Author: 1to90

 
This is one of a series of guest blogs by people who have enrolled in MyLymeData.
By Ruben Lee Sims
I have had Lyme disease for 34 years and began treatment for the first time last month. I was active duty Air Force when I contracted Lyme disease in Southern California in 1982. I know exactly when, where, and how I was infected. 1982 was the same year Dr. Willie Burgdorfer identified the spirochete that causes Lyme.
The experts claimed that Lyme only existed in endemic areas of the northeastern United States. Although it was published as fact, there is no real scientific basis for this statement. It seems purely arbitrary and subjective. However, this false statement has caused California Lymies and Lymies outside so-called endemic areas enormous grief and suffering; because many doctors still believe you cannot get Lyme disease in California and other non-endemic areas.
As a military man, I was punished under the Uniform Code of Military Justice with two Article 15s and nearly court martialed twice, because doctors said no disease caused my many symptoms. I was committed to secure psychiatric wards three times as a hopeless hypochondriac. I was told I would stay on the psychiatric ward until I got better.
After congressional investigation, I was finally discharged from the Air Force after 14 years of highly recognized and awarded military service that ended in shame because doctors did not understand Lyme disease. I stood before a military hearing where attorneys laughed and joked as they decided I was no longer fit for duty and discharged me from the Air Force without benefits, pay, or health insurance. I was essentially dumped on the streets homeless, disabled, and unable to work, with a wife and a child to provide for.
Three decades after my discharge, the VA still cannot diagnose Lyme disease based upon symptoms. Therefore, I learned I had Lyme disease from a May 2015 Costco magazine article that encouraged me to review my medical records and study Lyme disease. That review taught me that the same rash that started three decades ago was the Acrodermatitis Chronica Atrophicans (ACA) rash that is caused by untreated Lyme disease.
Nonetheless, it took six months of constant confrontation with the VA to get them to bring in someone that understood Lyme disease. I am seronegative by ELISA and Western Blot. So, doctors’ over reliance on serology test nearly left me blind from severe sensitivity to light. However, in December 2015, the VA finally brought in a Lyme expert from the Hospital of Special Surgeries in New York. Unknown to me, the VA had already confirmed my ACA rash. The expert reviewed my documents and found the confirming skin biopsy in my records. Therefore, even though I was seronegative, the ACA rash confirmed my Lyme disease 34 years after my infection.
After less than a month of treatment, my photophobia is nearly gone and the ACA rash is gradually fading. I no longer take daily naps and I can sleep 7-8 hours several days a week. I no longer feel totally wasted and out of things every day. I am encouraged by treatment and look forward to setting my records straight and helping others.
It is important to know, the VA did not recognize Lyme disease until the mid-1990s. That means that veterans who had Lyme disease before then were misdiagnosed and some are perhaps homeless and disabled. However, our government is no wiser today than before they recognized Lyme disease. We are still being misdiagnosed and perhaps dying of other Lyme-related diseases. I cannot sit by and do nothing to change this.
I was a management/cost/ financial analyst for over 30 years. I know that data is a valuable resource. Thus, one of the ways I’m going to help bring about change is by participating in MyLymeData.
This important project gives Lyme patients a chance to make a real difference. By pooling our information, we can help build up the knowledge base of how real people experience Lyme disease. This will help direct researchers in a more useful direction. No one in the military—or anybody else in this country—should have to suffer so long without proper medical care.
Click here for more information about MyLymeData.
Ruben Lee Sims lives in Southern California.
Thank you for sharing your story. My son is active duty Air Force and although he does not have Lyme, his lovely wife does. There are glimmers of hope. His current flight surgeon believes in chronic Lyme, although his hands are tied by the military (read government) when it comes to treatment. Thank you for your service and I am heartbroken that you were so poorly treated by the military in a time of pain and need.
Thank you for your story!keeping awareness gets us closer to getting the word out!i have chronic LYME since 2001 and know where when to but Drs told me i was negative for the disease as well!treated me for MS!God Bless you keep fighting!
Complete denial of chronic Lyme baby every doctor I have been to. Painful and debilitated unless I can somehow get a hold of a couple of weeks worth of doxycycline. Symptoms go away 80% for a month or so. Plus heat pads…antiinflammatories, turmeric, and several pigs of Clarita. Which does seem to help.
My sister was diagnosed with Lyme via serology testing positive 3 years ago by a Missouri doctor who could only prescribe oral antibiotics not IV . After a year he gave up on her so she found another doctor who gave her IV antibiotics for 18 months but can now no long practice medicine and stopped all meds cold turkey. The joint pain and inflammation is totally diabilitating. Now she’s in limbo land. That is so wrong.
Thank you for your story, it provides hope for those of us, my 12 year old son that is still suffering. We also had a Positive ELISA with 2/10 Western Blot positive at HSS and were told ‘Negative’ ….and he didn’t get treatment until I had his blood sent to Igenix, which was PCR positive.
Thanks for telling us your story. It’s ironic that you were in the military and this was your biggest battle. Agree with you that there is no scientific basis for saying Lyme is only in endemic areas. I was bit by a known tick in Big Sur, CA in 1981. There have been plenty of people bitten even earlier than that in CA.
This is for you, Ruben – please look at this site – it’s a list of US military bases rated low/med/high for tick infection risk btwn 1983-1996. You will see that the Vandenberg base was rated high risk, for example. http://lymeblog.com/LDRA-USARMY83-96/lyme.htm
I can tell you’re going to be a good advocate!
ruben,
thank you for your heartfelt, tear-jerker story of how our military DOESN’T diagnose, treat, or recoginize lyme/vector-borne diseases.
thank you for all the years you spent serving us; then to be treated shamelessly, is unacceptable!
were you able to get SSDI early on?
will you be able to get BACK PAY for this “unrecoginized/UNDIAGNOSED” lyme disease diagnosis?
thank you for sharing your story; glad dorothy asked you to write your blog here!
i just wrote and submitted mine and my late husband, jack’s, lyme story of 82 yrs. of chronic lyme; too long. it will be out sometime in future.
hugs/prayers to you/family, and glad that treatment has helped your photosensitivity!
lights, glare, & reflection, noise, and chemical smells are the worst things i go thru daily.
bettyg, iowa activist
47 yrs. chronic lyme
35 yrs. MISDIAGNOSED by 40-50 drs.
UNACCEPTABLE!
Mr. Sims, I am deeply moved by your story. I wish you all the best in your recovery, and I thank you for fighting against the systemic neglect and mistreatment of Lyme patients.
Dear Ruben, Do all of us a big favor and sue the pants off of them. They deprived you and put your family at risk for so very long. Sue them. Any of us would help in your battle if you sue them. witnesses, whatever. I wish some young lawyers would get involved, and start helping Lyme patients sue.When you do serve, you should be treated well, and obviously!!! you were not. Unacceptable. Sue them, please. Even one case of successfully suing wold help all of us.
May God Bless all of those suffering from lymes disease. Read about US stating was a biological warfare agent. Plum Island New York
Ruben, your story took me back in time as I re-lived my past with nearly every word you wrote. I also contracted Lyme while active duty (US Army) during the 70’s. I remember suffering through a worse than flu illness/fever during basic training at Ft. Leonardwood, MO. Went on sick-call, then was promptly put to work sweeping, mopping and waxing floors in the officer’s work area; could barely stand up. I later developed Achilles tendon pains, then knee joint pain, constant dizziness, inability to stay awake during the day, unable to sleep at night. Went on sick-call again, no help of course. Was threatened with article 15 for sleeping past time to get a haircut, couldn’t stay awake. Had to sleep, hidden behind equipment racks while on duty to avoid article 15’s. It was horrible having to hide from military prosecution because of an unknown illness. 39 years later, I figured out it was Lyme disease, had a Western Blot to confirm. Working on my own methods of treatment now.
So, so very sorry!!!
I live in Louisiana. I was diagnosed in Dec 2015 with Lyme. I have had 7 knee surgeries and a bunch of other orthopedic and neurologic issues. I was started on Doxy and within a few months I am taking 5 different antibiotics.They have bedridden me. I live alone and cannot just lay in bed everyday. I was going down hill fast. I am 58 yrs. I cut all the antibiotics except doxy. Within days I felt so much better. I have researched Lyme since. They don’t want to recognize that Louisiana has alot of people here have Lyme. Louisiana is known that we have so many bugs here and yes there is alot of tics here. I just wanted to get it out that there is Lyme besides in the north.
We believe you! Montana is another state where people are thought not to get Lyme, but they very much do. More than one person in my family has contracted it there and one of them more than once.
I was a military wife, am a physician and my husband was also. I contracted Lyme in the Black Forest when we were stationed in Germany. It was so long ago (I think 1986) that nobody knew what it was. We were back in the US 8 months later, when my husband saw an illustration of the same rash I had had posted in the American Journal of Family practice. he called CDC and they said for me to take oral antibiotics for a month. I felt much better and assumed I was OK.. 3 years later, we were back in Germany and I began having weird problems..from polymyalgia rheumatica to open chancre-like sores on- my fingers. My husband died of a heart attack I returned home, and developed more odd symptoms: knee swelling, nephrotic syndrome, along with depression and fatigue and sleep disturbances. I lived in a remote area of Northern California, but a family friend and physician decided we would assume that these disorders were due to chronic Lyme, although I was seronegative.to Elisha and Western Blot. I had a pic line installed and for 6 weeks administered 2 grams of antibiotic (Rocephin) with a pump every night.. All symptoms subsided over time, but by them, my knees ere shot, so I had them replaced. The military insurance I had from my husband paid for everything without a problem in coverage or expense. I am now 81 years old,my 16-year-old knee replacements are doing fine, and I am healthy other than the usual problems that go with advanced age. I now live in Arizona with my son and family..I have been a supporter of Lyme Disease.org for many years. Keep up the fight and the good work you do.
Joyce C. Bradley, M.D.
Thank you for your service. You’ve not only served your country, but you have continued serve as an inspiration to your fellow patients living with invisible and misdiagnosed chronic illness. Like you, I wonder about the prevalence of LD among our homeless veterans. I’m so glad you persevered in your quest for answers. May you find lasting health after Lyme.
To all who still suffer or those who may discover they have Lyme disease, i highly recommend reading the book “Healing Lyme” by Stephen Harrod Buhner. The second edition was published in 2015. His knowledge of the subject and his Protocol for treating it is followed by MANY Lyme Aware Physicians so why not by we lay people? You can get a copy through Amazon.com
The Protocol in this book is what my doctor used to treat my knee, along with other procedures that I would describe as “outside the box” but I can walk with only a slight limp where before treatment I was on crutches and in much pain.
Oh yes, I submitted my information to the survey.
I have to say, it took some truly whopping doses of some of these herbals to move the needle, but for sure Artemesinin and Cryptolepis sanguinolenta caused Herx reactions and improvements in my case. My diagnosing naturopath and my expert LLMD both recommended a dropperful of Cryptolepis twice a day. I did that for a couple years and it did absolutely zero for me. So, I assumed it just didn’t work… until I accidentally took way too much one day and Herxed so badly I missed work the next day and so by accident I discovered that it actually does help at 3x the dose.
Thank you for sharing your experience in such a thoughtful way with remarkably measured rhetoric given your experience. Thank you too for your service to our country in the Air Force and again to the Lyme community and our country at large, including all those not yet infected, undiagnosed and diagnosed who will ultimately benefit from stories such as yours.
Reading your story reminds me of those Gulf War veterans who suffer with Gulf War Syndrome. So often, I have wondered if they had a borrelia infection as their symptoms were remarkably similar to my Lyme symptoms.
Wishing you continued hard won now good health,
Kari
May 2010 Bulls Eye Rash – told by family physician no Lyme in Indiana
May 2012 Late stage disseminated Lyme-Negative according to CDC standard tests
June 2015 Weaned off antibiotics after 3 years after treatment for Lyme and Bartonella.
Sir, I salute you as a fellow Air Force Security Police Veteran (7/69-11/75) who spent a year in Thailand (bitten by everything imaginable) and two years at Pease AFB NH (endemic) only to be told in 2010 at the Salt Lake VA hospital I couldn’t have Lyme or co-infection as I was living in Idaho.
Never mind the fact that at museums in SE Idaho have furs and pelts dating back to the 1800’s that still had (dead) ticks testing positive for Lyme. Never mind that I didn’t only live in Idaho.
VA doctors are ignorant out of choice and the VA does not want to unleash another “snow storm” of claims like what is currently happening with herbicides exposure.
Keep up the fight my friend.
Thank You so much for sharing your story, It takes courage.
When I contracted Lyme in Southern California 10 years ago, I had almost every symptom listed. I suffered greatly like so many, both physically and financially. After 10 doctors, several misdiagnoses and 3 years, I finally found info on the internet and gave it to my 10th doctor to read. He believed I had Lyme but didn’t want to write it down as a diagnosis.
Antibiotics only made me worse, and I finally used a sound wave treatment in Las Vegas called Medsonix for 16 months to get rid of most of my symptoms.
I never did get all my energy back and I have breathing problems that have never stopped, recently it has become severe.
Over the years I have convinced myself I don’t have Lyme, but thanks to your brave letter Rubin, I now can face the truth. I bet there are many of us who don’t want to admit we have Lyme, even when we do test positive, because so many doctors want to ignore it, and we just don’t want to admit we’re sick.
Maybe by sharing our experiences we really can make a difference. I sure hope so. Thank You Rubin Lee Sims!
Sheila L. Stewart
Dear Ruben,
Thank you for sharing and being a great spokesperson and advocate. I was also misdiagnosed in California, but for merely nine years, haha, and have done various treatments off and on for the last four years. I also have a cousin who had Gulf War Syndrome, and now I’m wondering about that diagnosis.
I am writing to encourage you to find an agent who could get you a nice contract with a movie producer. Lord knows Hollywood could use a good story, and yours is POWERFUL!
Good luck with your treatment, and with your outreach to veterans groups. (There is such a large homeless population here in the Bay Area…I wish we could test them all.)
Blessings to you and to your family who believed in you!
Emily
Dearest Ruben,
What a story! First and foremost, THANK YOU for your service and your commitment to the lyme community.
Ruben, I am asking for YOUR HELP if at all possible, perhaps by emailing me so we can discuss (chaendler@comcast.net). I have been diagnosed with late stage lyme by a lyme MD…in June 2015 I developed a skin condition/rash that I STILL HAVE 9 MONTHS later…multiple biopses and MD consults showed contact dermatitis. I was tested for that and came up with allergens. However, all the items I am allergic to, I have not used for many years.
Naturally, all my regular MDs think I am crazy when I ask about ACA as they do not even consider lyme…even my lyme MD thinks that may not be what is wrong with my skin as she states ACA only found in Europe.
COULD I HAVE ACA? How do I get it diagnosed…special biopsy?? Also, have had photophobia for many years, worsened since rash began June 2015 and getting worse.
The reason I am so DESPERATE is that this skin condition has prevented me from going outside!! I need not say more. It is a skin eruption that just burns and burns, ears ooze…I never know when it will flair. When it is bad all i can do is sit with Manuka honey and ice to try and reduce the burn.
I am trying my hardest to live this extremely restricted life but this skin thing has knocked me down so far i can no longer fight.
If you are able, please email me so I can understand ACA better and see if that is what i have. My sincere thanks in advance for your time and expertise. I, also, live in northern CA.
Here’s an article by an ID doc who found ACA in Georgia: https://www.lymedisease.org/lyme-disease-georgia-pugliese/
thanks so much! someone had sent that to me many months ago…brought to my MDs and they still do not believe! My MDs agree something is very wrong with me and they can clearly see the skin eruptions but they haven’t a clue as to what to do. I have tried about 10 steroid creams (i know, lyme and steroids) to no avail….those creams seem to make it worse!
I just do not know who to turn to for any help with the further workup of this. If this is contact dermatitis, it has to be the worst case EVER!
My friend committed suicide in 1991 after her disbelieving docs kept up their disbelief despite my friend’s continued downhill course (diagnosed back then with CFS as was I). I am at the stage my friend was many years ago…where do i turn for relief? Can not go to yet one more MDs consult and be further disheartened after the visit.
Recommend you be evaluated by a Lyme-literate MD, affiliated with ILADS.
I am seeing and have been seeing a LLMD who is just too unfamiliar with ANY LATE STAGE SKIN PROBLEMS!
You can get LLMD referrals at http://www.lymenet.org in the Seeking a Doctor section.
cindy, you can also go here for 24/7 answers.
hope this helps your relentless search; been there, done that for 35 yrs. before i was CORRECTLY diagnosed after seeing 40-50 drs!
https://sites.google.com/site/lymedoctors/home
bettyg, iowa lyme activist
Betty, so appreciate your recommendation – thanks, too for being an activist for those of us who can not currently.
Hi Cindy – seeing all these comments coming in, just read through what you wrote and that you’re in CA. I’m going to email you about doctors.
Cindy,
Morgellon’s disease is a relatively rare variation of Lyme disease with unusual skin manifestations which is not yet well recognized. Here’s a link to the best website about Morgellon’s disease, where you will find photos of the various skin rashes associated with it, plus tons of other information about treatment for it. It is often more difficult to treat than ordinary Lyme disease, but it is definitely treatable once it has been properly diagnosed.
http://www.thecehf.org/
cindy, perhaps this link of info may help you too about ACA….
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/3695166-acaskin-manifestations-of-lyme-disease
bettyg
I am so pleased your condition has been acknowledged by the VA. As a Lyme’s Disease survivor now in remission) and husband of a current chronic Lyme’s sufferer, I wish you luck in you recovery.
God bless you for sharing your story. I am very sorry for the years and years of feeling left behind. Again, it is heartbreaking hearing our Lyme family suffer not just the disease and co-infections but the LACK OF UNDERSTANDING AND HELP! I have late stage neuro lyme but continue to fight one day at a time. Antibiotics, picc line and now IV treatments. We must all stick together and YES RAISE OUR VOICES! My children and I wrote a little book to encourage families, that ALL is possible with Jesus! Check us out http://www.lymeonedayatatime.com. God bless you and THANK YOU FOR YOUR SERVICE!!
First of all, thank you for your service and I am very sorry you are going through Lyme hell too. I’ve had Lyme since July 2002. Was bitten in Livingston, Texas. Was misdiagnosed at the Liberty, Texas ER July 25, 2002, with a big bullseye, very severe flu like symptoms and 104 fever. Was misdiagnosed by maybe 7 Drs between 2002 & 2005 when finally got a Lyme positive diagnosis at the Houston medical center. Was treated from that point until 2010 with basically 5 years of antibiotics. Doxycycline (year at a time. 6 months at a time) picc line (intravenous) with 2 grams of rocephin a day for 6 weeks. Months on end of riphampin.
6 straight months of malaron (malaria antibiotics) paired with azythromycin & flagyl (flagyl twice a week all 6 months). That was the last time I took antibiotics. And I ALWAYS felt better for a little while and could walk and function again after antibiotics. But we all know we can’t live the rest of our lives on antibiotics.
I also tried every homeopathic “cure” out there. Colloidal silver for a year. Food grade hydrogen peroxide (drinking it in water) for a year. I’m not typing anymore….point is, if it could be cured, I would be well. It’s been 14 years and I have been bedridden, except to get to the bathroom with a walker most of the time, for 3 1/2 straight weeks right now. It’s incurable. ?
Good luck to you sir. I hope you find a way to get well. And please share with us all if you do.
God bless you and your family and again, thank you for your service. (My brother retired Air Force)
Diana,
Hello, fellow Texan. As co-moderator of our TxLyme Yahoo forum, we are encouraging all of our members to get a copy of the newest (Feb., 2017) book by Dr. Richard Horowitz, MD (“How Can I Get Well?”) and to read Chap. 4 because that chapter contains all of the very newest research about persistence of pathogens associated with chronic Lyne disease, plus the very newest combinations of antibiotic protocols which are working when other older antibiotic protocols have failed. The book is available on Amazon. So please don’t accept that Lyme is “incurable” because as long as you still have breath left in your body, then Lyme is not incurable.
https://www.amazon.com/How-Can-Get-Better-Resistant/dp/1250070546/ref=sr_1_1?s=books&ie=UTF8&qid=1490121195&sr=1-1&keywords=Horowitz+%2B+Lyme
You might also want to join our TxLyme Yahoo forum (link below) so that you can obtain information about our ILADS doctors and other “Lyme-friendly” doctors in Texas. These messages with info about our LLMDs are all sent privately though, according to our forum rules, because we want to protect our LLMDs from persecution by IDSA doctors, whose national IDSA headquarters is based here in San Antonio, TX. Also, we did succeed in passing protective legislation for our Lyme doctors a few years ago, based on a clause in our 150 yo Texas Constitution, so our state is a wee bit more Lyme-friendly than in many other states in the US.
https://groups.yahoo.com/neo/groups/txlyme/info
Elizabeth N.
God bless you, Ruben Sims! I was an Air Force dependent for 12 years and suffered with Lyme Disease for the past 40 years. No one caught it. I insisted on testing, but I was told I was a negative result. For the past two years I have finally been diagnosed (in the civilian world) and still am in the midst of treatment. I feel for you, buddy. I know how the military doctors and bureaucrats behave. We must be tough old birds to go thru this hell and retain our sanity in the end. Love You!
I’m sorry you had to go through all that. But fight the good fight, Ruben! And thanks for the article.
Yes I have went undiagnosed, ms miagnosed and not believed. I as actually admitted to a hospital with testing done that showed I had bilirubin, kidney issues, high platelets, high neutriphills with severe confusion and my speech was impaired. They released me and sent me to a Psychiatric hospital instead where they kept me without any court appointed attorney for 4 month shoving forced antipsychotics down my throat . After I was released I tested positive for several tick born infections, Malaria, Leishmania, Meningitis, Pneumonia, Cytomegalovirus and EBV and other Viruses as well. Then was still refused treatment. Now I have Lymphatic Cancer from all of those untreated Viruses and Parasitic Infections infiltrating my Lymphatic System. It’s beyond me how people can actually believe that we have the World Best Health Care when you can’t be properly diagnosed and then refused treatment and then those involved cannot be held responsible! All of these are registered along with treatment on the CDC and World Health Organization for available information. It’s highly unfortunate that we as tax paying citizens are money is going towards research however denied treatment and respect. And now I cannot even be taken seriously because It is now in my Medical History of being diagnosed with a Mental Disorder which they refuse to correct even when I went back to the Hospitals with my lab tests. I am tired of being treated with disrespect, ignorance and undermined by those in the Medical field are the very ones who are disinformed, ignorant themselves. And then when you have proof still refuse to treat? It’s a Crime and should be punishable! I was just reading an article just how bad our Medical System is because of a faulty system designed by Specialties that send you in circles and all they want to do is find your health under their specialty and if they can’t they don’t offer you any further help. Then when you do go to a proper specialty they are not trained nor knowledgeable nor do they understand tat Viruses and bacterial infections left untreated create further disease in the body that leads to cancer. It’s easily understood if you understand Microbiology and how the blood works as well as all systems of the body interplay to function as a whole. And it’s a crime when Disease Becomes the arena of Politics !
Dear Ruben, Thank you for your service and for sharing your story. I think the way our vets are treated is a disgrace, but your treatment was horrific! Hold your head high and proud! Don’t let them bring you down! We have to stick together!
A sad story, to bad it’s not a story at all it sound just my life only the VA is still out to lunch. All I have to ad is I have had to have a defibrillator put in my chest because of the damage to my heart for a tick I had living under my LBE line for at least 36 – 48 hours back in 1987. A Neurologist diagnosed my advance stage of Lymes in 2017. Looking back to 13 years of military medical records shows a rash and every 3 to 4 weeks going to sick call for flu like symptoms. Who gets flu like symptoms every month for 2 years? Then it went dormant or not as bad well till 2013 when like a ton bricks on the head my heart started to fail.
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