my story

[Guest guest]

Roy, I can relate. I was taking Doxcy every day as an anti-malarial prophylactic

and I think it

had something to do with the ReA. I had severe internal genito-urinary problems

as well.

Lots of pain in the testicles, etc. It all has gone almost away. I have pain in

the SI joints, feet,

hands and lower back and still have some touble urinating and was given uroxtral

for that.

[Guest guest]

I posted My Story a few weeks ago. At the time, I was waiting on results from

lab tests ordered by an infectious disease doc. The tests finally came back. I

am negative for HLA B27, my SED rate was normal, and they detected no infections

of any kind. My CBC was normal.

At the time of the test, I had been taking large (for me) doses of ibuprofen for

two weeks. I wondered if the anti-inflammatory effect of the NSAID could have

affected my SED rate. I quit the ibuprofen because of its side effects, and

plunged into a full blown painful episode. I started naproxen three weeks ago,

and I only take three 220 mg tabs per 24 hours, about what is on the bottle. It

seems to help about as much as the ibuprofen, but without so much adverse effect

(that I am aware of). In fact, last weekend, and into Monday and Tuesday, I felt

so much better that it was like a miracle. I actually thought I had had a

spontaneous resolution.

But beginning about Wednesday, my pain and symptoms have returned and I am not

so well. As I pointed out in an earlier post, my arthritis symptoms are not

nearly as bad as the pain in my groin area which causes my testicles to feel

VERY painful and swollen. Most of my reactive " arthritis " inflammation is in the

area which would be covered by boxer shorts. My prostate hurts, my genitals, my

groin, my lower back, even my lower bowel and abdominal wall seem to hurt, be

irritated , and be inflamed.

I still have an appointment with a rheumatologist next week. I expect she will

look at the lab results, tell me to keep taking an NSAID, and wish me the best.

In fact, I am just hoping she will not look me straight in the eye, as a

urologist did, and tell me that there was nothing wrong with me. I am hoping she

will acknowledge the terrible pain and fatigue I have experienced since the

autumn, and give me some hope that it will continue to get better.

And then, of course, I hope it WILL get better.

Thanks,

Roy

---------------------------------

Food fight? Enjoy some healthy debate

in the Answers Food & Drink Q & A.

[Guest guest]

Spencer:

Our stories sound similar.

Were you tested for Chlamydia via urine culture? I'm told Chlamydia can live

in joint fluids and hide from common blood and urine tests. Just an idea.

My ID labs were all negative. I too am HLA B27 negative, also had swollen

testicles, etc.

Also, have you taken on any antibiotics?

I look forward to your reply.

[Guest guest]

Thanks, , for your interest in my progress. This all began for me with a

chlamydia infection, tested in blood by antibodies. I also happened to have some

symptoms of chlamydia, so it was pretty obvious. I took doxycycline for over

three weeks, and it made my reiter's-type reaction even worse. However, it did,

apparently, do in the chlamydia. I don't know if the chlamydia still exists

somewhere undetected, like in synovial fluid, etc., but I know I won't ever take

it again. I felt much, much worse and was much sicker the day after I began the

doxy, and have not recovered from it yet. My testicles, for example, were not in

the least inflamed or painful until after I began the doxycycline. My feeling is

that I had an adverse reaction, but kept taking it for a long time, and my

already in-progress reiter's-type syndrome was just accelerated and worsened.

I'm going to beat this yet, though.

Spencer (Roy)

---------------------------------

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[Guest guest]

Spencer:

At least you were found out what the cause. Your are HLA B27 negative?

I believe I had a chlamydia infection. Though tests were negative. I did

have my synovial fluids (knee) tested. Results were negative. I'm currently

taking doxy and rifampin. Not feeling any better. In fact, I feel sicker.

We'll see how it goes.

Thanks for keep me posted. Best of luck to you.

Regards,

[Guest guest]

Hello,Rose!

Do you have sauna at home? If yes- what kind of sauna?(model,company

and etc) Thank you very much ,g777n27

>

> I have been in phase 2 for two weeks and have lost 15 pounds. I

want to loose six pounds more, but I think to do that my BMI would be

classified as underweight and I don't know if it will let me weigh

that. I used to be an exercise junky when I weighed 105. I am 5'2 "

and I weigh 111 right now. At my heaviest I have weighed 130. I

haven't been able to exercise too strenuously during the hcg, but I do

try to walk and I also use an infared sauna, that I built myself. (It

was easy and inexpensive--let me know if you want to know how to build

one yourself). Anyhow, I have struggled with addictive eating for my

whole life and even though during phase 2 I have wanted to resort back

to that coping mechanism, I have resisted while on hcg. Sometimes I

am hungry and I eat an extra portion of vegetables. My weight was one

pound per day and now it's down to one half pound per day, but I'm not

complaining. I feel good, and I feel healthy--not starved. I think

this protocol and this forum is truly God sent and I am so grateful

for finding hcg and for the people on this forum who post their

stories. Thank you!!! By the way I never did the colonics or the

cleanses, but I do try to buy organic. Although sometimes that is not

posslible...

>

> Rose

>

[Guest guest]

Dear ,

So good to get to know you a bit through your story, and if you've read on the site the stories there many of us have similar stories, full of struggles and accomplishments, despite dealing with the beast, scoliosis. May I say I'm so sorry about the loss of your husband, what a blow, with all the other medical things going on in your family. I know personally how a diagnosis of scoliosis in a child can just be a blow that doesn't seem fair, right in the middle of my two revisions my daughter was diagnosised at age 9, and I sure was shaking a fist at God wondering how much more I and my family was supposed to take. You have sure been through it, and and Bells palsy onto it, REALLY not fair. Glad your daughter came through surgery well, mine was braced after years of watching her curve, and luckily her's stopped at 28 degrees and didn't become surgical. As with ourselves all we can do is get to good doc's, become informed, and make the best decisions, and hope for the best.

We are growing with members from Canada of late. I look forward to hearing what your doc has to say at your visit. I know all this is scary and tough, but you just have to walk through the steps to see just whats going on in your case, and then make decisions. Revision if you need it is tough, but so is the pain that drives us to it, and for many of us the increasing disability before hand. So you look to the surgery to get back function, walking and standing, have your pain decreased or gone, and bringing you back upright. You from what you described maybe at the beginning of all this, so it's good to see just whats going on by seeing a doc that deals in post Harrington Rod spines. I wish you luck in your journey, and while I'm sorry you must be among us, this is a great place to be while throdding through it, as you say, we get it. From your story I know you are a strong woman, and yes this second battle with scoliosis sucks, but you will find it in you again to gear up for the battle and we'll be there to support you through it!

Colorado Springs

[ ] my story

Hi everyone. My name is Hodgson and I've been lurking for a few months now and decided it was time to introduce myself. I'm a 51 year old Canadian living near Kingston, Ontario.My scoliosis was diagnosed when I was 14. My mom had been hemming a skirt for me and kept telling me to stand up straight. I was referred to Dr. Gillespie at Toronto Sick Childrens Hospital. Was told I had an S curve that was progressing and it would be better to go ahead with surgery than to wait till I was older and busy raising a family etc. So I had Harrington surgery in 1972 at age 15. After three months in bed and three months in a brace, I went on with my life.In my early twenties I had a desk job and found sitting all day very difficult. I can remember having a lot of pain for a while then noticing I could feel something poking down in the lumbar region. Turned out one of my rods was broken. So more surgery for removal and another one a while later for some other hardware.Married and had two children both by C section. Surprisingly my back didn't bother me when I was pregnant. Maybe those hormones that cause you to loosen up help! My son was 10 weeks premature and in hospital for five months - came home with an oxygen tank for two years. I remember this period of my life as very stressful and I remember my back being very sore, but of course my focus was on him, so I just dealt with it.My daughter was diagnosed with scoliosis at age 12. I remember trying to hold back the tears in the doctor's office, not wanting to scare her. She was braced for about a year. She also developed Bell's Palsy that year, which kind of put me in the Bargaining stage (I was grieving for her). I just kept thinking if the facial paralysis clears, we can deal with scoliosis. It will be OK. Luckily it did. Unfortunately she called me yesterday (she's away at university) to say the Bell's Palsy is back. So once again I worry. I think maybe that's what got me thinking about "my story" which of course includes my family and all we've been through. Anyway back to her scoliosis - she had an anterior fusion in 1999 at age 13, just four vertabrae in lumbar - it was felt to be the rigid curve and the thoracic the compensatory would correct itself over time. It seems to have somewhat, although her right shoulder rolls forward a bit.In 2001, my husband was diagnosed with cancer and passed away four months later. As you can imagine life was very stressful and emotional.Fortunately I had gone back to school once my kids started school and became an RN so I was able to support us. I had a lot of medical exposure by this point plus I wanted a job where I would be moving around not sitting. I sure got what I wanted there! All along the way I had been noticing my back bother me if I didn't rest a bit during the day. Also had the sense that I was getting a bit worse, losing a little height, getting a bit of a hump in the lumbar area. I was becoming more self conscious about it and dressing in baggier tops, jackets, etc. I also noticed I was tilting forward just a bit. On one of my daughter's checkups, I asked her surgeon to look at me. I had thought the hump was from my ribs but he said no it was my spine, the lumbar curve had progressed and also alot of bony overgrowth. He suggested he could basically plane it down. The thought of more surgery scared me so I put it off. I started searching for info on line and eventually found this site which has been such a help to me, knowing there are other people out there who get it and have gone through revision. At first I thought, I'm not that bad, I won't need surgery, but more and more I'm noticing what I used to call discomfort is becoming pain. I was off work this summer with an acute injury - pain was in the lumbar area right at the apex of the curve. I had trouble walking and rolling over in bed. I was so scared. Seems better now, but I have the sense it is just the beginning.Lately I've noticed I've become more and more focused on my back. I have trouble sleeping and I wake up thinking about my back and my future. I'm not sure how much longer I'll be able to work. I can't help but feel I'm on a journey toward more misery with my back. Instead of looking forward to retirement, I worry.I have an appointment with Dr. in Toronto on Oct. 29.No one has ever diagnosed me with Flatback, so we'll see what he has to say. I was so happy to hear Elaine say she is seeing Dr Ford for her surgery. He is the only other name I have for Canadian surgeons so I will follow her progress closely.Thank you all for reading my story. Sorry it is so long, but this is my life. By the way, I do have a wonderful man in my life now, but I'm not sure he really gets it. He's going with me to the appt. so hopefully that will help him understand more.I love this group.

[Guest guest]

Hi ,

Thanks for posting your story. No matter how many times I read a new

members story it always makes me feel the same way...I am glad you

are here joining our group of firends...but very sorry that you are

encountering these problems just when you should be getting to an

easier time in life.

You have had your share of sorrows...and I do hope that whatever is

going on in your spine that you are able to get resolution or answers

soon.

(You are lucky enough to live in one of my favorite spots in the

world. Every year for the last 7 years we have vacationed on the

Rideau canal...this year we are in Denamrk so we didn't make the

journey, but next year we will be back... perhaps we can meet up

somewhere! We always travel south on the waterway to about

Falls.)

Our stories or timelines are vary similar...but that doesn't mean

anything other than us " vintage " HR's seem destined to encounter late

arising complications. I think the doctors that don't see a lot of

old HR folks either don't know or don't want to admit that there are

fairly consistent problems of accerated disc degeneration in the

adjacent segements at the very least. And of course at the worse

there is severe flatback deformity. The term " Transistion Syndrome "

also seems to be popping up these days in the liturature which seems

to span the range of problems that can crop up.

I can well recall the feeling that I was constantly focusing on my

back after I learned about flatback from an online group. I knew in

my heart that was probably what was going on with me, even though I

had not really been symptomatic until the disc let go. I guess I had

been compensating very well until, whamoo...everything just let go.

No pun intended....but I think my body just reached the tipping

point! My local ortho was useless...but once I had a good opinion it

was like having a missing tooth....I just couldn't stop running my

tongue over the hole! I wanted to hear the diagnosis...but I

didn't...because then I felt I would have to do something about it.

No matter what you hear on the 29th though...this usually isn't an

emergency and you will have all the time in the world to think about

what your choices are.

I am sorry to hear of the loss of your husband. That must have been

an awful time in your life. Hopefully before long things will come

right again and you will be able to have a pleasant retiremnet. I

tell myself that all that really has changed for me is the awareness

that my body is not going to last forever...my back is a tad more

fragile than some folks....but hey...I don't feel that I have too

many limitations and this fusion hasn't changed too much about how I

live my life. It did, of course mean big changes for the year or so

around the surgery...but it is " doable " .

I don't know too much about the Canadian system, except that getting

in to see a specialist, or several, can be challenging...so being

very well prepared for the visit is a must. Be sure to write down all

your questions and have whoever accompanies you to the doctor come

into the exam room and make sure they have a copy of the questions

too...that way they can keep you on track and make sure you get all

your questions answered. Also, find out what the protocol is for

followup questions....because everyone walks out of their virst visit

a little stunned, no matter how well prepared they are, if the

diagnosis is flatback...you will probably feel a little like the wind

had been knocked out of you.

Of course we are here to help you along and share in your progress. I

will put you on the calendar so we all remember to ask about he

consult.

Welcome aboard,

Cam

[Guest guest]

Hi, , and welcome to active posting!

I'm in New Hampshire, but I once spent a week in Kingston for a teacher's workshop and it's a lovely area.

I'm so sorry for all you've been through, and your daughter, too. There's a lot of scoliosis in my family, and it's taken my dad years to get over apologising for giving it to me. My answer has always been, "what, you think I'd rather not have been born?!" We all play the hands we're dealt, and there is always someone worse off.

I hope you don't have flatback, but it certainly could be, and there is no doubt you need the opinion of a qualified revision surgeon. Best of luck on your visit to Dr. , and please keep us posted.

Sharon

[ ] my story

Hi everyone. My name is Hodgson and I've been lurking for a few months now and decided it was time to introduce myself. I'm a 51 year old Canadian living near Kingston, Ontario.My scoliosis was diagnosed when I was 14. My mom had been hemming a skirt for me and kept telling me to stand up straight. I was referred to Dr. Gillespie at Toronto Sick Childrens Hospital. Was told I had an S curve that was progressing and it would be better to go ahead with surgery than to wait till I was older and busy raising a family etc. So I had Harrington surgery in 1972 at age 15. After three months in bed and three months in a brace, I went on with my life.In my early twenties I had a desk job and found sitting all day very difficult. I can remember having a lot of pain for a while then noticing I could feel something poking down in the lumbar region. Turned out one of my rods was broken. So more surgery for removal and another one a while later for some other hardware.Married and had two children both by C section. Surprisingly my back didn't bother me when I was pregnant. Maybe those hormones that cause you to loosen up help! My son was 10 weeks premature and in hospital for five months - came home with an oxygen tank for two years. I remember this period of my life as very stressful and I remember my back being very sore, but of course my focus was on him, so I just dealt with it.My daughter was diagnosed with scoliosis at age 12. I remember trying to hold back the tears in the doctor's office, not wanting to scare her. She was braced for about a year. She also developed Bell's Palsy that year, which kind of put me in the Bargaining stage (I was grieving for her). I just kept thinking if the facial paralysis clears, we can deal with scoliosis. It will be OK. Luckily it did. Unfortunately she called me yesterday (she's away at university) to say the Bell's Palsy is back. So once again I worry. I think maybe that's what got me thinking about "my story" which of course includes my family and all we've been through. Anyway back to her scoliosis - she had an anterior fusion in 1999 at age 13, just four vertabrae in lumbar - it was felt to be the rigid curve and the thoracic the compensatory would correct itself over time. It seems to have somewhat, although her right shoulder rolls forward a bit.In 2001, my husband was diagnosed with cancer and passed away four months later. As you can imagine life was very stressful and emotional.Fortunately I had gone back to school once my kids started school and became an RN so I was able to support us. I had a lot of medical exposure by this point plus I wanted a job where I would be moving around not sitting. I sure got what I wanted there! All along the way I had been noticing my back bother me if I didn't rest a bit during the day. Also had the sense that I was getting a bit worse, losing a little height, getting a bit of a hump in the lumbar area. I was becoming more self conscious about it and dressing in baggier tops, jackets, etc. I also noticed I was tilting forward just a bit. On one of my daughter's checkups, I asked her surgeon to look at me. I had thought the hump was from my ribs but he said no it was my spine, the lumbar curve had progressed and also alot of bony overgrowth. He suggested he could basically plane it down. The thought of more surgery scared me so I put it off. I started searching for info on line and eventually found this site which has been such a help to me, knowing there are other people out there who get it and have gone through revision. At first I thought, I'm not that bad, I won't need surgery, but more and more I'm noticing what I used to call discomfort is becoming pain. I was off work this summer with an acute injury - pain was in the lumbar area right at the apex of the curve. I had trouble walking and rolling over in bed. I was so scared. Seems better now, but I have the sense it is just the beginning.Lately I've noticed I've become more and more focused on my back. I have trouble sleeping and I wake up thinking about my back and my future. I'm not sure how much longer I'll be able to work. I can't help but feel I'm on a journey toward more misery with my back. Instead of looking forward to retirement, I worry.I have an appointment with Dr. in Toronto on Oct. 29.No one has ever diagnosed me with Flatback, so we'll see what he has to say. I was so happy to hear Elaine say she is seeing Dr Ford for her surgery. He is the only other name I have for Canadian surgeons so I will follow her progress closely.Thank you all for reading my story. Sorry it is so long, but this is my life. By the way, I do have a wonderful man in my life now, but I'm not sure he really gets it. He's going with me to the appt. so hopefully that will help him understand more.I love this group.

[Guest guest]

, Thank you for sharing your story, it is so nice to know your not alone. I have read and re-read members stories and we'll have so much in common. The one thing I have noticed in the stories is we're very STRONG individuals, to even think about having another surgery after all we endured with the first one Blows my mind...... and for what so we can have a pain free life. The life I have become Accustomed to will be no more, But a better quality of life Will, follow.............. Eventually <juliehodgson04@...> wrote: Hi everyone. My name is Hodgson and I've been lurking for a few months now and decided it was time to introduce myself. I'm a 51 year old Canadian living near Kingston, Ontario.My scoliosis was diagnosed when I was 14. My mom had been hemming a skirt for me and kept telling me to stand up straight. I was referred to Dr. Gillespie at Toronto Sick Childrens Hospital. Was told I had an S curve that was progressing and it would be better to go ahead with surgery than to wait till I was older and busy raising a family etc. So I had Harrington surgery in 1972 at age 15. After three months in bed and three months in a brace, I went on with my life.In my early twenties I had a desk job and found sitting all day very difficult. I can remember

having a lot of pain for a while then noticing I could feel something poking down in the lumbar region. Turned out one of my rods was broken. So more surgery for removal and another one a while later for some other hardware.Married and had two children both by C section. Surprisingly my back didn't bother me when I was pregnant. Maybe those hormones that cause you to loosen up help! My son was 10 weeks premature and in hospital for five months - came home with an oxygen tank for two years. I remember this period of my life as very stressful and I remember my back being very sore, but of course my focus was on him, so I just dealt with it.My daughter was diagnosed with scoliosis at age 12. I remember trying to hold back the tears in the doctor's office, not wanting to scare her. She was braced for about a year. She also developed Bell's Palsy that year, which kind of put me in the Bargaining stage (I was

grieving for her). I just kept thinking if the facial paralysis clears, we can deal with scoliosis. It will be OK. Luckily it did. Unfortunately she called me yesterday (she's away at university) to say the Bell's Palsy is back. So once again I worry. I think maybe that's what got me thinking about "my story" which of course includes my family and all we've been through. Anyway back to her scoliosis - she had an anterior fusion in 1999 at age 13, just four vertabrae in lumbar - it was felt to be the rigid curve and the thoracic the compensatory would correct itself over time. It seems to have somewhat, although her right shoulder rolls forward a bit.In 2001, my husband was diagnosed with cancer and passed away four months later. As you can imagine life was very stressful and emotional.Fortunately I had gone back to school once my kids started school and became an RN so I was able to support us. I had a lot

of medical exposure by this point plus I wanted a job where I would be moving around not sitting. I sure got what I wanted there! All along the way I had been noticing my back bother me if I didn't rest a bit during the day. Also had the sense that I was getting a bit worse, losing a little height, getting a bit of a hump in the lumbar area. I was becoming more self conscious about it and dressing in baggier tops, jackets, etc. I also noticed I was tilting forward just a bit. On one of my daughter's checkups, I asked her surgeon to look at me. I had thought the hump was from my ribs but he said no it was my spine, the lumbar curve had progressed and also alot of bony overgrowth. He suggested he could basically plane it down. The thought of more surgery scared me so I put it off. I started searching for info on line and eventually found this site which has been such a help to me, knowing there are other people out

there who get it and have gone through revision. At first I thought, I'm not that bad, I won't need surgery, but more and more I'm noticing what I used to call discomfort is becoming pain. I was off work this summer with an acute injury - pain was in the lumbar area right at the apex of the curve. I had trouble walking and rolling over in bed. I was so scared. Seems better now, but I have the sense it is just the beginning.Lately I've noticed I've become more and more focused on my back. I have trouble sleeping and I wake up thinking about my back and my future. I'm not sure how much longer I'll be able to work. I can't help but feel I'm on a journey toward more misery with my back. Instead of looking forward to retirement, I worry.I have an appointment with Dr. in Toronto on Oct. 29.No one has ever diagnosed me with Flatback, so we'll see what he has to say. I was so happy to hear Elaine say

she is seeing Dr Ford for her surgery. He is the only other name I have for Canadian surgeons so I will follow her progress closely.Thank you all for reading my story. Sorry it is so long, but this is my life. By the way, I do have a wonderful man in my life now, but I'm not sure he really gets it. He's going with me to the appt. so hopefully that will help him understand more.I love this group.

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games.

[Guest guest]

Hi > I had a series of blood tests which I requested in July as I was> feeling more tired than usual - (I have Narcolepsy - major symptom> sleepiness) and strange aches & pains. When they came back my serum> TSH level was 4.3 - according to the labs `slightly raised' - & told> to re-test in 3.months. Serum ferritin was 19 ug/L - `satisfactory'> according to labs. I asked for T4 test - Free T4 was 12.1 pmo/L. > Also had a cholesterol level test which was 6 mmo/L . (comment -a bit> high) Liver function which was apparently normal. Thyroid antibodies> which I was told were normal. (tho it says 10 unknown units which GP> said meant nothing )

How they can say your tests are 'normal' with a Ferritin level of 19 when the reference range is 20 to 200, your TSH 4.3 (in Germany the top of the TSH range is 2.5 and in America 3.3 - so you would have been diagnosed immediately had you been resident there and a rising cholesterol level, is ridiculous. In the good old days, they recognised that raised cholesterol could be indicative of hypothyroidism with symptoms etc. I don't believe there is a reference range for antibodies, and am not sure what 10 means.

> Had the 3 month TSH test & it was 17.3! My GP has prescribed 100 mcg> Eltroxin. & said to go back for a blood test after 6 weeks. I asked> about Armour - but she says its not available. Is it unusual for it to> go up so high so quickly?

Did they test at the same time your FT4 and FT3? No doubt this would have been very low and I hope they do a FULL thyroid function test in 6 weeks. Do remember that before you go to get your blood tested, stop your thyroid hormone replacement at least 24 hours before the test - and tell them you want to know where your Free T3 is to see if you are converting.

> I have had a lot of pain in my right elbow for months and my right> knee which gets swollen & weak. Have had carpel tunnel syndrome for> many years and my knee has bothered me on & off for years as well as> cysts on my right eye which have recurred occasionally too & again> now.

Hopefully, these complaints might improve once you are well and truly on Thyroxine. Often you get these symptoms because your body can't function without thyroid hormone. You will have to wait and see. Have you asked your doctor about your carpet tunnel syndrome and why this was not connected with thyroid dysfunction long ago. They should look at all complaints and signs - not just go by blood test results.

I'm sure I have candida and am struggling with sugar addiction.> I have read quite a bit now about the thyroid/adrenals/iron but> finding it hard to assimilate/understand the connections and what came> first (chicken or egg?) It was a relief to read other people> describing a `foggy brain' and memory problems as I have worried> about alzheimers which my dad died of.

Go to the Home Page of this forum thyroid treatment and in the Menu, click FILES. Read everything you can about Ferritin, Adrenals and Candida. People get awful 'brain' problems if they are not getting sufficient thyroxine and T3. T3 is needed to get through the brain barrier to make it function and this is the reason people suffer short term memory and 'brain fog'. There is light at the end of the tunnel, and be assured that once you get on the correct dose (whether this is synthetic T4 alone, a combination of synthetic T4/T3 or natural Armour). It might take some time, but you must be patient and read, read, read and if you don't understand anything - just shout and somebody will help you.

> Both my older sisters have had Thyroiditis and my older sister had it> twice - the 2nd time after a successful fight against colon cancer.> Both say the thyroxine has been great. I have to say that as a> vegetarian I'm not keen on the idea of taking armour & also can't> really afford to pay for any treatment . Do you think there are any> indications that the eltroxin may not work for me? Do you think that> if my liver function tests came back (apparently) ok that my liver may> manage the conversion. Sorry this is so long.

There are, as yet, no indications that thyroxine will not work for you. It works well for a majority of sufferers, so don't worry about something that might never happen. If thyroxine alone is not sufficient and it is found you can't convert through the liver to the active T3 hormone, then your doctor can give you synthetic T4 and T3 without any problem through the NHS. I am not sure whether liver function tests coming back normal have anything to do with whether or not you are able to 'convert' or not.

Hope this helps.

Luv - Sheila

> >

[Guest guest]

Hi ,

Yes it's not unusual for a thyroid to go that quickly- I went

from OK before the birth of my son to 126 in 3 months.

Were you told to take 100mcg T4 straight away? Usually it is ramped up

slowly to prevent risk of stressing your heart. I started with 25 mcg then

increased doses every 6 weeks until TSH was in range.

The T4 may well be fine for you, but it is good to know there are

alternatives out there if it doesn't.

Thyroid problems do run in families- I'm third generation ---with a nervous

daughter.

When they came back my serum TSH level was 4.3 - according to the labs

`slightly raised' - & told

to re-test in 3.months. - `satisfactory'

according to labs. I asked for T4 test - Free T4 was 12.1 pmo/L.

Also had a cholesterol level test which was 6 mmo/L . (comment -a bit

Had the 3 month TSH test & it was 17.3! My GP has prescribed 100 mcg

Eltroxin. & said to go back for a blood test after 6 weeks..............

It was a relief to read other people

describing a `foggy brain' and memory problems as I have worried

about alzheimers which my dad died of.

Both my older sisters have had Thyroiditis and my older sister had it

twice -

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing medication.

[Guest guest]

,

Thanks for sharing your interesting story with us. Please keep in touch with

us.

[Guest guest]

Yes, it is Lyme. There are no smoking gun tests. your test came back from IGenex

positive. You may want to seek out a better LLMD. From the sounds of it, you

need to be on something stronger and in more forms. I am on 3 different abx

because they all can reach into different areas of the cells. It sounds like you

have it everywhere, just like me. Have your kids tested, too. Kids don't always

know how to discribe how they feel and may seem fine but are any of them having

trouble in school? Especially your 4 year old. The sooner the better. Hang in

there- life is not over and all you can do is take care of yourself and your

family and if you really want to help yourself- tell as many people as you can

about Lyme. Spread the word so the public isn't so ignorant on the subject.

People I talk to think it is like getting a cold or maybe strep throat. Oh, take

some pills- you will be fine in a week or so. I wish everyone knew what I know.

Good luck to you! Hang in there!

Amy in Wisconsin

teresa91567 <teresa91567@...> wrote:

HI, everyone I am a 40 year old mom of 4 children who lives in

Warwick New York. I moved here from N.Y.C. 2000 8 years ago for my

children to be in the Suburbs .( ages of children 15,14.11 and 4 )

When I bought the home the previous owners wife could not come to

closing ( Severe MS maybe a red flag). Anyway I would pull deer tick

off of myself almost daily enjoying my lovely woods and stream loving

this new home. I really did not give the tick much thought thinking

that I will get tested for lyme 2x a year no problem. If I have lyme

I will take abx and get better. In 2002 I developed severe pains in

the bottom of my feet and calves with muscle twitching everywhere. I

went to every doctor, had scans, had bloodwork( ) everyone said

I was fine. This lasted on and off for 2 1/2 years until I got

pregnant it seemed to disappear. 6 months after given birth I could

not stop the bleeding of my menses every month it had gotten worse

until I had to have a hysterectomy at 37. November 2007 this year I

developed a sinus infection when my 4 year old son had gotten sick (

you know when they start pre-school ) I was put on ceftin. I had to

stop this severe Flushing, high bp, racing thoughts, chills, freezing

hands and feet this to me opened Pandora's box have not been better

since yes in the previous years I had little joint pains here and

there but nothing that never went away. I never got better constant

low-grade fever,sound sensitivity, touch sensitivity, chills,

flushing (especially ears) , burning pains in back excruciating My

husband convinced it was in my head told me I had to see a

psychiatrist, children afraid I have to tell you that if it wasn't

for my children I think I would of killed myself. I know this sounds

drastic but I felt like I was falling into a black pit I could not

take feeling sick or how angry and upset I was making everyone. In

January my daughter's friends mother was talking to someone about

lyme disese . I told her about myself and she was the one who

reccommended I see a LLMD. I found a good one that takes my

insurance. My Igenex came back IGM - 39 IND. 41++ IGG- 31IND,23-25

IND.,39 IND., 30++. 41++ , CD-57 VERY LOW. Doctor seems to lead

towards chronic lyme since abx is causing joint pain. since on it for

a month. Now started diflucan it is given me the chills feel really

strange I kind of feel like I want to give up. I do not want anyone

to feel sorry for me I just can not take feeling so bad on the abx my

bones and joints hurt so bad. I worry about what is in store for me

in the fuuture, could my 4 year old son be infected ? I pray to God

everyday to help me get through this. I have crazy thoughts like

maybe there is something else wrong with me maybe I am not going in

the right direction.Lyme just makes sense but no smoking gun tests

yet.The joint pains I am getting from abx help me to continue because

I think it is a sign. Thank You for listening

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

, you might want to research " antibiotic refractory lyme

arthritis " . This is what I have been diagnosed as having.

" Moreover, a small percentage of Lyme patients who do receive

antibiotic therapy suffer from persistent arthritis for months or

even several years after 2-3 months of oral and intravenous

antibiotic therapy. This confounding condition has been termed

antibiotic-refractory, or slowly resolving, Lyme arthritis. "

http://www.health.am/ab/more/antibody-responses-in-patients-with-lyme-

arthritis/

Also read about the herxheimer reaction which you are probably

suffering from.

http://en.wikipedia.org/wiki/Herxheimer_reaction

Please don't give up. I know what you are going through. I have been

thrown the shrink deal and also have been grossly misdiagnosed. I

figure I have had lyme disease for at least 35 years.

V

>

> teresa91567 <teresa91567@...> wrote:

> HI, everyone I am a 40 year old mom of 4 children who

lives in

> Warwick New York. I moved here from N.Y.C. 2000 8 years ago for my

> children to be in the Suburbs .( ages of children 15,14.11 and 4 )

> When I bought the home the previous owners wife could not come to

> closing ( Severe MS maybe a red flag). Anyway I would pull deer

tick

> off of myself almost daily enjoying my lovely woods and stream

loving

> this new home. I really did not give the tick much thought thinking

> that I will get tested for lyme 2x a year no problem. If I have

lyme

> I will take abx and get better. In 2002 I developed severe pains in

> the bottom of my feet and calves with muscle twitching everywhere.

I

> went to every doctor, had scans, had bloodwork( ) everyone

said

> I was fine. This lasted on and off for 2 1/2 years until I got

> pregnant it seemed to disappear. 6 months after given birth I could

> not stop the bleeding of my menses every month it had gotten worse

> until I had to have a hysterectomy at 37. November 2007 this year I

> developed a sinus infection when my 4 year old son had gotten sick

(

> you know when they start pre-school ) I was put on ceftin. I had to

> stop this severe Flushing, high bp, racing thoughts, chills,

freezing

> hands and feet this to me opened Pandora's box have not been better

> since yes in the previous years I had little joint pains here and

> there but nothing that never went away. I never got better constant

> low-grade fever,sound sensitivity, touch sensitivity, chills,

> flushing (especially ears) , burning pains in back excruciating My

> husband convinced it was in my head told me I had to see a

> psychiatrist, children afraid I have to tell you that if it wasn't

> for my children I think I would of killed myself. I know this

sounds

> drastic but I felt like I was falling into a black pit I could not

> take feeling sick or how angry and upset I was making everyone. In

> January my daughter's friends mother was talking to someone about

> lyme disese . I told her about myself and she was the one who

> reccommended I see a LLMD. I found a good one that takes my

> insurance. My Igenex came back IGM - 39 IND. 41++ IGG- 31IND,23-25

> IND.,39 IND., 30++. 41++ , CD-57 VERY LOW. Doctor seems to lead

> towards chronic lyme since abx is causing joint pain. since on it

for

> a month. Now started diflucan it is given me the chills feel really

> strange I kind of feel like I want to give up. I do not want anyone

> to feel sorry for me I just can not take feeling so bad on the abx

my

> bones and joints hurt so bad. I worry about what is in store for me

> in the fuuture, could my 4 year old son be infected ? I pray to God

> everyday to help me get through this. I have crazy thoughts like

> maybe there is something else wrong with me maybe I am not going in

> the right direction.Lyme just makes sense but no smoking gun tests

> yet.The joint pains I am getting from abx help me to continue

because

> I think it is a sign. Thank You for listening

>

>

>

>

>

>

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

> Be a better friend, newshound, and know-it-all with Mobile.

Try it now.

>

>

[Guest guest]

From: Amy P <amybug54143@...>

Date: 2008/03/13 Thu AM 09:36:04 CDT

Subject: Re: [ ] My Story

Many of your symptoms seem specific to Bartonella. Make sure you get tested for

co-infections too.

Yes, it is Lyme. There are no smoking gun tests. your test came back from IGenex

positive. You may want to seek out a better LLMD. From the sounds of it, you

need to be on something stronger and in more forms. I am on 3 different abx

because they all can reach into different areas of the cells. It sounds like you

have it everywhere, just like me. Have your kids tested, too. Kids don't always

know how to discribe how they feel and may seem fine but are any of them having

trouble in school? Especially your 4 year old. The sooner the better. Hang in

there- life is not over and all you can do is take care of yourself and your

family and if you really want to help yourself- tell as many people as you can

about Lyme. Spread the word so the public isn't so ignorant on the subject.

People I talk to think it is like getting a cold or maybe strep throat. Oh, take

some pills- you will be fine in a week or so. I wish everyone knew what I know.

Good luck to you! Hang in there!

Amy in Wisconsin

teresa91567 <teresa91567@...> wrote:

HI, everyone I am a 40 year old mom of 4 children who lives in

Warwick New York. I moved here from N.Y.C. 2000 8 years ago for my

children to be in the Suburbs .( ages of children 15,14.11 and 4 )

When I bought the home the previous owners wife could not come to

closing ( Severe MS maybe a red flag). Anyway I would pull deer tick

off of myself almost daily enjoying my lovely woods and stream loving

this new home. I really did not give the tick much thought thinking

that I will get tested for lyme 2x a year no problem. If I have lyme

I will take abx and get better. In 2002 I developed severe pains in

the bottom of my feet and calves with muscle twitching everywhere. I

went to every doctor, had scans, had bloodwork( ) everyone said

I was fine. This lasted on and off for 2 1/2 years until I got

pregnant it seemed to disappear. 6 months after given birth I could

not stop the bleeding of my menses every month it had gotten worse

until I had to have a hysterectomy at 37. November 2007 this year I

developed a sinus infection when my 4 year old son had gotten sick (

you know when they start pre-school ) I was put on ceftin. I had to

stop this severe Flushing, high bp, racing thoughts, chills, freezing

hands and feet this to me opened Pandora's box have not been better

since yes in the previous years I had little joint pains here and

there but nothing that never went away. I never got better constant

low-grade fever,sound sensitivity, touch sensitivity, chills,

flushing (especially ears) , burning pains in back excruciating My

husband convinced it was in my head told me I had to see a

psychiatrist, children afraid I have to tell you that if it wasn't

for my children I think I would of killed myself. I know this sounds

drastic but I felt like I was falling into a black pit I could not

take feeling sick or how angry and upset I was making everyone. In

January my daughter's friends mother was talking to someone about

lyme disese . I told her about myself and she was the one who

reccommended I see a LLMD. I found a good one that takes my

insurance. My Igenex came back IGM - 39 IND. 41++ IGG- 31IND,23-25

IND.,39 IND., 30++. 41++ , CD-57 VERY LOW. Doctor seems to lead

towards chronic lyme since abx is causing joint pain. since on it for

a month. Now started diflucan it is given me the chills feel really

strange I kind of feel like I want to give up. I do not want anyone

to feel sorry for me I just can not take feeling so bad on the abx my

bones and joints hurt so bad. I worry about what is in store for me

in the fuuture, could my 4 year old son be infected ? I pray to God

everyday to help me get through this. I have crazy thoughts like

maybe there is something else wrong with me maybe I am not going in

the right direction.Lyme just makes sense but no smoking gun tests

yet.The joint pains I am getting from abx help me to continue because

I think it is a sign. Thank You for listening

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi Marsaday1971, welcome to the group and hope you get some answers.first of all look in our files and learn all you can. If i were you I would not take any thing jest yet. stop taking the meds you doctor have proscribed for you, this may take some time as the drug for depression Will not be easy to stop. you need to clear the body of these drugs ,so tests will be helpful for you. I would get the 24 hour salivary test done also FT3 and TPOab this last one is for antibodies. these will not be accurate if the medicines are still in the body. or better still ask Sheila for a list of doctors who will be able to help you. you need to no which parts are not working properly before trying to self treat. hope this helps you angel.

Sent from .

A Smarter Email.

[Guest guest]

It is a bit hard to work out what is going on, but I'm just putting

on my 'I'm not a doctor but what could it possibly be' thinking cap

to try and think of a few ideas. Just remember I'm not medically

trained, so all that I can do is just throw a few ideas around. I

strongly recommend that you should see a doctor to discuss any of

the following ideas.

Can you see someone that specialises in dealing with hormone

problems? My period has been out of whack since I was diagnosed

with thyroid problems and I have recently gone to see someone who

specialises in this area.

Do you continue to have an issue with losing weight and diarrhoea?

I'm just wondering whether you are showing signs of Coeliac

Disease. You need to get it tested, rather than guess. It can

cause infertility, bloating, do strange things to your moods, etc.

Click on the links below to read general information about the

symptoms AND the way to diagnose the disease. NOTE THAT A BLOOD

TEST IS NOT DEFINITIVE, even if blood levels appear to be normal!!!

A biopsy is the only way to tell whether you are coeliac or not. DO

NOT start a gluten free diet prior to testing - it will stuff up the

test results.

http://www.coeliac.org.au/dis-symptoms.html

http://www.coeliac.org.au/dis-diag.html

Here is some info from a very useful online site about tests. Here

is the info re Coeliac Disease testing. Hmmm. After looking at it,

I realise that the doc's didn't do all the testing that I needed!!!

How about that? Regardless of that, I've been on a strict gluten

free diet for years because I am definitely gluten intolerant. I've

read that people with thyroid problems should be on a strict gluten

free diet anyway. If I have gluten I feel down, disoriented,

lightheaded, bloated, quite sick in the gut (usually within 24 hours

of ingestion), and have an immediate need to sleep, etc.

http://www.labtestsonline.org.uk/understanding/conditions/celiac.html

http://www.labtestsonline.org.uk/understanding/analytes/coeliac_test/

glance.html

(if the link doesn't work properly, just copy and paste the whole

line from http to .html [if that makes sense] - sometimes when I

post links on this forum only 3/4 of the link is 'hyperlinked', so

you will need to do it manually).

This may be a long shot, but my friend had problems with her gut

since she was a kid up until her mid 20's. They worked out that she

had an intolerance to things that contained Salicylate acid

(including food and aspirin). After watching her for years in

constant pain from stomach aches, diarrhoea etc, she was finally

well again after treatment. She saw a naturopath who 'fixed' her

and she has been well ever since.

I'm not sure what this site is like, but I did a quick search and

found the following info about salicylates for you. You might want

to search for another site as well.

http://www.salicylatesensitivity.com/about

Here is a 'scholar' search that brought up a few sites for you to

look at.

http://scholar.google.com/scholar?

hl=en & lr= & q=Salicylate+intolerance & btnG=Search

Re the thryoid tests. Make sure they test for more than free T4 and

TSH. The doc should test for free T3, free T4, TSH & thyroid

antibodies (especially thyroid peroxidase antibodies). My docs also

test for Reverse T3 and look at this result in conjunction with free

T3. Not too many doctors realise the relevance of looking at these

two tests (Reverse T3 and free T3) together. In my case, I had TSH

and free T4 'within range', however my Reverse T3 levels were too

high (well above normal range) and my free T3 was at the very lowest

end of 'normal'. I feel terrible most of the time despite my

doctors best efforts- I don't feel much different than before I

started my thyroid medication.

Info about thyroid antibody tests

http://www.labtestsonline.org/understanding/analytes/thyroid_antibodi

es/glance.html

Re adrenal supplements. Please get your adrenals tested prior to

using supplements. No point taking them unless you know it is a

problem.

The link below talks about 'addison's disease' however it refers to

adrenal insufficiency in general.

http://www.labtestsonline.org.au/understanding/conditions/addisons_di

sease-3.html

I've heard a 24hr cortisol saliva test is useful to test your

adrenals, but I'd wait to hear from others (Sheila? Any ideas?)

At the moment it seems like there are a lot of 'unknowns' about the

causes of your health problems so I think that it is best to wait

for your test results. Have further tests done to see if you can

find out the cause of your problems. Plan with your doc once you

know what you are dealing with. If for some reason your doc won't

listen, go and find another doc who will.

All the best to you.

P

>

I think i have a problem with either this or

> thyroid or adrenals. Anything which

> strikes a bell please tell.

>

> i am 36, male and have just found out i have sub normal sperm

levels -

> we are trying for a baby.

> i lost weight (i was and still am a sports guy so in good shape)

> my stomach became bigger with fat/water retention and bloating

> i couldn't breath very well and had to stop playing sports

> stamina and strength decreased a lot appetite decreased as did sex

drive i went through a period at the start when on waking i rushed

to the toilet and basically flooded my bowels into the loo.

>

> for the next yr i was tired and listless and they said i had post

> viral syndrome. then i became dizzy and staggered a bit when

walking. they then said i had depression and put me on prozac. this

didn't help any of the physical symptoms but made me feel a bit

better.

>

put back on anti D's. have have

> been on them for 11 yrs non stop.

> i have ordered some adrenal tablets to take to see if they affect

> anything and i have order some 15mg armour tablets from america.

do you think i should be taking the armour myself as an experiment

(only low dose to start with).

>

> Does anyone have any thoughts/insights/ideas which could help me

on my

> quest to get well.

>

[Guest guest]

I think Pat has said it all for the moment Marsaday - I think it very important you get these tests and also do the 24 hour salivary adrenal profile to see where your DHEA and cortisol levels lie at four specific times during the day. You can get this done through NPTech Services. You can find the tests they do and the prices they charge in our FILES. Scroll down to 'NPTech services'. Also, you are really wasting your money buy medications (and it could be dangerous) in taking adrenal glandulars or thyroid hormone replacement. Nobody should be taking thyroid hormone replacement unless you have been given a diagnosis, and if you can't get one on the NHS (which more and more, it is becoming increasingly impossible to get one with them) you should see a private hormone specialist.

Talk to your doctor about any thyroid hormone replacement trials.

luv - Sheila

It is a bit hard to work out what is going on, but I'm just putting on my 'I'm not a doctor but what could it possibly be' thinking cap to try and think of a few ideas. Just remember I'm not medically trained, so all that I can do is just throw a few ideas around. I strongly recommend that you should see a doctor to discuss any of the following ideas. Can you see someone that specialises in dealing with hormone problems? My period has been out of whack since I was diagnosed with thyroid problems and I have recently gone to see someone who specialises in this area.

..

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.1/1385 - Release Date: 18/04/2008 09:30

[Guest guest]

Thanks Patersonia

I will have a look at your links and probably do an adrenal test.

It's going to be a long road, but i feel something has to change.

Today i start by reducing the AD tablets. I will be doing it slowly

so fingers crossed.

[Guest guest]

Please consider discussing the other tests with your doctor as well,

not just the adrenal tests. Some times you can be a coeliac with no

symptoms whatsoever. In the end though the choice is yours.

Going off of anti-depressants can be pretty full on, so please do it

with your doctors supervision. I'm not saying this will happen to

you, but I've seen some pretty nasty side effects while people are in

the process of stopping their anti-depressant medication. Please take

care.

P

>

> Thanks Patersonia

>

>

> I will have a look at your links and probably do an adrenal test.

>

> It's going to be a long road, but i feel something has to change.

> Today i start by reducing the AD tablets. I will be doing it slowly

> so fingers crossed.

>

[Guest guest]

--I love your story.And you have your husband to back you too. When I

went to my new Rheumy, I was told by the person that called to remind

me to bring in a list of symptoms.Well,I had kept a journal so I

condenced it and brought it with me. The Dr read it quickly, and

said, " my father had a lot of these problems, and all that was wrong

was depression. " So guess what he gave me, Cimbalta. The new cure

all.When I went back in and said nothing has changed, he upped the

dosage.Back again in three weeks,nothing has changed, so he added

another antidepressant. Oh my gosh,the only time I am depressed is

when I hurt so bad I can't even cry, and leaving his office.I got me

a new Rhuemy, we will see what happens. I laugh at all the new med

advertizements, then the Dr gives me one of those. It is a total

joke. My mom said that is why the Drs are working on practicing, they

keep using people like me to practice on. I think it is so too. I

hurt because I have a disease that runs in the family.Now that my 24

year old son has it, they are starting to practice on him.Poor guy.

If he survives, since he has malabsorbtion problems as well, he will

be going thru years of the " practicing Drs. " It is the biggest mind

twisting disease to live with, then those Drs tighten the screwes. I

am not depressed, but I am being driven MAD!! The crazy kind. I just

laugh anymore, and sometimes right in the Drs face. I can't help it.

It is like putting Bactine on a carbunckle. I actually feel like I

am loosing my mind after a Drs visit. My primary care Dr laughed his

head of the last time I was there, because I passed some pretty big

Kidney Stones, and didn't go to the hospital for Morphine. I told him

I used the Lamaze method, and didn't want to have to answer all those

questions all the people that walk into the room ask,even though I

have my history written down and give that to them to read.So I

stayed home and passed them, and brought them into him to test. But

he loved the fact that I didn't want to have to put up with answering

all those questions.It would be different if they gave you the pain

meds before asking detailed questions, but no,been there done

that,and it was easier to use Lamaze.I have had 4 babies using the

Lamaze method, and went thru those med free too.But yes I love your

story. Now I know I'm not alone. D, in Oregon

- In , " brandnewday13 " <brandnewday13@...>

wrote:

>

> Prior to my last doctors appointment I sat down and tried to

document

> my illness as much as possible. I know I missed a few things

> (probably quite a few...lol) but this was my best attempt with the

> time it took. If anyone else has ever taken the time to write out

> their story, please post. I don't know if this was a good idea or

> not (probably not) because when I got to the doctor, he told me he

> didnt have time to see me because I'm not an average run of the

mill

> patient and recommended I go shopping. (I had drove 2.5 hours, got

> babysitters, etc. only to be turned away and rescheduled a month

> later.)

>

> Brandnewdays Story:

>

> April 4, 2008

>

> Dear Dr.Z,

> Because this has been a rather long and drawn out illness, I

decided

> it would be easier to write my detailed story, rather than trying

to

> remember all the information and the progression on the day of my

> appointment. I was unsure where to start, so I asked my husband

(who

> is a physician and specialist in 3 areas) and he said to start with

> the onset of my symptoms which relate to this illness.

> Last spring 2007, I began to feel strange. I knew there was

> something wrong with me but I did not know what. This all began

after

> I had an extremely violent flu of some sort. I had horrible

> diarrhea, nausea and throwing up, fever, chills, and headache, and

it

> lasted for at least a week. We thought it was viral, but did not

> discount food poisoning. At the time I was doing the Atkins diet

and

> was eating peanut butter frequently. This was during the time of

the

> whole peanut butter recall, and I did have 2 jars of the recalled

> peanut butter in our house. After I recovered from the ¡§flu¡¨, I

was

> tired, and had overall slight joint stiffness. I also began to

have

> tired, scratchy eyes and started using Systane eye drops because of

> the problem. I also got what I thought must be athletes foot on my

> left foot. I used an antifungal spray on my foot and never thought

> that it was in anyway related to anything. This went on all summer,

> and I thought I might just be getting old. ļ

> In August of 2007 we moved to a home which is completely surrounded

> by woods. There are many, many trees and our yard is highly

> landscaped with a pool. Upon moving, I was learning how to

maintain

> our pool pump which of course is in a damp area when I was bit by a

> multitude of mosquitoes. I¡¦d say I had no less than 15 bites on

each

> leg, many around the ankles. They were not normal bites, as they

> swelled up, oozed, scabbed over, and were basically disgusting.

> People commented and asked what happened to me because they looked

so

> bad. No one thought they could only be mosquito bites. I was not

> sick from them, it just looked gross. I do not know that I was

ever

> bitten by a tick.

> Around the beginning of September I was cleaning the leaves out of

> the pool with the pole and the muscle in my right forearm began

> hurting. I noticed that I had the beginnings of a knot that that

> slowly increased in size to about the size of a golf ball cut in

> half. I thought that I had strained a muscle while cleaning the

pool

> and my husband said I had a tenosynovitis in my arm. It moved down

> to the back of the wrist but has never been in my wrist joint

itself,

> just the muscle on the back of my wrist. Shortly after this my

right

> ankle tendon began to be sore all the time. I quit cleaning the

pool

> and it didn¡¦t go away. Over the months it progressed. It moved

into

> my right elbow joint (and is still there) and also moved into the

> back of my hand and my fingers. It never bothered the knuckle

joints

> in my hands, but bothered all of my fingers joints but not my

thumb.

> The muscle in my upper arm only hurt slightly, and was basically on

> the back of my arm, not the front where one considers the actual

> muscle to be. The pain in my right ankle tendon increased, and this

> progression took place through September and October. During this

> time, my eyes got considerably worse; to the point where I was

waking

> up to use eye drops.

> At this point my husband was baffled of what was wrong with me.

> Everything was on my right side and I had even begun to get

headaches

> on the right side of my head. I started researching on the internet

> and unfortunately became convinced that I had Lyme disease. There

> seemed to be no other explanation. My husband was not buying this

> diagnosis and persuaded me to see a Rheumatologist. I ended up

seeing

> one somewhere in Creve Coeur. I can¡¦t remember his name right now

> but I¡¦ll try and look it up and get the information prior to my

> appointment with you and get his records faxed. He did not listen

> well in my opinion as he said on my first visit that I had

> tenosynovitis in my arm (duh!), and sent me on my way with a

> Meloxicam prescription and another appointment in 3 weeks. He spent

> maybe a grand total of 90 seconds in my room. He did draw blood

and

> did one x-ray of my spine. Unfortunately for me, it did not get

> better in this time period, it got worse. The pain, stiffness and

> joint pain in my elbow were fully set in on the right side of my

body

> and now it was moving into the left. It moved worked its way into

the

> left the same as my right, beginning first in the arm and left

ankle

> tendon. It never has been as painful on the left as the right but

> it¡¦s still there. Right now, the only place where I have actual

pain

> and not just stiffness in the left side is my ankle tendon and my

> left SI joint which radiates down my left leg. This is extremely

> uncomfortable when riding in cars and I have to sit kind of

sideways

> in the seat with my weight on the right side if I¡¦m in the car for

> over 15 minutes.

> Anyway, I went back to that Rheumy and tried to explain this all to

> him that it was getting worse and he told me that my blood tests

were

> negative and that I must have Osteoarthritis. (It took him a whole

60-

> 90 seconds to determine this) He gave me a script for Indomethicin

> and pamphlets on Osteoarthritis. My husband knew this was not true

> and since I was convinced I must have Lyme disease, he sent me to

the

> Infectious Disease people at the University of ___. He used to

work

> there and knew they would either confirm or diagnose my real

> condition.

> I will try and condense this as these doctors all kind of run

> together except for Dr. C. I first saw Dr. B who I believe is a

> fellow for Dr. R. I told her all of my symptoms and the fact that I

> was convinced that I had Lyme disease. I also saw Dr. R and told

him

> the same. They ran about a zillion blood tests and I was told to

come

> back for the results in a few weeks. By this time it was the end of

> November. My ankles were to the point where I hobbled along. I

could

> hardly walk in the mornings. I hurt to brush my teeth. It was an

> effort to wash my hair or even push the pump on a spray bottle of

> hairspray because my arms, hands and fingers were so weak. I

dropped

> things. I could no longer pick up my little 3 year old boy. I quit

> cooking and cleaning and hired cleaning people. My mother stayed

with

> us as much as possible and helped me. I had a hard time staying

awake

> to the point where I would rest my eyes at stop signs and ask my

kids

> to tell me when it turned green. I woke up during the nights no

less

> than 8 times a night to use eye drops because of my scratchy eyes

and

> the burning and tingling in my ankles. I had numbness in my hands

and

> they would fall asleep and the pain would wake me up. My right ear

> would ring. I had dull headaches if I didn¡¦t take the medicine on

> time. The worst was when it got to the point where I would fall if

I

> had to get up in the night. My little boy still wakes up and would

> call for me and I had to brace myself to even walk. It was

extremely

> painful and I was to the point where I asked my husband where I

> should go to get crutches because I could no longer walk on my own.

I

> also begged and pleaded with my husband to give me Doxycycline

> because I thought that I must still have some form of Lyme disease.

> He got me a Doxy script on December 10th and I started taking that

in

> addition to the Indomethecin.

> I then went back for my appointment and Dr. B because of a family

> emergency she was gone. Fortunately for me, I saw the fellow of a

Dr.

> C. I told her my story and again, I went on and on that I MUST have

> Lyme disease unless she was going to come up with something else.

She

> went and got Dr. C and he listened to a very short version of my

> story and said that if I don¡¦t get better by January 18th, he

would

> accept me into his Lyme clinic. They also did a bunch of blood

> draws. I waited and waited and finally the 18th came. November,

> December, and January were the worst months but I made it. At my

> appointment, he scheduled 2 hours with me and he sat down with a

> blank piece of paper and listened. I told him everything I have

just

> told you, as well as the fact that I did have an undiagnosed eye

> inflammation that lasted for about 9 months back in 1993. I went to

> no less than 8 eye doctors at Wills Eye Hospital in Philadelphia

and

> they never could diagnose me. It was a red spot on the white of my

> eye. It hurt every single time I moved my eye because it hurt the

> muscle in my eyes. It was sometimes in the right and sometimes in

the

> left and sometimes there were more than one spot on my eyes.

After

> listening to my story, Dr. C did an exam. He poked me all over and

> asked where it did and didn¡¦t hurt. He then asked me, if I had to

> narrow down exactly WHAT my problems were, what do I say? And I

> said, ¡§The backs of my ankles hurt so bad that I cannot walk and

my

> eyes bother me so much that I cannot sleep¡¨. He left the room,

and

> came back 15 minutes later with about 5 doctors and said, ¡§She is

a

> classic Reiter¡¦s Syndrome¡¨. They all then looked at my eyes and

my

> ankles and listened to his much shortened version of my story. He

> then explained it more to me and brought me in something from

> UptoDate Online which even had pictures. I then saw the picture of

> someone with Reactive Arthritis and their feet and I showed him the

> sole of my left foot. A big smile came over his face. He had never

> even looked at the sole of my foot and I think this helped to

> reassure him, not that he seemed to question his diagnosis. I was

> just so overwhelmingly THANKFUL to not have some crazy Lyme disease

> that I burst into tears. It¡¦s still very emotional for me as I

> thought I was crazy for awhile having all these problems and

> everything coming back negative. I didn¡¦t want to have ANYTHING,

but

> I knew that I did and it was a big relief to have a name for

¡§it¡¨.

> Dr. C said that I needed to see a Rheumatologist and an

> Ophthalmologist as he does not specialize in this problem. I then

was

> scheduled a follow up about 6 weeks later with his office.

> After that, I scheduled an appointment with Dr. S, at the

University

> of___ Rheumatologists. I was very excited as my symptoms were

getting

> better, much better and was hoping the whole thing was going away.

> Also, Dr. C had ordered a bunch more blood draws to try and figure

> out what the triggering event was for the Reactive Arthritis and I

> was supposed to get those results. Unfortunately, my appointment

was

> less than helpful. This doctor also did not want to hear my entire

> story. He was short on time, and did little to no exam. When he

> entered the room, he asked why I was there to see him and I said

> because I was told that I have Reiter¡¦s Syndrome and his exact

words

> were, ¡§I¡¦ll be the judge of THAT¡¨. It went downhill from there.

He

> asked me strange questions like ¡§Do you see a lot of doctors¡¨,

> and ¡§Do you take a lot of medications¡¨. I tried to explain to

tell

> him my story and that NO, I do not normally take ANY medications

and

> that I don¡¦t even have a normal doctor because I didn¡¦t have ANY

> medical problems prior to this and he wasn¡¦t all that interested

from

> what I could tell. I told him that my husband had switched me to

> Celebrex because the Indomethicin was causing me to throw up and

have

> an acidy stomach but that I didn¡¦t think the Celebrex worked

anyway.

> He gave me another Celebrex script and told me to take it twice a

day

> instead of once and as for a diagnosis, these are his exact

> words: ¡§I do not like to give people titles or put them into

> categories. I believe you have the symptoms of Reactive Arthritis,

> but I am going to say that you have Undifferentiated Arthritis¡¨.

He

> also went on to babble about the fact that Reactive Arthritis is

rare

> in women and then on and on again about not wanting to put me into

a

> category or assign me a ¡§title¡¨. He then hugged me and assured

me

> that he was sure I would be all better in a week or so and

scheduled

> a check up in I¡¦m thinking 6-8 weeks. I did not go back.

> I did however keep my appointment with Dr. C¡¦s office. I told them

I

> was doing much, much better but still had problems. I told them

that

> at one point I thought I was so much better that I stopped taking

the

> Indomethicin, but was sad to notice that when I did stop, I had

> bladder problems. Mostly that I have urinary urgency, as well the

> inability to ¡§hold it¡¨. (Don¡¦t know how else to describe that)

So, I

> started taking it again, bouncing between that and Celebrex as much

> as my stomach could take it. Also my arm and ankle were still

> hurting, plus the yucky foot has never gone away. I did tell them

> that I¡¦m seeing an Ophthalmologist and my eyes are DRAMATICALLY

> better. They asked for me to PLEASE see try another Rheumatologist

> because they were less than thrilled to hear about my experience

with

> Dr. S, and that they really want me to see someone who specializes

in

> this area for ongoing treatment. I agreed and that is why I am

> coming to see you.

>

> My symptoms/problems as of today 4/4/08, are as follows:

> Pain and swelling in my right forearm muscle.

> Pain in the joint of my right elbow.

> Pain radiating from my left SI joint down my left leg when riding

in

> the car.

> Pain in my ankle tendons, especially at night. Also the pain has

> changed as sometimes it¡¦s not just the tendon on the back of my

ankle

> that hurts but a burning pain on the back and sides of my feet near

> the tendon.

> The inability to take Indo and the fact that I don¡¦t like

Celebrex.

> I don¡¦t know this for a fact, but I believe that I do not sleep

> soundly when I take Celebrex. I have crazy dreams and wake up

> repetitively.

> I am currently not on ANY medications (HURRAY!) except for

> Azithromycin because I have an ear infection. I quit taking all

> medication on Tuesday because I had a viral flu (everyone in my

house

> had it) and was unable to eat. None of my symptoms are unbearable

and

> I would like to remain medication free as much as possible. I am

> THRILLED to find out that the bladder control problems are gone as

> that was a real pain. I am hopeful that I am putting this all

behind

> me. I have 3 kids, a house, a husband who has to work a lot, some

> serious yard work to keep up with and I don¡¦t have time to be ill!

> Thank you for seeing me and I really thank you for taking the time

to

> read all of this.

>

[Guest guest]

Hi Joni,

We would love to hear your story, as this is a learning group also.

We are all learning about dealing with out health issues. There are

some Drs and Naturpath's on this list also that I have seen. I cannot

take iodoral(the pill,I get a stomach ache) however I do take Lugol's.

(liquid form)

I think that people who routinely email people offlist is

counterproductive.

So please, share with us...We won't bite, I promise D

>

> Hi D,

>

>

>

> There are people who do not want to " tell their story " because they

think

> other people will bash them. I know..I'm one of those that think I

will get

> bashed.

>

>

>

> Every group list I am on and every one I have been on it's the

same. When

> someone posts an answer to someone's questions or even just makes a

> statement, there is always at least one person who will come down

on that

> person telling them they are wrong and then proceed to tell how they

> themselves are right. I swear..every list I've ever been on is

this way.

>

>

>

> I'm thinking right now about the goat list I am on. Every question

I have

> asked, almost every single time at least one person will write to me

> personally to give me their answer. And they tell me the reason

they are

> writing me personally instead of to the list is because they don't

want to

> be bashed or to be made to look stupid. This is sad and shouldn't

be.

>

>

>

> I feel the same way. I do have a story, but my experience is not

the same

> as most on this list. I had a very bad experience with Iodoral.

If others

> have had good experiences, great. I have not. I am not putting

anyone down

> here, just letting you know why some do not tell their stories.

>

>

>

> Joni

>

[Guest guest]

I do remember your story Joni. Thanks for sharing again. There is one thing you can think about doing. I am not sure exactly of the test but Dr. Shevin has begun to test bromide levels in the blood stream. You may be able to have it tested to see if you are in fact bromide toxic. Have you had your cortisol levels checked to determine if they are on the edge? Maybe that is the next step.

I have to say that it is a very difficult thing to deal with when people ask what to do next. It's kind of unfair to do that in a way. It has to be an individual's decision to dare to try to increase. Yes dare because in some cases you could have a reaction like Joni did. Even though Dr. Brownstein told me to increase to 100 mgs he left it up to me to decide if I was comfortable with this. It's the same here. No one here can make you do something out of your comfort zone. Only you know your body.

I am sorry you asked for info and did not get it. If you look at the history of the group posts there are many times no one answers and if I don't it doesn't get answered. Maybe that's why I get blamed for a lot because I am the only one many times that does answer. But there are times when my own life gets away from me and I cannot do it all. That is why I asked to help me with the "new member" questions. It's still a big responsibility to keep up with over 1700 members all with varying stories.

Also, another issue with me is that I have my experience from the Iodine team - Brownstein, Abraham, Flechas and Shevin. That is really all I know and it worked for me so naturally that is what I will recommend. It is my comfort zone. It works for most but for some it does not. Therein lies the problem. How do we deal with those that it does not work for? Frustration begins on the part of the individual with the issue when there are no answers and no one offers anything. I am glad that hire has stepped in with his Nascent Iodine which is an option for some too.

I don't know what the answer is to our issues here. This is the problem with a large group looking for individual help. It isn't possible to give that finite detailed advice.

So where do we go from here? Keep sharing your stories, findings, experiences. I will never belittle you for having a reaction. Covey has a great saying "Seek first to understand and then to be understood." I think that applies here. I hope we can do a better job of that in the future.

RE: Re: My story

Hi all,

Ok, you talked me into it…LOL! But really, most of you already know most of it already but have forgotten or just missed my posts. It’s in the archives somewhere I’m sure.

After writing about my experience with Iodoral several people replied and over time I just stopped posting.

First, I have exhausted adrenal glands and also hypothyroidism. I don’t have Hashi’s. I have never been on medication for either of those and am not on any now. I am on the natural adrenal and thyroid group lists. That’s how I found out about this list. Before joining this list I had read Dr. Brownstein’s book and did quite a bit of researching online on iodine. I began to believe I was deficient in it. I also had the iodine loading test done before joining this list. In fact I had asked on the thyroid list where to have it done and I used the company she suggested. My test came back 65%.

I was convinced that I should start taking Iodoral. I started taking one 12.5 tablet once a day and worked myself up to taking a tablet twice a day. I didn’t see any improvement so I joined this list to find out more about iodine. After reading that so many of you were taking up to 100mg. and even more, I asked if I could up to 50 mg or wait a bit.

I was told to go ahead and try it.

I guess most would be able to tolerate that dosage but not me! The day that I took a third tablet I was home alone and I started to feel very nauseated and weak. I immediately went onto this list and told what was happening to me. I was told to do the salt flush which I did. I continued to get so sick and weak I could barely move. I just sat down on the couch and stayed sitting for hours not able to do anything. My husband called me on his way home and all I had to do was reach over about a foot to the phone right next to the couch where I was sitting, but I couldn’t make myself to do that until the answering machine came on. It took that long.

My husband couldn’t understand me. He is a fireman, so he called the chief and his wife who are both EMT’s and asked them to come over and check on me. By the time my husband got home they had already called the ambulance.

She said I was incoherent, my blood pressure was 178/80,

I was extremely weak…I couldn’t even move my head to look at anyone, even my husband when he got home. You can imagine how he must have felt when he was on his way home and over his pager he heard the call for an ambulance at our home. I was also extremely nauseated but I never did throw up. Even talking was extremely hard to do. After the ambulance EMT’s gave me oxygen my blood pressure started to go back down. They wanted to take me in of course (they always do) but my husband said he would do it. We waited a little bit and since my blood pressure kept improving we decided not to go in.

The main reason I didn’t want to go to the hospital was because I was sure what I was experiencing was bromine coming out too fast. Well, after reading more on bromine I’m pretty sure this wasn’t it. The symptoms of bromine being released too fast is not what I experienced.

I asked what the symptoms of an allergy reaction would be to iodine on this list and no one replied. Someone else posted and said they would like to know the answer to that question also and they did not get a reply either.

I do not know to this day if I am allergic to iodine, nor do I know what happened to me. Val the list owner on the adrenal list said it sounded to her like I had an “adrenal meltdown”. My adrenals couldn’t take that much iodine.

I have considered starting Iodoral again and just maintaining a low dosage, but frankly I am too scared to try any amount at all after what I went through. Personally, I feel much research needs to be done before one starts taking iodine. I am not saying no one should take it, but for those like me that may not be able to take it for whatever reason, maybe going slow is a good thing. After all, most people wouldn’t know if they are able to take iodine until they try it. There is so much that is not fully known yet. Naturally when someone has a good experience concerning something they are prone to encourage others to do what they did. Also, when others have a bad experience they are prone to suggest others to think again.

We are all different and each of us has specific needs in the health department. Some people have allergies to foods, or animals, or even to the dust in their homes. Before we get too carried away on some new thing to try, let’s do some research and then some more. Believe me, I’m speaking to myself.

Joni

[Guest guest]

I could not tolerate Armour thyroid, or very much of it, b4 I got adrenal support (cortef) AND estrogen/progesterone/testosterone. I am sure I would not have tolerated iodine either, if I hadn't had these things. The testing that finally helped me was from a Broda doc http://www.brodabarnes.org

from here http://www.antibodyassay.com

If you know you need adrenal meds, why not take them? Cortef is very safe.

Gracia

Hi all,

I was so concerned in writing about my experience because I was afraid that I would leave something out that needed to be said, or that I would offend someone someway. I did forget something that I really wanted to say. I do not blame anyone on this list for what happened to me. I hope I didn’t come across that way. I intentionally left out names. I take full responsibility for my upping my dosage. No one forced me to do that. I believe that I should have done more research before even starting on Iodoral.

, I agree with you on the bromide testing. I have heard about that and I am very interested to know what my bromide level is.

When I had ZRT labs check my adrenals, (which I have had done three times) my cortisol level is way low in the morning which is normal for adrenal fatigue. I know about Armour and have considered starting on that. But I am hesitant in taking it right now.

I am currently doing more research on iodine and have remained on this list to glean from you all. It’s wonderful that most of you have found help in taking iodine. I do hope though that those that are considering taking it, reading what others have experienced, doing research is so important and maybe going slow with the dosage. Maybe you are one who just can’t take it.

Joni