Omg...i Might Be On To Something

[Rachel--24]

It still hasnt sunk in all the way that I have a name that I can call this thing.

The Dr. had said that I deserve these answers after waiting 4 years. Thats when he said he was gonna find out about mercury toxicity for me as well. This guy has saved my life and I'm grateful for the HN docs sending me to him.

I scheduled my appt. for the electronic testing....forgot to ask if its Bioscan .....anyways its set for next Tues. I think the Dr. said I'll get the results right away.

Rinne, as far as pain goes....when the docs would ask me to put it on a scale of 1-10....I would always say 15. Before I changed my diet I used to take Hydrocodone (pain med) at least 2 times a day....EVERYDAY. I also slept more hours of the day than I was awake...I only would wake up long enough to cry and maybe eat something. I hardly ever left the house. This is when my brain felt like it wasnt working at all either. I was just a mess...I contibute some of it to mercury though. I guess I'll find out soon enough.

I havent taken a single pain med since the day I changed my diet. The diet was really my turning point until now....actually testing positive for Lyme. When I took meds I had pain in every area of my body....now its primarily in my neck, back, head and some days my pelvic area. I think besides the diet changes the other thing I'm so glad I did for myself was get all the amalgam out.

Donna...I hope the HN docs can help you. I think my problems were too complex for them...I'm glad they didnt hold me back and instead had me call this other Dr.....I'm so thankful for that.

[rinne]

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??

No, Amy Tan wrote "The Joy Luck Club" but now I am curious, could there be two authors with Lyme?

I am so glad that you finally found a doctor that is helping and I know that your diagnosis is going to help many people because a whole lot people are going to be properly tested now.

I think that the current western diet of highly processed food laced with additives ramps up the Lyme bacteria, if one was paranoid you might even think that our diet was designed to do that. I've read that one aspect of Lyme is paranoia. LOL Now why on earth would people who have spent years being ill going from one doctor to another, being told they can find nothing wrong with them and then discovering that the tests they have had are inadequate to diagnose what is wrong be paranoid.

[Rachel--24]

No, Amy Tan wrote "The Joy Luck Club" but now I am curious, could there be two authors with Lyme?

Rebecca Wells.....author of Ya-Ya Sisterhood has Lyme Disease...I just looked it up.

Open Original Shared Link

[happygirl]

x

[jerseyangel]

I can only imagine what is written on some of my records....They just don't get how all encompassing this can be for people.

[Rachel--24]

I am so glad that you finally found a doctor that is helping and I know that your diagnosis is going to help many people because a whole lot people are going to be properly tested now.

Rinne...I hope so. I would be happy if one person could benefit from my story but now that I know the "mystery" illness is actually Lyme....I'm thinking alot of people could benefit from having the right Dr. and the right testing. Lyme is *real*...I was beginning to wonder if anyone would ever find out what strange thing had taken over my body.

I guess it wasnt an alien baby afterall.

[Guest Robbin]

No, Amy Tan wrote "The Joy Luck Club" but now I am curious, could there be two authors with Lyme?

I found when I was doing some searching, that there are quite a few authors with Lyme and there was a symposium a year or so ago of writers with Lyme. I forget (brainfogged) what it was called or even where it was held. My head is spinning from all this.

When I read about the symptoms of Lyme, I have nearly every one of them. When I think that I may have passed this in utero and in breast feeding to my sons, it makes me scared and quite frankly freaked out. I told rinne that is the WORST part for me. It is bad enough to possibly have it, but for my kids too-it is making me crazy. I have found a support group in the area where I live and am going to try to find a dr. through them.

Zack and Nick have both had tick bites and were on antibiotics, I only hope that it was enough. Zack gets the bullseye looking welts from mosquitoes and we have to really be careful about keeping repellent on since we all seem to attract the insects. The repellents with DEET however, make us both get headaches and nausea. I worry since we are in a high lyme area with a lot of deer coming into the yard. Northern Va is an extremely high lyme area and I read last night that one county near mine has 20% higher rate than other areas. I love the outdoors, but how do you go about a normal life worrying about this? I mean, you almost have to wear a space suit to be completely covered. I had one on the scalp once in PA, so what can you do about your head?

I know, I haven't even had the tests done, but I really know in my heart, and by the reaction I am getting from the salt/vit c, that this is what I have. Tailz in her panic has probably helped more people than she realizes. I can understand the panic and anxiety over this now.

Thank you all for sharing your stories, because if I didn't know anyone else who has these symptoms, I would probably just be on antidepressants and believing that I am a hypochondriac. I thank you all for sharing. This is like living somewhere in another dimension sometimes hovering between a haze of sickness and fog and on the other side -wellness and vibrant life.

Sorry for the long rant .

[rinne]

Not a rant at all, made me cry.

[dlp252]

Gosh, GREAT news Laura!!!! Fantatsic about the job...I can hardly even imagine that...God is definitely good!

Medical records, lol. I really hate to think what is written on some of mine. I'm sure my old doctor wrote something juicy on my last visit to her last year, oh wait, she couldn't write anything because SHE DIDN'T HAVE MY CHART IN FRONT OF HER as she told me my blood pressure reading seemed fine...as I'm dizzy, nauseated and ready to pass out and my reading is down to 90/60! Darned doctors, lol.

Rachel, I'm thinking the HN doctors will help a lot actually...at the very least they will probably do a little more thorough testing, which will help me to know what it isn't.

Not a rant at all, made me cry.

Ditto!

Rinne...I hope so. I would be happy if one person could benefit from my story but now that I know the "mystery" illness is actually Lyme....I'm thinking alot of people could benefit from having the right Dr. and the right testing. Lyme is *real*...I was beginning to wonder if anyone would ever find out what strange thing had taken over my body.

I guess it wasnt an alien baby afterall.

I think we all have benefitted from your story, even if we don't all have Lyme, we can at least see that persistence DOES sometimes pay off and that eventually, the root cause CAN be found and it really ISN'T all in our heads! We all have our own form of alien baby floating around, lol.

[Guest Robbin]

I think we all have benefitted from your story, even if we don't all have Lyme, we can at least see that persistence DOES sometimes pay off and that eventually, the root cause CAN be found and it really ISN'T all in our heads! We all have our own form of alien baby floating around, lol.

It just occured to me, maybe we are all aliens ourselves, lol

[dlp252]

It just occured to me, maybe we are all aliens ourselves, lol

Hum, that WOULD explain a lot, lol.

[rinne]

Seriously, when I was in my thirties, on dark days I would tell my sweetie that when I reported back to the intergalactic counsel I would have to say that saving the human species was a questionable proposition. I would have no choice but to say that a dominant strain in humanity seemed intent not only on its' own destruction but the destruction of this great and marvelous blue and green jewel dancing in the universe.

Hi Julie

[dlp252]

Seriously, when I was in my thirties, on dark days I would tell my sweetie that when I reported back to the intergalactic counsel I would have to say that saving the human species was a questionable proposition. I would have no choice but to say that a dominant strain in humanity seemed intent not only on its' own destruction but the destruction of this great and marvelous blue and green jewel dancing in the universe.

I've always felt "different", lol.

Okay, Carla, I really do read your posts, really I do, but for some reason I have just glossed over the adrenal fatigue issue...I am so much on overload these days that it seems like I just can't handle anything else. I finally read your post on the adrenal fatigue thread, and went and looked at an adrenal fatigue site...well, gosh, I have all THOSE symptoms too, lol.

[rinne]

###

Laura, glad to give you a giggle.

Im working on material for my "sick comic" act.

I'm sure I fall into the "menopausal anxious woman category".

My time and energy is so precious to me that I won't waste any of my time with doctors who are unwilling to enter into a partnership in my health. You can assume by this that I have wasted my time in the past.

[CarlaB]

Okay, Carla, I really do read your posts, really I do, but for some reason I have just glossed over the adrenal fatigue issue...I am so much on overload these days that it seems like I just can't handle anything else. I finally read your post on the adrenal fatigue thread, and went and looked at an adrenal fatigue site...well, gosh, I have all THOSE symptoms too, lol.

LOL I think adrenal fatigue probably plays a part in the way all of us feel. I think that we all get worn down by whatever is causing our problems and building the body back up, including the adrenals, is something we all have to do, no matter what the root cause of our illness is. I know I am benefitting tremendously from addressing the adrenal fatigue in addition to the gluten intolerance. It's the right combination for me. I don't know how any of us could be this sick and not stress our bodies!!

[happygirl]

x

[jerseyangel]

See, I told you you'd find the answer

[dlp252]

LOL I think adrenal fatigue probably plays a part in the way all of us feel. I think that we all get worn down by whatever is causing our problems and building the body back up, including the adrenals, is something we all have to do, no matter what the root cause of our illness is. I know I am benefitting tremendously from addressing the adrenal fatigue in addition to the gluten intolerance. It's the right combination for me. I don't know how any of us could be this sick and not stress our bodies!!

I think this is exactly why the doctors at HN are going to be beneficial...I think they look at the whole picture and don't just try to treat the symptoms.

I FINALLY HAVE THE ANSWER! So, now what do we do about being aliens?

I say let's embrace that alienness and run with it, lol!

[rinne]

From the Rebecca Wells link:

Years went by in which I did not know what was wrong with me. I was told maybe I had a brain tumor, perhaps epilepsy, maybe I had dystonia, maybe if I only took the latest miracle anti-depressant that all my symptoms would magically disappear. (Pause very carefully if ANYone tells you that.)

In the last seven years, my symptoms have included severe respiratory infections, intense muscular skeletal pain, severe fatigue, Multi-Chemical Sensitivity (MCS), hunger for air, extreme sensitivity to light and sound, seizure-like events, and freezing hands and feet (probably due to peripheral neuropathy). Weakness in my lower limbs has been one of the most physically dangerous symptoms because it can -- and does -- lead to falling down.

I'm grateful to both Amy Tan and Rebecca Wells for speaking up.

Falling down has been a problem for me. Most recently I fell off my bike, it was bizarre, I was riding along, it was a beautiful day, I was grateful to be present and just enjoying all the spring sensations. As I crossed an intersection I slowed down to time my arrival at another crossing to avoid cars that I could see coming and then I saw the telephone pole about five feet in front of me and I knew I was going to ride straight into it and fall. I did and tried to land in a way that would cause the least pain but still I jarred my spine and coming out of it I was kind of woozy. I swear my first thought was, "who's in charge here?" Then I looked and saw a stone on the pavement and thought that I must have simply hit the stone but it doesn't ring true for me, I don't remember feeling a stone under the wheel. I think what happened was that I blacked out for just two or three seconds, perhaps I fell asleep, perhaps I had a seizure but the result is injury and Lyme loves injury. It is interesting how it we are woven deeper and deeper into pain by this disease.

I don't want this to be true for me, just as I don't want it to be true for anyone and especially those I love and are close to me. I just can't deny the reality of how sick I am, how many of my symptoms fit and a deep feeling that I have found one answer to my illness.

[dlp252]

I don't want this to be true for me, just as I don't want it to be true for anyone and especially those I love and are close to me. I just can't deny the reality of how sick I am, how many of my symptoms fit and a deep feeling that I have found one answer to my illness.

I am SOOO hoping that you have! I am trying to prepare a sort of medical history/list of symptoms for my appointment next week and holy heck, it's already 5 pages long!

[DingoGirl]

Dang....how could anyone with Lyme manage to write a book??? and BEST-SELLERS at that....

Aliens......yes, this is such a good answer! Single White Anxious Female Aliens! makes so much sense!

Did you see all those emoticons on one of Rachel's posts?? happy day.......

[happygirl]

x

[dlp252]

Aliens......yes, this is such a good answer! Single White Anxious Female Aliens! makes so much sense!

Hey, we are SWAFAs!

[Green12]

I can only imagine what is written on some of my records....They just don't get how all encompassing this can be for people.

They really don't. When I first got sick they were telling me it was all in my head. I was sent straight to therapy and was put on anti-depressants. I felt horrible about myself and they made me feel increasingly worse. Thankfully, I went in another direction and I found people to work with who validated my health issues and I never felt stronger when that happened.

[Rachel--24]

Wow...alot of posts today...

Then, it leads me to such sorrow, thinking of all of the people in this world who don't have the resources, don't have the time to get on the internet, don't read, don't stick up for themselves, don't ask questions, etc. etc. That breaks my heart more than anything---if it is this bad for US and we have a clue....how bad is it for everyone else, not only here in America, but around the world? (Yes, that is my "save the world" speech, but its true!)

Laura, I've had the same thoughts so many times in recent months. I dont know where I would be without the resources. Yes...I've always had the determination but how far would that take me without the resources??

There have to be a great deal of people suffering because they either dont have any access to information or they simply dont know that its out there. I think alot of people dont try to find the answers themselves...its really sad. Some people may just accept the various diagnoses they get from their doctors and think "thats just the way it is." They take medications, antidepressants and maybe just figure its part of growing old.

Actually....I was told the same thing. "You're getting older now Rachel...you're in your 30's....things are gonna happen...our bodies change...its normal to get aches and pains...to not remember things like you used to...we all lose hair now and then...blah blah blah

OMG....I heard that soooo many times....thank God I listened to myself.....followed my instincts and tuned all the non-believers out. There was a time when everyone told me to stay off the computer....listen to the doctors (they know it all)....dont believe what you read online....dont try to diagnose yourself....stop reading and filling your head with garbage...etc.

If I had listened to everyone around me....I think I might be dead now....seriously....this disease was making me suicidal....along with the doctors and the people who thought they knew what they were talking about.

I know that most people arent as pro-active as those of us who are here and searching....they dont know where to look and it scares me. I'm always thinking and worrying asbout those other people out there.