Phil and all

[Guest guest]

Hi,

I just received this. This is the article that Beth Bruno put together,

which will be out this weekend. I need the ICUS addy, I tried the addy I had

but I could not get in. I had saved it in my favorites, but still it won't

open. Is there a new addy? Please write to me privately since I am on daily

digest, I won't see it until later. Beth would like to include the ICUS site

and needs it today. I hope everyone is well, as well as can be that is. So

far I think my hives are in remission. I think it was from an on going UTI,

I was on antibiotics for over a month, and the hive just gradually went

away.. I am hoping that was the cause..

My addy kate444@... Thanks..

Hugs,

Kate

re: article about urticaria

> Hi Kate,

> I haven't forgotten about putting an article together about urticaria.

> Here's the text. Note that I didn't include a website address for ICUS,

> because the address that you and Phil sent to me is incorrect and I

> can't find it through any search engine I've tried. If you have an

> address that works, let me know. I've shortened the letters and tried

> to capture their essence. I also added some new links from the Web that

> give lots of information.

>

> Do you want me to include you web address and name (like it appears? -

> and Phils as it appears?

> Please get back to me sometime today, so I can send the article in for

> posting this weekend.

> Thanks,

> Beth Bruno

>

> Here's the article:

>

> INSIGHTS

> Beth Bruno

>

> HIVES: What Causes Them?

>

> My nephew has been through every medical test imaginable in search of a

> cause for severe, chronic hives that appear every spring, make him

> miserable until fall and disappear through the winter. The itching and

> swelling is so bad that he takes numerous medications for relief - just

> so he can sleep! So far, no cause has been found. The hives appeared in

> adulthood, " out of the blue, " with no apparent antecedent. His condition

> remains a mystery.

>

> About a month ago I received a letter, also " out of the blue, " from

> Kate Walton, a woman who suffers from a similar condition. She told me

> that it has a name - Chronic Urticaria (CU) - and that she belongs to a

> support group comprised of other people who suffer from CU. She asked me

> to write about it, hoping that media attention might lead to sharing of

> knowledge, more attention from the medical community and, eventually, to

> a cure for some, if not all, people who have the same or similar

> conditions.

>

> What follows is a summary of Kate's letter, letters from people who

> belong to the CU support group and sources of information about CU.

>

> Dear Beth,

>

> I am a 37 year old woman who has Chronic Urticaria (hives). I am

> currently on an E-mail support group of about 300 participants. CU has

> gone undiagnosed, left to treating the symptoms and being shuffled

> around from doctor to doctor. This is a real disease that afflicts real

> people. As for treating the symptoms -- antihistamines, steroids and

> antacids are some of the medications prescribed. Steroid usage can be

> quite dangerous.

> Many CU sufferers have taken steroids for years and are now sorry they

> did. They are experiencing bone loss, teeth loss, weight gain, mood

> swings and other symptoms.

> Antihistamines, the ones that actually work for hives, cause severe

> drowsiness, to the point of not functioning during the day. Many people

> with CU suffer from shock, where the blood pressure drops and the throat

> swells, causing difficulty breathing. Edema (swelling) is also a side

> effect of hives, as is the depression one goes through when coping with

> this disease.

> We do our own research and ask for specific tests that should be done,

> often without help from our doctors. Still, there are very few of us

> that actually find the cause. In my opinion and the opinion of the

> support group, medical professionals need to take on a more active role

> and more medical research needs to be done to find a cause. CU is far

> more than a few welts. It changes our quality of life drastically. We

> need to find medical professional who are willing to speak openly about

> this illness and help us do something about it.

> We need help from the media, not a debate. We need to tell our side of

> the story. If it were not for the families in Lyme, CT who told their

> story, Lyme disease would be another undiagnosed collection of

> mysterious symptoms.

>

> Sincerely,

> Kate Walton

> Kate444@...

>

> Dear Beth,

> Here is my story, or should I say nightmare?

> December 1999 I went to Tenerife on holiday. This is when it all

> started. My scalp became very hot and itchy, (no signs of hives). When

> I got back to the UK, hives appeared on my face, so I went straight to

> my GP who presribed Claritin (antihistamine) and Prednisolone (steroid).

> The hives cleared up straight away.

> Within a couple of days the hives were back, worse than ever, all over

> my body, even on my eyelids! My GP referred me to a dermatologist who

> told me I had CU. He prescribed more Prednisolone, Zirtec, Dimotane LA

> and Tagamet. After doing some research and finding this support group, I

> began to learn a lot more about this disease and took some of the

> information to the dermatologist to ask for tests. I mentioned the

> Zantac Zirtec combo. I was disgusted with his responce. He said that

> there are no blood tests to do and told me I was already taking Zantac

> -- it just had another name. This was a lie because I was not taking

> Zantac at all. He more or less shoved me out his room and shut the

> door. I felt so alone, worried, scared and depressed.

> The Prednisolone made me put on two-and-a-half stone. I had to buy all

> new elasticized clothes and began to hate myself, crying myself to sleep

> at night. The antihistamines made me so drowsy that I started to fall

> asleep at work every day. I couldn't concentrate or cope, so I decided

> to pay and go private. I paid £90 to see a consultant. He gladly

> arranged for me to have blood tests done. The RAST came up abnormal and

> so did another test for inflammation. Also my anti-histamines have been

> changed to Telfast 180 and Ranatidine (Zantac). I am now down to just

> 5mg per day of Prednisolone along with the antihistamines. I feel there

> may be hope yet to get off the steroids.

> The last 7 months have been the worst time of my life. I feel like part

> of me has died. I am no longer this bubbly outgoing 24-year-old. I have

> become depressed and tired, with no motivation. This group and my family

> have given me a lot of reasons to keep my chin up. There is so much

> support from this group. It really helps to write down what is going on

> and to read all of the messages from the group. I hope we find something

> to cure this disease. --- Dawn

>

> Dear Beth,

> One of the outcomes of a chronic condition such as urticria is the

> interference with lifestyle. For many, the condition is an irritant.

> The individual learns what triggers the symptoms and modifies her/his

> behavior accordingly. Activities such as hiking or running may be

> impossible, if they precipitate uncontrollable itching and hives for

> someone with cholinergic urticaria. Canoeing, rafting or swimming may

> be impossible for the individual with severe cold urticaria. For those

> whose symptoms are severe or life-threatening, the potential for

> accidentally finding themselves in situations that produce the urticaria

> can be a major source of fear and anxiety.

> Another issue affecting the life of a person with urticaria is the

> discovery that others do not understand (or have not heard of) the

> condition. Many health care providers are not familiar with, and do not

> screen for, the physical urticarias. In the larger picture of overall

> health care, these problems are often dismissed as minor annoyances

> without due consideration for diagnosis and treatment. However, worse

> than health care providers' lack of interest and knowledge may be the

> response of the individual's family, friends or acquaintances, who are

> likely to be much less aware of the condition than health care

> providers. The fact that the majority of urticaria sufferers are female

> produces interesting speculation regarding the possibility that

> urticarial symptoms may be dismissed more readily than if the symptoms

> were experienced by men.

> As is true of other conditions about which little is known, it can be

> difficult for health care providers to help a person whose symptoms do

> not fit into a recognizable framework. If there is not a familiar

> explanation or ready diagnosis, it is often too easy for a health care

> provider, as well as a lay person, to dismiss the symptoms and the

> impact they may have on someone's life.

>

> Dear Beth,

>

> I am the web master and founder of ICUS (International Chronic

> Urticaria Society).

> ICUS is more than a medical information site; it is a place for refuge.

> It is a society for service and support for all that need its help. No

> advertising is published via the site. We are there to help each other

> and are seeking new means of sharing information worldwide. Contact me

> for information. --- Phil

> Home phone:

> Office phone: extension: 3269

> Email: frankford@...

>

> Dear Beth,

> Here is my painful story of severe urticaria.

> In August of 1998 I developed a red itchy rash on my chest. Just a few

> months prior to this, I ended a tumultuous five-year relationship with a

> man who was verbally abusive. Additionally, my 17-year-old daughter

> began a two-year saga of lying and stealing that led to a prison

> sentence. I work for a large insurance company and, as a manager, I

> assumed increased job responsibilities. All this put me under

> considerable stress. Nevertheless, I was enjoying the single life and

> the status my job gave me, not realizing my life was about to change

dramatically.

> In November of that year, over Thanksgiving weekend, I went on a ski

> trip with a male partner. It turned out to be a very stressful weekend.

> The rash went from my chest to my whole body. I went to an Emergency

> Care clinic where I was given a steroid shot. The condition improved

> for a short time.

> In December it came back. I went to a dermatologist who treated me with

> more steroids). My symptoms persisted but were manageable. Later in

> December my rash worsened. I went to a dermatologist who put me on

> Atarax and Kenalog. Again, it worked for a little while. Then the

> emergency room visits started. In January, 1999 the itching became

> unbearable, and I went to the emergency room at a local hospital where I

> was given Solumedrol 125 IV push (more steroids). On 1/11/99 the

> dermatologist put me back on Prednisone daily for seven days and I was

> also given Kenalog - more and more steroids.

> In late January we tried PUVA (light treatments). It made me itch

> worse. During this time my work responsibilities increased. I was

> traveling a lot, and my daughter was getting into more trouble. My

> personal life was intense. From February through May of 1999 a

> combination of light treatments, topical lotions and Atarax were used.

> In June the rash came back with a vengeance. I was given Kenalog and

> Zyrtex daily with Clonazepman for sleep and Prednisone for five days.

> During the next four months the horrible itching was off and on. It

> never really presented itself in a full-blown rash or hives because my

> system was so suppressed from all the steroids. It was mostly a burning

> from the inside of my body out. Stress always exacerbated it.

> I was scheduled for a hysterectomy at the end of October. Approximately

> one week before, I was visiting my boyfriend in San Francisco and I had

> an " extreme " attack. I could feel my skin itch and burn just beneath

> the surface for approximately two days. We attended a concert the

> evening of October 21 and I became so uncomfortable I had to be taken to

> the Stanford emergency room. I was given Solumedrol and benydryl push.

> I was also given Prednisone to take daily until my surgery, which took

> place on October 27. The surgery went very well, however due to the

> high dose of Prednisone I was given while in California it was necessary

> to be give 125 mg. Solu-Medrol IV piggyback over 30 minutes post

> surgery. Does this give anyone a clue that I was being Prednisoned to

death?

> In December my condition worsened, the itching was horrible, I was

> trying to work, and the effects of all the steroids were really

> beginning to show. I couldn't sleep, my ability to concentrate was

> deteriorating and during all this I was trying to maintain a long

> distance relationship. The dermatologist put me back on Prednisone.

> I'll admit I was terrible about taking the Prednisone as prescribed. I'd

> feel some relief and the side effects of the Prednisone were horrible,

> so I quit taking it, sometimes in the middle of the dosepack. I was

> also on several antihistamines, and I would quit taking those because I

> could not function at work. I had an MRI scan and everything was fine.

> During this

> time my legs became intermittently inflamed and swollen. Blood work was

> ordered and nothing showed.

> In mid December I was sent to the top allergist in the state. He did

> some food allergy testing and nothing showed, because I was so

> suppressed from the steroids. I had been on Doxepin that the

> dermatologist had me try with very little success. The allergist

> prescribed Zyrtex and Zantac, and told me I was just stressed. I went

> to San Francisco to visit my boyfriend on January 25. While there, I

> had another severe attack. My skin was burning and itching

> uncontrollably. I went to the emergency room of El Camino hospital

> where I was given Prednisone again.

> In February, it was determined, with my insistence, that I be sent to

> the Mayo clinic. I was in terrible shape and again I was put on a

> Prednisone taper and Prozac. I could not sleep, had incredible

> headaches, was exhausted and the itching and burning was much, much

> worse. On February 21, 2000 I went to the Mayo Clinic where I was

> evaluated and tested by an allergist, dermatologist and a psychiatrist.

> The summations of my weeklong visit and many tests was basically I had

> been " over Prednisoned " , and I was sent back home.

> I was miserable. I turned to alternative medicine. I went to see an

> acupuncturist, network spinal chiropractic, a nutritionist and joined a

> healing group. I was sliding downhill fast. In April I had another

> horrible attack and ended up in the emergency ward again where I was

> given Prednisone again. Nothing worked; I felt my life slipping out of

> my hands.

> At the end of April I could do nothing except lie in bed and take

> sleeping pills to keep me out of my misery. I was doing colonics,

> trying every homeopathic remedy suggested. As a last resort, and what I

> truly think saved my life, my nutritionist sent me to CHIPSA hospital in

> Mexico. CHIPSA's main focus is terminal cancer, however they also take

> chronic disease. I hardly remember going down there I was so near the

> end of my life. I truly feel I was barely connected to the earth. I

> spent seven agonizing weeks at CHIPSA. God bless these people, as I

> truly believe they saved my life.

> Their program is intense detoxification through a variety of treatments.

> I can't begin to tell you how much courage it took to do this program.

> They said that detoxing from Prednisone was worse than detoxing from

> cocaine. The pain and trauma that I endured is more than I can even

> write about. However, the wonderful part is that I did detox from the

> Prednisone. I think this alone saved my life.

> As for the rest of the program, I'm not sure that it helped find the

> source or improved my original condition. However it has opened the

> doors to at least show that my eosinophil count is way up, so testing

> now shows what is happening in my body without all the Prednisone. In

> other words, my immune system is not so suppressed that nothing shows.

> Also while in Mexico I had all my mercury fillings replaced with

> amalgams. I was going to have a root canal taken out and two cavitations

> done, however those are now scheduled for September. I don't know if

> that will help. To say that I've been through so much that one more

> " procedure " really is daunting is an understatement.

> I'm currently taking Zyrtec and Zileuton during the day and Atarax and

> Trazodone at night. Believe me, I hate taking these drugs, but they are

> at least keeping the horrible attacks under control. When I say

> attacks, this is what happens. I start to itch in a certain area. If I

> start to scratch it spreads uncontrollably all over my body. I scratch

> until I bleed. I feel like a caged dog that keeps biting itself. My

> skin then hurts for days. Showers make me itch, as do heat, cold and

> any kind of anxiety.

> While this has been a horrific experience, it has also led me to some

> incredible insights about myself. I am truly learning what is important

> in life. In the past year I have spent over $65,000 dollars. This is

> my own money and does not include what my insurance has paid. I had to

> sell my house, and I've lost a relationship that was very dear to me.

> However, I am discovering who I really am and what I can offer to the

universe.

> I hope my story helps someone and I welcome any insights or help anyone

> can give me. It is so helpful to have support. ---

>

> Support Group for people with Chronic Urtacaria (CU):

> (then search under the word - urticaria)

>

> AllergyWeb information about Chronic Urticaria:

> http://www.allergyweb.com/articles/ChronicUrticaria-MD.html

>

> Urticaria: http://adam.excite.com/info/?id=000845

>

> More links about Urticaria:

> http://www.users.globalnet.co.uk/~aair/urticaria.htm

>