Tell us about yourselves...

[steve201]

thought this would be a good way to get to know you guys...so..tell us about yourselves..how and when did you get SD...maybe a bit bout your life.....here's mine...

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this is my story, Like anyone really wants to know...but here I am......
my story..wow...it's kinda crazy....first off...I've always worked my butt off in one form or another...I was raised a Navy Brat from alcoholic parents...life was good while dad was at sea...but tough....Mom would work odd jobs as a waitress or something....and dad would be at sea for 6-8 mos at a time...when they got back together it was party time....
well.this went on most of my life....when I turned 18, I signed up for the AF...now I know your thinking wow..a navy brat joining the AF...well..I did it to pi$$ my dad off...it worked.....he swore that I'd finally lost my mind...

well..after 6 yrs in the AF..I decided it was time to get out since the Vietnam war was ending and it looked like I was gonna get tossed out anyway from force reductions...After a couple of aweful jobs..I decided that college was in store for me...

i got out of college and decided it was time to get a job......so I went to work in the Civil engineering field...hated it...It was neat though in away, getting to design highways and parking lots...but I couldn't see myself doing this the rest of my life...
so..I started applying for jobs at the local Navy shipyard...hmmm....go figure..I'm a navy brat..I know ships and boats...so..what better way to start a career....


I got hired on at Mare Island Navshpyd in the Nuclear reactor plant testing section....that lasted about a yr and I decided that being a clerk wasn't for me...so I transfered to the Electrical systems integration group...Basically integrating every electrical system that goes into a nuclear submarine...
well..it was fun..I was doing things the average person couldn't do...or knew about....after about a yr and a half I got recruited into a group called Ocean Engineering....we were working on a spook boat..one that is designed to spy on the soviet union....

At this time things were getting tense for me...I was working on cars and building engines for people while working 12 hr days at the shpyd..and trying to work a marriage...well...the marriage crashed....got divorced and my stress level started going up....this is back in the 80's....

well...after a few yrs of working in other shipyards and getting remarried...I finally came to the conclusion that I wanted to do something that has always been on my mind..and marsha told me I needed a hobby...well...TADA!!..big idea...I've always wanted to be a photographer...and marsha was supporting that effort...so..after alot of schools and training..I started working as a professional photographer doing weddings and portraites....well..the stress was building and building....
on top of that I'd changed jobs and was now working at Boeing Commercial aircraft co. on the 747...later to change to Customer engineering where I worked on all models...here you are with a customer and you only have one chance to get the photos that they are expecting AND they expect perfection....let me tell you ...people can get ugly with a bad photo...

well..about 2000...I'm shooting 14-16 weddings a summer...I'm doing family portraits like their going out of style and Boeing...the company I'd been working at for the past 5 yrs ...and in the Engineers union..decided that they needed to strike...it was a successful strike but for some reason...I was thinking in my 2 little braincells in my kanogin, my career was over..I was going against the company ...mainly committing mutiny !!(remember I was raised a navy brat??)....well...deep inside my head ..I had a couple of braincells fighting about going on strike...it was the right thing to do but the other one was saying ...nope dope..your committing mutiny!!...I became so stressed out that I imagined living in a box under the bridge someplace...loosing everything I'd worked for...home..wife...
car...everything...

so..the strike ended...I went back to work....and we felt we needed to do something to relieve stress.....so...we bought a boat!!...yep..no stress here!!!....Now I'd been around boats and ships all my life growing up..but not driving them!!!...I never even got to drive a submarine on seatrials..!!!...
so...our first outing was white knuckled....I went out ..tried to dock and crashed off the docks....it was ugly!! ....well...when we got back to our marina...my legs felt heavy...I couldn't breath...my hands blew up like mickey mouse hands....I couldn't walk up the ramp !!!...so...marsha had to empty the boat out for me....we got the boat put away and I was in really bad shape....we went the next day to the walk in clinic and the doc was suspect of an autoimmune disease....I just couldn't understand what he was talking about...
I got with our PC and he was an idiot...total doofus....he'd order a blood test and couldn't read the results..this went on for 8 weeks..finally we went into see him and told him that he obviously didn't know what was wrong with me...marsha was a mess...she got upset and told him that he either refer us to a specialist or we were going over his head and get him fired...well..the explosion could be heard all over the clinic....(note..he's not my pc anymore)....
well...a week later I went in to see my Rhummy...Dr. Sean Slack in everett.....he did some initial tests like the drop of silica on my finger nails.....look at skin....pinch test.......blood..pft....echocardiogram...fine cut ct....bone density....broncoscopy....you name it...I had it done...then after all the tests....he says..I think you have SD...you need to go see Dr. Furst in Seattle....well....he confirmed Dr. Slacks diagnosis and sent me out to get the drugs of choise...
what I didn't know at the time was that Dr. Furst called me one of the walking dead..he didn't give me 6 mos to live...(really glad he didn't tell me that)....
well....6 mos later I go back to see him and I'm not doing well...he's got me on cytoxan/prednisone/diltiazem...and god only knows what else I was on.....I changed PC docs to a guy down in seattle and he believed in mind and body treatment...he prescribed me to see a shrink...for the next 4 yrs I was seeing this psychologist for my emotional health as well as all the other doc's and therapists for the body...i went to deep tissue massage...the kind that when they feel an organ...they go a bit deeper...
physical therapist for strength.....

well..after 10 yrs now of strength training...deep tissue massage...and tons of drugs....I'm still vertical...I'm doing fine except for my right hand that is driving me nuts with renauds.....when it gets cold or I get stressed...my hand flairs up....my lungs have slightly improved from 28% loss to 20% loss....that's a heck of an improvement!!!...

we've graduated to a bigger boat...i can dock it pretty well now....I try not to stress to badly except when I go to the dentist and he shows me the needle he's about to stick me with......and life is really really good...I'm still at work at Boeing on a new airplane project...and did I say I'm still vertical??!!!.....

that;s my story and I'm sticking with it...

steve ;D

[steve201]

anyone else???....come on....tell us about yourselves some...


Steve

[kerry23]

Hi,
My name is Kerry, I am from upstate NY, I found Jeff somewhere on a website who brought me here. I want to thank all the warm welcomes back in October but I could not respond to any of them due to problems registering on here.
I am 51, female, married, 4 children (grown), the youngest and only son, 22, is here living with me and going through similiar symptoms for at least 3 years.

It's been over 4 years, maybe more, since I have had joint pain and aches. Neary 50 years old, I just blamed it on my age. There were some strange symptoms though so I went to Primary who have me standard blood work with anemia and high ANA. Back in 2008, I went to see a Dr. B. in Middletown, NY who tested me for everything (at least I thought). At this point, I was a bit excited about finding out answers to all these symptoms and pain. Well, all these tests came back negative of pointing to RA. So, I received a letter with 2 statements: You have Rheumatoid Symptoms and Make a follow up appointment. I am thinking, another appointment? Is he kidding? For what? RA symptoms? No way. I am done with him.
Two years go by, I am worsening, the pain is increasing, GI symptoms, stiff neck, my feet hurt, the fatigue alone was killing me. I sleep 10 hours every night and need more during the day.
My eyes are dry. Too many symptoms to list. I decided to seek another Rheumy at same facility in May of 2010. I liked her but had a bad feeling about her, couldn't put my finger on it. She runs more blood work and I ASK HER to run a Lyme test. I don't even know why I asked for that but I did know my son had it 2 years ago and was treated with standard 3 weeks of Doxy and he seemed okay for awhile. Now, along with me, he is showing similiar symptoms.
I called 3 weeks later for test results, 3 weeks with no answers, no calls, no letter, so I decided to call them, no return phone call, I waited another week, I call again, no phone call. I phone again after a couple of days, screaming, finally the doc calls me 24 hours later. I can tell she is reading the results over the phone. She never even looked at them prior to phone call. The doc is talking so fast that I had to tell her to slow down, I don't understand. All I could understand was the word, CREST. I figured she didn't sound to worried about it, so I wasn't. I would research it later that day. When I asked, "Should I come see you again", her answer was, "If you want". Again, I am assuming, okay, it's no big deal until I sat myself down on the computer and started looking up CREST. Then I went crazy. Scleroderma! That is what she said, Oh my God, I am going to die. I sent the info to my husband who came to me and hugged me. His response was, "this is serious, Kerry". I cried all night. I do not have it on my skin, just a small red spot on face. Next day made another appointment with her. Another two weeks to get in there, waiting 2 hours, only to get more bad news and to see that she never finished reading the blood report thoroughly. Now she claims I have overlaps of Lupus and RA, with the comment of, "Oh, this is not good". Great, now what do I do. She wanted to start me on some treatment with steriods, I refused. I wanted to do more research on this first. Last thing I asked her was about the Lyme test: she said it was negative. I was done with her too especially when she recommended me to see some specialist in NYC. The way she said it showed me that she had no idea how to treat me, she did not seem to be knowledgable with this disorder.
Second opinion: Limited Scleroderma with overlap of Fibromyalgia
Third opinion from Sclero specialist: bad feeling again: after mailing through all medical records, he never read them either. Even when I was present, he barely read anything. His comment: "You should not be in this much pain" "You might have cancer of the lung". All I asked was to start me on AP treatment. He refused, doesn't believe in it. Okay, I am done with him too. One good thing came out of that appointment was he told me of a doctor that would do AP. Dr. S. B. in Rhinebeck, NY. In October, I got in to see him. That office sent me all this paperwork of symptoms that I had to list and bring all my documentation in with me at time of visit. I figured, another one who will not even look at my medical records. I was wrong. Dr. B. sat with me for 45 minutes going through each piece of documentation with an occasional question. One important question he asked was, " Do you know your lyme screen was a high reading of 3.76 and a reactive band #41?" Yes, I knew that, but other doc said it was negative. Then I was off to his lab and 13 vials later was sent upstairs to get a taste of this machine called "Odamed", unbelievable technology. It told the nurse my weak areas and it hit it right on the head. Then it treats some of those areas. I actually felt better the next day. It is not a permanant treatment but something you can do weekly at $150 (no insurance coverage for that). In fact, this doctor does no accept insurance either. He did some fatigue test, normal range is between 7 and 9, I was 4.7 (exhausted), No body fat, down to 99lbs. I remember thinking in there, I really am dying. He never really talked about SD or anything, just ran tests and sent me home with three more, urine, stool, and saliva going to different labs, one being IGENEX which I know was for Lyme tests.
The urine test is a five day test with the use of 3 antibiotics, zithro, doxy, and flagyl. On days 2,4, and 6, you test the urine and send it through to see if you excrete lyme antibodies. Day one and two, I felt pretty good on these meds, but the remainder of days I felt like I had the flu. Someone told me I was herxing and I had no idea what that was. I call the doc's office and they immediately put me on minocin for lyme. Second visit was confirmation of Lyme (5 reactive bands) with co infection of Bartonella. Increased the minocin and added Levaquin for Bartonella. Herxing for 2 weeks but I think it is finally passing. That is where I am today.
My son went there too, with the same testing done, he vomited 2 days on the urine test. The doc put him on Minocin too. We are still awaiting his co infection result along with Lyme result.
My whole point here is the Western Blot is not sensitive enough to accurately diagnose any patient. The results are false, even when you come up with one band positive and screening high: you are negative. Last Western Blot my son had was completely negative, the one before that had one band reactive, and the one before that mentioned a co infection Babeosis, which was totally disregarded.
Why? It's the AMA. You have to have at least 3 bands reactive to be positive. Meanwhile, all of us are just getting sicker and coming up with all these life threatening auto immune disorders.
Anyone ever watch the documentary, "Under our Skin", it is very informative and I recommend everyone watch it. It is hard to find but parts of it are on Youtube.com. It might save your life. Go on any lyme site like lymenet.org and it will tell you symptoms, there are hundreds: it is unbelievable!
This doctor saved me, and anyone on AP for Sclero or RA or any auto immune at least will kill the lyme but NOT the co infection. When I spoke to Jeff, I told him I am trying "to kill two birds with one stone". I am so happy for him that he is in remission!
I don't understand these doctors not believing it, I begged the one doc just to let me TRY it and he flat out refused. Jeff is living proof along with others I have talked to that it works.
Lyme is everywhere and not just on a tick, watch your animals, fleas can carry lyme as well. I am sorry, I don't mean to be on an SD site and lecture on lyme, but you never know.....I am still trying to figure out how long I have had this and which came first the lyme or the SD, sure sounds like the lyme has created these disorders or at least mimic them.
Living in the Northeast, you would think the first thing the physicians would rule out is Lyme as soon as you mention joint pains but that seems to be the last on the list. I never realized that I actually went to a Lyme Literate Doctor. I just wanted to seek a doc that would put me on AP for Scleroderma.
That's my story for now...I will keep you posted and thanks Jeff for leading me here. I hope some can support me and I can help others.
Keep the faith and keep fighting, don't give up!
Kerry

Attachments:

[Cubby]

My story is under the AP section of this board. I posted it over on Inspire, In June, 2009.

Anyway, I am doing great. Still doing the AP. I take 1 a day, 100 mg of Minocin. I still do the Photopheresis treatments and now down to 3 times a year instead of once every 3 weeks. am shooting for only twice a year next year!

I have much to be thankful for.

[steve201]

Welcome to the zoo Kerry...glad jeff could steer you to our happy little corner of the internet....


Steve

[Cubby]

Kerry, Welcome!!! U will love our little gang here!!!! We've had highs, lows, excellent recoveries, a few sad situations, but we are all friends and feel free to ask anyone anything. when necessary, many are willing to talk on the phone, meet in person, e-mail, whatever.

We even have photos of ourselves under the Photos section. No laughing...I sure hope I look better in person than in photos. I have met some of the members in person, so they will probably tell u I am ugly in person (Steve--don't u dare!)

[steve201]

Steve

[vonni]

Looking back over the past year and a half, it’s hard to believe I’ve come this far and that my life has pretty much returned to normal. My journey with systemic scleroderma began in May 2009, as I was a getting into the hot tub with my husband and noticed tingling in my palms. As a nurse, I simply attributed this to tendinitis as I had been bicycling with my grandson a few days earlier and thought I overdid it. A few days later, more symptoms developed with left lower extremity tingling. My symptoms rapidly progressed to include difficulty swallowing, shortness of breath, massive hand and lower extremity swelling with discoloration of skin, tachycardia, quadriceps weakness, burning sensation of the skin and fatigue. My calves were so tight from swelling that I felt they would burst. I would cry for no reason. Some mornings I would wake up terrified, as it felt like I had a rope around my neck that was choking me, due to the swelling and fibrosis. In order to escape the living hell I found myself in each day, I would remain in a recliner, sleeping, and have absolutely no idea how I maintained the business I own.

I went to my family practitioner who referred me to an internal medicine specialist and infectious disease specialist, none of whom could find a diagnosis. I am seronegative, so the testing for autoimmune disease was negative, although my clinical presentation was not. I was seen by a neurologist, who suspected an autoimmune disorder. I went to an orthopedic hand specialist who gave me cortisone injections in the wrists, thinking I had carpal tunnel. I was then examined by a dermatologist, who indicated I had crest syndrome. My skin began rapidly fibrosing at that point, affecting my hands, forearms, neck, right lower face, lower legs and thighs, which were rock hard. My skin was sensitive and painful to air. The fibrosis was also spreading around my abdomen, chest, and into my upper arms. I had a tingling sensation in the occipital skull. I learned later on that this tingling occurs when the disease is active. I began developing severe itching and over the next several months, my hair began thinning. I remember seeing hair on the floor in the bathroom, literally in clumps. I lost about 40 percent of my hair before it was all over. I am happy to report that it has all grown back.

In September 2009, my husband and I were scheduled to go on a vacation to Napa Valley, which I did not wish to cancel as we had planned for it over a year. To say the least, travelling was difficult and much of the time in Napa Valley was spent looking out over the patio from our room, wondering if this was the last time I would ever see that beautiful site again. Needless to say, I was emotionally distraught at my diagnosis and literally in a state of panic. In the morning, I would wake up with massively swollen discolored legs, which I elevated on pillows, trying to reduce the swelling before going out to see the sites for the day.

I have always been considered to be a very determined strong-willed individual and decided that I needed to learn everything I could about systemic scleroderma. So, I began intensively researching information on the internet. The more I read, the more depressed I became, as there is no cure for scleroderma and the immunosuppressant therapy for me was not the answer.

I recall it was in September 2009 when I stumbled upon the Road Back website. When I first began reading the information and testimonials, it was astounding to learn that so many individuals have been helped with a simple antibiotic to treat such a devastating illness. Fortunately, I was able to obtain the name of an AP physician and my state and scheduled an appointment or the end of November. I purchased the two books recommended were written by Henry Scammell. When they arrived in the mail, I returned them a day later to Barnes & Noble, as I simply could not believe or accept that my physicians would not have recommended this treatment if it truly worked. After reading additional information on the Road Back and praying to God to help me find the answer, I called Barnes & Noble the next morning and asked them to please hold the books I had returned the previous day. I then repurchased the books and as my husband and I were driving to a scleroderma center in Chicago, read them both from cover to cover out loud to my husband. By then, there was absolutely no doubt in my mind and my decision was made. The appointment at the scleroderma center in Chicago was merely to hear the physician's recommendations for treatment; because I was convinced AP would work.

The physician at the scleroderma center offered more of the same--immunosuppressant therapy and symptomatic treatment options. After a nearly 2 hour appointment the physician decided that she was going to prescribe Cellcept, which I promptly declined. I indicated I was pursuing antibiotic protocol and had already scheduled an appointment with a specialist. I was seen by an AP physician in November 2009 and started on IV Clindamycin for 5 days, then began Minocycline 100mg twice daily. Within 2 days of starting the IV Clindamycin, I began having a herxheimer reaction, much like a mild flu with pin pricks under the skin on my forearms. Upon driving home with my husband, I noticed I was less short of breath and that the swelling on my legs had already begun to decrease. This was my miracle, the miracle of antibiotic therapy.

Over the next three months, things began to improve even more. I no longer had heartburn, shortness of breath or tachycardia. The scleroderma had also affected my intestines before I could begin AP. It took several more months, but this also resolved. The joint pain resolved at the 3 month mark, but I do have migratory joint pain on occasion to this day. I returned for a routine follow up appointment to my family physician after I had been on AP for 4 months. He was astonished and admitted to me that the last time he saw me he thought I was “going to die.” I explained the antibiotic protocol and he was amazed.

In May 2010, I pursued repeat testing for Lyme disease, after reading additionally on the Road Back that it seems to occur frequently in those of us who have other autoimmune disorders. Although the initial testing the year before at a different clinic was negative, my test through IGenex was positive this time. I initiated treatment with an LLMD, who prescribed another antibiotic, antiparasitic medication, vitamins, and some supplements. Prior to AP, I had cardiac and lung testing, which were abnormal. In October 2010, I requested repeat testing for cardiac and lung function, and both had returned to normal.

Today, I am truly blessed, having regained everything I thought I had lost with scleroderma. Those dark days are finally behind me. In going forward, I wish to give back to others who are where I was before the Road Back helped me regain my life and my health. So, when asked to write my testimonial, I readily agreed, with the hope that my words might help someone else begin their journey and join me on this road to wellness.

My husband and I returned to Napa Valley again last fall, but this time was much different. Everything was more vibrant, the scent of rosemary, the sound of hummingbirds, and the very majesty of life itself.

[steve201]

Vonni
Congrats from one walking dead to the other!!!.....it truly is amazing the turn around you have made...

Thanks for posting and Thank god you beat it.......

Life's short...enjoy the ride!!!


Steve

[vonni]

Steve,
Thanks--I'm glad you beat this monster too!

[jeffn]

Thanks for posting Vonni. Glad you "made it"