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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme diet suggestions, stories

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Author Topic: Lyme diet suggestions, stories
Skinny Luigi
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Hello, I was just wondering what diet changes everyone's made.

Is there anyone that is actually able to consume sugar and/or caffeine and get away with it, or does pretty much every single person here avoid both like the plague? What about alcohol?
I've heard avoiding gluten has made people feel better. Any success stories with that one?

My joints are continuing to get worse and worse, and I'm really scared for the future. Anything that could specifically improve my joint situation would be great, so once again I'm looking at diet.

I try to follow Dr. B's guide as best I can, but I find myself cheating a lot.. Is there anyone in a similar situation that cut out a bunch of things from their diet and felt a really big difference?

Thanks!

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MariaA
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alcohol is a definite no-no, it seems to cause a lot of problems for many patients, and we generally do things that stress the liver anyway, so alcohol would be a bad thing to keep using.

I saw a LOT of improvements when I cut out sugar completely and starches a great deal. Before I was diagnosed I noticed that I always felt worse- tired and brainfogged- whenever I ate a lot of bread- if I had a loaf of my favorite bread and ate a lot of toast for a few days, I'd start feeling worse. I assumed at the time that it was candida, but it might have been gluten, or might be just because sugar/(and simple starch?) depresses the immune system a bit and my Lyme would come out and have a party as a result.

I do a recipe forum at http://lymefriends.ning.com/group/healthylowcarbrecipes which might be useful in finding ways to not cheat on the sugars and some of the starches (there are bread, cracker, cake, and dessert recipes in there)

I've been off gluten this winter and I cna't tell that it's made a huge difference for me but I think it's hard to tell because whenver I 'cheat' I'm usually also using sugar or other 'bad carbs', plus my symptoms have been so variable. I think it'd be better if I at least was strict about not eating grains right now because I'm having such a hard time with inflammation (I think), but it's been difficult because at times I have appetite loss and am always fatigued this winter, so I'm not cooking as many food projects as I"d like to. What I did to compensate is to start making several dishes/snacks/breads/crackers in one sitting- it's less clean-up, and it's easier for me to make a bunch of stuff at once and have it in the freezer for the rest of the week or whatever, than to be able to ensure that I'd have energy to cook every day.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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jasek
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I cut out caffine and suger. Stay low on carbs and high on protein to hard to do if you go gluten free. Can't make myself do that. Different things work for different people,,just like supplements. Since you are new to this it will take you a while to figure out what's best for your body. It is long,arduous, and we are all so different.
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MariaA
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I found it was easiest when I slowly weaned down off of a higher-carb diet- i dropped candy first, then other desserts except for ice cream, went down from 2 spoonfuls of sugar in my coffee to one, then cut down to none, etc.
After that it was easier to drop the other starch carbs.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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Skinny Luigi
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Do you EVER cheat anymore, or have you managed to totally eliminate the need to eat sugars?

I've totally cut out pop, sugary snacks, cakes, etc, and I cut out caffeine altogether too.

Most of my sugar intake is from delicious Chinese pastries (working on cutting those out,, thats a hard one) and Easter candies (ugh, can't resist..)

I would like to cut both starches and sugars out, but I'm working on one at a time.. What do you think makes the most difference, cutting out the starches or the sugars?

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LightAtTheEnd
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Pardon the excessive length of this, but I have been experimenting with my diet for a year and a half and have gotten positive results, so I want to share what I've learned.

I changed my diet about 8 months before I got Lyme. Before that, I used to eat a lot of carbs and fast food.

I was trying to stabilize my blood sugar, control my insulin resistance and high risk for diabetes, and lose weight.

I went on a low carb, high protein diet, lost 35 pounds, and got excellent results for all the blood tests for blood sugar, cholesterol and triglycerides.

I should also note that I was first trying to lose weight on a calorie-limited, low fat diet, but it was terribly difficult and not very effective, and I was always hungry. When I switched to low carb/high protein, I found that I could eat double the calories I ate before, and still lose weight.

If you want to stay the same weight or gain, you just adjust your total carbs until that happens.

There are many diet books that take an approach similar to what I'm doing, but I made up my own diet rules. Any way of eating that reduces your total carbs and increases your protein will help your inflammation (if that diet agrees with you), so you can follow a book or make up your own.

Even just trading your refined carbs for unrefined ones like whole grains can reduce spikes of insulin and blood sugar. And of course, vegetables are carbs too, but the nonstarchy ones are full of fiber, protein and vitamins, so you don't have to limit those.

I also eliminated my yearly winter bronchitis due to asthma, which I think was related to inflammation. So I think the diet has been very good in reducing inflammation.

I am addicted to carbs, so I found it very difficult to accomplish. It has become easier since I found some substitutes for favorite foods, such as chocolate cake, biscuits, and pizza crust made from almond flour, and stevia for a sweetener.

I still eat sugar in my dark chocolate, but limit it to an ounce or two a day. There is a bit of sugar sometimes in some processed foods, but I am gradually changing to organic ones or homemade food. I avoid anything with significant sweeteners, real or artificial, of any kind.

I also gave up flour and grain. It's a lot simpler to figure out what to eat than trying to include and exclude a long list of different items.

Recently I have added back some whole wheat in low carb tortillas, and the occasional bit of pasta or potatoes in a frozen meal, purely for convenience, but my goal is to eliminate those eventually.

Protein sources (meat, eggs, cheese, beans, nuts, etc.), fat (in protein items, whole milk, real butter, coconut and olive oil, avocados, etc.), and non-starchy vegetables are imperative, and I can eat as much of them as I want (which is self limiting because they fill you up).

Low sugar fruits in controlled amounts are okay. Strawberries are my favorite and high on that list, which also includes other berries, stone fruits and melons, so I don't mind giving up bananas and tropical fruit.

I gave up both regular and diet soda. I already didn't drink coffee or alcohol, or smoke. Now I drink decaf green tea, whole milk, filtered water, lemonade made with fresh squeezed organic lemons and stevia, and occasionally, club soda, organic vegetable juice or chicken broth.

Unfortunately, the many gluten free products available tend to be high in carbs (from rice, corn, etc.) and/or sugar.

The only way I can do gluten free AND low carb AND sugar free AND avoid chemicals and artificial sweeteners is to cook for myself. But with Lyme and a full time job, I don't have time or energy for cooking, frequent shopping, and cleaning up.

At the moment I am experimenting with cans of organic soup and canned organic chicken, for something that doesn't require cooking.

Salads with organic vegetables would be great, as long as you add enough protein and fat to them, and make your own dressing that doesn't have high fructose corn syrup or trans fat in it. I just take too long to eat salads, and I keep veggies in my fridge too long and they go bad.

Frozen organic veggies and fruit are great because they keep, and you can cook them in the microwave.

I'm still working on sources of precooked organic or grass fed meat, but there is plenty available if you buy it raw and cook it yourself.

At restaurants, I can have meat and vegetables, or something with eggs, so I have been able to find something at most places. I just have to resist the lure of rolls, dessert, tortilla chips, french fries, etc.

The problem for me is resisting the carb cravings. I used to get physical ones frequently, but the better I stick to this diet, the less I get those. It apparently has to do with your insulin levels.

I still get emotional cravings sometimes. I either stave those off with homemade "substitute" foods or I give in and binge on carbs every once in a while. Still working on eliminating that.

Overall I have felt much better when on this diet than off it, even though it is not perfect and I cheat sometimes.

I am sure that continuing to follow this but making it gluten free would also help me. However, I have read that to really benefit from a gluten free diet, you have to follow it completely all the time. I don't think I can manage that, so I'm not trying.

If I can find a way to sweeten unsweetened organic chocolate with stevia, I would give up all sugar. Occasionally I eat a little low carb ice cream or cheesecake, even though it has maltitol and/or Splenda.

Eating in restaurants, I'm probably exposed to MSG and other chemicals, as well.

The only way to be really healthy is to make all your own food, but that is not practical for me. It takes a big investment of time and energy, it is expensive, organic ingredients may not be available in your area or by mail, and it makes travel, holidays and social events difficult.

I think I have found a diet that works for me personally, and has a lot of benefits even though I don't follow it perfectly. I know that reducing inflammation helps reduce Lyme symptoms.

Insulin, leptin, ghrelin and other aspects of metabolism are also connected to hormones and immune function.

According to books I read reviewing the scientific evidence, reduction of inflammation by lowering carb intake (eliminating refined carbs) also reduces risks for diabetes, heart disease and cancer, and in my case, helped with asthma. So whether it noticeably helps your Lyme or not, it must help something.

When you start a low carb diet (20-120 grams of carbs per day after subtracting grams of fiber), your body gradually switches from burning mainly carbs to mainly fats (including your stored fat) for energy. The first few days, you can have low energy or feel like you have the flu (just like a small herx, LOL).

You retain less water when you eat less carbs, so you lose some water and perhaps unbalance your electrolytes during the first couple of days.

Then you start to feel a lot better than before, as inflammation is reduced in your body. I just mention that because you don't want to follow a low carb diet for just a couple of days and go on and off it. You need to try it, without cheating, for at least three or four weeks to see if it works for you.

In any case, reducing refined carbs and processed foods is a step in the right direction for everybody.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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MariaA
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quote:
Originally posted by Skinny Luigi:
Do you EVER cheat anymore, or have you managed to totally eliminate the need to eat sugars?

I try to keep stevia-sweetened sweets around. My favorite lately is stevia-sweetened coconut milk ice cream (I make it) and stevia-sweetened egg white meringue cookies (both recipes are in the lymefriends low-carb recipe forum). I absoutely do cheat now but it's not a good thing. It's easier if I have energy to cook and it really sucks that for me one of the problems is occasoinal appetite loss, which I think is from babesia.

quote:


I would like to cut both starches and sugars out, but I'm working on one at a time.. What do you think makes the most difference, cutting out the starches or the sugars?

Honestly, I think the sugars are more useless and probably more damaging, unless the starch is wheat and you're allergic to gluten (you may be and not know that) or some other inflammation-causing issue such as a corn or soy allergy.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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MariaA
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also, I have trouble keeping fruit out of my diet, so I do eat it quite a bit more than is good for candida- I figure that if I'm craving it so much it's probably for reasons other than sugar, and is related to other nutrients. Fruit comes with lots of fiber that slows down absorption of sugars, so while that doesn't really help gut candida I don't think, it's a bit better from some other blood-sugar control perspectives (pre-diabetes is not a problem I have, but that's the one I'm thinking of). Fruit juice or any other type of sugar whether glucose, sucrose, or fructose, all raise blood sugar pretty dramatically and are probably ultimately bad for your immune system.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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Richard1062
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Stevia is sweet enough, but we couldn't get used to the after-taste. So now we use raw agave in small amounts. Yummy!

Have you tried agave, Skinny? Not great, but still it's better than sugar.

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Lymetoo
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The best "no after-taste" stevia is "Sweet Leaf."

Avoid alcohol like the plague. Sugar is just about as bad, esp if you get Candida on top of Lyme!!

Going gluten-free has made a huge difference for me.

Staying away from "nightshades" will also help you if you have pain issues.

Such as:

peppers
spices
eggplant
tomatoes
white potatoes
peanuts
Tabasco

http://www.whfoods.com/genpage.php?tname=george&dbid=62

[ 03-15-2010, 09:17 PM: Message edited by: Lymetoo ]

--------------------
--Lymetutu--
Opinions, not medical advice!

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thejoje
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What are Chinese pastries???

--------------------
When we are no longer able to change a situation---we are challenged to change ourselves.
(Viktor Frankl- Holocaust survivor)

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gwb
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http://www.westonaprice.org/

Gary

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MariaA
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agave is very much sugar- it's 90% fructose. there's no difference in terms of candida. The fact taht the manufacturers of agave sell it as being low-glycemic-index is basically a scam.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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kidsgotlyme
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My daughter's main symptom is joint pain. When she is on the gluten free diet, she feels SO much better.

I was in the hospital last week for four days and finally had my gallbladder removed. My daughter had to stay with others, and so it was hard for her to stay gluten free.

She definitely feels it. Thankfully, she's back home today, and is getting back to gluten free tomorrow.

I would say it's worth all of the hassle and expense. It takes a little getting used to, but once you get the hang of it, you feel better.

I am doing it with her, and I even feel better. We eat a lot of raw salads and we just LOVE avacaodos with organic corn chips we get at Sam's Club.

Christie

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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KS
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I didn't remove anything from my diet and got well.

However, I was sure to eat a variety of healthy food in addition to my nightly bowls of ice cream or morning cups of coffee.

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Dekrator48
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Diet makes a difference for me.

Sugar/high fructose corn syrup are the worst for me.

I avoid them and have for a couple years.

I had one exception lately. My son left Friday for a one year deployment to a war zone with the Army.

I have also had alot of stress from some family members in the last 4 months.

I was feeling really down on Sat, so I called a friend and we went shopping at our mall.

For the first time in 2 years I said "I think I don't care what I eat today"...and I ordered teriyaki chicken (no MSG) from the food court.

The sauce was obviously loaded with sugar. I know from experience that it takes 1+ days to feel the effects of the sugar.

On Monday morning I woke up and could barely move my neck, it is sooo painful. My neck and shoulders are stiff and very painful.

I also know that it takes 2+ days for the effects of the sugar to wear off.

I will never do it again.....it is just not worth it.

I also avoid gluten, dairy and soy.

It DOES make a difference to avoid foods that are inflammatory, like sugar and gluten.

If you have not tried it for a month, please consider it.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Skinny Luigi
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Wow, thank you for the insightful responses everyone, particularly LightAtTheEnd.

I'm living with a friend's family right now and it is very difficult to eat a strict diet, but I will be moving out soon and will definately be making some major diet changes at that point.

Also, to thejoje: I live in Vancouver, BC and there are a lot of Asian groceries and bakeries around. I'm particularly speaking of T&T Supermarket (http://www.tnt-supermarket.com/en/)

I apologize for the brain-dead question, but what foods have gluten in them exactly? Grains? Are oats and cereals the worst for this? Should I just avoid carbohydrates altogether? What about rice?

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LightAtTheEnd
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www.celiac.com has details.

Wheat, rye, spelt and kamut, I think. Check that site or search for earlier posts to be sure. I'm not sure about oats. Corn and rice do not (but they are high carb and low fiber).

The trickier part is recognizing ingredients listed on packaging that might contain gluten. Products may also be processed on equipment that comes into contact with gluten.

Here is a list of unsafe ingredients for gluten-free diets.

http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html

There is also a list of safe ingredients on the same site.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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Dekrator48
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Also include barley in the foods to avoid that contain gluten.

Gluten is hidden in many things. The website above is very helpful.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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MariaA
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If you turn out to be sensitive to gluten, watch out for things that contain 'malt'. Sometimes that's barley malt. I've literally seen a celiac friend of mine turn into a raging monster personality-wise, and heard her say that her gut also reacted, when she had a couple of beers that had been made with barley malt. It's not the alcohol in her case, she tolerates gluten-free beer fine.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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Lymetoo
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Be sure to go to www.celiac.com mentioned above. You must avoid it completely in order to get the results.

Celiac.com has lists of foods to avoid and lists of OK foods. Print that out for the next time you go shopping.

You will have to give up Chinese food as it contains soy sauce which contains wheat/gluten. You CAN make your own though with gluten free soy sauce from the health food store. The health food store is your friend!!!

There are many foods (esp on the store shelves) which contain hidden gluten.

--------------------
--Lymetutu--
Opinions, not medical advice!

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levity101
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Skinny,
Couldn't help but notice your choice of name--do you have trouble gaining weight?

My son is 20, very thin, and hadn't gained weight in years. He also had a lot of nausea. A couple of months ago he decided to cut out most sugar from his diet and he has actually gained about 6 pounds. Not what one would imagine, but apparently for him sugar is a major factor with inflammation.

He still eats carbs, but avoids desserts and sweets. Occasionally he has a little of some sugar-free product, although we know those aren't good--but it satisfies a craving. He uses xylitol in small quantities for sweetening beverages.

Mostly, he's able to comply and it seems to have lowered his general level of inflammation and he's able to tolerate antibiotic treatment better with less flaring. He rarely has nausea anymore and is very happy to be putting on some weight.

Nancy

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Wolfed Out
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This is my diet, daily:

1 or 2 bananas and 1 apple

Uncle Ben's Brown Rice with
broccoli, peas and carrots
or stir-fry vegetables

Chicken, Steak or Beef with
broccoli, peas and carrots
or black beans
or brown rice

I always fry my vegetables with Olive Oil, or steam them on the stove.

Snacks include:
Almonds
Fruits (apples, bananas, pineapple)
Salad with Olive Oil and Lemon as dressing
Dark chocolate
Teddy Grahams (my vice, but not EVERY day)


I started this diet 2 months ago, before I had a full diagnosis and noticed a tremendous benefit from it. I just started my real treatment protocol with ABX, and am doing very well on it. I attribute my ability to handle the meds and reactions to my treatment because of:

My healthy diet
3-4 times weight lifting in the gym
Drinking 6-8 bottles of water daily
Eating 2-4 whole lemons (minus the skin)
No alcohol

Diet was the first thing I altered to begin my rehab and believe it should be a major focus of everyones treatment. Although everyone reacts different to Lyme, these are the changes that have happened since I changed my diet and added supplements.

Reduction in fatigue, more energy
More clarity in thought
Eye static and peripheral sight has improved
Joint inflammation is visibly reduced
Skin and hair look healthier

BTW, I'm 26 years old and male.

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lymebytes
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I had to change everything almost. Stopped drinking milk, no coffee (which I miss), try to avoid gluten as much as possible and processed foods too. I don't eat sugar of any kind.

Basically stick with vegetables, proteins (chicken, turkey, beef)brown rice, fresh fruits etc.

I have just come to the conclusion not to put anything into my body that doesn't help it or feed it well in some way. It does really help.

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www.truthaboutlymedisease.com

Posts: 2003 | From endemic area | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
jasek
LymeNet Contributor
Member # 12395

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Wolfed out...why the lemons? Stevia has a new product. You need to get it in the packets."Stevia Extract".Also ther's Truvia made from stevia. Even though there is gluten in this, my favorite treat are "VitaTop Muffins", choc. corn, banana nut. Works for me.
Posts: 161 | From midwest | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

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