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hey Phil,
I eat out once every 4 or 5 months, i really cant trust what others cook it makes me very nervousJust to clarify a point here. The amounts of antibiotic prescribed by this Doctor are not the big doses prescribed by LLMD’s. They are generally very small amounts of a combination regime. I know this Doctor well and also know a fair few of her patients who have generally done well – and who started on combinations of this type.
The main issue here is that milo is not doing well. However, her diagnosis is not completely clear – symptoms of PsA and possibly AS. She has also only been on this regime for 4 months which is a very short amount of time, particularly as she has a 9 year history of symptoms and of other pretty heavy medications. Remember, Brown said that 3 years was not unusual for major improvements when disease is either severe and/or longstanding. Another issue for milo is that she is having problems managing this regime or looking to tweak it, with she and the doctor being in another State.
milo, see how you fare with Dr D in Sydney. IMO, she is more likely to want to look at some other options for you. Hang in there!
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)Thank you lynnie for your support, this is a difficult path to navigate through and I think it’s important for me to stay with the path I have been put on so far until I see Dr D and I DO need to remember that I have only been on AP for 4 months so quite a ways to go yet.
Lynnie, your signature says that you are dairy free, are you off all animal milks? Do you use seed milks, such as hemp milk? When you say sulfites does that also include sulphur veggies like cauliflower, zuchinni, broccolli? Milo.
Hi Milo,
@milo wrote:hey Phil,
I eat out once every 4 or 5 months, i really cant trust what others cook it makes me very nervousThat’s good.
This is reason I asked you that question:
@milo wrote:I took out yet another loan and flew to the states to do a 35 day water only fast, I get such relief when I dont eat, not complete relief this time but 80%, the only problem is that at some time I have to eat, unfortunately my potassium levels dropped whilst fasting and have caused an irregular heart beat (have yet to get that checked out) I started eating and the pain came back.
What you wrote there leads me to suspect that you were not careful enough when adding foods back to your diet. They need to be added back one at a time, and with enough time in between them to allow you to figure out which ones are causing trouble.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einsteinyes, that was some time ago now, and I have been careful with my food and have been allergy tested, thanks for your feedback.
miloMilo you have written that you get relief when you don’t eat. I have noticed that when I don’t eat and drink for let’s say three hours my joints start to be very, very painful. I have to find something to eat and drink quickly and in 5 minutes the pain is gone /it is still there, but not that severe like before I had food/ I have noticed it many times. I don’t understand why it happens.
Linda L.Hi LindaL,
Isnt that just amazing how different we can be; Do you have to be careful of what you eat, or can you have pretty much what you like?Hey LindaL,
Isnt that amazing how different we can be. Do you have to be careful of what you eat LindaL or can you pretty much have what you want?
I notice that when I eat ‘less than better choices and cause myself pain it is usually when I’m depressed or in pain and I use food to emotionally medicate.
It is an absolutely useless exercise to ’emotionally eat’ and I do it rarely, but when I do, I have to remind myself to have compassion as I’m doing the very best that I can.I’m glad to hear that you have a solution for temporary limited pain relief. milo.
Milo,
Yes, I must be careful what I eat. I am on a diet – no sugar, gluten and dairy free since January.I think it has helped me, but I worry that I lose too much weight. I think that I eat now less than I should. It is difficult with the people around eating everything.
Linda L.Linda – I lost a lot of weight when I first went gluten free. Probably for the first year. Over time (and adding in more carbs that were okay) I replaced some of that weight and have stayed stable since then at a pretty healthy/ideal weight for my size. I think, when first starting on a strict diet, we can be a little too afraid to eat. My diet (see signature below) is so much of a way of life after 6 years that I don’t even really ‘think’ about it any more. And with so many good gluten-free and dairy-free good tasting breads available in major cities in Australia, I eat plenty. Think the most challenging for me at first was how to replace a sandwich lunch! Dr K in Texas believes that, if we lose weight when first going gluten-free, we really do need to be gluten-free. Just make sure you are getting what you need from your diet.
p.s. after the Catalyst 2-part program (posted links to both parts in other threads) I am certainly going to add even more fibre to my diet! 😀 😀
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)Thank you Lynnie. Yes, it is truth, I am often afraid to eat more. Most often I eat an egg or salmon with bread in the morning, then roasted beef or salmon, avocado with bread and then dinner fish or chicken. You are encouraging me to try to eat more.
Linda L.I was also advised (Dr D in Victoria) to eat every 4 to 6 hours and to make sure protein included – to keep blood sugar/blood pressure levels steady. Since then, I have not suffered from the occasional vertigo I used to get. My blood pressure has always been on the low side or normal and needs not to get too low. You could try eating every 4 hours and see if that helps with weight stabilising.
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)Hey Milo –
When I started AP, I GOT depressed. Worse abyss in the world and then, for me, at around 7 1/2 weeks, it just lifted. Others have told you they got depressed around the 4 month mark. This is normal and the RB will help you through it.
Also noticed that so many people here have differing opinions on diet, so I thought I’d throw mine in too.
When I was first diagnosed, I noticed at least 40% of vegetarians and vegans were on BB’s for RA etc. I couldn’t understand that, as I thought ‘aren’t they healthier?’ Now I’m sure that they are not.
I’m now between this…
https://www.youtube.com/watch?v=KLjgBLwH3Wc
and this…
http://coolinginflammation.blogspot.com/ (warning: he HATES Dr. Oz).
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.
Again, everybody finds their own tweaks, but from what you described, you’ve lost a lot of your good gut microbes over the last decade. You have to figure out what is missing, and add it back in. Dr. Ayers (Cooling Inflammation) says to get good microbes to take over, you need soil based probiotics. Basically, eat dirt. Which, yes, I’m doing because now we have a garden for organic foods and no, I don’t scrub it down before I eat it. Sigh.
Sorry, I digress…
Hang on, the depression will lift, and look at the diet angle, please, because you’ve removed so many things, I can’t see how your gut can support itself on such a limited microbiota.
JMHO,
Hugs,
Pip
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