NEWS: California doctor describes own struggle with late-stage Lyme disease
"I have a dog in this hunt. I used to be the healthiest guy I knew."
From the Willits News (Willits is in northern California):
Lyme disease: One man’s story
When Lyme disease exploded in New England over 30 years ago, it was unknown in our neck of the woods, but things have changed. A confluence of climate and land use changes, coupled with animal and insect migrations, has produced a tick population in north county hills that carry not only Borrelia borgderferi, which causes Lyme disease, but half dozen or so germs that often co-infect people and contribute to the extreme difficulty in attempts to cure the Lyme disease.
If you don’t have the disease and don’t know anyone who does, you will, sooner or later.
In this overview, I will only be referring to late-stage, or chronic Lyme disease complex rather than acute Lyme disease, which can usually be cured with weeks to months of oral antibiotics.
When people get the ‘bull’s-eye’ rash following a tick bite, they have a reason to be medically evaluated and treated. Simple. But what happens if someone gets a tick bite and has no initial symptoms? It’s not a pretty picture; life and well-being can be destroyed, effective treatment can be hard or impossible to obtain, treatment and evaluation can be extremely expensive, and sufferers might discover the medical association that creates guidelines for treatment of infectious diseases denies they have a treatable infectious disease. Instead they may be told they have psychological issues.
It’s a real mess out there, and though there are rays of sun peeking through the fog, getting well can be elusive for those who have been ill for years. And there are a lot of us.
I have a dog in this hunt. I used to be the healthiest guy I knew. I took good care of myself, ate wisely, maintained athletic conditioning all my adult life, and cherished what I thought were longevity genes.
In retrospect, I was probably bitten by an infected tick in the late 1980s when I lived on Sherwood Road in woods crawling with ticks. I had no rash or other symptoms at the time, but by the beginning of the 1990s, I had developed some ‘weird’ symptoms involving my heart and inner ear function. These seemed to pass with time and some medication, though with no antibiotics and no consideration I might have Lyme.
Then in 2000, I developed severe inner ear symptoms, which ear, nose and throat specialists could not specifically diagnose. That waned, and by the end of 2005 I was back to heavy workouts and jogging at age 59.
By spring 2006, I was unable to stand for the first several hours of the day without holding on to a walking stick. I’d become totally debilitated with back pain, and hadn’t a clue why. Several months into this misery, I happened upon an old colleague who—when I told him that “aging sucks”—suggested I had Lyme disease. I replied, “No way!” Not me.
But it was true. And now, 3½ years later, I still struggle with what became far worse than I could ever imagine.
The Lyme disease bacterium loves nerves and cardiac tissue. Brain, nerves, and blood vessels, muscle, and joints become home to this infection. But the symptoms any one person develops are a function of many factors including individual genetics and the role of co-infections.
Late stage Lyme disease can look like anything from nagging aches and pains to devastating brain and life
-threatening heart syndromes. It’s not only a cause of massive suffering for those with the disease, it’s virtually impossible for most doctors to diagnose and treat. The reasons for this will be discussed in another article.
AUTHOR: Jon Sterngold is a Willits, CA, resident and physician.
Read part two of the series here.
Read part three of the series here.
Reprinted by permission from the Willits News.
ic late stage lyme disease. I just thought it important to mention that IF (and that’s a big if because many never even realize they’ve been bitten) you find a deer tick embedded anywhere on your body, remove with sharp tweezers. Pull the tick gently and get as close to the skin as possibly. Don’t squeeze the body of the tick. What you want to avoid is leaving the head under the skin.
DO NOT WAIT to see your doctor. It’s extremely important that you receive treatment of 30 days of doxicycline immediately. Do NOT let anyone tell you to must wait to see if a rash appears before treatment. As much as 60% of those bitten do not even get a rash. Not getting a rash does NOT mean you haven’t been infected. Don’t misconstrue that fact by believing that you then must wait for other symptoms before treatment. There are too many variables with regard to symptoms. Some do not experience symptoms for years; the symptoms may come and go so they’re easily dismissed. They may also be dismissed because they’re subtle or so obscure that they’re shrugged off as “nothing.” Don’t compare yourself to your co-worker who may have recently had an experience with lyme disease. Lyme disease effects everyone differently which is one of the variables I previously mentioned.
My point is if and when you or a loved one discovers an embedded deer tick on any part of the body it’s all that’s necessary to immediately seek treatment which should be NO LESS than 30 days of antibiotics. Doxicycline is what’s recommended at this stage. If your usual primary care doctor refuses to do so, find another doctor who will treat you. Of course taking antibiotics when it’s not necessary is not something you want to do, however, you have no way of knowing whether it’s unnecessary which in itself makes it necessary. You don’t want to find out five years later when you can’t walk or talk (After 13 years I still have a problem with concentration and focus and often have a difficult time communicating. It’s called “lyme brain” and I wouldn’t wish it on my worst enemy.)
The author of this article is not exaggerating when he describes the difficulties with late stage lyme disease. Actually, he just touches on the problems. As if dealing with this disease ravaging your body isn’t enough, it’s an absolute nightmare dealing with the doctors, insurance companies, labs, etc. I honestly felt like I was in an episode of The Twilight Zone (and actually still do feel that way, it’s just become “my normal”). I am not a conspiracy theorist, well I should say I didn’t used to be one. I got involved with the lyme disease community (I didn’t have a choice) and we saw doctor after doctor who stood up and treated the disease the way it needs to be treated be singled out and attacked by the powers that be and several actually stripped of the medical license. It’s not urban legend. I spoke to the doctors. I know many of the doctors personally. I was treated by one of the doctors. He was the only one who found a way to treat me with IV antibiotics which is basically the only chance many of us have. It helped me considerably, however, this was eleven years ago and lyme disease has taken over my body again. It becomes impossible to actually “cure.” The spirochetes hide in deep tissue to avoid being knocked out by any treatment.
I am different in every way since being stricken with late stage lyme disease. Both inside and outside. It will turn your life upside down and inside out and twist into something unrecognizable. You may think that I must be exaggerating. How I wish that were true. Like this author, I have just touched on some of the problems. I could write a book. Most would think I’m lying but there are others like me who unfortunately know I’m not.
I got infected in Santa Rosa, Ca 1971, got the bull’s eye rash etc. Three months later I developed Bell’s Palsy on the left side of my face for a month or so. Six months later I awoke one day and all joints, esp. back were out of place. I panicked and knew I could not live like this. A friend took me to a chiropractor who knew what he was doing and realigned my back three times per week for many years. That really helped with pain. My neck was so stiff I could not even move it. I needed pain meds full time which were extremely hard to get. So I moved down to Southern CA whee thankfully I got a good doctor who prescribed Darvons. Also muscle relaxers. I went to Kaiser and had a work up by their best doctor who finally said “You have some kind of a virus but I don’t know what it is.” Kaiser prescribed physical therapy which turned out to only be “posture instruction.” Didn’t do me any good. Thank God for the doctor who wrote me the meds. Then I was diagnosed with a heart condition when I went to a doctor after a car crash. This turned out to be Lyme related. Extra heart beats. I was given heart medication that made me sick and dizzy. Finally I went on a workout campaign three times a week which began by walking long distances. My joints were killing me from the work outs but I got stronger and was able to have greater movement. After a workout I would come home and collapse into a dead sleep. This seemed to help for ten plus years as I was able to only take aspirin and oil pills for the joint pain. After getting older and other changes I was unable to work out to that degree and am back on pain meds and muscle relaxers and still sleep most days. Get up at night for a few hours active and go back to sleep. But I try to get out of the house. This Lyme disease has wrecked my physical life. I still managed to get a M.A. degree and owned my own business thirty years but only because I did not have to show up to work every day. I did work every day for seven years during the period when I was working out because I was stronger. I was lucky to be able to do that. Still have the disease and still suffer constant joint pain and fevers, ear aches and swollen lymph glands. My neck is still killing me and is as stiff as can be. Be careful with massage. I picked up an ear infection from a massage therapist. I still have this infection after ten years. My immune system does not kick in as well as other’s because of this Lyme disease. My stomach is so messed up I could not even contemplate taking any more antibiotics. By the way I never had a Lyme disease test that was positive after three failed but I know I have the disease. Several others I know who hiked in Northern CA when I did have been infected as well.
I have been batling something for nearly a yr now. 3 yrs ago I was competing in 10ks and such. now walking at a walmart is a challenge. have seen many neuros and only been told it’s anxiety and ptsd. but i am the least anxious person i know. i can no longer write draw type fast or accuratly-which led me o loose my job. i have no strnegth in my right side. or feeling. and i am right handed. to say i am frustrated is saying little. no one is helping. no on e cares. i feel like i have been lft to die
You need to get a Lyme test. Your symptoms seem very familiar.
Scary situation Martha, I tested negative on the Nova Scotia Lyme Test, accuracy is always the big question. My symptoms are hip joint osteoarthritis ( which resulted in a replacement last year. Doctor has me scheduled for the other side this year. Putting on the new dryer hose was a nasty deal this morning.
I spent a season ( in the Southern USA ) and I think I remember a bull eye rash on my arm for a couple of days. Then I got into a work related auto accident which likely is why I’m such a dumb blonde guy now. Anyway WHATEVER !!!
What to do now, First thing is “I CARE MARTHA” things I can do to protect me and my family which you may want to consider.
1) There is a book called “Healing Lyme” by Stephan Harrod Buhner that suggests some interesting holistic medication.
2) Shampooing and bathing with some oils from “doTERRA”.
3) Getting yourself a Chantecler mother hen and chicks for your yard, I have had these out all last summer and they a terrific job eating the insects that come around the place.
Hope you get back to me Martha, I’m on the emailer at r.macinnis@yahoo.com
When I was 21 (am now 58) I went camping. Several days later, got a rash and a host of other symptoms. parents took me to doctor, found a rate antibody in blood, referred to MCV Hospital in Richmond, VA. Spend a week there going through testing. Lyme disease was mentioned but so was Lupus. Came away without a definitive answer. After a year of doctors and hospitals, I gave up and lived with the symptoms. Now 37 years later and a large part of my life with debilitating unexplained health problems from fatigue to numbness in feet and hands, headaches, digestive problems, bladder problems, unable to sleep, diagnosed with Fibromyalgia 7 years ago, I have now developed a very disturbing symptom – uncontrollable jerking of the arms, legs, head, first only at night and now during the day. I am not sure if the test for lyme can be performed accurately for someone like me but I sure would like to know if this has caused me a lifetime of misery.
Totally relate. Your story helped me to stop feeling like I’m only one like this. Very isolating disease even if you’re around others.
l have lymes and I got a tick bite at a Fl state park after camping in our travel trailor feeding deer apples and playing with our Boston terriers.
I am 58 years old and this is the worst thing that has ever happen to me. The CDC prod ocal is draconian and actually useless.The
government does not want to treat Lymes disease , let them die and give them another diagnosis. Email me ifor you wish I will never give up or settle for less in life . Look forward to hearing from you , Elizabeth
Lyme disease is the worst enemy. It’s hell on earth. I don’t know why doctors don’t know how to treat it .
I met a doctor once for a med assisting class. He was treating Lyme patients with an infrared heat bed. The theory was to heat up the body internally to a temp where the spirochettes could no longer survive. Any one know if this really works or just another gimmick?
totally relate
this must become recognized. or give us compassionate death option like we do to animals.
i use infrared heating pad.
it doesn’t work but it is great for immune system and calming the autonomic nervous system to heal but is not a cure. it doesn’t heat high enough to kill.
I have been struggling with Lyme for several years .. Neuro Lyme and heart are the worst .I can deal with pain and stiffness .. but I hate when I get full body tremors vertigo and heart palps .Ive been in and out of the hospital and have developed extreme weakness in my legs ..mostly going down the stairs not going up… My legs will shake and if Im carrying anything with weight its so much worse . Some days I can barely get out of bed . I can have good days too, but never what I was before the Lyme. I went through several tests and I only tested positive on 2 bands of the Western blot 41igg and 23igg..The CDC requires I believe at least 7 to be a positive test so all the doctors Ive gone to say it isnt Lyme.. I live in CT and have been bitten several times by deer ticks SERIOUSLY one time I took the actual tick in to be tested and they said they dont do that anymore ..WHY ??? I even had a rash and tested negative according to their guidelines .. I say something is wrong seriously wrong why is this disease so taboo ? I was on oral antibiotics for 2 years it seemed to pull me through the worst part in the beginning but now I have chronic Lyme ..Lyme changed me it changed me physically and mentally Im tired of fighting to be treated and not told its all in my head ..They claim I had MS fibro you name it but not Lyme when every single symptom leads to Lyme.. Why is that? I find stress triggers my flares and try to avoid it as much as possible but who can avoid stress completely .. One of the hardest things with this disease is you find out who your real friends are very quickly .. Most will think you are making it up ..Maybe to be lazy or for attention .. even family members will react this way .. Lyme will kill me Im sure of it ..I have heart issues they cant figure out what is going on ..pvc’s etc A few times now I have had a sudden death feeling .Like my heart just stops everything goes black and I feel myself passing out .. I cant explain it any other way then what I just did ..ITS REAL and its scary and Im afraid it may happen again and that will be it .. One time I went and the doctor actually said maybe its the Lyme and put me on IV abx. for 5 hours in the hospital and sent me home .. By the time I got to the house I could barely walk I felt like my entire body was dieing everything felt like it was shutting down..I knew I was herxing so I crawled to the bathroom and drew a bath with epsom salts to help detox from the die off ..But I wasnt getting better just worse I almost had to call my son up from downstairs to help me from the bath !!! I crawled from the tub flopped on the floor and grabbed a towel and laid there for a couple hours before I could crawl to bed .. Then it took about 3 weeks to be able to semi function as a human again .. This is my life this is a Lymies life … We suffer self treat and endure so much no one understands and most dont care ..
Julianna i have so many of your symptoms and have been struggling with this “unknown” illness that no doctor ive visited can diagnose anything for the last year, lyme tests and all other tests come back negative. Sometimes i can just be sitting watching tv or making food and it feels like my heart just stops for a second, it scares me so much that i just stop to make sure im still even breathing. My hands and feet and random spots on my legs and arms will go numb, i have had tinnitus for the last 2 months and have been seeing strange colorful visual effects and white flashes of light, there is a constant visual “fog” that basically looks like a tv set to a static channel but many colors instead of black and white. im always so weak and tired and just feel like an old man now instead of a 23 yr old, it cost me my job and i dont think i can perform certain job funtions anymore but nobody helps or even cares, its like they think im lying or its psychosomatic or something and it upsets me that more isnt being done about this disease.. I will get more lyme tests and my doc is gonna try antibiotics. Im also taking multivitamins and b vitamins and vitamin c those seem to help a bit
Dakotah, recommend you be evaluated by an ILADS-affiliated doctor. If you can’t afford treatment, you may be eligible for financial assistance from the Lymelight Foundation. For Lyme testing, see the LymeTAP program. Links to these and other resources here: https://www.lymedisease.org/quick-lyme-intro/
Julianna, felt like I was reading my own Lyme bio when I read your comments. Been sick since at least age 10, now age 52. I remember thinking as a child is this extreme fatigue normal? Had headaches stomach issues too since early on. I used to be a tomboy and play in the woods age 7 to 10(early 70s), likely contracted it then. My mom used to burn the ticks out of my hair. This is before they even knew about it. Live in WI and Lymes and coinfections have been around ALOT longer that they recognize and not just in Lyme CT. Also feel like death. Things got way worse after I hit full menopause. Maybe the female hormones were keeping the Lymes and coinfections in check. It’s now invaded my brain and CNS, I can feel it. My bowels, kidneys and liver don’t work right. I have the 100 other symptoms that come with this disease. Detoxing myself, along with some acupuncture and a few select proprietary herbal blends and have had mucus coming out both ends for 8 months now. I am really really sick, and noone will listen(except some alternative providers). Western medicine never finds anything, tested negative 3 times. If you have chronic, won’t show up anyways at least within CDC guidelines. I just read the CDC info on “Post Treatment Lymes Disease” and it made me mad.
Been on the doctor merry go around once again, 3rd or 4th time. Sure I’ve seen 20 to 30 doctors over the years. Now they won’t treat “Chronic Fatigue” so I am blackballed from the big healthcare facilities in Madison, WI. UW used to be the best around, but they just don’t aren’t leading researchers anymore. Infectious Disease Specialists are a JOKE too, don’t even waste time with them. What happened to the hippocratic oath? Been on all their useless medications that don’t help anything, might mask symptoms for a short time. I’ve been cut off pain meds(don’t even want them anymore either, after coming off Methadone takes at least a month!), Wake up out of sleep in severe pain, maybe get 3 to 4 hours. You know the drill.
You are right no one believes us, and the few that do can’t help you. I’m moving to CA full-time in Nov. At least assisted suicides are legal now. This is NO way to live. It robs your joy and happiness, it isn’t even existing. I went to the FAMED Mayo Clinic twice 30 years ago. Told me my white blood cells were low, and I was depressed and sent me on my way. Have tried a special chiropractic clinic, under the Fibromyalgia diagnosis and an Integrative Clinic(Lyme Literate) for a year on their supplements, herbs, antibiotics, compounded hormones, special diet, etc which did NOTHING. I’ve spent well over 100k over the years, but didn’t feel so bad when I read some comments on a blog about a couple that lost over a MILLION dollars, very successful, lost their great business, house, lost everything to this insidious disease. But who cares about the money anyways, Lymes and coinfections just wreck your life all around.
This is not living. I’ve been on disability for 10 years. My grandfather always said “If you don’t have your health, you don’t have anything”. It is SO true.
Sorry for the rant, my shoulders are killing me. It’s so helpful to connect with others who are also suffering, cause then we know we are not alone in this struggle. We just had to suffer in silence b4 the internet and all the info we now have at our fingertips.
Researching coffee enemas and liver flushes now, may be the way to go along with the acupuncture and herbs. I am so inflammed internally, but the GI Specialist couldn’t find anything wrong? These doctors only see what they believe, not believe what they see. I am also doing Diatomaceous Earth and have had better results with that than many things I’ve tried over the years.
I’m sorry to say, but it’s profits over people. There is no money to be made by treating Lymes and coinfections. Antibiotics don’t work if not caught early enough and given 30 days worth. They have nothing.
Has anyone on here tried a fasting protocol prior to antiobiotic therapy?
April 2016 my 32 yr lyme 1984 first treated 5 yrs later 89 hosp intravenous got well then relapsed =hell on earth ,today i have gotten lymes 12 times babs once bartenella 2012,all here my minnesota ranch center of minn,hundreds of neighbors too 20 deaths,my horse dog cat too,26th yr as lyme advocate ,my training in med school nutrition since 1977 has been a great help yet no i am not 100% well at the best 90% treated 3 yrs u of mn orals antibios 199! =relapses my llmd injections of 2.4 million bi cillan 4 months one day per week since 93 on has been the best relief kills spiros brain etc,i have orals ready for relapses…bottom line all the vit herbs ,healthy living etc allways relapses.,it takes many different things to get better.Chaplain Geof steiner Cushing mn.
An interesting read. Thanks for the info. Sharing.
Hello. I have a friend with a strange undiagnosed illness that seems to be autoimmune . It started since he was very young and apparently was due to sleeping in a mite filled matress, but since he changed it he has not get better. He suffers chronic fatigue, pain in al the body and several other strange symotoms that could never be defined as one particular disease, although he got tested for everything at the time. Any orientation would be highly appreciated. Sorry about me english !
Thank you for this wonderful article. I acquired Lyme disease in Eastern pa at the age of 13 in 1978. It was the summer of hell that never ended. I was an avid fisher, hunter, hiker, and pulled more ticks than I can count. I had the bullseye rash, fevers, and went on to develop all kinds of problems. At the time we thought it was a just a spider bite and never attributed it to a tick bite or the disease. I was never treated back then as most Doctors thought of Lyme at the time as a form of hysteria that only was in Connecticut. I was confirmed to have it by blood test iin1995. I also developed behcets disease which I was told may have been triggered by the long term Lyme infection. It is a form of hell that has impacted every aspect of my life. It is like having a horrible case of flu that never ends. You never have a sense of physical well being again. Just some tolerable moments of time. I have never told my family physician or others. Just the specialist at the time that I went to knew. When I Asked Rheumatologist Once What His Thoughts Were About The disease As He Himself Said He Thought It Was A Form Of hysteria. That did it for me and I kept it a secret from my medical history. And the opinions on how to treat, how to diagnose, what it is or isnt, are all over the map. Criteria for treatment and medicines are different from doctor to doctor.
Just wondering if you were diagnosed clinivally or through blood tests. Is it more difficult to detect in blood after so long?