Omg...i Might Be On To Something

[AndreaB]

OMGosh I wish I could give you all a group hug...I'm feeling huggy this morning!

I love hugs! If I lived closer to you, I'd be over there real quick.

I don't usually go up to people and hug them though.....some people don't like hugs. Whenever we get together next year we can greet each other with a hug.

[jerseyangel]

In one of your first posts you wrote that you would do anything to feel better...you didnt even care what foods you had to cut out...just as long as it made you better. Thats something I must've said a million times and I know I would have never given up on something this important to me....I dont think you'll give up either. I think you'll figure it out and you'll get better....just like Patti said.

Look what I've had to go through....I've probably seen about 40 doctors, 2 years off work, a gazzilion tests, noone taking me serious...and NOW after four years.... I just find out that I "probably" have Lymes Disease. Its still not even confirmed!!

OMGosh I wish I could give you all a group hug...I'm feeling huggy this morning!

Laura, I just feel so badly for you!

Miamia, and Rinne, you too!

We are all going to get to the bottom of this! I was just thinking the other day that I used to have so much energy and used to really want to get out and do stuff, not so much any more! It's so much of an effort!

None of us are gonna give up At least we found each other, and I don't know about you all, but I've never had this kind of understanding (real understanding) or support.

I just had an emotional moment, and wanted to share

[AndreaB]

None of us are gonna give up At least we found each other, and I don't know about you all, but I've never had this kind of understanding (real understanding) or support.

I just had an emotional moment, and wanted to share

Thanks, Patti.

[Green12]

None of us are gonna give up At least we found each other, and I don't know about you all, but I've never had this kind of understanding (real understanding) or support.

I just had an emotional moment, and wanted to share

Well said Patti, and thanks so much for sharing

I'm glad we all gravitated towards each other here in the OMG thread and how wonderful that there has been so much caring, sharing, and support for each other. I know for me, there isn't anybody in my life, or anyone I know of, that has to deal with the stuff we all deal with. It's nice to know there is a place we can all come to

[happygirl]

x

[dlp252]

Oh Laura...praying that something good will come of all this for you! Your parents sound WONDERFUL!!! Mom is right...you really just need to take care of yourself, the other stuff can wait. Praying that the job will understand.

[happygirl]

x

[miamia]

I love hugs! If I lived closer to you, I'd be over there real quick.

I don't usually go up to people and hug them though.....some people don't like hugs. Whenever we get together next year we can greet each other with a hug.

ever since I got sick I have become so affectionate. I love hugs- they are such good therapy

[rinne]

Open Original Shared Link

She is fabulous.

Laura, I agree with Patti

In one of your first posts you wrote that you would do anything to feel better...you didnt even care what foods you had to cut out...just as long as it made you better. Thats something I must've said a million times and I know I would have never given up on something this important to me....I dont think you'll give up either. I think you'll figure it out and you'll get better....just like Patti said.

Yeah....I know what you mean.

I read thats its now the second most widespead infectious disease. Its only second to AIDS. I was thinking its very likely it could be spreading much faster than AIDS....just underdiagnosed. The test for AIDS arent questionable....they KNOW how to diagnose AIDS....its a whole other story with Lyme.

Look what I've had to go through....I've probably seen about 40 doctors, 2 years off work, a gazzilion tests, noone taking me serious...and NOW after four years.... I just find out that I "probably" have Lymes Disease. Its still not even confirmed!!

They tested me for AIDS....no problem...it was ruled out with the one bloodtest. I'm thinking Lyme has gotta be #1.

Laura, I think your determination to find out what is wrong and your willingness to change in order to get well will lead you in only positive directions. I know you are stressed about your new job but your health is so much more important, I hope you will make it a priority at this time.

I think what is so devasting about chronic undiagnosed illness is that each effort to find out what is wrong requires so much of one's energy and at sometime point we become exhausted and once exhausted it becomes very hard to fight for oneself. For me, salt has given me back my "fierce self". The doctor I am going to see told me that salt helps balance the ionic flow which supports the adrenals and that gives energy. I use organic himalayan salt and recommend it to everyone, though I am not a doctor, just try 1/4 teaspoon a day in a large glass of spring or filtered water. I am so convinced of its' incredible properties that I even figured out how much salt I would need if I was to live another 50 years.

Rachel, it is mind blowing to think of what you have gone through and the number of doctors you have seen, I wonder if we need further proof that there is something deeply wrong with the current system.

I came across an article about a man in his thirties diagnosed with Lyme, a brilliant scientist in his thirties, who committed suicide, I think he had Neurological Lyme but with my memory lapses I'm not sure. This disease is absolutely devasting people's lives and then people are made to feel that they are crazy because they are told over and over again that there is nothing wrong. How many people are becoming addicted to pain medication because of this? I can't get too angry anymore though because it makes me ill, I've decided that I have to get smarter and funnier.

I've been fantasizing about becoming a stand-up comic, I've only gotten as far as calling myself the "sick comic" though.

OMGosh I wish I could give you all a group hug...I'm feeling huggy this morning!

Laura, I just feel so badly for you!

Miamia, and Rinne, you too!

We are all going to get to the bottom of this! I was just thinking the other day that I used to have so much energy and used to really want to get out and do stuff, not so much any more! It's so much of an effort!

Hugs, right back at you.

None of us are gonna give up At least we found each other, and I don't know about you all, but I've never had this kind of understanding (real understanding) or support.

I just had an emotional moment, and wanted to share

Patti, hugs.

I feel like we are really on our own to figure this out and if we are fortunate enough to find a place like this then we have found support. I feel sad for those who don't know that we, not just we but all the support groups, are here. I am beyond grateful for this place, people think I am alone all day and should have visitors but visitors often exhaust me whereas here I am renewed and encouraged and supported.

Julie and Andrea thank you and hello to everyone.

Do you think we could really get it together to have a Rachelville event? Wouldn't that be incredible?

[miamia]

Well, today is my personal rock bottom, officially.

I talked to my parents today. I have decided not to start working at my new job, for the time being. I am waiting to hear back from them, but I'm hoping to take a month off, at least. It breaks my heart...I have been crying all day. Working is the last "normal" thing in my life (what else is normal in my life---I am 25 and this is happening to me!)

My dad talked to the head at Bethesda naval hospital. He recommended some doctors in the DC metro area. My mom is going to start calling around and trying to find someone who will work with me. She is also going to call the head at Bethesda and talk to him also. I can't go there anymore since I am no longer a dependent/not in school/married/etc. But, at least she can get some guidance. She is kind of taking over because she knows I have done everything I can and look where I am.

She is going to either come down tomorrow or Friday and just kind of move in with me, since I'm here alone (its actually their house that I'm living in, that they bought years ago when we were stationed here, and have rented it out to tenants over the years...we are the latest tenants:)) Thank god for my parents.

Eric is planning on coming up Sunday night after work and going to go back Monday afternoon (works Monday evening). So at least I'll get to see him.

The unpacking has virtually stopped. As my mom reminded me, its the least of my problems.

I really appreciate all the hugs and support. I never thought my life/health would spiral this out of control...but alas, it has, and here I am. I feel so much better knowing that yall are caring and care about how I am doing....I have been on this board for awhile (and read for months before I joined)....but only in recent months (and really, recent weeks) have I become really active and have gotten to know you all. I think I would have lost my mind if it weren't for individuals on here, and the "collective" group.

I am off for a quick trip to Whole Foods to see if I can find 'something' that I can eat that won't send me over the edge....

Thanks again, guys....

Laura xoxo

Laura-

I completly know how you feel- I am the same age as you. I have not even finished school becaus eI just got to sick. I was a straight a student and never had to ask my parents or anyone for financial help, I worked I went out and now I am completly reliant on emotional and financial support from others for nearly everything. And ironically I just got back from whole foods where I came back pretty much empty handed except for a piece of fish and a carrot juice. I hope you ahve better luck!!1

Miamia

[rinne]

Laura, just caught up on the thread and see that you have made some decisions, I know it must be difficult but now you can focus on your health. I'm so glad that you have such a wonderful husband and great parents.

I really appreciate all the hugs and support. I never thought my life/health would spiral this out of control...but alas, it has, and here I am. I feel so much better knowing that yall are caring and care about how I am doing....I have been on this board for awhile (and read for months before I joined)....but only in recent months (and really, recent weeks) have I become really active and have gotten to know you all. I think I would have lost my mind if it weren't for individuals on here, and the "collective" group.

Hugs.

[dlp252]

Do you think we could really get it together to have a Rachelville event? Wouldn't that be incredible?

It would be incredible. I have actually met some people in person that I met on a fitness website and it can be a lot of fun!

On a different note, I made my appointment with the HealthNow doctors! Finally! They think they can help me, lol. I gave whomever answered the phone a list of the biggest concerns right now for me. By-the-way, they asked who referred me so I said my friend Rachel online, lol. Anyway, I see them next week...hope I didn't make it for the same day as my dental appointment, lol. Dang, I think I might have!

[jerseyangel]

It would be incredible. I have actually met some people in person that I met on a fitness website and it can be a lot of fun!

On a different note, I made my appointment with the HealthNow doctors! Finally! They think they can help me, lol. I gave whomever answered the phone a list of the biggest concerns right now for me. By-the-way, they asked who referred me so I said my friend Rachel online, lol. Anyway, I see them next week...hope I didn't make it for the same day as my dental appointment, lol. Dang, I think I might have!

Donna--I'm excited for you!

It would be a dream come true to actually be able to meet each other I'd love that!

[CarlaB]

Laura, I'm sorry you're doing so badly that you can't start your new job. It's smart to take this time off to just heal. All you can do till you find out more about what's causing all this is gets lots of rest, eat right, and do light exercise (walking, stretching, yoga) if you feel up to it.

Did you ever see that integrative medicine doc you were talking about? I was sure he'd be able to help you. You've been under a lot of stress lately, even good stress is still stress. I'm sure this is contributing to how you are feeling.

Take it easy, and rest. I still have boxes, too. I can tell you, I've been here since June, the boxes are still there. They won't go anywhere!!

[jerseyangel]

Laura,

I just read your latest post, I must have missed it. My heart absolutely goes out to you

I actually had to leave the same job twice because of this illness--so while I'm incredibly sad for you, I'm also just so angry that this happens. It's not fair.

Thank goodness that you have such wonderful parents--lean on them now, let them help you. I'm glad that your husband will also be able to come for a visit.

Take care, sweet girl

[AndreaB]

I have been blessed with a caring and loving husband and caring and loving parents......so even when things "suck," I always have them!

xoxo

Laura,

That is so nice that you have support all around you. Cyber support is good and sometime all that is available. Consider yourself double blessed.

I hope your job will understand. You do need to rest and take care of yourself. Please keep us posted.

ever since I got sick I have become so affectionate. I love hugs- they are such good therapy

Yes they are! I used to know a sort of poem that went with hugs.....actually, I think it was a hug card I was given. We need so many hugs a day for maintenance and between 7-12 (I think) to soar. Hugs really are a pick me up.

I've been kind of blah lately (mood wise). I'll take all the cyber hugs I can get.

[AndreaB]

I'm still planning on making my way down to California next year (Sacramento area or thereabouts). We would just need to figure out a place to meet. You California gals, I hope, would be able to swing meeting up. Anyone else, we all just need to figure out a good time.

I'd still have to have Seth with me which could be troublesome (maybe we sould wait 2 years, until he's weaned). I just want to meet up with whoever can arrange it. Otherwise, maybe I could bring the whole family down and us gals could go off for part of a day alone.

[happygirl]

x

[DingoGirl]

Open Original Shared Link

She is fabulous.

I came across an article about a man in his thirties diagnosed with Lyme, a brilliant scientist in his thirties, who committed suicide, I think he had Neurological Lyme but with my memory lapses I'm not sure. This disease is absolutely devasting people's lives and then people are made to feel that they are crazy because they are told over and over again that there is nothing wrong. How many people are becoming addicted to pain medication because of this? I can't get too angry anymore though because it makes me ill, I've decided that I have to get smarter and funnier.

Do you think we could really get it together to have a Rachelville event? Wouldn't that be incredible?

OMG here's what it says about Ruthie Foster:

Ruthie Foster’s songs are a remarkable hybrid of blues, gospel, roots and folk music

Um, hi, that's all I listen to, practically! Will definitely look into this....Rinne, do you ever listen to a Canadian band called The Be Good Tanyas? lots of folksy fun....

and, what is Neurological Lyme? scares me.....I have never had all the aches so would never think of Lyme for myself.....

Laura - - oh dear girl, hang inthere, you have tons of support, that's wonderful, and you can REST in it....it is so hard to go through this alone, but you are so not alone....you will be so strong again!

Donna - am anxious to hear about your appt.!

A get-together - wouldn't this be fab? Someone needs to provide funding so we can all go to that gorgeous mountain Dude Ranch in Wyoming in Celiac Week - - that would make me OUT OF MY MIND!!!

[AndreaB]

A get-together - wouldn't this be fab? Someone needs to provide funding so we can all go to that gorgeous mountain Dude Ranch in Wyoming in Celiac Week - - that would make me OUT OF MY MIND!!!

OOOOOHHHHHH, That Wyoming Ranch sounds fabulous. Unfortunately, I don't think they would serve sf/cf/l&bf on top of gluten free. Nice that they have a time period for gluten free people though.

[Rachel--24]

Just popping in to say hi.....yeah a rachelville get together....that would be soooo FUN!!

I'm feeling particularly "huggy" today too.

HUGS for everyone!!

I have no scientificness to share at the moment. Well actually I do but I'm running off to the movies now. Just got back from Whole Foods....got my ice cream and freshly popped popcorn. I'm all set to go!

Oh...a guy I used to work with stopped by my store to visit me....havent seen him in maybe 5 years. Anyways I told him about Lyme and he said he had just recently seen a big article about it in the paper. He said that it was getting popular.

I said "Popular???"

He said well...the article was saying how its starting to turn up everywhere and they're starting to be more aware of it and stuff like that. I said "Aware of it??"

Yeah...it only took 4 years, 40 doctors, a gazzilion tests and yeah...finally somebody (other than me) thought "Maybe this girl has Lyme Disease....maybe we should test her".

Ooooohhh...I see you Dave. I'm leaving right now......got sucked into the vortex again. Sorry.

[DingoGirl]

Ooooohhh...I see you Dave. I'm leaving right now......got sucked into the vortex again. Sorry.

aaaaaaaaaaaaagh!! busted by your movie date!! ha ha ha ha

Yeah....Lyme disease....POPULAR.....right.

[rinne]

Um, hi, that's all I listen to, practically! Will definitely look into this....Rinne, do you ever listen to a Canadian band called The Be Good Tanyas? lots of folksy fun....

and, what is Neurological Lyme? scares me.....I have never had all the aches so would never think of Lyme for myself.....

Open Original Shared Link

Like many chronic Lyme disease patients, as my symptoms mounted and a scattering of tests proved positive for an array of seemingly disparate conditions, I was referred to specialist after specialist, until I eventually had consulted ten and had taken countless lab tests. Because one repeated test revealed my blood sugar inexplicably dipped from time to time into the 20s and 30s without symptoms, I underwent a 48-hour fast. An MRI revealed 15 lesions in my frontal and parietal lobes, but my doctors felt that was normal for a person my age; I was 49 at the time. A CAT scan showed an incidentaloma on my adrenal gland, and that was where I hung my hopes, on a tiny benign tumor, which I could excise laparoscopically in hopes of being rid of my enervating symptoms. Instead, after beginning steroids, the bizarre symptoms worsened......

By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. When I wrote by hand, I reversed letters. When I spoke, I substituted words with like-sounding beginnings. I did not possess any of the skills necessary to write fiction, for I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery. Thus, my novel-in-progress lay abandoned between feeble attempts to resuscitate it. At times, when asked what I was writing, to my horror, I could not remember, and I would struggle over the next hour trying to recall the faintest details. I no longer dared get behind the wheel of a car, because I could not process fast enough when to depress the accelerator and when the brake. When I did venture out on foot, I would sometimes find myself lost in what I knew was a familiar place, my neighborhood of thirty years. Why didn’t that building on the corner look familiar? Why did everything seem as though it were the first time I had been there? I easily became lost in stores, hospitals, hotels, and I would panic, certain I was losing my mind and developing dementia related to early Alzheimer’s. My anxiety was a hundredfold of what was warranted, even in a post 9/11 era. Eventually, I could no longer leave my house alone. In any case, it hurt to walk too far. My muscles were stiff, my knees and hips ached. And I was almost too tired to care anymore.

Let me add here that my doctors were affiliated with major urban hospitals, were tops in their department, well-known, well respected. I liked them. I still do. Not once did they raise the idea that I was a hypochondriac. But they also did not raise the possibility of Lyme disease. Actually, one doctor had considered the possibility that I was infected with a spirochetal bacteria, and he gave me an ELISA test, which was negative -not for Lyme- but for syphilis.

I think it is really important to note that she had access to the best of medical care and testing and yet neither helped her, it was her own efforts on the internet that led her to a diagnosis.

Lyme is incredible in its' ability to adapt to each particular body with a host of symptoms that mimic other conditions, it is stealthy in its' destruction of our health. I am just learning but it seems to me there are at least three major themes of destruction: the pain body: the exhausted body and the mentally confused body. I think the pain body gets the Fibro diagnosis, the exhausted body gets the Chronic Fatique and the mentally confused body gets labelled Mentally Ill. I am sure this is all way too simple because Lyme really does present in so many different ways and it affects our whole system and so while I primarily have pain I also have major digestion issues. My friend with Lyme has digestion issues but exhaustion is her major challenge. I also have neurological things happening but they are nothing like Amy Tan's story. Perhaps in end if you live long enough without it being treated you have them all.

Susan if you like gospel, blues...you will love Ruthie Foster. I have heard the Be Good Tanyas and yes they are great fun to listen to.

Laura, it truly sounds as if you are surrounded by angels, I am so glad for you.

[rinne]

This is from the Amy Tan Link above, interesting information about the variations in results from different labs.

Let me hasten to add that not all chronic Lyme patients test positive on the Western Blot, at least not at the levels set by doctors who follow CDC surveillance criteria as diagnostic. As this booklet outlines, there is much more to be done before the tests can be considered reliable in every lab across the country. I know this firsthand because after I started antibiotic treatment I took part in a study in which my blood was sent out to five different labs for the ELISA and Western Blot. The results were all over the place -with Lyme-specific bands lighting up in one lab and not the other. There was almost not a single consistency. In addition, I had a negative ELISA test but a positive PCR, that is, I had DNA evidence of borrelia in my blood. And this was nine months after I had started antibiotic treatment.

[Rachel--24]

Rinne,

Is Amy Tan the author of Ya-Ya Sisterhood?

She has Lyme Disesase too....I came across her story one day....maybe it is the same woman??