Omg...i Might Be On To Something

[dlp252]

donna-

it wasen't filling the viasl that was the scary part for me it was the bill they gave me after!!!

now that did give me nightmares

[rinne]

donna-

it wasen't filling the viasl that was the scary part for me it was the bill they gave me after!!!

now that did give me nightmares

They took 19 vials of bloods from me.

Julie, I always enjoy your posts and appreciate how you catch up with everyone when you do.

I am wondering about Andrea. YooHoo.

[dlp252]

They took 19 vials of bloods from me.

Oh my word!!!! My blood pressure is so darned low to begin with...I think this might really do me in, lol! I think I'll ask they how many vials they intend to take BEFORE they begin....then I can have them knock me out first, lol...that way I'll already be down and won't have to embarass myself by passing out.

[miamia]

Oh my word!!!! My blood pressure is so darned low to begin with...I think this might really do me in, lol! I think I'll ask they how many vials they intend to take BEFORE they begin....then I can have them knock me out first, lol...that way I'll already be down and won't have to embarass myself by passing out.

oh i have really low blood pressure, and weigh nothing, and the 10 was at the 2nd lab . at the first one they just took 4 though

[dlp252]

oh i have really low blood pressure, and weigh nothing, and the 10 was at the 2nd lab . at the first one they just took 4 though

Okay, for all my joking around, this is truly mind boggling to me! Really, lol. I just can't wrap my mind around it.

[happygirl]

x

[CarlaB]

Well, I would hope he's the only contender since you knew you wanted to marry him when you were 12!!!!

[happygirl]

x

[rinne]

###

Untreated Celiac, as we see it defined, can be devastating, as devastating as Lyme I think. The question I have is whether Lyme is the trigger that stays on and burns out our adrenal system which then causes the cascade of health problems that people have. I read a stat, might have been posted by Rachel that said 10% of Lyme patients are Celiacs too.

Returning to the notion of Lyme as a stealth bacteria it seems to adapt itself uniquely to each person it attacks. It is often felt in old injuries first and it makes so much sense that the hip or knee you hurt is acting up and then that often goes away and other symptoms like pressure across the chest or heart pain and palpitations start up and they seem entirely unrelated to the hip pain. See how sneaky it is?

I think Lyme is just the tip of the proverbial iceberg. Have you heard of Morgellon's disease?

[Lymetoo]

Lyme can damage any body organ or body part it wants to. It has damaged my heart, my bladder, my lungs, my gallbladder, my female organs, my gut, my endocrine system, including adrenals and pituitary, not to mention the arthritis pain. I know I also have some brain damage, but don't like to admit to any of that!!!

The good news is that after 4+ yrs on antibiotics, I'm doing VERY well! So don't give up!!

[Rachel--24]

Have you heard of Morgellon's disease?

I've heard of it. Its some kind of horrendous disease that makes having Lyme seem like a picnic.

I've read a story of a guy who had it and he just couldnt deal anymore...he comitted suicide.

Another story had a better ending....this guy had Lyme too....he was saying the Lyme was nothing in comparison to the Morgellon's.

Morgellons makes you feel like insects are crawling on you....I guess there is alot of pain involved and a feeling of just going crazy. Also some type of "fibers" or other stuff will come out of their skin.

[Rachel--24]

Ok, lyme ladies. So when I learned about Celiac, I thought everyone in the world had it (because it is so underdiagnosed). But, is this much worse than that?

IMO...yeah....I think its much worse.

With gluten...I did the same thing....looked at everyone as if they had "it". Its easy to do because *everyone* eats gluten and most people have something going on with them...frequent colds, allergies, tummy aches, mood swings etc. Its really easy to look around and start thinking that everyone has Celiac. If someone has one episode of "D" and they just ate a plate of pasta....we'd all automatically think "Celiac!"

The reality is that most people *dont* have Celiac.

Gluten is one of the hardest things to digest. I think when things go wrong with the digestive system...gluten will be one of the first foods we'll become reactive to. Any food that doesnt digest well is going to cause problems. If you cant digest fats....you'll feel sick after eating a "fatty" meal. If you cant digest sugars...you'll get symptoms after you eat sweets.

Obviously Lyme can and DOES affect the digestive system....I'm sure it gets quite a bit of help from the yeastie beasties as well.

I think having Lyme increases ones chances of developing Celiac if they're carrying a gene.

Without a gene...if Lyme has caused digestive issues...gluten is bound to be a problem...but just one of MANY problems.

We're talking about 2 *highly* underdiagnosed conditions. How many people do you think are out there with a diagnosis for both of these diseases?? Probably not many....you'd be pretty lucky to get a definate diagnosis for just ONE of these....even though its possible to have both.

We see alot of people who've had mono ending up with Celiac....we dont see many here saying that their trigger was Lyme. My guess is that there are alot of Celiacs who also have Lyme but dont know it...and they will think of their ongoing symptoms as being Celiac-related.....and when they develop more and more autoimmune diseases...they will think its because of Celiac.

I think I've just been rambling and somewhere I got off topic.

Anyway....I think Lyme is more prevelant, harder to diagnose, more political, not as easily treated and just a whole lot scarier.

IMO its just as much a trigger for Celiac as mono is....just far less acknowleged or tested for.

What do you guys think??

You know how some Celiacs thrive on the diet and then there are others who go on accumulating conditions and diseases at an alarming rate....why do you think this is?? Usually they assume its because they were sick for so many years with Celiac that the damage just continues....regardless of how careful they are on the diet.

Maybe they were so sick for so many years because of something other than Celiac?? Diagnosing and treating the Celiac solved one problem but something like Lyme will just find more areas of the body to wreak havoc....hence the development of more symptoms and "conditions" like Fibro.

[happygirl]

x

[linds]

Donna:

both my mom and I were both suprised that they didn't do a stool test especially since my mom specifically asked them about parasites. The main reason we were worried about this is because all of my symptoms seemed to get bad after spending the summer with my boyfriend at his mom's house. The reason that being at her house made us think of this was because she lives even farther north right near canada and her property boarders a protected wilderness area. This alone isn't that weird but also they live so far out in the woods that there is no running water or electricity you you use lake water (unfiltered) for just about everything BUT drinking. There is clean water for drinking. but I could of possible gotten it for washing with it or from being in the lake everyday.

[AndreaB]

they brought their two dogs, so I had a love fest with them, lol.

Awwww, sounds like fun.

(well, we are wussies in California, it's probably 50 degrees and that is freezing to me, to go hiking )

Well, must figure out what to do wtih today. I am dreading work tomorrow..... in that crazy place that is more focused in making their paperwork OVERLY thorough and counting back change than making it a pleasant experience for customers. They are going to beat the personality out of me, I guess..... we will see.

Must be like Arizonians.....coats when it's in the 60's.

Don't let them get you down. You hang on to that personality of yours.

I am feeling much better now, I am back to feeling smart and smug.

Yeah!

lyme ladies...today was a bad day for me...couldn't even make it into work. actually had time to read up on lyme today. is it ok to be terrified?

Hang in there Laura. We are here for you too.

I'm feeling pretty tired today myself ... I had a little energy this morning, but all the activity is catching up with me.

Hope you got some rest and are feeling energetic again.

Ok, back to catch up......15 pages to go....

[CarlaB]

Welcome back, Andrea!! We missed you!

[Green12]

Welcome back Andrea!!!!!!! You were greatly missed

Rachel, very well said. To me when I think of celiac, there is an easy clear cut solution, a gluten free diet, and if the damage has been minimal then there is a great deal of potential for healing. Lyme, just seems like a whole other ball-game, and overwhelming.... the degree to which it has invaded the body and the damage that has set in, the coinfections, the partners in crime mercury and yeasts......

I came across a link about celiac the other day, must go hunt it down, but it actually had a category for people who don't heal on the diet, they called it unresponsive celiacs Kind of a lame cop out imo.

[AndreaB]

I must say, that is why I was supposed to go. I needed to hear that. I felt like I was being wrapped in a big hug.

It's hard not to worry about things but that verse puts it in perspective doesn't it? Glad you went and doubly glad you got a big hug from it.

Ladies, I am a Grandmother, a baby girl has appeared.

Congratulations!!!

Somewhere during the afternoon, I developed an earache sometimes when I swallow. I stayed outside for quite a long time yesterday trying to get the newest beagle to do her business outside, lol. I will be totally pissed off if I'm getting an ear infection, harumph! Last year, in October, I had to cancel a trip to Australia and Tahiti because of strep throat/ear infection/sinus infection. Grrr.

How are your ears Donna?

I know my health is not her top priority but I always go out of my way for her and I guess I thought it would go both ways or at least she would call me. Maybe I am being too sensitive because I feel so bad. I guess i am just sick of feeling this bad

I am sorry about the rant

Miamia

Don't apologize about the rant....that's what we are here for.

Ditto for what Rachel said below.

Thats too bad about your friend not being there for you.

Maybe she was busy with the holiday or something but still....she could have responded in a more caring and polite manner.

I would have been hurt by that too. Especially now that I seem to be overly sensitive...cry easily etc.

Ditto

ME-"are you mad at me?"

Mom- "Only when you ask me that"

This sounds like my daughter and me.

but-the good news is-with my 6 lbs weight gain i got my pd. back. our goal is to get weight on me, so even if i go through this again, i am not so malnourished and have some "time" so to speak before it gets this bad again.

Yay for the weight gain. Hope you continue on the uphill climb.

[dlp252]

Donna:

both my mom and I were both suprised that they didn't do a stool test especially since my mom specifically asked them about parasites. The main reason we were worried about this is because all of my symptoms seemed to get bad after spending the summer with my boyfriend at his mom's house. The reason that being at her house made us think of this was because she lives even farther north right near canada and her property boarders a protected wilderness area. This alone isn't that weird but also they live so far out in the woods that there is no running water or electricity you you use lake water (unfiltered) for just about everything BUT drinking. There is clean water for drinking. but I could of possible gotten it for washing with it or from being in the lake everyday.

The more I think about this the more stupified I am, lol. Definitely MAKE them do one...a complete one...I had to fill about 5-6 vials over 4 days, plus do a card.

How are your ears Donna?

YAY, Andrea is back!!! My ears seem to be better. Jaw is too...I am thinking they were related and it was because of the long dental appointment I had on the 15th. I have another one tomorrow, but it should be a short one, although not without pain. They don't numb you for the permanent crowns and last time it did hurt, lol. I don't remember my regular dentist hurting with the permanent crowns, but I think it was because my mouth was already on heightened alert from all the other dental work in such a short time.

Andrea, how are YOU doing?

[AndreaB]

No news on the Igenex testing, I tried to get the test kit ordered today but they are out of the office, I guess it is the weekend Will do first thing Monday morning. Then I have to figure out how I can get an MD to sign it.....

Someone mentioned that some Chiro's can sign for it. Have you checked that out?

It didnt start out that way but has improved greatly.

Glad you got the dust thing figured out. I don't have your sensitivities and I still have problems (sneezing etc) when the heat or the air is first turned on for the normal season duration.

Could it have gotten better because of taking so many stressors off of my immune system....getting my amalgams out, making diet changes, quit smoking, no alcohol, avoidance of chemicals...etc???

I would think these made a huge impact on how well you've done.

This girl could be my twin.

We've shared alot of the same symptoms, same experiences trying to get better and we THINK alike.

You guys all have your twins and now I found mine....the wild condor girl.

Glad you found your twin Rachel.

rachel, i'm reading all you are posting. keep it coming

i'll fill in for andrea, not that i could fill her shoes, but still, its a shot:

(in game show voice) #10,000 went to the fabulous jerseyangel, also known as Patti! Come on down!!!!!

You did better than I ever could have. Ok, I'll add watching posts to my job duties. I usually watch pages.....but stopped counting those around 500.

OMG--I am just so proud to have been the 10,000th post! I want to thank my mom, dad, my family here at home, my OMG thread friends, and the members of the academy! This is truly a great honor!

The more I read about Lyme, the more it sounds like what I have, but it just seems so unlikely...

The reason I thought of it with you is your sisters, for one.

The way they tested me to see exactly how dry my eyes were was to stick these little sheets of paper directly into my eyes...the papers would literally hang out of my eyes. Then I would have to sit like that for awhile. The papers would change colors depending on the moisture. It sucked and it was MOST unpleasant having those papers in my eyes.

OK...now I'm really anxious to hear what the BioSet lady comes up with.

That sounds painful on all counts.

I'm anxious for Donna to get tested too and seeing what the results are.

Donna, apparantly there is lots of Lyme here in CA.

There was a thread on the Lyme board asking if anyone in CA had Lyme and where they got it. I was pretty shocked but ALOT of people who responded were in the Bay Area.

What about Susan. Doesn't she live in any of those areas? Susan? Still wondering about you my friend.

I know I have said this before, I think I was bitten in the San Francisco Bay area 23 years ago.

Why was I thinking Colorado for you. Was that just your friends?

OMG......I *still* havent taken the time to ask Igenix about those titer results....my "positive" Lyme test. The one that came back like this 1:160.

but...1:one hundred sixty. This means that my Lyme test was VERY positive because anything over 1:80 is positive. So I am positive by twice the normal amount.

That's the way I read it.

[rinne]

Andrea, it is good to have you back, I look forward to hearing how your visit went.

As for the Colorado tick bite yes to nearly four years ago there but also yes to a bite and rash in San Francisco 23 years ago.

IMO...yeah....I think its much worse.

......

Anyway....I think Lyme is more prevelant, harder to diagnose, more political, not as easily treated and just a whole lot scarier.

IMO its just as much a trigger for Celiac as mono is....just far less acknowleged or tested for.

What do you guys think??

You know how some Celiacs thrive on the diet and then there are others who go on accumulating conditions and diseases at an alarming rate....why do you think this is?? Usually they assume its because they were sick for so many years with Celiac that the damage just continues....regardless of how careful they are on the diet.

Maybe they were so sick for so many years because of something other than Celiac?? Diagnosing and treating the Celiac solved one problem but something like Lyme will just find more areas of the body to wreak havoc....hence the development of more symptoms and "conditions" like Fibro.

I agree with you that the politics of Lyme make it much worse to deal with than Celiac but I think untreated Celiac can be devastating also. No doubt though, Lyme is worse.

But, as you pointed out Rachel, not as bad as Morgellon's, that is truly horrifying and the people who are suffering from it are even less likely to receive any help. I think we have to ask ourselves what can do do proactively to take care of ourselves so that we minimize further illness.

[AndreaB]

well, sillier than USUAL......

I got my statement from IGeneX today. I was all excited thinking it was my results already. How long did it take to get your results after your statement? I think it will be a while for me as this was mailed on the 21st and I rec'd it today, the 27th.

Don't forget the holiday slowed that up a bit too.

rinne:

I am not sure which lab did my lyme test. It was quite some time ago. I had it done because I was having joint pain. I live in rural northern minnesota and have at least 10 usually more tick bites a year its a hazzard of loving the outdoors in the north.

I would be highly suspicious. If you don't get some answers soon, maybe you could look into getting the testing done through Igenix. You need to have a doctor sign it though.

Most Lyme tests come back negative even when the person has Lyme...its because most Dr.'s dont use a qualified lab. Also Lyme is really really hard to diagnose....the bacteria has a way of "hiding" from the immune system so its really tricky and often hard to get a positive test.

Igenix is a lab that "specializes" in Lyme testing and they have the most accurate results. Its still not 100% but FAR better than any other lab. I was told by people online that any other lab is pretty much useless for getting accuratte results.....they miss almost all positive cases of Lyme. My Dr. told me the same thing and he only uses Igenix for Lyme testing.

Like I said...I never saw a tick on me...actually I'm not really familiar with ticks...if I saw one I just thought it was a "bug". I did alot of camping and outdoorsy things but I'm in California and I never heard much about ticks or Lyme Disease.

Anyways after 4 years of going from doctor to doctor and getting a million tests done...ONE Dr. finally thought I might have Lyme and ordered the Igenix test.

If you dont get any answers...its something to think about....given your frequent run-ins with ticks. Especially if you continue to get worse...it cant hurt to get tested from the right lab.

Agree here.

Speaking of mercury ... I take my temp. for NFP (natural family planning). This morning I was groggy and took it, then set the thermometer on my nightstand, but missed! It fell on the floor -- little balls of mercury EVERYWHERE! Rats. I have wood floors and it got in the cracks (it's a finished attic, so they're rough cut floor boards -- very old house). I had to vacuum it up, probably not the best method.

[happygirl]

x

[AndreaB]

I put the thermometer in a ziploc bag, and changed the vacuum cleaner bag and put the old one in the garage. Since we're not supposed to own them, I guess they don't need to worry about how to dispose of them! I guess I could have taken it to the dentist office to get rid of it -- then it no longer would be poison, it would be a safe metal!!

ok Ladies-

so today I had all my blood work done- I think I may still ahve one drop left in me. I had to go to 2 labs at the first one I just had to fill a few vials no big deal. But at the second lab I had to fill 10 vials!!!!!! But at least its done and I will have the results in one week for some but 2 weeks for the ones that I am really curious about- coinfections, etc.

I'm surprised you were able to walk out of there.

And Rhonda with 19!

I hear you. I'd go with Carla's suggestion and stick with meat, fish, vegies and fruit. I went through a period last winter where even the shells of the green peas were hard on me because anything with a shell is harder to digest. I peeled apples, I avoided salads, they really hurt to eat. I looked up an ulcer diet and sort of followed it. I thought that I had problems with the Tinkyada because of cross contamination but now I know that it is rice that is the problem. Keeping a food journal and eating very simply does help.

If you have the money to be tested I would follow up on a Lyme test through Igenex, it may not be Lyme but given their past suspicions and the problems you are now having there is that possibility. If you don't have the resources to do that right away going on an elimination diet may be the most helpful to get a handle on what you are sensitive to. The question is why now? Why these symptoms?

I was going to suggest going to the basic meat, veggie, fruit and adding back in rice/potatoes. Sounds like that wouldn't really be a problem since you don't eat them often.

Julie, I always enjoy your posts and appreciate how you catch up with everyone when you do.

I am wondering about Andrea. YooHoo.

I always enjoy Julie's posts too.

I'll write in a bit. Just got caught up and need to finish feeding Seth. Talitha fed him part of his lunch but doesn't like to finish.

Oh my word!!!! My blood pressure is so darned low to begin with...I think this might really do me in, lol! I think I'll ask they how many vials they intend to take BEFORE they begin....then I can have them knock me out first, lol...that way I'll already be down and won't have to embarass myself by passing out.

Andrea, I see you! Welcome back, my dear!

Welcome back, Andrea!! We missed you!

Welcome back Andrea!!!!!!! You were greatly missed

YAY, Andrea is back!!!

Andrea, it is good to have you back, I look forward to hearing how your visit went.

Yay, Andrea is back! So happy to have you back and look forward to hearing about your trip. xoxo

Thanks everyone! I missed all of you too.

As for the Colorado tick bite yes to nearly four years ago there but also yes to a bite and rash in San Francisco 23 years ago.

Ok, you've told me this before. Why can't I remember this? Sorry about you having to repeat.

[Rachel--24]

Donna:

both my mom and I were both suprised that they didn't do a stool test especially since my mom specifically asked them about parasites. The main reason we were worried about this is because all of my symptoms seemed to get bad after spending the summer with my boyfriend at his mom's house. The reason that being at her house made us think of this was because she lives even farther north right near canada and her property boarders a protected wilderness area. This alone isn't that weird but also they live so far out in the woods that there is no running water or electricity you you use lake water (unfiltered) for just about everything BUT drinking. There is clean water for drinking. but I could of possible gotten it for washing with it or from being in the lake everyday.

Linds,

I think getting checked for the parasites is a smart idea.

I'm still concerned alot about the whole being near the woods and having deer ticks all around and stuff like that...

Out of the 50 states your state (Minnesota) ranks in the top 10 for reported cases of Lyme Disease. The statistics I saw were for 1997-2003. Minnesota ranked high every year...especially 2002.

We all know that the "reported" numbers are FAR less than the actual numbers would be. I think I read somewhere that actual cases would be something like 10 times higher than whats reported.

The top 10 "Hot Spots" for Lyme Disease are...

New York

Connecticut

New Jersey

Pennsylvania

Massachusetts

Maryland

Rhode Island

Wisconsin

Minnesota

Delaware

This is just from what was reported so its not written in stone or anything.

Linds...here is a map of the risk areas in your state. Ticks can travel anywhere and they dont care about borders...so in my opinion your whole state would be medium or high risk. Lyme is spreading so it would be more prevelant now than it was even 3 years ago.

My state (California) ranks low....with no high risk areas.....yet there are tons of people getting Lyme Disease here in Ca.

Open Original Shared Link

For anyone interested heres a link to the map of the whole country and the statistics.

Open Original Shared Link

Welcome back Andrea!!

We missed you!