Omg...i Might Be On To Something

[Green12]

I guess it wasnt an alien baby afterall.

the alien baby

[Mtndog]

Hi Everyone- First of all big HUGS HUGS HUGS for everyone who needs them (a group hug would rock right now). laura- Your job sounds so great that they will work with you so you can have health insurance! Miamia- You will find out! Rinne- When I was being tested for everything, I kept telling everyone that I was convinced there was an alien in me sucking all the life and nutrients outof me!

I don't know how much of my story I've told in one place, but I want to write this down for people who aren't finding any answers yet- because you will. It's long so bear with me.

Honestly, i don't know when it started. I was always an anxious, sensitive kid with a very sensitive stomach.

My sophomore year in college, I threw up after every single meal. I finally got scoped and found ouot I had GERD. My GI actually accused me of "subconscious bulimia" does that even exist?

After my senior year in college (throughout which I was pretty depressed the whole year), I moved home to live with my parents. I started my new job and the night before I was aup all night shaking, sweating while waves of anxiety just rolled over me. I threw up in the car on the way to work- I couldn't even see straight because I was so anxious.

2 days later it wasn't getting any better so my mom took me to the psych ER. First I was diagnosed with "grief" then it was bipolar then it was cyclothymic depression, but no one would give me any medication. I went through an hour of therapy EVERY night after work (which my mom drove me to) for 6 weeks.

Finally, i saw a private psychiatrist who said I was the most depressed person he EVER evalauted. He put me on medication (which worked) but then it was arthritis, multiple ear infections, changing psych meds about 50 times because I "reacted to everything. I eventually ended up on a an anti-psychotic because it was the ONLY thing that helped my anxiety.

Both my doctor and therapist (who have been with me since I started in 1989) said they had NEVER seen a clearer case for biological depression.

I gained 60 pounds on the medication and ballooned to 200 pounds from 140 pounds in 6 months. i finally had to go off it because of side effects and I started to lose the weight. Then I just kept losing. I went from 220 lbs to under 120 in less than a year.

I was sick constantly- GI issues, fatigue (I would sleep 12 hours at night and then at least 4 more in the afternoon). At this point I was in grad school- barely remember it. Finally in january, I saw a new PCP who took one look at me and said Celiac's or thyroid. Tthyroid came back negative so I started researching celiac and went gluten-free.

To make a long story short, 2 Gi's tested me for EVERYTHING- All the hepatitises, AIDS, full body CT scan for tumors, tuberculosis. I can't even remember all the tests. I had my endo which showed nothing. I felt better gluten-free but still not great. I had my gall bladder removed and was diagnosed with fibromyalgia.

Finally (I still adore you for this Patti) patti helped me figure out that I couldn't eat legumes at all and the fibro pain went away 9except when I cheat and eat even a tiny bit of chocolate).

But that still wasn't the answer. By the end of this summer, I was vomiting every day again and had D constantly. They took me in for an emergency colonoscopy which showed NOTHING. I was fine

We had suspected our apartment for awhile (uhmm.. 3 years but we could never quite pinpoint it). My husband, after I barfed my guts out the night before we were supposed to leaving for vacation, looked at me and said, "we're outta here."

To make a long story short (which you really can't!) I've had the following diagnoses: GERD, bipolar, cyclothmia, Generalized anxiety disorder, major clinical depression, IBS, lactose intolerance, infertility, chronic ear infections. Uhmm... ther's probably more.

I'm finally starting to feel better- no gluten or legumes of course, but I can't tell you (actually it's you guys so I can ) how much crying I did. research. More crying.

Thanks to the people on this board and a smart PCP, I made it through. There were plenty of times I just wanted to lay down and sleep forver (or transplant my head on someone else's body). I managed to finish my coursework and my qualifying exam (it took me longer than most but WHO CARES????).

I honestly think that although the things making us sick may be different, the one thing that I have admired about EVERYONE on this thread, especially our president, is the LOVE< SUPPORT AND PERSISTENCE>

OK, gonna cry now, never wwritten the whole story out 9and that's the condensed version). HUGS AND LOVE to all of you, Bev

[DingoGirl]

maybe we should all write a book together:

"The Rachelville Chronicles, from Dairy to Lyme, Aliens to Auxigro: How to Get Yourself Off the Couch and Onto your JetSki"

[dlp252]

Thank you Bev!!! What a journey you have been through!

Okay, I'm feeling group huggy again! I may walk the halls until I find someone to hug!

[happygirl]

x

[Mtndog]

maybe we should all write a book together:

"The Rachelville Chronicles, from Dairy to Lyme, Aliens to Auxigro: How to Get Yourself Off the Couch and Onto your JetSki"

I LOVE IT! Since I'm the English chick, I'll be happy to be the editor.

[Green12]

maybe we should all write a book together:

"The Rachelville Chronicles, from Dairy to Lyme, Aliens to Auxigro: How to Get Yourself Off the Couch and Onto your JetSki"

Susie, you are the best!!

Beverly, hugs right back to you. Thanks for sharing your story I'm glad you made it through all of those dark times and are living in the light now.

[Rachel--24]

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.

HOLY COW....I've always wanted to know what the heck was written in my charts at Kaiser. I wonder how I can find out?? No matter what Dr. or specialist I saw....they all gave me the same exact speech and almost immediately after walking into the room. How could they all tell me I need a shrink after only spending less than 5 minutes with me??

Ummm...Dave if you're reading....dont bother putting your 2 cents in.

Seriously though....Why would an ear nose and throat doctor suggest I need to see a shrink when the purpose of my appt. was because of swollen glands and other ENT related symptoms. He never even *looked* at me...or my swollen glands!! It was the same with all these guys....they must have written some crazy stuff about me.

Oh...one time when I was really bad off I tried to get some help on the phone. I was talking to an alternative Dr. and she was giving me some suggestions on how to deal with Kaiser. She told me to write everything I was feeling on a piece of paper...all my symptoms and how I felt. She told me to give it to the Dr. and demand something be done about it. She said dont leave the office until they've done everything possible w/out brushing me off. She told me to make sure they sent me to more specialists.

I wrote everything down. I was barely functioning at the time and reacting to everything. On the paper I had written all my symptoms, all my aches and pains, how I was sensitive to foods and chemicals, I wrote how tired and weak I was...how I wanted to die because the pain was so great. I wrote that my mind wasnt working well and I couldnt remember things and I didnt want to live this way anymore. The paper was wet from my tears....all I did was cry back then.

OMG...I bet a million bucks they put that paper in my file....probably every doctor read it and figured I was out of my mind....even more so than they had previously thought!

[Green12]

OMG...I bet a million bucks they put that paper in my file....probably every doctor read it and figured I was out of my mind....even more so than they had previously thought!

They have hard evidence

[Rachel--24]

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.

OMG Robbin....reading everything you wrote brought back so much of my own feelings and fears. The most terrifying ones. I know exactly how you feel. I focus alot on diagnosis and recovery but the fear is still there....I just try to block it out. Sometimes I wake up with a jolt...almost like a little panic attack in my sleep. I know its happening because of all the worrying I hold inside and try not to think about. Even these last few days that I've been happy to know whats going on....I'm waking up with crazy thoughts in my head.

I cant imagine the fear you're living with about having possibly passed it to your kids. I will keep all of you in my prayers. I'm been thinking about this myself....will I ever be able to have children?? Is the possibility to pass this on always there....even after treatment?? I plan on asking my Dr. at my next appt.

Flys seem to be really attracted to me now when I work in the yard. Can it have something to do with this?? I could be overly worrying about stuff but I've thought about it before. I wondered if it was normal for flys to keep landing on me no matter how much I shoo them away. It could have been something that had always happened and I just never payed attention or analyzed so much. I'm worried if ticks will always find me and reinfect me. Somebody said they can sense it in someone with Lyme. I dont know if its true but it scares me.

I guess I will have to protect myself the best I can but I dont want to always live in fear. I wanna enjoy the things I've always loved to do....I cant imagine never going camping again...or going fishing or jetskiing at the lake. Life would not be as enjoyable to me and I think the fear alone can make me sicker.

Robbin...there is no way to take away the anxiety, worry and fear you're feeling while you wait to get this all figured out. I dont want to see you make yourself sicker from so much stress though. Everything is scary but there are also some stories out there that are really positive. People do get better. If you do have Lyme maybe you can get the kids tested....see if they've been exposed. If they are not having symptoms its very posssible they could be cured of it before it does make them sick. I think they will be fine though....they will be fine because you know what to look for....they have YOU watching over them, protecting them and if they ever showed any signs you would be right on top of it...they would never have to suffer the way we have.

[jerseyangel]

maybe we should all write a book together:

"The Rachelville Chronicles, from Dairy to Lyme, Aliens to Auxigro: How to Get Yourself Off the Couch and Onto your JetSki"

How perfect

Okay, I'm feeling group huggy again! I may walk the halls until I find someone to hug!

Me too

Bev--I know your story, but to read it all in one place like that was intense. I know it will be so helpful to others looking for answers.

I have a "special" place in my heart for ENT's--and that place is not a good one I was continually diagnosed with sinus infections--even though I had no nasal symptoms whatsoever! I was so sick with fever, anemia, nausea and dizziness that some days I could hardly hold my head up--and they kept giving me different antibiotics ( finally just prescribing them over the phone) and when none of them ever made a difference, steroid injections.

I would say--are you sure my sinuses are causing this? and they would say--oh yes, the mucus draining down your throat is making you sick to your stomach. Lord knows what they were writing on my chart by this time....

Sinus trouble--my foot! I've had 2 CAT scans in recent years, and my sinuses are just fine

Darn right we should write a book--only do you think anyone else would believe some of this stuff? All of our stories together would make for quite an eye-opening read

[Rachel--24]

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

Yeah Susan.....and did you seeeeee that I have a DIAGNOSIS in my signature now!! OMG....I HAVE A DIAGNOSIS!!

I was waiting for this for soooooo long...

[jerseyangel]

Yeah Susan.....and did you seeeeee that I have a DIAGNOSIS in my signature now!! OMG....I HAVE A DIAGNOSIS!!

I was waiting for this for soooooo long...

Ooh--I just noticed that!! Nice

[Rachel--24]

maybe we should all write a book together:

"The Rachelville Chronicles, from Dairy to Lyme, Aliens to Auxigro: How to Get Yourself Off the Couch and Onto your JetSki"

ROFLMAO!!!!

OMG Susan.....you just made me bust a gut!!

Thats hilarious!

Omg...cant stop laughing.....gotta go back to work..

[Fiddle-Faddle]

Bev, I'm just parachuting in here, I've missed most of the last 30-40 pages, just skimmed a few entries, and found your latest one. I am so shocked and horrified at all you've been through--and I couldn't figure out (my brain must be fogged)--what was the root cause of all those problems? You mentioned your apartment--was it mold?

[dlp252]

I have a "special" place in my heart for ENT's--and that place is not a good one I was continually diagnosed with sinus infections--even though I had no nasal symptoms whatsoever! I was so sick with fever, anemia, nausea and dizziness that some days I could hardly hold my head up--and they kept giving me different antibiotics ( finally just prescribing them over the phone) and when none of them ever made a difference, steroid injections.

I would say--are you sure my sinuses are causing this? and they would say--oh yes, the mucus draining down your throat is making you sick to your stomach. Lord knows what they were writing on my chart by this time....

Sinus trouble--my foot! I've had 2 CAT scans in recent years, and my sinuses are just fine

OMGOSH!!! This is EXACTLY what had been happening to me for the last almost 4 years!!!!! I never had the injections, but the antibiotics alone were enough to screw up my whole body...I took plenty of prednisone...also had 3 sinus scans...all of which showed nothing, and they said the same thing...the drainage down my throat and the fact that I was dizzy and had nausea led to the sinus infection diagnosis and I'd get more antibiotics. At first it was Augmentin 875, then it went up to the 1,000mg at the end (when we finally started to explore the dietary issues and before he retired) I was taking 4,000mg a DAY!!!!!! That is not an exhaggeration! He retired before we got around the gluten/casein issue, but I believe we would have gotten there eventually.

[jerseyangel]

OMGOSH!!! This is EXACTLY what had been happening to me for the last almost 4 years!!!!! I never had the injections, but the antibiotics alone were enough to screw up my whole body...I took plenty of prednisone...also had 3 sinus scans...all of which showed nothing, and they said the same thing...the drainage down my throat and the fact that I was dizzy and had nausea led to the sinus infection diagnosis and I'd get more antibiotics. At first it was Augmentin 875, then it went up to the 1,000mg at the end (when we finally started to explore the dietary issues and before he retired) I was taking 4,000mg a DAY!!!!!! That is not an exhaggeration! He retired before we got around the gluten/casein issue, but I believe we would have gotten there eventually.

Oh Donna--this is terrible. I think that because I didn't have chronic D at the time (that happened the last year or so before dx), they didn't think it was actually stomach related. I can see that now, of course.

Because of all of the antibiotics I took, I'm allergic to all but one strain. My present doctor won't put me on anything unless it's absolutely necessary so I don't become allergic to that. When the oral prednisone wasn't enough to give relief, they went to the Decadron--which is given only every 6 weeks. I'm sure some of that is still in me, doing gosh knows what!

Again, looking back, it does figure that the only drug that ever did any good were the steriods. Obviously, it was calming the inflammation in my intestine. Too bad no one put 2 and 2 together back then....

I got tears in my eyes when I read that this happened to you, too.

[Mtndog]

Bev, I'm just parachuting in here, I've missed most of the last 30-40 pages, just skimmed a few entries, and found your latest one. I am so shocked and horrified at all you've been through--and I couldn't figure out (my brain must be fogged)--what was the root cause of all those problems? You mentioned your apartment--was it mold?

Happy parachute landing

Basically, the root cause was that I am gluten and legume intolerant but I believe that the mold in my place was preventing me from getting better. Every time i left I felt much better, but I always chocked it up to being out of the house and distracted.

I think the depression, infections, GERD, anxiety and everything else was celiac related for me. I amm still on meds for depression and anxiety and probably always will be as with each episode your chances of having another one increase trifold (I've already had three major so my chance of having another is 99%) BUT since going gluten free I have been able to cut out some medications and cut way down on others.

AND RACHEL HAS A DIAGNOSIS!!!!!!!!!!!!!!!!! WOO HOOOO

[miamia]

Hi Everyone- First of all big HUGS HUGS HUGS for everyone who needs them (a group hug would rock right now). laura- Your job sounds so great that they will work with you so you can have health insurance! Miamia- You will find out! Rinne- When I was being tested for everything, I kept telling everyone that I was convinced there was an alien in me sucking all the life and nutrients outof me!

I don't know how much of my story I've told in one place, but I want to write this down for people who aren't finding any answers yet- because you will. It's long so bear with me.

Honestly, i don't know when it started. I was always an anxious, sensitive kid with a very sensitive stomach.

My sophomore year in college, I threw up after every single meal. I finally got scoped and found ouot I had GERD. My GI actually accused me of "subconscious bulimia" does that even exist?

After my senior year in college (throughout which I was pretty depressed the whole year), I moved home to live with my parents. I started my new job and the night before I was aup all night shaking, sweating while waves of anxiety just rolled over me. I threw up in the car on the way to work- I couldn't even see straight because I was so anxious.

2 days later it wasn't getting any better so my mom took me to the psych ER. First I was diagnosed with "grief" then it was bipolar then it was cyclothymic depression, but no one would give me any medication. I went through an hour of therapy EVERY night after work (which my mom drove me to) for 6 weeks.

Finally, i saw a private psychiatrist who said I was the most depressed person he EVER evalauted. He put me on medication (which worked) but then it was arthritis, multiple ear infections, changing psych meds about 50 times because I "reacted to everything. I eventually ended up on a an anti-psychotic because it was the ONLY thing that helped my anxiety.

Both my doctor and therapist (who have been with me since I started in 1989) said they had NEVER seen a clearer case for biological depression.

I gained 60 pounds on the medication and ballooned to 200 pounds from 140 pounds in 6 months. i finally had to go off it because of side effects and I started to lose the weight. Then I just kept losing. I went from 220 lbs to under 120 in less than a year.

I was sick constantly- GI issues, fatigue (I would sleep 12 hours at night and then at least 4 more in the afternoon). At this point I was in grad school- barely remember it. Finally in january, I saw a new PCP who took one look at me and said Celiac's or thyroid. Tthyroid came back negative so I started researching celiac and went gluten-free.

To make a long story short, 2 Gi's tested me for EVERYTHING- All the hepatitises, AIDS, full body CT scan for tumors, tuberculosis. I can't even remember all the tests. I had my endo which showed nothing. I felt better gluten-free but still not great. I had my gall bladder removed and was diagnosed with fibromyalgia.

Finally (I still adore you for this Patti) patti helped me figure out that I couldn't eat legumes at all and the fibro pain went away 9except when I cheat and eat even a tiny bit of chocolate).

But that still wasn't the answer. By the end of this summer, I was vomiting every day again and had D constantly. They took me in for an emergency colonoscopy which showed NOTHING. I was fine

We had suspected our apartment for awhile (uhmm.. 3 years but we could never quite pinpoint it). My husband, after I barfed my guts out the night before we were supposed to leaving for vacation, looked at me and said, "we're outta here."

To make a long story short (which you really can't!) I've had the following diagnoses: GERD, bipolar, cyclothmia, Generalized anxiety disorder, major clinical depression, IBS, lactose intolerance, infertility, chronic ear infections. Uhmm... ther's probably more.

I'm finally starting to feel better- no gluten or legumes of course, but I can't tell you (actually it's you guys so I can ) how much crying I did. research. More crying.

Thanks to the people on this board and a smart PCP, I made it through. There were plenty of times I just wanted to lay down and sleep forver (or transplant my head on someone else's body). I managed to finish my coursework and my qualifying exam (it took me longer than most but WHO CARES????).

I honestly think that although the things making us sick may be different, the one thing that I have admired about EVERYONE on this thread, especially our president, is the LOVE< SUPPORT AND PERSISTENCE>

OK, gonna cry now, never wwritten the whole story out 9and that's the condensed version). HUGS AND LOVE to all of you, Bev

Oh god sounds like ewe have ahd he same diagnosies. I ahve been wondering awhile about my apartment and mold issues. Did moving help you? Why was it you felt you needed to move?

Miamia

[dlp252]

Oh Donna--this is terrible. I think that because I didn't have chronic D at the time (that happened the last year or so before dx), they didn't think it was actually stomach related. I can see that now, of course.

Because of all of the antibiotics I took, I'm allergic to all but one strain. My present doctor won't put me on anything unless it's absolutely necessary so I don't become allergic to that. When the oral prednisone wasn't enough to give relief, they went to the Decadron--which is given only every 6 weeks. I'm sure some of that is still in me, doing gosh knows what!

Again, looking back, it does figure that the only drug that ever did any good were the steriods. Obviously, it was calming the inflammation in my intestine. Too bad no one put 2 and 2 together back then....

I got tears in my eyes when I read that this happened to you, too.

Yep, the prednisone was always what made me feel better, but truthfully I didn't always take it when they prescribed it...it make me bloat up something fierce...I'd gain a pound a day while on that stuff! This is one of the reasons why I was so sick last October. I got strep throat, and they wanted to prescribe augmentin, but I wouldn't let them...my ENT (the doctor who retired) had switched me to Tequin right before he retired, which also seemed to help...I kept trying to get the doctor I saw for the strep to give me Tequin, but she wouldn't do it because "oh that's too strong"...UM DUH, DID YOU NOT HEAR THAT I HAVE JUST TAKEN 4,000MG OF ANTIBIOTICS PER DAY AND IT DIDN'T HELP, lol. Anyway, the stuff she gave me didn't do anything and I had to repeat a course of antibiotics for the strep (augmentin--the doctor insisted, lol), which duh, didn't help, then I got an ear infection, then a sinus infection, then a cold! I was sick the whole month of October and part of November. I had to cancel a trip to Australia because of it, cuz I couldn't be on a plane for 18 hours with my head messed up like that! Grrr, lol.

[AndreaB]

I had some posts I wanted to respond to and for some reason couldn't.

Robbin,

Hugs to you and I say ditto to what Rachel said.

Bev,

Wow, you've been through a lot too. Glad to know that you've finally found some relief.

Rinne,

Was that you who posted about the bike fall. I hope you aren't hurt too bad. Hoping for some answers for you too when you go to the doctor.....is that next week.

Laura,

Glad to have you over here as well. I know you guys will find the answers.

Julie,

It's always good to see your smiling face......wait! It's not your smiling face anymore.....

Rachel,

Your diagnosis in you sig. Will be looking forward to your appointment next week.

Donna,

Hope you'll start getting some answers soon too. HUGS to you.

Patti,

Hope you are doing well. HUGS to you too.

Susan,

How did you appointment go.....was that last week?

Alison,

Good to see you parachute in once in awhile.

Did I miss anyone? I hope not.

Been a rough day so far and I haven't even been up long. Seth's schedule is so far out of wack. Talitha has been having major problems this morning. These are days I want to be an ostrich.

Love you guys.

[jerseyangel]

Yep, the prednisone was always what made me feel better, but truthfully I didn't always take it when they prescribed it...it make me bloat up something fierce...I'd gain a pound a day while on that stuff! This is one of the reasons why I was so sick last October. I got strep throat, and they wanted to prescribe augmentin, but I wouldn't let them...my ENT (the doctor who retired) had switched me to Tequin right before he retired, which also seemed to help...I kept trying to get the doctor I saw for the strep to give me Tequin, but she wouldn't do it because "oh that's too strong"...UM DUH, DID YOU NOT HEAR THAT I HAVE JUST TAKEN 4,000MG OF ANTIBIOTICS PER DAY AND IT DIDN'T HELP, lol. Anyway, the stuff she gave me didn't do anything and I had to repeat a course of antibiotics for the strep (augmentin--the doctor insisted, lol), which duh, didn't help, then I got an ear infection, then a sinus infection, then a cold! I was sick the whole month of October and part of November. I had to cancel a trip to Australia because of it, cuz I couldn't be on a plane for 18 hours with my head messed up like that! Grrr, lol.

The steroids would give me the worst moon face, but it was worth it

[dlp252]

The steroids would give me the worst moon face, but it was worth it

Moon body in my case, lol.

Hi Andrea! Sorry you're having a rough morning!

[loraleena]

Yeah Susan.....and did you seeeeee that I have a DIAGNOSIS in my signature now!! OMG....I HAVE A DIAGNOSIS!!

I was waiting for this for soooooo long...

Hi again Rachel.

I finally found your thread. I lost it for a while. I e-mailed last week. So you do have lyme? Wow. I'll let you know what my test say when I get them. What treatment are you getting.

Laura

[Green12]

Julie,

It's always good to see your smiling face......wait! It's not your smiling face anymore.....

Yes, it's my chunky chocolaty self you see now

Hope your day gets better, thinking of you