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, 31/2 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.
ABOUT THE AUTHOR: Jon Sterngold is a Willits resident and physician.
Posts: 571 | From Massachusetts | Registered: Oct 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Good article.
Thanks for posting it.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
Well-written, easy to read. I'm sorry for this doctor's suffering.
I hope he can also reach out to his physician colleagues. Sometimes it just needs to be stated simply, as in yes, this can happen to you and yours, it happened to me, kind of thing.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Thanks for posting this. Think of how many others have found the same fate and have no clue.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
bettyg
Unregistered
posted
4 comments so far and i added mine .....
Jon, Welcome to our Lyme disease and/or co-infection club; free, and unlimited membership! It's an EEO; no one is exempt from getting this debilitating disease.
Thank you so much for your wonderfully written article on how you discovered you had Lyme disease.
This Christmas marks 40 years chronic Lyme for me! Misdiagnosed for 34.5 years by 40-50 medical drs. here NEVER mentioning once the possibility of Lyme.
I thought I had early onset Alzheimer's disease since my sister-in-law died at age 40; yes, 40 of this mind-robbing disease she had for 8-14 years. She was treated for severe depression the entire time.
I had all the symptoms she was going through. Now I realize she probably was bitten by a tick/s and have Lyme and co-infections too since my brother/she helped my Dad farm the land for 10 years before she died. She walked the beans; picked up rocks; harvested the crops; and mowed the large acreage of grass on a regular basis.
Mayo Clinic, Minn. determined after 4 month autopsy it was early onset AD! But I'm sure they never looked for the possibility of Lyme!
I never saw a tick embedded nor did I have a bulls-eye rash which would have lead me to the conclusion of Lyme! It was sub-zero Iowa weather, so I wasn't outside doing activities and I wasn't a gardner then. My roommates and I didn't have pets, and all the regular ways of being bitten were eliminated.
Using my journal I started at age 13, I arrived at the fact, it had to be a tick off my folk's CUT Christmas tree that got me since I got so sick within 1-2 wks. after being to their home. We always had LIVE xmas trees until the last of us 5 graduated and left home.
There's 1 lyme list with 150 symptoms/diagnosis; I have 100 of them.
Thanks, guys. It was most challenging to keep these in a word count for the paper. So much to say, so little space...
jon
-------------------- ret ER MD (25yrs), lyme 19yr DX 6/06, guitarslinger www.LifePathGuide.com Posts: 28 | From Willits, California | Registered: Sep 2006
| IP: Logged |
bettyg
Unregistered
posted
here's jon's 2nd article broken up here ...
wow, jon; i didn't know you were a member here!! surprises ... surprises !!
Living with Lyme: Bacterium can 'cloak' itself
By Dr. Jon Sterngold/Special for The Willits News
Posted: 09/30/2009 11:35:49 AM PDT
Click photo to enlarge�1�
The bacterial cause of Lyme disease is called Borrelia burgdorferi, named after researcher Willy Burgdorfer, Ph.D, who first identified the germ in 1982.
The spirochete, a corkscrew-shaped bacterium, is unique in the known bacterial realm because of the quantity of DNA it carries that enables it to evade detection and attack the human immune system.
It can change its outer protein coat, cloaking itself from immune detection.
It also can completely change form, becoming a treatment-resistant cyst, or shed its outer coat to enter our own cells to set up shop.
The success of antibiotic therapy generally depends on the activity level of a bacterium; how fast it grows and how often it reproduces.
Most common bacterial diseases we encounter in medicine are from bugs that reproduce in less than 24 hours.
When antibiotics "hit" the reproductive or active metabolic machinery of these germs, they die.
This is why when we treat common illnesses such as pneumonia or urinary infections, people usually get better in a few days.
The Lyme bacterium, however, has a reproduction cycle as short as a day but as long as about nine months.
During a phase of prolonged inactivity, it is very hard to kill. This is one of the reasons an established Lyme infection can be hard to eliminate.
It also is thought and there is real data to support this that the Lyme bacterium eventually takes up residence with other co-infecting bacteria, in what is called a biofilm community.
On a microscopic level, the bacteria clump together in a gel-like secretion where they are insulated from our immune system and circulating antibiotics or antibodies.
This is their bunker, from which they can wreak havoc by releasing the neurotoxic products of their metabolic life.
It's an evolutionary match: they thrive in a body they modify to suit their needs.
They can suppress our immune systems and alter other vital processes, making us ill, helping them thrive.
They don't tend to kill us, though they sometimes do. It's a parasitic existence.
In addition to symptoms that stem from inflammation of the brain, nerves, heart, blood vessels, joints, and connective tissue which the Lyme bacteria cause through multiple mechanisms, we also know the disease can induce another class of illness called autoimmune disease.
Maladies such lupus, multiple sclerosis and Lou Gehrig's disease (ALS) can actually be caused by Lyme disease.
These diseases are not considered to be curable, but there are many cases in which the autoimmune disease resolves completely when the Lyme disease has been treated always with long-term, high-dose antibiotics.
Tests to determine whether someone has Lyme disease are problematic.
The common tests measure levels of antibodies we produce that are specific to the Lyme bacteria.
But, if the bacteria can hide, change form, immunologically "cloak" itself, and suppress our ability to make antibodies, a person quite ill with Lyme can have totally negative tests.
What commonly occurs is that after a year or so of antibiotic use which can render some of the bacteria into fragments the immune system can recognize the tests turn positive.
The dilemma is that when someone is looking for a diagnosis, an answer to profound suffering, a physician who relies on initial test results may call it wrong, and the patient will have no answer and no effective treatment.
This is part of what defines the difference between "Lyme-literate" MDs, who understand the problems with testing and treatment challenges, verses nonLyme-literate physicians who, for some very compelling reasons, can't or won't manage this disease.
The range and depth of this problem is immense, and will be discussed in the next article.
ABOUT THE AUTHOR: Jon Sterngold is a Willits resident and physician.
Copyright � 2008 - The Willits News
************
another good article!
*************************
jon, here's another link about your articles in activism:
The Lyme bacterium, however, has a reproduction cycle as short as a day but as long as about nine months.
Yes, a good article! I hope the doctor is feeling better from treatment.
My question is about Bb reproduction time. I have read that it reproduces in 12-24 hours. I have read that it reproduces in a month's time. And now here a statement about a nine-month duration.
And we're not even talking about cysts which turn back into spirochetes when conditions are more amenable.
So what's the deal with these various time durations, if anyone could explain this? Thx.
Posts: 2784 | From San Francisco | Registered: May 2006 | IP: Logged | *******************
AliG Frequent Contributor (1K+ posts) Member # 9734 posted 01-10-2009 10:11 PM
Perhaps he IS talking about the cyst form when he says 9 months.???
Both of these articles are excellent. Thanks for posting this! ------------------- Posts: 4659 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged | ************************
bettyg Honored Contributor (25K+ posts) Member # 6147 posted 02-10-2009 12:02 AM
posted
Welcome Jon, and thanks for writing such a great article.
I had Lyme over 25 years before diagnosis, so I am definitely in the "challenged" group.
Don't know if I'll ever beat it, but I do hope to beat it into retreat.
Time will tell. Looking forward to reading more from you!
Keeping you in prayer.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
| IP: Logged |
posted
Reproduction time - I was quoting my lyme doc, a heavy hitter in the realm. I don't know, perhaps he was referring to cyst conversion. I'll have to re-ask him. I know that Burrascano and Horowitz talk about 4 week repro cycles. You don't need many outliers to start a new family 6-9mos down the road though...
And hey, I could be wrong. He could be wrong. It's not like the science of all this stuff is nailed down, right? I quoted an expert in the field, that's all I know. We should all be skeptics here, no? Really.
Part 3 came out today, but I don't know if it's web linked yet. And that's it unless they ask me to write any more. I'd love to, but it's a tiny paper and generally cluttered with, ahhem... sports stuff.... and small town chit chat.
btw, the pics in the newspaper article are their additions. I had nothing to do with them and don't look like any of them
jon
-------------------- ret ER MD (25yrs), lyme 19yr DX 6/06, guitarslinger www.LifePathGuide.com Posts: 28 | From Willits, California | Registered: Sep 2006
| IP: Logged |
i'm sorry you are so sick...but i am glad you are on our team. you write very well...and you're a well educated voice that we can always use.
keep up the good work...and get well soon.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
| IP: Logged |
bettyg
Unregistered
posted
here is jon's part 3 of 3 from link above and breaking up for us neuros to read/comprehend ... betty
Living with Lyme: Long, often debilitating treatment flouts IDSA 'guidelines'
By Jon Sterngold, MD
Posted: 10/02/2009 12:55:13 PM PDT
It is difficult enough for someone suffering debilitating symptoms due to late-stage Lyme disease to get well with the judicious, but adequate, use of long-term antibiotics. Almost no one gets better without these.
To deny patients access this care is a travesty. But this happens all the time and patients often travel hundreds to thousands of miles to see one of the small numbers of Lyme experts in this country.
How can that be?
Doctors are taught to practice medicine that conforms to "guidelines," thought to be consistent with the best approaches to disease based on what is known about the disease and effects of treatment.
These guidelines are usually produced by the professional and academic organizations that represent specialty knowledge in medicine.
Guidelines for evaluation and treatment of Lyme disease are issued by the Infectious Disease Society of America, or IDSA.
The guidelines have been created by a small number of 'experts' in the IDSA, and there are a few punch lines to their conclusions.
One is that the disease is hard to catch and easy to treat.
Another is that anyone with Lyme disease who has persistent symptoms after a several-week course of treatment with antibiotics no longer has Lyme disease and should not be treated with more antibiotics since this just increases risk of untoward side effects and produces no clinical improvement.
They conclude many sufferers of neurologic and psychological symptoms from late-stage Lyme disease are simply deluded or depressed and should be referred for psychiatric evaluation.
Because the IDSA guidelines have been embraced by medical boards in most states, physicians risk losing their license to practice if they do not follow the guidelines.
This is the primary reason why effective care is limited.
The few physicians who have braved threats to their licenses and actually taken on the challenge of getting Lyme sufferers well have found most patients can be helped, if not made well, by the careful use of long-term antibiotics.
Many have found it often takes one to three years of antibiotics for these patients to turn the corner.
It is now understood why that is, but this has not yet changed the position of the IDSA guideline creators.
We also know the same folks who issue these guidelines have huge conflicts of interests in this realm.
One has ownership of the Lyme bacterial DNA, several have financial relationships with insurance companies that do not want to foot the bill for this expensive care, one or more have a stake in a new Lyme vaccine, and all of them have professional and economic liability if and when proven wrong.
It is the experience of scores of physicians treating many tens of thousands of Lyme sufferers over the last 25 years that they are, indeed, dead wrong.
There is an increasingly massive pile of literature that supports the science and clinical management of late Lyme, flying in the face of the "guidelines."
And in the past year, the IDSA has been legally challenged by the Connecticut Attorney General for creating guidelines in a manner both ethically and scientifically flawed.
This affords some hope for the future.
Another pressing reason why most doctors do not want to treat late Lyme disease is that it is a phenomenally difficult thing to do.
Testing is deeply flawed and expensive.
Response to treatment is slow and peppered with setbacks. Treatment is expensive and patients often suffer horrendous debilitating symptoms.
As a prior ER doctor who liked to sew up wounds and send repaired folks home, I know it would take a very special demeanor to rise to this challenge.
I don't think I'd want to manage a case as complicated as my own.
In these articles, I've shared a minuscule and space-limited fraction of what I learned during the past three and one-half years of living with late Lyme disease, as a patient and as a physician. There is so much more.
ABOUT THE AUTHOR: John Sterngold is a Willits resident and physician.
Copyright � 2008 - The Willits News
**********************
comments
M deLisser Surrey, Canada |#1 ** 5 hrs ago
Thank you Dr Sterngold, and the Willits News, for another article which explains to other physicians the difficulties of treating Chronic LD and why the need for good LLMDs to handle these cases.
Any MDs suspecting Lyme disease should refer their patient immediately to a LLMD unless they have the time and interest to learn how to handle the case themselves.
Thank you to Willits Newspaper and Dr. Jon Sterngold for your wonderful 3 part series on Lyme disease.
You are a very gifted writer and were able to get the points across on the lyme war controversy.
As Jon pointed out above, the IDSA, infectious drs., guidelines are the ones used and accepted by the CDC, Center for Disease Control, and our US military also use IDSA drs; NOT our chronic lyme literate mds who treat antibiotics long-term!
Since CDC uses the IDSA guidelines, almost all insurance companies DENY us reimbursement for lyme dr. appointments, labs, treatments especially the IV antibiotics, meds, etc.
We therefore are stuck paying out of pocket for our Lyme treatment due to this lyme war we knew nothing about until we were correctly diagnosed.
We have 2 lyme bills in congress, over 10.5 yrs, HR 1179 and S 1352.
The medical community gave over $505,000 lobbyist money last year to NJ's Sub-committee Chair Frank Pallone.
Guess what? We can't get this sub-committee to put our lyme bill on their agenda to DISCUSS openly! The politicians have been bought off!! The IDSA does NOT want our lyme bills discussed openly on the sub-committee floor.
Meanwhile we Lyme/co-infection patients are losing: our jobs, health insurance, spouses who take custody of our kids, our homes, bankruptcy, family/friends, and the ultimate sacrifice:
commiting SUICIDE since we are in so much pain and have lost everything!
Is this right? NO WAY! We just want to be treated like cancer and HIV/AIDS patients where the insurance companies pay THEIR FAIR SHARE!
posted
here is jon's part 3 of 3 from link above and breaking up for us neuros to read/comprehend ... betty
Living with Lyme: Long, often debilitating treatment flouts IDSA 'guidelines'
By Jon Sterngold, MD
Posted: 10/02/2009 12:55:13 PM PDT
It is difficult enough for someone suffering debilitating symptoms due to late-stage Lyme disease to get well with the judicious, but adequate, use of long-term antibiotics. Almost no one gets better without these.
To deny patients access this care is a travesty. But this happens all the time and patients often travel hundreds to thousands of miles to see one of the small numbers of Lyme experts in this country.
How can that be?
Doctors are taught to practice medicine that conforms to "guidelines," thought to be consistent with the best approaches to disease based on what is known about the disease and effects of treatment.
These guidelines are usually produced by the professional and academic organizations that represent specialty knowledge in medicine.
Guidelines for evaluation and treatment of Lyme disease are issued by the Infectious Disease Society of America, or IDSA.
The guidelines have been created by a small number of 'experts' in the IDSA, and there are a few punch lines to their conclusions.
One is that the disease is hard to catch and easy to treat.
Another is that anyone with Lyme disease who has persistent symptoms after a several-week course of treatment with antibiotics no longer has Lyme disease and should not be treated with more antibiotics since this just increases risk of untoward side effects and produces no clinical improvement.
They conclude many sufferers of neurologic and psychological symptoms from late-stage Lyme disease are simply deluded or depressed and should be referred for psychiatric evaluation.
Because the IDSA guidelines have been embraced by medical boards in most states, physicians risk losing their license to practice if they do not follow the guidelines.
This is the primary reason why effective care is limited.
The few physicians who have braved threats to their licenses and actually taken on the challenge of getting Lyme sufferers well have found most patients can be helped, if not made well, by the careful use of long-term antibiotics.
Many have found it often takes one to three years of antibiotics for these patients to turn the corner.
It is now understood why that is, but this has not yet changed the position of the IDSA guideline creators.
We also know the same folks who issue these guidelines have huge conflicts of interests in this realm.
One has ownership of the Lyme bacterial DNA, several have financial relationships with insurance companies that do not want to foot the bill for this expensive care, one or more have a stake in a new Lyme vaccine, and all of them have professional and economic liability if and when proven wrong.
It is the experience of scores of physicians treating many tens of thousands of Lyme sufferers over the last 25 years that they are, indeed, dead wrong.
There is an increasingly massive pile of literature that supports the science and clinical management of late Lyme, flying in the face of the "guidelines."
And in the past year, the IDSA has been legally challenged by the Connecticut Attorney General for creating guidelines in a manner both ethically and scientifically flawed.
This affords some hope for the future.
Another pressing reason why most doctors do not want to treat late Lyme disease is that it is a phenomenally difficult thing to do.
Testing is deeply flawed and expensive.
Response to treatment is slow and peppered with setbacks. Treatment is expensive and patients often suffer horrendous debilitating symptoms.
As a prior ER doctor who liked to sew up wounds and send repaired folks home, I know it would take a very special demeanor to rise to this challenge.
I don't think I'd want to manage a case as complicated as my own.
In these articles, I've shared a minuscule and space-limited fraction of what I learned during the past three and one-half years of living with late Lyme disease, as a patient and as a physician. There is so much more.
ABOUT THE AUTHOR: John Sterngold is a Willits resident and physician.
Copyright � 2008 - The Willits News
**********************
comments
M deLisser Surrey, Canada |#1 ** 5 hrs ago
Thank you Dr Sterngold, and the Willits News, for another article which explains to other physicians the difficulties of treating Chronic LD and why the need for good LLMDs to handle these cases.
Any MDs suspecting Lyme disease should refer their patient immediately to a LLMD unless they have the time and interest to learn how to handle the case themselves.
*************
bettyg Honored Contributor (25K+ posts) Member # 6147 posted 03-10-2009 12:58 AM
my comment just left:
Thank you to Willits Newspaper and Dr. Jon Sterngold for your wonderful 3 part series on Lyme disease.
You are a very gifted writer and were able to get the points across on the lyme war controversy.
As Jon pointed out above, the IDSA, infectious drs., guidelines are the ones used and accepted by the CDC, Center for Disease Control, and our US military also use IDSA drs; NOT our chronic lyme literate mds who treat antibiotics long-term!
Since CDC uses the IDSA guidelines, almost all insurance companies DENY us reimbursement for lyme dr. appointments, labs, treatments especially the IV antibiotics, meds, etc.
We therefore are stuck paying out of pocket for our Lyme treatment due to this lyme war we knew nothing about until we were correctly diagnosed.
We have 2 lyme bills in congress, over 10.5 yrs, HR 1179 and S 1352.
The medical community gave over $505,000 lobbyist money last year to NJ's Sub-committee Chair Frank Pallone.
Guess what? We can't get this sub-committee to put our lyme bill on their agenda to DISCUSS openly! The politicians have been bought off!! The IDSA does NOT want our lyme bills discussed openly on the sub-committee floor.
Meanwhile we Lyme/co-infection patients are losing: our jobs, health insurance, spouses who take custody of our kids, our homes, bankruptcy, family/friends, and the ultimate sacrifice:
commiting SUICIDE since we are in so much pain and have lost everything!
Is this right? NO WAY! We just want to be treated like cancer and HIV/AIDS patients where the insurance companies pay THEIR FAIR SHARE!
My Dr. said that the doctor who got a grant for a study on the effects of "Long Term" antibiotic therapy on Lyme ran the study for one or two months, can't remember which, and concluded that long term antibiotic therapy didn't work.
What an imbicile to think that a month or two was long term treatment. All he can really say is that two months isn't enough.
Totally illogical, yet this is what we are dealing with.
Blessings on you for all you are doing for the cause.
Keeping you in prayer.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 22dreams, and BettyG.
Thanks for posting the whole article as the link no longer has that article accessible. This is what comes up:
Thank you for visiting The Willits News . We are sorry the article that you requested is no longer available. Please search for this article in our archive search. --
But, from another thread, this appears to be link that works:
posted
The newspaper editor told me that part 4 should be printed this week. Maybe today? Haven't seen the paper yet and I don't know how far behind the online version runs. Stay tuned. I've written 5 parts to date.
jon
-------------------- ret ER MD (25yrs), lyme 19yr DX 6/06, guitarslinger www.LifePathGuide.com Posts: 28 | From Willits, California | Registered: Sep 2006
| IP: Logged |
bettyg
Unregistered
posted
hi jon,
looking forward to reading the next 2 articles you've written, and thanks for the heads-up! hugs
IP: Logged |
posted
Bravo, bluesdoc! You are really helping everyone - your community, Lyme patients and doctors.
Would like to add that a Lyme patient sprayed his land in Mendocino with TKO Orange and reported no more ticks.
TKO Orange (www.TKOOrange.com), also sold as Orange Guard in healthfood stores and hardware stores, comes from oranges.
It's an essential oil, specifically the d'limonene compound in the orange skin that deters bugs. It's nontoxic to us, biodegradable, deters and kills bugs.
If you get the TKO Orange concentrate, put a couple drops in a spray bottle and fill up with water. Spray on clothing, in home if needed, yard, camping area, camping gear.
The TKO Orange folks said it can also be lightly sprayed or misted on indoor/outdoor dogs and cats, giving some extra protection.
It stings my skin so I don't put it on my skin.
It's important to also put something on the skin for tick repellent. Many use essential oils.
The Orange Guard is something like 1:6 ratio orange/water.
The product is also a great cleaner - takes out spots, smells.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Agent Orange for ticks! Thanks for the hot tip, Robin. I've lived in town now almost 20 yrs and will never again spend time that I don't have to in woods/fields or any likely tick hangout. Things change, huh...... But thanks for the 411 on TKO Orange!
jon
-------------------- ret ER MD (25yrs), lyme 19yr DX 6/06, guitarslinger www.LifePathGuide.com Posts: 28 | From Willits, California | Registered: Sep 2006
| IP: Logged |
The first time I saw the article, it was surrounding a travel ad for Cancun - I was going to ask you if there are LLMDs there, but then they switched the ad, so I guess we stay put...
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Jon, excellent articles and well written. Most of all, easy to understand.
Better health to you.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
| IP: Logged |
bettyg
Unregistered
posted
jon's part 4 below and broken up for neuros like me if needed ....
LIVING WITH LYME: A phenomenally complex disease
By Dr. Jon Sterngold/Special for The Willits News
Posted: 11/04/2009 01:56:27 PM PST
Click photo to enlarge�1�
What are the symptoms of late-stage Lyme disease complex? I use the term 'complex' because the spectrum of symptoms are most often caused by the Lyme germ, Borrelia burgdorferi, and other co-infecting pathogenic organisms the ticks carry and transmit.
With names such as Babesia, Bartonella, Mycoplasma, and Anaplasma, these pathogens can dramatically contribute to the degree of disease and complexity of diagnosis and treatment in infected individuals.
So, as the immune system loses control of these bugs, they spread and cause inflammation, as well as release toxic molecules that cause symptoms and injury to cells and organs.
With so many different possible combinations of infecting organisms and degrees of immune system compromise, the list of potential symptoms is very long.
While one person might just have waxing and waning joint pains, another could be totally disabled with neuropathies that interfere with the ability to walk or even to stand.
Some become blind from blood clots in the eyes and some are so fatigued that getting out of bed each day might not be possible.
Many are plagued with the dreaded "brain fog" and some develop what appear to be well-known psychiatric diseases, such as bipolar disorder and severe depression.
But, these patients need antibiotic treatment as much or more than anti-depressants and other psych meds.
Many patients develop severe pain syndromes involving the back and legs, though involvement can be anywhere in the body.
Some patients lose intellectual ability, hearing, the ability to sense heat from cold, and coordinated movements.
Most develop insomnia, and many get disabling pain in their feet.
Fevers, chills, sweats, dry cough, and body aches can make it seem that some sort of "chronic flu" is going on.
Lyme disease can cause life-threatening cardiac abnormalities. And the list goes on.
Some patients have only several symptoms and some have scores.
It is no wonder non-Lyme literate physicians either roll their eyes at the prospect of taking care of a Lyme patient or simply refuse to believe this constellation of symptoms is an active and treatable infectious disease.
It is so much easier to believe these patients have psychiatric disease ("it's all in your head"-type illness) or suffer the aches and pains of aging and a low pain threshold (whiners).
It makes the doctor's life so much easier. Just say no. And believe me, as I said before, I would not relish the notion of taking care of a patient with as complex a disease as my own.
And it's not even that simple. We now know that in addition to the major germ types listed above, there are dozens to hundreds of genetic variations of these organisms. This introduces a mind-boggling level of diagnostic complexity.
Physicians faced with a bad disease, and complex long-term, sometimes dangerous treatment, need as much diagnostic data as possible to justify a treatment plan.
But testing for these pathogens is almost a lost cause to date.
There are only a few tests for these bugs, and they miss most of the genetic variants. The tests are very meaningful and helpful when positive, but meaningless when negative.
We simply cannot "rule out" an infection with a negative test. Physicians who believe otherwise are wrong, if not downright negligent.
But wait, there's more!
It's not just the bugs that determine our illness. Our unique immune system genetics and dysfunction play a large part creating the spectrum of symptoms we develop.
It has been found that some genetic types tend to develop more severe disease than others, including subtypes that cannot get well.
Some are more prone to creating antibodies that make us ill by attacking our own tissue and some have impaired ability to break down and excrete bacterial toxins.
These are some of the reasons that one person's Lyme disease doesn't look another's and why we need Lyme experts to manage sick patients.
Lyme expertise will be discussed in a subsequent article.
ABOUT THE AUTHOR: Jon Sterngold, MD, is a Willits resident and physician
*******************
jon, well done and you hit it on the head each time with your statements above.
just a reminder to us all; FEEDBACK IS WELCOME at the site above!
let's give some reinforcement to the editor on how much we have all enjoyed jon's labor of lyme from a lyme heart.
IP: Logged |
bettyg
Unregistered
posted
i see there are 6 replies now online including mine i just posted:
Thank you to the editor for allowing these great, educational articles written by Dr. Jon Sterngold to be published by your newspaper! It is very much appreciated.
Jon gave you another accurate insite to what it is like to have Lyme and co-infection diseases he mentioned above. COMPLEX describes us to a T. Nothing is simple about these diseases.
Other areas that Jon didn't touch on, or perhaps my 40 yr. neuro lyme mind overlooked them, are extreme sensitivities to:
lights, glare, and reflection is like looking directly at the sun for me;
noise/sounds ... is like a base drum at FULL volume and I hear a pin drop too.
chemical smells ... perfume, cologne, aftershave, hairspray, office/cleaning products that smell, cigarettes & especially on a smoker's clothing that we can NOT be around whatsoever, diesel fumes, and some foods.
Again, thanks to the newspaper and to Jon for writing about Lyme and co-infections from his personal and medical experiences. hugs
IP: Logged |
posted
I am so impressed. Jon, thank you. Good can come from adversity, and you are living proof. God bless you.
Posts: 374 | From United States | Registered: Nov 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Jon,
Thank you very much for trying very hard to educate the community with your insightful articles.
Perhaps you will strike a cord with even one physician.
I would bet that many readers recognized their unexplained symptoms.
Have you been contacted by many local people wanting more information...suspecting that they may have lyme?
Here's hoping that you are able to publish many more articles to increase awareness.
All the best to you in your recovery.
Many thanks!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Jon,
I wish I had printed a copy of each article you wrote when they were still on the Willits News site.
Because they are easily understandable, yet cover some very important points regarding chronic lyme and coinfections, they would be great articles to save and offer to others for reading.
Is there anyway to see each article again without just printing this lymenet post?
In order to show the articles to others and have them look authentic, I was hoping you might have them saved somehow or posted elsewhere.
Hmmm....maybe you could start your own online blog...something like Lyme MD only from the patient's perspective...a patient who just happens to be a physician.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
Thanks, guys. I think what I'll do is put the articles up on my www.lifepathguide.com website. I have to get with my webmaster to make that happen. In the meantime, I'm happy to send them to anyone who wants them (including part 5, not yet printed). Fire me an email to jon AT lifepathguide DOT com.
Yeah, these have touched some chords for some folks who have contacted me. Frankly, I'm a bit surprised as there's nothing new here. Anyone drowning in this realm for long enough knows this stuff. I suppose perhaps it might be a coincidence of timing and bite size? When we want to educate those on our path, succinct is good. Attention spans being what they are these days....
jon
-------------------- ret ER MD (25yrs), lyme 19yr DX 6/06, guitarslinger www.LifePathGuide.com Posts: 28 | From Willits, California | Registered: Sep 2006
| IP: Logged |
posted
One more thing, Dekrator, as a closet writer, I find my brain constantly cranking out sentences, observations, vignettes, and adjectives that describe my story. I really do want to tell my whole story someday, but as anyone here who writes at all knows, it's damn hard work to do it right. I just don't have that level of focus yet. Hopefully that will come, coincident with wellness... These days, when I feel relatively well, I gravitate towards heading out to my music studio and wanking away on my guitar until the next wave of brain fog/buzz hits. It just helps me a lot. But if I ever get well, I will have to honor that state of relative grace with an effort that matches the profundity of a shot at rebirth. No small thing....
jon
-------------------- ret ER MD (25yrs), lyme 19yr DX 6/06, guitarslinger www.LifePathGuide.com Posts: 28 | From Willits, California | Registered: Sep 2006
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
jon,
I understand about the hard work that writing entails...like you said...maybe someday.
I emailed you.
Thanks!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
bettyg
Unregistered
posted
breaking up for neuros like me following jon's articles ... don't want to miss anyting important; smiling.
quote:Originally posted by bluesdoc:
One more thing, Dekrator, as a closet writer, I find my brain constantly cranking out sentences, observations, vignettes, and adjectives that describe my story.
I really do want to tell my whole story someday, but as anyone here who writes at all knows, it's damn hard work to do it right. I just don't have that level of focus yet.
Hopefully that will come, coincident with wellness... These days, when I feel relatively well, I gravitate towards heading out to my music studio and wanking away on my guitar until the next wave of brain fog/buzz hits. It just helps me a lot.
But if I ever get well, I will have to honor that state of relative grace with an effort that matches the profundity of a shot at rebirth. No small thing....
jon
well said; enjoy your guitar playing as your stress releaser. hugs
IP: Logged |
it is so hard to explain all that is going on with us Lymies...so many challenges we have to over come...
I appreciate your time and effort to post these for us too!
thank you!!
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
Thanks for the hot tip, Robin. I've lived in town now almost 20 yrs and will never again spend time that I don't have to in woods/fields or any likely tick hangout. Things change, huh...... But thanks for the 411 on TKO Orange! ![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[bow]](graemlins/bow.gif)
Printer-friendly view of this topic