Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lyme patients have had a horrendous time trying for decades to be taken seriously with our strange symptoms that come and go, that can be mild to extremely harsh and that, according to the IDSA, aren't Lyme symptoms at all. We've been ridiculed, tormented, made to sound crazy and treated like dirt.
That is no doubt a horrible way to have to survive with a chronic bacterial infection, but it isn't anywhere near the trauma and hate that has been bestowed on patients that are diagnosed with Morgellons disease.
At best, they've been officially referred to as "delusional" by idiots in the medical community. Bless their hearts, each and every one of them.
BUT....
Finally the horrible ignorant things being said to and about them- so bad that some have taken their lives- will come to an end.
Below is an abstract that, without a doubt, proves Morgellons- the symptoms and lesions- are caused by Lyme spirochetes.
I've read nearly every single abstract and study on Lyme disease that has been published since day one. This, however, is the only one that made me cry.
May their lives be improved greatly and their PHYSICAL disease be accepted now by others using the findings shown below.
Exploring the association between Morgellons disease and Lyme disease: identification of Borreliaburgdorferi in Morgellons disease patients.
Middelveen MJ1, Bandoski C, Burke J, Sapi E, Filush KR, Wang Y, Franco A, Mayne PJ, Stricker RB.
Abstract
BACKGROUND:
Morgellons disease (MD) is a complex skin disorder characterized by ulcerating lesions that have protruding or embedded filaments. Many clinicians refer to this condition as delusional parasitosis or delusional infestation and consider the filaments to be introduced textile fibers.
In contrast, recent studies indicate that MD is a true somatic illness associated with tickborne infection, that the filaments are keratin and collagen in composition and that they result from proliferation and activation of keratinocytes and fibroblasts in the skin.
Previously, spirochetes have been detected in the dermatological specimens from four MD patients, thus providing evidence of an infectious process.
METHODS & RESULTS:
Based on culture, histology, immunohistochemistry, electron microscopy and molecular testing, we present corroborating evidence of spirochetal infection in a larger group of 25 MD patients.
Irrespective of Lyme serological reactivity, all patients in our study group demonstrated histological evidence of epithelial spirochetal infection.
Strength of evidence based on other testing varied among patients. Spirochetes identified as Borrelia strains by polymerase chain reaction (PCR) and/or in-situ DNA hybridization were detected in 24/25 of our study patients.
Skin cultures containing Borrelia spirochetes were obtained from four patients, thus demonstrating that the organisms present in dermatological specimens were viable.
Spirochetes identified by PCR as Borrelia burgdorferi were cultured from blood in seven patients and from vaginal secretions in three patients, demonstrating systemic infection.
Based on these observations, a clinical classification system for MD is proposed.
CONCLUSIONS:
Our study using multiple detection methods confirms that MD is a true somatic illness associated with Borreliaspirochetes that cause Lyme disease.
Further studies are needed to determine the optimal treatment for this spirochete-associated dermopathy.
Here is a conference, THIS weekend, that is put on by the hard working people in the Charles R. Holman Foundation who never gave up and who continue to educate.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to LymeNet!
So nice to hear you think you have a cure for Morgellons and Bartonella. Have you shared this information with the medical doctors and scientists working with all of these Bart and Morgellons patients? If it works I'd think they would all be using it as these patients are really suffering.
Unfortunately too, I do not see any science to back up the theories or protocols mentioned, and some of the links provided no longer exist and/or do not have the quotes attributed to them at the sites.
In fact, I do not see references to doctors being involved in the mix above, only undocumented/unproven theories and combo's of herbs and other OTC items offered as a cure.
I'd be pleased to review any science you can share proving Morgellons is actually not Borrelia. Thanks for sharing.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Keebler- thanks for sharing. We were posting about the same time and I just saw your post. Yes, sending money to a site for a supposed cure is not a wise move. Glad you caught that.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I knew about this study from a friend in texas with morgellons. I think she may have been one of the patients tested. Im so glad itis done and out...
She did find a huge amount of relief from mangosteen juice...but like other lyme and morgellons patients had a long complicatrd history and treatment
So many variables make tx protocols so hard to discover
But having these new facts hopefully will help.
All of us dealing with these diseases go thru so much. But the pain and whole nature of the sores and fibers adds a whole other dimension to morgellons
Thank god for the researchers
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Uh-oh. Into the fray I go...
TC, you do need to watch your phrasing. Correlation is not causation. The abstract calls MD an "infectious process" "associated with Borrelia spirochetes." Just because spirochetes were found, does not indicate they are the cause of infection. The abstract doesn't even say this. (I guarantee all subjects had the standard skin commensals, Strep and Staph. But these bacteria were not implicated in MD, either.)
Proving that Lyme causes MD was not the intent of the researchers. This is a very small (25 subject) study by some of our favorite docs and researchers. This is the type of study that sets the stage for further research. It's like a proof of concept.
They are trying to establish that 1. MD as a physical, not psychological, illness that 2. is found in patients with serological evidence of Borrelia spirochetes.
Yes, this is huge. In the Lyme community, we know MD manifests in some Lyme patients. It has long been considered another co-infection, likely an agrobacterium. But we also know you don't have to have Lyme to have Morgellon's. There are vectors other than ticks for Morgellon's.
This is the first step in getting this information out to the medical community. More research money can be requested based on findings like this.
The physical and emotional suffering of MD patients cannot be underestimated. They have actual physical manifestations of their disease, but they are still called delusional. The way they are treated is unethical and, quite frankly, inhumane.
This study gives patients credibility and theirs docs some leverage in treating them, but it does not say spirochetes cause MD.
I am just a stickler for truth. Not trying to pick on anyone.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
As for the other post above, by the time we are adults, our genomes are 20-50% pathogenic DNA.
All our microbes hook their DNA onto ours. Little freak-shows! Stay out of my DNA!
Microbes also have the ability to "switch on" dormant genes. Some use this process to replicate. Sometimes it simply improves the environment for their survival. This is well-known in the fields of infectious disease and epigenetics.
So, agrobacteria and Bartonella are not the only microbes to alter our DNA. Far from it.
MD is not Bartonella. It is very likely an agrobacterium, however. If so, it's possible it was genetically engineered.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey Boxermom... I love to be challenged with the science. Keeps me on my toes, makes me think more. And truthfully, you got me. I admit, sheepishly, I did not read read (just skimmed) the abstract. I went straight to the actual study, then read it through a couple of times and parts of it 3 or more times.
Plus, I am factoring in my previous reading of nearly all, if not all, Morgellons studies by both sides. Plus, I originally suspected Morgellons was a "symptom of Lyme" years before this all started based on the patients I worked with over the years. So my excitement here has a lot to do with the fact they will hopefully be vindicated and better yet, will be appropriately treated.
Plus, it is another feather in our caps because it shows even those with antibiotic treatment for their Lyme/Morgellons years later still have viable spirochetes IN the actual Morgellons lesions, such as is already (years ago) been proven to be with Lyme/ACA.
I understand your comments considering the authors wording in the abstract, but please do me a favor and read the actual study if you would. And that is my fault for not providing the link to it earlier.
I also had made some quotes from the study which I will post below for those who don't want to wade through the "thick of it" and would rather just see some highlights.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Quotes... (and MD refers to Morgellons Disease)
"These preliminary studies suggest that MD may be a particular manifestation of LD and that strains of Bb sensu stricto and Bb sensu lato are implicated as etiologic agents [7,8]."
-------------------------------
"Motile Borrelia spirochetes were cultured in medium inoculated with skin scrapings from 4 patients, thus demonstrating that Borrelia spirochetes in MD lesions are viable."
-------------------------------
"Spirochetes characterized as strains of Borrelia were detected by PCR and/or in situ DNA hybridization in tissue or culture specimens from 24/25 patients; 15 of these patients had Borrelia gene products detected in dermatological specimens and/or skin cultures taken from MD lesions, and DNA amplicons from 14 patients were sequenced and confirmed to be Borrelia strains.
Vaginal secretions from four patients were cultured, and three isolates were identified as Borrelia strains by PCR and in situ DNA hybridization."
-------------------------------
"Lyme borreliosis is a systemic infection that is commonly associated with dermatological manifestations [35]. Given that most MD patients are serologically reactive to Bb antigens, the presence of Lyme spirochetes in MD dermatological lesions is predictable and supports an etiologic role of the spirochetal disease.
Bb sensu stricto and Bb sensu lato have been associated with numerous dermatological manifestations including erythema migrans, borrelial lymphocytoma, acrodermatitis chronica atrophicans, morphea, lichen sclerosus, cutaneous B-cell lymphoma, scleroderma, lymphadenosis cutis and prurigo pigmentosa [35-38].
Likewise it appears that MD is associated with Lyme disease in a subgroup of patients with this spirochetal illness [6-8]."
-------------------------------
"The mechanism of filament formation in MD is not yet elucidated. The filaments are composed of keratin and collagen and arise from proliferative keratinocytes and fibroblasts in human epithelial tissue [6,9].
Bb appears to have a predilection for fibroblasts and keratinocytes, and invasion of these cells by Borrelia spirochetes has been reported [40-42]. Bb appears to attach to fibroblasts followed by engulfment of the spirochetes, formation of vacuoles and intracellular replication [42]."
-------------------------------
"It is therefore reasonable to hypothesize that Bb intracellular infection of keratinocytes and fibroblasts may alter keratin and collagen expression and that the presence of Borrelia spirochetes in dermatological tissue is a primary etiologic factor in the evolution of MD lesions.
Viable Bb spirochetes have been isolated from lysates of fibroblast and keratinocyte monolayers treated with antibiotics [40,41]. Therefore, in addition to protection from host defenses, sequestration within fibroblasts and keratinocytes may protect Bb from antibiotic therapy."
-------------------------------
"Spirochetes in MD dermatological tissue from Patients 1 and 12 were reactive to anti-Bb immunostains and we detected Borrelia DNA in dermatological tissue taken from these two patients.
These patients were receiving aggressive antibiotic therapy at the time of this study. Patients 2, 8, 13, 19 and 20 had previously received antibiotic therapy for Lyme disease, yet still had detectable spirochetal infection.
Persistent infection refractory to antibiotic treatment may therefore result from sequestration of Borrelia spirochetes within keratinocytes and fibroblasts in MD patients."
-------------------------------
"Although spirochetes appear to be the primary etiologic agents of MD, evidence suggests that the etiology is multifactorial. Secondary etiologic factors, such as female predominance, immune dysfunction, and other tickborne coinfections appear to play a role in the development of this dermopathy [1-5]. "
-------------------------------
I like this part below, makes me smile. It is basically saying the tests/methods the CDC promotes are missing the infections.
"A study from the Centers for Disease Control and Prevention (CDC) concluded that pathogens were not involved in MD [22]. The search for spirochetal pathogens in that study was limited to Warthin-Starry staining on a small number of tissue samples and commercial two-tiered serological Lyme disease testing as interpreted by the CDC Lyme surveillance criteria [22].
It should be noted that only two of the patients in our study group were positive for Lyme disease based on the CDC Lyme surveillance criteria and yet Borrelia spirochetes were readily detectable in this group of 25 MD patients."
-------------------------------
"Third, unlike secondary and tertiary syphilitic skin lesions where treponemes are seldom detected, we observed that MD lesions carry a high spirochetal load that allows for relatively easy detection, similar to lesions seen in cattle with BDD. "
-------------------------------
"The detection of Borrelia spirochetes in dermatological samples from a larger group of MD patients further validates the infectious nature of this dermopathy. As noted above, T. pallidum spirochetes are seldom detected in secondary and tertiary syphilitic skin lesions, even when sensitive molecular techniques such as PCR are performed, yet syphilis spirochetes are acknowledged to be the causative agent of these lesions [53-55]."
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Kayak- I've noticed lately, when I am here- that your typing and your flow of words seems to have improved. I pray that is because you are feeling better? Sure hope so!!! Just the thought of that makes me smile!
And I agree with you. The added skin manifestations they have identified more recently, like the Morgellons lesions, makes it tougher for those who are experiencing these symptoms.
Seems like we have an array of manifestations with Lyme, like arthritis, neuro symptoms, muscles problems, eye problems, and skin manifestations. My thought is we will continue to link more skin manifestations to late or chronic Lyme as time goes by, as well as other previously defined diseases with no known cause or cure, such as MS.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Boxermom- I keep re-reading your post wondering if I am missing something as I can't sometimes see the forest for the trees you know. Then it hit me.
You said... "They are trying to establish that 1. MD as a physical, not psychological, illness that [I agree and I have always thought of it as a physical disease] and "2. is found in patients with serological evidence of Borrelia spirochetes."
I agree with that. But, here is where I am confused, aside from the fact it isn't simply "serological evidence- it is a lot more- multiple tests, multiple methods, multiple patients and multiple sites (in/on the body) of testing the patients.
I am looking at Morgellons as being the actual lesions stemming directly from a systematic Lyme infection, along with the patients having other more well-known Lyme related symptoms too. In other words, Lyme spirochetes are the cause of the lesions (since they were detected in the lesions) and are the cause of the other more well-known symptoms of Lyme.
It appears you are saying- and that is based on the abstract and your past reading and my trying to understand- the lesions are caused by something other than Lyme (perhaps the agrobacterium you mentioned) and Morgellons disease is a co-infection of sorts in some Lyme patients. Am I anywhere close to "getting it"?
(I get turned around in the abstract world, so I am trying to get on solid ground. It's not you, it's me.)
Ok. It appears to me from the study that Lyme spirochetes are the direct cause of the lesions since they were cultured from the lesions. The previous study findings were relied on in the study as the reason why the lesions were produced, like the reason for the "threads" seen protruding from the lesions.
You know what, now I've got myself all confused. I'll let you respond so I can see if we are talking about the same thing, or something different, or what. HA!
Oh and you also said.. "There are vectors other than ticks for Morgellon's."
Sorry, I am not familiar with any studies (or patient reports) indicating other vectors are the cause of Morgellons disease. It is very possible I missed that and or just plum forgot. Can you please explain?
posted
Maybe if borrelia isn't the actual cause of the MD lesions, then it just "likes" them or has a symbiotic relationship with another organism involved.
I think there can be so many infectious/vector type maladies that can be tied back to lyme since exposure is so widespread. We know that once the door is open for lyme to get a foothold, many other infections can follow suit. The same conditions that allow lyme to flourish are the same for other stealth infections, whether lyme is in the picture or not.
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
TC - Thank you for linking the full study! Yes, I will comment. I have a nasty head cold and my brain is the size of a beach ball. Ugh.
Don - also interesting. Will be back, post beach ball brain.
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