this bulletin board is no longer user friendly

[lynnie_sydney]

Lynne – I know what you mean. I am now on a very strict dietary regime. No gluten, wheat, rye, sulphur (which I've been told is a REAL baddie), no dairy, plus no salicylates (which are in almost everything, I've learned!). Interestingly, I dont  mind it (except the part where I am the dinner guest from hell!!!). I cant eat pork, but have been advised to eat red meat at least 3 times a week. However, that is specific to me. I've also discovered that there is wheat/gluten in things you would just not expect (instant coffee for example, it's used in the processing). Sounds like you have been thoroughly tested for sensitivities. My new naturopath (who works with the new AP doc) uses a VEGA machine. What method did you have to measure it? Have you tried also cutting out all perfumed, coloured skin, hair and cleaning products? They're packed with salicylates. Don't give up. There'll be a key somewhere for you. I'm reposting a link to a great website by the woman who runs the allergy clinic at one of our top teaching hospitals. It contains a wealth of information. Sounds like you need some additional support right now. I do hope you find it. BTW, I was in Thailand last year and went to an orchid farm. They are so beautiful. Lynnie

http://www.fedupwithfoodadditives.info/

http://www.fedupwithfoodadditives.info/factsheets/Factsalicylates.htm 

 

 

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)

[mikat828]

Lynne

Have  you tried the specific carbohydrate diet?  It supposedly helps with all these issues.  I am trying it right now–been on it 2 days so too soon to tell!

Kathy

[Lynne G.SD]

Hi Cathy;
        There are so many things that have carbs but again there are so many that I can't eat.Tell me a bit more about this.   Lyne

[mikat828]

Hi Lynne

The diet is for people with yeast issues, irritable bowel, chrons and ulcerative colitis to name a few.  it cuts out anything that the body might have trouble digesting fully.  So it is more restrictive then the gluten free diet because it excludes potatoes and other starches.  I have read some good things about it.  I have been on it for a week.  So far I feel like I am having a die off reaction.  Probably because you can't eat sugar or items that lay around and break down into sugar so it is killing pathogens.  I will know more about how it works for me in a few weeks.

Kathy

[klogan]

I have done many many things in the last six years, but ap was probably the biggest piece of the puzzle. I reacted very strongly to any type of detox as well as to ap. Because of this, I never worked up past 25mg of doxy (and at time mino) three times a week. But this worked for me. As well as clindamycin occasionally. I did get the Clindy IV's in Iowa at the start of my treatment. I was diagnosed with both mycoplasma fermantans and hominus.

This is helpful information to me – I too seem to be very sensitive to both abx and detox. I impulsively ramped up to 100mg mino and 100mg doxy daily for a while and ended up with medication induced lupus. Now I am taking 50 mg MWF of doxy, but always think I should try MORE. It's the devilish more is better illusion. Think I'll trust my instinct and go slow. Maybe it will work!!
I am feeling a bit despairing because in the past year I have gotten much worse, with involvement of lots of new joints, hearing loss, vertigo, fatigue, etc.

[lynnie_sydney]

Klogan – my AP Doc says that vertigo, sleeplessness and fatigue are symptoms of the hypoglaecemia that is due to leaky gut (which she says all people with a longstanding chronic illness have). Have you made any dietary changes? 

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)

[shela sd]

I agree completely.  The previous organization of postings allowed you to browse through all the most recent posts easily and return to topics, too.  Please reconsider.  This format feels way more removed from an ongoing discussion–you don't feel as close to the rest of the community–a sense of immediacy or presence.

respectfully,

shela

[shela sd]

Wait a minute–I just responded to “no longer user friendly” and the posting are about diet–

perfect example of what I'm talking about  —-

my posting is lost and will have no effect….

 

[Serenity]

I actually think the current format looks a lot more professional, and the PM feature is very helpful.  It adds legitimacy to AP to have a professional looking webite and community forum.  The other board looked dated and the spam was dreadful. 

However, the concern of topics changing mid-thread is a legitimate one.  Perhaps the Mods can more strictly enforce sticking to topic so conversations don't veer off-topic.  For instance, the diet discussion here is interesting, but a lot of people wouldn't know it exists based on the thread title.

🙂

[steph-sclero]

Also, I think for a lot of people the abbreviations should be kept to a minimum. Not everybody follows often enough etc. to know what the heck the scramble of letters means. May be we could have a legend of terms somewhere so typing for those who find it hard (pain, dexterity etc.) could still continue to abbreviate.

[klogan]

Interesting! I just overhauled my diet and lost 25 lbs. I am avoiding dairy, sugar, wheat, nightshades, processed foods, and cutting back meat and alchohol. The vertigo started after that.
I don't feel hypoglycemic, never get those crazy blood sugar drops.
I was optimistically hoping not to develop leaky gut, but I do use Celebrex every day and I took a lot of Aleve in the past.

Have to read up on leaky gut…

Thanks!

[Author]

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