My Story

[Guest guest]

Allie, Do you live near chicago? Which doctor did the dilations?

I think Notan is right about being able to get insurance.

I had a dilation done April 2010...and have been getting other treatments since

then and am doing very well.

Eva (from Chicagoland)

---

[Guest guest]

I do not live in Chicago. I live in central Illinois and drive 3 hours to go to

a specialist at Northwestern. He's the closest one to me. His name is

Kahrilas. He has no bedside manner but he is excellent at what he does. Glad to

hear you are doing well .

>

> Allie, Do you live near chicago? Which doctor did the dilations?

>

> I think Notan is right about being able to get insurance.

>

> I had a dilation done April 2010...and have been getting other treatments

since then and am doing very well.

>

> Eva (from Chicagoland)

>

> ---

>

[Guest guest]

Yep...that's what he did and I was pretty much pain free until about 4 years

ago. Even now, it's not as painful as my other knee and not daily. I KNOW I

have maltracking problems and the doc that was treating my knees had a

massive stroke...he's basically out of commission now. Back to square one

in finding a doc...I might go back to the doc that did the maquet...he's

about 2 hours away though. If my insurance will cover it, it would be worth

it.

Joi

Re: My Story

Carol:

You can Google up information about just about every procedure and treatment

available:

http://www.kneeguru.co.uk/KNEEnotes/maquet-procedure

There is an amazing amount of information out there. A lot of crap too!

Hahaha... But you'll learn to distinguish the good from the bad.

Keep doing your homework,

Doug

> >

> > > 14 yrs ago I was diagnosed with cmp. I did'ent take it seriously and I

> > asked dr what could I do to stop it and he said don't run anymore.

That's

> > when I invented dancing on the treadmill a good core excercise and

started

> > biking long distances. I had pain after that slowly got worse. I grew up

> > with rocky and jane fonda idols. You know no pain no gain and I was

willing

> > to pay the price. I'm a nurse and stand and push large people on carts

in

> > and out every half hr for a 10 hrs shift. finally pain started spreading

> > from the knees into the thighs and down into the calf, after a day at

work

> > my legs were so painfull I would just lay on the couch. I could only

work

> > and that was painfull. Finally got someone to do an mri showing grade

II/III

> > with some bone marrow changes. I have tryed synvisc inj's and steriod

inj's.

> > Saw 2 surgeons that really did'ent want to do surgery and gave me zip

info

> > and pain meds and a glad to meet you goodbye.....

> > >

> > > I've searched the web and finally found your web site. I coulden't

even

> > get a doc to do a scope? I'm so frustrated. I changed my job to one that

> > sits and walks. I can't even ride a bike. Being on my feet for 4hrs at a

> > time is all I can tolerate and I can't tolerate heels at all. I'm

gaining wt

> > and self concept is wearing away like whats left of my pattella. The

worst

> > part is not knowing where I'm going cause of lack of info. I feel like

all

> > my self discipline in staying fit has been rewarded with a big splap in

the

> > face. Can anyone tell me what's down the road? I'm stuck here in the

pain

> > and living just to work. I need a 101 cpm from overuse. Carol

> > >

> > >

> >

> >

> >

> >

[Guest guest]

Dear Allie, Dr. Kahrilas did my dilation too. You are right about the bedside

manner but he is excellent. If you decide to consider surgery, see Dr. Patti at

Chicago University Hospital. I understand that he is the best. I would consult

with him and see what he says about the effectiveness of surgery. My GI doc was

suggesting surgery to me. I don't think that Dr. Kahrilas feels that surgery is

not effective.

I recommend that you check with the CHIP plan for insurance. Just tonight my

husband (a health insurance agent) was explaining that if you don't have

insurance and are consider uninsurable (been declined by an insurance company),

you can get CHIP from the State of Illinois. The way this works is that you pay

1/3, the State pays 1/3 and the insurance company pays 1/3. Your portion of the

premium for someone at your age could be around or about $400 a month.

By the way folks, in 20 states there is (and has been for a long time) insurance

such as the CHIP plan available for the uninsured.

Allie, I don't remember if you just can't afford to pay anything for insurance

or if you have been declined. But if I were you, I would find help. How about

a fundraiser in your church or other organization to help pay for your

insurance? Just long enough to get your procedure done. Or tell the doctor

your situation and may be they will find a way to do it for you.

Don't wait too long like I did and then I was totally depleted because I didn't

get enough liquids and nutrition. In the meantime, the best thing to do is to

drink nutrition pureed soups with lot of veggies and some meat. And drink

enough water and high protein drinks such as whey protein.

I'll be glad to help you...there are some other good docs in Chicago who do

surgery and dilations.

Eva

>

> I do not live in Chicago. I live in central Illinois and drive 3 hours to go

to a specialist at Northwestern. He's the closest one to me. His name is

Kahrilas. He has no bedside manner but he is excellent at what he does. Glad to

hear you are doing well .

>

>> >

>

[Guest guest]

Update, I'm going to see another surgeon that I found out understands cmp to

get an opinion. I " m stuck here.. can't stand on my feet for very long without

knee pain. I can't stay here voluntarily any more. I have to try to recoop as

much function as possible and I'm not gonna go forward until someone looks in

there to give me an exact diagnosis. I went to a footbal party yesterday

ND/Mich and had to look around for a chair like an invalid. I have to take the

risk of a scope gone wrong cause what have I got to lose?

And now I'm having heel pain esp when I wake up to put my foot down. I don't

have a clue what that means? It came to me about a week ago why I have this

damage. It was dancing on the treadmill. My nordic tract was stuck on an

incline. I did'ent even know it untill my grandson fell off of it and I closed

it up without deinclineing it cause I was angry that he was using it as a toy.

My nordic tract was a special one with a wood running bed to be easier on the

knees. When I deinclined it in the upright position it went flat. So for

years I had been twisting, hopping and everyother thing you can do with your

body dancing on a running inclined treadmill. When this thought came to me I

knew it was true and then a worst thought that I may have damaged my hip joints

also cause my hips were getting the same wear as my knees. And that would

explain why I have so much pain from my waist down. And that is why the first

knee surgeon rejected the diagnosis of cmp overuse cause I wasen't a marathon

runner. I have worked out this way at least 3or 4 times a week for years. Once

I even concidered marketing this as a new wt loss idea that use's your exsisting

gym equipment. Sure gald I did'ent pursue that.

I thought this dancing versus running was what I had to do to spare my knees.

It's a swaying twisting motion not a jumping motion and then pushing a heavy

cart with people on it around corners etc.. and standing for 10hrs at a time

probably explains overuse. I used my knee joints to hold my body weight at a

twisted inclined position over and over for years. It's probably amazing they

lasted this long. So anyone out there...cmp overuse can be defined another way

not just runners. I imagine hill climbers, socker, foot ball players any

activity that holds your body wt on your knee joint at a twisted position for

years might be damaged.

I'm still not past the greiving process I can't even dance on the ground

cause it flares up the pain and I am a danceaholic. I'll be the first one on

the dance floor without a partner even. I can dance myself sober. Once I'm on

the dance floor I hardly leave..I feel it's like playing my body to the music

like an instrument and life's to short to let embarassment make you sit it out.

I used to think what would happen to me when I got really old and put somewhere

like a small living environment like old people usually do and I thought if I

had a music source and even a small space I could dance my way to death and

still feel alive and happy...When I was down to only bike riding with ipod in my

ears I could peddel to the beat and I was pretty happy with that and now that's

gone too. I made Burn My Soles cd's for my exercise friends. Fast, heavy on

the beat electronica. Now When I hear it I start to get hyper and wanting to

move fast and I remember I can't. I dare you to listen to Fuego by Pitbull and

not move anything That's not on any of my burn series tho. If you listen to

infected mushroom's hits like becoming insane, cities of the future and the

Chemical Brothers: Surface To Air, Hoops, Got Glint? etc that's the style. The

music made you want to push yourself. It disconnected the part of your brain

that said: Stop this is to hard. When the endorphine high kicked in with the

music I think it's as good as any outside chemical high. I'm starting to feel

like a junkie. I want that again.. And so you see why I would risk a bad scope

or bad surgery in an attempt to get back there in the music. Hell I'd even

agree to amputation of a finger or toe to get my life back. How do I get over

this? I tryed swimming but you can't listen to music and fat old ladies

pretending to exercise bobbing and gossiping were in my way. I got so mad at my

body that I fed it only cake, 4 helpings, instead of supper one day. I said you

won.. You want to be fat and dimpled and slow so eat this. I'm listening to get

yourself high by the chemical brothers and I want to move, cry and eat cake all

at the same time.

I know some of you moved past this and maybe I will someday? I guess I'll

greive untill I know that there is no hope of getting my knees to be my friend

again. Carol

> > >

> > > > 14 yrs ago I was diagnosed with cmp. I did'ent take it seriously and I

> > > asked dr what could I do to stop it and he said don't run anymore.

> That's

> > > when I invented dancing on the treadmill a good core excercise and

> started

> > > biking long distances. I had pain after that slowly got worse. I grew up

> > > with rocky and jane fonda idols. You know no pain no gain and I was

> willing

> > > to pay the price. I'm a nurse and stand and push large people on carts

> in

> > > and out every half hr for a 10 hrs shift. finally pain started spreading

> > > from the knees into the thighs and down into the calf, after a day at

> work

> > > my legs were so painfull I would just lay on the couch. I could only

> work

> > > and that was painfull. Finally got someone to do an mri showing grade

> II/III

> > > with some bone marrow changes. I have tryed synvisc inj's and steriod

> inj's.

> > > Saw 2 surgeons that really did'ent want to do surgery and gave me zip

> info

> > > and pain meds and a glad to meet you goodbye.....

> > > >

> > > > I've searched the web and finally found your web site. I coulden't

> even

> > > get a doc to do a scope? I'm so frustrated. I changed my job to one that

> > > sits and walks. I can't even ride a bike. Being on my feet for 4hrs at a

> > > time is all I can tolerate and I can't tolerate heels at all. I'm

> gaining wt

> > > and self concept is wearing away like whats left of my pattella. The

> worst

> > > part is not knowing where I'm going cause of lack of info. I feel like

> all

> > > my self discipline in staying fit has been rewarded with a big splap in

> the

> > > face. Can anyone tell me what's down the road? I'm stuck here in the

> pain

> > > and living just to work. I need a 101 cpm from overuse. Carol

> > > >

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

Yo Ian

How are you ? ,good I hope

All is bearable here, I used an infared sauna today for 30 mins at 115 degrees

, I felt ok , but made my back itch . Maybe if I soak in borax after the sauna

it will kill what it must of strried up .

I have found a cotton tshirt with borax water on it 1/4 cup borax per 1 gallon

for the body & 1.5 tbls borax & 1 gal of water for the face applied to the skin

fo 30 mins draws stuff out like a high powered magnet. One tme I used 1/4 cup

borax & 1 gal of water on a rag on my face which had no marks or cuts on it &

it sucked the blood thru 3-4 old mite holes & left the area like an bleeding

abrasion . It all healed fast , but freaked me out for a day or so.

Do you have any new approaches , Steve at safe solutions always tells me to use

the poultice wit borax to ge tthe deep ones . (a compress rag with borax water

on it )

God bless you Ian,

Bill

On Mon Aug 23rd, 2010 1:47 AM EDT tenchantre@... wrote:

>To answer your question, I used a version of the " Rainbow " FIR unit. As I

mentioned, it gave me a week of relief. In 6 months I've used it an average of

6 hours a night, and sometimes as long as 30 hours straight.

>

>It's totally painless, though cumbersome to keep stable on an air matress. I'd

never recommend it to anyone. I plan to purchase an MPS pad when I have the

cash. Almost everything I've had success with has lasted about a week, so the

FIR is no surprise. I'm sticking with the Staninger protocol till the end.

We'll see if I'm any better then.

>

>The Arm & Hammer powdered detergent didn't do anything for me.

Environmentally, a heavy mopping of Borax and constant Hydrogen Peroxide in a

cool mist vaporizer seem to work the best. Of course, sometimes nothing works,

no matter what.

>

>My doctor is a big believer in chelation. It's about $200 a pop, and I'm

ALWAYS broke, but I may consider it. Really wish I had some rich relatives!

>

>Thank you for writing.

>

>

>> >> >

>> >> >> From: Zoe <zoe_z3@...>

>> >> >> Subject: Re: cured of bird

>> mites!

>> >> >> bird mites

>> >> >> Date: Saturday, August 21, 2010, 1:30 AM

>> >> >> How did this start for you. 

>> >> >>

>> >> >>

>> >> >> >

>> >> >> > > > > > >

>> >> >> >

>> >> >> > > > > > > I have been

>> cured of

>> >> my bird

>> >> >> mites by using a zapper!!  I got it

>> >> >> >

>> >> >> > > just

>> >> >> >

>> >> >> > > > > > 2 days ago and

>> used it

>> >> 3-4 times a

>> >> >> day....3rd day bird mites

>> >> >> >

>> >> >> > > dead...even

>> >> >> >

>> >> >> > > > > > the eggs!! 

>> They had

>> >> burrowed

>> >> >> down in the creases between my legs

>> >> >> >

>> >> >> > > and on

>> >> >> >

>> >> >> > > > > > top of my

>> private area. I

>> >> had

>> >> >> tried just about everything...went

>> >> >> >

>> >> >> > > to dr.

>> >> >> >

>> >> >> > > > > > and was

>> misdiagnosed.

>> >> Praise

>> >> >> God!!

>> >> >> >

>> >> >> > > > > > >

>> >> >> >

>> >> >> > > > > >

>> >> >> >

>> >> >> > > > >

>> >> >> >

>> >> >> > > >

>> >> >> >

>> >> >> > >

>> >> >> >

>> >> >>

>> >> >>

>> >> >>

>> >> >>

>> >> >> ------------------------------------

>> >> >>

>> >> >>

[Guest guest]

What a story! I would only trust my story to a LLMD, Lyme Literate MD - they can grasp what is going on... it is the same old story with PCP's most of the time. I think has a good doctor, but not sure where you live or where she lives. It is good that you didn't have to stay for too long. Phew!From: "whatstheuse2" <terelynjon@...>bird mites Sent: Friday, September 23, 2011 8:15:31 AMSubject: My story

Hi, Just wanted to tell you that I went to my PCP last Wed. for my Valium refill, told him my story and my sister-in-law who was present was telling him about how horrible this has been for me for the past 4-5 months, how I ripped out all my carpet, have been throwing things out of my house, and spent thousands of dollars, etc., etc. Anyway he consulted with another PCP in there and told me that he wanted me to have a psych consult in the ER. I thought I was going to get a medical consult as well, so I agreed. I got there and they hospitalized me for 5 long days in the psych ward. It was awful, they told me I was delusional with somatic complaints and prescribed Risperdal. I took 2 of the pills and then had to put them under my tongue and pretend to swallow them. I came back home on Monday, so I'm getting close to square 1 now. I'm planning to move to my mother's house sometime soon. It is hard holding on. Sometimes I wonder if things will ever get better. I had a Lyme's test at Patient First, but took Invermectin the day before -- the results were negative, so I don't know if that was right. I don't get any bites -- there are just microscopic things that I can't see but I can feel them. Cleaning does help. My doctor said he had a patient who had a brain tumor and she felt things biting her. He wanted me to have some medical workup, but they never did that. I caught a cold after coming home, but feeling better with that today.

[Guest guest]

P.S. If you ever do go to a Lyme Literate MD, be sure to be re-tested for Lyme and co-infections, like Bartonella. Bart is notorious for causing mental issues, skin issues, and the list goes on and on as to what both conditions can do. Things like Ivermectin or antibiotics before a test can alter the result of the testing. I think labs recommend a couple of weeks off the drug before you are tested.L.From: "whatstheuse2" <terelynjon@...>bird mites Sent: Friday, September 23, 2011 8:15:31 AMSubject: My story

Hi, Just wanted to tell you that I went to my PCP last Wed. for my Valium refill, told him my story and my sister-in-law who was present was telling him about how horrible this has been for me for the past 4-5 months, how I ripped out all my carpet, have been throwing things out of my house, and spent thousands of dollars, etc., etc. Anyway he consulted with another PCP in there and told me that he wanted me to have a psych consult in the ER. I thought I was going to get a medical consult as well, so I agreed. I got there and they hospitalized me for 5 long days in the psych ward. It was awful, they told me I was delusional with somatic complaints and prescribed Risperdal. I took 2 of the pills and then had to put them under my tongue and pretend to swallow them. I came back home on Monday, so I'm getting close to square 1 now. I'm planning to move to my mother's house sometime soon. It is hard holding on. Sometimes I wonder if things will ever get better. I had a Lyme's test at Patient First, but took Invermectin the day before -- the results were negative, so I don't know if that was right. I don't get any bites -- there are just microscopic things that I can't see but I can feel them. Cleaning does help. My doctor said he had a patient who had a brain tumor and she felt things biting her. He wanted me to have some medical workup, but they never did that. I caught a cold after coming home, but feeling better with that today.

[Guest guest]

Thanks.  I live in Richmond, VA.  One more day in there would have been too much as they were sure I was imaging all of it.  I decided just to stop telling my story to MDs and try to work it out on my own.  I have some ear buzzing today -- took some clove last night and some black walnut and wormwood today. 

On Fri, Sep 23, 2011 at 11:37 AM, <Goldstein@...> wrote:

 

P.S.  If you ever do go to a Lyme Literate MD, be sure to be re-tested for Lyme and co-infections, like Bartonella.  Bart is notorious for causing mental issues, skin issues, and the list goes on and on as to what both conditions can do.  Things like Ivermectin or antibiotics before a test can alter the result of the testing.  I think labs recommend a couple of weeks off the drug before you are tested.

L.

From: " whatstheuse2 " <terelynjon@...>bird mites

Sent: Friday, September 23, 2011 8:15:31 AMSubject: My story 

Hi, Just wanted to tell you that I went to my PCP last Wed. for my Valium refill, told him my story and my sister-in-law who was present was telling him about how horrible this has been for me for the past 4-5 months, how I ripped out all my carpet, have been throwing things out of my house, and spent thousands of dollars, etc., etc. Anyway he consulted with another PCP in there and told me that he wanted me to have a psych consult in the ER. I thought I was going to get a medical consult as well, so I agreed. I got there and they hospitalized me for 5 long days in the psych ward. It was awful, they told me I was delusional with somatic complaints and prescribed Risperdal. I took 2 of the pills and then had to put them under my tongue and pretend to swallow them. I came back home on Monday, so I'm getting close to square 1 now. I'm planning to move to my mother's house sometime soon. It is hard holding on. Sometimes I wonder if things will ever get better. I had a Lyme's test at Patient First, but took Invermectin the day before -- the results were negative, so I don't know if that was right. I don't get any bites -- there are just microscopic things that I can't see but I can feel them. Cleaning does help. My doctor said he had a patient who had a brain tumor and she felt things biting her. He wanted me to have some medical workup, but they never did that. I caught a cold after coming home, but feeling better with that today.

[Guest guest]

I'm sorry about the experience, Whatstheuse. I think the hardest part of this condition is when no one believes you. My break through was when I finally found how to collect and identify the bugs on me. My first attempt failed as the doctor I took them too smashed my samples with sticky tape. After that, I placed them on the slides and showed her myself. My Infectious Disease Doctor saw them, too. I got my samples by take a large bath with one cup of Lysol Complete Clean. After submerging with a breathing straw for 30 minutes and combing my hair under water, I had these little black specks all over the bottom of the tub. After draining the water, I used a small stick to get them and put them in a container. I hope you can collect your specimens soon.

Love and light,

.

From: whatstheuse2 <terelynjon@...>Subject: My storybird mites Date: Friday, September 23, 2011, 3:15 PM

Hi, Just wanted to tell you that I went to my PCP last Wed. for my Valium refill, told him my story and my sister-in-law who was present was telling him about how horrible this has been for me for the past 4-5 months, how I ripped out all my carpet, have been throwing things out of my house, and spent thousands of dollars, etc., etc. Anyway he consulted with another PCP in there and told me that he wanted me to have a psych consult in the ER. I thought I was going to get a medical consult as well, so I agreed. I got there and they hospitalized me for 5 long days in the psych ward. It was awful, they told me I was delusional with somatic complaints and prescribed Risperdal. I took 2 of the pills and then had to put them under my tongue and pretend to swallow them. I came back home on Monday, so I'm getting close to square 1 now. I'm planning to move to my mother's house sometime soon. It is hard holding on. Sometimes I wonder if things will ever get

better. I had a Lyme's test at Patient First, but took Invermectin the day before -- the results were negative, so I don't know if that was right. I don't get any bites -- there are just microscopic things that I can't see but I can feel them. Cleaning does help. My doctor said he had a patient who had a brain tumor and she felt things biting her. He wanted me to have some medical workup, but they never did that. I caught a cold after coming home, but feeling better with that today.

[Guest guest]

Yes, I did not have any specimens with me. I later took them to the hospital, but a nurse told me that they would not be able to identify them and to send them to the state or something. In retrospect, I know at that point they had already made up their minds that I was delusional and needed psych meds, etc. It was so crazy. My life has been too crazy lately since this all began. Oh well, it is rainy here today and I have had a few bites but they are like tiny, tiny pin prick bites on my legs. It is hard going through this. I cleaned a little this morning which helped.

On , Benton <sarahbenton48@...> wrote:

> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  

> > > > > > > > > > > > > > > > > > > > > I'm sorry about the experience, Whatstheuse.  I think the hardest part of this condition is when no one believes you.  My break through was when I finally found how to collect and identify the bugs on me.  My first attempt failed  as the doctor I took them too smashed my samples with sticky tape.  After that, I placed them on the slides and showed her myself.  My Infectious Disease Doctor saw them, too.  I got my samples by take a large bath with one cup of Lysol Complete Clean.  After submerging with a breathing straw for 30 minutes and combing my hair under water, I had these little black specks all over the bottom of the tub.  After draining the water, I used a small stick to get them and put them in a container.  I hope you can collect your specimens soon.  > > > Love and light,

> > > .  

>

> > > > > From: whatstheuse2 terelynjon@...>

> Subject: My story

> bird mites

> Date: Friday, September 23, 2011, 3:15 PM

> > > >   > > > > Hi, Just wanted to tell you that I went to my PCP last Wed. for my Valium refill, told him my story and my sister-in-law who was present was telling him about how horrible this has been for me for the past 4-5 months, how I ripped out all my carpet, have been throwing things out of my house, and spent thousands of dollars, etc., etc. Anyway he consulted with another PCP in there and told me that he wanted me to have a psych consult in the ER. I thought I was going to get a medical consult as well, so I agreed. I got there and they hospitalized me for 5 long days in the psych ward. It was awful, they told me I was delusional with somatic complaints and prescribed Risperdal. I took 2 of the pills and then had to put them under my tongue and pretend to swallow them. I came back home on Monday, so I'm getting close to square 1 now. I'm planning to move to my mother's house sometime soon. It is hard holding on. Sometimes I wonder if things will ever get

> > better. I had a Lyme's test at Patient First, but took Invermectin the day before -- the results were negative, so I don't know if that was right. I don't get any bites -- there are just microscopic things that I can't see but I can feel them. Cleaning does help. My doctor said he had a patient who had a brain tumor and she felt things biting her. He wanted me to have some medical workup, but they never did that. I caught a cold after coming home, but feeling better with that today. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

[Guest guest]

THis is just so awful, getting sent to the psych ward for mites. I am not surprised, they almost did that with me too, but my whole family had bites, so I succeeded in at least not getting sent to the pshychic clinic, even if that was a suggestion from one dr.Hang in there, I hope things calm down for you.KRCeciliaFrom: whatstheuse2 <terelynjon@...>bird mites Sent: Friday, September 23, 2011 5:15 PMSubject: My story

Hi, Just wanted to tell you that I went to my PCP last Wed. for my Valium refill, told him my story and my sister-in-law who was present was telling him about how horrible this has been for me for the past 4-5 months, how I ripped out all my carpet, have been throwing things out of my house, and spent thousands of dollars, etc., etc. Anyway he consulted with another PCP in there and told me that he wanted me to have a psych consult in the ER. I thought I was going to get a medical consult as well, so I agreed. I got there and they hospitalized me for 5 long days in the psych ward. It was awful, they told me I was delusional with somatic complaints and prescribed Risperdal. I took 2 of the pills and then had to put them under my tongue and pretend to swallow them. I came back home on Monday, so I'm getting close to square 1 now. I'm planning to move to my mother's house sometime soon. It is hard holding on. Sometimes I wonder if things

will ever get better. I had a Lyme's test at Patient First, but took Invermectin the day before -- the results were negative, so I don't know if that was right. I don't get any bites -- there are just microscopic things that I can't see but I can feel them. Cleaning does help. My doctor said he had a patient who had a brain tumor and she felt things biting her. He wanted me to have some medical workup, but they never did that. I caught a cold after coming home, but feeling better with that today.

[Guest guest]

A negative Lyme test means nothing. I had the same experience in the psychiatric ward at the hospital. Then I found a Lyme literate doc, started treatment and everything has been improving, it's been 2 yrs. On Sep 23, 2011, at 10:15 AM, whatstheuse2 <terelynjon@...> wrote:

Hi, Just wanted to tell you that I went to my PCP last Wed. for my Valium refill, told him my story and my sister-in-law who was present was telling him about how horrible this has been for me for the past 4-5 months, how I ripped out all my carpet, have been throwing things out of my house, and spent thousands of dollars, etc., etc. Anyway he consulted with another PCP in there and told me that he wanted me to have a psych consult in the ER. I thought I was going to get a medical consult as well, so I agreed. I got there and they hospitalized me for 5 long days in the psych ward. It was awful, they told me I was delusional with somatic complaints and prescribed Risperdal. I took 2 of the pills and then had to put them under my tongue and pretend to swallow them. I came back home on Monday, so I'm getting close to square 1 now. I'm planning to move to my mother's house sometime soon. It is hard holding on. Sometimes I wonder if things will ever get better. I had a

Lyme's test at Patient First, but took Invermectin the day before -- the results were negative, so I don't know if that was right. I don't get any bites -- there are just microscopic things that I can't see but I can feel them. Cleaning does help. My doctor said he had a patient who had a brain tumor and she felt things biting her. He wanted me to have some medical workup, but they never did that. I caught a cold after coming home, but feeling better with that today.

[Guest guest]

Abx won't effect a Lyme test, they actually help your body produce the antibodies which make the test positive. Lyme is a clinical diagnoses, coinfections even more so, the Lyme Western Blot is for surveillance according to the CDC. On Sep 23, 2011, at 10:37 AM, Goldstein@... wrote:

P.S. If you ever do go to a Lyme Literate MD, be sure to be re-tested for Lyme and co-infections, like Bartonella. Bart is notorious for causing mental issues, skin issues, and the list goes on and on as to what both conditions can do. Things like Ivermectin or antibiotics before a test can alter the result of the testing. I think labs recommend a couple of weeks off the drug before you are tested.L.From: "whatstheuse2" <terelynjon@...>bird mites Sent: Friday, September 23, 2011 8:15:31 AMSubject: My story

Hi, Just wanted to tell you that I went to my PCP last Wed. for my Valium refill, told him my story and my sister-in-law who was present was telling him about how horrible this has been for me for the past 4-5 months, how I ripped out all my carpet, have been throwing things out of my house, and spent thousands of dollars, etc., etc. Anyway he consulted with another PCP in there and told me that he wanted me to have a psych consult in the ER. I thought I was going to get a medical consult as well, so I agreed. I got there and they hospitalized me for 5 long days in the psych ward. It was awful, they told me I was delusional with somatic complaints and prescribed Risperdal. I took 2 of the pills and then had to put them under my tongue and pretend to swallow them. I came back home on Monday, so I'm getting close to square 1 now. I'm planning to move to my mother's house sometime soon. It is hard holding on. Sometimes I wonder if things will ever get better. I had a

Lyme's test at Patient First, but took Invermectin the day before -- the results were negative, so I don't know if that was right. I don't get any bites -- there are just microscopic things that I can't see but I can feel them. Cleaning does help. My doctor said he had a patient who had a brain tumor and she felt things biting her. He wanted me to have some medical workup, but they never did that. I caught a cold after coming home, but feeling better with that today.

[Guest guest]

"There are no rules"

(I love recovery :-)

From: "tenchantre@..." <tenchantre@...>bird mites Sent: Monday, August 23, 2010 1:48 AMSubject: Re: Re: my story

Thanks for your support, Lynn. Religious belief would be a wonderful thing but I fear Morgellons has destroyed any hope in a caring god I might have once considered.> From: Lynn <torpedolynn@...>> Subject: Re: my story> bird mites > Date: Sunday, August 22, 2010, 4:17 AM> Keep on fighting Ian. You can win and> if I am wroung than you can get a new body in the next life.> I have alot of simular things with you. The stinging use

to> get my buttocks and than my back. I use to have fleas> and thought it was just the stages of fleas. I went through> bad depression when I went into Menopause and am Bi-Polar on> top of that. > > In Light Lynn> > > > > > > > > > > > > > >> > > > > > > > > > > > > I have been cured> of my bird> > > mites by using a zapper!!

I got it> > > > > > > > > just> > > > > > > > > > > > 2 days ago and used it> 3-4 times a> > > day....3rd day bird mites> > > > > > > > > dead...even> > > > > > > > > > > > the eggs!! They had> burrowed> > > down in the creases between my legs> > > > > > > > > and on> > > > > > > > > > > > top of my private area.> I had> > > tried just about everything...went> > > > > > > > > to dr.> > > > > > > > > > > > and was misdiagnosed.> Praise> > > God!!> > > > > > > > > > > > >> > > > > > >

> > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > >> > > > > > > > > > > > > > > ------------------------------------> > > > > >

[Guest guest]

HI All,

Someone suggested that I post my story, so I decided to do that.

Up until January 25th of this year, I had no idea that I had any kind of a

thyroid problem! On January 25th, at my first annual exam in 7 years, my doctor

pointed out a lump on my throat. She sent me for an ultra-sound and comforted

me by telling me that 99% of these lumps are not cancer.

I went for the ultrasound and when she received the results, my family

doctor called me to tell me that further investigation is required. The ultra

sound showed a fairly large adenoma. She sent me for a fine needle aspiration

biopsy guided with an ultrasound. They also told me that 95% of the time, it

turns out to be benign. So I didn't worry about it for the next week, while I

waited for the results.

Then I receive a call from my doctor, who calls me from home, since the office

called her with the results. She told me that I need to go to an endocrine

surgeon, because there are suspicious cells, and the tumor is 5 cm., which is

very large. The chances are, that I'll need to have it removed.

Two days later, I was at the endocrine surgeon's office. She told me that I

had a hurthle cell adenoma that is 5 cm. in size. She said for that type of a

tumor, there is only a 30% chance that it is malignant, but they cannot tell

whether or not it is from just a biopsy. When they take out the right side of

my thyroid, they will be able to examine the adenoma and at that time, they will

know if it is benign or malignant. If it is malignant, she wants to schedule me

for another surgery 6 weeks later to remove the rest of the thyroid.

I have scheduled the first surgery (hopefully the only one) for April 6th.

I spoke to the surgeon yesterday, and she assured she will do everything

possible to save all of my parathyroid glands. My question for the group is:

is there some way that I can avoid the second surgery, even if it turns out to

be malignant? If they cannot see that it spread, wouldn't it be a better idea

to just keep an eye on it and take iodine plus supplements, etc. I really don't

want to have to lose my whole thyroid!

Also, my husband does not have a thyroid. He had his out 25 years ago,

and he takes Synthroid. Would Nature Throid (sp?) be a better choice. His

doctor, of course,told him he would die without Synthroid each and every day of

his life.

Thanks for any advice or suggestions!!

Lynne

[Guest guest]

Lynne

I don't know where you live, but I would get a 2nd opinion from the best thyroid doctor you can find.

You can't put any of this stuff back in after they cut it out, if they are

wrong.

kmk

From: fountayn@... <fountayn@...>Subject: My Storyiodine Date: Tuesday, March 20, 2012, 10:55 AM

HI All,Someone suggested that I post my story, so I decided to do that.Up until January 25th of this year, I had no idea that I had any kind of a thyroid problem! On January 25th, at my first annual exam in 7 years, my doctor pointed out a lump on my throat. She sent me for an ultra-sound and comforted me by telling me that 99% of these lumps are not cancer.I went for the ultrasound and when she received the results, my family doctor called me to tell me that further investigation is required. The ultra sound showed a fairly large adenoma. She sent me for a fine needle aspiration biopsy guided with an ultrasound. They also told me that 95% of the time, it turns out to be benign. So I didn't worry about it for the next week, while I waited for the results.Then I receive a call from my doctor, who calls me from home, since the office called her with the results. She told me that I need to go to an endocrine surgeon, because

there are suspicious cells, and the tumor is 5 cm., which is very large. The chances are, that I'll need to have it removed.Two days later, I was at the endocrine surgeon's office. She told me that I had a hurthle cell adenoma that is 5 cm. in size. She said for that type of a tumor, there is only a 30% chance that it is malignant, but they cannot tell whether or not it is from just a biopsy. When they take out the right side of my thyroid, they will be able to examine the adenoma and at that time, they will know if it is benign or malignant. If it is malignant, she wants to schedule me for another surgery 6 weeks later to remove the rest of the thyroid.I have scheduled the first surgery (hopefully the only one) for April 6th. I spoke to the surgeon yesterday, and she assured she will do everything possible to save all of my parathyroid glands. My question for the group is: is there some way that I can avoid the second surgery, even if

it turns out to be malignant? If they cannot see that it spread, wouldn't it be a better idea to just keep an eye on it and take iodine plus supplements, etc. I really don't want to have to lose my whole thyroid!Also, my husband does not have a thyroid. He had his out 25 years ago, and he takes Synthroid. Would Nature Throid (sp?) be a better choice. His doctor, of course,told him he would die without Synthroid each and every day of his life.Thanks for any advice or suggestions!!Lynne

[Guest guest]

, The pathologist is the one that reads the slides from my biopsy.  Wouldn't that person be better equipped to say whether or not I need surgery.  But it's a mute point whether it's malignant or benign, because when it's larger than 4 cm., my first AND second opinion doctors said that it needs to come out.  It can turn malignant, even if it is benign now.  Mine is 5 cm.!

        Thanks,          LynneOn Thu, Mar 22, 2012 at 6:07 PM, Kienle <kmkitrader@...> wrote:

 

Lynne

 

I don't know where you live, but I would get a 2nd opinion from the best thyroid doctor you can find.

 

You can't put any of this stuff back in after they cut it out, if they are

wrong.

 

kmk

From: fountayn@... <fountayn@...>

Subject: My Storyiodine Date: Tuesday, March 20, 2012, 10:55 AM

 

HI All,Someone suggested that I post my story, so I decided to do that.Up until January 25th of this year, I had no idea that I had any kind of a thyroid problem! On January 25th, at my first annual exam in 7 years, my doctor pointed out a lump on my throat. She sent me for an ultra-sound and comforted me by telling me that 99% of these lumps are not cancer.

I went for the ultrasound and when she received the results, my family doctor called me to tell me that further investigation is required. The ultra sound showed a fairly large adenoma. She sent me for a fine needle aspiration biopsy guided with an ultrasound. They also told me that 95% of the time, it turns out to be benign. So I didn't worry about it for the next week, while I waited for the results.

Then I receive a call from my doctor, who calls me from home, since the office called her with the results. She told me that I need to go to an endocrine surgeon, because

there are suspicious cells, and the tumor is 5 cm., which is very large. The chances are, that I'll need to have it removed.Two days later, I was at the endocrine surgeon's office. She told me that I had a hurthle cell adenoma that is 5 cm. in size. She said for that type of a tumor, there is only a 30% chance that it is malignant, but they cannot tell whether or not it is from just a biopsy. When they take out the right side of my thyroid, they will be able to examine the adenoma and at that time, they will know if it is benign or malignant. If it is malignant, she wants to schedule me for another surgery 6 weeks later to remove the rest of the thyroid.

I have scheduled the first surgery (hopefully the only one) for April 6th. I spoke to the surgeon yesterday, and she assured she will do everything possible to save all of my parathyroid glands. My question for the group is: is there some way that I can avoid the second surgery, even if

it turns out to be malignant? If they cannot see that it spread, wouldn't it be a better idea to just keep an eye on it and take iodine plus supplements, etc. I really don't want to have to lose my whole thyroid!

Also, my husband does not have a thyroid. He had his out 25 years ago, and he takes Synthroid. Would Nature Throid (sp?) be a better choice. His doctor, of course,told him he would die without Synthroid each and every day of his life.

Thanks for any advice or suggestions!!Lynne

[Guest guest]

Hi Lynne,

I hope you don't mind me jumping in on your thread. I am new to this group, and this is my first posting. I too just recently was diagnosed with a hurthle cell. Mine is 17mm. It was discovered after I requested an ultrasound after I was having some pain in my neck and behind/around my eye, back of my head, etc. Oddly, no pain in my thyroid area, where the tumor is located. I had a biopsy, and of course they could not determine whether or not it is malignant. Because I had additional issues with my eyes, they sent me for a brain and orbital MRI to rule out any tumors in my head. I am still waiting for results, but the endocrinologist told me at first glance that he didn't see anything alarming. BUT, he wants me to have my thyroid out (at least half of it, along with the tumor), as a precaution. I may end up going that route, but first I am gathering all my facts and plan to take a somewhat short term wait and see approach. I figure, who knows how long I've had the thing, and I think I have at least 6 months to decide what I want to do, as long as my lymph nodes are not involved.

I bought a copy of Brownsteins' book Iodine, why you need it, why you can't live without it. From that book I learned about the iodine loading test to determine how deficient I really am and how much I should safely be supplementing (along with Vit. B, etc. ) My endo told me, based on nothing at all, that my iodine levels are fine, I guess because we live by the ocean, but I don't by that. I'm getting tested anyway. He also told me based on my TSH levels that I can't possibly have hyperthyroidism or Graves disease (more hooey) I will be following up with my opthamologist, as well as a chiropractor, since I recently learned through a chiropractic screening that I have "hot spots"/stress areas in my neck that correspond almost exactly with the pain in my neck and could very well be affecting the pressure in my eyes.. I asked for T3 and T4 test, along with a cortisol test for adrenal function. My endo is throwing me a bone at this point, but that is fine. If/when I decide to have surgery, he will be there for me. I read in Brownstein's book that there have been cases where people have supplemented with iodine and their tumors shrunk.

If you would like I can update you on what is going on with me and hopefully offer some kind of encouragement along the way. This is all new and scary for me, but I am refusing to respond in fear. I'm doing all I can to get myself back to being as healthy as I can (walking, changing my diet, getting better sleep, taking my supplements, etc). If anything I'll be the most healthy surgery patient as I can be. I really don't want to go there, and the thought of radioactive iodine is frightening, so I am hoping that iodine therapy will at least assist me in improving my overall health and give me the best chance of recovery if I should have to have surgery.

Jackie