Omg...i Might Be On To Something

[CarlaB]

Susan, I'd skip the hot chocolate and Bailey's and go for hot tea, lemon juice and whiskey!

[Rachel--24]

Rachel, is there something AT HOME that's making you sick? Mold, maybe?

Nope....theres no mold. The dust from the heater at home and at my mom's house has been making sick since the heater started being used a couple weeks ago. I'm always sick...no matter where I go though. I was just referring to noone was wearing any strong perfumes or anything like that at the party...so I didnt get a really bad reaction to anything and was able to enjoy myself.

[AndreaB]

Susan,

I hope this passes quickly for you. Enjoy your restful day.

[Rachel--24]

Lyme Disease in my area....bay area, CA.

Open Original Shared Link

Open Original Shared Link

Green said a more reliable screening is the Western blot, which checks for 10 to 12 antibodies associated with B. burgdorferi - several more than the ELISA. Lyme antibodies vary depending on where the bacteria have settled in the body. Many of the variations that can be detected by the Western blot do not show in the ELISA. As a consequence, all Lyme patients with false-negative ELISA results will never receive the test many experts feel is the only reliable non-clinical method of testing for Lyme disease.

"If we had an AIDS test that missed 50 percent of all AIDS patients, people would be screaming on the Capitol steps in Washington," Stricker said. "Because it's Lyme, no one seems to care."

[happygirl]

x

[AndreaB]

Somebody's been doing more research.

Hi all!

L,

Was your appointment this week with the new doc? I spaced it......sorry.

[happygirl]

x

[Rachel--24]

what else do we have this week?

I have 3 appts. this week. My big appt is tomorrow.....when I'll get the results for co-infections.

Tues and Thurs. I have Bioset.

[happygirl]

x

[AndreaB]

I have 3 appts. this week. My big appt is tomorrow.....when I'll get the results for co-infections.

Tues and Thurs. I have Bioset.

Can't wait, can't wait. Is your appointment after work?

[Rachel--24]

Tomorrow is my big day for......

ERIC MOVING HERE :) :)

YAY!!

Yes, I'm sure Happygirl is gonna be really happy to have her hubby back full-time.

My appt. isnt till 4:30....I'm gonna post and let you guys know how it went but it wont be until evening time. My mom's gonna go with me this time.

[miamia]

I have 3 appts. this week. My big appt is tomorrow.....when I'll get the results for co-infections.

Tues and Thurs. I have Bioset.

Rachel-

wow I am looking forward to your appt. I can't wait to find out the results- although I guess it will be late my time becasue I'm in NY.

Andrea-

no major appts for me this week just biofeedback, but hopefully fingers crossed some of my test results. And I finish my candida mediciene-

oh Rachel I am on diflucan and I did have my liver checked when I had the other blood work done and everything came back fine- thank god

Ohhh, Rachel, tomorrow will be a big day for you. Please post as soon as you are up to it. I'll be thinking of you. Hugs!

Tomorrow is my big day for......

ERIC MOVING HERE :) :)

happygirl will be VERY happy! I go to work, and he will be here by the time I get home!

Laura-

Thats great- good luck concentrating on work- I'm sure that will be nearly impossible.

I hope your appt on wednesday goes well - is that the one with Dr. Levin. I googled him he sounds good.

Miamia

[jerseyangel]

Hi Andrea

I have an appt with a new doctor on Wednesday. Over the phone I was told they would discuss leaky gut with me. We'll see...

Also, I'm calling the Gyn this morning about this hideous pain. I'm thinking it's due to either my fibroid or the ovarian cysts. I was doing some research, and both can cause this kind of pain. Can't blame this on food or anything--it comes in cycles.

I will probably end up having surgery, but I'm at the point where I'll do it.

I'm so excited and happy for Laura!!

Mornin' everyone!

[miamia]

Hi Andrea

I have an appt with a new doctor on Wednesday. Over the phone I was told they would discuss leaky gut with me. We'll see...

Also, I'm calling the Gyn this morning about this hideous pain. I'm thinking it's due to either my fibroid or the ovarian cysts. I was doing some research, and both can cause this kind of pain. Can't blame this on food or anything--it comes in cycles.

I will probably end up having surgery, but I'm at the point where I'll do it.

I'm so excited and happy for Laura!!

Mornin' everyone!

Patti-

I am sorry to hear you are still so uncomfortable- hopefully you will get some answers today from your gyn.

Are you going to be tested for leaky gut- have you ever been ?

I hope today is a better day

Miamia

[jerseyangel]

Patti-

I am sorry to hear you are still so uncomfortable- hopefully you will get some answers today from your gyn.

Are you going to be tested for leaky gut- have you ever been ?

I hope today is a better day

Miamia

Hi Miamia--how are you?

I've never been tested for leaky gut, but I just know I have to have it. With so many food intolerances (that are not allergies) and the fact that I took antibiotics and steroids many times. It all adds up. I would welcome the chance to be tested--I don't know how knowledgeable this doctor is going to be--or how open-minded.

The Gyn office opens at 9, so I'll be calling for an appt soon. They are usually very good about getting people in within the week or so.

Are you doing better--I know last week was rough for you

[jerseyangel]

OMG--I hope Donna's alright! Did any of you see this? She's in the Caribbean, too.

Open Original Shared Link

There's gotta be more than one ship there--right?

[CarlaB]

OMG--I hope Donna's alright! Did any of you see this? She's in the Caribbean, too.

Open Original Shared Link

There's gotta be more than one ship there--right?

The article said it was a 7 day cruise that ended Sunday, can't be hers!!

[jerseyangel]

The article said it was a 7 day cruise that ended Sunday, can't be hers!!

Thank goodness! I must have missed that part

Sorry

[CarlaB]

Thank goodness! I must have missed that part

Sorry

I caught it the first time through, but you wouldn't believe how long it took me to figure out that her leaving Friday and that cruise ending Sunday was fewer than 7 days!! What is wrong with my brain????

[jerseyangel]

I caught it the first time through, but you wouldn't believe how long it took me to figure out that her leaving Friday and that cruise ending Sunday was fewer than 7 days!! What is wrong with my brain????

I used to have a mind like a steel trap! Now, I have to read and re-read. You should see how long it takes me to read the paper

[happygirl]

x

[jerseyangel]

Laura,

If you tested neg for leaky gut, I probably would, too. I don't know how reliable those tests are, anyway. They may be-- I just don't know much about them.

I did get an appt with the Gyn Thursday at 3. It's not with the doctor I had seen the previous 2 times (my doctor before her decided to be a stay at home mom)--it's with the guy who started the practice. He's supposed to be the best, and hard to get into see. I lucked out!

If we don't see you around tonight--we'll know where you are Have fun

[AndreaB]

Andrea-

no major appts for me this week just biofeedback, but hopefully fingers crossed some of my test results. And I finish my candida mediciene-

oh Rachel I am on diflucan and I did have my liver checked when I had the other blood work done and everything came back fine- thank god

Yay for finishing your medicine and for your liver being ok!

Hi Andrea

I have an appt with a new doctor on Wednesday. Over the phone I was told they would discuss leaky gut with me. We'll see...

Also, I'm calling the Gyn this morning about this hideous pain. I'm thinking it's due to either my fibroid or the ovarian cysts. I was doing some research, and both can cause this kind of pain. Can't blame this on food or anything--it comes in cycles.

I will probably end up having surgery, but I'm at the point where I'll do it.

I'll be curious to hear what this new doctor says.

I hope you can get the fibroids or cysts taken care of quickly. That doesn't sound like fun.

OMG--I hope Donna's alright! Did any of you see this? She's in the Caribbean, too.

Open Original Shared Link

There's gotta be more than one ship there--right?

Carla already answered.....this wouldn't be Donna as they boarded on the 26th.

[Rachel--24]

Wow...thank God Donna is safe.

I was scared but then saw that they said something about Nov. 26th. Donna was still on land at that time.

Carla....I'm super slow at figuring stuff out too.

Patti...Good luck at your appt. today.

I'm not sure how reliable those leaky gut tests are either.

Laura...I'm assuming you got tested by mainstream Dr.'s?? I wasnt even aware they tested for leaky gut. I wonder if its the same type of test the other doctors use??

I got a newsletter from the BetterHealthGuy. It mostly talked about his journey through Lyme treatment this past year. I think he's maybe been doing treatment for a year now....maybe a little longer. The end of the letter sounded promising...gives me some hope.

2006 has been a year of continued progress. Fortunately, I am very functional at this point.Though a few symptoms remain, I am ready for a winter of snowboarding in Tahoe once again! I also recently started an hour long Turbo Kick Boxing class which is amazing. The only challenge is my lack of coordination. Sadly, that is not from Lyme!

This part of his letter was very important....its about the restrictions they are putting on doctors as far as treating chronic lyme.

We Must Take Action NOW!

I generally attempt to focus my energies on understanding the disease process and potential treatment options around Lyme disease and have not been quite as involved in the political side of the disease. Sadly, at this point, I do not think it is possible to remain uninvolved on that front.

With the publication of the IDSA (Infectious Disease Society of America) guidelines in October, our ability to get diagnosed and then appropriately treated has been challenged even further. I truly believe that these new guidelines threaten the lives of many.

I applaud both the LDA (Open Original Shared Link) and ILADS (Open Original Shared Link) for their efforts to provide information and guidelines which focus on the quality of life for the patient – and, of course, on science! LDA and ILADS held their individual conferences on the same weekend in October and though there were limited new treatment options, the event reinforced how important these two organizations are to our ability to choose an appropriate healing journey and gain access to appropriate treatments.

My call to action for you is simple.

Please take a moment to sign the petition provided by the LDA against the IDSA guidelines. I cannot stress enough my strong belief that if anyone chooses not to sign this petition, recognize that it may mean that you lose your right to choosing a treatment option that can provide you with a better quality of life. It is as simple as that. I cannot envision why anyone that either has or knows someone that is touched by Lyme disease would not sign this petition.

The petition currently has just under 20,000 signatures. However, this is not enough. The original goal was 50,000 signatures. So, PLEASE, do two things for me. First, go sign the petition yourself and second, send this information to everyone you know asking them to do the same. Our lives depend in large part on our continued access to treatment based on choice.

I would like to post a link to this petition in case anyone here wants to sign it and hopefully pass it on to others.

I'm not sure if its in violation of board rules so will have to check with Scott on that.

Patti...do you have any idea if its ok???

This is a really serious issue for those of us who have Lyme.

For now....anyone who wishes to sign this petition....please pm me and I'll send it to you.

[jerseyangel]

Rachel,

I don't see where it violates any board rules. I'd be happy to sign it--I'll send you my email address

I think I told you that my husband's cousin's daughter has a terrible case of Lyme and was on IV antibiotics. Disrupted her life in a major way. My husband, himself, had it last summer.

What with so many affected, and the unreliable testing that's out there, it's a shame that they now want to limit the treatment options.