physicians paper. I also heard that Dr. K will work with any other doctors that are willing to work with her.
Eva 😀
Eva Holloway
GonnaB…
I'm glad you mentioned the ear cartilage problem. I've had some sensitivity and a similar problem for some time on the outer left ear. There are some explanations about this condition… referring to cartilage, connective tissue, etc. So much has been going on the last year or two that I haven't given it the attention I should have. So, we'll have to share what we learn.
Good luck with decisions about your physician. If you see Dr. K, I believe you'll like her. You may already know that there are nice rooms available in Lufkin for a small fee — these made available through the Chamber of Commerce and Hospice for those coming to Lufkin for medical treatment. I believe Dr. K's web site has contact information on this. With the longer days, and good highways, it shouldn't be a bad trip. When we began seeing an AP physician, in the summer we sometimes would drive all the way from NE Texas to Ida Grove, Iowa, going through Tulsa. In the winter was a different story!
AF
Hi Ritchie
Picked up your theory of SD – not caused by infectious disease. How does this explain the many people who have had remission/improvement on AP.
Brendan
Hi
If you look up minocin carefully you will find something about anti–collaganese properties —while this relates to collagen production –there are unproven theories that it works to regulate production of collagen and reduces production where there is over-production —this is why you will find in many cases loss of padding in palms of hands and bottom of feet as well as many sd folks not herxing –Best
richie
Interesting – I have read that tetracyclines actually inhbit anti-collegen processes – which adds even more confusion to mechanisms involved. Either way – if mino helps to either reduce collagen and/or fight infectious source of SD reponse and we are getting results without side effects – then I reckon we stick with it.
The absence of herxing in many with SD by comparison to those with RA may be explained by the high inflamatory status in RA patients and the body's reaction to toxins and waste products.
quick question on your experience with SD. Did finger/hand contratures come into play together or was it one finger/thumb or hand at a time?
As far as the Raynaud's and circulation issue, I found it extremely improved when I started to take Grapeseed extract. I actually could cut my nifedipine from 90 mg to 60 mg and feel no change. I am going to try to cut to 30 mg if all is fine in a month.
JoAnn
I notice that a few of you are dealing w/ Celiac or gluten sensitivites/intolerance. Is this a common thing w/ SD, DM and other rheumatic disease? I was told to omit wheat, dairy, eggs, soy, pork (didn't eat that anyway), sugar, yeast, corn, peanut products and seemingly everything else but celery and bell pepper 2 years ago. Was having severe digestion problems at the time. The Dr. did some food allergy testing and found a moderate allergy to gliaden, a componet of gluten, as I understand it.
I know that when I eat really processed white flour products, I return to stomach problems. I have relaxed on some of the above restrictions….they made it almost impossible to live in the real world. But I do think there is something there w/ the refined wheat products.
It is interesting that so many others with these related diseases have the same food problems. Do you think this is just something becoming more prevalent in our world today, what w/ grains having chemicals, radiation and being genetically modified? Or is there alink between our diseases and our guts???
Would love to hear any ones thoughts on this.
Blessings and beauty your way.
[user=744]gonnaBhealthy[/user] wrote:
I notice that a few of you are dealing w/ Celiac or gluten sensitivites/intolerance. Is this a common thing w/ SD, DM and other rheumatic disease? I was told to omit wheat, dairy, eggs, soy, pork (didn't eat that anyway), sugar, yeast, corn, peanut products and seemingly everything else but celery and bell pepper 2 years ago. Was having severe digestion problems at the time. The Dr. did some food allergy testing and found a moderate allergy to gliaden, a componet of gluten, as I understand it.
I know that when I eat really processed white flour products, I return to stomach problems. I have relaxed on some of the above restrictions….they made it almost impossible to live in the real world. But I do think there is something there w/ the refined wheat products.
It is interesting that so many others with these related diseases have the same food problems. Do you think this is just something becoming more prevalent in our world today, what w/ grains having chemicals, radiation and being genetically modified? Or is there alink between our diseases and our guts???
Would love to hear any ones thoughts on this.
Blessings and beauty your way.
GonnaB,
Dr. K pays a lot of attention to her patients as relates to gluten intolerance. She was invited to be a guest at one of our support group meetings. She spoke on the subject of “Celiac Syndrome” (we invited people in the city to attend also, and had a full house. Dr. K says that people who have chronic related issues do not have to have true Celiac Disease to experience the problems that people with the genetic form of Celiac have.
Once the gastro system has developed all kinds of problems (yeast/fungus/candidiasis/dysbiosis — let's throw parasites in this mix!!!), then these unfriendly organisms are in their element to grow and multiply like crazy! They love an acidic environment.
The following is something that just came to mind, and I think all of you may appreciate this comparison: Several years ago when we were having so many outbreaks of E. Coli connected to our beef/food consumption, a professional on a radio program stated that the reason there was so much E. Coli related to our meat supply was that the cattle were being penned and fed large amounts of grains for a certain period of time before slaughter, which is not what cows were designed to eat. The excess grains to fatten them up to bring more money at sales created a very unhealthy environment in their gut system, and was still in their meat when sold at the supermarket. The professional stated that even if the cattle were taken off the grains for a period of two weeks before being slaughtered, the unfriendly organisms would decrease considerably and our meat would be safer.
It certainly looks like there's a parallel between Dr. K's attention to our “Celiac Syndrome” and the scientist who spoke about the grains causing bad organisms in our meat supply.
I believe that when we become chronically ill, the first place that things begin going wrong is in our gastrointestinal system. A huge part of our immune system resides there. And, we are very dependent upon the healthy organisms manufactured there (along with all the B vitamins manufactured there) to maintain a healthy “balance.” When we become unhealthy, the overgrowth of everything related to unfriendly organisms sets up a good eco system for them, and unfortunately! dysbiosis for us — and the proper pH balance is much more threatening than any of us have ever been taught. Even the ones that should know this, more often than not, tell us we don't have to worry about this pH balance. (Never mind that if the pH balance in our bloodstream gets off even a point of so, death can ensue.) The body is wonderful to beg, borrow, and steal what it needs… for a time, to make sure it can maintain this balance. But, this can't go on forever. Been there, learned that!)
AF
Awesome info. Thanks A Friend.
When I went to a Dr in Denton, Tx, she told me her practice was based a great deal on disorders in the gut. As you say, parasites, food allergy, yeast, etc. She believes that a great part of degenerative diseases, and others I'm sure, come from the GI system being out of order.:sick::sick::sick: Her theory is, if the guts not working, the body can't function correctly. Then the dominoes start falling.
Makes sense to me. She told me I needed protein to help heal. I do a brown rice protein shake every a.m. and she suggested that I eat meat but that I purchase it at Whole Food Market or similiar store. Problem is, the nearest W.F.M. is a good 2 hours away. Makes grocery shopping a little difficult!
A Friend, could you email me about the location, etc of you support group?
Oh yea one more thought. What is dysbiosis? Haven't heard of that one. I have done some reading on the acid/alkaline balance. At the time, I was trying to do a diabetic diet, food allery restrictive diet (as I mentioned before), candida diet, didn't think I could add one more thing in 'cause my mind was on overload!!! I understand about the body stealing from somewhere else….but can't do it for long. Thanks for the reminder.
That is great news that Dr. K is also up on the Celiac thing. Awesome!
Blessings
gonnaB,
Dr. K also made me go on a gluten-free diet. She told me that it would help with my whole body working better. She also made sure I took a good probiotic at all time to keep my gut healthy. I did have a blood test done, it came back negative, but she asked me to stay on the gluten-free diet anyway. HEB carries gluten-free foods and today I went to Wal-Mart to get some cereal for my grandson and found two cereals I like to be gluten-free: Rice and Corn-checks. I know Whole Foods Market has lots of stuff, so once in awhile my husband and I go to the WFM and stock up on what I like and can eat. I love their Blueberry muffins and orange-cranberry scones.
Dr. K also has to eat gluten-dree that is why she is so interested in this health issue.
Eva 😀
Eva Holloway
[user=744]gonnaBhealthy[/user] wrote:
Awesome info. Thanks A Friend.
When I went to a Dr in Denton, Tx, she told me her practice was based a great deal on disorders in the gut. As you say, parasites, food allergy, yeast, etc. She believes that a great part of degenerative diseases, and others I'm sure, come from the GI system being out of order.:sick::sick::sick: Her theory is, if the guts not working, the body can't function correctly. Then the dominoes start falling.
Makes sense to me. She told me I needed protein to help heal. I do a brown rice protein shake every a.m. and she suggested that I eat meat but that I purchase it at Whole Food Market or similiar store. Problem is, the nearest W.F.M. is a good 2 hours away. Makes grocery shopping a little difficult!
AF replies:
Sounds like you have a very knowledgeable physician. Finding one of those can be like looking for a needle in a haystack!! GonnaB, there are some health food stores with frozen free-range meats and poultry. Also, it might be worth a call to the one nearest you, and have them send you a list of some options you might not know about. One of my favorite “meats” is ground free-range turkey. With the right seasoning, it is very versatile. Are you Blood Type A, O, or which? I'm an A, and only learned the last couple of years that this blood type is usually lacking in HCl needed to zap germs as they enter the digestive system and needed for digestion of foods and absorption of nutrients. Because of my terrible acidity (I'm sure it has been for years), I only eat very little beef or pork, and use Super Digestive Enzymes during a meal to help with digestion. AFGonnaB writes: A Friend, could you email me about the location, etc of you support group?
AF replies: Will do.GonnaB wrote: Oh yea one more thought. What is dysbiosis? Haven't heard of that one. I have done some reading on the acid/alkaline balance. At the time, I was trying to do a diabetic diet, food allery restrictive diet (as I mentioned before), candida diet, didn't think I could add one more thing in 'cause my mind was on overload!!! I understand about the body stealing from somewhere else….but can't do it for long. Thanks for the reminder.
That is great news that Dr. K is also up on the Celiac thing. Awesome!
BlessingsAF replies: You can read the Celiac information on her web site.
Also, I am pasting some links relating to Dysbiosis with input authored by Dr. Leo Galland, whose work has been a great source of information for me…also some additional links about food-allergy:FOUNDATION FOR INTEGRATED MEDICINE
[Everything on this site appears very worthwhile.]
http://mdheal.org/whatis.htm
Note by Dr. Leo Galland…
http://mdheal.org/intro.htm
His introduction… with a concise chart he designed showing:
1) Ancient Insights
2) Scientific Findings
3) Power Healing Solutions
http://www.mdheal.org/parasites.htmDysbiosis… Dr. Leo Galland
Other links from another site:[/size]
http://www.food-allergy.org/root2.html
http://www.food-allergy.org/root3.html
Getting to the Root of the Problem
My husband had his first visit with Dr. K May 4th and she is the best. We were so pleased with her. She spent a lot of time with us, totally believes in AP and will work with your local doctors if you want. We are lucky that our general doc and rheumy have both agreed to work with her. Our follow-up visit is on June 8th. I hope you have as good an experience as we did.
I know I say our visit but she made me feel so much a part of the healing process. Her first words when she found out my husband has scleroderma was “I love scleroderma because it responds to well to treatment.” And the visit went uphill from there or is it downhill? I really am directionally challenged.
Our drive is about 4 hours and was so worth it. Best of health to you.
I also have a callous on my ear, it has been there for about 2years also. I keep forgetting to say anything to my doctor because I have some many other things going on……
[user=1356]lin[/user] wrote:
I also have a callous on my ear, it has been there for about 2years also. I keep forgetting to say anything to my doctor because I have some many other things going on……
Hi Lin,
Saw you were new to the support forum and just wanted to send a warm welcome your way!
If you want to add your diagnosis and meds to your sig line, this is easy to do. It will appear automatically each time you post. Just go to the My Account tab at the top of the page and click on the tab that says “Profile.” You can add as much personal info as you like and the bit to add your sig line is right at the bottom of the form to fill out. It can really help others to reply to posts when you add a sig line and saves you having to repeat yourself, too. 😉
Thanks for joining us and looking forward to getting to know you!
Peace, Maz
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