Omg...i Might Be On To Something

[AndreaB]

Lyme Clan.

Rinne,

At least I'll still be able to get the official update before I leave next Thursday.

Laura,

Good to see you....we'll wait until you are ready to post.

[lindalee]

Beverly, Thanks for the spoon story. I've been loosing spoons this week with a cold. She's right- you have to pick the energy depleters when your feeling bad.

Judy, Hope you hear from Evie soon.

Laura, Get your rest and take care.

Hang in there everybody

[Rachel--24]

What part of "Thou shalt not" don't you understand?

When I got home from Bioset last night I was all excited about the 10 commandments.....I read them all to my mom....to make sure she understands where I'm coming from. Not that everything in there hasnt been adressed already.

When I was done you know what she said??

"Thou shalt be quiet now and thou shalt go pay your bills!"

[AndreaB]

When I was done you know what she said??

"Thou shalt be quiet now and thou shalt go pay your bills!"

Thanks, I needed that.

[Green12]

When I was done you know what she said??

"Thou shalt be quiet now and thou shalt go pay your bills!"

Hi everybody!

Laura, anxious to hear how it all went.

Susan, that is awful about your friends, daughter was it? Very scary stuff.

Carla, sorry you haven't been feeling well.

I am so worried about Evie

[jerseyangel]

When I was done you know what she said??

"Thou shalt be quiet now and thou shalt go pay your bills!"

Your mom RULES!

[Rachel--24]

The doctor said he thought the daughter got the Lyme in utero from the mother and that she needed to see a specialist in NY.

What a funny/strange coincedence. We've been sharing the same health issues for years ...

Woah...Carla, thats really amazing that this is going on with your friend and you're just getting tested yourself. I had read that at least 50% of chronic illnesses are caused by undiagnosed Lyme.

I just read a story last night in that Lyme newspaper....it was an incredible story....brought tears to my eyes. I'm gonna tell the short version.... cuz I love telling stories and because it was really amazing.

The story is told by a Dr. (whose patient has Lyme). The patient becomes pregnant and has a very healthy and perfect looking baby boy. The baby's grandmother was the only one to get a feeling that something wasnt right with the baby.....that he didnt focus on faces or track moving objects... and seemed a little lethargic. When he was 19 days old he got a high fever and his parents took him to the ER. He had started to bleed into his brain but no tests could determine the cause.

All sorts of things were taken into consideration...a stroke, aneurysm, malformation of the brain...etc. The grandmother suggested the possibility of congenital transfer of lyme disease since the babys mom had discontinued her lyme treatment half way into the pregnancy. All of the Dr.'s and specialists scoffed at the idea and told the granmother that it was "unheard of" and furthermore impossible.

There is actually a book that was published in 2001 Infectious Diseases of the Fetus and Newborn Infant....there is a chapter in the book with over 100 pages devoted to congenital Lyme Disease...with desciptions of more than 250 cases. The Dr.'s...of course....werent aware of any of this.

The Dr.'s wanted to put a permanent shunt into the boys brain to drain excess fluid....saying he had an irreversible condition. The grandma pushed for a temporary shunt....still believeing that boy could have Lyme. The grandma was unwilling to give up...even creating tension with her daughter....who believed the Dr.'s were right.

The weeks draged on and the specialists were doing what they could to keep the boy alive. The odds that he would pull through were diminishing and his parents didnt sleep at night fearful that each night would be their baby's last.

At the request of the grandma...the Dr. (who is writing the story) called another Dr who is the nations leading authority on pediatric Lyme Disease. She was told that the babys predicament was a possible presentation of congenital Lyme. He had seen 2 similar cases...both having positive outcomes after the administration of IV antibiotics.

The Grandma then insisted that the infectious disease specialist provide her with a test tube of spinal fluid drained from the babys shunt . With the orders from the Dr. telling this story...the test tube and the babys already-frozen cord blood were sent to Igenix laboratories for PCR testing.

The PCR test looks for actual genetic material of the spirochete (lyme bacteria). The test is HIGHLY specific.....if its positive then there is no doubt it is POSITIVE. Unfortunately the test isnt very sensitive so it misses most of the true positives.

The Director of Igenix lab called the Dr. with the exciting news. Both the spinal fluid and the cord blood were positive for Borrelia (Lyme) by PCR.

As fate would have it...before they got the news of the test results the baby developed a Staph infection in the brain (a risk of the brain shunt).....he was started on 3 powerful IV antibiotics.

The grandmother informed the hospital Dr.'s of the positive Lyme tests...but by now the babys miraculous transformation spoke for itself. Within less than 12 hours of the administration of the IV antibiotics....it was evident that the IV antibiotics were treating more than the newly-aquired Staph infection.

The baby's nuerological symptoms cleared. He became alert and responsive with good muscle tone and eye contact. He began to thrive, ready to get on with life as though the previous 6 weeks had been nothing more than a nightmare.

The Doctors were bewildered and amazed, having never witnessed such a dramatic transformation is such a severely ill newborn. Reluctantly a few of the Dr.'s admitted the Lyme infection was "probably" the cause of the babys near death experience and that the presence of the bacteria in the cord blood and placenta could have only occurred due to congenital transfer.

The Dr.'s still maintain this was a "one in a million" case. The author writes..."Little do they know that those of us who have treated hundreds of Lyme patients witness congenital transfer cases (although not as dramatic as this one) every day.

Thanks to the grandma who would not take no for an answer the boy is now a healthy, happy two year old.

Your mom RULES!

Yeah....you "Mom's" tend to think alike.

She will LOVE you for that Patti.

[AndreaB]

That's a great story Rachel....with a happy ending.

I like happy endings.

Well, we've got a high wind watch again. Hopefully we won't lose power again.

They've recorded gusts up to 42 mph here in Kalama. I think it said 52 mph at Portland Int'l Airport.

[Judyin Philly]

Beverly, Thanks for the spoon story. I've been loosing spoons this week with a cold. She's right- you have to pick the energy depleters when your feeling bad.

Judy, Hope you hear from Evie soon.

Laura, Get your rest and take care.

Hang in there everybody

hi lindalee..gosh you still have that cold.??? you sounded bad on the phone last week. hope you get better soon. what was I going to email you??? see i told you to remind me...

i hope i hear from Evie fast..was sharing with susan and patti today that maybe...just a maybe

that this daughter Shirley went back home..if in deed she came from somewhere..and another sibling came in and doesn't use the compter...I'm holding to that thought . can't deal with the other thought.

Laura J can't wait to hear..post when you ready, we'll wait..

Rachel just read your Grandma Story wowowowowowowowowow!

judy

[Rachel--24]

All this talk about the medical industry is disheartening. Putting limits on how long they will treat an illness? What the heck is that??? I'm afraid the days of treating a *person* are gone. If you don't fall into a clear-cut category, and if--God forbid--you are in a grey area or subclinical state, you're pretty much resigned to figuring it out for yourself. That is if you are so inclined and have the resources available. Truly, a sad state of affairs.

I'm getting more and more upset about all this. Not to mention worried as heck. I'm wondering if my Dr. seems so "grave" about me having Lyme because of all these restrictions and denials about its existence. He seemed very frusterated about the whole thing. He asked me how I felt about what is going on....I said I felt angry. He said "Good....you should be angry.....especially after you've had to wait 4 years to find out why you're sick." He told me to continue researching and learning all I can about this.

I'm getting VERY angry now.

Its very well known that once Lyme has established itself....3 weeks of antibiotic treatment does NOT work. It just doesnt...people dont recover for months or even years later. Some people never recover on antibiotics but still...alot of people do....but it takes a LONG time. Even people who are newly infected and in the beginning stage dont always recover from only 3 weeks of treatment. Some people do better on alternatives and some people do better on antibiotics. I dont know what will work best for me but what if its antibiotics?? Does this mean I have to pay for all my treatments out of pocket no matter what?? Am I even allowed to take more than 3 weeks of antibiotics.....even if I pay myself?? What does it all mean for me??

I wonder if antibiotics are even affordable long-term w/out insurance?? Maybe I will be left with no choice but alternative treatment??

This is all very disheartening....just like you said Patti.

[CarlaB]

Rachel, what a story! I''m hoping that my kids don't have it, though I'd expect Chloe does. The pediatric Lyme specialist told my friend that Lyme can cause learning disabilities. Her NY doctor told her it can also be sexually transmitted.

It is a strange coincedence about my friend. I hadn't seen her in while, so I didn't know that she was going through the Lyme testing. We had moved from here to Indiana when our Indiana house didn't sell, so we hadn't really had our "health talks" in a couple years. She and I had the SAME symptoms, so her diagnosis almost makes me feel that I've had one, in a way. She was diagnosed based on her symptoms, and like I said, they're identical to mine ... her Igenex results are not back yet.

Also, Rachel, I'm with Patti, once a Mom, you can't help it. I remember being in college and I had my sleeves rolled up to my elbows ... I've never liked them down by my wrist, so I do this a lot. My mom and I were leaving a restaurant and she walked over to me and pushed my sleeves down. I thanked her, pushed them back up and asked her why she did that. She hadn't a clue! It was just her instinct.

[AndreaB]

Rachel,

I don't know what to say. It seems to me that to get quality healthcare you have to pay for it. Definately a sad state of affairs.

Carla,

From what has been posted I would wonder why all the kids wouldn't have lyme if you've had it since your childhood. I would assume it just hasn't made it's presence known and the kids immune system is keeping it in check. I don't know though. I would think it wouldn't pick and choose which baby to infect. If Chloe has already tested positive for celiac her immune system would already be compromised so I can see your line of thinking. I would also assume that a healthy diet has helped.

[Rachel--24]

Carla.......my Mom would always throw her arm across me in the car.....as if I would fly through the window everytime she put on the brakes.

I also cant ever leave the house without her coming to the door and telling me this...."Rachel....make sure you drive SLOW and careful." Every single time I walk out the door....I can expect to hear this.

[jerseyangel]

Rachel,

What a great story about the baby. Thank goodness for the grandmother.

I find it very interesting about your doctor's reaction to you having Lyme. I wonder if he was mentally considering the constraints on any treatment he decides on. All of your questions about this are valid ones, and frankly, worrisome.

I wish I had more to offer than moral support

[CarlaB]

Carla.......my Mom would always throw her arm across me in the car.....as if I would fly through the window everytime she put on the brakes.

I also cant ever leave the house without her coming to the door and telling me this...."Rachel....make sure you drive SLOW and careful." Every single time I walk out the door....I can expect to hear this.

When I was in high school, we were visiting my grandmother. My mom and step-father went out for the evening, and my grandmother stayed awake until they got home!! It NEVER goes away!!

[Judyin Philly]

Its very well known that once Lyme has established itself....3 weeks of antibiotic treatment does NOT work. It just doesnt...people dont recover for months or even years later. Some people never recover on antibiotics but still...alot of people do....but it takes a LONG time.

This is all very disheartening....just like you said Patti.

Rachel, this is so scary to me..

i had the bulls eye 4 times and doxy all 4 times. does this mean it didn't work?

don't even know if i had or have it as the OTHER tests they did came back neg..but haven't done the test you guys did yet.

judy

[Rachel--24]

When I was in high school, we were visiting my grandmother. My mom and step-father went out for the evening, and my grandmother stayed awake until they got home!! It NEVER goes away!!

How funny!

My mom is the same way....and yeah...she says it never goes away. She has always said that I was left on the doorstep by "gypsies".....that I'm not really hers.....which is why we are sooo different. With me being sick the worrying is even worse for her now....she says its very stressful and it doesnt end and I should NEVER have kids. She says she should have just given me back to the gypsies.

Too late for that now.

[CarlaB]

Carla,

From what has been posted I would wonder why all the kids wouldn't have lyme if you've had it since your childhood. I would assume it just hasn't made it's presence known and the kids immune system is keeping it in check. I don't know though. I would think it wouldn't pick and choose which baby to infect. If Chloe has already tested positive for celiac her immune system would already be compromised so I can see your line of thinking. I would also assume that a healthy diet has helped.

Chloe tested positive at Enterolab, but she was a low positive. Since I've had digestive issues off and on my whole life, and the always coincided with times of stress and these other symptoms, I am wondering, like Rachel has mentioned as well, if the gluten intolerance will go away when the Lyme is addressed. I know Dr. Fine says no, but he doesn't research the effects of Lyme disease -- I'm betting that dietary sensitivities can be involved. I am wondering if my immune system won't be overactive once it's not having to fight off something continually (assuming I have it) and will stop reacting to gluten. I tested negative for celiac. It will be interesting to see. I know that my digestive system is my weak spot, so I can't say I'd ever eat much gluten, but I'd like to be able to eat out without worries of contamination.

My friend has several kids and only one has it. So, they don't necessarily get it because the mom has it. I would suspect Chloe because of her learning disabilities. I'd probably have them all tested ...

We haven't noticed much of a change in Chloe going gluten-free, but she does feel it when she gets glutened.

How funny!

My mom is the same way....and yeah...she says it never goes away. She has always said that I was left on the doorstep by "gypsies".....that I'm not really hers.....which is why we are sooo different. With me being sick the worrying is even worse for her now....she says its very stressful and it doesnt end and I should NEVER have kids. She says she should have just given me back to the gypsies.

Too late for that now.

No, I think you should have lots of kids immediately. Just think, then you'd have something else besides your health to worry about.

Rachel, this is so scary to me..

i had the bulls eye 4 times and doxy all 4 times. does this mean it didn't work?

don't even know if i had or have it as the OTHER tests they did came back neg..but haven't done the test you guys did yet.

judy

Apparently, it can work, but it doesn't always work.

[Rachel--24]

Rachel, this is so scary to me..

i had the bulls eye 4 times and doxy all 4 times. does this mean it didn't work?

don't even know if i had or have it as the OTHER tests they did came back neg..but haven't done the test you guys did yet.

judy

Judy,

I would be concerned mainly because of all the health troubles you've had. A bulls-eye means that you have gotten infected with Lyme....even if the bloodtest is negative. Thats why they ALWAYS give antibiotics when there is a bulls-eye. They "assume" that 3 weeks will do the trick but this is not ALWAYS the case and its been proven over and over again that 3 weeks is not always enough....because of the way the Lyme bacteria can evade the immune system and the antibiotics. Also been proven over and over that those tests are no good. Igenix has the best test for Lyme but still not 100%. Lyme is very hard to diagnose.

I did not know that you had 4 bulls-eye's....thats alot. I would definately get an Igenix test. Do you still have unresolved symptoms going on??

Judy....were you sick before the bulls-eye rashes? Did you ever get fever or anything like that any of the times that you had the bulls-eyes?

[DingoGirl]

Carla.......my Mom would always throw her arm across me in the car.....as if I would fly through the window everytime she put on the brakes.

Yup, they all did this, remember not having any seat belts growing up you could just bounce around in that metal box on wheels.....so the moms threw their arms across us. I still do it to my friends, just to be silly, of course.

When I was in high school, we were visiting my grandmother. My mom and step-father went out for the evening, and my grandmother stayed awake until they got home!! It NEVER goes away!!

Um, am I the only one whose parents never worried? and I was such a savage child, running wild, god knows where, no shoes ever and weeds in my hair. Only when I started climbing, all those years, did my mom worry.....I have never been asked by my mom to "call when you get there..."

Carla, I ALWAYS roll my sleeves up too. Always.

[Rachel--24]

Carla,

The Bioset lady talked to me about how they are discovering that Lyme can be sexually transmitted and that they know that it can be transferred congenitally. I have read that they have isolated the Lyme bacteria in sperm. This is not widely accepted by the medical profession....they would say this is not possible. I dont believe all that the medical profession has to say anymore....obviously they have much to learn....it is very obvious just from reading that story....which only occured 2 years ago.

[AndreaB]

When I was in high school, we were visiting my grandmother. My mom and step-father went out for the evening, and my grandmother stayed awake until they got home!! It NEVER goes away!!

We haven't noticed much of a change in Chloe going gluten-free, but she does feel it when she gets glutened.

That's interesting. Our family is much the same way but we all have at least one celiac gene. I don't think we had progressed to that point though as our numbers were so low.

How long does it take to get results back...... 3 weeks?

[CarlaB]

Rachel, so if they've found it in sperm, I wonder if women can pass it to men?

[AndreaB]

I did not know that you had 4 bulls-eye's....thats alot. I would definately get an Igenix test. Do you still have unresolved symptoms going on??

Judy....were you sick before the bulls-eye rashes? Did you ever get fever or anything like that any of the times that you had the bulls-eyes?

That is a lot of bulls-eye's. Inquiring minds want to know.

You guys teach me so much on this thread.

I'm learning.....just slower on some days.

[CarlaB]

How long does it take to get results back...... 3 weeks?

Not sure.