Omg...i Might Be On To Something

[dlp252]

Hi Donna

Adding my wub to the love fest

Hi and me too!

What do we pay them so much money for again?

Been asking myself the same question!

[Green12]

Since this is the week of giving thanks I wanted to post something in our OMG thread to you all. This is early but I'm not sure what everyone's plans are, if some are traveling, taking off work, etc...

A huge thank you to Rachel for being such a fighter, for never giving up, and for starting this thread for all of us to come together. In your search for answers you have helped us all. I am eternally grateful.

To everyone here, thanks for sharing your personal stories and your advice, your time, your support, your kindness. Being a part of this "team", this unique, diverse, circle of friends has absolutely changed my life.

I love you all

[CarlaB]

Since this is the week of giving thanks I wanted to post something in our OMG thread to you all. This is early but I'm not sure what everyone's plans are, if some are traveling, taking off work, etc...

A huge thank you to Rachel for being such a fighter, for never giving up, and for starting this thread for all of us to come together. In your search for answers you have helped us all. I am eternally grateful.

To everyone here, thanks for sharing your personal stories and your advice, your time, your support, your kindness. Being a part of this "team", this unique, diverse, circle of friends has absolutely changed my life.

I love you all

Yeah, what she said!

If it weren't for all of you, I don't know that I'd even be on track for finding out what's wrong.

[AndreaB]

I've started reading about coinfections and it seems key that they are identified and, it appears, treated before the Lyme is. Stephen Buhner says the problem with ABX is that it doesn't treat the coinfections which may be why those doing only ABX don't get better.

Thanks for posting that Rinne. I was wondering about that. Looking forward to your post later today after you talk to Hoffman.

Oh god I read alittle on coinfections- its so much to digest and the sad thing is we cannot rely on doctors at all and have to do it all on our own. What do we pay them so much money for again?

Miamia

I'm beginning to wonder that too. Mitch just told me he wants to transfer to the doctor we saw for our intolerance testing. I've got to call and see if he is even taking full care clients anymore. He's older and may be getting away from that.

A huge thank you to Rachel for being such a fighter, for never giving up, and for starting this thread for all of us to come together. In your search for answers you have helped us all. I am eternally grateful.

To everyone here, thanks for sharing your personal stories and your advice, your time, your support, your kindness. Being a part of this "team", this unique, diverse, circle of friends has absolutely changed my life.

I love you all

Julie,

You voice my sentiments too.

And I continue the fest.

It's Seth's 1 year birthday today! Already.

[CarlaB]

It's Seth's 1 year birthday today! Already.

Happy birthday!

That's why I have so many .... they're only a baby for a minute!!!! Oh, I can't wait to be a GRANDMA!!!! C'mon Morgan ... met any nice boys yet????

[AndreaB]

Oh, I can't wait to be a GRANDMA!!!! C'mon Morgan ... met any nice boys yet????

[dlp252]

I also want to thank everyone on this thread!!! For continually repeating to me what's been said MANY times before, for being patient with me, for allowing me to be an honorary lyme clan rachelville participant, for just being who you all are...thank you! Okay, I'm going to cry now.

Happy Birthday to Seth!!!!

[CarlaB]

I came across this information about mercury and Lyme which I found very interesting, here is a link:

Open Original Shared Link

When I was on antibiotics four years ago, I got severe joint pain in my left knee, so bad I couldn't bend it to sit down or walk down the stairs. I started an anti-candida diet, assuming candida got into my joint because it can happen and it made sense since I had been on such a long dose. I also started taking MSM. This article says MSM can do more damage than good with mercury ....

Oh, the pieces are really coming together!!!!

[dlp252]

This article says MSM can do more damage than good with mercury ....

That would be why I felt worse after my doctor put me on MSM!

[CarlaB]

That would be why I felt worse after my doctor put me on MSM!

How's the glutathione working for you? I remember when I had my fillings out, the glutathione was like an energy booster. I'm beginning to think it would be a good thing for me to take now!!!

[jerseyangel]

I'm seeing a new doctor next Wednesday--the 29th. I spoke to the nurse there and told her of my Celiac and food intolerances and asked point blank if they were familiar and were treating others with the same types of things. She was very reassuring--but we shall see....I plan to ask about Lyme, as a lot of my issues match the symptoms lists. I remember brushing a tick off my arm about 12 years ago. I also used to get such weakness in my legs while on antibiotics that I couldn't walk for very long. It's a long shot, in my case--but given Miamia's intolerances as well as Laura's--I should look into this. It's been 18 months gluten-free, and though I'm better in some ways, I'm more sensitive in others

~~~~~~~

I want to echo Julie's sentiments. I am so grateful for all of you here--and for letting me be a part of this wonderful group. You are just as important to me as if I saw you once a week, or lived down the street from you. The bunch of us--I don't think it's an accident that we found each other. To me, this is the very definition of friendship. I don't know of anywhere else I can go at any hour of the day or night to get encouragement, medical advice, laughter, or to just know that someone is listening and truly understanding. Can't even put a price on that last one!

I hope all of you have a wonderful, Happy Thanksgiving!

[CarlaB]

I want to echo Julie's sentiments. I am so grateful for all of you here--and for letting me be a part of this wonderful group. You are just as important to me as if I saw you once a week, or lived down the street from you. The bunch of us--I don't think it's an accident that we found each other. To me, this is the very definition of friendship. I don't know of anywhere else I can go at any hour of the day or night to get encouragement, medical advice, laughter, or to just know that someone is listening and truly understanding. Can't even put a price on that last one!

I hope all of you have a wonderful, Happy Thanksgiving!

You guys are great! You are like a greeting card ... I read what you write and think, "Yeah, I feel that way, too!" I just can't put it into words. I do think of all of you often and when I talk to you to other people, it's hard to explain how I can feel that you are friends since we've never met in person ... yet we have met ... we have shared thoughts close to our hearts, which is what has made us friends.

I see Richard, he'll be breaking up this love-fest soon with some jokes!!

[jerseyangel]

Actually, the theme from the show "Cheers" comes to mind when I think of this thread--

Making your way in the world today

Takes everything you've got;

Taking a break from all your worries

Sure would help a lot.

Wouldn't you like to get away?

All those night when you've got no lights,

The check is in the mail;

And your little angel

Hung the cat up by it's tail;

And your third fiance didn't show;

Sometimes you want to go

Where everybody knows your name,

And they're always glad you came;

You want to be where you can see,

Our troubles are all the same;

You want to be where everybody knows your name.

Roll out of bed, Mr. Coffee's dead;

The morning's looking bright;

And your shrink ran off to Europe,

And didn't even write;

And your husband wants to be a girl;

Be glad there's one place in the world

Where everybody knows your name,

And they're always glad you came;

You want to go where people know,

People are all the same;

You want to go where everybody knows your name.

Where everybody knows your name,

And they're always glad you came;

Where everybody knows your name,

And they're always glad you came;

~~~~~~~

I guess that sums it up pretty well--hope you remember the tune

[rinne]

Since this is the week of giving thanks I wanted to post something in our OMG thread to you all. This is early but I'm not sure what everyone's plans are, if some are traveling, taking off work, etc...

A huge thank you to Rachel for being such a fighter, for never giving up, and for starting this thread for all of us to come together. In your search for answers you have helped us all. I am eternally grateful.

To everyone here, thanks for sharing your personal stories and your advice, your time, your support, your kindness. Being a part of this "team", this unique, diverse, circle of friends has absolutely changed my life.

I love you all

Well said Julie, you too.

Happy birthday!

That's why I have so many .... they're only a baby for a minute!!!! Oh, I can't wait to be a GRANDMA!!!! C'mon Morgan ... met any nice boys yet????

Yes, a Happy Birthday to Seth, will we see a birthday party avatar?

Morgan, I think you should probably look for someone with twins in their family, it is obvious your mom is not going to be satisfied with just one.

Yesterday was the due date for my son and his wife's baby, I am beyond excited about this. I'll be flying out to Vancouver to spend some time with them once the baby arrives.

I also want to thank everyone on this thread!!! For continually repeating to me what's been said MANY times before, for being patient with me, for allowing me to be an honorary lyme clan rachelville participant, for just being who you all are...thank you! Okay, I'm going to cry now.

I'm concerned you might not be so "honorary".

Another sauna this morning and it seemed like there was more sweat than before, did you have this experience Carla?

I continue to be astonished at what is being accomplished here, I don't have the words to describe how I feel about it except to say that for me Rachelville is just the most ordinary place - friends, laughter, kindness, scientificness and at the very same time it is beyond extraordinary - sisters separated at birth , a magical weaving of our intentions and a fierce force for wellness in the world.

:wub:

[AndreaB]

I also want to thank everyone on this thread!!! For continually repeating to me what's been said MANY times before, for being patient with me, for allowing me to be an honorary lyme clan rachelville participant, for just being who you all are...thank you! Okay, I'm going to cry now.

Here's a tissue Donna.

This article says MSM can do more damage than good with mercury ....

Oh, the pieces are really coming together!!!!

Can't wait to get your results. Looks like a lot of us are going to be getting a different kind a christmas gift this year.

That would be why I felt worse after my doctor put me on MSM!

When was this?

I plan to ask about Lyme, as a lot of my issues match the symptoms lists. I remember brushing a tick off my arm about 12 years ago. I also used to get such weakness in my legs while on antibiotics that I couldn't walk for very long. It's a long shot, in my case--but given Miamia's intolerances as well as Laura's--I should look into this. It's been 18 months gluten-free, and though I'm better in some ways, I'm more sensitive in others

I think this is a very good idea. I know you've talked about your hubby being treated for lyme.....

With your additional info it is plausible.

And I agree. Patti is a good writer too. I agree with your sentiments too. I always check my email and will come on here if I see posts have been made here. Sometimes I'm a day late and a dollar short though.

[dlp252]

How's the glutathione working for you? I remember when I had my fillings out, the glutathione was like an energy booster. I'm beginning to think it would be a good thing for me to take now!!!

I actually haven't started on that yet...I've been adding the NUMEROUS supplements the new doctors gave me very slowly before I try anything else new. Right now I'm reacting to something and not sure what. I "think" one of the supplements they have me on has glutathione, but probably not as much as I need.

I'm seeing a new doctor next Wednesday--the 29th. I spoke to the nurse there and told her of my Celiac and food intolerances and asked point blank if they were familiar and were treating others with the same types of things. She was very reassuring--but we shall see....I plan to ask about Lyme, as a lot of my issues match the symptoms lists. I remember brushing a tick off my arm about 12 years ago. I also used to get such weakness in my legs while on antibiotics that I couldn't walk for very long. It's a long shot, in my case--but given Miamia's intolerances as well as Laura's--I should look into this. It's been 18 months gluten-free, and though I'm better in some ways, I'm more sensitive in others

I have that muscle weakness too and mostly in my legs, but arms as well. I've never been able to explain it and always thought I was out of shape even though I work out nearly every day I can.

I guess that sums it up pretty well--hope you remember the tune

I do, it's perfect, lol!

I'm concerned you might not be so "honorary".

I know it seems so, but I just find it hard to believe it could be true, lol.

[CarlaB]

Morgan, I think you should probably look for someone with twins in their family, it is obvious your mom is not going to be satisfied with just one.

Another sauna this morning and it seemed like there was more sweat than before, did you have this experience Carla?

Morgan knows that already.

I sweat a ton the very first time, but I believe I've read that sometimes you don't sweat as much till you've taken a couple ... so I think it's normal. At first, I sweat a lot, then I didn't sweat as much, now I'm sweating a lot again.

The great thing after reading all this mercury stuff is that it helps to eliminate the mercury through your skin. At a slow rate, which I'm reading is good. We all want it to work too quickly.

Donna, I think as I reintroduce the supplements I will add glutathione and alpha lipoic acid, both are supposed to be good mercury eliminators, but gentle .... I remember feeling better every time I took glutathione. I want to see if it makes a difference. I had mercury show up in my hair analysis ... it was a low level, but that's common in someone very toxic with it. The Lyme/mercury article said that if you're treating Lyme, even with salt/c, that you can be mobilizing the mercury ... so it's probably a good idea for me to add those supplements soon to see if it makes a difference at all in my energy.

[dlp252]

When was this?

Let's see, he retired in June of 2005, so probably about 2 years ago...fortunately for me I HATED the taste of the stuff...he wouldn't let me get capsules, I had to have the powder and it tasted AWFUL, so I didn't take it for long...but while I did I think I even felt worse than I did before...same with the colloidal silver he had me try. I loved this doctor...he's the one who at least tried to think outside the box as far as what it could be, but he retired before we got around to everything.

Donna, I think as I reintroduce the supplements I will add glutathione and alpha lipoic acid, both are supposed to be good mercury eliminators, but gentle .... I remember feeling better every time I took glutathione. I want to see if it makes a difference. I had mercury show up in my hair analysis ... it was a low level, but that's common in someone very toxic with it. The Lyme/mercury article said that if you're treating Lyme, even with salt/c, that you can be mobilizing the mercury ... so it's probably a good idea for me to add those supplements soon to see if it makes a difference at all in my energy.

I think I'll add it in anyway. I think what I think is a reaction might be from the pectasol...that is supposed to bind with the mercury and help it be eliminated...I've been having D which is really light in color, so maybe that's it. I haven't been tested by anyone yet for metals...I may ask the HN doctors about that when I have my next consult, which should be to discuss the results of my stool tests.

[AndreaB]

Sometimes you want to go

Where everybody knows your name,

And they're always glad you came;

You want to be where you can see,

Our troubles are all the same;

You want to be where everybody knows your name.

Be glad there's one place in the world

Where everybody knows your name,

And they're always glad you came;

You want to go where people know,

People are all the same;

You want to go where everybody knows your name.

Good song reference Patti.

Yes, a Happy Birthday to Seth, will we see a birthday party avatar?

Haven't taken any pictures. Did take some video and will continue to do so. Mitch already called to talk to Seth.....he won't be home til later tonight...hopefully before Seth goes to bed but he's not quite to his destination yet and it's a 5 hour return drive (without traffic). He'll have to go somewhere to pick up a load before returned to the yard.

Morgan, I think you should probably look for someone with twins in their family, it is obvious your mom is not going to be satisfied with just one.

Love ya Morgan.

Yesterday was the due date for my son and his wife's baby, I am beyond excited about this. I'll be flying out to Vancouver to spend some time with them once the baby arrives.

Oh, has exciting! Do they know what they are having or is it a surprise. Two of mine were surprises. Seth wasn't.

I'm concerned you might not be so "honorary".

I'm suspicious of Donna as well.

Why do I think I may be the only one of the regular posters that doesn't have lyme.

I was going through the scrapbook my mom made for me looking for a picture of us around deer when we were little. I don't have it. We used to go boating everywhere for little overnight trips to places. We slept in the boat.

[CarlaB]

Why do I think I may be the only one of the regular posters that doesn't have lyme.

Maybe you were brought here for a different reason ... maybe you will need to know in the future what a bulls-eye rash looks like ... hopefully so you can help someone -- a complete stranger rather than a friend of family member -- get treatment right away in an attempt to avoid chronic lyme.

Does anyone ever have a deja vu? I have been having so many of them lately it's annoying ...

[Rachel--24]

"The follow-up test for Lyme disease, if the above is negative, is the Lyme Dot Blot/PCR Panel - #875. This panel looks for pieces of the bacteria in urine as well as DNA of B. burgdorferi in the urine. Most physicians use an antibiotic challenge to make the test more sensitive. The antibiotic protocol, as well as the general instructions can be found in the urine testing kit available from the laboratory. You may also call IGeneX for a copy of the protocol.

The combination of all of the above tests provides higher than 90% sensitivity and better than 95% specificity. Remember that Lyme disease is a clinical diagnosis and testing can support your clinical presentation"

Maybe this is what I should ask for- but antibiotics make me so nervous- becasue of candida and leaky gut- UGH this is all so confusing!!!

Antibiotics make me nervous too.

I havent read alot about the urine test....just that its not an antibody tests...it looks for the actual bacteria itself. I think with this test there are often false negatives but a positive would definately give you an answer.

Heres some info about testing for everyone....

WHAT TESTS ARE AVAILABLE?

A variety of tests is available. Many doctors who are unfamiliar with Lyme disease may just use the Lyme test available in their local laboratory. In many cases this is the Lyme ELISA or IFA, often called "Titer Test.” These tests measure a patient's antibody, IgM and/or IgG, in response to exposure to the Lyme bacteria. By today's standards, these tests are not very sensitive. IGeneX, Inc. will only perform the ELISA test when Western Blots are ordered in conjunction.

The Western Blot tests (IgG and/or IgM) are much more sensitive and specific than the above ELISA tests. With the Western blot, the laboratory can visualize the exact antibodies you are making to the Lyme bacteria. In some cases the laboratory may be able to say that your “picture of Lyme antibodies” is consistent with early disease or with persistent/ recurrent disease. Not all patients have antibodies at all times when tested. Antibodies are more commonly detected within the first year after infection, although re-infection may cause a significant rebirth of antibodies. At most, only 70% of patients have antibodies early, and the presence of antibodies alone does not make a disease diagnosis.

The Lyme Dot Blot Assay (LDA) looks for the presence of pieces of the Lyme bacteria in urine. The LDA has been useful in some patients with clinical symptoms and clinical history consistent with Lyme disease, who consistently test negative with antibody tests for Lyme disease.

The PCR (Polymerase Chain Reaction) test detects the presence of the DNA of the Lyme bacteria. PCR tests have more sensitivity early in the disease before patients have received antibiotics. The best specimen to test has not been defined. The test is usually performed on whole blood, serum, urine, CSF, or miscellaneous fluids/tissues.

WHICH TEST IS BEST?

Lyme Disease is very complicated to diagnose because:

Lyme bacteria are not always detectable in the whole blood, even in active disease. The bacteria like to hide.

Every patient responds differently to an infection.

Antibodies may only be present for a short time.

For patients with clinical symptoms of Lyme Disease who test negative by the IgG or IgM Western Blot, the Whole Blood PCR or the LDA/Multiplex PCR Panel on urine may be appropriate. There are physician-developed antibiotic protocols to enhance the sensitivity of the LDA. In addition, there seems to be increased sensitivity of this test during the start of menses.

Lyme Disease Tests

IgG/IgM and IgM Antibody Serology

IgG Western Blot and IgM Western Blot

Lyme Dot Blot Assay (LDA)

Reverse Western Blot (Confirmation test for LDA)

Multiplex PCR for urine, whole blood, serum, CSF, miscellaneous (ex: Skin biopsy, breast milk, semen)

In addition to Lyme Disease, a co-infection may be suspected for Babesiosis, Ehrlichiosis, or Bartonella. We offer tests for these other tick-borne illnesses. The tests are IFA (fluorescent antibody) or direct tests by PCR. In the case of Babesia, FISH (fluorescent in situ hybridization) is also available. The FISH test detects the ribosomal RNA of the Babesia parasites directly on air-dried blood smears. This test is highly specific for Babesia, unlike the standard test, the geimsa stain smear, which cannot differentiate between malaria parasites and Babesia

I've started reading about coinfections and it seems key that they are identified and, it appears, treated before the Lyme is. Stephen Buhner says the problem with ABX is that it doesn't treat the coinfections which may be why those doing only ABX don't get better.

Co-infections will respond to antibiotics but the not the same ones that are used for Lyme. I agree that this is why alot of people dont get better. Different infections respond to different treatment. One infection may be causing alot of illness while another infection may not doing much harm at all. Its important to get a whole picture....or as much as possible.

A huge thank you to Rachel for being such a fighter, for never giving up, and for starting this thread for all of us to come together. In your search for answers you have helped us all. I am eternally grateful.

To everyone here, thanks for sharing your personal stories and your advice, your time, your support, your kindness. Being a part of this "team", this unique, diverse, circle of friends has absolutely changed my life.

I love you all

Thnaks Julie....all I did was start the thread...you guys are the ones who've helped make it such a wonderful and supportive place to come to each day. Without all of you I dont know that I would have had as much strength. Thanks to each and every one of you for being so supportive and helping me get through the last 8 months. You've made my world a much more pleasant place.....nobody could understand it all like you guys can.

Oh...thanks for *listening* and for putting up with all of my countless "theories" and endless postings of scientificness.

Julie...you said it perfectly....we are like a "team".

It's Seth's 1 year birthday today!

YAY!!!! Happy Birthday little guy!!

No wonder he was so happy and chatty last night....he knew it was almost his special day.

This article says MSM can do more damage than good with mercury ....

Yeah...MSM is bad for anyone with mercury toxicity. I read that like 3 years ago and never took any...good thing!

I want to echo Julie's sentiments. I am so grateful for all of you here--and for letting me be a part of this wonderful group. You are just as important to me as if I saw you once a week, or lived down the street from you. The bunch of us--I don't think it's an accident that we found each other. To me, this is the very definition of friendship. I don't know of anywhere else I can go at any hour of the day or night to get encouragement, medical advice, laughter, or to just know that someone is listening and truly understanding. Can't even put a price on that last one!

I hope all of you have a wonderful, Happy Thanksgiving!

Well said Patti....my sentiments exactly.

I feel the same way....that we didnt meet by accident. I've felt that way for months now.....I've also felt that we would all get answers at some point.....like its part of the reason we all ended up here.

I agree....you cant put a price on the understanding, encouragement or the support. I think of all of you as my "real life" friends and am so happy and thankful to have met you guys.

[dlp252]

Does anyone ever have a deja vu? I have been having so many of them lately it's annoying ...

I have them once in a while...it seems like they used to happen more often than they do now though.

[CarlaB]

I have them once in a while...it seems like they used to happen more often than they do now though.

I already forgot I posted that. I had just had another one ... I've had a cluster of them the past few days. Sometimes they're so long I can "almost" know what's coming next ... like watching a movie I've seen before, but forgotten the outcome of. It's so strange, I don't particularly like this.

[Rachel--24]

I'm concerned you might not be so "honorary".

Rinne....you know you wanna say it...

Two words..... Lyme Clan

[jerseyangel]

Why do I think I may be the only one of the regular posters that doesn't have lyme.

It's probably a long shot for me, like I said. But we're all here for a reason--we all just seem to "fit". That dosen't mean we all have to have the exact same illness. There's a lot more to us than that

And may I wish little Seth a very Happy Birthday!