LYMEPOLICYWONK: Survey Results Published! Chronic Lyme Patients Suffer Poor Quality of Life and High Rates of Disability and Unemployment
LDo’s most recent survey of over 3,000 patients with chronic Lyme disease was published today by PeerJ. Although the Centers for Disease Control (CDC) recently increased the number of Lyme disease cases in the US from 30,000 to 300,000, little is known about how chronic Lyme disease affects patients. We decided it was time to ask them. This post will provide an overview of the findings and future blogs will focus on other findings regarding coinfection rates, rashes, disability, symptoms and other topics. The study was a joint effort of LymeDisease.Org and Prof. Jennifer Mankoff at Carnegie Mellon University.
Chronic Lyme disease is associated with a poorer quality of life than most other chronic illnesses, according to a newly published comprehensive patient survey. Patients with chronic Lyme disease have high disability and unemployment rates and, compared to the general population, are five times more likely to visit healthcare providers and twice as likely to be seen in emergency rooms.
The CDC estimates that more than 300,000 people contract Lyme disease every year in the United States. Approximately, 36% of patients diagnosed and treated early remain ill after a short-term course of antibiotics. The survey used standard questions developed by the CDC regarding health related quality of life.
The study found that chronic Lyme disease is associated with a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. Fair or poor health was reported by 73% of patients with chronic Lyme disease. In comparison, only 16% of those in the general population report fair or poor health.
The survey also shows that patients with chronic Lyme disease have high disability and unemployment rates. Over forty percent of patients with chronic Lyme disease reported that they currently are unable to work because of Lyme disease and 24% of patients report that they have received disability at some point in their illness. This compares with 6% of the US population who are unable to work due to illness.
Most patients report three or more symptoms as severe or very severe. The most common severe symptoms include fatigue (48%), sleep impairment (41%), joint pain (39%), muscle aches (36%), and other pain (34%). Physical or mental health problems limit Lyme patient functioning on 19 days each month compared to only two days per month for the general population.
Chronic Lyme patients also use healthcare services more often. They are five times more likely to visit healthcare providers and twice as likely to be seen in emergency rooms as the general population.
In a nutshell, this study shows that most patients with chronic Lyme disease have severe symptoms, require lots of medical care, and suffer a low quality of life with high disability and unemployment rates.
Future blogs posts will focus on the rate of co-infections, symptoms, presence of rash, basis for diagnosis and other significant findings of the study.
The full article is available open access–meaning you can read it for free. Johnson, L., Wilcox, S., Mankoff, J. and Stricker, RB (2014) Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey. PeerJ, DOI 10.7717/peerj.322.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Executive Director of LymeDisease.org. Contact her at lbjohnson@lymedisease.org. On Twitter, follow me @lymepolicywonk.
It took 20 yrs to get my LDdiagnosis, most spent in bed.I built 3 business parks, created hundreds of jobs.Husband has 12 important wireless technology patents.He, too, has LD We lost our savings, our friends, our careers, nearly our house. More importantly, society lost us and our highly educated contributions. This miserable disease cost us $millions. We are held hostage by pharmaceutical cos, insurance cos.My entire SS check goes for meds.We’re lucky we can buy them. Thousands go undiagnosed, misdiagnosed and untreated. Lyme Disease in America is a travesty. The CDC MUST BE HELD ACCOUNTABLE.
I agree, please provide the name.
You are correct. I have lost my career in the entertainment business (was a screenwriter for TV and features) have spent almost all of my savings on LL MDs, meds, tests, etc…Tests and meds SHOULD be covered by my health insurance, but nope, they won’t cover them.
I have lost friends, I have been marginalized. I have no joy in my life. None. I would rather have had a cancer diagnosis than this horrific and insidious disease that the CDC lies about and the IDSA governs like a mob boss.
I am sickened and disheartened by this country. I was born in the USA but I have no patriotism left for this horror show of a country.
CURE THE CDC. TREAT LYME PATIENTS WITH THE SAME RIGHTS AND HEALTH CARE INSURANCE that other diseases get.
Check out methylation–methylation collapse is the cause of symptoms. Detox is THE key to this disease and any disease. Immune and detox function needs to be restored before symptoms can be alleviated. LLMD want to begin with killing the lyme and co-infections first, but the immune system needs to be on track before killing anything or symptoms will increase or become worse. You CAN be symptom free with lyme and THEN start killing. My girls are with a place in Dallas right now that is doing just this. My older daughter has seen results already, as have I (although I had no debilitating symptoms before starting a basic program with them). My younger daughter is still having a lot of symptoms, but I have all the confidence in the world that she will be symptom free very soon. We started with them about 3 1/2 months ago.
KG,
Can you say the name of the facility/providers where your family is being treated and what the treatment consists of for detox and increasing the immune system and detox functions? Thanks so much!!!
I also have been diagnosed with Lyme along with other illnesses that accompany it. I live in Dallas and was wanting to know who you and family are being treated by. As you know, it’s very difficult to find Doctors that treat Lyme. I currently am being treated by a Dr. But he will be retiring shortly and I don’t know who else to go to. Would you give me the name of your Doctor? You can personally e-mail me and I will provide you with my phone #.
Yes, please provide the name.
KG,
Yes I would like to get the information on where you and your love ones are being treated, if possible please? Thank you!
I live in Houston and currently travel to New York for treatment. Can you share the name of your doctor?
Where is the place in Dallas?
I would be interested to know your path.I have trouble detoxing.
Thanks, M.Singler
May I ask where in Dallas?
My daughter is struggling with Lyme. I am looking into all of her treatment options. Could u share more about the place in Dallas?
You’re right KG. Solving my methylation issues helped me a great deal. Methylation issues can be found by completing a DNA test. I used 23andMe mail in saliva kit. Then you will have access to all of your DNA online. The raw data or genome mapping can be run through a free website like GeneticGenie.org which will tell you which genetic mutations you have in your detox, methylation, neurotransmitter and even cancer risk profiles. After I found out I have methylation issues, as well as some others, I was overwhelmed and didn’t know what to do, so I found a genetic counselor who specializes in fixing these issues with supplements etc. in order to bypass the mutated gene so that it is not expressed. She explained how certain methylation supplements would not work for me due to the high oxidative stress that the lyme causes and that a lot of the popular methylation supplements could actually increase my symptoms. The protocol she personalized for my lyme case has really made a major difference for me. This has definitely helped my chronic lyme symptoms and I even finally had a negative ANA test while using her protocol along with my herbal byron white lyme and babesia protocol. If you’re looking for someone to help you with addressing your DNA I would recommend her. Her website is http://www.elevatedhealthsolutions.com
I was diagnosed after 7 years in late stage, terrible pain, fatigue, gut, bladder, heart, loss of feeling in hands and feet, many nights without sleep, and moderately severe Alzheimer’s. I often didn’t know the date or the year and could not have filled out a survey because I couldn’t do even simple sequential work: name, address, zip code. Now I’ve been medicated since 1997, with just two years of antibiotic free health without relapse, and much has come back. I no longer live with pain, and I can think and type this response. Lately, however, I get mentally tired after short bursts of an hour or so of work or reading and I need to sleep 3-6 hours to recover.
I have been robbed of 29 years of health due to Lyme Disease. It is difficult to even try to explain the journey I have been on. When you have your health taken away from you, you have nothing left. It affects everything in your life: Your family is ripped apart, it affects your career, it affects your relationships, it changes everything. And finances……well, finances are torn to bits. With all the doctoring and trying desperately to find out what is wrong with you and then to find a solution……quite honestly living with Lyme Disease is certainly hell on earth. Without my faith, living would be next to impossible.
After having and being heavily treated for Lyme for approximately 10 years by a LLEMD, I am now having flare ups every Spring & Winter – almost exactly to the day from the previous year. In between, I am totally pain & symptom free without any pain medication. When I do have my flare ups the muscle pain is almost unbearable – nothing touches it until after the 3rd day on antibiotics (Cipro). I take them for – 5days on and two days off – for 6weeks. During that time I have lymphatic drainage, chiropractor, massage therapy to help me through things. One day, I pray that it will stop coming back! Unfortunately, I
am being treated now by my family physician who is treating as needed – flying by the seat of his pants not understanding or knowledge of Chronic Lyme.
In 1986 i had the first symptoms after more than 100 tick bites.
From 1986 till 2005 more than 12 Elisa en WB tests, all negative.
I had a extreme weight loss. I am 1.96 cm long en normally 98 kilograms.
In that period 57 kilograms and i was afraid to die. More than 10 different
diagnoses over the years. I was lucky to find a neurologist who believed me.
In my brainscan were more than 20 white spots visible, from 1 centimeter to strings of a few millimeters. Yes, neuroborreliosis. Than i became a victim between the Dutch CBO-guidelines and the ILADS guidelines. Still i am fighting, but after 28 years chronic lyme and no solutions, my energy is gone. Physical- and psychiatric
disorders, social contacts are gone. I am afraid to see people ore make contact, answer the telephone, go outside my house and more. Rheumatic problems and
a overall bad condition. Always tired. I sleep 14 hours and when i wake up, i am
broken. And then they say that i am lucky because the outcome from the highest court that i have a occupational disease makes that i am financially independent.
Yes, i am lucky??
Went to conference w/friend in 2004 in S.F. My symptoms were like what the pathologists described so I asked to be tested by my MD. Positive result but told I didn’t have it bad enough to treat. Fast fwd to 2010…FNP saw old results and started me on antibiotics. 2 years later I had to stop. Mind over matter life. Have rebuilt immune system on my own and research daily. Still have flair ups and need 14+ hours sleep daily. Joints crenilated and frozen in shoulders, numb right hand, spasms, broken sleep, etc… Now divorced, alone and broke. Can’t afford anymore treatment. Life goes on around me but people don’t understand my condition. Work nights w/hospice doing elderly comfort care…it could be worse. Isolation with a smile.
I’m sorry to be a blog hog but I forgot to mention what MMS is made of. One part stabilized oxygen and one part liquified fruit acid. Like dried lemon peel or vinegar. Mix them immediately before taking and they become active.. killing all harmful pathogen’s and leaving healthy cell’s healthier!! The diseased cell’s die off and flush from your system as common table salt. It’s completely natural physic’s and work’s like gangbuster’s.. At first I thought maybe the word “Miracle” in the name would be an immediate turn off to people but now I completely understand that their could be no other name appropriate in realtion to our state of healthcare today. Or anyday… this is a biological MIRACLE!! The above brief description of mixing is by no mean’s precise, you must get on the website, read the free online book and order the other one along w/ some MMS if your smart.
MMS is cheap. $25.00 for the MMS and acid solution that will last for years and years. You only take a few drop’s at a time. Good thing the FDA doesn’t have ahold of this eyh?
I’ve been reading the forum. What is MMS and where do you purchase this?
I have spent quite a lot trying to treat myself in the absence of any respectful treatment from the NHS. I am spending more than I earn at present, because I order new treatments usually coming from overseas so to avoid excessive transportation costs repeatedly, I have to bulk buy. My primary therapy is homeopathy and because of this I am still able to manage the work i have plus some other activities.
Linda,
I’ve had Lyme Borreliosis Complex (LBC) disease since 2010. I am a certified fitness trainer and health coach, thus, I lived a healthy lifestyle and experienced optimal health prior to contracting LBC.
This past year (2013) my out-of-pocket medical cost exceeded $16,000 which included prescriptions, doctor visits, air travel, car mileage to airport, taxi fare to see physician, nutraceuticals, organ supporting supplements, monthly lymphatic drainage massage and my monthly insurance premium. My prescriptions alone were over $12,000 with higher co-pays and some drugs not covered at all. Because of my current health status I am unable to work and my husband is retired so our combined medical cost for 2013 was a little over 20,000. My husband had to get into his retirement funds just to cover my high cost of medical treatment.
In 2014 my medical cost for LBC treatment is expected to be higher than it was in 2013 because I will begin IV treatment in May. Since we recently moved from Mississippi to Alabama we inquired about health insurance in Alabama. Thankfully with the new insurance laws passed insurance companies cannot deny coverage for pre-existing health issues. The insurance agent suggested I check with Health Insurance Marketplace since our taxable income was .00 in 2013 with all of our itemized deductions. Most Lyme victims, like myself, with little household income are eligible for tax credit subsidies on our insurance premiums but many lyme disease victims are not aware of the tax credit subsidies. I inquired the early part of March 2014 and had to be signed by or before March 31, 2014.
It’s too late now to enroll for 2014, however, if you have not signed up already I would encourage you to do so in the next Enrollment for tax credit subsidies that begins in October. I did qualify for a tax credit subsidy of $176 monthly towards my $487 insurance coverage so the tax credit will save me $2,112 in 2014. Every little bit helps since my on-going out-of-pocket expenses for treatment of LBC are exorbitant and presently seem unending.
Medical cost were just a drop in the bucket in 2010 since I was not diagnosed with Lyme disease until September 2010. Most of the low dose prescriptions were either $25 or $10 co-pays and $25 co-pays for the various physicians.
Early in my illness (summer 2010), I saw several physicians whom misdiagnosed my mystery illness. After a lot of personal research I helped unravel the mystery of my progressive health crisis. I began my first Lyme disease treatment with a Lyme literate physician in Alabama whom confirmed my self diagnosis of Lyme disease after a positive Western Blot as well as a clinical symptomatic evaluation. I was prescribed a low dose non-aggressive antibiotic treatment protocol that proved to be ineffective.
In my first 18 months of Lyme treatment, my medical cost for co-pays on prescriptions and physicians began adding up as I became symptomatic with the many symptoms and conditions associated with late stage LBC requiring office visits with additional specialist. My Lyme treatment medical cost began a steep climb in 2011 and each year has exceeded the previous year.
Only a small percentage of my Lyme physician visit charges are eligible for reimbursement benefits since my Lyme literate physicians are not network providers. Since office visits are longer than a general practitioner the charge is higher. Of course full payment is due at time of each office visit. I am responsible for filing my own insurance.
In March 2012, after spending two weeks bedridden with debilitating back issues which are associated with musculoskeletal Lyme disease, I came to the realization that I was not improving after 18 months of daily antibiotics under my Alabama physician’s care. I knew then that it was time for me to secure a new Lyme literate physician since I began having issues in all of my body systems. I was someone whom was extremely active prior to acquiring LBC so I was not going to settle for inactivity and confined to a bed or wheel chair.
I researched Chronic Lyme literate Physicians whom had a high success rate in curing and/or a high percentage rate of restoration of health for late stage Lyme disease. After extensive research I made an appointment and began treatment with Dr. Jemsek in Washington, DC in May 2012.
Dr. Jemsek informed me up front that treatment for chronic LBC would be expensive stating that “LBC is a disease for the wealthy” requiring a minimum of 2-3 years treatment that most insurance companies deny payment on many of the necessary aggressive high dose antibiotics that Dr. Jemsek would be prescribing. Dr. Jemsek also prescribed many nutraceuticals to strengthen my immune system and other organs. Insurance companies generally follow the treatment guidelines by the Infectious Disease Society of America (IDSA).
Unfortunately IDSA’s current treatment guidelines only address early stage lyme. As you probably know early stage lyme is when most victims either see the attached tick or the red bulls rash and seek immediate treatment.
There are just a few Chronic Lyme literate physicians across our country so most chronic Lyme disease cases go undiagnosed for years allowing the disease to affect every body system. Some of the Lyme literate physicians only treat Lyme borrellia and not co-infections such as babesia, bartonella, and other co-infections generally transmitted by the tick bite. That is why Dr. Jemsek has termed the disease as Lyme Borrelia Complex disease (LBC).
One of the first co-infections Dr Jemsek treated me for was Babesia. My insurance denied payment on the $1200 liquid suspension prescribed to treat Babesia which mutates red blood cells in bone marrow. Most likely the cause of my spinal issues. For Lyme Borrelia, Dr. Jemsek prescribes a stacked mix of antibiotics scheduling treatment two weeks ON and two weeks OFF to give liver and other organs a recovery period. There’s generally a different antibiotic cocktail mix on week 2 and never a single antibiotic since Lyme borrellia is smart and can become resistant to a single prescribed antibiotic. Depending on my progress at office visits which are generally scheduled every 3-4 months I may begin a different antibiotic cocktail treatment protocol.
Even though much of Lyme disease treatment is denied health insurance benefits, in the end the cost incurred by insurance companies are higher since many late stage Chronic Lyme victims later require treatment by multiple physician specialist.
I don’t place the blame on insurance companies for denied health benefits. I blame IDSA (Infectious Disease Society of America), NIH (National Institute of Health), and even CDC (Center for Disease Control) for the high cost of LBC treatment. Eleven of the fourteen 2006 IDSA’s Lyme Disease guideline authors and/or their employers have gain a profit from the IDSA’s guidelines currently written.
In 1983, NIH and CDC scientist as well as some of the leading medical universities raced to file patents which now profit from ownership of “live organism”, two-tier testing for Lyme, symptom-relieving drugs necessary for treatment of chronic Lyme and the many conditions and symptoms associated with late stage LBC.
I am troubled that NIH, CDC and the majority of IDSA’s panel members put PROFIT ahead of Health.
Despite lobbying by Dr. Jemsek, Dr. Burrascano and other top Lyme literate physicians IDSA continually ignores all requests to address chronic Lyme and LBC in its treatment guidelines.
I too have suffered immeasurable losses..personal and financial. There are times when my own mother wouldn’t acknowledge my multiple disabilities and deficits. I’ve learned to say” if they are not part of the solution they are part of the problem”. To me this means simply that others either see and accept my limitations..if they don’t I tell them to get lost! It works!!!!
I’m 50 years old and have been significantly disabled since my late 20s. Today I toured a retirement facility and looked with envy at active 80 year olds, knowing that I’ll never be able to be as physically active as them. Hiking? Not a chance. My son was born with gestational Lyme, caught from me in utero but not diagnosed until puberty. He was born with brain damage and encephalopathy. As he gets older and falls further behind his peers, it burns like acid that his life has been restricted from birth from an infection that the medical establishment denies existso.
5 years of treatment have improved my executive functioning, but I’ve got a body that’s prematurely aged. 50 on the outside, 70 within.
Ticks and Lyme both suck.
Every story sounds the same. Years of doctors missing the cause of our suffering. Now the claim of 300,000 contracting lyme every year. In ten years that will be close to ten percent of the US population. If only the people we turn to for help could live a year in our skins. Ten years is a long time to be sick. Ten years is a long time to hope for a change. My story is only ten years old but it is no longer possible to remember my life any other way. One thing I have no read in any other post, since lyme came to control my body even my dreams are in pain
My daughter lyme coinfections. She has been under treatment for over seven yrs. She iS completing detox and getting immune system working again. There has been a huge change in how she feels. Her sleep improved cognition better. Think this is the way. Otherwise so much money spent on wasted treatments.
I had Lyme Disease for 12+ years as does our daughter. I completed my treatment in 2012. There is a clinic in Denver: diet changes, I.e., eliminate sugar, and I did weekly ion cleanses at my chiropractor’s. To date, I have muscle aches when I eat sugar but that’s it. Don’t give up.
For Sharon who asked above about a Dallas center, I think it’s the Environmental Health Center, http://www.ehcd.com, with Dr William Rea, director. They specialize in detoxing and rebuilding health.
I’m glad this survey got done. People have no idea what it’s like to live with Lyme/co-infections until it happens to them. I was met with so much disbelief during my long sojourn with fibromyalgia because it was all invisible and nonunderstandable. It made me stronger as a person to have to survive something unknown. I attended large and small fibromyalgia support groups, before the advent of computers, and I thought we were all polluted!
For me, it’s not an average of 19 days a month of not functioning so well – it’s 24/7, as in other people can make plans in life, but I have 24/7 physical limitations that others cannot even fathom that restrict physical movement, physical exposure in environments, etc.
I just feel like we’re living on a different planet. It’s practically like sci fi – unseen, different planet. Now finally becoming more recognized, yet still confusing to others due to all the myriad variations of symptoms.
Please read the free ebook on this website. This therapy or miracle will help you so much… I have Lyme along w/ other things. This is curing me. I’ve taken it for 4 years on and off. Knowing that I would be even better if I would do it more often. MMS.org or Miracle Mineral Solution.org I’m starting hollistic medicine school and am encouraging everybody to use this. Please Please check this out…
I spoke with a friend who tried MMS and has an acid reflux burning response. Any reports of this discomfort.
En Miami, casi desconocida o desautualizados los infectologos, dicen que no es zona endemic. Tengo un test WB positive desde 2009 y los sintomas y no encuentro un especializado dr en Lyme. despues de consultar 9 infectologos de la ciudad. Tengo 71 anos.
This was so interesting. I have had lymes since 2010 and have spells where I lost body functions and cannot hardly crawl. Had blood tested in Calif. and came back positive after having 5 attacks in 2010. Have a Dr now who gets me my meds. It has been reoccurring in the last 6 months. I hate this disease and I live in the woods. Not smart.
Attention all Lymies——Biological Factoid! The Bb cannot .. will not survive under a constant barrage of hyperbaric oxygen. Why don’t your doctors tell you this? I have been treating it for years quite successfully . My fee? Whatever they can afford. They keep thinking $$$$$. chrispentell@yahoo.com Chgo. area
Every time, I read a Lyme disease article … I get so depressed. I’m reminded of it everyday though ~ waking up to seeing double & ears ringing for the past few years. Before that, my knees were so swollen, I could barely get out of bed. But I won’t give up trying to get in remission….. mine led to a pretty bad case of breast cancer, so it became a bigger battle. I have learned the hard way about what works, what doesn’t.
Sometimes, when I’m out in nature & the wind is blowing so strong through me… my eyes look so much better (I got cross-eyed by this disease, or what one calls “esotropia”, where one eye has a tendency to go inward.) I began improving with long-term antibiotics, but needed major surgery, so I’m back to where I started months ago. It could take up to a year to see normal again, acc. to my doctors.
I won’t give up…. I love to learn & I always try anything out… if I can afford it. If I had more money in the pocket, I probably would go all out & go bananas~
Seems like no matter what you do though, it takes a long time to recover or get out of a chronic stage. It took a good year & half before my painful arthritis all went all away. I was on strong antibiotics & took daily Epsom Salt baths… & got a dog to push me hard to go out there walking. Now, our walks have been cut short until he heals from his surgery (tore his ACL).
Whoever’s truly responsible for the biowarfare biting vectors out in public should be the same party responsible for people’s healing. I don’t understand why make it so much harder on people’s suffering…. Well, I am very happy, though, that we can publicly all express ourselves here & there. That’s how I learn & slowly get better or I hope~ also, through my dreams at night… They have literally saved me.
So many of your stories bring tears to my eyes, having first seeing patients as a family nurse practitioner who were dealing with these horrific infections. In most cases, I saw the whole family, and families of those with Lyme and co-infections have always appeared lost, angry, scared, would rather believe Lyme can’t exist because it would be too horrible…..
Then, about 5 years ago, I very suddenly had to stop working…I was diagnosed with lyme and full blown positive WB tests and bulls eye infections, but I sure got it good….though treated 3 times…usually only for 1 to 3 weeks….No one knew much about the co-infections then. Lyme was enough to try to decipher and believe. So suddenly, after many stressful years of immune type issues and unusual infections, my body gave in, and 1 of my exam rooms became my nap room so I could see patients between my frequent naps. Then the being driven home because of fainting, horrific pain, shortness of breath, you name it. Thank God I had nurses working with me who could treat me. The practice had to fold if I was to get better. I couldn’t believe the position I was now in….daily fevers, horrible joint pains, decreased vision and new lazy eye, severe numbness and dizziness. I was pretty much brought home then to be mostly on my couch or in my bed, with no income until after 3 years my disability was approved. My only job was to get me better, to continue caring for my beautiful son, now 12. I became very isolated from family and friends because of the devastation of how I felt- still can’t drive myself to my numerous appointments. My 3 tick borne infections had infected every organ in my body, including my brain and whole nervous system. I can never describe how scary it was, and still is at times, wondering if I’ll make it through each horrible transition of these diseases (I have at least the 3 B’s: ( Borrellia (Lyme), Babesia….horrendous shortness of breath!, and Bartonella, causing me unbelievable shin and feet pain and numbness, like thousands of needles being poked in my feet)…I did not think then that I would still be here now, and sometimes still don’t want to be. My quality of life changed so drastically and quickly that many know if it weren’t for my son, I don’t think I would have the strength to make it through this absolute hell which so many understandably cannot fathom. But there was no choice to go on, through “wholistic” and conventional treatments, all making you feel much worse before you start to feel better…but only for a little while…. My immune system is just shot. Currently I cannot rid myself of a bad staph (yes MRSA) infection.
The symptoms are hellish, but the hardest is how isolated I feel, after years of being a successful contributor to society through the work I loved. Family try to understand, but so many just can’t and don’t understand that I may not call because I cannot pick up the phone literally that day, not that I am avoiding anyone…..
I’ll stop there…I am finally well enough on some days to start blurting it out, not caring what people think, to help myself and others in this situation. These diseases are not going away, and families and individual’s lives are being torn apart daily. I don’t know where i will be in a year or 2 or past that, but I am trying to speak out more, (and leave my painful but safer cocoon at times) in order to get the word out more…to help all of us. Please help us and hear us. Thanks.
i AM SO SORRY FOR YOUR DIFFICULTIES. tHANKS FOR SHARING
God bless you. This is all new to me..hoping to connect with the right care givers….so far my acupuncturist has been my ROCK!
I was terminated from my job and had to fight with every ounce of energy I had, just to get approved for long-term disability. The insurance company continues to attempt to find ways in which to deny my claim. I also have Carpal Tunnel, which two LLMD’s are certain is a result of the Lyme, and probably the only reason my disability claim was finally approved, as it is so easy for medical doctors to deny the existence of chronic Lyme, even with positive IGeneX test results. For the few short weeks I’ve been able to rest over the past year, I started to feel somewhat better, but they don’t really care whether or not you get better, they just want to stop paying. It’s nothing short of criminal. I have found, as some people have mentioned here, that detox has been immensely helpful. Infrared sauna, diatomaceous earth, argentyn 23, tons of lemon water as tolerated, oil of oregano, and oil of cilantro have been (seemingly!) extremely effective for me in conjunction with the antibiotics and Mepron. Oh, and tons of protein. I take rice protein powder in smoothies cause I’m able to ingest the most that way. I hope everyone gets better, whatever that’s supposed to mean for any of us. I’m most grateful for my kids and very few close friends who have stuck this out with me, and I am also grateful for my sense of humor, but some days, I just don’t feel like talking to anyone or seeing anyone, and sometimes there is just nothing to laugh about.
Its great to finally after searching for almost two years in chronic pain, I have now put a face on my diesese.
Asking and crying over and over again in one Dr. after another only for them to never check for Lyme.
It has crippled my life where doing simple tasks are more then I can manage.
I see a ND now because I sought him out and here we are, I’m not crazy after all!
Barbara
I hate to say this. ….or maybe I dont…ALL of these arrogant doctors and the cdc that deny chronic lyme and coinfections need to contract every single tick borne infection out there as well as their families, be treated by their own ineffective protocol and then come back and tell us if three wks of abx was enough or that its in their freeking head!! What cones around goes around I always say!!! Oh and to the ones who deny lyme exists in their state when it does as well….will they ever learn after 40 yrs???
EXACTLY! I said the same thing too…they think this is a simple disease or that it doesn’t exist? Go ahead you slimy gutter snipes, go into a room full of ticks and bring your husbands/wives, kids, grandkids, mothers and fathers, sit down, be bitten and wait years before you get treatment…live with the symptoms you laugh about and say are in people’s heads…and then crawl back into the gutter where you came from. There is a special place in hell with your name on it…Lyme central…may you burn there forever.
Not only that, once they’ve treated you for anything else but Lymes, and the medical system comes to the conclusion that they’ve screwed up on every other diagnosis, they won’t touch you with a ten foot pole. I don’t know how long I’ll last either, I’m not debilitated yet, probably only been infected 4 long years now of really, really slowly onset of symptoms, but the pain, oh my, the pain in my chest. With the Buhner protocol, (only a month on that so far), and a three month course (nearing the end of that), of Ciften, I’m finally able to sleep through the night. My energy is not the best, I force myself to exercise and the like, but the constant pain, and continually being pushed over to psychiatry, I’ve got a case manager who pilots me through the medical system now, doctors hands are tied. I’m tired, 4 long years of doctors visits, bouncing back and forth to psychiatry along the way (it’s in your head). Suckered into having my perfectly healthy gallbladder out (no gallbladder problems run in the family), and oh my things just got worse after that, surgeon literally laughing all the way to the bank to make his boat payment or whatever. Doctors and ER MD’s yelling at me, yes yelling at me, this is how you get rid of the patient and keep them from coming back, or switch the PCP. Medical system corrupt, poisoned by pharma drugs that do indeed kill. I’ll give the buhner protocol, and my super strict diet a little longer, but man, this disease totally makes you feel like your done with this world, it really, really does. I don’t know how much longer I’ll hold on either, I’ve already wrapped up all my directives, will, etc. Yes, lol, the cannabis helps, it really helps me .. get away so to speak, the right strain will help with pain as well.
My story begins in 1993 when I was pregnant with my only child, I have suffered two miscarriages. That I was told may be related to this disease. And this child was born with a heart defect that required open heart surgery. But anyway to get to the real story this start with very bad headaches, that also came with joint & leg pain. But due to being pregnant they said it was associated with pregnancy. After that I started suffer with choric back & leg pain, swelling of the joints, choric headaches. After 5 years of many misdiagnoses I ended up in the hospital with co infections it was then they realized after test showed I was positive for Lyme Disease. They gave me antibiotics orally, 4 weeks. And told me I was cured and all the sickness would go away with the treatment…. Not I continued to decline, in & out of hospital many times told it was this or that. But that facts remain between 1993 and 1998 before I was tested it got worst and worst, and I had no idea when I might have contracted this disease. Between 1998 an 2001 I was treated oral once and with IV antibiotics three times, then having to have a pacemaker implanted in 2001 due to this disease.. Never even being told this could happen I was in shock, pain and just wanted my life back. Nothing was working.. So things continued to decline and in 2005 I started having massive grand mal seizures out of nowhere they started.
At this point in my life I am disabled due to the many issues I deal with on a daily basis, still 20 years and 12 different treatments I suffer was choric pain, choric headaches, swelling of the joints, seizures, heart condition, nerve damage, many infections, kidney stones regularly and more recently some memory loss. And added to the problem is I have built resistance to the antibiotics, so even just treating UTI can be problem for Doctors. I am turning 40 this year and have lived half my life battling this disease.
I’m 46, a mother of 4. Bitten in 2005. Test positive at every relapse. I live in the Lyme capital if the world.
My story …
I’m tired of trying to feel better. So I just lay here in constant pain realizing this is as good as it gets, which is a much bigger pill to swallow then these useless meds I take.
So what do you say when all hope is gone?
I look forward to never remembering how awesome I was.
I have my daughter back but at a costly price. 11 yrs ago at the age of 15 she started getting so sick. Flu like symptoms, heart arrythmia, hair loss, rash on legs and arm, swollen joints, pin and needle sensation etc etc. 2 yrs ago it went to her brain, yelling, screaming, flooding rooms, burning popcorn at 4am etc.
Lyme disease with bartonella but it took so long for physicians to diagnosis. Today she is slowly recovering, no longer needs a wheelchair, her mind is repairing itself. She is like an innocent child that doesn’t remember alot of what had happened last year or early this year when she shoved me to the floor and I almost broke my hip.Lyme disease caused her to have anxiety, OCD and schizophrenia but with the proper antibiotics and other meds she is my daughter and I never gave up on her. ticktoc.me
Sounds similar to our story. May I ask, has her hair returned and also that is the least of important issues once this gets going. I ask anyway, and I apologize. May I also ask where you live and what things helped? Thank you !
I am looking for a lyme literate physician in the buffalo-rochester, ny area for my mother. Can anyone help me with this. Many thanks.
Karen Fishkin
I have spent 43 years with Lyme disease and absolutely NO help for MD’s or the health insurance. Now I am finding some help outside the medical realm. The problem is it is all too expensive for someone with only social security income. Is there any help financially for Lyme suffers who are without financial means? I need help to pay for treatments. I am very frustrated and doing my best with what I can do. It appears those with Lyme disease need multiples of therapies, help.
I have been using glycans, real food supplements, etc. and they do help a lot, just not enough because additional treatments are needed. Anyone interested in glycans which supports and immune system. This helps to stop or reduce the many co-infections I get. Anyone interested in this is welcome to contact me.
Have Lyme since 1987. At that time I found numerous other Lyme patients and a hand full of doctors who had knowledge of what this infection could do as well as how chronic in nature it could become. It was and is a crime that doctors refuse to hear our scream or learn from their peers We do know more today. Clearly not enough. Yet our medical community is as resistant as this horrific bacteria. We must move forward if we r ever going to all be well. I thank God for the tireless work of this org and others. I am now on disability. Would never in a million years thought I would fold. Don’t think for one minute I received disability for Lyme Borreliosis I received it for the severe neurological problems it has caused. As frustrated and saddened I am for myself (hard not to be when the pain is unrelenting) I am most broken for my family who have suffered huge losses on account of my being sick. I’m left remembering Dr. S.’s smug smile telling me to not listen to Lyme patients and that in 2 to 3 weeks this would all be behind me. Again, that was in 1987
Watching “Under Our Skin” has become a rite of passage to be in my life. If they don’t get it they are just going to run me into the ground with the “encouragement” they offer. I will just be a disappointment to them.
Taking three weeks to return a phone call just doesn’t seem reasonable to most people, lol.