Omg...i Might Be On To Something

[happygirl]

see, then when you add my double testing to the mix, its way too much work

thanks for posting everyones, and good that you got the results back, Carla, for chloe.

[AndreaB]

Laura,

It's not a lot of work. Just really hard to read when you do both of them.

I don't know the signifigance between IgG and IgM. To me, they both need to come down to get better (but I'm not an LLMD and don't know what I'm talking about).

I combined the positive and IND's to make for easier reading.

[dlp252]

Thanks Andrea and Carla!!!!!! Got it. I'll just keep a running spreadsheet and once I get it all together can send it to anyone who wants to see.

Wow - out there doing stuff - imagine that!.

(Imagining and knowing the day will come)

For all of us!!

You don't know us very well. I suspect we would all unlock the window, in fact I am pretty sure it would be Beverly first, yoohoo Bev.

I don't know...me thinks there might be a struggle to see who could get there first.

Anyway, I thought I was doing fine by just reading the labels and never suspected that any of the products were causing anything. They never entered my mind

So the other day, I emailed them asking for a list of their products that contained gluten. I was just thinking that I'd like to try some of their bath products and thought that with a list, it would be easier to order.

Imagine my surprise (and horror) to see the very sunscreen product that I HAVE BEEN SLATHERING ON MY FACE FOR WEEKS as the first one listed in the "contains wheat" column.....

...

Interestingly enough, although I have had D almost daily, the worst has been the palpitations and the anxiety. The lightheadedness and the reflux is also back, so I'm hoping that this has been the culprit all along here.

Oh Patti...I don't give much thought to my products either, but it certainly COULD be causing some of my symptoms to be worse.

Love the spice name under the photo...very applicable in your case.

I'm okay with it. Everyone has their life difficulties, and Chloe has the advantage of knowing what hers is. Her past couple years has been tough with schooling and I have hope that this will make things better for her. She's not sick like some of us, so it should be easier on her if she does require ongoing treatment.

I think you've got a good take on it!

I hope everyone else is doing as well as possible today. I'm still doing a bit better the last two days, though my diarrhea is back, but not as bad as it was before. I haven't taken any imodium since Monday, which is a pretty big step for me. I'm just taking things one step at a time now.

Glad you are doing better! Sometime all we have is one step.

[AndreaB]

Ok--I think I know why I've been sick the past month or so with gluten-like symptoms.....I started using Philosophy skin care in April--love it

Anyway, I thought I was doing fine by just reading the labels and never suspected that any of the products were causing anything. They never entered my mind

Don't you love it when they don't use plain english on those labels?

Glad you found out though.

[tom]

You don't know us very well. I suspect we would all unlock the window, in fact I am pretty sure it would be Beverly first, yoohoo Bev.

My bad - I hope there are enough windows to go around!!

[CarlaB]

Okay, I'm confused ... I was hoping a latte and a workout would clear my mind ...

Nurse at LLMD says Chloe's test shows exposure, that we need to put her on a month of antibiotics to see what happens, that we don't know if it's a problem for her ... that the way Lyme testing is, if we had taken the blood on a day her elbow hurt and she had a headache, that it could have been a clear positive.

I understand that abx can stir things up and yield a positive test.

I thought that if you had a Lyme specific band and had never been treated for it that you had it.

Do you think the nurse is being non-committal because of all the persecution of LLMD's? Or do you think it's really up in the air as she is suggesting?

[CarlaB]

My bad - I hope there are enough windows to go around!!

If we have said get-together at my house, I don't think you'll have any trouble getting in ... it's a 90 year old house and one of the side doors has a lock that requires a skeleton key. I wish we had that key ... sure would be funny to have it on my keychain! LOL

I might go to the antique store down the street and see if I can borrow his keys to see if any are a fit.

Anyway, tom, I'm sure you could pick the lock.

[dlp252]

It's not a lot of work. Just really hard to read when you do both of them.

I don't know the signifigance between IgG and IgM. To me, they both need to come down to get better (but I'm not an LLMD and don't know what I'm talking about).

I combined the positive and IND's to make for easier reading.

It's not hard to do...I kind of want to keep this list because I can hardly remember (well can't actually) what my own test was, and I often want to look at someone else's too. This way anytime someone posts their results I can just add it on. My brain cannot compute the way this board smushes everything. Hitting reply does help space it out though.

I've already got Chloe added.

Okay, I'm confused ... I was hoping a latte and a workout would clear my mind ...

Nurse at LLMD says Chloe's test shows exposure, that we need to put her on a month of antibiotics to see what happens, that we don't know if it's a problem for her ... that the way Lyme testing is, if we had taken the blood on a day her elbow hurt and she had a headache, that it could have been a clear positive.

I understand that abx can stir things up and yield a positive test.

I thought that if you had a Lyme specific band and had never been treated for it that you had it.

Do you think the nurse is being non-committal because of all the persecution of LLMD's? Or do you think it's really up in the air as she is suggesting?

Hum, probably non-committal, but maybe not only cuz of the persecution... she may just not want to say too much before you talk to the doctor. I do think they may be more cautious when children are involved though.

I with ya though...I'm confused on the "if we had taken the blood on a day..." thing... Really? Can blood antibodies fluctuate on a daily basis without antibiotic intervention? Wow.

[CarlaB]

I think the antibodies can fluctuate like that ... when you have more active symptoms.

This is the nurse practitioner ... we probably won't see the LLMD till Sept. unless he sits in on our call Tuesday. He will look over the paperwork, but this nurse is who I work with. So, she wouldn't be brushing me off making me wait ... that's why she called me herself rather than having a "regular" nurse call.

I was just wondering if it really is "up in the air" like this ... do they need more specific results to CYA in case they're brought before the medical board, or is it really that inconclusive?

[Rachel--24]

I'm interested in the homeopathic stuff...I'm taking a detox thing for bacteria (Detoxosode), which Scott STILL says is really helping me, so I continue to take it...but would like to get rid of molds too. I think they have one for molds...maybe I should ask Anna about it.

Anna has me on a few different homeopathics. One for allergies, one for liver detox, one for lymphatic drainage....I'm also taking a Detoxosode (not for bacteria though....mine is for fungi and yeasts).

The new one thats she's excited about is for molds...this is the one she had me start on last night. I'm sure you could ask her about this one...she just started using it.

I can see why Anna is a bit concerned though...from what I read, the LED is just like any other detox thing...too much might be rough indeed. BUT, the difference that I understood from that article is that they can control it better. There are ways that I think they can control it or test it...I'm sure Amy will take that into consideration.

We talked about all this at my appt. last Sunday and it really comes down to who's doing the treatments. She said anyone can do the laser treatments but not everyone knows how to pull someone out of a crisis situation (if something like that were to happen). Its not something you wanna just go into "blindly". Especially someone like me whos really sensitive, problems with the pathways....and very toxic from the heavy metals.

I'm anxious to hear what Amy finds out when she runs the test.

Yes, I noticed that too, and there doesn't seem to be a lot of negativity either...usually people pop up on the "alternative" types of threads who try to nay-say it, but I haven't notice a lot of that with LED. I'm so very interested in it and hope that Anna some day decides to branch out.

There is so much negativity coming from some people on that board. I was reading a new thread where people were attacking Scott and Gigi.....basically saying they're "promoting" ART, Klinghardt, etc....for their own personal gain.

Asking Scott personal questions about his ART sessions and how much he gains by doing this. Its really irritating to read alot of posts over there. You and I both know that all he's gaining out of this is alot of knowledge and experience.

Also...Scott has made remarkable improvements in just 2 years. In 2005 he was in really bad shape from what he told me....now he's about 85% , working full time and doing all this other stuff on the side. Gigi is completelty healed...100%.

Thats what I look at....I look at the results.

The "nay-sayers" who come on there criticizing should pay more attention to the fact that people are improving using these methods. Heck...if you're not interested...why bother even jumping into these threads and spreading negativity around??

Its so irritating to me to see Scott having to defend himself in that way when he gives so much of himself to help others.

Ohh.. Anna is already familiar with laser detox...we talked about it before and she didnt seem all that "gung-ho" about it.

However, the LED that Dr. L.C. is doing is alot more targeted at specific toxins and definately more "involved". I'm not sure if Anna relized this when I talked to her about it.

I'm thinking she'll be hearing alot more about it from Scott and from Dr. Amy. If its working for people Anna might become more interested in it. Right now its hard to know how beneficial it is since it seems like not very many people have actually done it.

[AndreaB]

I don't know Carla. They know she was exposed through you and possibly your old house (before move).

Maybe they'll do the 1 month run and then want to test again.

[dlp252]

Oh Okay...I like [PAs][ooops editing to see that it was a nurse practitioner, which in my book is similar to a PA, lol]...they are quite good. I was thinking it was "just" (not saying that negatively) a nurse...like the ones who take blood pressure and stuff. They are knowledgeable but won't really tell you much.

I don't know...I feel sort of up in the air too. My doctor alluded to treatment down the road, but he really never said anything about antibiotics except that he was horrified at my antibiotic history and was afraid of giving them to me. I see him on the 26th so maybe he'll talk more about that then.

[dlp252]

There is so much negativity coming from some people on that board. I was reading a new thread where people were attacking Scott and Gigi.....basically saying they're "promoting" ART, Klinghardt, etc....for their own personal gain.

I read one thread like that...I wanted to reply SOOOOOO very badly that he was DEFINITELY NOT in it for financial gain, but he had already replied to it, so I thought it best not to. It makes me so very sad when I see him and others attacked. He is just the nicest guy...he's alway gentlemanly about his replies on the board too...I don't think I could be as nice.

[Rachel--24]

Okay, here are the details ...

IgM -

34 IND

66 +

IgG

41 +

58 +

Nurse said that we'll do a 30 day round of antibiotics and see what happens. Our phone consult will be next week to cover the specifics.

Carla...I'm thinking a 30 day round of antibiotics might change the results of the test and its entirely possible more positives will show up. I agree that a trial of antibiotics should be helpful in figuring out if Lymes a problem for her.

I'm curious as to which band they are calling "Lyme specific"??

I had all those same bands...plus a couple more. My understanding was that 41, 58 and 66 were not lyme specific bands (cross-reactivity).....but the 34 is definately specific. Like hers my 34 was IND.

Since I had all those bands I'm curious to which they are calling "specific"...41 can be from any bacteria with a flagella. I thought both 58 and 66 could be cross-reactive with other bacteria as well??

Did they say which band??

Donna--I put my spice name under my avatar, too!

Patti...how cute.

I dont know if I could put up my spice name cuz I just dont think I could decide which Spice name to use??

Ok--I think I know why I've been sick the past month or so with gluten-like symptoms.....I started using Philosophy skin care in April--love it

Patti....at least you figured it out and maybe now some things will improve!!

I'm keeping my fingers crossed.

Pajama Party would definitely be TOOO FUN!!! I have fuzzy slippers to share.

YAY....pajama party talk gets me all nostalgic about the first pages of this thread.

Hey everyone...help me, lol. I'm making a spreadsheet of everyone's Igenix results with IgG and IgM separated...I have Bev, and both of Laura's and of course mine and now Chloe's...

Donna...I got my results in October. Just look for when the OMG thread turned "Lymecentric".....and many Rachelvillians vanished.

If you cant find it let me know and I'll repost my results.

I haven't taken any imodium since Monday, which is a pretty big step for me. I'm just taking things one step at a time now.

Julie....any improvement is significant.

Congrats on not needing the imodium. One step at a time is the best way to go about it....hope things continue to improve for you in the weeks to come.

[Rachel--24]

I thought that if you had a Lyme specific band and had never been treated for it that you had it.

Carla...I dont see a positive Lyme specific band. The 34 is Lyme specific but hers is indeterminate.

[Rachel--24]

Do you think the nurse is being non-committal because of all the persecution of LLMD's? Or do you think it's really up in the air as she is suggesting?

I think its up in the air. The antibiotics might change that though.

[Rachel--24]

Can blood antibodies fluctuate on a daily basis without antibiotic intervention? Wow.

Donna....they really can flucuate. Think about gluten...when there is exposure you get antibodies...then they diminsh with no gluten in the diet.

Lyme changes form....goes in and out of hiding...there are constant changes in the body. For menstruating women Lyme tests are more accurrate at the time of menses. Lots of factors to consider. Most definately those antibodies fluctuate from day to day.

[NoGluGirl]

Dear Carla,

I do not mind helping out around the house. It is just my parents complain about how bad things look, but do not want to do anything to fix it! It drives me crazy everything being so messy. You cannot find anything. When you do feel like doing something, it would be a lot easier to get it done if you knew where everything was that you needed to do it was. By the time you find it, you do not have the energy to get it done!

It looks like Chloe is going to need treatment. That is good that they caught this now. It could be a lot worse! I know how hard it is to deal with the teachers and schools. My mother had to deal with that because my older brother is mildly handicapped. In Indiana, the schools really just do not care! I hope it is better in Ohio.

Dear tom,

I am like you. I prefer to err on the side of caution! Maybe you will not react to the soy lecithin. However, I would not want to try it either, I do not think. When you are feeling better, you do not want to do anything to ruin it. Meanwhile, your progress is wonderful! We would love to have a jam session with you and your sax!

Dear Donna,

What is that machine called again? I keep wanting to call it a sound purifier. That does not sound right, though. I would not mind having one. The noise bothers me. I do not sleep well because of the phone ringing and other things some days.

Dear Patti,

I am sorry to hear that your beauty products were making you ill! I have not worn make-up since going gluten-free. I am going to get some tomorrow. I know Maybelline and some others label clearly. I have to use foundation, concealer, and the whole mess!

Dear Patti and Donna,

I think it is cool you guys put your Spice Names under your pics! I need to do that, too! I am not sure how, though. I tried to put a caption on there before. It did not work.

Dear Rinne, Patti, and Donna,

You guys are not senior citizens! Youth is not a number! Youth is in the soul! All of your souls are vibrant! Remember that!

Dear Claire,

I will try to do a castor oil pack soon. I could use all of the help I could get. Maybe it will help me sleep better. My Thyroid is messed up, though. That does not help things.

We are pulling for you and your husband for the IVF! September is when you decided to go for it? I think everyone will be anxious to hear. That site on Eastern Medicine sounds interesting. I would like to check that out.

Dear Rinne,

That pajama party sounds fun! I have no idea how we could all get together, but it would be a blast! That would be awesome if Carla could have us all there. Cincinnati is a great town, too! Plus, we can have tom stuck on the outside with Triticus Toxicum!

Dear Rachel,

I hope you get to do the LED. I understand why Anna would be concerned. Dr. Amy is probably very cautious knowing your situation. We do not want another sauna and chlorella situation! That is best avoided!

Yes, we are the Bodacious Scat Sisters! Or, how about the Tenacious Tird Twins? This is too much fun!

Susie is loving this, I am sure! Speaking of, where has she been? Here we go with the scatology talk again!

You know how you were talking about the MMR vaccine? I had that done, too. Plus, Tetanus shots had thimersol when I last had one. Those all had mercury. I am getting nervous about that!

Dear Julie,

It is good to hear you have improved slightly. The D might not go away completely until you hit on something. That is what is so strange about illnesses. However, I am sure you will begin to feel a little better after you start more supplements. Patience is something you have to have with supplements. They take a little bit to work sometimes.

Dear Bev,

You and Laura very well could be twins separated at bite! Your results are so much alike! That is unreal! It is almost like you are the same person! I am glad you are feeling a bit better.

Dear Laura,

All those test results sure are difficult to keep straight! You were diagnosed before Bev. I think you got diagnosed last year sometime, right? Then you got diagnosed with coinfections this year? You tested positive for Ehrlichia as well as Babs, right?

Dear Lisa,

You and Mia sound similar. The mercury toxicity probably plays a role. Pain and all kinds of other things can be caused by that. There are so many terrible symptoms, people find it difficult to believe one thing can cause so much trouble.

Celiac is that way as well.

I was terribly underweight for a while as well. I got down to 84 pounds at one point. This was six years ago. I nearly passed out trying to walk I was so weak, and looked like an anorexic. At this time, I was purely terrified.

Dear Triticus Toxicum,

Welcome back! I do not think we have met. I joined the thread later on last year. I have heard good things about you! Remember, you cannot stray from here too long! If you do, you will miss a lot! We keep the keyboards busy!

Dear Mia,

I agree with your individual system approach. No one's body is exactly like another's. We all have different things we tolerate. Some people cannot eat soy, others just cannot handle gluten. Dairy is one more thing that varies. Lactose is the trouble for me, but casein is other people's trouble.

Supplements and food are a lot alike. Different bodies react differently to them. Rachel cannot tolerate Vitamin C. However, many of us can. Even when you have the same condition as others, your body may respond better to another form of treatment.

Dear Andrea,

How on Earth do you keep all of that straight? I do not have a clue what any of those numbers mean! You sure have things organized nicely! Reading these Western Blot results is like trying to read Sanskrit for me! Can anyone explain some of this?

Sincerely,

Jin

Dear

[jerseyangel]

Jin--

To add a line under your avatar, go to "My Controls", go to "Edit Profile Information", and then to "Custom Member Title"--then just put in what you want. Make sure you ammend it at the bottom

[AndreaB]

Patti,

Have you rescheduled yet?

Are you going to do the western blots along with the other tests? Please take Igenex paperwork in with you if you do.

[Mtndog]

Wow, that is huge. How are you?

I hope she can be treated with detox and supplements.

You don't know us very well. I suspect we would all unlock the window, in fact I am pretty sure it would be Beverly first, yoohoo Bev.

I just woke up from a three hour nap ("a three hour nap" she sings to the tune of Gilligan's Island) and i saw this in my email and burst out laughing. You know me far too well. And yes- I would want to be tickled and have a pillow fight (although not right now with current SMASHING headache!) :lol:

Carla- I'm sorry to hear about Morgan (I think- I mean, I know it will be hard on her) I hope after a month of antibiotics she'll be able to get by with supplements and detox. Hugs, Morgan!

Oh no...putting Spice names under avatars (how in heck am I going to in-bare-ass myself by putting Farts Like Machine Gun Spice under my wedding picture? I made a very BIG effort that day NOT to fart! )

Jin- I love Twins Seperated at Bite (that could be my spice name).

I was doing some research on infertility and Lyme yesterday and it was very encouraging. I found one article that said 50% of women who are diagnosed with Lyme complain of infertility.

Ahh...Susie is in self-imposed exile and out getting her hair done by Giorgio Armani so she will be even more gorgeous when she returns.

I am MAKING MYSELF go to WF now to do some shopping because we have nothing..nada..niente. I'd much rather curl up in fetal position and whine but good produce always cheers me up (oh-yeah- and there's the candle and body products section). And flowers. and candles. Uhmmmm....Ok gotta go before I lose motivation.........

[GRUMP 1]

Just wanted to say thank you to all that responded to my prescription problem. I was not able to get back to you because I went down hard for the last 3 days. I think partly because of the meds. I was on and partly because I over did it working on the boat my youngest son and I was rebuilding. I am now on a different prescription and have my fingers crossed that it will work better.

My youngest son ( 17 ) and I have been trying to get this boat done so we can all go fishing. But because of all my medical problems it has been a very slow process. We actually started on it last summer and are still not done. But we are getting close and hope to have it in the water in the next couple week. My wife has been saying maybe we should get some one else to help with it. But it has been such a close bonding thing for the 2 of us I just don't want to go there. We are real close any way, but we started it and I just feel like we should finish it. But hey maybe it is more for my benefit then it is his. Either way we have been having fun doing it and will have even more fun when we get to go fishing in it. Ok I am done rambling now and boring you all to death probably but just had to brag on him,

Hope you all have a GREAT day,

Grump

[CarlaB]

Carla...I dont see a positive Lyme specific band. The 34 is Lyme specific but hers is indeterminate.

She called 34 mildly positive.

Lyme changes form....goes in and out of hiding...there are constant changes in the body. For menstruating women Lyme tests are more accurrate at the time of menses. Lots of factors to consider. Most definately those antibodies fluctuate from day to day.

Yes, she said once Chloe starts menstruating that her antibodies could change entirely.

I just skimmed, this is a drive by.

[tom]

Ok I am done rambling now and boring you all to death probably but just had to brag on him,

Hope you all have a GREAT day,

Grump

Far from a bore Grumpster - it's a great read!

Keep 'em comin'!

Sorry about those 3 days. This place needs many more guy visits lest I get "only rooster in the henhouse" syndrome.

<ya, that's right! ORitHS!>

[dlp252]

Slow drive-by:

Help, went back, can't find my way out... SEND DINGOS!

Sheesh we were a talkative group back in October! Still haven't found Rachel's results.

However, I am finding some pretty funny stuff. Tomorrow I may do a snippet thing on a few of the things I saw.

Eyes blurry, gotta go. Practicing solo with group tonight.