Imagine this: one night, you awaken from sleep feeling itchy all over. You scratch and scratch, eventually getting back to sleep. The next day, you feel like your skin is crawling. Your hair just doesn’t feel like your hair. A few days later, you see skin lesions on different parts of your body. You go to a dermatologist who looks at the lesions and prescribes a cortisone cream or thinks it might be scabies and prescribes an anti-scabies lotion. These don’t help.
Later, when you examine one especially itchy lesion with a magnifying glass, you see some sort of stuff coming out of your skin: red threads, yellow threads, black specks. You see and feel a sandy sensation in your bed.
Now you get worried.
You pull of a few threads and put them in a matchbox or a cellophane envelope and return to your dermatologist. He scrapes or biopsies a couple of areas and says “nothing, just normal skin” or “clothing fibers” and suggests a tranquilizer for your anxiety.
You go online and type “parasites under skin” and a bunch of repulsive skin conditions appear, but you were already checked for these. Then you retype your request as “threads coming out of skin” and start reading about Morgellons disease. When you finally reach the Wikipedia article, you know you’re in trouble.
Whoever wrote the wiki article (and based on the writing style, I suspect it was the people over at quackwatch.com) is pretty dim in the compassion and concern department. Basically it’s “Morgellons, eh? It’s all in your head!”
The Morgellons-Lyme-Bartonella link
Anyone who has suffered from a chronic condition with no positive test results (like fibromyalgia or chronic fatigue) has heard a doctor say “I don’t know what’s wrong with you, so you must be depressed.”
With Morgellons, you’re more likely to be called deluded. You think you see threads. Or maybe you’re planting them into your skin yourself. Red threads? Blue threads? “Let me refer you to a psychiatrist.”
Now you’re in a pickle. Someone has entered “delusional parasitosis” into your electronic medical records and the diagnosis is yours forever, like someone tattooed it across your forehead. In fact, years ago some cynical physicians coined the term “matchbox sign,” meaning when a new patient brings evidence of a parasite in a matchbox, save time and send her immediately to a psychiatrist.
If you’re curious to see a few of these thread, specks, etc., click here and scroll down, but—WARNING–some of the photos require a strong stomach. Yet even when doctors are shown photos like these, patients are simply not believed. The alleged expert on Morgellons at one of Chicago’s major teaching hospitals is neither an infectious disease specialist nor a dermatologist, but rather a psychiatrist.
However, some years ago, California nurse practitioner Ginger Savely, who had been working extensively with Lyme patients, discovered that her Morgellons patients were very frequently testing positive for Lyme. Later, Canadian veterinarian M.J. Middelveen noted a similar thread/filament-producing condition in cattle called Bovine Digital Dermatitis (BDD). Both Lyme and BDD were caused by a spirochete, a type of bacteria that’s a cousin to syphilis. Middelveen contacted physicians who had been taking their Morgellons patients seriously and inquired if they had tested blood for spirochetes.
Fast forward: when the vast majority of Morgellons patients tested positive for the familiar spirochetal infection, Lyme disease, or a second tick-borne (and flea-borne) illness, Bartonella, Middelveen published her findings in several leading dermatology journals.
And the silence was deafening.
What Savely and Middelveen had shown, later confirmed by other Lyme researchers, was that 90% of Morgellons patients tested positive for Lyme or Bartonella. These were patients who either knew they had Lyme disease but had received inadequate antibiotic treatment (less than three weeks) or, alternatively, were completely unaware they had Lyme but now tested positive for it.
In addition to their skin issues, many of the patients with persistent Lyme had been feeling unwell for years with fatigue, muscle/joint pains, brain fog, and feverishness. Like those with Morgellons, they had been repeatedly told “we can’t find anything wrong with you.”
CDC limits Lyme definition
The Centers for Disease Control (CDC) now reports there are 300,000 new cases of Lyme disease every year. Although Lyme originally came from the East Coast, it’s appearing in high numbers in Michigan, Wisconsin, and northern Illinois. The number of new Lyme cases now exceeds the number of new cases of breast cancer (246,000) annually.
Keep in mind that the annual 300,000 new Lyme cases is likely a very low number, representing only patients actually diagnosed with Lyme via a blood test. Add to this group the patients who got a “summer flu” and didn’t go to a doctor as well as those who went to a doctor but weren’t tested for Lyme, and the number is much (!) larger.
The CDC has chosen to limit the definition of Lyme to the acute form (flulike illness appearing a few days after a tick bite). It ignores chronic Lyme disease, the condition that can follow an inadequately treated acute case or an undiagnosed (and never treated) acute case that is allowed to fester for years.
The reason for the CDC’s position (shameful, to my mind) is this: blood tests for chronic Lyme are frequently negative. So if the patient has signs and symptoms of chronic Lyme but no positive test result, there is no disease. End of discussion.
But now we’re learning that the Lyme spirochete (Borrelia burgdorferi) has the unique ability to change its shape and form as part of a survival strategy that allows it to hide. This means it can elude the patient’s immune system as well as the medical testing systems we’ve developed.
So the current thinking in American medicine is this: Morgellons is a delusion and patients who believe they have it need a psychiatrist. When presented with evidence that Morgellons is caused by chronic Lyme disease, the response is “Well, chronic Lyme is a delusion, too.”
Where you’re chronically ill and doctor after doctor writes you off as seriously deluded, you feel extremely isolated and depressed.
Earlier this year, I read an article about the annual Morgellons meeting held in Austin, Texas, every April. Both patients and physicians are invited. Unfortunately, there are more of the former than the latter. One patient said, “I’d rather have cancer than Morgellons. At least doctors pay attention to you.”
As a follow-up to this undeniably cheerless article, there actually is a treatment protocol for a Morgellons patient who tests positive for Lyme. Several of us at WholeHealth Chicago recently attended the International Lyme and Associated Diseases (ILADS) meeting in Philadelphia and learned that doctors are getting good results with a three-drug antibiotic protocol. Not surprisingly, since the spirochete of Lyme is a cousin to the spirochete of syphilis, the program is similar to that used for tertiary (advanced) syphilis.
The thymus sourced peptide Thymosin alpha 1 is now available from certain compounding pharmacies in limited quantities. This has proven useful in the past for both chronic Lyme and Morgellons) and I was glad to see it back again.
For Morgellon’s, we have been recommending intravenous ozone with ultraviolent along with the Klinghardt Parasite Protocol, also available from compounding pharmacies.
David Edelberg, MD
19 thoughts on “The Loneliest, Saddest Patients In America”
Wow! Thank you for this amazing act of generosity and for validating those of us who have been suffering this medical gaslighting. Thank you everyone who shared additional information in the comments. I feel like I’ve found my tribe.
what about the connection to Bartonella ? I have a rescue cat, Vet believed had Bartonella , he was very very sick, he was nursed by me and got better but it took rounds of Antibiotic’s and hand feeding and being in his own room, air purifier, humidifier nonstop care for a month then he got the horrible Stomititis he is now a healthy happy cat but he had to have all his teeth removed and I still worry all the time! Is Bartonella a zoological disease? I have no symptoms like this of itching, I washed my hands all the time and kept him isolated from the house until he got better but I did have him in my house for a few days running around before the onset of his problems, he is a wonderful fur baby I am glad I saved him he is the heart of my life but the strain of it all was pretty terrible, I doubt this will ever happen to me but you did not mention the link only from Lyme.
It’s possible to contract Bartonella from a cat but its also easy to diagnose and treat. Ask your doctor to test for antibodies in your blood for Bartonella and if positive s/he will rx antibiotics.
Morgellons probably, could be easily. cured if physicians open their mind.
Doctors refuse to examine patients’ hair and label the lesion on skin as scratching. In Europe, some physicians say that Morgellons is caused by a tiny fly or spider that lives in soil. Something like a fungus gnat or eye gnat, but smaller and gets into people hair where they nest by cutting pieces of hair and segregating a kind of web (fiber). When people comb their hair the fibers fall over legs, back and chest producing skin lesions. People, that work in garden or like to keep house plants, are usually the ones affected. In addition to be parasited with this type of gnat or small spider; some people get bite by ticks and develop Lyme disease. That is the most logic explanation I heard; but physicians in this country don’t look for answer because they believe it is delusional without proof or evidence.
Yes, many medical providers in the United States unfortunately dismiss Morgellons. There is not enough research, to your point, because it is a controversial diagnosis. WholeHealth Chicago does believe in parasitic infections and works with patients to rid the infection- often times with success.
Morgellons probably, could be easily. cured if physicians open their mind.
Doctors refuse to examine patients’ hair and label the lesion on skin as scratching. In Europe, some physicians say that Morgellons is caused by a tiny fly or spider that lives in soil. Something like a fungus gnat or eye gnat, but smaller and gets into people hair where they nest by cutting pieces of hair and segregating a kind of web (fiber). When people comb their hair the fibers fall over legs, back and chest producing skin lesions. People, that work in garden or like to keep house plants get affected. Some people that in gardening in addition to be parasite with this type of gnat or small spider; also get bit by ticks and develop Lyme disease. That is the most logic explanation I heard; but physicians in this country don’t look for answer because they believe it is delusional without proof or evidence.
Is Chronic Lyme’s contagious to family members in particular grade school children or younger if all live in the same household with parent who has Lyme’s Disease? Also can it cause mental health problems for children?
Lyme is fortunately not transmitted through human to human contact. It is usually, though not exclusively, transmitted via ticks. In regard to mental health in children, there can be an affect on mental health. Please feel free to contact the office at 773-296-6700 to discuss both of these concerns further.
Hi Dr. Edelberg!
I had the pleasure of meeting you at an ILADS conference. I want to thank you on behalf of the Charles E. Holman Morgellons Disease Foundation for writing this amazing and compassionate article.
Morgellons patients are the most cruelly victimized of all tick-borne disease patients, usually getting a knee jerk delusional diagnosis without any skin examination and often in the absence of any medical work up. Rarely ever does the media ever cover the truth about Morgellons so your article means a lot to us.
I wish every Lyme doc would speak up about the reality of Morgellons.
Thank you so much for shining a light on our darkness!
Thank you for taking the time to read and comment on the article.
I have read hundreds of articles on the topic of Morgellons and this by far is the best. You took the words right out of my mouth. I have been dealing with symptoms of this disease for about five years now. Its destroyed my health, my relationships with my family, its taken my pride, my self worth, my self confidence, at times my desire to live. I have been to countless of doctors to the point I just gave up. I cant work up the courage to even think about going to see another one. The explanation of the horrible looking scars on my body is to much for me. I try to think pf one person to go along with me for encouragement and then I would have my family ready to get me committed for acting crazy again. If they only knew I am really sick. I just watched the passion of Christ on Christmas and his words stuck with me. Forgive them father for they do not know what they do. I know they love me and if I had cancer they would be right here fighting it with me. They need a diagnosis and I cant give them that. Thank you for this article its given me hope and maybe I can muster up enough courage to find another doctor. If you know any good ones in Indianapolis I would sure appreciate the referral. God Bless
We are so sorry to hear about your challenges with Morgellons. If you are looking to connect with providers that both believe in and understand Morgellons, please give the office a call at 773-296-6700. We can see patients out of state as we do offer virtual visits.
Thank you for sharing this information. After 15 years, from seeing the bullseye rash to being officially diagnosed,… the experience is extremely isolating and yes… lonely. Thank you for putting this experience with Lyme disease into clear words. And this new treatment. I appreciate you and your staff immensely.
15 years is a long time… thank you for reading this article. Though you may at times feel alone, you are not.
Dear David Edelberg, MD, & WorldHealth Chicogo,
I applaud you immensely! Your article on Morgellons disease is brilliant and illuminating.
Please consoder contacting me. I am one of the leading advocates for Morgellons disease.
This is me, Lance:
I am currently in meetings with government officials and have made them an offer they cannot refuse – SCIENCE! Science that proves Morgellons disease is a real physical disease (www.thecehf.org/research), and so much more. They believe me and fully stand behind my mission to have the government validate Morgellons as a true infectious disease.
I am currently under the care of a top Infectious Disease Specialist whom I submitted a 160-page binder of scientific evidence on Morgellons disease. He believes the science which proves Morgellons is real. In conjunction with Marianne Middelveen, he has recently had my “Morgellons skin lesion tissue” samples tested at a university, positive for Borrelia burgdorferi, the Lyme disease bacteria.
I have launched a proper investigation of Morgellons with the Obmudsperson Office, an independent branch of the government. They have the opportunity to do the right thing and cause the government to validate Morgellonsas a true physical disease. If they don’t, I plan to have them investigated by the police for corruption. This is not negotiable.
I am a volunteer with the world’s leading Morgellons disease foundation, The Charles E. Homan Morgellons Disease Foundation. I proudly operate one of their social media platforms.
I am part of another Morgellons disease advocacy group http://www.managing-morgellons.com. We are behind many initiatives to have the government and CDC validate Morgellons disease, including the Joe Biden Morgellons petition. https://actionnetwork.org/petitions/we-demand-presidential-action-on-morgellons-disease
Please sign! Everyone!!
As mentioned above, I was recently interviewed by http://www.rebelnews.com – please check out my interview!
* And this interview with Marianne Middelveen:
I really hope you would be willing to contact me about Morgellons disease. Your article makes mention of “intravenous ozone with ultraviolent along with the Klinghardt Parasite Protocol.” I have not heard of this news before and I would like to know more.
Thank you once again for your excellent reporting on Morgellons disease!
All the best to you in the New year,
Glad you enjoyed the article. Please call the office at 773-296-6700 to learn more about the benefits of Ozone with UV for treating Morgellons.
Thank you for this article. I’m one of the multitudes of people who were told to see a psychiatrist when I presented symptoms of Lyme Disease, without verification from a positive blood test. I traveled for years out of state to see Lyme literate doctors, using sick days while working a job as a teacher’s aide. As a singer/songwriter, I wrote a song about the amazingly resilient bacteria that causes Lyme. Titled “Song of the Spirochetes: Lyme Disease on the March,” it’s a marching anthem with a colony of borrelia burgdorferi singing about how they survive in the face of attacks by antibiotics, as well as how the ecological conditions created by humans have increased the numbers of their hosts, ticks. You can listen to the song here, and download it, if you wish. https://www.paulettemeier.com/lyme-disease-on-the-march.html
Thank you for sharing both your story and your song.