Omg...i Might Be On To Something

[happygirl 7]

x

[dlp252 5]

Yeah....she totally could have scheduled all of my appointments when I paid for them....she just didnt WANT to. Then tonight she told my mom on the phone that I should have just scheduled all of my appointments ahead of time....to AVOID this. I'm trying not to get overly upset.....trying to take miamia's example and put it all behind me...I think I'll have to sleep it off. The recptionist is young....she NEVER seems to wanna be bothered with anything. I should have pushed the issue about scheduling the appts. but instead I took her word for it that it wouldnt be a problem. Thats the LAST time I do that.

As far as the parking situation....I asked her if it was gonna be like this from here on out. She said no...its just because today is "Black Friday". I'm thinking parking is still gonna be difficult....maybe not like today but definately its gonna be more crowded then ususal. I'll probably have to deal with the same thing trying to make my appt. tomorrow.

I didnt expect that mall to be crowded like that....I would expect it to be heinous at Valley Fair....but not there. Guess I was wrong.

Oh well...when you get back from the cruise I'll give you an update on the parking situation.

That's a good idea...getting upset doesn't really do anything except make us feel worse! I hardly ever go to malls anymore aroud Thanksgiving/Christmas unless our group is singing at one, lol...just don't know what it's like. Two years ago, we sang at Oakridge mall late in the afternoon...I thought parking would thin out by then, but it was HEINOUS!!! We had to park across the street in an insurance company parking lot! Thanks for offering to be my parking lot correspondent!

Thanks for the update on Andrea by the way.

[dlp252 5]

Yay for Laura and eating more foods and gaining a bit of weight!

Hum, I am more emotional in some ways, but more emotionally dead in others. I tend to get upset a lot over little things more lately...not sad crying upset, I mean MAD. (Although I did cry at work when a co-worker teased me about something.) I spent the last two months in anger h*ll, lol. I do cry at commercials and stuff when I'm alone. I'll cry over a choir song I'm learning, or a thought that will come into my head. I DO think it's probably a good thing I live alone though because I could totally see it being really hard for that person, and I probably would cry more than I do! Sometimes I feel like I don't even have the energy to cry anymore. One thing is for sure though, I am not a good sick person...I am no joy to be around when I'm sick! And, I do think I tend to take things more personally when I'm not well...my reaction just varies from sad to anger and anywhere in between when that happens.

Julie-thanks for asking, I am sleeping better. Since I've been taking that second supplement (the valerian root), I've been waking up several times a night, but going back to sleep eventually each time.

[CarlaB 22]

Especially if I am not feeling well sarcasm of any kind is the last thing I need. I also feel like there is some truth to it and it really gets to me even if its obviosly meant to relieve tension it seems ot just cause more. (I hope that makes sense)

This makes perfect sense ... it's the same thing that bothers me! If it's not how they really feel, there wouldn't be the "material" for the "joke." I used to be able to laugh at my faults, too.

Laura, YAY on the weight gain!

Julie, I know Luke's dad is a hottie!! So, I guess Luke probably is, too. Thanks for the compliments. I cooked forever, too, but now have Morgan to help.

[rinne 3]

###

Laura, I'm so glad that you have gained back some weight.

Donna, I am glad to know that you are sleeping better. I have plenty of experience with not sleeping and have found it one of the hardest things to deal with.

I heard a great description of Lyme, it goes: It's like having a talking frog that only talks when you are alone in the room with it, you know it is true but try to prove it.

[dlp252 5]

I heard a great description of Lyme, it goes: It's like having a talking frog that only talks when you are alone in the room with it, you know it is true but try to prove it.

If that's what I've got, it's certainly true.

[rinne 3]

I know that frog talks to me all day long.

[Green12 2]

Hello girls

Just passing through and wanted to ask if there was a link, or source, of where to find LLMDs in every state? I did a quick search but didn't come up with anything specific.

I did however find this link:

http://www.wildcondor.com/lyme.html

I found it to be a fascinating personal story, I apologize if it has already been posted before.

Hope everyone has a great Saturday

[Green12 2]

Julie-

I have been thiking about you too. Any news with the igenix test.? Have you ordered it yet?

Hi miamia Hows your day going today, feeling any better? I usre am hoping so. 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.....

Laura, that's great on the weight gain. Woo hoo! Hope that stays steady for you

Patti, that tea sounds wonderful. I have to tell you I followed your suggestion and made my gravy with potato starch, it came out great!! I will never go back to rice flour again. Thanks for putting that tip out there Have fun putting up the Christmas decorations today. I just love this time of year

Donna, glad you have noticed slight improvements with your insomnia, hopefully that will continue to improve with time.

Rachel, there probably shouldn't be clouds, but for some reason there are. I guess I go back to the onion theory again here, you didn't get to this point over night, lots of complex, complicated things going on in you body and as you desesitize it's like working at peeling back one layer at a time, only to reveal a deeper layer underneath. If that even makes sense. Just hang in there Hope today is better for you and I look forward to hearing about your appt.

Does anyone else get reflective this time of year? I don't know what it is but every year at this time I deeply reflect on the state of my life, where I am, where I am not, where I want to be. I get super emotional too. There was a switch though for me, I just woke up today with a fire in my belly I just want to take my life back!!!!!!!!! I am so tired of being ill. Just thought I'd share.

[dlp252 5]

Just passing through and wanted to ask if there was a link, or source, of where to find LLMDs in every state? I did a quick search but didn't come up with anything specific.

I have one bookmarked at work, but not here unfortunately...it was from a link that Rinne posted a while back, so if no one has posted it Monday morning, I can from work.

Does anyone else get reflective this time of year? I don't know what it is but every year at this time I deeply reflect on the state of my life, where I am, where I am not, where I want to be. I get super emotional too. There was a switch though for me, I just woke up today with a fire in my belly I just want to take my life back!!!!!!!!! I am so tired of being ill. Just thought I'd share.

You go girl! I think we are all fighters here but I think we sometimes just forget to remember that. I do get reflective around this time...what reflected wasn't so pleasant this time, lol.

Hi Debbie, thanks for the chuckles, lol!

[rinne 3]

Julie, thanks for the link to Wild Condor, what an incredible story.

[happygirl 7]

x

[Rachel--24 7]

any opinions?

Yeah...I got some ....first I have to calm down enough to reply. I'm at home....spazing out....cant stop dancing.

Be back after this song and after I read the link.

[happygirl 7]

x

[Green12 2]

I'm at home....spazing out....cant stop dancing.

That has to be a good sign, I take it today is a better day?

Laura, I will read it and come back as well

[Rachel--24 7]

Laura....YES...I agree with what is written here. It goes back to the "onion layers" that Julie and I have talked about. What my Dentist had told me over 2 years ago....there would be no ONE reason for my illness. When I asked the BioSET lady if Lyme could have done all of this to me....her answer was NO.

My doctor said the same thing....immune dysfunction leads to a multitude of problems....they must ALL be addressed to become well again.

Q.Do you think chronic Lyme exists? A. Yes, I certainly do. As early as 1985 I diagnosed and treated an occasional patient with Lyme disease. Based on that experience, I am convinced that the Borrelia burgdorferi bacteria that cause Lyme disease can persist and cause chronic or recurrent symptoms. I also believe that chronic Lyme is the ringleader in many other illnesses, especially when symptoms of immune dysregulation exist.

I also agree that Lyme is the "ringleader". Because the bacteria is smart and evasive, because the doctors are ignorant, because the tests arent good enough....for all these reasons the bacteria is allowed to go undetected and untreated. It only makes sense that something that is this "stealthy" and dangerous is gonna cause the immune system to go haywire in some individuals. Its creating so many *other* secondary problems the immune system gets overwhelmed, overworked and probably downright confused.

I read somewhere that its almost like when someone becomes infected with Lyme....once it enters the body....it completely disappears....not showing up in tests....but yet wreaking HAVOC. This is evident in those individuals who have seen the tick....developed the rash and flulike symptoms....which then progressed into every classic symptom of Lyme Disease......but they test negative for Lyme.

From what I've learned during my time on this board and many other boards...I came to the conclusion that MANY of us are dealing with more than just ONE illness. If you vist the Lyme board you will notice that many are on a gluten-free diet, some have Celiac Disease....others have Fibro...thyroid disease is common on EVERY health board I visit.

Candida boards....these people are the most "lost" in my opinion. They are fighting a symptom of something that they are completely unaware of....and NONE of them get better. I would not be surprised if most of them had Lyme Disease. Candida overgrowth is occuring in these individuals because they have weak immune systems and immune dysfunction. Many of them discover they need to avoid wheat....some go completely gluten-free.

Gluten intolerance/Celiac is something I notice being discussed on every health board I visit. I dont think gluten intolerance is what is creating all of these health issues as Enterolab suggests. The proof is evident in the fact that if you've spent some time on this board you will notice that so many with gluten intolerance go on to continue having a multitude of symptoms. If the problem is truelly gluten.....then once the diet is implemented recovery should be set into motion. Instead the removal of gluten in some of us leads to the development of more and more *other* intolerances or dysfunction of other body systems.

Celiacs who recover completely from a gluten-free diet obviously arent dealing with other issues. The reoccurring theme I'm seeing on so many boards is that people focus on just ONE thing and blame EVERYTHING on that ONE thing. A Celiac who continues to develop more and more neurological symtoms or other conditions such as Fibro, CFS, etc....more than likely has *something* else going on. Alot of people think that gluten has caused all of this but I'm not really believing that anymore....I think they are missing something.

Celiac can be one diagnosis and we can be so relieved to get that answer and put everything into it.....expecting to have a complete turnaround....when in fact the Celiac is *only* present because of the immune response becoming triggered by an "unknown" infection.

I was in *perfect* health and now I have had autoimmune thyroid disease, gluten intolerance, multiple chemical sensitivities, candida, food intolerances.....all of these things are caused by immune dysfunction. What is behind it all??? I think THAT is the key question that alot of people dont ask themselves. I dont think our bodies just breakdown on us one day for no good reason.

I know I've said all this before but I just believe in it VERY strongly. I hate to see people who are sick spending all of their time on ONE diagnosis and not improving. I see it on the Lyme boards too....people *just* treating Lyme and not getting better. What about co-infections? What about *other* diseases that have developed due to immune dysfunction and stress on the body CAUSED by having Lyme?? What about Celiac Disease??

It seems like all of these things are related. Here on Celiac.com many people say their disease was triggered by Mono. If you visit the Lyme board many over there will say that Mono brought out their Lyme....making it progress much more rapidly....yes, that can happen but maybe at the same time another disease was triggered??

All I know is that the immune system is very complicated and Lyme seems to cause it to become very active and very confused as to what it is fighting. I believe Lyme is enemy #1.....but along the way other things become enemies as well....including gluten. Heavy metals is another thing that is proven to have a BIG role in all of this and in contributing or causing immune dysfunction as well.

In some ways I think I am lucky to have learned quite a bit about(in order) thyroid, mercury, candida, gluten, chemicals and other nasty stuff in food and THEN learn that I most likely have Lyme. I know I cant ignore any of these things if I want to regain my health. One diagnosis doesnt cancel out the others but I think finding the enemy #1 will put a stop to an ever-growing list of ailments.

Have you seen the huge lists of diagnoses in some of the signatures?? I have to wonder about this.

[miamia 0]

Julie-

This time of year does make me very reflective. Its rough I think for me because it makes me realize how long i have been sick- I don't think oh its september 5th I was sick last sept.5th but I do think oh its christmas I was sick last christmas- Does this make sense? It just seems to draw attention to how long I have been suffering from whatever illness I am suffering from.

I am happy to hear you are feeling better today.

I wish I could say I am feeling better but I had had some new foods on thanksgiving and they seemed to be ok so tonight I had the leftovers- apparently the other night was a fluke becasue I feel like I am dying right now !!

Rachel-

That whole thing you wrote was so on target - its amazing - how people accept a diagnosis given by a doctor and then even though they don't get better just accept it. Obviosly if they are still sick there is something they are not addressing. IF I just said ok I am gluten intolerant and lived that way that would be the same as me saying I am wiling to leave uncomfortable for the rest of my life.

[Rachel--24 7]

That has to be a good sign, I take it today is a better day?

It didnt start out that way but has improved greatly.

I have found out what was causing such distress and craziness the past week. Alot of my sensitivities trigger the same response, puffiness/swelling in my face, crying spells, swelling of the nasal passage, anger, depression and other lovely things that make me such a joy to be around.

It was from the heater starting to be used constantly....most likely from dust?? I had the same problem with the air conditioner in the summer....so my mom wasnt running it while I was home.

When I went to BioSET today (I had BioSET lady #2)....I brought it up. She said it was most likey from the dust. My moms gonna change the filter and turn off the vent in "my room". I had the same symptoms in my own house 2 weeks ago when I turned on the heater.

At my own house I've had the vent in my room shut off for like 3 years now....I noticed a problem way back then. I also have 2 of those air filter/purifier things in my room that I keep on.

The BioSET lady said that I'm gonna be treated for "inhalents"....but we're not there yet. They said I have about 9 treatments left. I think after that they will see what I'm still having problems with...recheck to see if the treatments "cleared" those things and I'll probably have to redo some. Thats my guess anyway.

I was worried about my chemical treatment last Tues....because I got home and had all that drama with my mom about paying bills. I was worried that my stress getting elevated may have affected the results of my treatment?? I asked the lady today...she said next week she will check to see if I cleared those chemicals or not.

I brought my thyroid meds today to see if I have any reaction to them....even though I've never noticed any. There was no reaction whatsoever. If there was a reaction she said they would have "cleared" it because I *need* to take those meds.

I also asked her about "clouds"...she said that alot of patients feel bad after they are treated because they are detoxing but it passes and then they feel better and notice improvements. I told her I'm not noticing it yet.

She said it could be in part because I'm not able to take supplements that would help me and because I have SO MANY sensitivities. I'm gonna just have to continue clearing more things because I still have more chemicals, all foods, food additives, molds, inhalents, etc. Heavy metals is gonna be last for me.

For most people heavy metals are addressed in the beginning but for me they had to adjust so that the more toxic things are at the end so that my body will be able to handle the treatment and the detox.

Last week we did everyday chemicals and I reacted to nearly ALL of them. In the first tray there were like 30 or 40 vials and I reacted to all but 3 of them. I had a really big and very FULL glass on my stomach for that treatment.

Today we did petroleum based chemicals. I didnt react to nearly as many. I reacted to everything having to do with jet fuel and alot having to do with car exhaust. I already know I react to car exhaust.....but jet fuel and exhaust??

How would I get around jet fuel.....is it just in the air??

Maybe my body just doesnt like it.....even if I dont get around it??

Anyway I had a full glass today but the glass was much smaller.

After we go through the chemicals they test the "bad" chemicals against my body systems to see which systems those chemicals are affecting. We do this with every treatment....no matter if its chemicals or foods or whatever the "bad" stuff may be.

Anyways, the systems that were directly affected by my reactions to those petroleum chemicals were my joints, my spleen, food allergies , and my hormones. If there were more....I dingo'd them.

Hormones seem to almost ALWAYS come up. I think *everything* is affecting my hormones. Could this be why I end up crying or depressed or angry?? Is that a hormone thing?

My mom went with me....she was allowed in the treatment room with me....she just wasnt allowed to touch me at all while I was in the room.

I dont have an appt. until next Saturday.

At least today I actually scheduled ALL my upcoming appointments.

I think they have scheduling problems these 2 weeks because BioSET lady #1 is out of town for the holidays.

I like her the best because she's the one who knows everything as far as Lyme and mercury and everything else. Shes very smart about this stuff. BioSET lady #2 doesnt know anything about Lyme or mercury. I cant gain any scientificness from her.

[Rachel--24 7]

I don't think oh its september 5th I was sick last sept.5th but I do think oh its christmas I was sick last christmas- Does this make sense? It just seems to draw attention to how long I have been suffering from whatever illness I am suffering from.

Mia...me too...thats exactly what I think of. I actually started getting pretty sick around the holidays 2002. So yeah...each year the holidays mark yet ANOTHER year of feeling crappy and each year I am more withdrawn from the festivities.

Also EVERY year....I think it will be my last year of feeling crappy. Hopefully this time its TRUE!!

IF I just said ok I am gluten intolerant and lived that way that would be the same as me saying I am wiling to leave uncomfortable for the rest of my life.

YUP...I never realized how much we think alike.

Sadly though....so many people DO accept one diagnosis and if they continue to never have good cognitive skills, or if they continue to develop more intolerances, or if they get more and more crippled with each passing year.....its ALL because of Celiac. Its because they were undiagnosed for too long or because maybe they were cc'd or whatever. I've read of people with Celiac who were undiagnosed for decades but once diagnosed.....they were FINE. If you continue to develop symptoms and more autoimmune diseases AFTER you've been gluten-free for years....how is this caused by Celiac??

[Rachel--24 7]

I had to go back

There was stuff I missed in the past couple days.

im actually not reacting horribly to *everything* anymore. i have started gaining weight back, although a little bit, it has made a huge difference.

YAY Laura....GREAT news!!!

6 Lbs. can make a BIG difference...I hope this trend continues. Also HOORAY for the pd. coming back.

I heard a great description of Lyme, it goes: It's like having a talking frog that only talks when you are alone in the room with it, you know it is true but try to prove it.

My frog talks to me constantly....he doesnt wait for me to be alone. Sometimes I wish he would. I think people close to me believe in the "talking frog" now.....mainly because of my out of character behavior and out of nowhere mood changes.

Once upon a time....I was *not* like this and I also NEVER cried. *Something* has got to be responsible for all this sensitiveness and wussiness....I was the LEAST sensitive person you'd ever meet before this happened.

Hey guys,

not been here for a while and lost the plot slightly but you guys sound as though you need to smile.

Debbie.....THANKS!!

I LOVED those!!!

I printed them....in case I need to smile again.

[miamia 0]

Mia...me too...thats exactly what I think of. I actually started getting pretty sick around the holidays 2002. So yeah...each year the holidays mark yet ANOTHER year of feeling crappy and each year I am more withdrawn from the festivities.

Also EVERY year....I think it will be my last year of feeling crappy. Hopefully this time its TRUE!!

YUP...I never realized how much we think alike.

Sadly though....so many people DO accept one diagnosis and if they continue to never have good cognitive skills, or if they continue to develop more intolerances, or if they get more and more crippled with each passing year.....its ALL because of Celiac. Its because they were undiagnosed for too long or because maybe they were cc'd or whatever. I've read of people with Celiac who were undiagnosed for decades but once diagnosed.....they were FINE. If you continue to develop symptoms and more autoimmune diseases AFTER you've been gluten-free for years....how is this caused by Celiac??

Rachel-

Same for me I got sick around New Years- Its not an anniversary that I like celebrating !

I have been completly baffled by the idea that once you cut out gluten you develop all these further intolerances- and all these further problems - How is this an accepted idea?

especially considering that a large population of celiacs cut out gluten and are fine. Obviously for them gluten was the problem and they took care of it. But for so many others it seems that cutting out gluten does not solve the problem or leads to more problems- does this make sense

[georgie 12]

Can anyone tell me if erratic temperature is an indicator for Lyme ? Hubbie has HypoThyroid, Adrenal issues but his temps are not normal. They can swing from 35.4 in the morning to 37.4 a few hours later. If its a hot day - he gets a fever. If its a cold day he gets chilled. I have been reading all his old blood tests and he hasn't even been tested for Lyme. He is in Aust now and not much is known about it here. He was from England.

Hope everyone had a Happy Thanksgiving.

[CarlaB 22]

Debbie, thank you for the jokes.

We must all be like Shrek ... onions, layers ...

[rinne 3]

Laura, I thought the article was good although the emphasis is on ABX for treatment. I appreciated his emphasis on detoxing and was impressed that he gets the importance of that.

Stephen Buhner pointed out that when people talk about herbal protocols for treating Lyme disease as experimental they miss the point that all treatment for Lyme disease is experimental. I just saw a post this evening from a woman who went the ABX route ten years ago and thought she was cured but has recently had a major relapse.

I think Lyme requires a revolution in our lives, a willingness to investigate everything and take responsibility for ourselves in a completely different way. I don't think there is one solution, it is more like finding one's self a novice lion tamer in a cage with a fierce lion, we know we have to take charge but in that moment it feels like the lion owns 90% of the cage. We must become lion tamers so that we own that 90%.

Rachel, thank you for the excellent scientificness, once again you put the pieces together in a way that is easy to comprehend. I agree with you, I think people do receive a diagnosis and then fit all their symptoms into that diagnosis. Just imagine though the experience of most people with doctors and the finality with which they are told they don't have Lyme even if it is suspected. How many people get their tests and study them?

[Rachel--24 7]

Julie thanks for posting the link to that amazing story!!

I'm posting it again for anyone who may have missed it..

http://www.wildcondor.com/lyme.html

I had read this girls story before....on a different site. She tells her story even better here! I recognized her picture and the mountain climbing stuff.

I'm alot like her in that I LOVE the outdoors...camping is my favorite but I'll be happy in any place where there is noone around and plenty of wildlife and nature to explore. The difference is that I never saw ticks on me. Its possible that I've had one on me and flicked it off....just thinking of it as a "bug".

Unless its a spider or a ladybug...I usually just consider it a "bug" and dont try to determine what "type" of bug it is....I just want it OFF of me. When I look at the pictures of ticks....I think they look like beetles....I've seen plenty of bugs that look like the ones in the pictures but I've never seen them stuck on me and needing to burned off or anything like that.

Any bug on me I was able to flick it off. I guess I always thought ticks could NOT be flicked off. They could only be burned off or removed with tweezers. Am I wrong??

If its a hot day - he gets a fever. If its a cold day he gets chilled. I have been reading all his old blood tests and he hasn't even been tested for Lyme.

Yes....this happens to me. I dont get fevers that I'm aware of but some people do. I think some co-infections of Lyme cause fevers. I get hot flahes or sweating at times...it used to be REALLY bad the first year....to the point that my hair and clothes would get soaked. Now that seems to have calmed down...now I mainly get chills. My temps arent totally related to the weather...I can get sweaty when its cold or chilled when its warm out.

Georgie.....read the WildCondor story.....it tells alot about what Lyme can do.

http://www.wildcondor.com/lyme.html