Omg...i Might Be On To Something

[dlp252]

I am going to see about getting an endo and colonscopy. Im hoping i can find somewhere i can just do the pill cam, that way they can see every inch of my inside tract.

Don't freak out...the blood can come from a lot of different places. My colon was absolutely perfect, so the blood had to come from somewhere else. I agree that a colonoscopy and endoscopy might be a really good idea though.

I have no experience with the klebsiella (not yet anyway). Donna knows more about that.

I think Carla had it too.

Im wondering if i can eat cheese then, since this test was negative lol. I am dreaming, i know, cause of hte mold issue lol

...

I have been researching and im not sure if im learning more, or getting more scared by the moment,

Okay...put down the cheese and back away!!! You know, even if the test was negative, dairy and gluten are just hard for the body to process and if you're body is not working properly to begin with, eating things like that will just burden it further. Pssssttttt...that was my "motherly" advice meant with total love, lol!

If researching is causing more stress.....dont do it. You dont want to scare yourself. Dr. S. gave me that advice and it was good advice. Its good to research but not to the point where you're freaking yourself out.

Yes, I agree. When I first started researching my surgery it scared me silly, but at some point, the tide turned and it actually started calming me down. I'm the kind of person who likes to know EVERYTHING that might happen so I can be prepared for as many situations as I can...that helps calm me down, but if it doesn't work like that for you, DEFINITELY don't do it, lol.

[confused]

donna,

Oh should i say mother lol. I didnt eat any cheese, i figure it would only constipate me more anyway lol.

I actually feel calm this morning. I just got off the phone with the ND, and she is very nice. I ordered the two more test to check for the blood and i ordered an female hormone + thyroid test. Those will be sent on monday.

paula

who is turning the puter off til this afternoon, im going to go shop and maybe buy an puppy lol

[dlp252]

OMGosh Paula!!!!! SHOPPING AND PUPPY!!!!!! If you added FOOD, you'd have my PERFECT LIFE, lol!!!!!

[christine 25]

Lymie,

who made the subtilis? Where did it come from?

thnx

[littlelymie19]

I'm really not quite sure, I believe it's something that you'd have to get from your doctor, or an ND.

Everyone is so different though, so something that could help one person could do absolutely nothing for another, even if the two people have the same infection! I think an understanding of that is what's lacking in conventional Western medicine. Conventional doctors think that everyone with a specific "disease" or "syndrome" have the same symptoms, and if you stray from that, then you don't have it. They also seem to think that certain pills work for certain conditions, which may not be the same in every person's case. Every body differs drastically from the next, so we all require different things. That's why I value these doctors that Rachel and I have found, because they can actually create a protocol that is completely unique to you and what your body needs. I know I've said this, but I really wish that all of you guys, and anyone out there who's struggling with their health, had access to these sorts of doctors! I think all medicine should be this tailored and specific. Then people would actually get better, and the word "chronic" could disappear!

[aprilh]

Well im not sure when my iodine disappeared, but when i woke up at 6 am it was gone. I know it was still there but very light at 9 pm lol.

Well I finally figured out i dont have an leaky gut, i have an depressed siga, because i am in the normal range, just at the very lowest score spectrum. At least that is how im taking it. When i research this, it does make sense. It says i have a long time transient between bm's, which i have known for a long time. It says it happens due to stress, i have been under major stress lately. It says when you have an depressed siga, your body is an host for lots of bacteria, infections, parasites and yeast. I can have an higher suspectibility to mold. So this all makes sense to me.

I researched the occult blood and it says it can be from anemia or hemroids. I am extremely anemic, i have been for years, my body just doesnt like iron pills. So I am not fraking out on the blood, jsut yet. Maybe if the two test show something then ill completely freak out.

Some of my problems could come from my adrenals or thyroid, so I am ordering that test today, to see if i can get some more answers. SInce thyroid problems do run in my family.

I really think I am starting to get somewhere with my health. I know it is going to take lots of time to be "ME" again but im determined to get there.

Thanks for all your help on this board, i have no idea what i would do without any of you. SOme days i think i would be insane without all of you.

paula

What is siga?

Ask your ND about iodine supplementation - did she ask you to do the patch test?

Hang in there, Paula, I am sure that the ND will help work you through all of this.

Yes, I agree. When I first started researching my surgery it scared me silly, but at some point, the tide turned and it actually started calming me down. I'm the kind of person who likes to know EVERYTHING that might happen so I can be prepared for as many situations as I can...that helps calm me down, but if it doesn't work like that for you, DEFINITELY don't do it, lol.

This is me! To me, knowledge is power! But it doesn't work that way for everyone!

Conventional doctors think that everyone with a specific "disease" or "syndrome" have the same symptoms, and if you stray from that, then you don't have it. They also seem to think that certain pills work for certain conditions, which may not be the same in every person's case. Every body differs drastically from the next, so we all require different things. That's why I value these doctors that Rachel and I have found, because they can actually create a protocol that is completely unique to you and what your body needs. I know I've said this, but I really wish that all of you guys, and anyone out there who's struggling with their health, had access to these sorts of doctors! I think all medicine should be this tailored and specific. Then people would actually get better, and the word "chronic" could disappear!

I agree!! I wish there was a doc like that here!

[Rachel--24]

Everyone is so different though, so something that could help one person could do absolutely nothing for another, even if the two people have the same infection! I think an understanding of that is what's lacking in conventional Western medicine. Conventional doctors think that everyone with a specific "disease" or "syndrome" have the same symptoms, and if you stray from that, then you don't have it. They also seem to think that certain pills work for certain conditions, which may not be the same in every person's case. Every body differs drastically from the next, so we all require different things.

This is sooooo true!

It doesnt matter if you have the exact same condition.....people will respond very differently to the various treatment options.

I agree that conventional doctors never think "outside the box"....if its not in their textbook...then it doesnt exist. Every person is unique. I dont believe that a specific protocol will work for everyone...regardless of the type of disease being treated.

Dr. T. tested me for subtilus and it did not test well for me. (9x)

[Rachel--24]

What is siga?

SIgA = Secretory IgA

The three functions of the intestinal lining include absorption of nutrients, protection, and immune function.

1. Normally, nutrients and fluids are absorbed into and through the cells in the lining, and between them, through the tight cell junctions. These nutrients get into our blood and feed our cells of the entire body.

2. In some, the protective barrier is damaged and the junctions are wider than they should be. This causes molecules to get into the blood that are foreign to the body. These foreign substances such as food and microorganisms cause an immune reaction. In others, the intestinal cells allow molecules that are foreign to enter, as is the case with Celiac

[christine 25]

Right, diagnose and treat the individual, its not one size fits all. Thats what I'm learning in my health classes as well.

Sounds like something that an herbalist or Chinese medicine doctor might prepare in a tincture or something, hard to get, not mainstream.

I will say, I have noticed a few pattens observing the experiences of people on this thread, my mind tends to look for them.

So if something is reported to work for someone I take note. Thats all.

For me-

I just try things and go by how my body feels.

Trial and error I guess!

[Nanjkay]

Now for the extremly confusing aspect of the whole test

I test positve for gluten. I have been off gluten for almost 2 years (or so i thought)

paula

hey paula,

I have been able to be on the computer the past couple of days and I read what you wrote. In case no one else mentioned it, I was told that antibodies for gluten can show for years after you stop gluten. You produce the antibodies for a long time. Also, I read in some book I forgot which (by Shari Lieberman), that there is a protein in tomatoes that is similar to gluten and the body can confuse it with gluten and still produce the antibodies!!

I guess that especially applies when you first stop gluten and the system is oversensitized to it.

Nancy

[confused]

rachel,

Thnaks for posting that about siga, it was interesting.

nanjay,

Yep my nd said gluten antibodies can sometimes stay for a very long time. Which made me feel better cause i know i havent ingested any at all.

april,

I didn the iodine test cause rachel had talked about it lol. I talked to the nd three times today and forgot to ask her about the iodine test and what i should do. Im thinking I will try the test again and do it early enough in the morning that i can keep an eye on it better.

I was able to ask her about the leaky gut, since i had thought maybe i was just depressed and it wasnt leaky when i posted in here this morning. But nope i have leaky gut, she said my number was the lowest she has ever seen, lucky me.

paula

[mftnchn]

Thanks for posting about the S IgA, everyone. That is something I kind of skipped over in my Rosmed results (I didn't understand). Paula, my results are very poor as well.

In March it was 236 (range 500-1500); in July it was 44 (same range). I think SCD is helping so hopefully this is better now.

Sherry

[mftnchn]

I had the second scio yesterday and I still had some parasites but I am not tender in my intestines anymore. I had felt pain from gas moving inside for a couple of years. Back got much better, no more pain from bed except from lying in bed till ten on sunday. Yay. Lots of hormonal stuff going on and some stress. Machine said I was toxic. I do not know exaclty what. worked a lot n the back too , inflammation in three in c and piched nerves in t4 and lower down.

I can conclude it is good for inflammation etc. so far.

nora

So interesting, Nora. Is it a light treatment too?

Sherry

[mftnchn]

Lugol's on my palms and abdomen disappears in an hour, I guess that means I am plenty deficient??

Sherry

[Rachel--24]

Lugol's on my palms and abdomen disappears in an hour, I guess that means I am plenty deficient??

Sherry

Sherry your post just reminded me to check my iodine! Its totally gone ....I suspect it only lasted between 2-3 hours. Last time I checked it had been about 2 hours and it was fading...getting pretty light. After that I forgot to check on it.

I cant try it again for 4 days. Next time I'll have to put it right on my hand where its more visible since I tend to be forgetful.....my mind just wanders.

For this first test I just bought some cheap brand from work...it was like $1.25. I think it had alot of alcohol in it....it felt like I reacted a little. I'm going for the Lugol's now since I believe it contains distilled water rather than alcohol....is that right??

April, I looked at the Nascent Iodine but it's alcohol based so I figure Lugol's might be better for me.

Anyways...the iodine didnt last too long so I would say that I definately need it.

[nora-n]

the scio is not with light, just with bands around head and arms and legs, something with electricity and frequencies or something.

There are some places with the rainbow machine not so far away, just an hour, they use the light, but through the eyes. I heard it has been used for a long time for ADHD and allergies and stuff. Now someone on lymenet says it helps real fast with heavy metals, and it says so on the website too. I know I have mercury but I have never been tested for anything. Anyway, scio said I am "toxic" in english.

Open Original Shared Link

Open Original Shared Link

Now I would like to know what thing Dr. Woitzel is using to tell if it is lyme, and what is Bioset etc. and how did your practitioners and doctors test you. Like the dr. T who said Rachel did not test for any of the remedies andmedicines and supplements.

nora

[mftnchn]

Rachel, I am not sure. This was a prescription mixed up for my by the compounding pharmacy. I am supposed to use it twice a day for my hand condition but I have been pretty lax on it. Now I realize it is much more important than my hands.

Sherry

[confused]

rachel,

Will the enzymes that i ordered that you take work for the pancreas enzymes, or shoud li take the ones that she recommended. Im thinking they would work, but you know so much more then me lol.

Everyone,

I have been so tired the last few days. The only energy i have is to research and i did clean my living room, but now im ready to go back to bed lol. Im guessing its the leaky gut that has me so exhausted.

My son is detoxing. He was feeling really good until today, he is now so tired and his nose is running everywhere. I feel sorry for him.

paula

[littlelymie19]

Hi you guys,

From my first impression it seemed like you guys know a lot about detox...so I thought that you all might be good people to go to when I need some advice in that whole realm...

Since my methylation seems to have improved a *tiny* bit and I *might* be excreting metals, I'm worried about my digestive system, and how much it's not excreting. My very first symptom (ever since I was a child actually) was epically slow motility. On most days, I have absolutely no motility. Dr. P has gotten this to improve some, but it's nowhere near normal. When I do go, it's D so impaction isn't the problem...my intestines just aren't strong enough to carry out it's duty. I don't know if it's the nerves or what....but anyways...

I'm worried that all of the metals are being dumped into my digestive system, sitting there, then getting reabsorbed. I noticed about a week ago when I actually had 4 good days in a row (this is when my methylation was apparently working better, when I wasn't in my monthly herx) that I had a good bowel movement in size one day, and it was extremely extremely sticky. I thought that could be metals. But I haven't noticed anything since, especially now that my monthly herx began. I have a sneaky suspicion that I stopped methylating as well...

But ANYWAYS...my question is, should I be worried about the metals being reabsorbed? I'm going a little every day, but is that enough? How much is enough? I'm having a lot of GI pain as usual, but I wasn't when my methylation was better during those 4 days before this herx...

I was also wondering if the kidneys and bladder excrete metals, could I be dumping metals from that whole system? I'm really hoping that's the case, and that I'm peeing out metals rather than trying to excrete them by other means!

Okay anyways, that's enough rambling about gross bodily functions...

I'd appreciate any advice that you guys have Thanks so much!

[mftnchn]

Hi Littlelymie, I know with DMPS, most mercury is excreted in urine, some in stool. Sounds like mucous in your stool. I also have motility problems. GFSF helped some. SCD has helped a lot.

What helps me the most with detox is what is known around here as ecoffee. I do a c. enema after I go on my own. Other people with lyme disease also report it helps. Apparently it stimulates the release of bile (metals into the digestive tract) and glutathione (detox), then helps move things out (at least in the lower GI). My doc told me to do this along with a number of other detox measures, this one helps the most by far for me.

You mentioned a limited diet. What are you eating?

Sherry

[mslee]

Hi Guys!

Goodness!

Right now I'm only able to check in every couple days, sounds like everyone is making progress thats great news! So glad you are moving forward!

Don't have a whole lot of input...never heard of most of these treatments prior to finding this thread. It's very interesting ...thanks for the info, I'm trying to keep up and taking notes

Paula the endo and colonoscopy are not that bad, and very helpful to rule things out or find problems I would not have known of Celiac without it. I have mild colitis sulfasalazine seems to really help me, asacol is supposed to be better but is too spendy for me right now. My Grandpa had it too, Grandma said he took the medication got better and it never came back.

Seem to have found at least a safe enough diet to function, I still react to alot of foods but have had a few good days in a row...that's a start!

Are these Dr.s you guys see LLMD's, or???? I will be looking into alternative medicine but not sure which types to begin with. This one book.. What Your Dr May Not Tell You About Autoimmune Disorders by Stephen Edelson MD says to try to find a "Clinical Molecular Medicine Physician" anyone ever hear of that type of Dr???

Happy Saturday everyone, Hope you are having a nice weekend!

~a

[Rachel--24]

rachel,

Will the enzymes that i ordered that you take work for the pancreas enzymes, or shoud li take the ones that she recommended. Im thinking they would work, but you know so much more then me lol.

Those enzymes are specifically for digesting the proteins only....gluten and casein especially. You will need additional enzymes for other things....whatever she recommended would be different from what you're taking now.

But ANYWAYS...my question is, should I be worried about the metals being reabsorbed? I'm going a little every day, but is that enough? How much is enough? I'm having a lot of GI pain as usual, but I wasn't when my methylation was better during those 4 days before this herx...

I was also wondering if the kidneys and bladder excrete metals, could I be dumping metals from that whole system? I'm really hoping that's the case, and that I'm peeing out metals rather than trying to excrete them by other means!

Hi LittleLymie,

I'm pretty sure alot of metals are excreted via stool....so you definately dont want to be consitpated and trying to detox metals.

Have you ever been tested for things like chlorella, modifilan or activated charcoal....they can bind with the metals in the gut to help avoid redistribution. You have to be "going" though...because with these binders the metals are excreted primarily in the stool.

If you're dumping metals because of the improved methylation...then it can definately be redistributed if you cant excrete it.

I personally dont handle c. enemas very well.....but alot of people benefit from them. I havent had problems with constipation lately but in the past it has been a huge issue for me....so I can definately relate to your frusterations with that.

I agree that the stickiness is most likely from mucous. I've experienced alot of that from food intolerances in the past....but I'm sure that there are other reasons for it. I'm not sure if it would be from metals though.

I usually only go once a day (if I'm lucky) and I really think that for a person who's detoxing metals...it would probably be better to go more frequently than that. I know....its easier said than done. I struggle with this too.

[Rachel--24]

Are these Dr.s you guys see LLMD's, or????

Hi Mslee

Glad you've found a safe diet thats helping you.

Yes, all the doctors I've seen have been LLMD's.....well except for my "voodoo" doctors....who specialize more in the voodoo stuff.

The doctors I see are treating things like Lyme, heavy metal toxicity, autism, etc. I havent really chose any of them based on the fact that they are lyme literate....but more because they are knowledgeable about treating my condition.....which is all that really matters to me.

I wouldnt consider them "alternative" though....they are more integrative...more like a combination of western and eastern medicine.

[Rachel--24]

Andrea....I forgot to tell you....I couldnt get to Carla's myspace. The link was a "lameadvertisement".

Maybe if you email me the link it will work??

Anyways, I missed out on the pictures but I've been following the blog.

If anyone is following the Germany treatments and is interested in reading Scott's blog (he just left Friday) let me know and I'll send you the link.

[CarlaB]

Rachel, my blog is the same as Scott's but with my LN screen name at the beginning.

Myspace is with my LN screen name as well.

If my new doctor has a hard time opening things up maybe this will be my next step.

Anyway, S. is leaving for Germany tomorrow so you will meet him very soon.

This was the last post I read when I saw how much I missed, LOL.

I'm trying not to stay on the computer too long even though it's not wireless. We've also been very busy if you've seen myspace.

I'm feeling really good. I don't feel the burden of the Lyme anymore, but still feel there is healing to do. If I compare it to the flu ..... if a healthy person gets the flu, after the flu is gone they have a couple days of healing. Well, for me it's going to be more than a couple days! Plus, I think I still need to address coinfections.

Overall though, I'm feeling really good more consistently. Previously I would have to be on heavy abx to supress the Lyme this much, so this is excellent!

I met S last night! Nice guy. I told him I knew you, Rachel and he said you were a friend of his. I said that we knew each other for over two years but had never met.

I was sitting in the hall loading pics onto myspace when he got here .... I introduced myself as Carla and he shook my hand, but when I told him my LN screen name, I got a hug.

LITTLE!!!!! Welcome!!! I miss you! I'm so glad you started posting here, I knew you'd have a lot in common with Rachel.