posted
Sorry to you neurolymies. I've tried my best to break this up; It may be hard for you to read even still.
Any comments from our military members?
-----Original Message----- From: Tom, Lis, Sweetpea, & Tiffany [mailto:[email protected]] Sent: Wednesday, April 09, 2008 11:43 AM To: Smith, Jack, Dr., OASD(HA) Cc: [email protected] Subject: ILADS Treatment
Dr. Smith,
It is my pleasure to be writing to you today. My name is Lisa Limbaugh and I am writing to you today at the request of Colleen Nicholson.
I know Colleen, not by face, only online. You see, Sir, in my search for adequate treatment for myself, I have turned to the internet,
as I have been shunned by the military treatment facilities and it was through my vast internet research that I came into contact with Colleen.
Part of my contact with her has been to email her about her experiences with Lyme disease and it's treatment, as well as her experience with Tricare.
If I may, Sir, I'd like to tell you briefly my story. I was born and raised in Indianapolis, Indiana, close to Fort Benjamin Harrison
and I can remember at the young age of 3 being fascinated by the vehicles I would see coming from there.
I loved to see the personnel in uniform and talked at length to my parents about being in the military.
Being a girl, no one ever thought I would really grow up to be a soldier, but that is what happened.
On 8 August 1988, I took the Oath of Enlistment to serve in the Army. My lifelong dream had been realized.
I went to Basic Training at Fort Dix, New Jersey and Advanced Individual Training at Fort Benjamin Harrison.
I left the states in April of 1989 to serve in Ansbach, Germany with HHC, 1st Armored Division.
The Division was called up for Desert Storm in October of 1990 and I deployed with my unit December 26, 1990.
Shortly after deployment I began to feel poorly; nothing I could put my finger on, just felt worn out all the time.
I was ill on numerous occasions while deployed and once I returned to Germany (April 1991) I began to seek medical attention for flu like symptoms with fatigue and a rapid heartbeat.
The medical personnel had no idea what to think of my condition and dismissed my complaints.
Because I felt like I had the flu every day, I didn't have the energy to attend PT. When my supervisor's asked me what had happened and why I was going to the doctor so often, I told them of my concern for my health.
It was at that point the suggestion was made to me to submit paperwork for a new program being instituted across the military to draw down the number of personnel by letting service members out before their commitment was up.
After some deep thought, I put in my paperwork. I was discharged 10 October 1991.
A couple of years went by in which I was a housewife. This allowed for me to rest and seemed to make many of my symptoms subside.
Although, I continued to suffer fatigue, which came and went in spurts, I was able to work at Wal-Mart and attend college, living somewhat a normal life.
After some time out of the Army, I missed serving. I contacted a recruiter and joined an Army Reserve unit in 1993, for which I happily drove 2 hours one way.
I attended drill and annual training, passed my PT tests, and was selected to attend the Primary Leadership Development Course at Fort Chaffee, Arkansas; shortly after which I was promoted to Sergeant in 1995.
I was again promoted to Staff Sergeant in 2001 and felt I was well on my way to further promotions and then retirement.
Training at Fort Dix, Fort Benjamin Harrison, Germany, and Fort Chaffee involved a great deal of field time and as a precaution against ticks and/or bug bites, we would spray ourselves with Army issued bug spray.
During our training, on more than one occasion, the spot I ended up lying in was infested with ticks, some with the white mark on their backs.
I would have gotten in a lot of trouble if I had made a noise or ran from that spot, so there I lay, surrounded, and in some cases covered, in ticks with the impression the bug spray would take care of me.
It was, in particular, after my training at Fort Chaffee that I began to suffer more severely.
Symptoms that had previously subsided or lessened had worsened and new issues developed.
My fatigue worsened, I began to suffer debilitating migraines, muscle pain, and fatigue, and getting out of bed was difficult.
I continued to tirelessly work, go to school and perform my Reserve duty.
In 1998, I began to complain more and more to my medical providers.
They would treat the symptom I complained of and send me on my way.
I was never tested for anything other than the routine testing. During my pregnancy with our first daughter (born July 25, 2001) I suffered extreme fatigue, preterm labor at 28 weeks with bed rest, and other complications.
Again, although I complained, my symptoms were due to the demands of pregnancy. During my second pregnancy, my symptoms worsened to a point that at 20 weeks I was placed on bed rest.
It was at this point that I had to make the decision, again, to leave the military. After 12 years of service, I had to face the idea that I could no longer serve.
My fellow unit members were being deployed and I was at home, no service to any of them.
After our daughters were born, my symptoms did not subside; pregnancy will do that, I was told.
By 2004, I could hardly get out of bed and to do so followed by a shower was all I could muster. My life was confined to our home. Often my husband, also in the military, would come home early from work or a TDY because I was too ill to care for our children.
Since my active duty service, I have seen well over 50 licensed medical professionals.
I've seen (both military and civilian) VA personnel, family practice physicians, Internal medicine physicians, Rheumatologists, endocrinologists, and Psychiatrists.
I have also received several different types of physical therapy and trigger point injections.
All of the family practice, internal medicine, rheumatology, and endocrinology physicians attempted to treat me with anti-depressants, migraine medicines, pain medicines, limited sex hormone replacement; but not a one offered to run tests outside of the normal, routine blood or urine testing, despite my asking for further testing and treatment on numerous occasions.
Through all of these physicians I have been diagnosed with Fibromyalgia, Chronic Fatigue, Attention Deficiet Disorder, Migraines, breast abnormalities, recurrent left forearm lesion, chronic upper back and neck pain with loss of motion, fertility issues, irregular menses, recurrent rashes, depression, anxiety, chronic joint pain, chronic muscle aches, insomnia, unexplained weight loss, and unexplained weight gain.
Many of the medical professionals I have seen simply didn't believe me and dismissed my complaints, thinking me some sort of hypochondriac or drug addict looking for medicine.
I wasn't asking for strictly controlled, addictive substances, just resolution to my health problems.
Without adequate treatment from any of these doctors and specialists, I had to research the internet and read books about my symptoms to find my way to a doctor willing to look beyond the normal and routine; utilizing the tools, medications, and supplements available today to get me on the path to recovery.
My years of research led me to my current civilian MD specializing in treating chronic fatigue, fibromyalgia, Gulf War Syndrome, and infectious diseases.
The practice does not accept Tricare or any other form of insurance, so I have to pay out of pocket, file my claim with Tricare myself, and await payment, which is usually 25% - 50% of the amount I have to pay.
I am limited on the extent of treatment I can receive from my specialist because I am unable to work and my husband's income barely allows for minimum expenses for treatment.
I am fortunate that there is an office in Denver, an hour and a half drive for me.
At my first appointment with her in July 2006, my specialist ran extensive blood, saliva and urine testing, in addition to a lengthy physical exam.
From those she has diagnosed me with Growth Hormone deficiency, Pituitary dysfunction, Adrenal insufficiency, Hypothyroid, Chronic Fatigue Syndrome, Unspec Fibromyositis NOS, Migraine, Irritable Bowel Syndrome, PMS, Hyper Coagulation and Coagulation Defects, low DHEA and Pregnenolone, Disseminated Candidiasis, Viral Syndrome, Mycoplasma Pnuemoniae, Epstein-Barr virus, low Cortisol, low Progesterone, low Testosterone, low Iron and Ferritin, as well as Lyme Disease.
I continue to improve with this treatment plan and have also submitted a claim with the Veteran's Administration for Compensation and Pension.
It is still in process after a year's time.
Sir, I am writing to you to respectfully ask that you and other MHS personnel consider educating our military medical professionals based on ILADS guidelines.
It has been my experience with the military medical treatment facilities that medical professionals are vastly uneducated about Lyme disease, as well as Gulf War Syndrome.
As you well know, there are many service members returning from deployments, coming home with similar health problems of GW service members.
How can we serve our current and former service members with health problems like Lyme disease or GWS without proper and effective education about the treatment of these diseases.
I am thankful for the opportunity to bring to you my story and hope that you will consider this and other requests.
Very respectfully,
Lisa Limbaugh
In a message dated 4/9/2008 5:26:17 P.M. Eastern Daylight Time, [email protected] writes:
Dear Ms. Limbaugh, Thank you for your note.
I would like to gather some information on TRICARE services available in the Colorado Springs area, and then will provide a more complete response.
Colleen Nicholson Research Assistant to Dr. Burrascano, MD
-----Original Message----- From: Smith, Jack, Dr., OASD(HA) [mailto:[email protected]] Sent: Wednesday, April 16, 2008 10:47 AM To: [email protected] Cc: Smith, Jack, Dr., OASD(HA) Subject: FW: ILADS Treatment: Lisa Limbaugh
Dear Ms. Limbaugh,
Thank you very much for your e-mail of 9 April, which raised two issues.
First, you related a personal history of difficulty in obtaining a diagnosis of and treatment of medically unexplained symptoms from a series of military and civilian providers.
Second, on behalf of Ms. Colleen Nicholson, you requested that military medical professionals be educated on the International Lyme and associated Diseases Society (ILADS) guidelines.
I sincerely regret any difficulties you may have experienced in being evaluated and treated within the Military Health System (MHS) in recent years.
If you feel that any members of the TRICARE health care delivery team have failed to provide you with appropriate and timely health care services, or access, or quality of care, you have the right to file a written grievance.
As you live in Colorado Springs, CO, your grievance may be filed with: TriWest Healthcare Alliance; Attn: Customer Relations Dept.; P.O. Box 86036; Phoenix, AZ 85080.
Your second issue relates to a request you are making on behalf of Ms. Colleen Nicholson, of the Military Lyme Support group.
Ms. Nicholson is an active advocate for the adoption of the ILADS guidelines.
However, the Department of Defense does not routinely endorse clinical practice guidelines from non-governmental organizations.
Our medical professionals are trained to practice evidence-based medicine in providing care to our beneficiaries.
There is a strong sense among infectious disease professionals that the Infectious Disease Society of America (IDSA) guidelines on treating Lyme disease reflect the best and most current evidence-based approach.
However, within the context of their credentials, training, and best available evidence, all MHS professionals and TRICARE network providers are free to use their best clinical judgment when treating patients.
All of the military services have post-graduate fellowship training programs in infectious diseases.
Graduates of these accredited training programs go on to serve as valued clinical consultants to the larger staff of primary care providers taking care of all of our beneficiaries.
Our military providers are attuned to the risks of Lyme and other vector-borne (those associated with insect bites) diseases to our military personnel and their families, and our treatment facilities have at their disposal a variety of standard and advanced diagnostic tools.
Furthermore, all military and DoD civilian physicians are required to participate in regular continuing medical education to maintain their clinical credentials, their medical licenses, and their professional standing.
I hope that you will find this information useful. We appreciate your interest on your own behalf and that of the well-being of our military personnel and other beneficiaries.
If you have any further questions, please contact CAPT David Arday, MD, MPH, USPHS, at 703-681-0064. Sincerely, Jack Smith, MD, MMM, Director for Clinical and Program Policy Integration
-----Original Message----- From: [email protected] [mailto:[email protected]] Sent: Tuesday, April 29, 2008 9:10 AM To: Smith, Jack, Dr., OASD(HA); [email protected]; Granger, Elder, MG, OASD(HA)/TMA Cc: Casscells, S. Ward, Assistant Secretary of Defense, OASD(HA); [email protected] Subject: 2nd Request: Updates on Lisa Limbaugh
Gentlemen,
Are there any updates on assisting Lisa?
Sincerely,
Colleen Nicholson Research Assistant to Dr. Burrascano, MD Founder, Military Lyme Support �:*�`����`*:���:*�`����`*:���:*�`����`*:�
----------------- Forwarded Message:
Subj: Re: ILADS Treatment: Lisa Limbaugh Date: 4/15/2008 11:06:18 A.M. Eastern Daylight Time From: Jcn4jc To: [email protected] CC: [email protected] , Jcn4jc
Sir,
Are there any updates on Lisa's case?
Thank you,
Colleen Nicholson
In a message dated 4/29/2008 9:45:34 P.M. Eastern Daylight Time, [email protected] writes:
Dear Ms. Nicholson, I sent Ms. Limbaugh information by email on April 16th about how to get additional assistance from TRICARE customer service representatives in her region, which I trust was helpful information.
Was the information sent from Dr. Smith helpful in any way, shape or form?
Thank you,
Colleen Nicholson Research Assistant to Dr. Burrascano, MD Founder, Military Lyme Support �:*�`����`*:���:*�`����`*:���:*�`����`*:�
In a message dated 4/30/2008 6:38:16 P.M. Eastern Daylight Time,
Ms. Nicholson,
Thanks for your efforts in following up on this matter.
Unfortunately, the letter I received from Dr. Smith was not helpful in that I have been told many times I can write a grievance, however, I am not interested in writing a grievance, I am interested in getting the care I need to get my health back and be able to care for my children again.
Filing a grievance will only take time and the response I would receive, I fear, wouldn't be much different than what I received from Dr. Smith.
In addition, Dr. Smith stated,
``All of the military services have post-graduate fellowship training programs in infectious diseases.
Graduates of these accredited training programs go on to serve as valued clinical consultants to the larger staff of primary care providers taking care of all of our beneficiaries.
Our military providers are attuned to the risks of Lyme and other vector-borne (those associated with insect bites) diseases to our military personnel and their families, and our treatment facilities have at their disposal a variety of standard and advanced diagnostic tools.
Furthermore, all military and DoD civilian physicians are required to participate in regular continuing medical education to maintain their clinical credentials, their medical licenses, and their professional standing.''
I have yet come across anyone with the specialty Dr. Smith discussed nor have I been offered the chance to see one of them, even though I have positive testing in my military medical file.
The only testing I have been offered for Lyme Disease was requested by my civilian specialist, which I had to pay for out of pocket.
I was disappointed with Dr. Smith's response but hope another member of MHS will be able to assist all of us suffering from Lyme Disease!
Sincerely, Lisa Limbaugh
Posts: 19 | From Colorado Springs, CO | Registered: Jan 2008
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bettyg
Unregistered
posted
lisa, i replied on the other post,
but lymies when you call PALLONE ^& KENNEDY MAY 7TH, please bring up our VETS/ACTIVE MILITARY CAN NOT GET TREATMENT BY LYME LITERATE MDS!
they have to go to military drs. who PRACTICE IDSA,INFECTIOUS DRS. way only.
bring up to them A.G. Blumenthal's recent outcome of his anti-trust suit against idsa of ALL THE CONFLICTS OF INTEREST!!!
PLEASE speak up for our vets/active military when you are speaking up for yourselves!
thanks lisa for sharing your emails!!
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posted
i am having a similar problem now too. The VA (veterans affairs) is refusing to treat me for lyme when i have had 3 doc outside the VA tell that that it was lyme. Also had postive testing (once) but not with the VA lab it was outside. So after trying to work with them for a year and half, I am now disable, out of work, school and cant even drive. Started my IV treatment with doc outside the VA and am trying to get the VA to reemburse me. Just contacted my local congressman last week. MAybe he will help me out. Any other ideas on what to do or who to contact would be appreciated. Thanks
Posts: 23 | From myrtle beach sc | Registered: Feb 2008
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daise
Unregistered
posted
Hey Surfrider!
You've been getting the revolving door treatment from the VA, like I did. People with Lyme signs and symptoms are bad people, to the VA. That's loud and clear from the VA.
The VA refused to diagnose and treat me for Lyme.
The VA's orders are to humiliate us and make us live in pain, pain, pain and neglect--oh yes, they carry out their orders to the "T." They are to murder and / or to attempt to murder veterans and that is precisely how they proceed.
None of them can claim innocence.
Apparently, none of the VA people, nor those who run and work in active military medical installations has ever considered the reputation of their children and their grandchildren and their great grandchildren, in the historic Lyme battles, which have gone on for decades.
What they are doing to us, they deliberately and maliciously did to active military and veterans with PTSD, Gulf War Syndrome, and so on.
Right from the start, when you sign the bottom line to serve your country, you become immediately expendable and not or hardly health-recoverable. It is the ultimate neglectful, lieing entity.
Heck of a thing to be punched in the nose by Uncle Sam. Uncle Sam falls behind the idiot-moron IDSA guidelines that guarantee chronic Lyme disease forever.
Unless, that is, the vet somehow gets treatment outside the VA and you and I did. But it was a huge struggle, and left deep emotional and physical wounds because we are now chronic.
Being a Veteran or active military is a double threat, compared to the general population.
I know how hard this is because I have personally been through it. I'm thrilled you are getting IV Rocephen--that's wonderful! Keep your receipts.
For background, if you haven't already, read dig/me, proudtoserve, GWvet and my posts here in General about active military and veterans with Lyme.
Have you been in contact with Colleen Nicolson? She's with Military Lyme Support on Yahoo Groups:
You might look at the thread with posts I copied here with information from Colleen, for example, about who to write to in the military / VA. Not that you'll get treatment paid for, but you can email your story of blood, sweat and tears--and that's something.
The VA and active military medical installations have chosen IDSA over ILADS. That is to choose evil over good.
Proudtoserve and GWvet wrote outstanding letters, recently--proudtoserves is meant for major press exposure. GWvet's is a letter of integrity to someone influential in the military. Have you noticed their threads here in the General fourm?
I got state Medicaid (and had to argue with the state which said veterans can go to the VA and do not need state Medicaid.)
What about getting Medicaid with your state?
Also, here's a link that might help you get Lyme prescriptions:
Did you know that you can apply for a VA pension for a disability, even before you are 65? YES. If you have SSDI, that SSDI may be more, so the pension wouldn't do you any good. Maybe SSDI is less.
Did you know that some states fund--that's "STATES fund"--housing for homeless veterans? Just so you know, just in case ... If your state doesn't have one, you can often go to another state's.
Google "homeless veterans" to get the National Coalition For Homeless Veterans and search the site thoroughly.
Take good care of yourself, you're a true warrior!
Did I also tell you now or before that the VA neurologists deliberately misdiagnosed me with a stroke, by 2 MRI's?
Neither of those MRI's showed a stroke. They lied.
Truth is, 6 VA neurologists stared at my Bell's palsied face, with it's physical signs. It took 4 months for the Bell's palsy to go away. Then my hearing wavered for a year.
My PCP fully ignored this. As she did--and a neurologist did--my severe, constant head pain.
I'm sorry you're having such trouble getting help! The VA is a very difficult system to deal with and seems to increase stress levels instead of lessening it.
I had to go outside the military/VA system to get help and I'm glad to hear you did, too. Hurts the pocket, though.
Good luck with your treatments! Lisa
Posts: 19 | From Colorado Springs, CO | Registered: Jan 2008
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