Welcome to MedHelp Lyme!
Bravo for you with your intrepid investigation and reporting! You have the soul of a scientist, and that will do you well in figuring out and dealing with this situation.
I could not remember just now the name of the condition I wanted to mention to you, so I google-searched for
fluorescent fibers skin
and got many interesting hits, including some for Morgellon's, which is the name I couldn't remember.
You might search for Morgellon's and also separately do the search I did (or something similar) and do some more scouting to formulate a gameplan to find a knowledgeable MD.
Morgellon's is cutting edge medicine, and it is getting quite a bit of notice lately, I think.
If you like, would you come back and tell us what you are figuring out? I would be very interested to hear. If we have any further suggestions, we will be happy to share, since everyone with Lyme goes down a similar of path of dealing with a new and somewhat mysterious ailment.
Best wishes to you!
One of the hits that came up in my search is a wordpress blog-thingy at this location on the net (take out the extra spaces and so on ... then copy and paste to a new browser window ... the bot on this site blocks URLs that are fully functional). This post was a year ago, and is strictly fwiw:
morgellonspgpr [dot] wordpress [dot] com / 2012 / 02 / 15/ the -morgellons- research- foundation- shuts- down /
Also in that wordpress location was pasted this, in a posting. I paste it here because RB Stricker and VR Savely, two of the authors, are well known in the Lyme field. Stricker is an MD, not sure about Savely. This doesn't mean Lyme and Morgellons are related, but simply that there are inquisitive medical people looking into both ailments which are equally misunderstood by mainstream medicine:
Contribution of Agrobacterium to Morgellons Disease.
RB Stricker, VR Savely, A Zaltsman, V Citovsky
California Pacific Medical Center, San Francisco, CA
International Lyme & Associated Diseases Society, Bethesda, MD
State University of New York, Stony Brook, NY.
Background: Morgellons disease is characterized by dysesthesias and dermatologic lesions that range from minor to disfiguring (Savely VR, LeitaoMM, Stricker RB. Am J Clin Dermatol 2006;7:1-5). The disease has been reported primarily in Florida, Texas and California. Although an infectious etiology of Morgellons disease has been postulated, treatment of the disease remains problematic, with many patients having inadequate responses to antimicrobial therapy. Skin biopsies of Morgellons patients reveal non-specific pathology or an inflammatory process with no observable pathogens, often with fibrous material projecting from inflamed epidermal tissue. Morgellons skin fibers appear to contain cellulose. This observation indicates possible involvement of pathogenic Agrobacterium, which is known to produce cellulose fibers at infection sites within host tissues. Methods: Skin biopsy samples from two Morgellons patients were subjected to high-stringency PCR testing for genes encoded by the Agrobacterium chromosome. Screening of the same samples for Agrobacterium virulence (vir) genes and T-DNA sequences in the patient’s genome was also performed. Results: PCR screening indicated the presence of Agrobacterium genes derived both from the chromosome and from the Ti plasmid, including the T-DNA, in tissues from both Morgellons patients. Conclusions: Our preliminary results indicate that Agrobacterium may be involved in the etiology and/or progression of Morgellons disease. If these results are confirmed, it would be the first example of a plant-infecting bacterium playing a role in human disease.
Further testing is ongoing to validate this observation and to determine whether Agrobacterium not only resides in the infected areas, but also transforms them genetically.
Research Update, January 14, 2007
Vitaly Citovsky, Ph.D.
Our continuing screen of additional Morgellons patients has identified Agrobacterium genetic material in three additional individuals. Thus, all Morgellons patients screened to date have tested positive for the presence of Agrobacterium, whereas this microorganism has not been detected in any of the samples derived from the control, healthy individuals.
SEM Images of Morgellons Patients’ Fibers and Lesions, SUNY
Below, please see eight SEM (Scanning Electron Micrograph) images generated by Dr. Citovsky’s research group at SUNY Stonybrook.
(We would like to thank Mark Darrah, Research Director of the Morgellons Project in Dr Citovsky’s lab, for arranging for the SEM imaging which was done at the Materials Science and Engineering Dept, Stony Brook University. Dr Citovsky’s group, under the direction of Mark, is continuing to research Morgellons disease and we will share new information from his group as it becomes available to us.)
Image 1: White Fiber – Calcite covered
Image 2: Green Fiber emitting microscopic Alumina “rock”
Image 3: Ribbon-like fiber coated with minerals with a cylindrical fiber and faceted fiber adjacent
Image 4: Skin Lesion of patient one with fibers stabbing through epidermis – note the smaller fibers
Image 5: Skin lesion of patient two with large and small fibers as in patient one
Keep us posted on how you do and what you do -- I admire your grit.
You go, girl!
Sorry to hear about your health struggles. I was also thinking about Morgellon's as I read your post. I encourage you to do as much research as you can. There is very little in the way of "official" research. I believe Oklahoma State University is the only institution that acknowledges doing research. Thanks to the internet, patients are helping each other identify the disease, connect with others, and find doctors to treat them.
Some years ago, Infectious Disease doctors decided that patients with your symptoms had psychiatric problems manifesting themselves in physical symptoms. They call it "Delusional Parasitosis" because so many of them describe itching, crawling feelings under affected skin. (I expect they decided to blame the patients because the skin lesions and fibers are bizarre and unexplainable, and they couldn't find any particular cause for the patients' symptoms. They say the strange fibers must be from clothing. Doctors' standard reply when they are stumped seems to be to blame the patient.)
About a year ago, the CDC completed a secretive and low budget "study" using blood samples provided by Kaiser Northern California, which has quite a few patients with the symptoms. They did not allow input nor did they seek advice from people most familiar with the disease. Their conclusions were infuriating: They said that because they couldn't find a physical cause, it must by psychiatric. The most disturbing part is that they recommend that no more research should be done to find an infectious cause.
(Note: Their statement that the fibers are cellulose and are probably cotton is flat wrong. Other private studies have shown the fibers to be made of keratin, which is produced by skin cells. All reported colors of the fibers are known to be produced by these cells. Also, many of the patients tested positive for pain medications, leading the CDC to imply they're addicts. They failed to consider the significant pain many patients report. )
The quote below is from this web page. Within this page, there is a link to the published study. There is a picture of a blue fiber in it you could compare yours to.
Results of the study, published in PloS OneExternal Web Site Icon show this condition appears to be uncommon among a population representative of Northern California residents. Skin damage from the sun was the most common skin abnormality found, and no single underlying medical condition or infectious source was identified. Upon thorough analysis, most sores appeared to result from chronic scratching and picking, without an underlying cause. The materials and fibers obtained from skin-biopsy specimens were mostly cellulose, compatible with cotton fibers.
Neuropsychological testing revealed a substantial number of study participants who scored highly in screening tests for one or more co-existing psychiatric or addictive conditions, including depression, somatic concerns (an indicator of preoccupation with health issues), and drug use.
This comprehensive study of an unexplained apparent dermopathy demonstrated no infectious cause and no evidence of an environmental link. There was no indication that it would be helpful to perform additional testing for infectious diseases as a potential cause. Future efforts should focus on helping patients reduce their symptoms through careful attention to treatment of co-existing medical, including psychiatric conditions, that might be contributing to their symptoms.
Never mind that the other symptoms the Morgellon's patients describe are all consistent with Lyme Disease! And borrelia is notoriously difficult to culture. They could easily have missed a new variation of borrelia that doesn't show "positive" on Lyme tests.
Sympathetic doctors have discovered that a significant majority of Morgellon's patients have Lyme Disease and improve with extended antibiotic treatment. The two biggest clusters of the disease in the US are in Texas and California. Quite a few patients ended up at Dr. Stricker's office in San Francisco and he began making observations and publishing papers.
He and his cohorts have theorized and recently produced evidence that it is caused by a spirochete. (Spirochetes also cause syphillus, Lyme/Borreliosis, leptospirosis, et.al.) He says many patients describe onset of symptoms after insect bites or interaction with soil. He thinks it's an insect transmitted disease similar to Lyme Disease, but with unusual skin manifestations.
Check out his very recent papers on it. I am not aware of any response by the CDC to these recent discoveries.
Additional notes & thoughts:
Morgellon's has also been reported in Europe and Australia where patients are also dismissed as psych cases.
It's possible you felt worse on a particular treatment because it was having some effect on the underlying infection. You could be "herxing", just as many Borreliosis patients do.
You could have had it for quite a while, but your immune system was holding it to just skin lesions. Your most recent symptoms are consistent with Borreliosis.
You are not crazy!! It is a real illness that can be serious. Unfortunately, because it isn't understood, your best hope is to find a doctor who believes you and will look into it. I encourage you to connect with patient advocacy groups to get as much information as you can.
Wow, thanks you two! Two great answers. Yesss, I love Science Jackie. The things I could do if I had money and a microscope. Since money is a huge issue for me, I was so hopeful that there could be other possibilities. Morgellons seems like a death sentence and huge investment for someone that don't have much. I've noticed lots of different recommendations and protocols that are absolutely ridiculous in length. Then there are others that specify not to do that. Lots of conflicting information! And most of the recommendations are natural anyway so there is no proof on the goods. I try to avoid all of the websites trying to sell something and rather read blogs and such instead. But still, all the conflicting information on what really works is so annoying. I've contacted doctors else where that I've located online, and they just want to sell me off on hundreds of dollars worth of some homeopathic mixture. Both doctors I've contacted has totally different approaches of treatment. I'm in Indiana, so I have absolutely no idea if the doctors here have even heard of Morgellons. I never did prior. All of the research that I've done over the years never even came close to Morgellons. It was the protruding 2 inch hair that lead me directly to Morgellons. I think it may be more common than people think since it seems to be so highly contagious. I say that because I can see it in the air. It looks a lot like dust, only slightly stringy. Or maybe it's in the environment, but only some people are infected. They say middle age, caucasian women are most likely effected, but I'm far from middle age. Some people may even be treated for something else, like allergies, folliculitis, scabies, herpes, CFS, or of course DOP. This disease often causes psychological issues, some look and feel awful so the live depressed, in isolation. This disease also resembles drug abuse as well, which is the most disturbing part. The CDC don't bother testing the study participants drug levels. They just check whether or not it was in their system and so conclude that they are addicts. If I didn't take adderall, I would be in bed and completely unable to think my way through this. But if the actual levels were checked they'd find a therapeutic amount and they wouldn't find anything else.
It's interesting how online interviews of Morgellons sufferers make it sound like there are prevalent fibers of various colors protruding from the skin. It's not that easy to identify. It looks exactly like hair! Often masked by your normal hair, appearing ether clear or the same color. It's so weird! I would have never found it if I didn't get a UV light. But even under UV it looks exactly like cotton fibers or dust and is extremely slow moving. In my opinion, it's so difficult to differentiate. And I can totally see why people would be taken for being nuts. I may indeed have lyme. That could be the reason for a lot of the symptoms.
So far, I've bought antiparasitic ivermectin/albendazole oral combo, ivermectin subcutaneous injection for animals, and Bactrim DS oral antibiotic as well as a ton of homeopathic stuff. <3 the magnetic clay. Whatever this thing is supposedly has the ability to adapt, so I need to be wise with the dosage for sure. I hope to add doxycycline to the regimen sometime. I just hope all this works!
If you two or anyone else has any more advise, please don't hesitate to reply or message me!!
Thank you for your message back -- it is very good to hear how strong you sound, and I admire your grit and ingenuity! The internet is an amazing resource, and I can't imagine what we did without it not so very long ago.
I agree with your (appropriately) skeptical approach about the people who seem only to want to sell you stuff and and those who are so 'out there' it's hard to believe they live on planet Earth. Keep your feet on the ground as you are, and it will take you a long way in dealing with the situation.
Here's an off-the-wall thought: the semi-renegade (tho well-established), more progressive organization which focuses on Lyme disease (and also other infections that are carried by the same tick as Lyme) is called ILADS, short for International Lyme and Associated Disease Society. Their HQ is in NYC, and they have a referral function for patients trying to find a Lyme doc -- if you send an email to
contact [at] ILADS [dot] org
and tell them you are looking for a doc **with expertise in Morgellons** and what city or cities you are near or can get to, they may have some names for you -- not sure, but why not try.
Also, you might send a note or call the office of Dr Stricker, one of the docs I mentioned above as being prominent in the Lyme field and also interested in Morgellons. He is an ILADS member and a frequent speaker at their events and seminars (you can youtube him in you're interested), and altho I doubt you're up for seeing him all the way in California, his office may have names of Morgellons-interested docs that you can get to. Only costs a stamp or a quick phone call to try!
And do keep digging around online, esp. looking for docs who have published scholarly articles on Morgellons, and you might find one near you or someone to contact who might know of a doc near you. That ole networking thing.
You might also find a doc close to you who verrrrry quietly is willing to explore the possibilities of your situation, without calling unwanted attention to the situation. I've learned from this whole Lyme adventure that MDs are cattier and more political than any group of vicious 5th grade girls ever was in elementary school ... and you *know* how bad that can be! So the docs keep their heads down so they don't get in trouble with the local or state medical boards who don't 'believe' in Lyme, Morgellons, etc., but there are quietly brave docs who will try to help as long as they don't end up on the front page of the local paper labelled as a quack. So shhhhhhhh....
Stay in touch and let us know how you're doing and how your search for answers and a doc are going, okay?
We shall call thee 'Ephedra the Intrepid.' Take care, stay in touch --
It does sound like you've done a good amount of research. Jackie's suggestion to contact ILADS is good. Even if there isn't a doc nearby who has treated Morgellons before, a good LLMD should be willing to try to help you.
A local Lyme support group may even be able to recommend a doc who takes insurance ( if you have any ) who can at least evaluate you for Lyme. Lots of Morgellons patients test positive for Lyme, and that would get you some abx.
Since the medical establishment is turning a blind eye to this, patients are forced to try to figure it out for themselves.
You are welcome here!
I just did a quick search for
for no particular reason (don't know why those words seemed useful together) but wow did I find some good things! Links to articles and docs' names and so on.
For example, a link to an article just posted in the last week or so called "Association of spirochetal infection with Morgellons disease". Spirochetes being spiral-shaped bacteria, of which Lyme is one, and syphilis is another.
Also saw Savely's name (mentioned in my post yesterday) several times in the search results, so she is clearly focussed on Morgellons.
[[ There was one nasty article in the search results posted by the IDSA, Infectious Disease Society of America, which is the main voluntary group of docs who treat infectious disease generally. The article in question is about Morgellons and is from 2010 (so not that old) and titled 'Delusional parasitosis'. Do NOT let that put you off your research, just skim the article if you want to see what the non-believers are saying, but don't let them get you down. We get the same stuff from the IDSA about Lyme being all in our heads etc. Sad, but there are other docs and other organizations who aren't so dense, so focus on those.]]
Lots to read, oh Intrepid One!