Q: I have read that Lyme disease is highly treatable with antibiotics. I was diagnosed with Lyme disease three years ago, yet despite several rounds of antibiotics, I still suffer from muscle aches and fatigue on a daily basis. Why isn't the treatment helping me?
A: Without personally examining you or evaluating your medical records, I can only suspect one of two things: You have a stubborn case of Lyme disease that isn't responding to standard treatment; or, more likely, you don't have Lyme disease at all. Lyme disease and fibromyalgia are sometimes confused, even by doctors performing tests. Recent research has confirmed this fibromyalgia-lyme disease confusion.
As many as half of the people who believe they have Lyme disease – even those in whom Lyme was diagnosed by their doctors – probably don't have the disease. The reason for misdiagnosis, in large part, is that blood tests used to diagnose Lyme disease are prone to false positives. Relying on results of the blood test alone can lead you and your doctor to believe you have a disease that you really don't have.
In fact, in a 1993 study of 788 patients referred to a university Lyme disease clinic, researchers found that 452 – more than half – of those people did not have, and had probably never had, Lyme disease at all. Their diagnosis, instead, was fibromyalgia or a similar condition called chronic fatigue syndrome (CFS). An additional 156 patients, who had experienced Lyme disease in the past (which, in fact, might have been cured by the antibiotics), currently had fibromyalgia or CFS. Active Lyme disease was found in only 180 – or 23 percent – of the patients.
Because of the potential for misdiagnosis, most doctors rely on several factors in addition to blood tests to diagnose the disease. These include: the probability of exposure to disease-carrying ticks; your medical history; your symptoms; and physical examination results.
Lyme disease generally begins with a localized circular red rash where the bacterium from the infection-bearing tick enters the skin. Later symptoms, occurring after the infection has spread, can include joint pain and swelling, heart inflammation, and nerve involvement with associated muscle pain and fatigue.
Some of these symptoms are similar to those of other forms of arthritis and even to unrelated diseases. For example, muscle pain and fatigue are also common in fibromyalgia. Your physician should be knowledgeable about Lyme disease and know what criteria are necessary for its diagnosis.
Unlike Lyme disease, fibromyalgia, CFS and other related conditions cannot be cured with antibiotics. Consequently, if a person has both fibromyalgia and a positive blood test for Lyme disease, antibiotics will probably not relieve all of the symptoms. If there is reasonable doubt that you actually have Lyme disease or if you haven't had characteristic symptoms of Lyme disease other than the positive blood test, your doctor will probably choose not to prescribe antibiotics again.
If you actually have fibromyalgia or something similar, your treatment will differ significantly. Fibromyalgia can be managed effectively through a number of measures, including exercise to promote muscle conditioning, medications to promote deep sleep, relaxation techniques and maintaining a positive attitude.
Discuss your concerns and these various issues with your doctor. He should be able to help you sort out the actual cause of your pain and fatigue – be it Lyme disease or something different – and prescribe an effective treatment plan for you.
Doyt Conn, MD, Rheumatologist
As many before me have stated, the REAL research is out there and the Facts of this article are way off base...
How can you in good conscious be helping people by feeding them the lies that are so prevalent with this disease...which is often accompanied by multiple other infections...
The testing is SO poor at this time, millions are ill and are being fed this line of garbage, when IF the truth were told, people could actually be healed and be able to regain their lives...
Fibro is a SYNDROME...and one of THE BIGGEST and MOST COMMON Lyme symptom. That's FACT.
Additionally, Lyme will hinder the immune system so much that, many dormant viruses can reactivate. These viruses are HHV (Human Herpes Viruses) and ones like HHV6 when reactivated in adults will attack the Central Nervous System...Really makes the Fibro go Haywire...
Many of the people who have responded here have had NO CHOICE but to educate themselves better then MANY medical professionals...
Its time to drop the egos, its time to stop putting money in the pockets of those who benefit from lying about this disease...
And give people what they deserve...the right to be healthy and treated properly.
I have completely lost respect for this publication.
Blood tests show high counters of lyme disease still and my doctors say that is usual to show up for the rest of your life. They tried me on every drug there is to treat fibro with no success and are now saying it is all in my head.
I was told today 08/25/2011 to see a psychiatrist for depression and refused any further tests. Then they told me I am abusing drugs for wanting a narcotic therapy cause it is the only thing that helps. I don't know what else to do and am about to just give up all together.
I am now emotionally damaged from this treatment the past 6 years and am thinking about suing him for this.
25 years ago I was diagnosed with Lymes disease. Tick and bulls eye rash positive lymes titer and all. I had a negative reaction to the tick bacteria. Several years later I was told I had Fibromyalgia. I believe the lymes was the start of fibromalgia. My aging has only made the unending pain worse. I'm currently looking for answeres in the above mentioned book.
I used to be a Personal Trainer, Fitness Instructor, and walked @ 30 miles a week. Walking began to be a chore; working out became painful. I dreaded doing more than anything that required standing/sitting/laying for longer than 15 minutes. Finally tested for Lyme; positive....prescribed antibiotics since May 2009 (by 3 physicians), with few significant resuslts. I finally agreed to a PICC line... complications almost killed me. Then, came the Fibromyalgia diagnosis. Both Auto-Immune disorders related to Arthritis, Thyroid issues, prone to infections/co-infections. All resulting from Lyme. I haven't yet discovered a treatment that works for me; still battling the blood clot developed by the PICC line and severe allergic reactions to all previously prescribed medications.
Lyme is a nasty disease that compromises all the body sytems and triggers so many other things....
Any input?
As far as I'm concerned, we have so many diseases like MS, ALS, Fibromyalgia, CFS/ME because testing methods for determining infectious diseases are imperfect.
It's articles like this one that prevent me - someone who DOES have late stage Chronic Lyme Disease - from getting proper care and treatment (which I do respond to, eventually, and need to KEEP RECEIVING to prevent relapses) from medical doctors.
An important correction: in my first capitalized paragraph, it should read that I took 150mg clindamycin every SIX hours, not every four hours.
Responding to the first question asked in the article, I'd say probably the right abx wasn't found. There are lots of abx options. Or you could have coinfections that need to be treated also. Babesia can cause profound fatigue too.
To the doctor: how can a false positive test be proven? I understand the Hartford CT Lyme support group has offered 20K to whoever can prove someone doesn't have Lyme and so far there haven't been any takers.
How did the 1993 study show that people didn't have Lyme? And on what basis did the 180 patients show active infection? If they had positive tests, it still goes back to the issue that not everyone who has Lyme tests positive. I understand there are at least 27 reasons for seronegativity in those with Lyme.
Re probability of exposure to disease-carrying ticks, a bird can drop a tick anywhere. Animals anywhere can infect ticks.
Re the rash - only 20-30% with Lyme exposure get a bull's eye rash, meaning 70-80% do not.
So re the comment that people need to talk with their doctor, I'd say we need to talk with a doctor who understands the issues I've just discussed here: that any area can have an infected tick in it, the rash doesn't always occur, people don't always have initial symptoms, and people with Lyme don't always test positive.
Lyme-literate doctors (LLMDs) are usually affiliated with ILADS (www.ILADS.org - International Lyme and Associated Diseases Society).
www.lymenet.org can provide LLMD referrals in the Seeking a Doctor section.
Now about me. I had a fibro diagnosis for 23 years. I tried everything. If exercise, meds, relaxation and a positive attitude could have fixed fibro, it would have. Plus I tried many other kinds of approaches as well.
A nurse on the other side of the country clued me in online. After reading a list of my symptoms, she asked if I had ever been bitten by a tick.
Answer: yes, on my foot, 25 years earlier. A clinic took it out a week later, telling me it was a tick they removed.
By the way, only an adult female stays in the skin that long, feeding even up to 10 or 11 days. A nymph tick can feed and drop off. Thus, many people never see the tick that bit them.
The Lyme bacteria has also been found in 23 insects, and it can be transmitted via human fluids and tissues. Frankly, the blood supply needs to be screened for Lyme and coinfections.
I didn't have any symptoms for 10 weeks. Then I developed a stiff neck and sore shoulders. I thought it was due to my work.
15 months later, I developed head-to-toe pain that was declared by a rheumatologist to be fibrocitis. Later the term was changed to fibromyalgia. I met in fibro support groups for years; no one knew what caused it.
So when the nurse clued me in, I then tested four-band positive on the IgG Western blot test through the IGeneX lab in Palo Alto, CA.
I am allergic to most meds. I had clindamycin in my drawer from treating a recent finger infection. I decided to try the clinda since I didn't want to have to go through testing so many abx again to find one I wouldn't react to.
I put myself on the same regimen as I had been asked to do for the finger infection: 150mg every 6 hours. Only this time, I didn't do it for just 5 days; I kept going.
IN ONE WEEK, MY FIBROMYALGIA PAIN WENT TO ZERO ON 150MG CLINDAMYCIN EVERY FOUR HOURS. MY SWOLLEN JOINT PAIN REDUCED ABOUT 70-80%. MY CHEMICAL SENSITIVITY WENT DOWN A LITTLE, AND MY ENERGY WENT UP.
IN A MONTH'S TIME, I HERXED - IE, HAD A DIE-OFF CONSISTING OF PROFOUND FATIGUE, SO I DROPPED DOWN TO 150MG CLINDA 2X/DAY.
I HAVE STAYED AT THAT DOSAGE, THREE AND A HALF YEARS LATER. MY FIBRO PAIN IS STILL AT ZERO, AND CLINDAMYCIN STILL REDUCES JOINT SWELLING CONSIDERABLY.
IF I STOP TAKING IT, THE MUSCLE PAIN AND JOINT SWELLING WORSENS.
I capitalized these previous paragraphs because this news about successfully treating fibro pain with clindamycin antibiotics is, for me, and maybe for other fibro sufferers, extremely important information.
Through this successful treatment, I realized that my fibromyalgia condition, which developed after a known tick bite that I had no idea had passed me a disease I had never heard of, was actually a treatable bacterial condition called Lyme borreliosis.
I know that everyone is different and will respond differently to meds. If any of you try clindamycin and it doesn't work for you, I encourage you all to keep looking for treatment that will take down fibromyalgia, since my treatment example shows it can respond to abx - ie, I am treating a bacterial infection.
Also, please remember to take probiotics also when treating longterm with antibiotics.
Now, in response to posters:
Martha - your comments stand. And you are presenting a very important discussion about the Marshall protocol.
Lizzy - yes, I too want to encourage everyone to go to the www.idsociety.org site and watch the testimonies to understand the guidelines debate that's going on. 1600 pages of evidence for the existence of chronic Lyme was submitted by ILADS and other Lyme groups.
And bravo to Pam Weintraub for her award and excellent book, "Cure Unknown" - please read it if you haven't yet!
Gena - yes, Lyme disease causes fibromyalgia. The Lyme documentary, "Under Our Skin," includes footage of many Lyme sufferers saying fibromyalgia was a diagnosis they received before they found out they had Lyme.
And witness my progression - known tick bite, stiff neck and shoulders 10 weeks later, full-blown fibro 15 months later.
I also tried to find as many people as I could from my fibro days. The ones I found by then had found out they had Lyme and some had coinfections.
It sounds like you were reinfected. Symptoms can get worse with successive tick bites.
Lyme disease is an inflammatory condition that interferes with brain function, interrupts sleep, interrupts enzymes, interrupts hormones, inflames nerves, inflames soft tissues. Etc. The spiral borrelia bacteria attack nerves and soft tissue.
You need to get the Western blot test from IGeneX lab - www.IGeneX.com. Even then, only 60-70% test positive who have Lyme. Sometimes people test negative initially and then get a positive test after they've been treating - the immune system gets stronger, it has more bacteria to recognize, etc.
Please do a search for Marshall Protocol to see how over 700 world-wide sufferers are finally starting to become functional again.
I'm a registered occupational therapist - yet my struggle to regain my health still took much persistance. Go to Bacteriality.com to read interviews supporting Dr Trevor Marshall's protocol & read about his own reversal from being a teen diagnosed with sarcoidosis to a 60-something show is full of health, now!
Penecillins and cephlasporins both cause bacteria to convert into a form that goes undetected, and therefore - untreatable. It is not All-In-Your-Head. MP treats all auto immune disorders. It is not easy, but is the only way to truely heal. Yes, the bacteria is in-your-head, and hiding in the very cells that are designed to kill bacteria. This protocol is being implimented in China Hospitals (spring 2009) to treat patients.
If you know about Dr Lida Mattman's (former Proff at Wayne State Univ) bacterial findings - you will understand the science behind MP. Bacteria converts the same 'vitamin' D that all doctors are shoving down our throats. They only test the 25-D levels not the 1,25-D - which becomes dysregulated due to bacteria hijacking our immune systems to assist their survival.
Let's see if my comments get deleted...
Martha Wieber
New Canaan, CT
HUNDREDS of strains of the Lyme bacteria, Borrelia burgdorferi, have been found across the globe. The majority of these strains have only been identified through molecular testing and cannot even be cultured yet to determine if the are pathogenic. Maybe there are many strains that we don't even know about yet and don't have tests for, that are making people sick. Considering Fibromyalgia's symptoms and that there is no causative agent currenly known for it, how can one be so confident that some strain of unstudied borrelia isn't the root cause of Fibromyalgia?
With all the emerging scientific evidence, plus the fact that the Lyme bacteria has been found to have come from the Ice Age, we must realize that we're only beginning to scratch the surface of this. We don't want to throw the proverbial baby out with the bathwater.
The true fact is, the tests for Lyme disease miss more than 40% of patients who, indeed, have Lyme. (Last report I saw, tests MISSED 88 out of 200 positive cases.) Listen to the testimony of the highly-respected bench and clinical Lyme researcher, Dr. David Volkman, formally of the NIH...his presentation may be heard on the Infectious Disease Society's website right now. Listen and watch all of the people who presented worldwide, peer-reviewed scientific evidence that found Borrelia burgdorferi can, in some cases, indeed be chronic and that the tests are highly insensitive and miss many, many positive cases. And then, maybe throw in reading Pam Weintraub's book for good measure. It just won the American Medical Writer's Association award for Best book, 2009.
It's time to look at all the science, not just some of it. Patients are suffering and they deserve better.
Thoughts?
I am going for a second apinion and WILL get the western blot after 6 weeks have pasted from the day of the antiobiotics.
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