So depressed

[Lynne G.SD]

Hey Pip;
I thought I was the only nut to eat food from the garden without washing it. hehehe.Since the garden is right next to my greenhouse,where I am for at least 7 hour a day,I just go pull a carrot and rub it on my pants to get the dirt off,lunch is usually as I work,a pepper,a cuke,a tomato,carrots,purple and Portugese beans as well as snow peas.I just snack all day.The supper is a repeat along with lots of meat as doc says we need that kind of protein when sick

[A Friend]

Lynne G./SD wrote:

Hey Pip;
I thought I was the only nut to eat food from the garden without washing it. hehehe.Since the garden is right next to my greenhouse,where I am for at least 7 hour a day,I just go pull a carrot and rub it on my pants to get the dirt off,lunch is usually as I work,a pepper,a cuke,a tomato,carrots,purple and Portugese beans as well as snow peas.I just snack all day.The supper is a repeat along with lots of meat as doc says we need that kind of protein when sick.

Lynne G, All…
I nearly always seem to agree with Lynne G, but with the statement above that her doc says, my own experience was just the opposite when I went on AP. For some of us [especially people with Blood Type A who are often found to be lacking in HCL/hydrochloric acid needed to digest meat and release amino acids needed by the body’s metabolic system] eating a lot of meat can cause a buildup of acidic wastes in the body, making us overly acidic and causing more pain when our minerals are used up when the body “borrows” them constantly to help with digestion. The AP medication also has a tendency to make us acidic. This actually happened to me when starting AP, before I learned what was happening. When I was first on AP, my feet and other body parts began to hurt (acidic waste is often stored in the feet and hands, far away from vital organs). Once I read what Dr. Balch wrote about meat and acidic waste and pain, and I cut red meat and pork from my diet, the pain almost immediately began going away.

AF

[Anonymous]

A Friend,
Have you toped eating meat completely?
Linda L.

[Pip]

Lynne!

Hope you’re using organic soil…and none with the toxic sludge. How they got that OK’ed is beyond me. No matter what, that makes me think that we’re getting sicker from the food. Yuck!

Friend!

Great to see you. I see you had cavitations…can you give me a link to your posts about it? Or maybe inbox me? This is one of the only things that make we wary of coming off abx because I still have some in my mouth but my Biologic surgeon…kind of went crazy and didn’t finish the job. He’s like a genius. I’ve been hoping to fix it myself with your sulfurated protein concoction because they already told me I have osteonecrosis of the jaw. My guess, those women who get ON of the jaw on biophosphonates all had cavitations when they went on the med/suppressants.

I really think you’d like that Cooling Inflammation blog. This guy is a carbohydrate scientist (who knew?) and has a lot of information on meat, digestion, etc. Basically, his take is without the right microbiota, we can’t digest what we should be able to and if we replace the microbes, we can restore health. Kind of like those with dairy allergies…which aren’t allergies, they’re missing the right digestion microbes to utilize it and as we all know, you can ‘undo’ dairy allergies by using probiotics.

Oh, and get this, he doesn’t think probiotics work. Weird, and I keep trying to wrap my head around some of what he’s saying. I don’t agree with everything he says, but its a starting point.

Milo – you ok?

Pip

[A Friend]

@Linda L wrote:

A Friend,
Have you toped eating meat completely?
Linda L.

Linda L,

When I realized from reading/studying (and experiencing) what excess acidity in the body can do, I quit eating “red” meat and pork. But I still got lots of protein from fish, chicken, turkey, eggs, Budwig cottage cheese combo, etc. I also pay attention to get these protein foods from healthy organic sources. So much of our food supply of proteins are raised in unhealthy conditions and with lots of antibiotics, etc. And I believe eggs from free-range hens are good for us, if the yolks are not overcooked.

About my eating meat… For some time now, several times a month I prepare a small beef filet for my spouse and myself and enjoy it. With any meat meal, I try to remember to take a hydrochloric acid capsule mid-meal, to help break down and digest meat proteins from all sources. For a real education about hydrochloric acid do a search for it + rheumatic.org and a paper should be found.

Since I’ve been using one scoop of ImmunoPro nondenatured whey protein a day (this has been several years now), and have been doing the above meat + HCL thing, these things seem to be working well and my body seemed to be doing well on this regimen…. until the high dose D-3 5,000 thing upset the applecart for well over a year. I guess I could count the high dose D-3 thing a blessing, because from that experience (and all the hundreds of searches done), I was led to where to find the answer to the cause of my own longterm chronic illness.

Best to you!
AF

[A Friend]

Pip wrote:

Friend!
Great to see you. I see you had cavitations…can you give me a link to your posts about it?

Pip wrote:

AF replies: I don

[Pip]

My bad…maybe I mis-remember your Dr. Budwig stories. I thought you’d said you’d used it when they discovered bone lesions. Something about ‘mysteriously disappearing bone lesions’. Brain gone, sorry, but I’m blaming middle age. LOL My thought was, if it could undo THAT, it could undo ON which came from the encapsulated poorly removed wisdom teeth in my college years.

I did have surgery on one side of my jaw. The other side needs to be done HOWEVER the done side has a growing lump, exactly like I had BEFORE the surgery. My guess is he missed something, the same something the original DDS missed. When he was in there, he said he’d never seen such a bad case (hubby watched the surgery and said my jaw bone was crumbling’. DDS said I must have a high pain threshold as most people would be screaming in pain. I was like, are you kidding me???, I’m PRA, and we know pain.

Anyway, the DDS said it wasn’t cancer so…that’s why I’m hoping to try and fix this myself. The only other choice seems to be one of those bionic jaws and I’m just not willing to go there.

[Lynne G.SD]

Hi PIP,FRIEND
Since I found out that just plain old “getting older” causes a decrease in stomach enzymes I have always used them from the time I was 40 ,long before getting sick and I can tell you that I have always been able to digest rocks.
Now I have ovarian cysts,yes,that is normal with SD, and am on proteolytic enzymes and evening primrose oil.This combo should work well.Since I found out how great they were for my cat I figure it’s worth a try.Anything to avoid surgery as it’s well known that SDers do not heal well and a cut can stay open for months even when in remission.

[A Friend]

@Pip wrote:

My bad…maybe I mis-remember your Dr. Budwig stories. I thought you’d said you’d used it when they discovered bone lesions. Something about ‘mysteriously disappearing bone lesions’. Brain gone, sorry, but I’m blaming middle age. LOL My thought was, if it could undo THAT, it could undo ON which came from the encapsulated poorly removed wisdom teeth in my college years.

I did have surgery on one side of my jaw. The other side needs to be done HOWEVER the done side has a growing lump, exactly like I had BEFORE the surgery. My guess is he missed something, the same something the original DDS missed. When he was in there, he said he’d never seen such a bad case (hubby watched the surgery and said my jaw bone was crumbling’. DDS said I must have a high pain threshold as most people would be screaming in pain. I was like, are you kidding me???, I’m PRA, and we know pain.

Anyway, the DDS said it wasn’t cancer so…that’s why I’m hoping to try and fix this myself. The only other choice seems to be one of those bionic jaws and I’m just not willing to go there.

Pip,

My experience can possibly be helpful for you, too.

It’s a long story, but the part you are mentioning about my using what turned out to be Dr. Budwig’s “formula” happened this way: I knew nothing about her or her work. I had begun losing weight while eating a good healthy diet, and this was not too long after I was diagnosed with what the lab said was RA, had found Dr. Brown’s work in “Arthritis Breakthrough.” Even though I began doing better after starting AP, I began gradually losing weight… 115 down to 92, and looking emaciated. Again, I’d never heard of the Budwig Protocol, but I’d read that Essential Fatty Acids were needed, so I began putting Flora brand Flaxseed oil in my whole milk quality yogurt from the health store each day — twice a day as a snack. In a few months, the wasting slowed, stabilized, and then I began gradually gaining back the lost weight. At the end of a whole year, I was beginning to look like the picture of health, and kept looking and feeling better all the time.

I had just become a group leader for several rheumatic illness groups that merged together — and spending lots of time at the computer. At a doctor’s apt, he asked how I was doing. I mentioned good except for neck, was sent for x-rays — and that’s when all the terrible looking films began being found. I was told to find an oncologist. Four months of every kind of imaginable test (all looked bad), but again, no source of cancer was found. The oncologist said we’d take a break during Nov and Dec, and in January re-do the original test to see if it looked better or worse. The same week I decided I wanted to find and read about the EFA’s (Essential Fatty Acids… which are in flaxseed oil)… playing detective. That was when I first read about Dr. Budwig’s Cancer work. She was a renouned cancer scientist, and I found and read in an article on: http://www.arthritistrust.org and the title of the article is Essential Fatty Acids Are Essential. It was an ahaa moment to read about her treating cancer patients.

A sales lady at my health store told me about a tape she had just been given by a customer who had written for a copy of the tape. It had been made by Cliff B, long deceased now, and a tireless leader of the Yahoo support group for Dr. Budwig’s flaxseed oil work into advanced age. Cliff had given his telephone number on the tape, and I was excited to talk with him that day about Dr. Budwig, and to ask questions, and share the profound news I had been learning. My oncologist called me her “mystery patient.”

You better believe I have continued daily “Budwig Formula” for breakfast most mornings. It’s wonderful not only for what it has done for me, but I’ve found it delicious, and add various fruits to it.

Hope this information will help you, Pip, and many others who may read it.

AF

[Anonymous]

Thank you pip, milo

[PhilC]

@Pip wrote:

And at risk of offending the celiac/gluten-free peeps, it didn’t make sense to me that taking gluten out would be good long term. It’s a quick fix, usually a couple of weeks, but for long term healing, it wasn’t something I was willing to do. To me, a functioning gut means it can handle what is put in there. The question became, how to make it functioning and how to repair the gut.

Everyone is different, so there is really no “one-size-fits-all” kind of diet. There’s really no reason for people who are not sensitive to gluten to avoid it. Gluten doesn’t bother me one bit, but many other things do. For example, my body “hates” all dairy products, even goat milk. At one time I thought I might be slightly sensitive to gluten because my pain seemed to get a little worse after eating a sandwich made with whole wheat bread. However, a lot of bread contains milk or other dairy products (e.g., whey). After I switched to eating only dairy-free bread, the problem disappeared.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lynnie_sydney]

Pip wrote
And at risk of offending the celiac/gluten-free peeps, it didn’t make sense to me that taking gluten out would be good long term. It’s a quick fix, usually a couple of weeks, but for long term healing, it wasn’t something I was willing to do. To me, a functioning gut means it can handle what is put in there. The question became, how to make it functioning and how to repair the gut.

[/quote]

Cutting out gluten (and really cutting it out – including all the hidden gluten in many products) takes far longer than 2 weeks. Because of its half life, it would not be out of anyone’s system for 3 to 4 months – and sometimes longer depending on individual lifestyle.

http://trulyglutenfree.co.uk/2011/03/09/how-long-to-get-gluten-out-of-the-body/

It has been the single biggest contributor to my staying completely free of the once agonising palindromic episodes and, overall, staying pretty well, in spite of the fact that my body has become too sensitised to mino and I can no longer take it.
Starr also attributes eliminating gluten to being the last piece of her ‘no more inflammation’ puzzle, even though she had an extremely healthy diet prior to that – vegetarian and fresh only. See her recent 10 year update

viewtopic.php?f=1&t=10106&p=72835#p72835

In my experience almost everyone I know with a rheumatic or other ‘auto-immune’ disease has a sensitivity to gluten (you don’t have to be celiac). My weight gain, bloating after certain meals, craving for cookies, etc all disappeared after I eliminated gluten from my diet. If you read up on it, you’ll find that gluten is added to almost everything these days as a cheap binding agent and that grains have also changed (been changed) over the years and contain far bigger amounts of it. All adding up to an avalanche of gluten that people did not once consume.

Also, many breads contain other key preservatives (esp. in U.S. and UK) that people can be intolerant of. It’s never a one-size-fits-all situation or (in many cases) a simple answer.
http://fedup.com.au/news/blog/gluten-free-is-not-a-fad

Some of the gluten-free alternatives in the supermarket aisles are shocking – loaded with sugar and other nasties. So it most certainly IS about cleaning up the diet not just cutting out one or two things and thinking that action alone will contribute to healing.

But I do stand by the fact that cutting out gluten has made the single biggest difference to my overall wellbeing in the last 6 years.

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)

[Pip]

Son of a gun! Lost the entire post.

Phil and Lynnie –

This is what happens when you are rushing to get back to work. What you post makes no sense. Sigh. Today will probably be worse because of the time wasted with the lost post.

Phil –

Also, some research shows that people may not be allergic to the gluten, but instead to the mold of the grains stored for gazillions of years. I wasn’t suggesting people not do GF, just that, for me, I decided to try and find a way for my body to overcome that issue.

Lynnie –

Great to see you!

Ssshh! I was saying 2 weeks to give people a reason to TRY GF. Most people report an improvement in that time.

Why have you become sensitive to Mino? Any ideas? I haven’t heard of that before, I don’t think. Are you using another abx?

Paraphrasing you – My weight gain, bloating after certain meals, craving for cookies, etc all disappeared after I added in healthy fats AND increased my veggies per Dr. Wahl and her Ted Talk.

And yes, I react to preservatives in store bought bread. So, for us, we just make it at home and I have one slice a day. Definitely lo-gluten here. But not ALL of it is out of diet. That was my point, that I miserably failed at explaining.

When I was first diagnosed, and refused to give up my bagel (now gone a few years – phew!) I noticed a couple of things.

1) Most people seemed to move their IgG or IgA allergies to a IgE version and to me, that said they were getting worse. Your mileage may vary.

2) Subsequent research I’ve seen over the years tells of GF people whose diet fails after a time, very similar to the Garth Nicholson protocol and the necessity of rotating antibiotics. But because of # 1, what could they do?

So, FOR ME, I wanted to find a way for my body to tolerate gluten, in small amounts, like homeopathy or whatnot, and try to reset the gut. That’s where I am THIS YEAR. Who knows where I’ll be next?

Pip

[Pip]

PS – Milo – still OK?

[Anonymous]

Hey All,
I had my appointment with my new Dr yesterday, she has put me on daily low dose naltrexone (will put the dosage later when my brain is working) she said to start off one tablet a day for a few days then to 2 tablets if all goes well, she has removed the Biaxsig and amoxil antibiotics and kept me on just doxycillin 1x50mg in the PM daily for a week then increase to 2x50mg AM & PM daily, to continue with the nexium and fungilin. She has ordered tests for lymes and co-infections (I have had some nasty tick bites over the last 5 years, after the symptoms of arthritis began) as well as blood tests(I am sorry about the lack of detail I have been in depressing brain fog for the last 2 weeks) She encouraged the use of butyrate and thinks my gut is a bit of a mess, I continue with probiotics and start pre-biotics.
She said she wants to increase the doxycillin and see what happens before introducing any more anti biotics and to also wait until tests come back from the US.
All in all I’m relieved that she didn’t balk at the complexity, didn’t throw hundreds of supplements at me and didn’t throw her hands up in exasperation as my last Integrative Dr did.
I felt heard and think that she is interested, she is currently treating herself for RA with AP so I feel comforted by that.

I feel heartened, my only struggle is trying to get my brain to work so I can take some resonsibility for knowing my treatments and what tests results mean and staying connected to my body so I know what is happening, I have been in so much pain that all I really have identified is more pain or less pain not always why I have less or more.
I’m on a fairly limited diet, but I don’t where the heck along the way I got so sensitive to everything, I thought I was tougher and more resilient.
I’m still anaemic but I’m hoping that will improve, one step at at time, new Dr renewed hope. milo

[Author]

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