diet

[lizbeth]

Hi Guys,

Just thought I'd bring up the question about diet, I know a lot of dr's are recommending gluten/dairy free but do you think this is really necessary?  I don't recall this in dr browns book (or maybe it's their and I have brain fog)!!  Please let me know what you think.

Thanks

[lynnie_sydney]

Lizbeth – No it's not in the book. However, like many things, there have been advances and nuances developed in broader approaches to treatment that still incorporate abx at their heart. You'll also find experienced AP docs in the U.S. all have developed their own particular approach to treatment – much depending on what they have found works well. And, many times, it is individualised for the specific patient. 

I was very successful on 100mg of straight mino MWF for just under 5 years. But I could tell that it was still lurking in my joints, my neck was still stiff and cracking and I had just got used to a lower amount of energy than most of my friends have. However, for all that time, I was very satisfied with the disappearance of the palindromic flares, which had been so excruciatingly painful that I just wanted to die. It was in 2008 that I decided to step it up and go see someone whom I had researched as having been successful in this field to see if I could push treatment success further.

You have gone straight to someone who uses combo abx, supplements and dietary measures in combination with each other. Someone who also believes in Lyme-like illnesses here and someone who has both studied Dr Brown's protocol and the people who have come after him. She and LW have been at this (very successfully) for 25+ years and have developed and refined their approach as they have gone along.

Many APdocs these days – and many LLMD's – believe that Leaky Gut and food sensitivities are a problem suffered by all people with chronic illness and that they  need to be addressed. Food sensitivities are something Dr D and LW are passionate about in terms of being an integral part of their protocols. But Dr D WILL tell you that, for those who cant/wont take on the dietary component, they will still treat with abx. (BTW, even Dr Brown used to use more than tetracyclines in treatment protocols for those who needed it).  

Lizbeth, I know it can seem overwhelming at first to take on board all this new information. So you may want to see LW first and perhaps Dr D again before you decide what you want to do. And it is your decision. All I can tell you is that, in my own case, I started on a gluten and dairy free diet 8 weeks before I went to see them. And a permanent background ache in both knees (that I hadnt even connected to my condition) resolved during that time. 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)

[Peach73]

My AP doc has me on a gluten-free diet and told me to limit dairy.  I knew I had a problem with gluten before I saw her but she confirmed celiac to me.  I'm loving this diet and how it makes me feel!  There is a learning curve and I'm still trying to figure out the hidden gluten things but I do feel better…  It could be a combination of AP and the gluten-free diet but whatever it is..I feel pretty darn good!  I walked for exercise yesterday and plan to do it again today after work!  Before, the fatigue and foot pain wouldn't allow it.  I can't wait to take a walk now…and its only been a week since starting this…hope it continues 🙂  I say…we are what we eat… I now have a fridge stocked with fresh fruit and veggies 🙂

[bonnielou]

I think a healthy diet is essential to good health. That said — it doesn't necessarily have to be gluten free or dairy free — it depends on what you need. My natural medicine physician tested me for food allergies/inflammation — and gave me a detailed list of what to avoid. I can't have milk anymore, but I can still have yogurt and some cheeses.

I am sitting here eating a salad of romaine lettuce, beets, tomatoes, avocado, red onions, cucumbers, boiled chicken and a touch of parmesan. It's wonderful, and it's healthy for me. It might not be the best choice for you. I always thought I ate pretty well, but I kicked it up a couple of notches when I got sick. I think of food now the same way I think of medicine, exercise and supplements — another tool in my arsenal to get and keep me well.

I miss baking. I miss cheeseburgers and fries. I still have treats once in awhile — but they are special treats, not part of my daily routine. It's a worthy trade. I feel darn good these days.

Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[lizbeth]

Thanks for all your answers.  It is a tough diet and I guess it's something I don't want to do but know I have to!!  I'm like a spoilt child who doesn't want vegies!  I do feel overwhelmed with information but am thankful for all your support and kick up the bum when needed:)

[Eva Holloway]

lizbeth,

I have been on facebook for awhile and they have several gluten-free sites which give out some exellent gluten-free recepis weekly if not more. I found two books, but they are somewhat over whelming. I tried some of their receepis and they are good. Found a place in San Antonio that only makes gluten-free cakes and meals, so next weekend when we go their, I will splurge and go to the Aussie Bakery and Cafe and have my cake and eat it. They also have a site that give you recepis for the crockpot and they made their yogurt in the crockpot, I haven't tried that yet, but will do it either this week or beginning of next week, it look so easy to do. Don't be discouraged, there are lots of places that carry gluten-free products, even at Wal-Mart. I buy a brand name cereal that is gluten-free.

Eva:D

http://www.GlutenFreeChecklist.com“

Eva Holloway

[Roz]

Hi Bonnie,

I hear you on missing chesseburgers, it's not the same but at this hamburger place close by they do a lettuce wrap burger for me instead of the bread.

I have a teenager so I have to to take him out at times.

Your lunch sounds fab.

Hugs, Roz

 

 

 

[user=61]bonnielou[/user] wrote:

I think a healthy diet is essential to good health. That said — it doesn't necessarily have to be gluten free or dairy free — it depends on what you need. My natural medicine physician tested me for food allergies/inflammation — and gave me a detailed list of what to avoid. I can't have milk anymore, but I can still have yogurt and some cheeses.

I am sitting here eating a salad of romaine lettuce, beets, tomatoes, avocado, red onions, cucumbers, boiled chicken and a touch of parmesan. It's wonderful, and it's healthy for me. It might not be the best choice for you. I always thought I ate pretty well, but I kicked it up a couple of notches when I got sick. I think of food now the same way I think of medicine, exercise and supplements — another tool in my arsenal to get and keep me well.

I miss baking. I miss cheeseburgers and fries. I still have treats once in awhile — but they are special treats, not part of my daily routine. It's a worthy trade. I feel darn good these days.

Bonnie

[DragonSlayer]

Hi, lizbeth:

I have been interested in the subject of diet and disease for quite a long time, and my particular disease (AS) is absolutely all about diet–can't tell You how disturbing this fact is for me but especially for others.  Many sufferers are still in denial about this connection, and would prefer their doctors just find a magic pill.  The magic pills harmed me enough and disease advanced so dramatically that I had few choices.

When I was a vegetarian, I was never proselytizing about it–I did not then know whether it was right for others, but learned only years late that it was very wrong for me.  Some joked that I needed a good steak!  They were right…

I do not have RA, but will share with You suggestions on how diet might affect some cases of RA.  It cannot be the same as AS, so I am very reluctant to suggest anything of my own low-starch experience.

But I have read about Dr. Mercola, and his experience with Dr. Brown's protocol which he might still employ to some extent, but he prefers that his patients follow a primary eating guide that seems to eliminate all grains.

The fellow who figured out AS had to differentiate between early symptoms of RA and AS and he developed methods and these held the key to his opinion about the cause of RA:  Professor Ebringer believes RA is due to an occult P. mirabilis infection and people with this condition do not necessarily have to give up very much, but especially should eat fish and take quite a bit of omega 3 oils (11g daily), but also drink plenty of cranberry or grape juices, which apparently makes tissue slippery to the pathogen, and it is expelled more easily.  Ebringer was reluctant to suggest antibiotics, but does believe that Leaky Gut Syndrome (LGS) might play some role in many of these arthritides–albeit less so for RA than AS, in which LGS is a primary cause after the bacterium that causes the basic reaction.

With RA, I don't believe there need be such an onerous diet, once a person is able to achieve remission–and then they should “experiment” by slowly adding things back into their diets and perhaps keeping a detailed diary.

Good Luck, with whatever You try–and I hope that You will keep us updated,
John

[lizbeth]

A little update on the diet fiasco!!  I spent the day trialing gluten/dairy free products and I am feeling a lot more positive.  Thanks to all of you who have taken the time to explain the diet reasoning.  All I need to find now is a descent bread (gluten free that tastes like bread).

P.S. Rice milk not so nice:sick:

[lynnie_sydney]

Lizbeth –  There is a good one from Country Life Breads that you can get on the supermarket shelves (Coles and Woolworths) that's Gluten AND Dairy Free. It's the one with the bluey-green label. You need to make sure to get the right one – some of their products are gluten, wheat and yeast free but contain dairy – so ensure you read the back panel. It's so much better than similar breads you can buy in health-type outlets (tend to taste like a brick!). It's sliced and they deliver 3 times a week (Monday, Wednesday and Friday here). LW will have a sample of the wrapper of this in her office.

BTW, if you drink instant coffee, the ONLY one that doesnt use wheat in the processing is Moccona Classic. It's never stated on the other labels because it's not an active ingredient, but one of those sources of hidden gluten that can trip you up. And if you drink coffee from cafes, steer clear of cappucinos – the chocolate sprinkle contains both gluten and dairy. And many OTC medications and supplements contain dairy and sometimes gluten, so be careful here also. All these things can make a difference – perhaps making some believe cutting those things out makes no difference, when in fact they are still consuming them unknowingly. 

Welcome to a new world!: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)

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