Omg...i Might Be On To Something

[Rachel--24]

I was surprised but my HR dept said you get FMLA for simply headaches without even a diagnosed condition to go along with it... guess it might differ from job to job in terms of how easily it is granted...

Yeah....my mom works with a woman who takes FMLA....for migraines. My mom says she gets paid though...from all that I've read I thought that FMLA is unpaid leave??

My Dr. was going to put me on FMLA....and I was not diagnosed with anything. I didnt have a diagnosis for the two years I was on disability either...my diagnosis was simply called "illness".

[Rachel--24]

I'll get my Igenix results in about 3 weeks. Very curious to see!

Yeah....you've got us all on pins and needles Bev.

The jury's still out on that one. They have found spirochetes in semen, breastmilk, too, but can you actually get it that way? I would think it would be even more widespread than it is if it were possible ... then again, I also think it's more widespread than I previously thought.

I think its more widespread than most people think. I think alot of the population has been exposed to Lyme....but just not sick from it. The other (more expensive) LLMD in my Dr.'s office says that 90% of the east coast is exposed and 40% over here in Nor. Cal. People dont get sick until the scales are tipped...and that doesnt always happen.

I was reading some posts on LymeNET from the mothers of autistic kids diagnosed with Lyme. One post discussed Dr. Amy Yasko (who treats autism). This is what she wrote.

We are following Dr Amy Yasko's protocol for the treatment of autism. To complicate matters, her view on Lyme seems to be that we all probably have the organism on board and only those who have a greater exposure to it or whose immune systems are impaired will have it overgrow. It is not the organism she approaches first because it is hard to eradicate and can have a rocky detox. She advises first addessing the total body burden of abnormal organisms, especially in the gut, lower them, and then you have a better immune system and a better shot at the Lyme organism, plus a less problematic detox.

I do think she might be correct in that most of the Autistic kids and the chronically ill do have Lyme on board....but its so hard to know how to go about treatment. I dont think you can use the same protocol for each person but I do agree that you have better success dealing with Lyme once the total burden is lowered.

So, bummer of all bummers...I can't have chocolate. I am sad.

Donna...SHOOT...no more chocolate!! I am sad for you!

Chloe had a soccer game. It was 86 degrees today, but little humidity, so it was nice out. She's miserable ... she has a terrible headache. Not only have all my kids been exposed to Lyme from me (except the adopted one), but they've also had ticks themselves. I'd be surprised if she doesn't have Lyme. I'm sensitive to the heat like that, too. She's had plenty of water, it's not dehydration.

When is the appt?? I think it must be coming up soon.

Not that I never splurged, but if I ate a Big Mac, I knew it was junk food!

Ummm...I dont know if I thought of Big Macs as "junk food". When people would talk about favorite resteraunts....they'd be naming real fancy places.....and I would always come back with "McDonalds".

I didnt think of it as "junk"....I just thought...why do people like the expensive stuff so much?? A big Mac is just as good and you can get a whole bunch of them for the same price as a single plate at one of those resteraunts.

Guess I know why its so cheap now.

It is interesting to me though that my craving for sweets really started with my taking the chlorella and I am wondering if I am creating more yeast to protect myself, maybe if I cut back on the chlorella...

Rinne....all my Dr.'s have said the same thing Klinghardt says....that the yeast flares up when chelating...no matter what type of chelation you're doing. When you mobilize metals candida flares up for some reason. When the metals get mobilized the yeast is released and it causes a flare-up of symptoms. I dont know if the immune system is allowing more overgrowth during this process or what?? Dr. Derksen wrote on my instructions to continue to treat candida as it is often flared up when chelating metals.

I completely agree with you Carla, I think at different points different treatments work, I don't want to get stuck in any view that limits my ability to regain my health and the way I see it is that any view that includes hostility and defensiveness will not lead to well being.

This is what I hate about LymeNET too.....the hostility.

I mostly read the posts which pertain to treatments I'm on...or stuff like ART...but there is alot of bashing that goes on in these threads. Scott is often targeted because of his posts on alternative stuff...he's taken antibiotics too....he's not against antibiotics....but he incorporates alot of methods in his treatment program...both alternative and traditional. The board is mainly anti-alternative so there is alot of bickering....instead of sharing.

I agree with what you said about all of us meeting before Lyme. The bonding took place long before we got diagnosed...therefore the concern is not about who uses which method of treatment and why...but rather we all just wanna see those we've grown to care about regain their health...whatever it takes....and whatever the chosen method is.

I was recently kind of "attacked" for my choice to use alternative methods. I'm secure in my descision so its no matter to me what others think...but its not something I would have expected in this thread which has been only full of support for more than 1000 pages. I agree that hostility does not lead to well being.

I absolutely think I am not detoxing properly and that is a large part of my problems. I've done a detox diet twice--both times got very sick...most likely because I was detoxing too quickly, which really just means I had a lot to detox probably, lol.

Yeah....thats what happened to me when I cut out processed foods and other bad stuff. Its like I got totally flooded with toxins. You wouldnt even believe the heightened level of food and chemical sensitivity. I totally peaked for that first week...I dont really even think it could have gotten any worse than it was for that short time. I was scared...I didnt understand what was happening at all....I thought I'd have to move away and live in a bubble somewhere.

I obviously had major toxins that my body suddenly started trying to let go of. I hope I never experience anything like it again.

I also had some hormone testing. My testosterone is high . I'm not sure what it means. Sometimes, it's associated with PCOS, polycystic ovary syndrome, but I've never shown any signs of having that. Actually, I'm not surprised my testosterone is high because I have a low voice and I get the unibrow if I don't pluck and a bit of a mustache. Well, I'll be having more testing to figure that out.

Thats interesting because when I was first getting real sick I suddenly had excess hair growth.

I was upset about having to pluck but after I went through that major detox from my diet change....all of a sudden the excess hair just fell off on its own.

I just noticed it wasnt growing anymore and I didnt have to pluck anything anymore.

In the past couple years there has been a handful of times that the hair growth came back and then corrected itself again. Its always when I'm feeling super toxic.

This actually happened once a little more than two years before I got sick. It was after a break-up...I was having alot of stress, smoking alot...not sleeping enough, etc. I started getting the "crawly" sensations on my face and some hairgrowth and a really dry mouth. Its the only time I can recall ever experiencing this kind of stuff before I got sick.

It was very short lived though...everything corrected itself in only a couple weeks. That one occurance definately makes me aware that stuff was happening...I was becoming toxic....and this was before my filling removal disaster.

What happens to increase testosterone?? In my case the hair growth definately ocurrs from increased toxicity....but why??

[Rachel--24]

duplicate

[Rachel--24]

Well, that's all for my update. Forgive me if I don't have too many personals, but I do try to catch up on this board when I can cuz I like all you crazy kids! It's spring, and I'm spending more time outside. I'm soooooo happy that I have half of my garden in and I actually feel well enough to garden! I was too sick last summer and had no energy to do any of that. Plus I had my surgery last spring about this time. So, even though I still can't eat gluten or dairy, I'm doing much better than this time last year!

Yay Claire!!

Thanks for the update.

Yes...we are a bunch of crazies arent we.

I totally love the spring and even better SUMMER!! I'm working on the yard stuff too...its been my summertime hobby ever since I got sick. I really enjoy it.

The first summer I was on disability I totally landscaped my yard. I built a pond and everything. Maybe tomorrow I will post before and after pics?? Anyone wanna see some of the yard work I've done??

I kinda missed all the CD57 testing discussion. Can someone give me a synopsis of what it tests for and why it's the latest crazy?

Ok...

CD57 - We have all likely heard of people with HIV/AIDS getting their T-cell counts or CD4 cell counts checked on a regular basis. Current information suggests that there is a similar population of NK (natural killer) cells called CD57 cells that are known only to be suppressed in the presence of Lyme disease.

Generally guidelines are that a score of < 20 indicates advanced or highly active Lyme disease. Scores of 20-60 are indicative of active Lyme disease where scores > 60 start to suggest that the Lyme infection is less active. A normal test result would be > 200. It is my opinion that treatment is necessary until the celiac disease-57 test score is 150 or above. The lower the result, the more likely a relapse if treatment is terminated.

The test can be an indication of progression of disease or of progress in treatment. However, it should be noted that it is not uncommon to see only small changes in the results until the end of treatment where the results often then jump quickly to higher levels. For now, it is my opinion, that this test can both be used as an indicator of Lyme disease presence and as a marker for when to consider stopping treatment.

Although immunologic abnormalities appear to play a role in this disease, specific immunologic markers of chronic LD have not been identified.

METHODS: We evaluated 73 patients with chronic LD for lymphocyte subset abnormalities using flow cytometry. Of these, 53 patients had predominant musculoskeletal symptoms, while 20 patients had predominant neurologic symptoms. The estimated duration of infection ranged from 3 months to 15 years, and all patients had positive serologic tests for B. burgdorferi.

Ten patients with acute LD (infection less than 1 month) and 22 patients with acquired immunodeficiency syndrome (AIDS) served as disease controls.

RESULTS: All 31 chronic LD patients who were tested prior to antibiotic treatment had significantly decreased CD57 lymphocyte counts. Nineteen of 37 patients (51%) who were tested after initiating antibiotic therapy had decreased CD57 levels, and all five patients tested after completing antibiotic treatment had normal CD57 counts.

In contrast, all 10 patients with acute LD and 82% of AIDS patients had normal CD57 levels, and the difference between these groups and the pre-treatment patients with chronic LD was significant.

Patients with chronic LD and predominant neurologic symptoms had significantly lower mean CD57 levels than patients with predominant musculoskeletal symptoms. CD57 levels increased in chronic LD patients whose symptoms improved, while patients with refractory disease had persistently low CD57 counts.

CONCLUSIONS: A decrease in the CD57 lymphocyte subset may be an important marker of chronic LD. Changes in the CD57 subset may be useful to monitor the response to therapy in this disease.

From what I read its not exactly a "Lyme test"....as in how much Lyme do we have?? Its more of a test which takes a look at the immune systems ability to fight off the infection. As the immune system makes gains over the bacteria...the CD57 cells increase.

[NoGluGirl]

Dear Rinne,

Yep, the rice paper wrappers are exactly what I am talking about! You use them for Spring Rolls as well. I want to make some pork spring rolls. Those will be so good! I have a plan!

I am glad we are all a part of this forum too! We have a loving relationship with all in Rachelville!

That is healing in itself. Of course, the yurts might be magical, too. That is a distinct possibility!

Rinne Bars are also being administered as medicine by the pharmacy.

Dear Rachel,

That is so true about people bickering. I find people on this forum on other threads picking at each other. It is absolutely terrible! Why must people start trouble? We are supposed to be helping each other!

I just want to ask those people "What is the matter with you?" I prefer to avoid conflict when possible. It is bad for you in general. Others' negative energy can make you sick. It is unhealthy to be involved in discord.

I thought that was interesting about you saying how chelation tends to irritate the yeast more. I agree that antibiotics can help some Lyme patients, but feel it is not the best approach for all Lyme patients. I think there is an individual case element here that needs seriously considered. I have a feeling antibiotics would make things worse for me. I would probably have an unbearable herx.

Going herbal seems safer for me. As far as those who are chelating goes with Candida, it seems during this period they may need to increase antifungal administration. That could combat the excessive yeast coming along due to chelation. I am glad someone addressed this. There is no wrong approach except doing nothing.

Dear Lizajane,

Welcome to the thread and the forum! I know what you mean about the additional intolerances. It sure is a frustrating thing to deal with. It is bad enough to have Celiac and dairy issues, but then other things start to appear out of nowhere! The other day, I got sick from beans. I will eat something two or three days in a row with no problem, then the fourth day, I will get very ill from things. I need to do a rotation diet to see what the problem foods are. There is a possibility that it is the carbohydrates, because of the yeast. It is hard to say at this point.

Sincerely,

NoGluGirl

[Rachel--24]

This place has given me so much laughter and I feel that that it is one of the most important healing tools we can exercise. And. I know I like to tease about "Lyme Clan" but in a very serious way I mean it as the way in which we are connected and trusting the connection we are nourished by eachother's intentions and wishes for our wellness. Simply, we are heartened by eachother.

That brought a big smile to my face.

Yes...we are a "clan" for sure.

Through thick and thin....herxes and heartaches...laughter and tears. We met in sickness and will surely remain a "clan" in health.

[Rachel--24]

Duplicate

Dunno whats going on with the board.

[rinne]

I think its more widespread than most people think. I think alot of the population has been exposed to Lyme....but just not sick from it. The other (more expensive) LLMD in my Dr.'s office says that 90% of the east coast is exposed and 40% over here in Nor. Cal. People dont get sick until the scales are tipped...and that doesnt always happen.

.....

Rinne....all my Dr.'s have said the same thing Klinghardt says....that the yeast flares up when chelating...no matter what type of chelation you're doing. When you mobilize metals candida flares up for some reason. When the metals get mobilized the yeast is released and it causes a flare-up of symptoms. I dont know if the immune system is allowing more overgrowth during this process or what?? Dr. Derksen wrote on my instructions to continue to treat candida as it is often flared up when chelating metals.

......

I was recently kind of "attacked" for my choice to use alternative methods. I'm secure in my descision so its no matter to me what others think...but its not something I would have expected in this thread which has been only full of support for more than 1000 pages. I agree that hostility does not lead to well being.

......

What happens to increase testosterone?? In my case the hair growth definately ocurrs from increased toxicity....but why??

Wow, 90% and 40%, that is incredible.

Okay, I know I have to deal with the yeast. Yesterday I got into the corn chips and suddenly was feeling a yeast infection coming on and I don't get them, I am wondering about diflucan and conventional treatments for yeast, any recommendations?

I wondered about the post a little while back and whether it was in response to someone attacking you, and I am glad to know that you feel secure and really why shouldn't you, the alternative methods have brought you some measure of health back and what have conventional doctors done? Just to clarify that, alternative includes western trained doctors and by conventional doctors I mean ones closed to exploring alternative means.

The testosterone question is fascinating? The obvious thing to me is that when we are being attacked our bodies produce testosterone because it is a factor in agression.

Thanks for the liver scientificness, I seriously saw myself in most of it, went straight to the fridge and took my milk thistle which I never remember to do and I am sure the once evey two months is doing nothing for me. The coffee enemas I am thinking may be a good idea and since I can't drink coffee anymore...

Dear Rinne,

Yep, the rice paper wrappers are exactly what I am talking about! You use them for Spring Rolls as well. I want to make some pork spring rolls. Those will be so good! I have a plan!

....

Rinne Bars are also being administered as medicine by the pharmacy.

Rice is not one of the things I should have but there is so little in one of those wrappers it might just be okay especially if I do it as a real treat. You've made me hungry.

Medicinal rinne bars, of course.

[NoGluGirl]

Wow, 90% and 40%, that is incredible.

Okay, I know I have to deal with the yeast. Yesterday I got into the corn chips and suddenly was feeling a yeast infection coming on and I don't get them, I am wondering about diflucan and conventional treatments for yeast, any recommendations?

I wondered about the post a little while back and whether it was in response to someone attacking you, and I am glad to know that you feel secure and really why shouldn't you, the alternative methods have brought you some measure of health back and what have conventional doctors done? Just to clarify that, alternative includes western trained doctors and by conventional doctors I mean ones closed to exploring alternative means.

The testosterone question is fascinating? The obvious thing to me is that when we are being attacked our bodies produce testosterone because it is a factor in agression.

Thanks for the liver scientificness, I seriously saw myself in most of it, went straight to the fridge and took my milk thistle which I never remember to do and I am sure the once evey two months is doing nothing for me. The coffee enemas I am thinking may be a good idea and since I can't drink coffee anymore...

Rice is not one of the things I should have but there is so little in one of those wrappers it might just be okay especially if I do it as a real treat. You've made me hungry.

Medicinal rinne bars, of course.

Dear Rinne,

You probably would have to test them to see if you tolerate them. You know how that goes. When your body rejects food, what else can you do? We are in such a precarious position when it comes to eating. Most people never have to think about it, you know? Man, I am always hungry! Not much fills me up. The Rinne Bar Rx, just what the doctor ordered!

I have a new avatar. It took forever to show up. This forum is all crazy lately. This is a more current pic with my hair pulled back. I am smiling more in this one. I am going to do a new one as soon as I get some make-up to cover those zits! I am not sure that it is acne. I am beginning to think some of it is DH. I have little red bumps between my nose and upper lip that are more like small blisters.

Sincerely,

NoGluGirl

[jerseyangel]

I was recently kind of "attacked" for my choice to use alternative methods. I'm secure in my descision so its no matter to me what others think...but its not something I would have expected in this thread which has been only full of support for more than 1000 pages. I agree that hostility does not lead to well being.

Oh no, not here

Rachel, You made a well-informed decision for yourself--I'm glad that you are secure in that and are not about to be swayed. I've "known" you here since before the thread ever existed, and have seen firsthand how you have evolved in this quest. You've done your research, no one can argue with that.

I always say--"to each his own", and hostility certainly is not good for anyone. This thread has become a kind of oaisis for all of us and I hope that never changes

[Mtndog]

That brought a big smile to my face.

Yes...we are a "clan" for sure.

Through thick and thin....herxes and heartaches...laughter and tears. We met in sickness and will surely remain a "clan" in health.

:wub: :wub: :wub:

Rachel- That was beautiful. We could be the Sisterhood of the Traveling Toxicities But we have Charlie too so I'm going to have to think on that one!

happy Mother's day to all you moms whether you are the mother of a daughter, son, furry fuzz ball, fish or a garden. If you are taking care of a living thing...then you are a mom!

Rachel- DEFINITELY want to see pics of your yard!

Donna- I will write you a eulogy for chocolate.

[gluless]

HAPPY MOTHER'S DAY TO EVERYONE!!! (IT'S ME ROBBIN!)

OMG, I can't believe this thread is still going on!! A tribute to sisterhood!!

Bev, your mother's day wish is almost exactly what I wrote in DS!! No, I didn't steal it!!! I swear!!! GMTA!! Have a wonderful day everyone and I hope you are all having glorious sunshine today!

[Rachel--24]

HAPPY MOTHER'S DAY TO EVERYONE!!! (IT'S ME ROBBIN!)

Hi Robbin !!!! <as she waves wildly>

Happy Mothers Day to you too!!

Glorious sunshine seems to be poking through....YAY for sunshnine and yardwork.

Nice to "see" you.....dont be a stranger!! We miss you here....were just talking about what a sweetie you are.

Have a great day!!!

[AndreaB]

The first summer I was on disability I totally landscaped my yard. I built a pond and everything. Maybe tomorrow I will post before and after pics?? Anyone wanna see some of the yard work I've done??

I would like too.

I have a new avatar.

It looks very nice. I like smiles.

[AndreaB]

happy Mother's day to all you moms whether you are the mother of a daughter, son, furry fuzz ball, fish or a garden. If you are taking care of a living thing...then you are a mom!

I second that!

HAPPY MOTHER'S DAY TO EVERYONE!!! (IT'S ME ROBBIN!)

OMG, I can't believe this thread is still going on!! A tribute to sisterhood!!

Great to see you Robbin. Hope you come back more frequently.

Glorious sunshine seems to be poking through....YAY for sunshnine and yardwork.

It's not supposed to be very warm here today....but sunny. Monday and Tuesday will be nice (for us that is )......around 80.

[jerseyangel]

The first summer I was on disability I totally landscaped my yard. I built a pond and everything. Maybe tomorrow I will post before and after pics?? Anyone wanna see some of the yard work I've done??

I'd love to see them

happy Mother's day to all you moms whether you are the mother of a daughter, son, furry fuzz ball, fish or a garden. If you are taking care of a living thing...then you are a mom!

Well said, Bev!! And the same to you--mommy to Angus and the kitties

HAPPY MOTHER'S DAY TO EVERYONE!!! (IT'S ME ROBBIN!)

OMG, I can't believe this thread is still going on!! A tribute to sisterhood!!

Yep--still here! Glad you popped over, Robbin. Hope you come by more often.

[happygirl]

Happy Mother's Day to all you ladies with kids, grandkids, pets.....

I know I am eternally grateful to my wonderful mother for all that she has done for me. Sniffle!

Happy Mother's Day to my cyber mom, Patti. xoxo

[Rachel--24]

Rachel- That was beautiful. We could be the Sisterhood of the Traveling Toxicities But we have Charlie too so I'm going to have to think on that one!

ROFL!!!

Sisterhood of the Traveling Toxicities!!!

OMG Bev...you crack me up! I LOVE it!!

That is so hilarious!!

But yeah...I dont think Charlie will wanna be part of any "traveling sisterhood".....not any more than he would want his toenails painted green.

happy Mother's day to all you moms whether you are the mother of a daughter, son, furry fuzz ball, fish or a garden. If you are taking care of a living thing...then you are a mom!

Yup...I am a mom to Bear, Ceaser, Sierra and Toby the turtle.

Although Toby pretty much takes care of himself. He lives in the yard...hibernates in the winter....I only provided him landscaping...he built his own home...and God created the snails which Toby is very grateful for.

Rachel- DEFINITELY want to see pics of your yard!

Pictures of the yard coming up in the next hour or two ....yeah my computer is even slower than my brain is!

Happy Mothers day to the BEST mom.....(yeah mom....I'm talking about you) !!

Happy Mothers day to Andrea, Carla (still dont know how you do it! ), Rhonda, Robbin, Beverly, Patti, Judy, Jin (for taking care of Dart), Susan, Alison and anyone else I might have missed!!

Dont know if Laura and Miamia....or Donna have any furry friends.

[jerseyangel]

Happy Mother's Day to my cyber mom, Patti. xoxo

Thanks sweetie

[Rachel--24]

Happy Mother's Day to my cyber mom, Patti. xoxo

So cute.

[happygirl]

Yes, I have two sweet kitties....Toby (my baby) and Sully (who is Patti's cat's twin). Toby is on my lap as we speak.

[Rachel--24]

And the same to you--mommy to Angus and the kitties

There are kitties!!! I did not know this....thought Angus was an only child.

Are the kitties "baby kitties" or "grown up" kitties??

[Rachel--24]

Yes, I have two sweet kitties....Toby (my baby) and Sully (who is Patti's cat's twin). Toby is on my lap as we speak.

Ahhh...you have a Toby the kitty and I have a Toby the turtle.

Ceaser is on my lap too...well actually he was sleeping at my feet but after reading your post I had to snatch him up and snuggle him.

He's not much of a snuggler though...he'll only last in my lap about 2 minutes.

[Rachel--24]

Rachel, You made a well-informed decision for yourself--I'm glad that you are secure in that and are not about to be swayed. I've "known" you here since before the thread ever existed, and have seen firsthand how you have evolved in this quest. You've done your research, no one can argue with that.

Thanks Patti.

Yup...we "met" long before this thread...and I met Judy and Susan back then as well.

[jerseyangel]

Thanks Patti.

Yup...we "met" long before this thread...and I met Judy and Susan back then as well.

I remember Susie's first posts! And my buddy Judy joined at about the same time I did... Gosh, we've been around long enough to go down memory lane!