Questioning my decisions… What to do now?

[kater]

I second what Lynne said about the gluten. My naturopath told me that it takes 3 weeks to even remove the offending gluten molecules from the system and only after that can healing begin–and it is a very long and slow process to heal the gut. Like you, I can eat anything and not see an immediate effect. Thing is for many people the damage is slow and cumulative, likewise the repair! There is so much good info on this site about leaky gut syndrome. I don`t agree with Lynne on the cardboard thing though.Grain free is hard, but cutting out gluten not so bad when you get the hang of it. Tons of great products available. I should post my favourite gluten free flour mix–will put it in a separate thread. I try to see a “good for me `diet as a way of loving myself rather than deprivation and for me that reframe works wonders! 😀
Good luck
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[lynnie_sydney]

I third that, Tom! 😀 😀 😀 Gluten-free has become a total way of life for me. It’s been 41/2 years now. And I dont have any problems at all with being so. It is probably the one thing that is most noticeable if I ingest any at all……..get a bloated gut within hours. And I just spent 11 days in southern france. If I can manage France (with all their breads and cakes and everything made with sauces and butter) managing to stay both gluten and dairy-free and by no means depriving myself, where you are should be a cinch!

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)

[Valsmum]

Hi Tom,
Sorry to hear you are feeling down and you are in pain. I like the advice of Dr. Furman-who treats RA with diet, to eat 90% good food and 10% other food-goodies. He may not suggest this at the first part of his diet. Sometimes eating fruits, veggies and fish/chicken only get me out of a flare , minus nightshades and corn. Some people I know, do well with an apple fast, they just eat apples for a few days and it reduces their pain. These are some ideas that might reduce your pain. I’ll pray for you and your family. I know what you mean when you look normal but are feeling awful, that is so hard. Hope you have a good week, things will look up.
Take care,
Sheri

[crowchez]

Tom,

I don’t want to beat you over the head with more go-gluten-free advice but it doesn’t have to taste like cardboard (too many starches 😆 ). If you search for primal/paleo recipes you’ll get a ton of hits. Here are a couple
http://nomnompaleo.com/recipeindex/ Nom Nom Paleo
http://www.health-bent.com/ Paleo recipes that don’t look or taste like dog food.
I’ve been gluten-free for 2 1/2 years & have recently gone grain-free (again). I find it’s easiest for me to be draconian with my diet the sicker I feel. The food on these methods of eating is outstanding. It does involve cooking & planning but boy is it worth it. Of course, diet is only one part of the plan to get well, but we do have absolute control over it. I hear you on the candy though, since chocolate is my weakness but heh, no one’s perfect. 😎 I hope you find some things to make you feel better soon.

Lynnie, I’d love to hear what you ate in France. Although I no longer miss eating bread, I think walking past a bakery would do me in.

Deirdre

[PhilC]

Hi Tom,
@tbird2340 wrote:

Then I started to see an LLMD and he tested me for gluten sensitivity (stool test).. It came back like slightly over the max level.. The people who do the test say if you are 21 and the max is 20 it’s basically as bad as testing 500.. So, he told me to go gluten free.

There are some other dietary changes you could also try. You could eliminate dairy products and nightshade vegetables, something I highly recommend doing. For more details, read this message that I posted back in December:

viewtopic.php?p=58076#p58076

Phil

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

[Trudi]

Hi Tom–
I’ve been watching this thread and just want to chime in–not with advice–but compassion/empathy to let you know that I am so sorry to hear of your present difficulties. You’ve been added to my long list of people to pray for. I hope you will find complete relief soon!!
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Krys]

Hi Tom,
Sorry for taking so long to reply. I made some big dietary mistakes (lots of bread, among other things) and I’m flaring myself, also with accompanying big confusion and mental fog.
I feel like a fraud offering advice on diet when I cannot keep it myself.

Some answers:
1. Correction: we do not have the same LLMD. I read Dr. P. instead of Dr S.
2.

What I meant by that is that I’m currently doing what I feel is the alternative route for my RA.. IE: ABX instead of the normal MTX etc..

I thought you meant alternative route for Lyme Disease, i.e. non-abx treatment. Your reply of alternative route for RA got me confused for a while again: I thought that you are treated for RA, not Lyme.

@tbird2340 wrote:

@Krys wrote:

I pull myself out by doing very strict diet of chicken broth, chicken + veggies cooked and some raw. During that time no nightshades, no root vegetables (too much starch), no carbohydrates (not even rice, buckwheat, quinoa, etc.), no sugar, no milk, no yogurt, no eggs, no bananas (I am allergic to them), no nuts (when I flare due to big dietary indiscretion even nuts deepen the flare), limited fruit (no dried fruit).

How long do you do this!? What do you eat for snacks??

I usually keep the diet that strict for 4-14 days until I feel normal or great. The snacks during this time are the same as diet: chicken! 😆 , big cucumbers (I never flare on them and I get lots of live enzymes!), 1 apple (I may flare for a very short time on 2 apples unless I eat them baby style: grated, to which I add cinnamon + cardamom + ginger), chicken, green juice, chicken broth, chicken, lettuce+cucumber+onion+garlic+ celery + possibly mustard greens sprinkled with lemon juice and olive oil. In summertime also ripe organic fruit, no oranges and grapefruit during the flare. Tea, nothing added. ….

If I keep strict diet for a long time, I feel great!
But I’m not capable of sticking to it. Just too many limitations. If I wanted to avoid everything that causes even a minor flare, I would have to avoid all grains, all major vegetable and fruit starches (unripe fruit contains starch), eggs, milk, cheese, all nuts except soaked and peeled walnuts (the peel in nuts contains starch), all sugar (honey OK), any corn derivative, …..red meat, any deli lunch meat,….anything eaten more often that 2 days in a row.
I would have to eat everything ripe and organic (inorganic fruit is often sprayed with artificial dyes to which I am highly allergic. Store bought fruit and veggies are usually not ripe, hence contain a lot of starch!!!). Once I start flaring I can flare on organic broccoli if I eat it more than 2 days in a row.
So while flaring, the diet is very strict.

When I stop flaring, I allow myself foods that cause a very mild reaction during the flare (only because my list is very extensive). To avoid a reaction, I rotate them by not eating them more than 1x in a week.
Wheat and then all other gluten grains and milk are the worst offenders for me. Non gluten grains if eaten in a small amount only 1 x a week, do not cause any flare or just a minor, very short lasting reaction if the amount is bigger than “very small”.
My rotation of non gluten grains looks like below:
I eat mostly chicken and vegetables and once in a few days time allow myself small amount of buckwheat, next day just chicken and veggies, 1 or 2 days later small amount of rice, chicken and veggies, next day maybe red meat + veggies, then chicken + quinoa, again just chicken and veggies, then millet + fish +…..
I’m fine on spaghetti squash 1x a week. Pasta sauce that does not contain any sugar or starches is OK 1x a week. Cauliflower pretending to be mashed potatoes is OK. Occasional carrots in small amounts cooked or raw are OK, unless during a flare, then they cause a very big flare. Pasta made out of zucchini – OK. I don’t flare on ripe tomatoes but do on all other nightshades.

BOOKS ON DIET
Unfortunately I have not found any single book on diet that would include all my food intolerances.
But there are plenty of fabulous books that will help you understand what to do, why, and how.
My favorites:
1. Prof. Keith Scott Mumby “Diet Wise”. “Toxic Foods are Common and Cause a Lot of Harm. Everyone is different. Find Out Yours.” Easy and entertaining reading and a very strong case for finding out hidden (masked) food allergies. Interestingly, Keith Scott Mumby does not allow chicken during the 2 weeks elimination diet, saying that those who are allergic to eggs often do not tolerate chicken as well. You test for allergies after 2 weeks of abstaining from all possible food triggers (the reason for a very strict diet for 2 weeks) by eating only 1 single “new” food before noon. Combing the newly reintroduced food with other foods may dissipate the reaction and you may end up later still flaring on it. If there is no reaction, you repeat it at dinner (this time you can combine it with foods eaten during elimination diet) and again next morning. If there are no reactions after you consume it 3 times, it means it’s safe. You measure the reaction not just by symptoms but also by checking you resting pulse (2 minutes of sitting before the measurement) before eating the food and then 20 min., 40 min. and 1 hour later. If the pulse raises by 10 or more, you are allergic.
2. Carol Sinclair’s “The IBS Low-Starch Diet”
Hopefully gluten free diet will be enough for you to be symptoms free. Still this book is invaluable. It teaches you how to detect offensive ingredients when you think you are following the diet and are still flaring. Lots of info. And lots of great recipes.
3. Specific Carbohydrate Diet in Elaine Gottschall’s “Breaking the Vicious Cycle. Intestinal Health through Diet” Even though it is “Diet for Crohn’s Disease, Ulcerative Colitis, Diverticulitis, Celiac Disease, Cystic Fibrosis and Chronic Diarrhea” it is greatly helpful for all chronic conditions because it explains in a simple yet thorough and down to earth manner what is happening in our digestive tract and how it further affects brain and all body systems, including joints and connective tissue. It is more anti-inflammatory than just gluten free diet.

If you Google Specific Carbohydrate Diet (or SCD bread) there are tons of recipes! Nut flour is used instead of grains, mostly coconut and almond flour.
4. Dr. Natasha Cambell-McBride “Gut and Psychology Syndrome”
and also by the same author “Internal Bliss. GAPS Cookbook”
Originally written for children with autism, it is SCD taken a step further to heal the damaged gut lining before it can tolerate full SCD. The research and the results of application are astounding!
For me the diet is difficult to fully incorporate while on abx and huge amounts of supps. I incorporate as much as I can and plan to use this diet exclusively once I do not need abx in such big amounts.
If you wonder what to eat, “Internal Bliss. GAPS Cookbook” offers most wonderful delicious recipes of meals that will actually be healing your gut, not only preventing a flare!

SNACKS
After 2 weeks (many docs insist on 6 weeks) of elimination diet, and when you find out you can eat nuts, it is a great snack!
–It’s advised to buy shelled nuts and if there are any starch sensitivities or weakened digestive system (as we often do have) to blanch nuts and soak them in water for a few hours and “skin” them. The process makes a big difference.
–Apple slices topped with nut butter (no peanuts: they are often rancid and contain mold) + optional honey. You may sprinkle the slices with cinnamon. The brain remembers an apple pie and is fully satisfied. Best if make your own nut butter, but most people tolerate store bought one.
–Vegetable and fruit snacks work great, too.
–There are cakes, cookies and pies one can make within SCD diet (not allowed on introductory GAPS) and on gluten free diet.
Sometimes I follow GAPS/SCD and use coconut + almond flour, sometimes when I’m rotating non-gluten grains I use ready made gluten free bread mixes and use them to bake cakes or make pancakes. If I eat cake or pancake I do not eat any other grain a day prior or after. Gluten free bread mix by Namaste Foods (Vitacost) works well for me as it does not contain corn flour. It still contains Xanthan gum which is made of corn, but I have not found anything totally corn-free, potato free, soy free, casein free, etc….I tried making my own mix many times and the result was inferior.

Sorry for a very long post! Warm wishes, Krys

[Krys]

@Ruffian wrote:

I do have one question Krys, not to hi-jack Tom’s thread…but if Candida was an issue with Tom (and I suspect me too) what things would you ultimately try?

Also Tom, something that has helped me tremendously is alkalizing my body. I mean it seems weird or hokey, right? But it’s HUGE. My inflammation goes down so much when I concentrate on it. I get the 9.5 alkaline water from the health food store.

Thank you for your kind words, Ruffian.
Candida is very hard to get rid of, especially if one is on abx. I have not conquered mine completely, though at times I thought I had. Each time I have an especially hard time following the diet, if I take Diflucan for even just a few days, the bread and gluten cravings disappear.

With systemic Candida even naturopathic doctors say that a course of Diflucan or other antifungal antibiotics may be the best course to take. Sometimes they have to be taken for a few months.
If you are not currently on abx you may try herbals. They can be taken while on abx, too, but then you should check for interactions. For example while on Azithromycin (a macrolide abx), combining it with Goldenseal (an herbal macrolide abx) may not be a good idea as both shut off P450 cytochrome in the liver, a major detoxification pathway. I did not know about it and was taking both at the same time and experienced no problems. But when I combined ZIth (Zithromax or Azithromycin) with Diflucan, both of which shut off P450, my liver and pancreas swelled up and it took me a couple of months to get back to normal. I’m experiencing the very same problem again.

viewtopic.php?f=1&t=6092&p=54141
I listed there all herbs for Candida mentioned in “Herbal Remedies” by Asa Hershoff.
The herbs marked with 3 stars are most potent for the condition.

My nephew had systemic Candida for 4 years. His GP prescribed 1 course of Nystatin liquid which did not help. Obviously his doc did not take it seriously. My nephew postponed changing doctors and doing further testing. He started taking Pau D’Arco 3x 2 caps + Cat’s Claw 3x 3 capsules a day + 1-2 cloves of garlic + probiotics (Saccharromyces boulardi being especially useful) there was some major improvement over 4 months, but the problem did not disappear. He had some nasty herxing in the beginning, then some major toxin built up (exhaustion, muscle weakness and pain, etc) but he kept refusing to do detox or changing his diet. He did limit the sugar to 1tsp in his tea and did a few days detox eventually. Then he added Colloidal Silver spray (I suggested ACS 200 because my LLMD carries this particular brand, so I thought it should be very good) and it cleared the problem within a few days! He is still taking the herbs, changed Pau D’Arco to Olive leaf extract, just to make sure that any residue is gone, too. As Cat’s Claw for Lyme is taken for 9-12 months, my guess was it could be good if he continued this particular herb + some other herbs from the list for this amount of time, too. He has epilepsy which from my reading may be due to Candida, but the cause was not established by any of his docs. Cat’s Claw is quite a phenomenal herb that treats a whole range of conditions, including spirochetes, fungus and epilepsy. It has to be taken with a small amount of ACV or lemon juice (added to water) to increase absorption, otherwise the active ingredients may not be utilized by the body.

You may find a lot of suggestions when you search the RBF forum and use Google search.
I remember Oil of Oregano, iodine and coconut oil as being anti-Candida, too. ImmunoPro (non-denatured whey protein) has got some anti-Candida effects, too.
Another very helpful adjunct is Triphala. It would be milder but has got phenomenal properties of aiding digestion, assimilation and elimination. I buy mine by a pound and the cheapest one I found was in http://www.mountainroseherbs.com/bulkherb/t.php#h_t_tr_p Many people prefer it encapsulated but I personally like the taste and used to like it best added to my coffee! 😀 htpp://www.mountainroseherbs.com/learn/triphala.html gives description of the 3 gooseberries.

Ayurvedic take on Candida: http://www.yogabhoga.co.uk/yoga-articles/candida-an-ayurvedic-perspective/

A Friend in a thread on coffee enema mentions that coffee enemas are very helpful to get rid of Candida metabolites and hence diminish herx reactions. They are great for any major herx reaction and increase the production of Glutathione by astounding 600%!!! From my own experience, contrary to what I quoted as the best way to take it, doing it before the bed time is NOT a good idea at all! I tried it and there was no sleeping all night long and needless to say I felt quite horrible the next day.

If you Google natural Candida treatments you may find better sites than the one below. I’m offering it here because of Colloidal Silver, comprehensive list of pharmaceutical antifungals and dietary recommendations. Just to make it easier for people, diet on its own will not clear Candida, even with many years of diet! Once off the diet, the Candida will be back!
http://www.ei-resource.org/treatment-options/treatment-information/antifungal-treatment/

Hope some of the above will be helpful.
warm wishes, Krys

[Krys]

Hi Ruffian,

I hope you have noticed the new thread by A Friend, “A Gold Mine of Articles and Information”.
The link AF supplied to the Arthritis Trust has the best article I have ever seen on Candida (+ a lots of others).
http://www.arthritistrust.org/menu_list/articlesimportant.html

Had I remembered about about Arthritis Trust or had noticed A Friend’s thread earlier, the present post would be the only thing needed!
Krys

[kali]

With all the talk about candida overgrowth:

https://www.wholeapproach.com/cgi-bin/commerce.cgi?preadd=action&key=111

http://www.wholeapproach.com/candida/comparison.php

[Anonymous]

Hey Ruffian,

I know yeast can be such a major factor with the state of our immune systems when going through all of this. However, keep an open mind because although candida might be the culprit – mycoplasma or other nasty bacteria can also cause the same symptoms. I had lots of itching in my ears too. It has finally cleared up. At one point it had cleared up – but eating any sugary foods would bring it right back. Now – even that has dissipated. Another thing to contemplate….Until we get our immune systems up to par and get this bacterial load down – yeast will just continue to proliferate because we have no defense against it. I don’t think I would be inclined to stop the abx because it would be a risky trade-off. I think most AP docs try to treat both simultaneously.

Love ya Ruffe,
Kali

[kali]

Ruffian! Hi!

I know what you mean about the itchy ears. Mine have been affected also…but have recently gotten much better. I am not sure it is solely candida. Even if it is…the fact that you still have something else going on that is ‘stifling’ your immune system is keeping you from fully addressing the candida issue completely. I think for that reason, most AP docs like to treat the candida and ‘other bugs’ simultaneously. You need to fight them both to get your body back to health. My ears have cleared up alot. Although I’ve been on a strict diet, I haven’t treated specifically for candida other than using Pau d’ arco tea. So for me, I think it must be another bugger in my ears. Also, they used to flare when I would eat just a small amount of sugar. They don’t anymore! That’s a revelation I made just this weekend after eating some ice cream…. one of my few cheats…once in a blue moon.

Also, I know you have alot of good supps – but I think it is best to use only one specific anti-fungal at a time. I think it can be ok to rotate them every few m0nths or so – but just stick to one at a time.

Hope you feel like a million soon!
hugs,
Kali

[kali]

Oh yea…one more thing…Some of those natural supplements are pretty all-purpose anti-microbials and might heighten a herx reaction. I know oil of oregano is very strong and will kill lots of bugs not just fungus!

[tbird2340]

I want to start doing coffee enema(s) but dunno what I need to get.. I know I need some certified organic coffee.. But what about the enema part? Are they like one use things or what?

If you know what I should get (on Amazon, eBay, etc) I’d greatly appreciate it..

Thanks!!

[lynnie_sydney]

Tom – take a look at this site
http://www.healingnaturallybybee.com/articles/enema1.php

and this thread

viewtopic.php?f=1&t=6655&hilit=coffee+enemas

Hope these are helpful.

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)

[Author]

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