HELP!

April 19, 2009

Hi Sheila, thanks for you reply. I spoke to Dr P on weds, he said I should get

tested for diabetes (GTT). I asked whether aldosterone could be the problem but

he said it was unlikely and he wouldn't advise I start taking florinef without

seeing him first, will probably have to make an appointment to see him in a few

weeks. I rang my GP and asked for GTT and have an appointment to have it done on

the 5th May, will be a while before I get results, he is also going to test

thyroid and ferritin. I wonder if it is worth getting my electrolytes tested as

well as according to my scales am gradually losing water despite drinking alot

but I seem to be urinating more than I'm drinking. I am dizzy when I stand up

but have been for a while, also pupil reflex doesn't seem to be quite normal,

this might be because of slight dehydration though? I'm very tired and have a

'muzzy' head. Looking on net, diabetes can go hand in hand with thyroid problems

and can cause dehydration as well as constant feeling like i need to urinate

although it seems it happens during the night as well and I don't have to get up

in the night to 'go'. I have thought it odd since these symptoms started that it

doesn't bother me at night, as in I don't get woken up by it. I am not drinking

any tea or coffee or anything with caffeine in it, just plain water. Despite

drinking alot, still get puffinness in face and ankles towards the end of the

day. I am concerned that Dr P said it could be diabetes, obviously nobody wants

to be diabetic ha ha but with no history of diabetes in my family am not too

concerned, however I would like to know why I am feeling the way I do and GPs

have no answers. Thinking back to when my symptoms worsened (about three days

after) I went out for the first time in 7 years and went a bit mad with the

alcohol, had about 15 bottles of smirnoff ice which is full of sugar (about 350g

glucose in there altogether i reckon) and if I am diabetic certainly wouldn't of

helped matters. I have often wondered if I have a degree of insulin resistance

because I have known for a while even moderate amounts of carbohydrates in one

go cause me problems and avoid sugar and I still have to eat regulary else I

feel worse but I have put that down to adrenals. If I am diabetic I know I'm

doing all I can to help myself (apart from that one night of drinking ha ha). In

the meantime I still feel like I need to urinate all the while which is driving

me mad as well as making life very difficult, I've had to travel to appear in

court as my uncles funeral is on weds, don't know if i'll be able to make it.

Thank you for your reply X

>

> Your frequent need for urination could be low aldosterone. Those folk with

> low aldosterone are unable to retain sodium, and it spills into the bladder,

> taking water with it. This results in frequent urination, dehydration, and

> heat intolerance. Electrolytes become imbalanced, resulting in muscle

> twitches, heart palpitations, and the pupils of the eyes are unable to stay

> " c

April 21, 2009

Hi Ruth

Sorry can't respond at length right now. However, I

wouldn't start worrying about what you should and shouldn't do until you get

your blood test results, and we can take it from there. Can you get tested to

see if you suffer from low aldosterone meanwhile?

Luv - Sheila

I have often wondered if I have a degree of insulin resistance because I have

known for a while even moderate amounts of carbohydrates in one go cause me

problems and avoid sugar and I still have to eat regulary else I feel worse but

I have put that down to adrenals. If I am diabetic I know I'm doing all I can to

help myself (apart from that one night of drinking ha ha). In the meantime I

still feel like I need to urinate all the while which is driving me mad as well

as making life very difficult, I've had to travel to appear in court as my

uncles funeral is on weds, don't know if i'll be able to make it. Thank you for

your reply X

May 27, 2009

Hi Pamela:

I live in Pittsburgh and go to an holistic doctor, Dr. Goldstein. His office is in Wexford, PA, (724) 934-7780, which is about 20min. north of downtown.

I have Hasimoto's and he has really helped me get on track with Armour, Iodoral and other supplements my body needed, according to blood test results. The only negative thing is that my insurance does not cover these visits. I still think he is worth the price I pay.

Good luck to you and your family,

From: ladybugsandbees <ladybugsandbees@...>Subject: Re: HELP!iodine Date: Wednesday, May 27, 2009, 11:53 AM

Yes Iodine therapy can help. If she lives in Pittsburg she is in a very toxic city. Lots of pollution from the steel companies. Odds are she needs a good liver detox (check out Gerson therapy as this is part of their healing protocol). The thyroid enlarges to capture more iodine to make thyroid hormone. Since she is already hypo this is apparent she needs more. The nodules occur when bad cells replicate and do not die as they should. Iodine activates the P53 gene (guardian of the genetic code) which causes apoptosis (cell death) of abnormal cells. Without enough iodine the cells will not die. You can see the protocol I recommend on my website www.naturalthyroidc hoices.com as well as the thyroid supporting nutrients that can be added to the bare minimum.

Check out www.breastcancercho ices.org for the iodine section / practitioners that are near her that may be able to help.

HELP!

I'm sitting here somewhat in disbelief. The search function on appears to not be working for messages posted after mid-March so I can't search to see if I've posted here about this before.My mother just called me. She had ultrasounds of her thyroid and liver done on May 13. She just got the results today.Tumor - probably benign - on her liver. Needs to see an endo about it, though.Multiple nodules on her thyroid - too small to biopsy, apparently. Supposed to see an ENT about it.I already know from reading on various groups that the typical medical response is to cut first and question later. I've read too many stories of people who have lost their thyroid, only to discover that the nodules were not cancerous.I've also read about the iodine-thyroid cancer connection. I am obviously no expert but I know that some claim to have cured thyroid cancer through non-invasive means using supplementation.

If a person does not know whether they have cancer, though, does it have any impact on the presence of nodules? What causes the nodules and what can be done about them short of eliminating the gland they inhabit?She is a relatively healthy almost 70 year old. Still works full-time in a law firm. Not on any medication other than Armour, which she started just last month and which is at a tiny dosage at this point (I think 1/4 grain?). Was diagnosed as hypo last year but tried to address it on her own using Iodoral but I think she was taking only one per day and from what I've read here, that was likely too little to do any good for her. Her previous 5.something TSH from last year was 10.something last month at her physical.She lives in Pittsburgh (actually the South Hills area of Pittsburgh but willing to travel a bit for treatment. Any suggestions for doctors? If this were your mother, how would you advise her? Just can't believe

I am still getting used to my husband's thyroid cancer diagnosis 6 weeks ago and now we might be going through it again with my mother. He opted for total conventional treatment and I'm hoping I can convince my mother to do otherwise.I am posting this on multiple groups so please forgive the double posts if you are on those same groups.Pamela

June 5, 2009

Thank you, . I just saw your email for the first

time. I had heard about Dr. Goldstein and knew he was in Wexford but

couldn’t remember his first name. I’ll forward his contact information

on to my mother.

Pamela

From:

iodine [mailto:iodine ] On Behalf Of

M.

Sent: Wednesday, May 27, 2009 10:39 PM

iodine

Subject: Re: HELP!

Hi Pamela:

I live in Pittsburgh and go to an holistic doctor, Dr.

Goldstein. His office is in Wexford, PA, (724)

934-7780, which is about 20min. north of downtown.

August 26, 2009

Hi Shelia

Thankyou for your kind advice. Can you tell me where I can get the adrenal test done and is 1300+ of antibodies high? Also, do you know whether I am legally entitled to call the doctors surgery and request a copy of my blood tests without asking the doctors permission? I am getting the feeling from my doctors that they don't like me investigating things for myself and so I would really prefer not to have to ask the doctor.

Once again thankyou for your advice

Tx

From: Sheila <sheila@...>thyroid treatment Sent: Monday, August 24, 2009 7:15:59 PMSubject: RE: Help!

Hi Tricia - first, PLEASE will you leave a space between paragraphs as not doing so makes reading messages difficult - our eyes cannot take in so much information when the words are all crammed together - we need breaks in-between. Writing this way causes a lot of other members too 'switch off' and pass your message by. This really IS important.

I am shocked that after your GP found large amounts of antibodies to your thyroid, when you were pregnant, that he offered you no treatment or advice. Did he test your Free Thyroxine (FT4) and Free Triiodothyronine (Free T3). The baby uses your thyroid hormones whilst it is growing in the womb - and your doctor should have sent you to a thyroid specialist as soon as he found this problem. I am so sorry to hear you lost your baby, but can understand why. You would feel better afterwards because you would have started to use your own thyroid hormones again.

Ask your doctor to refer you to a thyroid specialist - he is not a specialist and should realise this. I wonder whether you are either allergic to some of the fillers in the levothyroxine tablets (lactose, maize) may be causing the problem regarding the diarrhoea etc - or even whether you ARE hypothyroid.. You need your GP to test your Free T3 and Free T4 to see where in the reference range these lie. If these are very high and your TSH is low, you may be hypERthyroid which could account for the diarrhoea and losing weight, plus your menstrual problems, mood swings, insomnia, heat intolerance, constant palpitations. You should also beg, borrow or steal if necessary the money (£70) to get the full 24 hour salivary adrenal test done to see where your cortisol and DHEA levels lie at four specific times during the day. The NHS test does not test for adrenal insufficiency, only for

's and Cushing's syndrome - the two extremes.

Get the suggested tests done and post the results here together with the reference range, and ask your doctor for a referral to an endocrinologist as a matter of urgency.

Luv - Sheila

After a while I went back to the doctor who did more tests including kidneys and liver as I worried about the affect the diarrhoea was having on me but it all came back `normal' so the doctor suggested we increase the dose to 75mg as he believed I may need to be in the lower end of the thyroid hormone scale. Although the diarrhoea eased somewhat other things became really bad; I was having constant palpitations, suffered from insomnia, couldn't bear being in the heat as I was literally dripping with sweat but when I was in the shade I was shivering and felt cold. My mood swings were unbearable and I was constantly in tears. Whenever I stood up or bent over I felt dizzy and light headed.

August 26, 2009

Hi Tricia

Please can you remember to delete all the messages that have

been read before clicking ['Send' and leave just a small portion of what you

are responding to as I have done here.

You can get the 24 hour salivary adrenal profile done through

Genova Diagnostics www.gdx.uk.net and

yes, 1300 + is high. You ARE entitled to receive all your blood test

results - this is law and your doctor cannot withhold these. Go to our FILES

section of this forum web site and look at Information for Patients Folder and

in there, you will find a file which sets out what patients are entitled to and

what they are not within the NHS. I would telephone the surgery and whoever

answers just say " my name is **** and I live at ***** and I would like a

copy of my last thyroid function test results, together with a copy of the

reference range for each of the tests. I will call in for them on ***** so

please will you arrange for these to be left in reception so I can pick them

up. Many thanks "

If your doctors enquire why you need them, say that you are

keeping a medical diary to see if there is a pattern to what is happening - but

basically, you don't have to tell them a thing. You are entitled to these http://f1.grp.fs.com/v1/oAeVSpJHJBbMlbEsqppuiGoiz1UO4uDHw5snEUKB03S7o12zYV3fwOQqACTTCKvAqEe8Jmb_nDlwbm5zTeb6Yw/NHS%20TREATMENT/KNOW%20YOUR%20RIGHTS%20WITHIN%20THE%20NHS.doc

- On the page that opens, go down to 'Access to Medical Records…. "

Luv - Sheila

Thankyou for your kind advice. Can you tell me where I

can get the adrenal test done and is 1300+ of antibodies high? Also, do

you know whether I am legally entitled to call the doctors surgery and request

a copy of my blood tests without asking the doctors permission? I am

getting the feeling from my doctors that they don't like me investigating

things for myself and so I would really prefer not to have to ask the doctor.

August 26, 2009

Hi There

Thankyou for your response. Do you know how they can supress the antibodies? I'm not getting any younger and so time is of the essence however it seems like it is mission impossible to feel better let alone conceive again.

Best Wishes

Tricia

From: judith franklin <angel47572000@...>thyroid treatment Sent: Wednesday, August 26, 2009 1:32:52 PMSubject: help!

Hi there , I think you have what doctors call "postpartum thyroiditis" google and read all you can. if you have high autoantibodies this will be the cause of the miscarrage and you will not have a healthy baby until

August 26, 2009

Hi Tricia,

Can’t remember if you have seen an endo? There is a treatment

for hyper called block and replace in which the overactive output is blocked

with antithyroid meds such a carbimazole and the thyroid meds given to

stabilise it all. Try www.thyroidmanager.com which is aimed at the medical

profession so can be a heavy read, but very useful.

Re: help!

Hi There

Thankyou for your response. Do you know how they can supress the

antibodies? I'm not getting any younger and so time is of the essence

however it seems like it is mission impossible to feel better let alone

conceive again.

Best Wishes

Tricia

August 26, 2009

Hi Tricia

The best way is to treat with thyroid

hormones and to start as soon as possible. Read what Dr Lowe has to say in

response to a similar question: http://www.drlowe.com/QandA/askdrlowe/antibody.htm.

You should definitely be

treated if you become pregnant as the baby uses your thyroid hormone until it

is able to make its own. Have a look at this link http://thyroid.about.com/cs/pregnantfertility/a/2004guidelines.htm

Luv - Sheila

Thankyou for your response. Do you know how they can

supress the antibodies? I'm not getting any younger and so time is of the

essence however it seems like it is mission impossible to feel better let alone

conceive again.

Best Wishes

Tricia

December 29, 2009

well i cannot say if this happened to my kids or not on iodoral cause we did not do any ultrasounds after starting iodoral...but i do know my daughters antibodies are lower now while on it..

i believe i have read that stephanie said the thyroid gland may enlarge while on iodine for a time as it is trying to capture more iodine?? or something like that!!

i have all of my 5 kids on iodine protocol including selenium....ages range from 11-25...

From: jdakarthur <jdakarthur@...>Subject: Help!iodine Date: Tuesday, December 29, 2009, 3:53 PM

My 3 children- 2 teens and an 8 year old were on Iodoral for a year- high doses to try and correct Hashimotos "looking" thyroids ( even though none of them tested positive for the thyroiditis antibodies- I believe becaseu they have always taken selenium which is supposed to prevent thyroiditis) In the process, our pediatritian who recommended Iodoral, tracked their thyroids. Their glands all greatly enlarged on the iodine and all of them had high serum thyroglobulin only while on the Iodoral. Most docs don't even know about serum thyroglobulin (it is different then the thyroiditis markers) so don't know to check for it, but he says that it means the thyroid is "leaking". It would always coincide with how much iodine they were taking- lots of iodine= enlarged, cystic thyroid gland and high serum thyroglobulin. When going off of the iodine= gland would shrink and serum thyroglobulin would go to normal range. What is this?? Is this the bromide, floride

detox reaction of the thyroid gland by the iodine, or is it a allergic/ sensitivity to the iodine?Dr. Flechas was perplexed- we then switched to Iosol, which is not potasium iodide which for some can be irrating to the thyroid. Why is this never discussed in Iodine circles? I am thinking that I have damaged my children's thyroids. Has anyone experienced this? Is it normal for the gland to enlarge and get cystic while going through a "detox" stage? I am scared to try Iodoral again. They did test positive for symporter defect but we are taking the b2 and niacin and zinc to offset that. Their thyroids just don't seem to uptake the iodine. I am sure we aren't an isolated case. Anyone else experience this?Thanks!

December 30, 2009

For a symporter defect, you need to add salt (pure, unbleached, unrefined like

Celtic salt) and high dose vitamin C. I read an article on this a few months

ago--can't remember which website. The article was written by one of the iodocs,

perhaps Dr. Brownstein. Maybe the Optimox website or breastcancerchoices.org.

Carol

>

> My 3 children- 2 teens and an 8 year old were on Iodoral for a year- high

doses to try and correct Hashimotos " looking " thyroids ( even though none of

them tested positive for the thyroiditis antibodies- I believe becaseu they have

always taken selenium which is supposed to prevent thyroiditis) In the process,

our pediatritian who recommended Iodoral, tracked their thyroids. Their glands

all greatly enlarged on the iodine and all of them had high serum thyroglobulin

only while on the Iodoral. Most docs don't even know about serum thyroglobulin

(it is different then the thyroiditis markers) so don't know to check for it,

but he says that it means the thyroid is " leaking " . It would always coincide

with how much iodine they were taking- lots of iodine= enlarged, cystic thyroid

gland and high serum thyroglobulin. When going off of the iodine= gland would

shrink and serum thyroglobulin would go to normal range. What is this?? Is this

the bromide, floride detox reaction of the thyroid gland by the iodine, or is it

a allergic/ sensitivity to the iodine?

>

> Dr. Flechas was perplexed- we then switched to Iosol, which is not potasium

iodide which for some can be irrating to the thyroid. Why is this never

discussed in Iodine circles? I am thinking that I have damaged my children's

thyroids. Has anyone experienced this? Is it normal for the gland to enlarge and

get cystic while going through a " detox " stage? I am scared to try Iodoral

again. They did test positive for symporter defect but we are taking the b2 and

niacin and zinc to offset that. Their thyroids just don't seem to uptake the

iodine. I am sure we aren't an isolated case.

>

> Anyone else experience this?

>

> Thanks!

>

December 30, 2009

It's on Optimox.com

Steph

Re: Help!

For a symporter defect, you need to add salt (pure, unbleached, unrefined like Celtic salt) and high dose vitamin C. I read an article on this a few months ago--can't remember which website. The article was written by one of the iodocs, perhaps Dr. Brownstein. Maybe the Optimox website or breastcancerchoices.org.Carol>> My 3 children- 2 teens and an 8 year old were on Iodoral for a year- high doses to try and correct Hashimotos "looking" thyroids ( even though none of them tested positive for the thyroiditis antibodies- I believe becaseu they have always taken selenium which is supposed to prevent thyroiditis) In the process, our pediatritian who recommended Iodoral, tracked their thyroids. Their glands all greatly enlarged on the iodine and all of them had high serum thyroglobulin only while on the Iodoral. Most docs don't even know about serum thyroglobulin (it is different then the thyroiditis markers) so don't know to check for it, but he says that it means the thyroid is "leaking". It would always coincide with how much iodine they were taking- lots of iodine= enlarged, cystic thyroid gland and high serum thyroglobulin. When going off of the iodine= gland would shrink and serum thyroglobulin would go to normal range. What is this?? Is this the bromide, floride detox reaction of the thyroid gland by the iodine, or is it a allergic/ sensitivity to the iodine?> > Dr. Flechas was perplexed- we then switched to Iosol, which is not potasium iodide which for some can be irrating to the thyroid. Why is this never discussed in Iodine circles? I am thinking that I have damaged my children's thyroids. Has anyone experienced this? Is it normal for the gland to enlarge and get cystic while going through a "detox" stage? I am scared to try Iodoral again. They did test positive for symporter defect but we are taking the b2 and niacin and zinc to offset that. Their thyroids just don't seem to uptake the iodine. I am sure we aren't an isolated case. > > Anyone else experience this?> > Thanks!>

December 30, 2009

We have tried that, but I will try again. We use Celtic sea salt, but I did lower the C dose to 750 mg. Thanks for the reminder:)

In a message dated 12/30/2009 2:12:46 P.M. Central Standard Time, carold@... writes:

For a symporter defect, you need to add salt (pure, unbleached, unrefined like Celtic salt) and high dose vitamin C. I read an article on this a few months ago--can't remember which website. The article was written by one of the iodocs, perhaps Dr. Brownstein. Maybe the Optimox website or breastcancerchoices.org.Carol>> My 3 children- 2 teens and an 8 year old were on Iodoral for a year- high doses to try and correct Hashimotos "looking" thyroids ( even though none of them tested positive for the thyroiditis antibodies- I believe becaseu they have always taken selenium which is supposed to prevent thyroiditis) In the process, our pediatritian who recommended Iodoral, tracked their thyroids. Their glands all greatly enlarged on the iodine and all of them had high serum thyroglobulin only while on the Iodoral. Most docs don't even know about serum thyroglobulin (it is different then the thyroiditis markers) so don't know to check for it, but he says that it means the thyroid is "leaking". It would always coincide with how much iodine they were taking- lots of iodine= enlarged, cystic thyroid gland and high serum thyroglobulin. When going off of the iodine= gland would shrink and serum thyroglobulin would go to normal range. What is this?? Is this the bromide, floride detox reaction of the thyroid gland by the iodine, or is it a allergic/ sensitivity to the iodine?> > Dr. Flechas was perplexed- we then switched to Iosol, which is not potasium iodide which for some can be irrating to the thyroid. Why is this never discussed in Iodine circles? I am thinking that I have damaged my children's thyroids. Has anyone experienced this? Is it normal for the gland to enlarge and get cystic while going through a "detox" stage? I am scared to try Iodoral again. They did test positive for symporter defect but we are taking the b2 and niacin and zinc to offset that. Their thyroids just don't seem to uptake the iodine. I am sure we aren't an isolated case. > > Anyone else experience this?> > Thanks!>

July 9, 2010

I see clients in the Detroit area about once a month.

Joan

Joan Agosta, M.Ed.

Learning Specialist

MNRI Specialist in training

Certified Brain Gym Instructor

3-304 Stone Rd. W., suite 188

Guelph ON N1G 4W4

Tel. 519 822 4491

Fax 519 822 4466

Email joan@...

Visit our website at www.joanagosta.ca

____________________________________________________

We do not support spam. If you received this correspondence in error, please accept our apologies. Let us know and we will remove you from our list. To unsubscribe please reply to this message with the word "unsubscribe" in the subject. Thank you.

On Fri, 09 Jul 2010 14:33:20 -0000, playparent wrote:>> HI Everyone! I am looking for a practitioner in or around Marshal,> Michigan. Any help will be appreciated.>>>

August 16, 2010

Leg Cross Flexion, Babinski, . These reflexes are associated with both hip tension and bed wetting. The specific muscles involved include Psoas, Piriformis, Peroneus and Erector Spinae.It is a little startling to hear that your Chiropractor said he cannot lower the tone of the hip muscles as this is a routine matter. If possible, it may be worth your while to get a second opinion, perhaps from a Chiropractor with some Applied Kinesiology training.

-- Esty 415.350.4868 Web: http://www.organicbalance.us Blog: http://bodywrk.blogspot.com/

Tweets: http://twitter.com/bkesty HIPPA Requirement: This email and any associated files may contain confidential information that is legally privileged or otherwise protected.

August 16, 2010

Yes, I agree with . Look for a chiropractor that

specializes in Applied Kinesiology and they should be able to figure out how to

help.

R. son

Doctor of Chiropractic

1175 Saratoga Avenue, Suite 8

San , CA 95129

408-517-0706

www.jamiesonhealthcenter.com

From:

[mailto: ] On Behalf Of Esty

Sent: Monday, August 16, 2010 6:00 PM

Subject: Re: HELP!

Leg Cross Flexion, Babinski, . These reflexes are associated with both

hip tension and bed wetting. The specific muscles involved include Psoas,

Piriformis, Peroneus and Erector Spinae.

It is a little startling to hear that your Chiropractor said

he cannot lower the tone of the hip muscles as this is a routine matter. If

possible, it may be worth your while to get a second opinion, perhaps from a

Chiropractor with some Applied Kinesiology training.

--

Esty

415.350.4868

Web: http://www.organicbalance.us

Blog: http://bodywrk.blogspot.com/

Tweets: http://twitter.com/bkesty

HIPPA Requirement: This email and any associated files may contain confidential

information that is legally privileged or otherwise protected.

August 16, 2010

Thanks so much for your advice.

Iris

From: drjamieson@...Date: Mon, 16 Aug 2010 19:23:44 -0700Subject: RE: HELP!

Yes, I agree with . Look for a chiropractor that specializes in Applied Kinesiology and they should be able to figure out how to help.

R. son

Doctor of Chiropractic

1175 Saratoga Avenue, Suite 8

San , CA 95129

408-517-0706

www.jamiesonhealthcenter.com

From: [mailto: ] On Behalf Of EstySent: Monday, August 16, 2010 6:00 PM Subject: Re: HELP!

Leg Cross Flexion, Babinski, . These reflexes are associated with both hip tension and bed wetting. The specific muscles involved include Psoas, Piriformis, Peroneus and Erector Spinae.

It is a little startling to hear that your Chiropractor said he cannot lower the tone of the hip muscles as this is a routine matter. If possible, it may be worth your while to get a second opinion, perhaps from a Chiropractor with some Applied Kinesiology training.

-- Esty 415.350.4868 Web: http://www.organicbalance.us Blog: http://bodywrk.blogspot.com/ Tweets: http://twitter.com/bkesty HIPPA Requirement: This email and any associated files may contain confidential information that is legally privileged or otherwise protected.

August 7, 2011

I am newly re-diagnosed with Reactive Arthritis. I guess I've had it since

adolescence but had been under the impression that it went away. I realize now

that is a bunch of phooey and that indeed I have been suffering the symptoms all

along only attributing them to other issues.

Here is my problem. I am in horrible pain. My hips, and feet are currently

effected. I'm on steriods, methotrexate, and folic acid. To no avail. It's not

getting any better. I'm so frustrated. Can anyone give me any ideas. My

rheumatologist is supposed to be one of the leading specialists of the field but

it has been 3 weeks since I saw him without much improvement. In fact, It might

be worse. This is interrupting my sleep. I've been prescribed every kind of pain

killer and frankly- it doesn't work.

I have been missing lots of work too. This is a problem for me, but I find

myself absolutely exhausted by 3pm, and Thursday & Friday are nearly impossible

for me to navigate.

Can anyone help me figure out how to get to feeling better quickly?

Thank you,

-p

August 9, 2011

I've tried everything including one year on antibiotics (doxy and

rifampin)...nothing helped. Instead of taking Methotrexate and other immune

altering drugs -- I found pain relief in pain killers -- Tramadol and Percocet.

Others may have issues w/ this approach...but I've tried them all.

Sent via BlackBerry by AT & T

HELP!

August 9, 2011

Hi Phoebe,

Â

Sorry to hear about your plight. You sound like me almost 2 years ago. Some of

the things that might help are as follows:

Â

1. Work with your physician and help them understand your issues. Its time to

call and say you are in terrible pain and need help.

2. Work with your physician to increase the dose of prednisone right away. That

should help almost right away. A word of caution: Don't stay on prednisone too

long (taper dose), it can seriously weaken your muscles and affect your heart

and lungs if you stay on it for 2 years or more.

3. Choose the right pain meds. I was on nabumetone (aka ralafin) and still in a

lot of pain. I went to Vimovo and that has helped me tremendously.

4. See if your physician recommends injectable DMARDs like Humira or Enbrel.

That should also help. Before you start the meds, make sure they do your blood

work and check for some critical things and to ensure that the drugs will be

right for you.

5. Once you feel a little bit better, start an exercise regimen and take control

of your diet. Try to eat more healthy foods, slowly reduce the amount of white

flour and sugars. If you are overweight, try to get within a healthy weight

range. Eat more fresh foods and try to eliminate as many processed foods as

possible. Start juicing using fresh fruits and vegetables. I find that

maintaining a healthy lifestyle helps keep my disease under control.

Unfortunately, there is no cure or magic pill; all you can do is keep things

under control.

Â

Good luck and I hope you feel better soon.

Mr O from IL

Â

From: Phoebe <phoebe214@...>

Sent: Monday, August 8, 2011 12:11 AM

Subject: HELP!

Â

I am newly re-diagnosed with Reactive Arthritis. I guess I've had it since

adolescence but had been under the impression that it went away. I realize now

that is a bunch of phooey and that indeed I have been suffering the symptoms all

along only attributing them to other issues.

August 9, 2011

Thank you everyone for the feedback. It sounds like a most difficult condition

to have to cope with continuously. Does it get better? I mean with the

treatments do you find that it transitions into " quote " " unquote " remission. Is

there a " norm " or is so individualized that it is vastly different from person

to person.

Just to put it out there. This sucks! I'm sorry. I appreciate that you are all

willing to reach out because while my mother has RA she doesn't have this- I

don't know which is worse. Like it really matters?

Phoebe- Aberdeen, WA

August 9, 2011

Harv:

How often do you go for the infusions? Are they painful? Any side effects?

Happy to hear something works for some.

Thx.

Sent via BlackBerry by AT & T

HELP!

I am newly re-diagnosed with Reactive Arthritis. I guess I've had it since

adolescence but had been under the impression that it went away. I realize now

that is a bunch of phooey and that indeed I have been suffering the symptoms all

along only attributing them to other issues.

Here is my problem. I am in horrible pain. My hips, and feet are currently

effected. I'm on steriods, methotrexate, and folic acid. To no avail. It's not

getting any better. I'm so frustrated. Can anyone give me any ideas. My

rheumatologist is supposed to be one of the leading specialists of the field but

it has been 3 weeks since I saw him without much improvement. In fact, It might

be worse. This is interrupting my sleep. I've been prescribed every kind of pain

killer and frankly- it doesn't work.

I have been missing lots of work too. This is a problem for me, but I find

myself absolutely exhausted by 3pm, and Thursday & Friday are nearly impossible

for me to navigate.

Can anyone help me figure out how to get to feeling better quickly?

Thank you,

-p

August 9, 2011

Phoebe: I'm like Harv and have taken numerous meds. I have had stomach/bowel

reactions to almost everything oral. I'm on remicade now and its working pretty

well for ReA, crohn's, etc.. If I overdo (too much walking or lifting, etc.) I

have a lot of pain, but otherwise on a regular day its bearable. I don't take

any pain meds during the day, but take amitriptyline at night to help me sleep

(kind of covers up the pain). Hope that helps. You can go into remission with

these diseases, I have not been that lucky, but have had times when the symptoms

are significantly less. Hope you can figure out the right meds for you.

Prayers going up for you.

Kathy from WI

HELP!

I am newly re-diagnosed with Reactive Arthritis. I guess I've had it since

adolescence but had been under the impression that it went away. I realize now

that is a bunch of phooey and that indeed I have been suffering the symptoms all

along only attributing them to other issues.

Here is my problem. I am in horrible pain. My hips, and feet are currently

effected. I'm on steriods, methotrexate, and folic acid. To no avail. It's not

getting any better. I'm so frustrated. Can anyone give me any ideas. My

rheumatologist is supposed to be one of the leading specialists of the field but

it has been 3 weeks since I saw him without much improvement. In fact, It might

be worse. This is interrupting my sleep. I've been prescribed every kind of pain

killer and frankly- it doesn't work.

I have been missing lots of work too. This is a problem for me, but I find

myself absolutely exhausted by 3pm, and Thursday & Friday are nearly impossible

for me to navigate.

Can anyone help me figure out how to get to feeling better quickly?

Thank you,

-p

August 10, 2011

And what really baffles me is how disparate the symptoms are each day. For

example, yesterday I woke up fairly mobile. Relatively low pain and my gait was

minimally affected. This morning however, not the same. I woke up extremely

stiff and was thankful that I put my ego aside and went ahead and got the cane

because it was useful in getting to the shower. Pain significantly higher this

morning, but as I think I have mentioned before- I'm unable to take a

significant amount of pain medication as I have to work. I go back to the

specialist next week. I have a bad feeling this is not going to get better any

time soon. And that in and of itself exhausts me. Usually I work 12 hours on

Wednesdays and I could really use the make up for all of the hours I have

missed, but I am too tired to even begin to think about staying additional hours

today.Â

Have a good day my new friends. Thank you for your kind words of support. I

really appreciate it. There is some comfort knowing that I am not the only one

facing this battle.

Happy Hump Day,

Phoebe, Aberdeen, WA

________________________________

From: " KABRHB@... " <KABRHB@...>

Sent: Tuesday, August 9, 2011 7:43 PM