I'm new to this forum but have battled lyme and it's problems for a while. Here is a copy of an newspaper article written about us: Current weather for Wickenburg, AZ.
Family battles Lyme
By Patti Jares, Staff Writer
The Almstedt family has suffered financial hardships due to their struggle with Lyme disease. If anyone would like to help in any way, you can contact the family directly at (928) 684-2271, or you can email them at [email protected].
Dirk and Sonja Almstedt were a self-sufficient and industrious couple. When they moved to Wickenburg seven years ago, Dirk built a small but successful auto detailing business, Sunnyside Professional Auto Detailing, and the couple started a family. But recently Lyme disease brought their lives to a virtual standstill. The disturbing fact that Dirk, Sonja and their 6-year old daughter all have confirmed cases of the disease is raising more questions than answers among the medical community. The situation has turned their lives into a virtual nightmare.
Fourteen years ago Dirk was bitten by a mouse, that he believed carried Lyme disease, in Germany, and shortly afterwards, Sonja was bitten by a tick. The couple began showing signs of Lyme disease several years ago but the symptoms went undiagnosed until last June, when Sonja became so ill they sought medical attention.
``Her pain started on June 22,'' confirmed Dirk. ``Life went to hell after that - it's destroyed her completely.
The first two nights her pain was so severe she was taken by ambulance to the hospital, and the third day she was admitted to Barrows Neurological Institute, where she was diagnosed with Multiple Sclerosis. When treatments did not help, Dirk began to research her symptoms on the Internet. What he found was alarming: she had symptoms of chronic Lyme disease.
According to the Center for Disease Control (CDC), Lyme disease is now the ``fastest rising vector-borne disease in the United States,'' with reported cases 150 percent higher in 2005 then in 1991. The increasing incidents of Lyme disease in Arizona is reflected in the rising meeting attendance and Web site participation for the Arizona Lyme Disease Association's support group.''
The CDC goes on to explain that further complicating the situation is the fact that ``the disease can go undiagnosed, with symptoms often confused with a host of other illnesses. This happens because the bacteria that causes Lyme disease reacts with each individuals unique DNA, resulting in no two infected persons having exactly the same set of symptoms.''
Although the disease is prevalent in the mid-west, the Eastern United States, and along the western coast, Lyme infected ticks have been documented in every state in the U.S.
Unfortunately, the CDC has such narrow guidelines in affect to diagnose Lyme disease that it is commonly misdiagnosed - especially chronic Lyme. In the book ``Everything you need to know about Lyme Disease and other Tick-Borne Disorders,'' Karen Vanderhoof-Forschner explains how in 1990, the CDC established a uniform definition intended for reporting purposes only, but many physicians have misused it for a diagnostic tool.
Only a small number of doctors are considered experts on the subject; the CDC sites one reason being that most medical professionals have little or no experience recognizing and treating Lyme disease. Another reason is the perplexity of the bacteria itself. The bacteria causing Lyme, ``borrelia, is considered a ``smart'' bacteria - almost impossible to grow in a laboratory, and can actually change forms. It is also extremely slow-growing.
Easily misdiagnosed because of its ability to mimics other diseases, it is almost impossible to tell the difference between chronic Lyme disease and Multiple Sclerosis. There is no test currently available to make the determination and only doctors who are experts in the disease could tell the difference.
Dirk and Sonja have spent the last several months attempting to convince doctors that Sonja has Lyme. One who has listened is Dr. Richard Melde, who has a practice in Wickenburg.
``Sonja fits the symptoms to a tee,'' said Melde ``On top of that she had a positive test. Unfortunately, the FDA does not recognize the test used to determine Lyme, calling it experimental. Because of this, insurance companies will not even cover the $250 test.
``I don't think the complexity of the disease is well understood,'' admitted Dr. Melde. ``Conventional medicine would say you have to have a tick bite, rash or other symptoms.'' Lyme disease was first discovered in the United States in 1970, and later named after the town that had an outbreak among children in 1975: Lyme, Conn.
The disease is commonly caused by the bite of a deer tick, and can cause a ``bulls-eye'' rash, but according to Dr. Scott Taylor, DVM, a doctor who has Lyme himself, the disease can be transmitted by other species of ticks and less than fifty-percent of patients with Lyme disease will have the rash. Scott goes on to say that most physicians don't know how to recognize and treat cases of Lyme disease, especially the misleading cases of chronic Lyme disease, calling the situation a ``plague of ignorance.''``
Sonja is currently suffering from severe ``cluster headaches'' and body pain.
``We're not managing right now,'' admitted Dirk emotionally, explaining that by caring for the two youngest children during the day (Nicklas -4 and Cailin 13-mos.) he has little time to spend on his auto detailing business, And the disease is wearing on him as well.'' But I am thankful for friends, and Jeff Hull, the pastor of the church next door (Faith Baptist) who have helped watch the children. I don't know what we would have done without them.''
Their 6-year old daughter, who's Lyme was confirmed when tested along with her father (the tests for both showed levels of the disease the second highest possible.) will need treatment, but according to Dr. Melde, treatment is another piece of Lyme's perplexing puzzle. If the disease is not diagnosed and treated immediately, the conventional two-week treatment of antibiotics is not affective, and long-term treatment is essential.
``The treatment is to go on long-term antibiotics - for six months to a year-and-a-half. It's pretty hard on the body, not the same as chemotherapy but not very healthy,'' said Melde.
Because of the unorthodox treatment, doctors are criticized and even censored for treating Lyme diseased patients.
``Some doctors have discontinued treating Lyme disease because of harassment, and some have even had their licenses removed,'' stated Melde.
``I've always worked hard, usually seven days a week,'' acknowledged Dirk - we've always made our own living, but now we're running out of money. I am making a third of what I used to make, and doctors are asking quite some money - $500 for the initial visit and $300 after.''
Melde is committed to helping the young couple.
``I knew very little about Lyme until I met the Almstedts,'' said Melde. ``They came and asked me for help and I told them I'd do anything I could - they have done an amazing amount of research - they're pretty bright people and their life has been miserably affected by this illness - there's no doubt about it.''
I hope, I didn't use up all of your attention,
Sonja
Posts: 35 | From Arizona | Registered: Dec 2006
| IP: Logged |
posted
I have been reading posts here for 8 months.Your situation,is the same as mine.
Posts: 15 | From New Castle,Pa. | Registered: Dec 2006
| IP: Logged |
I feel for you, believe me. We hit the wall pretty good and our situation sucks. I have horrible pain attacks and my husband takes care of EVERYTHING, that makes me feel pretty depressed. I don't know how to enjoy my own kids anymore, I get so irritated.
All I can say is, don't give up, it will get better!!
Sonja
Posts: 35 | From Arizona | Registered: Dec 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well howdy-ho new comers!
Welcome to LymeNet!
WONDERFUL article.. just so sad it's true and happened to YOU!
I would stay and play.. ya know.. however.. I've got problems!
My Uncle used to love me but she died... and..
A chicken ain't a chicken till it's lickin' good and fried.
Back later to chat.. but wanted you both to know you are no longer alone.
NOPE!
You are with the best nut cases in the whole USA! (Especially Lymetutu.. but don't tell her I said that.. ok?)
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Sonja,
Welcome to the board and yes, sadly toooo many of us can relate to your story, sadly. I also relate to your frustration of having your husband doing everything. They get so busy doing your work, you never see em.
I'm quite impressed that you got the article in your newspaper. How were you able to get them to pick up your story?
Stick around and keep us posted on your progress.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
posted
Sonja -- sorry to hear about all your struggles. It's hard. The only good news is that you got a good article written, which helps alert the public about what's going on. We need all the publicity we can get/make.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Sorry you and your family have been infected with this disease. Just know that you are not alone.
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Welcome to the board. So sorry to hear of your problems. Wishing you a speedy recovery!
Posts: 1366 | From Southeast | Registered: Sep 2005
| IP: Logged |
bettyg
Unregistered
posted
hi sonja! so glad you copied/pasted your story here as well as i suggested; it was just too good of an article NOT to be read by others.
BUT for you lymies to go to her article and write a letter to the editor supporting the wonderful, detailed way her reporter wrote her story!
i dug out 1 of my latest articles, changed the newspaper writer's name, added sonja/family, and sent it off to her newspaper.
i'm sure others of you who have written since the recent lyme protest in NYC have some letters laying around that you could change a few words, and send it to their CONTACT US section by email!
IP: Logged |
posted
Sonja, Please give us an update on you and your family..how are you all doing ...has the treatment been helpful?
I hope you had an outpouring of support based on this great article-it is so hard to ask for help but your courage benefits many who need to wake up to the devastation of lyme.
Tell us about the docs in AZ, have you had to travel for care or are they trying to get up to speed to help you?
Hang in there, many here have felt the same horrible effects of this disease and I try to remind myself that what doesn't kill me will make me stronger...
Now you are in the lyme battle too-welcome warriors!
Blessings, Kim
-------------------- We are spiritual beings on a human journey...
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[loco]](graemlins/loco.gif)
.
![[Big Grin]](biggrin.gif)
![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic