Omg...i Might Be On To Something

[Judyin Philly]

HI BEV...

I SEE YOU AND READ WHAT YOUR POSTED BUT I'LL KEEP IT ON THE DOWN LOW.

WHAT AM I CHOPPED LIVER?

I READ ALMOST EVERY 2 DAYS BUT DON'T POST

HUGS

J

[CarlaB]

thanks... I actually already got tested for co-infections, which came back negative...

Co-infections is also a clinical diagnosis. My babesia tests came back negative, yet I was diagnosed with it based on symptoms that are clearly babs. I'm sure your LLMD knows this, but it wouldn't hurt to familiarize yourself with some of the coinfections and their symptoms.

[DingoGirl]

Aww you guys..it's good to be back.... We need Susie Q....and Robbin too!

totally premature post - - -

hey, what is going on here, I pop in (at Andrea's lovely request!) and see that I"m being talked about???? HI EVERYBODY!!!! Always good to pop in to the GFPCF!!! (Gluten-Free Paradise Cult Farm) Waht is going on in here now, anyway? What's the latest? or should I say - - - WHO HAS WHAT?????? I am very punchy and tired todya, awoke this morning, drenched in sweat, from a dream in which I was studying very heavily for my FBI test, and then later, was at Maria Shriver's wedding parade....

Anywho, it was a long day at work and I am going to eat and head to bed SO early tonight.

Loving all these cute, old pictures!! Did everyone go out and buy a scanner, or what???? what do I do to scan my old things?

LOVE and purple glitter to all of you!!

[Rachel--24]

Rachel, I appreciate your opinion on Lyme/autism. It seems that most of these kids get autism after immunizations, so I definately would shy away from them if I thought my kid might have Lyme! I can't say I would avoid having kids altogether though, but it's a risk each person has to weigh for themselves. I think that just knowing that the kid might have Lyme is a huge help in their care. Plus, kids play outside and get ticks ... they could get it anyway.

Carla,

I've posted my thoughts about the Lyme/Autism lots of times. In no way do I think that Lyme *causes* Autism...nor do I think that vaccinations *cause* Autism. Its not just one thing causing it....its a combination of genetics, environmental triggers, heavy metals, etc.

Lyme is just one piece of the puzzle. I've read the link you posted before...I think I might have it bookmarked. You guys cant even imagine how long my my list of bookmarked links is!!

I'm never able to find stuff once I bookmark it...I think I need a better system.

Lyme and co-infections impair the bodies ability to detox. I just got back from my Dr. appt. and he was saying that he does believe Babesia is an issue for me. He said Babesia very much gets in the way of detoxification so it makes sense to him that its definately there....with the amount of toxicity I'm dealing with.

Of course it would never have been this bad if I hadnt been exposed to large amounts of mercury vapor while having these infections in my body.

I wasnt even food or chemical sensitive at all prior to that. I'm sure things were building up....but at that time I wasnt feeling it...I felt healthy.

This could be where Lyme is playing its role in Autism...by getting in the way of detoxification. So that once these vacs are administered...its too much. The vaccinations play a role but kids get Autism even without having Thimersol. Autism might be decreased without having the added mercury in the vaccinations but there are plenty of other toxins in vaccinations and in our environment which could also trigger it.

Getting rid of thimersol isnt going to completely prevent Autism from occurring. Its a major trigger...but definately not the *only* trigger. These are my opinions since there really isnt any scientific evidence to prove Lyme or mercury or anything else is causing Autism. It just seems pretty obvious to me that these two things are major players.

My concern with people who are very toxic from Lyme and/or heavy metals and getting pregnant isnt just based on Lyme...a single infection being present in the body that we can be aware of....treat... and all will be well.

If it were *just* that my life would no doubt be much easier.

I'm more concerned about what Lyme can *do* in conjunction with other toxic substances that can be accumulating in the body...because of impaired detoxification. Its not the bacteria itself which makes us sick...its the toxins it produces...and the toxins from other sources that accumulate when we have Lyme/co-infections/candida.

So yeah...if I were to become pregnant not only would the baby be exposed to Lyme...but also mercury and whatever else may be able to be passed in utero. I dont think I would want my baby to have this kind of start in life.

Of course kids can get bit by a tick just playing in the yard...but I would guess the effects can be far more devastating when a baby is being subjected to Lyme and other toxins and possibly already having stress on the organs crucial for detoxification....before even being born.

So yeah...the Dr.'s and Anna have told me no way for having kids...not until I'm detoxed and healthy again. I wouldnt try it anyway. I only plan on having kids if I'm able to regain my health. It would be way too hard to try and be the best parent I can be while I'm in this condition.

Also you have said that you were healthy when you had your kids...even if you had Lyme...you said you were in good health. That makes a difference. If you were in the state you're in now the outcome may have been different....thankfully...you ended up having a all these wonderful and healthy kids.

I think if I'd become pregnant in the years prior to the dental work...I would have had healthy babies. I wasnt feeling toxic at that time...even though Lyme was there. After the dental work I think the risk shot through the roof.....its just way too risky now. I dont even think I would be able to become pregnant or carry a baby full term at this point in time.

Its sad but its also reality. I dont try to fool myself on this.

I think everyone has the right to their own decisions but I also think it would be extremely risky and unwise for someone who is very sick with Lyme...newly diagnosed or even very sick and undiagnosed to go ahead and actively try to become pregnant.

I remember Anna told me that once you get well and the bacteria is under control...of course you still have Lyme which could be passed on but once your body is healthy..you can maintain treatment while pregnant while also supplementing to keep the baby healthy (lots of chlorella and such) and the baby can be even healthier than some babies who dont have Lyme exposure.

As much as I wanted to be a mom in my early 30's...I'm definately holding out for a time when the risk isnt so high.

EDIT:

Sorry about my Lyme/pregnancy rant...I just noticed the length of my post.

[Rachel--24]

Welcome to the club Charlie! You may wear a Lyme green baseball cap instead of the large floppy hats the rest of us wear to our lunch club.

Ummm...I think I protested about floppy hats.

Ok..well if I didnt...I am now!

I definately wanna be wearing a green baseball hat like Charlie. I would like to trade in my floppy hat now....I assure you its still brand new..never been worn.

[Rachel--24]

It's good to have you back! Now if we could just get Susan back, too.

Yeah...Susan...she must come back for a visit...her and the dingos. Rachelville just isnt the same without them.

[DingoGirl]

carla- It cracks me up that you notice all my avatars are outside. That's actually true....I'd live in a luxury yurt if I could (note: key word LUXURY- down comforter, fireplace, full kitchen!).

LUXURY YURT

Um, hi, Bev, it may interest you to know that I once dated - well, sort of hung out with - - - a guy who lived in a permanent and very luxurious redwood yurt that he built in Big Sur. It was FABULOUS!! But he was, um, kind of stinky. Really really super nice. More like a friend, actually, that I considered dating but really could not date. Um, every week he went "hiking" for 24 hours and was unreachable. Turns out he and his "business partner" were tending their marijuana crop in the Ventana wilderness. And then he would SELL the plants. Um, he was a yurt-dwelling drug dealer. That's right. Well anywho, the wild pigs ate all his weed that year. Strangely, he was probably the nicest man I knew the entire seven years (i.e. "The Lost Years" in Susan's dating life ) I lived in that debauched place.

OMG - - I'm goign to get kicked out of Rville just as soon as I'm back in........

I do miss the family-ness and pajama party that we have here!!!! But - - I don't have Lyme or anything else exotic - - in fact have never been healthier - - - okay - - a moment of scientifness here - - am going to post the latest results from my 14-month followup visit to GI:

Ferritin level at time of dx when I was tested was around TWO. At the six-month mark, it was 6, and now, fourteen months after initial dx, it is TWENTY-TWO. [Normal for my size is 25 to 200. ] Can you imagine how much better I"m feeling? Hemoglobin was around 7 - it's now up to 13. Blood cells were seriously shrivelled when I was diagnosed (is that hematocrit?) and they are now totally normal size. Tissue transglutaminase at time of dx was literally OFF THE CHARTS - - it was greater than 100 and they don't measure past 100. IT is now down to THREE!!!!!!!!!!!!!!!!

As you can see, I"m over the moon about these results. I really do feel physically great.

JUDY - - - - YOU CRAZY LADY - - they're not begging you back because you DO post in here, don't you?????? OF COURSE WE WANT YOU HERE YOU NUT!!!!!!!!!!!!!!!!

gotta go eat now.

[Rachel--24]

It has been a learning process for everyone and I'm so pleased with everyone's progress thus far.

Thanks for all of your support this past year Andrea.

Thanks for your encouragement and motherly henliness.

Okay, so I put up a picture of my little dog Chip (on my personal photo). Had to put her down about 2 or 3 years ago. Her owners turned her in to the vet to be put down but the vet thought she had some time left so I adopted her. Poor little thing was so sick, but so darned cute. I had her for two years and she had such a cute little personality.

Donna...what an adorable little dog!! Thats so great that you gave her 2 extra years. Chip was very cute.

Hi Donna- What's your Bumble Bar status? I miss Bumbles and peanut butter.

I fear what kind of effect the very mention of "Bumble Bars" might have on Donna.

I think I might have to drive to WF and clear the shelf of them....before she gets crazy. I wont actually buy them...I'll just sort of "misplace" them.

I saw a rheumatologist who evaluated me and said that he didn't think that I fit the clinical diagnosis of Lyme, but we shall see.

Hmmm....wonder what his criteria for clinical diagnosis is??

Maybe he was looking for a gigantic glaring bulls-eye.

Anyways...I remember when you saw the rheumy and he told you it wasnt Lyme.

I was disappointed that it steered you away from testing. Once I started learning about Lyme and posting stuff...I did really think you could have it....so yeah...I was hoping you'd get tested so you could either rule it out or start addressing it and recovering.

I seriously doubt any Dr. who is very knowledgeable about Lyme is gonna say you dont fit a clinical diagnosis.

Oh- yes, I will up load some very goofy pics in a bit. we'll start with childhood, progress to bad hair days, and prom pics.

YAY!!

My baby pics will be coming soon.....

I can only imagine what the bishop was thinking: Should I bless this mess?

ROFL..

[AndreaB]

Carla- Everyone says that! That I look exactly the same now as I did when I was little

Andrea- i have 2 horse ones you'll love!

Your face is still the same in your current picture.

I'll look forward to more horse photos.

Loving all these cute, old pictures!! Did everyone go out and buy a scanner, or what???? what do I do to scan my old things?

I guess we all have scanners. Another thing you might be able to do is take some photos to the kodak photo machine. I'm not sure if they create celiac disease's though. Then you could load them onto your computer.

I hope you'll come back more frequently again.

As far as updates.....

Rachel has metal toxicity, candida, lyme

Carla has lyme and co-infection

Laura has lyme and co-infection (I think)

Mia has lyme, still working through other testing

Donna has been tested for lyme and has metal toxicity and candida

Bev is going in for lyme testing

Charlie has lyme

Jin believes she has lyme and co-infections along with candida

Lisa has metal toxicity

Did I miss anyone.....I forget......Seems I must of...

[dlp252]

SusieQ - I had a scanner, which came with my printer when I bought my new computer last year...never used it though, lol. Now if I could only figure out how to hook up the fax part I'll be set.

Thanks for all of your support this past year Andrea.

Thanks for your encouragement and motherly henliness.

Ditto!

I fear what kind of effect the very mention of "Bumble Bars" might have on Donna.

I think I might have to drive to WF and clear the shelf of them....before she gets crazy. I wont actually buy them...I'll just sort of "misplace" them.

I think someone has beat you to it. I found them in three different parts of the store one day...they're already missing from one of them and the second one, well, they're gone from there too. FOrtunately they are still in the third place, but last week there weren't very many chocolate ones, which is why I bought 3. Still haven't opened them though... {{{she says smugly}}}

[Rachel--24]

Um, he was a yurt-dwelling drug dealer. That's right. Well anywho, the wild pigs ate all his weed that year. Strangely, he was probably the nicest man I knew the entire seven years (i.e. "The Lost Years" in Susan's dating life ) I lived in that debauched place.

LMAO

Now theres the Susan we all know and love!!

I do miss the family-ness and pajama party that we have here!!!! But - - I don't have Lyme or anything else exotic - - in fact have never been healthier

Ummm.....do people think you have to be totally Lyme infested to post here??

Nope..its still Rachelville...and anyone can participate..and as far as we know Andrea doesnt have Lyme.

We love your entertaining stories about yurt-dwelling druggies and weed eating pigs (Woah...I wonder if the pigs got the "munchies"...or if they just passed out from their binging ).

Yeah...we need breaks from scientificness....theres plenty of room for you and the dingos and some goofiness as well.

Tissue transglutaminase at time of dx was literally OFF THE CHARTS - - it was greater than 100 and they don't measure past 100. IT is now down to THREE!!!!!!!!!!!!!!!!

As you can see, I"m over the moon about these results. I really do feel physically great.

Wow Susan!! Thats really exciting...I'd be over the moon too.

You've come a long way....should be prouda yourself.

My "over the mooness" will come when I can start eating everything again.

JUDY - - - - YOU CRAZY LADY - - they're not begging you back because you DO post in here, don't you?????? OF COURSE WE WANT YOU HERE YOU NUT!!!!!!!!!!!!!!!!

What is this????

Judy...you know we love you ....and YES...we do want you here!!! Its nice when you visit...but its even nicer whaen you stay awhile.

[happygirl]

Andrea, I think the other 'unresolveds' are Judy and Patti....I think Patti's is at least more manageable with the diet, whereas Judy's is up in the air (is that somewhat, kinda, maybe, sorta correct)?

[Rachel--24]

Lymecentric!

I like that word.

Yup..I suppose we can be quite Lymecentric around here at times.

Donna...very cute avatar.

This is a premature post so sorry if you've answered but whos the little boy??

All the new pics are great!!

Bev and Patti....those are both really nice pics.

I always like black and whites for some reason. I change alot of my photos to b&w cuz they just have a whole different "feel" to them.

[Rachel--24]

Does anyone know what time Rachel's appointment is...I'm sort of excited about this one for some reason.

My appt. was at 4. I was excited about it too!!!

I havent posted about it yet because for some reason I'm sooo incredibly brain-fogged right now.

I've been pretty spacey all day...so yeah...I'm kind of having a hard time just posting regular stuff... let alone scientificness.

Heck...I dont even think I can remember anything that happened that long ago....its been like 4 hours now...much of it is lost in space.

I'm gonna post about it tomorrow...when I'm not feeling like those weed eating pigs must have felt.

[diamondheart]

Dear Claire,

You know how you were saying I might have a magnesium deficiency? Well, would you feel better on days you eat chocolate by any chance? I have noticed this. It does not make a lot of sense. I knew if anyone, you might know this.

I am sure you will be pregnant before you know it! Maybe acupuncture could help. There are many alternative therapies that help fertility. I have already planned to adopt because of my health situation. I would like twin girls from China. Mei-Li and Mai-Ahn. That will be their names.

Jin, I notice the chocolate craving more when I'm PMSing. If I take magnesium instead of eating chocolate, my craving for chocolate goes away. But of course, it's much more fun to eat chocolate .

I've been doing acupuncture for over a year and a half. I'd love to adopt, but DH won't go for it.

I think I'm pretty scared at the prospect of doing long-term treatment for Lyme because I was just about to start fertility testing and maybe treatment. I feel like if I get diagnosed then that is going to go out the window and I turn 40 in November.

Mtndog, welcome to the 40 and fertility challenged club! Yeah! Someone who can relate to what I'm going through! Well, I'm about to embark on IVF myself . I said to a friend of mine who is also going to do IVF that no woman in her right mind would do IVF. She replied that no woman in her right mind would raise children . I had to laugh at that!

Yah know, celiac can do a number on fertility too. I'm going to see a "birth intuitive" tomorrow. I'm curious what she will say. She already talked to me about celiac and mercury. I told her I don't eat gluten, so that's covered.

Getting myself well has to come first right now....but I have incentive...because I do want to have kids.

Ditto. That's been my whole incentive for this whole treatment thing I've been going through. Dr. F keeps asking me why I waited so long to get pregnant. I keep forgetting to give him the laundry list of health problems I've been trying to treat first, not to mention waiting till almost 39 to get married!

And who knows- maybe this is the cause of my infertility. I guess I'm MORE scared of the treatment than anything else!

I don't feel like I can wait any longer to get pregnant, before my fertility takes a nose dive off a cliff!

Loving all these cute, old pictures!! Did everyone go out and buy a scanner, or what???? what do I do to scan my old things?

My Dad scanned ALL of our old pics and sent them to us on celiac disease. So all I have to do is pop his celiac disease in and find some hilariously old photo of me. One of these days, I might actually put a picture up of the real me.

Did you just read that? Everytime I type in C_D, it substitutes it with celiac disease! What a weird board this is sometimes.

Claire

[Rachel--24]

I luckily love my dr.....and for me to say that is a huge, huge, huge accomplishment.

Laura...Its soooo great to read this!! I'm very happy you're comfortable with your Dr. It really is a great accomplishment.

It seems we're all pretty happy with our Dr.'s as we've been getting all the answers and getting on that road to regaining our health.

That in itself is definately a HUGE accomplishment for all of us. I think alot of us have been so discouraged and hurt by our previous Dr.'s.

I had so much anger towards Dr.'s before this past year. Alot of my earlier posts reflect all of that but now I feel free from it and yeah...I LOVE going to see my Dr.'s.

I so much look forward to it and never once have I left an appt. crying because of the way I was treated or because I'm afraid noone will ever take me seriously...let alone figure out whats wrong with me. It was such a bad time for me and I'm glad we're all moving forward!!!

I don't care what it is any of us have, but I just want us all to KNOW so we can deal with it. I thought I was the least likely Lyme patient...and then I met numerous people like me (food issues) at my doctor's.

Exactly....I just want everyone to know what they're dealing with and to have the right Dr.'s to treat it. I want all of us to be well again.

I actually did think I could have Lyme and I had requested testing for it a long time ago. They refused to test me but it all worked out because they wouldnt have used Igenix and they werent the right Dr.'s for me.

I only suspected it because of my love for camping and outdoorsey things. I didnt think of it causing the food issues or chemical sensitivity at all.....I was totally shocked that my Dr. wanted to test me for Lyme immediately....based on those symptoms. That was the biggest surprise to me.

Today is not a good day (I think I started a flare last night)....but I'll update everyone later. In general, though, I do have some good things to report.

Hope you feel better for the weekend...I cant wait to hear your update.

[Rachel--24]

Andrea--That was nice to say about the "family" being back together I never actually left, as you know, I just lurked and read along. I love all you guys we've been through a heck of a lot together!

I think of us as a family too....its really amazing how close I feel to everyone here. We truelly have been through alot together and we've really formed a strong bond. Its great....and yes...I'm glad to see everyone posting here again. I missed you guys.

[DingoGirl]

last pop-in before bed....

was goign to edit/erase part of my wacky posts because TOO MUCH goofball came out in those...and then I read THIS:

We love your entertaining stories about yurt-dwelling druggies and weed eating pigs

....and then this - -

I'm gonna post about it tomorrow...when I'm not feeling like those weed eating pigs must have felt.

and I just cracked up......and felt that I had to point out that I think they were Weed-Eating African Tweedle Pigs (right, Bev? )

anywho, BTW I am SO glad Bev has found her way back here! I think you really need it, girl. Lots of support here and you can get to the bottom of things, hopefully.

And, can I just say, that Laura looks like a freaking SUPER MODEL in taht photo? really gorgeous!

I have only scanned and read things briefly......must catch up later (catch up???? right...)

cannot......get.....sucked.......back.....into the vortex.....

[AndreaB]

OMG - - I'm goign to get kicked out of Rville just as soon as I'm back in........

I do miss the family-ness and pajama party that we have here!!!! But - - I don't have Lyme or anything else exotic - - in fact have never been healthier - - - okay - - a moment of scientifness here - - am going to post the latest results from my 14-month followup visit to GI:

You'll never get kicked out. We've missed you and hope you are back to stay. As Rachel said we dont' think I have lyme. I do think we have a minor/medium mercury problem which we are tackling with removal to start off with this fall.

Your test results......YIPPEE!!! You must be so excited!

Andrea, I think the other 'unresolveds' are Judy and Patti....I think Patti's is at least more manageable with the diet, whereas Judy's is up in the air (is that somewhat, kinda, maybe, sorta correct)?

Thanks Laura.

I still think Judy is battling lyme and or co-infections......just my opinion though mind you.

Patti......not so sure but I wouldn't mind her getting tested for lyme just to rule it out. It's a slim chance but it is a chance.

I'm gonna post about it tomorrow...when I'm not feeling like those weed eating pigs must have felt.

Hope you don't forget. You can post in snippets throughout the day if you remember something you forgot to mention though.

[AndreaB]

I have only scanned and read things briefly......must catch up later (catch up???? right...)

cannot......get.....sucked.......back.....into the vortex.....

Don't bother catching up, just jump back in. You can ask any questions you have.....no one will mind.

Don't stay away too long. As Rachel said, we love your stories and goofiness.....but we are also here for your seriousness and just thereitness. We love you all ways, not just funny ways.

[Rachel--24]

I still find it interesting that gluten seem to be the main first intolerance out there and then everything else pops up.

Andrea...I've read alot about this. Gluten intolerance is so common in this type of illness...and in Autism as well.

There is a ton of info which says that mercury disables the enzyme which breaks down gluten and also casein. After that it causes chronic imflammation of the gut....which leads to leaky gut...which leads to gliadin and casein leaking into the bloodstream....which leads to an immune response.

I'm sure other neurotoxins...including Lyme can also inhibit enzyme function. Mercury is the most studied....and especially with regards to Autism.

I posted some good articles about this before but I'm much too brain-fogged to find them right now.

Heres some stuff....not as easy to read...but still basically the same point.

A direct mechinism involving mercury

[Rachel--24]

I'm thinking it may have been the few slices of banana she tried yesteday. I just don't know if it's capable of causing the intense pain she had. She could barely walk because of it. She has a very low pain threshhold.

Awww...poor T.

I hope shes feeling alot better today.

Stupid banana.

[Rachel--24]

I still don't know how Rachel can keep so much straight with all the brain fog.

Ummm...she cant.

[Rachel--24]

This is me and my boyfriend Timmy, lol.

Awww...mystery solved.

How cute.

Cant wait to see the wedding pics.

[Rachel--24]

Co-infections is also a clinical diagnosis. My babesia tests came back negative, yet I was diagnosed with it based on symptoms that are clearly babs. I'm sure your LLMD knows this, but it wouldn't hurt to familiarize yourself with some of the coinfections and their symptoms.

Yup...my coinfections test was negative but ART reveals Babesia.

I asked my Doc tonight what he thought about ART.

He said he always prefers to actually *see* something definate...he prefers clinical laboratory results but because of the nature of these diseases its just not always possible. He does value these other more alternative methods of testing.....which may pick up what cant be found in the blood.

We discussed Babesia in particular....I told him even though my bloodwork was neg. I could have a different strain than what was tested.

He agreed....there are 20 strains of Babesia and we're only able to test for 2 of those strains. So yeah...that leaves 18 strains not even available for blood testing. He said from a clinical standpoint he feels I have Babesia....but its nice to have it confirmed with stuff like ART and BioSET.