Chronic Lyme disease: How often is it diagnosed and treated?
This article, posted today on PhysOrg.com, addresses the debate amongst physicians regarding the existence of Chronic Lyme Disease (CL).
The existence of chronic Lyme disease is an issue of sharp debate within the medical community. Some health care workers who call themselves “Lyme literate” insist that chronic Lyme disease is frequently diagnosed and treated by primary care physicians. Others, however, including the American Academy of Pediatrics and the Infectious Diseases Society of America, state that there is no convincing biological evidence that chronic Lyme disease exists.
Many doctors are concerned with the potential dangers associated with the prolonged and intensive use of oral and intravenous antibiotics (the recommended treatment for chronic Lyme disease), such as blood clots and life threatening infections. A study soon to be published in The Journal of Pediatrics attempts to determine how often chronic Lyme disease is actually being diagnosed and treated.
Contrary to the assertions of the “Lyme literate” community, Dr. Feder does not believe intravenous antibiotic treatment is common practice. “The 6 physicians in our study who treated patients with chronic Lyme disease do not fit into the ‘Lyme literate’ group,” he explains, “because they treated their patients for an average of 20 weeks—not months to years—and it does not appear that intravenous therapy was used.” According to Dr. Feder, “Physicians who diagnose patients with chronic Lyme disease, and put these patients in harm’s way with months to years of potentially dangerous antibiotics, are outliers.” These findings call into question the claims of “Lyme literate” advocacy groups, like ILADS, that chronic Lyme disease is frequently diagnosed and treated by many primary care physicians.
The article emphasizes the dangers of over prescribing antibiotics suggesting that the patient MAY develop blood clots or life threatening infections. It is offensive to me that a physician would decide for everyone that blood clots are more problematic than being tortured with CL for years.
For forty years, I never complained about my health, or broken bones, or any ailment. Even while infected with Lyme Disease (LD), I trained and ran four marathons and several other races.
I am an extreme LD case. At my worst, my symptoms were so bad I was desperate to die. And for any physician to say taking antibiotics is not the better solution because it may cause blood clots or life threatening infections is ludicrous. Essentially, I had no other outlet; I wanted to die. Thanks to my ten years of treatment, things are now tolerable.
How do people put their faith in these illogical and un-knowing self appointed experts?
I have one friend with CL whereby a highly regarded Boston hospital recommended brain surgery over Lyme treatment. Shortly afterwards, at the Danbury hospital, he became so bad that he was given his last rights. Fortunately for him, his wife dragged him out of the hospital to seek proper Lyme treatment. Today, he is productive and near-perfect health.
I’ve seen people die a slow and tortuous death from LD beause treatment was denied by their physicians. I don’t believe these people would have been concerned about any antibiotic side effects.
It may not be the right treatment for everyone, but for many, antibiotics are the more promising, dignified and only path for CL sufferers. And any physician who says otherwise is suspect.
Stay strong and stay optimistic,
Rob
For the full article: http://www.physorg.com/news202619100.html
Lyme Handbook 
I am so glad I found this site . So sorry that you also suffer. I have been sick for along time and tested igm positive (CDC CRITERIA) 1-2010 state health dept contacted my md . I have been on several antibiotics and at times seem worse, fever,heel pain, strange rashes , bells palsy, irregular heart rate, visual problems , muscle weakness and latest issue lesions on my gums…sent to mayo clinic and was told I didn’t have lyme disease, not classis fibromyalgia but a secondary syndrome related to my hysterectomy and stress with child going away to college. I am so afraid and don’t know where to turn…
Kathy,
I’m so sorry you are struggling.
As you probably know, when the antibiotics are opening up the cysts, your symptoms should worsen (herxing). This is generally a good thing because it allows the spirochetes to expose themselves to the antibiotics.
Over my nine years of IV antibiotics, many symptoms improved while other problems worsened. The antibiotics destroyed my immune system and caused peripheral neuropathy (i.e. I can no longer walk).
Since I felt like I had gotten as much benefit from antibiotics that I could get, I went cold turkey and started seeing Maggie in Woodbury, CT. She practiced medicine for 20 years in the Soviet Union though she is not licensed to practice in the states. Instead, she has successfully treated severe Lyme patients with medicinal massages and immune building teas. She’s quite a legend around here.
When I started treatment, I was very skeptical, but it has helped everyone I know that goes to her. All of my symptoms have cleared up and I am learning to walk once again.
For those who can’t make it to her, I believe focusing on rebuilding one’s own immune system is paramount. The immune system is quite complex but certainly key in regaining one’s life back.
Rob
Thanks for your response. I guess what is so upsetting is that I am a nurse and have taken care of patients as long as I can remember anything from a scratch to cancer, scheduled testing and made appt for people to get the help to make them better and feel like I am so alone…How could so many people be suffering in this country and nothing be done?? I was told I was lucky that my first test was positive- really?…I guess the more I read the more confused I get. What would happen if people with cancer were denied use of their insurance for treatmen? I’m sure it would be all over the news. (by the way my husbands ins prem went up 40.00 more a week last week) I guess it would be nice if I could find someone to tell me exactly what to do get better.
I am 43 happily married with a great family. We live to be outdoors together. I love to hunt,fish and work in my yard. Lately my days are filled with powernaps while trying to work fulltime. What I’m trying to get at is I am so tired of saying I don’t feel good. I realize that this isn’t going to be easy but I am ready to do what ever it takes.
I hope I’m not overloading you , you are the first person I have talked to who could relate. Did I mention to you that this would be alot easier If I had my old brain?? lol..
One more quick question, Why if my westernblot was pos igm and I was contacted by the health dept am I being told by neurologist and mayo clinic I don’t think you have lyme?? My lab was sent to labcorp , when someone has 445 total cholesterol should we say I don’t believe you have high cholesterol and not treat them??
Kathy,
If you detected LD early, you have a much greater chance of beating it. So in a sense, you may be lucky. But, you sound like your symptoms are quite extreme so you may have had it longer than you think.
Also, getting a positive Lyme test result is essential for having the insurance companies pay your claims. Many that I know have had difficulties getting their claims paid because their Lyme tests were negative. So again, you are luckier than you think/feel.
Most Lymies love nature and have a high probability of contracting the disease. Although I have been crippled from this disease for 10 years, I would have never changed my love for the outdoors and adventure.
Lyme tests generally test for the 3 strains of the bacteria that are recognized by the CDC as Lyme. There are actually over 300 strains of Lyme known today. Yet, insurance companies, the IDSA and evidently the Mayo clinic are playing games with us all. Hence the ongoing political debate about LD. Sounds like there is a lot of money involved here. As they continue to play their games, many of us have to suffer.
I do wish the Lyme information were more available and honest 20 years ago. I could have recognized Lyme symptoms, been treated earlier and maybe had an easier time combating it. And this is why I am sharing my knowledge and education with others.
A tick in time, saves Lyme
All the best,
Rob
thank you again for taking time for me, I’m sure you have alot of people reach out to you. I know that you are correct in that my test results are a confirmation, I am just angry and hurt that with a + test result I am still being told you don’t have lyme?? I told the neurologist I didn’t want to have lyme and asked if he didn’t think it was lyme to please find out what was wrong with me. He was very rude to me and told me that I would be better off if I had never been tested. Looking back at all of my history I think it was around 2001 when I started having problems. Unexplained pain in R ribcage, fevers that would last for a few days, rash on r hand that has appeared in the same spot every year, r pupil dilating etc. so…probably been sick for awhile?
After surgery last year I had what I thought were problems after surgery and my life hasn’t been the same..pain in r leg, r arm headaches, pain in my eyes, stiff neck, thought I was having a mental breakdown and just couldn’t handle little aches and pains I had always had. The worse problem was my mind, felt like I was studdering, couldn’t get words out,everything I wrote down I questioned, couldn’t add etc. By fall most of those symptoms seemed better but every couple of weeks I would run a fever around 100-101 and my heels would ache just felt run down.
hands ached and felt weak in my muscles. Finally in Jan. one of the doctors in the office said right down every symptom you have and he ran several test and lyme was + I have been on flagyl, zithromax,10 days of IV rocephin (had serum sickness and had to stop) have taken almost 30 days of doxycyline 100mg 2x day. I am better at times, but when I feel bad I have tingling in my hands and feet and feel overall weak in my upperbody, at times my face still draws, heart palpitations and temp around 100. Was hoping to get some advice at the mayo clinic, but…
What about you Rob? what is your story? Any advice or suggestions would be greatly appreciated. Most of all I thank you for your time.. YOU ARE A BLESSING
Kathy,
I know a number of people whose stories mimic yours, including mine. I too tested positive and my neurologist DEMANDED that I did not have LD. He lectured on and on, putting me on the defensive. My education and experience probably surpasses his though it is a different field (i.e. Math and Computer Science). But it does not take a genius to question why he has hundreds of MS patients in a county of one million. The odds of getting MS is two in a million. He should only have a max of two MS patients if the two actually went to him.
When I went to him, both my legs were completely numb. I could not feel needles stabbed into them. After six months of IV antibiotics, the feeling came completely back with the exception of my toes. Even with this success, he continued to be in denial. At this point, I gave up on him.
As you know, I spent years on IV. Most things cleared up, but my walking went completely dead.
I am now rebuilding my immune system and having great progress. I can stand as of last week, and have been riding a stationary bike for the past month. If I do walk again, I am going to start a Lyme Clinic providing the services this Soviet doctor provides. Hopefully, I’ll be able to reach out to more people in need.
Keeping my fingers crossed,
Rob
Commentary: https://lymehandbook.com/2010/04/13/commentary-in-the-lyme-light/
A little about me: https://lymehandbook.com/index/about/995-share/
I have been very ill for six years but things got bad after I had my baby year half ago I have been to many drs I have been over medicated on antidepressants anxiety thyroid med finally I demanded to be tested for Lyme all three test came out positive but drs telling me it can’t be Lyme disease because I live in Pocatello so I made an appointment to go to Utah unless you would be willing to see me that would be nice Iam a single mom of four I don’t want to be away from them please Iam so desperate to be better
Danielle,
I am so sorry that you are going through this nightmare. I hear very similar stories often.
Let’s begin with the obvious, LD is now found THROUGHOUT the world including Pocatello. Birds are transporting infected ticks rapidly. Areas with many small animals enable the ticks to breed readily and spread the disease.
Currently, Lyme tests are inconclusive. But, when the tests are negative, many doctors argue that you absolutely don’t have LD . When the tests are positive, the same doctors argue that you can’t have LD. This is disingenuous and unprofessional.
In the doctor’s defense, most people have some ailments that can be mistaken for LD so it is probably frustrating for them. REGARDLESS, if the patient does have LD and it is not treated, it can become chronic. So then, it is more prudent to treat for LD then to dismiss it.
When a person’s immune system is strong, they generally can combat the disease for some time without experiencing symptoms. As the disease festers, their immune system weakens and the disease exacerbates. More symptoms will surface.
Also, during pregnancy, the mother’s immune system MAY experience weakness resulting in a similar response. PLEASE BE AWARE that LD can be transmitted via the placental or through breast feeding.
GREAT! So now what?
Finding a Lyme Literate Doctor is a must. Most likely, they will put you on a cocktail of antibiotics. This affects many things (e.g., immune system, gall bladder, etc.). But from experience, chronic LD is MUCH worse and crippling.
There are natural routes you can take, but they seem to be effective on select people and mostly a gamble.
IT’S IMPORTANT TO REMEMBER that the CDC and the AMA were completely wrong about AIDS in those early days. They demanded that it only affected homosexual men. Hmm!
Rob
Thanks so much for your reply I know I have chronic Lyme it’s been six years I tryed getting my children tested just to be yelled at and told that I don’t have ld I don’t now who to turn to I gave birth to two children while I have been sick
I thought you were a dr down here in Pocatello sorry
I tryed making an appointment with you but you guys don’t except Medicaid would you ba willing to make an exception I would really like to be seen by you I have an appointment may 9 to go to Utah I would much rather see dr here in Pocatello please Iam begging you thanks again Danielle Dille my home 208)233-2119
No one will treat me here in Pocatello