Omg...i Might Be On To Something

[tom]

Yeah, nit-wit spice never gets in trouble!!

omigod Carla I'm glad I wasn't drinking anything when I read that!!

Donna, speaking of cookies, I was in WhF today and for some reason when I was near the gluten-free cookie shelf, I took notice of it. I don't usually.

But all I thought was "mmm mmmm I sure used to love those Pamela's Gluten-free Casein-free ones". No slowing down, no looking at a box.

That "used to love" was mostly pre-candida diet, but after 18mos on the diet, I did begin to explore for 'tolerable' treats.

And, like everyone else, I did indulge in some during the 6 mos before this magical soy-free June began.

While knowing it wasn't exactly *good* for me, it didn't seem actually *bad* either.

I don't believe that anymore.

Going a week or 2 w/out treats and feeling better, I'd actually rationalize that I felt good enough that it'd be OK to feel just a wee bit not-as-good as the tradeoff for enjoying/scarfing a box of Gluten-free Casein-free cookies.

But it doesn't really work that way. I don't think it's just a step back. It's more like giving ground to the enemy.

I believe there's a cumulative effect in skipping the 'tolerables' that's greater than it seems it should be.

[tom]

......it's hard to stay away from everything you have to at times.......Tom's the exception here.

Also I found out that my doc here is giving up his practice so this will be my new doc. I really, really like him- old school, good sense of humor and he REALLY listened.

Yay Bev, sounds fantastic!

[CarlaB]

omigod Carla I'm glad I wasn't drinking anything when I read that!!

Me, too. I'd hate for you to ruin your phone!

Bev, that would be great if it were from the Bartonella! I've been on Biaxin for 8 months ... I believe it gets to the bartonella (I don't know if I have/had it, but I do have some symptoms of it) ... but I can tolerate gluten now with no ill effects (Really, Tom, remember the root of my problems are not food related!).

Now any food can indescriminately bother my tummy ... I had SEVERE stomach distress today after eating some pre-packaged rice noodles that came like Ramen with a seasoning packet. They were gluten-free, but bothered me, BAD. I couldn't make myself anything more complicated to eat because of my herx ... anyway, oregano oil and peppermint oil helped a lot.

But foods don't seem related to any other symptoms, except foods that contain mold.

BTW, this herx stinks.

Fudge

1/2 cup cacao nibs (ground - I use a coffee grinder)

1 cup almond butter

4 tbsp. coconut oil

1/8-1/4 cup agave syrup

1 tsp. vanilla

1/4 tsp. salt

Mix all ingredients. Pour in greased baking dish. Freeze 1/2 hour, then move to refrigerator.

I use less almond butter, more coconut oil ... you can adjust the recipe to your taste. I use 1/8 cup or less agave.

[Rachel--24]

That was so weird, we were moved to the Gab section for a couple minutes there, I was all discombobulated

Apparantly we have been too gabby for the Leaky Gut forum so I would just like to remind everyone to stay on topic if we would like to keep the thread in an area where its most likely to be helpful to others.

Personally, I feel that we've been doing a good job of this but maybe to others it doesnt appear that way??

Anyways, if the thread does get moved it will still serve its purpose for us....but maybe not for any of the other people who are continuning to pop in here looking for answers. They wont necessarily look for help in the gab/chat room.

There are some other threads which are just for the chit-chat so I guess when we feel "chatty" we can post in there....otherwise we risk having this thread moved permanantly to gab/chat.

If you guys feel the thread should remain in the leaky gut forum then we all need to make the effort to keep it on topic. I cant "police" everyones posts and it would be exhausting for me to even try. This thread is always being moderated just the same as any other thread so we need to be aware of that and try to post things which would be helpful to people who are reading.

I know I've mentioned this in the past because we have gone way off topic at times. Recently I havent noticed that but other people reading may not feel the same.

Regardless of where the thread gets located to...I would still hope that it would serve the purpose of providing info. for those who are seeking it.

[AndreaB]

Oh yeah- he bet me a donut it was bartonella and not celiac!!!!!!!!!!!! At any rate, I'll try to pop in on the days that I'm actually awake but I'm very very sleepy!

I'm so glad you had a good appointment and more answers. Hope you feel more awake soon but you're going through a lot right now. We'll be here whenever you feel up to posting.

I kind of need a partner in crime to bounce things off of, so if anyone is interested pm me.

I'd like to be a fly on the wall just because I think you'd come up with good things.

Personally, I feel that we've been doing a good job of this but maybe to others it doesnt appear that way??

I think we've done quite well too. I don't know why we'd be considered too gabby when we've talking about a lot of health related stuff as well as appointment posts.

[Rachel--24]

I had a really great appt. tonight with Anna.

We went over my lab results from July.....a repeat of the Intestinal Barrier Function test I had back in December.

Basically it tests for antibodies of the main contributers to Leaky Gut.

It tests for IgG and IgM antibodies towards...

Dietary protein

Yeast

Aerobic Bacteria

Anaeorbic Bacteria

These were my results in December.

IgG Dietary Protein 7 (0-41)

IgM Dietary Protein 72 (0-48)

IgG Yeast Antibody <400 (<734 -2475)

IgM Yeast Antibody 8196 (<801-2248)

IgG Aerobic Bacteria 7 (0-53)

IgM Aerobic Bacteria 111 (0-48)

IgG Anaerobic Bacteria 12 (0-76)

IgM Anaerobic Bacteria 44 (0-73)

So obviously my yeast antibodies were through the roof. I was one of the worst shes ever seen with regards to the fungal problems. Not the best feeling when we're talking about someone who's traveled around the country as well as Canada and worked with some of the sickest people.

So these were my newest results from July.

IgG Dietary Protein 15 (0-41)

IgM Dietary Protein 34 (0-48)

IgG Yeast Antibody 1613 (<734 -2475)

IgM Yeast Antibody 3495 (<801-2248)

IgG Aerobic Bacteria 24 (0-53)

IgM Aerobic Bacteria 82 (0-48)

IgG Anaerobic Bacteria 17 (0-76)

IgM Anaerobic Bacteria 43 (0-73)

So....it looks to me like *some* healing must have occurred. This is probably alot to do with all the improvements I mentioned in my "update".

I think the Leaky Gut and the yeast/mold issues contribute to over 95% of my symptoms.

The dietary protein is no longer elevated. Maybe some healing with the gut?? It could also be due to the treatments directed at these immune responses and I think this is more likely because my gut does seem to still be very leaky.

The MOST significant change is with the yeast antibodies. Down from 8196...to 3495!!

She said that this is the BIGGEST decrease in antibodies shes ever seen in ANY of her patients!

How exciting is that!

She said she never expected me to have such a big improvement. She said that the majority of her patients are coming back with a decrease of around 30-40%. She said for me she was just hoping to bring it down 30%...at the most.

She said she would have been very happy if I were to make a small improvement...bringing it down maybe by 1/3. Instead I dropped by more than 50%.

I think I must be an over acheiver.

She said I proved her wrong... that she underestimated me and next time she will think again.....cuz this just goes to show that even the worst patients can make BIG improvements.

My Aeorbic Bacteria antibodies went down as well. So in every area I showed improvement. YAY!

Another thing which I find very interesting is the IgG antibodies. They are always very low...not just in this test but in all of the testing I've had done. One Dr. had told me that my body wasnt producing significant IgG to even have a test come back positive with the IgG antibodies.

I was told it was most likely because my immune system was compromised. Now you can see with these test results...as my IgM's are going down....the IgG's are going up. I think this is a very good sign as far as how my immune system is functioning.

She also said that shes been in contact with the lab and has asked which Dr.'s are having the biggest decreases in these antibodies. She wanted to know what other people are doing to bring down the numbers.

They told her that they arent seeing big decreases anywhere else. Her patients are having the biggest improvements in these antibody tests.

So she said it looks like waht shes doing is working and shes getting the best results in the whole country.

She said she also asked Dr. S. what he's doing as far as treating Leaky Gut. He told her he's not doing anything.

She probably wanted to see if something he's doing is contributing to these results. I know for me its nothing that he's done because he hasnt actually been treating me....the majority of my treatment has come from the other people I see.

So she said that I'm actually not taking any of the things shes got her other patients on because I dont tolerate the herbs very well....and those supplements have alot of herbs in them. I told her maybe I could take something else now since I'm not doing Nystatin anymore.

She didnt want to add anything new for me. She just wants me to stick with what I've been doing because its obviously working.

So yeah....it feels pretty darned good to go from always being classified as "one of the worst" to actually being the one who's made the BIGGEST improvement...with regards to this issue anyways.

We talked about other things as well....mostly gluten related.

After more than 2 years gluten-free (except for those 2 brownie bites earlier this year) I totally went crazy this morning and ate 3 slices of banana bread and 1 big blueberry muffin.

This took place at work and believe me...it didnt go unnoticed and I got lectures for most of the day...including one person actually yelling at me.

She told me (and not jokingly) that its bad enough that I'm eating these things but then on top of that I dont know when to stop....that I totally overdo it and then she called me a "gorger". She said I was gorging on the food.

Well yeah....wouldnt most people who have been totally deprived for this long??

Oh well...I'm still known for going overboard with food...and I cant blame it all on deprivation. I was just born this way I think.

I had all kinds of reactions but no way to really know that they were caused by gluten.....since the stuff I ate had ingredients lists that were a mile long....and of course they werent organic either.

Anyways we talked about all of this at my appt. because I asked her if when my gut heals completely if its possible that I will no longer have a gluten intolerance? She had alot to say about that and then I told her of what I did earlier today and we discussed all the possibilites for the reactions I got.

She got out the gluten panel and retested me on the whole panel and we retested a bunch of other things as well.

The results were VERY interesting. I'll have to post about the gluten stuff tomorrow since its now past my bedtime.

[AndreaB]

That's one thing I looked at with the numbers you posted but didn't know what to make of it.....glad you explained. I didn't know the IgG going up would be a good thing. Just think of where you'll be 6 months to a year from now.

[NoGluGirl]

Dear Julie,

Now it is Sister Golden Hair, Moon Blossom, and Rainbow Toes! We have our own little hippie group! The music of 60s and 70s was great. I am a big fan of David Cassidy, Foreigner, Blondie, The Mamas and The Papas, The Monkees, The Beatles, America, Cher, and many more! I relate very well to "Half Breed" by Cher.

It is difficult to say whether it is the wormwood or the heat making you feel strange. There are a few possibilities. It is not easy picking one out. I know wormwood can have narcotic effects on people. However, the heat can exhaust you and make you feel strange, too.

I am a willing partner in crime! I am collaborating with someone else on the forum. We are working on a cookbook. He wants me to do a cooking show. We decided we would put it on YouTube. That is where it is most easily accessible.

I have never had the Lara Bars. I should try one. The coconut milk in ice cream sounds like it would be great! I think you should go for it! You never know until you try! I think it sounds very tasty!

Dear Rachel,

You have improved quite a bit! The Candida is dramatically reduced! What exciting news! I am so happy for you!

Those test results are very encouraging! The LED is probably contributing a lot as well.

Three pieces of banana bread and a blueberry muffin would explain the funky feeling! Do not be hard on yourself, though. You have made great strides! We are all very proud of you and what you have accomplished so far! Going all of these months eating only a handful of foods is going to make you feel deprived. It is only normal to rachel things after so long.

Dear tom,

Hey, I am more normal than you are! I may have an unrealistic crush on a man I have never met, but I still know it is a longshot. Maybe it is nuts to other people. I cannot explain my feelings about him very well. I suppose you would have to feel connected to someone that way to get it.

Bob has abandoned you, I think. He has decided to pop in now and again. You will see him on here periodically. Every once in a while, he will post. Maybe he is overwhelmed my the number of women. There are so many of us! Charlie and Grump come on here some, too.

I have heard Candida causes hands to be cold. I get that all the time. It is really odd. I can be so hot, I feel like I am going to explode, yet my hands are freezing! They will be like ice.

So, you get to go to Monterey this weekend? How cool!? That sounds like fun. What all do you plan to do while there? I hear the beaches are quite nice in that area. A lot of people like the Marina Del Rey area as well. I have never been to either.

Dear Donna,

That is so funny, you mentioning Rainbow Toes for your hippie name! Part of one of my e-mail addresses is Rainbow Geisha! My nickname with my friends in high school was Rainbow. Everyone had a nickname. Ashley was Fuzzby or Ashes. Kaylon was K-Bug. Steph was Stephie Mar.

I am sorry to hear you did not sleep well again. As far as I know, the chrystals do not have to be mounted or even polished. They may work better polished, though. Charging them in the moon or sunlight is also recommended to keep their powers replenished. Make sure to wear it all the time to protect yourself from the psychic attack. You had not come into contact with those individuals who make you feel drained again, have you?

The latte and the cookies might have caused some of this trouble. It is difficult not to give in to temptation periodically.

We all do it! Do not beat yourself up. Just get back on the horse after you fall off is all you can do!

It is not surprising you react to the insect and spider venom. That BioSet report sure shows a lot of reactive substances for you. Hopefully, that will ease with time. Here is something interesting: horses and rabbits are immune to the venom of a black widow. Who knew? Maybe they can use these animals immune systems to help those who do have bad reactions.

So you know how I feel about Billy. At least someone does. Maybe one day I will get to be with him. That would make me so happy! People probably told Katie Holmes she was nuts when she used to fantasize about Tom Cruise, but look at them now! They are married and extremely happy!

Dear Annaem,

Corn does have gluten. I am not sure if it has a similar protein structure to that of wheat, barley, oats, or rye, though.

It might not. I am not surprised to learn Celiacs becoming sensitive to it after so long. It is in so much we eat.

It is nice to know rice is less allergenic. Really, I read it is essential to do a rotation diet to avoid developing new sensitivities. You can develop one to any food you consume too frequently. Books on Candida often talk about this. Welcome to our thread, by the way!

Dear Bev,

It is so great to hear from you! We were worried! I am so glad you found a terrific doctor to help you. OMG! I cannot believe all of the nasty co-infections you have! That is awful! No wonder you feel so rough!

Can Bartonella really mimic Celiac? I never knew that! It would be great if you could go back to eating gluten again. Then you could feel normal. We are routing for you!

I am glad the doctor put you on something to help your Thyroid. When it is subclinical, many doctors do nothing. They tend to be lazy with that. Meanwhile, patients are tired and gaining weight no matter what they try. Then, the doctor blames the patient for the trouble with their weight! How annoying is that?

My adrenals are probably terribly fatigued as well. I know eliminating caffeine and sugar helps. Transfats also need to go for proper function. That is where frustration often comes in. Transfats are in virtually everything.

Dear Andrea,

T is doing good. I am glad to hear that! Thank goodness the pain went away after she rested! Poor little Seth! He sure has a rough time of it. As long as you reassure him he is alright, he should do okay on the chi machine.

I agree that we cover health issues very well, and blend it nicely with some silliness. You cannot stay serious all of the time. It is not healthy. Scientificness mixes well with the other stuff on here. As long as we discuss Candida, Mercury, Lyme, and Leaky-Gut, we should remain at our home in this category. I do not think we need to worry. Our thread is in the right place!

Dear Mia,

I know you will be getting treatments today. You have IVs, and a colonic, right? Let us know how you do. We are keeping our fingers crossed for you! Be sure to give us an update!

Dear Carla,

Your hair looks wonderful with the highlights! I am glad you will get those again. I bet they will really look terrific now that the other shade lightened up. I had thought about changing mine, but stripping the black dye was more difficult than the hairdresser expected it to be. The result was pretty horrid, to be honest. Let's say it was orangish. She could try other things, but I am not so sure that would be a good idea.

Let us know when you get that ice cream machine! We will want to know all about it! You know how we are! That should help keep that weight on! Making it with coconut milk will really be delicious, and add some much needed fat and calories for you! Meanwhile, I am happy Morgan is so close to her goal!

Sincerely,

Jin

[Rachel--24]

That's one thing I looked at with the numbers you posted but didn't know what to make of it.....glad you explained. I didn't know the IgG going up would be a good thing. Just think of where you'll be 6 months to a year from now.

Andrea....heres the diference between IgG and IgM antibodies:

IgG. IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus).

IgM. IgM antibodies are the largest antibody. They are found in blood and lymph fluid and are the first type of antibody made in response to an infection. They also cause other immune system cells to destroy foreign substances. IgM antibodies are about 5% to 10% of all the antibodies in the body.

In general, IgM antibodies indicate acute or recent infection. The appear early during the course of the infection and then disappear. IgG antibodies appear later and last longer, so they indicate past infection.

[dlp252]

Good morning all...well apparently the good sleep was short lived. Oh well...I have a PT appointment today, so maybe the massage, short as it is, will help.

Julie - I'd offer to be a participant in your MySpace idea, but I don't cook, so not very helpful I think, lol. I AM however, experienced with food intolerances and what happens when you ignore them.

We'll be on a very limited diet most of next week as we will eat what the children can eat.....better get my chocolate fix in this weekend.

Yeah, I seem to be on a self-destructive binge these days, but am nearly ready to get back to being strict. I can't seem to force that, something has to click in my brain, and once it does I can be so strict you wouldn't believe it...may even make Tom appear to be a racheller. But if the brain doesn't click, it just won't happen no matter how hard I try. I don't envy your week ahead!

Donna, I hope you're feeling better, soon. You do know that Starbuck's soy is vanilla flavored already, don't you? Doesn't that make one fewer bad thing for you leaving out the vanilla? But, the soy has sugar. We'll just blame it on the chlorella ... and the cookies ... it couldn't have been the latte.

Yeah, I know they use Silk Vanilla soymilk (which is the only reason I'll order it), but it's not usually sweet enough for me... So the sugar-free vanilla syrup is also pretty bad for me...but I'll still blame it on the chlorella and the cookies.

I just had an appt yesterday in NYC with a neuro- Lyme specialist in NYC (one of the founders of ILADS!) and basically I happen to be the hostess to to four co-infections along with the Lyme. I've got Bratty Babesia, Bad Boy bartonella, icky erlichiosis and mean mycoplasma. So he added two more Lyme meds and he also said it's very clear that I have subclinical hypothyroid (under-active) so he gave me Armour and I also have adrenal burnout so he gave me a booster for my adrenal gland.

Hi Bev, glad you pooped in! How did they test for mycoplasma? The paragraph I quoted above applies to me with the exception of the doctor, lol. I just saw a report from my BioSET practitioner that mentioned mycoplasma, and I'm thinking I may have to be tested for it. The lyme is also affecting my thyroid, but it's not showing up in testing (other than ART). My adrenals are STILL not working right.

Donna, speaking of cookies, I was in WhF today and for some reason when I was near the gluten-free cookie shelf, I took notice of it. I don't usually.

But all I thought was "mmm mmmm I sure used to love those Pamela's Gluten-free Casein-free ones". No slowing down, no looking at a box.

That "used to love" was mostly pre-candida diet, but after 18mos on the diet, I did begin to explore for 'tolerable' treats.

And, like everyone else, I did indulge in some during the 6 mos before this magical soy-free June began.

While knowing it wasn't exactly *good* for me, it didn't seem actually *bad* either.

I don't believe that anymore.

Going a week or 2 w/out treats and feeling better, I'd actually rationalize that I felt good enough that it'd be OK to feel just a wee bit not-as-good as the tradeoff for enjoying/scarfing a box of Gluten-free Casein-free cookies.

But it doesn't really work that way. I don't think it's just a step back. It's more like giving ground to the enemy.

I believe there's a cumulative effect in skipping the 'tolerables' that's greater than it seems it should be.

Yeah, I don't really know why I go by that section...there is nothing but trouble there for me. I believe you are right on about the cumulative effect...I've said it before that I think the bad things are okay in and of themselves in small numbers, but they definitely have a cumulative effect, so it stands to reason that the opposite is also true...if you avoid them the cumulative effect is also good.

I know all that and still can't get my brain to "click" as mentioned above.

I had a really great appt. tonight with Anna.

Wow, your results were FANTASTIC!!!!! and very EXCITING!!!

Did you get the summary, lol.

You had not come into contact with those individuals who make you feel drained again, have you?

Yeah, almost every day.

[AndreaB]

Morning all!

Hope all is going well for you today Mia!

Thanks Rachel for postint the IgG/IgM stuff.

Donna....what are we going to do to get you some more sleep? I don't know how you do it. I don't do well on too long of periods without much sleep.

Mitch ran into someone at Fred Meyer last night in looking for gluten free stuff. He got to talking with her and found out her little one has celiac. I think he said she did too. Anyway, her son has had intestinal surgeries already (he's 31 months) and she is interested in what we are doing.

I'm hoping to get in touch with her and invite her to go up with us to an appointment so she can see what it's like. Mitch got her phone number and email address. I think he said she's a member here too. The only possible difficulity is whether we can fit three car seats in the back row of the van......

[dlp252]

Wow Andrea, hope you can connect with the other lady!

Yeah, I guess I'm so used to not sleeping that I just kind of zombi my way through the days, lol.

[CarlaB]

I think we've done quite well too. I don't know why we'd be considered too gabby when we've talking about a lot of health related stuff as well as appointment posts.

It may not be that we're too gabby, it may be that not all our stuff is about leaky gut. Scott asked me months ago to start a Lyme thread and put it in the "related disorders room." I finally felt good enough to do it, but it was moved to the gab room ... then back to related disorders ... then back to gab. Technically, it's not related to celiac, yet at the same time, it's not really gab either. That may be what's happening to us ... it may not be our chattiness at all.

His point in asking was that Lyme talk is not unwelcome here, but it's a celiac board, so the talk of it should be done sparingly and in the right place, so start a thread on it. And, if you've been on the thread, it has NEVER gotten off topic ...

The MOST significant change is with the yeast antibodies. Down from 8196...to 3495!!

She said that this is the BIGGEST decrease in antibodies shes ever seen in ANY of her patients!

How exciting is that!

YAY!

So yeah....it feels pretty darned good to go from always being classified as "one of the worst" to actually being the one who's made the BIGGEST improvement...with regards to this issue anyways.

You couldn't have made the biggest improvement if you weren't the worst!

After more than 2 years gluten-free (except for those 2 brownie bites earlier this year) I totally went crazy this morning and ate 3 slices of banana bread and 1 big blueberry muffin.

This took place at work and believe me...it didnt go unnoticed and I got lectures for most of the day...including one person actually yelling at me.

On what you ate, and on the person yelling at you!! I can't say that I don't relate and don't know why you did it ... I did the same thing with no reaction ... maybe I shouldn't have told you about it.

She told me (and not jokingly) that its bad enough that I'm eating these things but then on top of that I dont know when to stop....that I totally overdo it and then she called me a "gorger". She said I was gorging on the food.

Well yeah....wouldnt most people who have been totally deprived for this long??

I am wondering ... did this woman who could point the finger at you have a perfect body and is she in perfect health? Perhaps there was some transference going on ... St. Augustine said that if there's a trait about someone else that really bothers you, you need to work on that trait yourself! You won't notice a defect in someone else if you don't have that defect yourself. That makes it easier mentally to take these kind of behaviors ... you know she does the same thing herself. Otherwise, why would such a thing get her so angry at you?

Jin, to strip off hair color, you have to take it all off ... take your hair completely blonde, then redye it ... perhaps it would be easier to just start using a slightly lighter color the next few times you dye it, then lighter again, so the black can grow out and not have that noticeable of a change. Taking it blonde and dying it would be terrible on your hair! Not to mention, expensive, and you'd have to have someone really, really good or it will turn orange.

[Green12]

Rachel, I am so happy to hear you had a great appt. last night

I have found lots of sources that report "gorging", or overeating binges, can be a direct result of dysbiosis, where chronic candida infections, other anemia, fungis, parasites, etc. are present in the body.

I don't think you should be too hard on yourself about all of this (the eating of the gluten yesterday), same thing I said to Donna. We've all done it, we're all human. The focus is not in your fall, but how you rise from that fall...where you go from here, and it sounds like your talk with Anna last night and all the information she shared will turn this into a learning experience for you and the positive reinforcement you received from your improved test results will take you onward and upward

I guess I am kind of bothered by the fact that we are being accused of not staying on topic, too chatty, and maybe irrelevant to this community, maybe it's just the mood I am in and this is probably a foot in mouth moment for me....and maybe it's not place to say anything since I haven't been here for several months now, but I went back to the beginning of this thread and I joined in on page *2*, so I feel very close to its roots and purpose.

Last night I looked over the previous 4 pages or so and there wasn't one post that didn't talk about some kind of scientificness, treatment, test, protocol, foods, symptom, side effect/herxing/reaction, and so on and so on. Since we have been at it for over a year of course we have gotten to know each other and have a lot of inside jokes, but it all has to do with leaky gut issues and additional food intolerances and the different treatments we are doing and our set backs/progress, our support for one another through it all, all the while living a gluten free lifestyle. I fail to see how that isn't staying on topic, or relevant.

Jin, your cookbook/cooking show idea sounds great. I would love to hear more details. Is it only gluten-free, or does it include other intolerances as well?

Andrea, I also hope you can connect with the mother of the sick child. Breaks my heart to hear her son is struggling so.

Donna, we must get you to sleep! Has every option been discussed with your drs?

A couple of questions, does anyone know anything about citricidal? I think that's how it's spelled, for parasite treatment.

Also, those of you who exercise do you find it is a totally different ballgame when chronic illness is present?

[Green12]

Carla, I forgot to say thanks so much for the "fudge" recipe. It sounds really good, I want to try making it soon.

Also how is the herxing today? Is there anything you can do to calm it down a little? I was curious if the sauna helped, or anything that would draw out the toxins....

[dlp252]

I have found lots of sources that report "gorging", or overeating binges, can be a direct result of dysbiosis, where chronic candida infections, other anemia, fungis, parasites, etc. are present in the body.

Okay, I'm claiming this as my reason!!!! I definitely have dysbiosis and lots of infections and stuff. So I can say the dysbiosis made me to it.

I guess I am kind of bothered by the fact that we are being accused of not staying on topic, too chatty, and maybe irrelevant to this community, maybe it's just the mood I am in and this is probably a foot in mouth moment for me....and maybe it's not place to say anything since I haven't been here for several months now, but I went back to the beginning of this thread and I joined in on page *2*, so I feel very close to its roots and purpose.

I know, I think I joined in on page 7 so have many of the same feelings as you do.

Donna, we must get you to sleep! Has every option been discussed with your drs?

A couple of questions, does anyone know anything about citricidal? I think that's how it's spelled, for parasite treatment.

Also, those of you who exercise do you find it is a totally different ballgame when chronic illness is present?

Well we haven't discussed hard drugs, lol. At this point I'd be willing to try Ambien or something like that. I will discuss with him when I speak with him next...or maybe with the HN doctor. Heck if I went back to my regular doctor I'm sure she'd give me some.

Don't think I've heard of citricidal.

Exercise is definitely a totally different thing when chronically ill. Before I got zapped in the last two years, I was doing some pretty intense cardio and was lifting fairly heavy weights (well, as heavy as I could go without a spotter).

Not only am I not capable of doing the intense stuff anymore, but my doctor actually doesn't want me to do it anyway now...he says it would put more stress on my already stressed body, adrenals, etc. My PT/chiro guys don't want me to lift heavy because of my neck... Some days I don't even want to get off the couch...I usually try a little bouncing on the rebounder, but somedays even that is tough.

I've been doing pretty well at walking for at least 20 minutes on the treadmill at work every day at lunch, but there have been days when I can't even do that...or maybe only last for 10 or 15 minutes. Yep, it's different all right, lol.

[CarlaB]

Also, those of you who exercise do you find it is a totally different ballgame when chronic illness is present?

Yes. I lift weights and do the elliptical for cardio. I used to do about level 7 on the elliptical for 40 minutes. It was invigorating. The same day, I'd work out another 40 minutes with weights. I don't do the machines, I use free weights, as heavy as I can doing 3 sets of at least 8 with proper form (so not heavy enough to need a spotter, LOL). I use a couple machines, but not many.

When I was really ill earlier in the year, no cardio and lower weight. I needed Adam there to encourage me. I kept at it because I knew it was good for me to be working the muscle.

As I got better I could add in a little cardio, level 1 for 15 minutes, but only on good days. I never do cardio on days where stamina is a problem because I want all my energy to go towards healing. I don't push myself to do more like I did when I was healthy.

I've now worked up to 30 minutes on level 2 on the elliptical and the weights have become easier. I can go on my own ... I can even count the three sets ... when I was really sick, I could never remember what set I was on. I skip the cardio on bad days, or when energy is a problem ... so I do cardio about half the time.

When I herx, I skip the workout all together. I haven't gone at all this week.

An interesting thing is, when I lift weights, I've been doing it so long that I generally don't get sore muscles, except when I work out my back. When I herx, the exact same area of my back hurts in exactly the same way! I am thinking the exercise stirs up the bugs and the pain is actually a herx. I usually work out each upper body part once per week (legs twice per week, abs twice per week or more) ... I think I'll add more back exercise. DIE, BUGS, DIE!

In my opinion, exercise is critical in Lyme treatment. It gets oxygen to all the body parts ... it does't let the bugs rest in your muscles ... this is opinion based on my own experience through the years. Exercise has always been part of what's put my Lyme into remission.

[CarlaB]

Carla, I forgot to say thanks so much for the "fudge" recipe. It sounds really good, I want to try making it soon.

Your welcome! You'll love it ... it seems like such a treat, but it's SO good for you! The chocolate is loaded with antioxidants and the coconut oil is just so good for you in so many ways! Then a little protein from the almond butter. Trust me, it feels like you're eating something you shouldn't.

Also how is the herxing today? Is there anything you can do to calm it down a little? I was curious if the sauna helped, or anything that would draw out the toxins....

The herxing is still bad. It's not as bad as it was when I herxed back in Jan/Feb though. I was going to ramp up on my amoxy ... but when I added a little and it gave me fatigue but no pain, I decided to add it all at once ... why go through this twice is what I figure?!

I do things to draw out the toxins ... saunas and coffee enemas. Also I'm chelating, which helps. Plus the whey protein seems to help, too. I drink a lime squeezed in a cup of water. It all helps, but too much is being killed off to take it away completely.

Keep in mind, I chose this ... ... I'm in a position where I'd rather have a little pain to heal in less time. Thus, I added the meds faster than someone would who has a job. I do feel like it's making me get better quicker, but everyone can't do it this way. Everyone also doesn't focus on detox like I do (or all of us here do)... all this detox eats up a significant part of my day ... I sauna for an hour ... then the coffee, etc.

I could just cut back on the meds while herxing .... there are two opinions on this ... I feel like I should kill all the bugs I can ... I Rachel my meds!

I did go to Starbucks with Morgan about 1PM, but now I'm laying in bed resting again. It's not like I'm all locked up in my room ... I live in a 91 year old house and my room is the finished attic, so it's more like a suite ... in fact, if I put a kitchenette up here, I'd never need to go downstairs! So, I am all locked up in my room ... but if it was just a typical bedroom, I'd move downstairs.

My 11 year old daughter told me I "sounded" better today than yesterday.

Well we haven't discussed hard drugs, lol. At this point I'd be willing to try Ambien or something like that.

I'll tell you, I'm lovin' my Ambien!! I slept for 11 hours last night!!!! I woke up at 3, went right back to sleep, then again at 7:30 ... I thought I was up for the day, but within seconds I went back to sleep and didn't wake up till after 10.

Exercise is definitely a totally different thing when chronically ill. Before I got zapped in the last two years, I was doing some pretty intense cardio and was lifting fairly heavy weights (well, as heavy as I could go without a spotter).

Not only am I not capable of doing the intense stuff anymore, but my doctor actually doesn't want me to do it anyway now...he says it would put more stress on my already stressed body, adrenals, etc.

I just wanted to clarify what I said in my last post about exercise being essential ... if walking around the block or lifting three pound weights is all that can be done without getting worn out, then that's the best exercise ... I was there ... I just have moved back up as I've gotten better and I see that even a little effort has helped me along.

[Green12]

I do things to draw out the toxins ... saunas and coffee enemas. Also I'm chelating, which helps. Plus the whey protein seems to help, too. I drink a lime squeezed in a cup of water. It all helps, but too much is being killed off to take it away completely.

I Rachel my meds!

about Racheling the meds

So some pretty MAJOR detox going on.

Does herxing happen in a cycle or pattern?

Thanks for the feedback on exercise, Donna too. It was pretty much a no-brainer question, I mean of course exercise is going to be different when your body is compromised, lots of low energy times.

I was always an athlete until I got sick (15+ yrs ago), competitive swimming, running, high impact aerobics, skiing, etc. The most I've done since I've been sick is long walks and hikes on pretty easy terrain, and then more recently in the last few years yoga and pilates.

I am trying to train for a 5k coming up and I just find I don't have the stamina. I also don't think I build muscle and burn fat like one should when they are doing these activities . Also that whole "chronic fatigue syndrome" theory thing, the more you do the more you deplete your reserves and you don't seem to be able to replinish those reserves.

It's kind of frustrating .

Anybody do any foot soaks to draw out the toxins, skin brushing, castor oil packs, etc?

[CarlaB]

Does herxing happen in a cycle or pattern?

Fortunately, yes. Every 21 days I start a herx. They last about 3 days, then it takes about a week to recover completely. Then, until I hit day 21 again, I feel good ... last month I felt about 80%, the month before 70%. So, I'm seeing significant improvement after the herxes, which is why I tough it out rather than cut back on meds.

This time is a little different because my herx started when I increased a dose of medication, then I went right into my monthly herx, which was due today. So, this one has hit me particularly hard ... new meds/increase in meds always get to more bacteria.

Lately, I've been more functional during a herx, but this one has really knocked me down. That means the meds are working.

I am trying to train for a 5k coming up and I just find I don't have the stamina. I also don't think I build muscle and burn fat like one should when they are doing these activities . Also that whole "chronic fatigue syndrome" theory thing, the more you do the more you deplete your reserves and you don't seem to be able to replinish those reserves.

It's kind of frustrating .

Both Donna and I take NT Factor for fatigue. It's all natural, but only available full stregth from a doctor.

Anybody do any foot soaks to draw out the toxins, skin brushing, castor oil packs, etc?

I sporadically do skin brushing, but it just seems so strange ... I don't know if it does anything.

I forgot to mention I take Cholestyramine to absorb toxins.

[AndreaB]

Anybody do any foot soaks to draw out the toxins, skin brushing, castor oil packs, etc?

Bev does foot patches; Mia and Rachel have done or do castor oil packs.

Carla, Things should be better next week then right? Do these herxes usually last a week?

[CarlaB]

Carla, Things should be better next week then right? Do these herxes usually last a week?

It should be. Usually the hard part last about 3 days ... lately anyway, before they were more like a week.

Whenever I start a new med or increase doses, I herx until my next regular herx (which was due today)... so this one might be a little harder to pull out of since it's a harder herx ... but I would think I'll be doing better next week. Hopefully a lot better!!

[dlp252]

I also don't think I build muscle and burn fat like one should when they are doing these activities. Also that whole "chronic fatigue syndrome" theory thing, the more you do the more you deplete your reserves and you don't seem to be able to replinish those reserves.

...

Anybody do any foot soaks to draw out the toxins, skin brushing, castor oil packs, etc?

Yes, I have the same thought about fat and muscle. No matter how heavy I lift I can't seem to build muscle and I definitely have a layer of fat that I can't get rid of. It's frustrating, lol.

I haven't tried those specific things you mentioned for toxins, but I do epsom salt soaks and the bouncing on the rebounder to move things around. I tried dry skin brushing years ago in conjunction with a detox diet. Felt good but it was a whole process and I couldn't devote the time in the mornings to do it regularly--I think at the time I had to be at work at 5:00 am.

Both Donna and I take NT Factor for fatigue. It's all natural, but only available full stregth from a doctor.

Yes, and I do think it helped with the energy.

[CarlaB]

Yes, I have the same thought about fat and muscle. No matter how heavy I lift I can't seem to build muscle and I definitely have a layer of fat that I can't get rid of. It's frustrating, lol.

I was noticing the same thing. I looked atrophied or ematiated. I didn't lose the muscle I had, but it was like I was building muscle as fast as it was wasting away. I have that layer of fat, a bad fat, not like the fat you need to look like a woman instead of a man, if that makes sense.

I am starting to fill out again even though I haven't gained weight. I guess it's just a healthier distribution of the weight I have. I am noticing a difference in the way I look. I think that layer of bad fat is diminishing, too, but it's too early to tell.

[Rachel--24]

Julie,

This is an article I really like....it talks alot about the importance of detoxification.....it mentions the foot pads, saunas, coffee enemas and everything else which can be useful. I used to have a link directly to the article but it has since expired.

The first article on this page is the newest (August 2007) and titled "Focus on Detoxification Increases Likelihood of Full and Lasting Recovery".

Open Original Shared Link

I'm doing much of what is mentioned in this article for detox.

The author of these articles is Scott...I've mentioned him alot here. He's the first person to test me using ART....and he's one of the people I've learned alot from this past year.

All of these articles are very interesting but the one on detoxification is my favorite.

Hopefully you can view PDF's.....I cant but I'm able to pick up the newspapers and read them that way....or sometimes Donna emails me the text.

The Feb. 2007 article is an interview with one of my current Dr.'s. I started seeing her in March.