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Friday, October 2, 2009

Stranger than fiction: The third rail?

I have avoided the topic. But this story must be told.

My patient described in this post is a fifty something year old woman who has suffered with intractable neuroborreliosis for years. She failed numerous courses of IV Rocephin. Several years ago she presented with diffuse, small circular, open skin lesions particularly on her forearms. She told me fibers were coming out of the lesions. The patient had never heard of Morgellon's disease; still, I was a bit skeptical. When I witnessed fibers extruding through her skin while she was in my office I knew something unusual was afoot. Treating Lyme disease pursuant to ILADS methods is troublesome enough in my state. Thankfully, she was able to see another physician in California who has had success treating this strangest of maladies.

In addition to her strange dermatological disorder she experienced chronic weakness, pain and confusion. Psychiatric symptoms included auditory hallucinations and racing manic-like thoughts. Her brain MRI showed diffuse white matter lesions. Her neuro-motor and cognitive disabilities left her disabled and feeling hopeless. She failed numerous courses of intensive treatment for both Lyme and co-infections. Her last fairly-recent course of Rocephin for 6 consecutive months had proved unhelpful. My colleague 3000 miles away treated her aggressively with a unorthodox regimen of Stromectal, Ivermectin and Albendazole in various combinations along with Diflucan and antibiotics.

After a year of these therapies her skin was clearing but the other symptoms remained.
She was seropositive for Babesia and had been treated with Mepron and Zithromax for nearly a year. Still, she continutined to have Babesia-like episodes associated with severe sweating. I decided to head in a new direction.

I started with IV Zithromax and Plaquenil. She had some good days: promising. I added Tindamax--a different anti-parasitic drug. It appeared to offer some further benefits. Then I added Malarone, one three times a day with Artemesin; she was definitely improving but my end point, cessation of sweating, had not occurred. Then I added Cleocin, only 300mg twice daily. The sweats were finally gone. And magically--she was back.

Of course she wasn't 100% better but she was stronger and able to attend to household activities. Her mind was fairly clear. She even helped one her kids with math homework.
None of this would have been conceivable 5 years ago.

So what is Morgellon's disease? Is a parasite? Is it a strange manifestation of a Lyme co-infection? It has been reported that 95% of Morgellon's patients also test positive for Lyme.


bobcat said...

Thank you for posting this.

So are you speculating that the Cleocin was helpful against either babesiosis/piroplasmosis or another "babesia-like" organism?

Mepron has not produced great response for me, despite testing positive on numerous babesia tests. Malarone has helped a little, but I can tell it will not be curative of symptoms.

So in the last two weeks, I've been obsessed with the idea that my LLMD should add Clindamycin to my Malarone (so I was shocked read this blog post because it's been on my mind all week).

Here's why I randomly decided to ask for Clindamycin: After reading people's experiences on the various "Lyme" websites, I started noticing that a minority of Lyme patients that were saying Clindamycin was definitively the best thing they've ever taken.

Interesting, since it's supposedly not a great Lyme drug. So then it clicked in my mind that maybe it was killing some kind of piroplasm-like organism that for some people is not responding to these atovaquone-heavy protocols. Why else would people either not be impressed with Clindamycin, or say it's the best med they've ever taken? (not too many gray areas)

Fueled by my new mini theory, somehow after clicking things related to clindamycin, toxoplasmosis, cryptosporidum, etc on, I came across this chart that lists many relatives of babesia, and next to each bug is a list of drugs or a drug to treat that bug.

Guess what was next to babesia? Clindamycin only. Despite Atovaquone, Proguanil, and various antimalarials being elsewhere on the chart, for some reason Clindamycin was the only drug listed next to babesia. I don't know why, but I took it as a sign.

I'm certainly not saying this chart matters....we're talking Wikipedia here, so I don't expect it to prove anything or be interpreted as definitive fact.

I just found it all to be a strange coincidence. Then this blog post! WOW!

And I did casually ask to be put on Clindamycin recently, after I got sick of speculating. I was rejected. Haha.

Unknown said...

Some Lyme sufferers with Morgellons complain about long strong fibers growing out of their skins. These fibers are allegedly produced by a common soil bacterium, Agrobacterium tumefaciens, which invades the skin of immunocompromised people when their wounds contact soil.
An interesting hypothesis blames genetic engineering:
Another view is offered by Vila-Rodriguez and Macewan Am J Psychiatry. 2008 Dec;165(12):1612
"Delusional parasitosis facilitated by web-based dissemination." (!)

glytzhkof said...

Courageous to write about this toxic topic. Rarely have I heard of patients being more ridiculed or harassed for simply reporting what they see with their own eyes. All the Lyme literate doctors I have talked to agree this condition is real. They usually go: "...want to see the fibers?" - they have collections of the fibers from patients they have treated. Seeing is believing as they say. I am sure, however, that the overall strangeness of the disease may attract some nuts as well. As explained in the Wikipedia article on Morgellons, the fibers have been put through forensic testing, and the conclusion was that the fibers aren't man made, but probably a byproduct of the life cycle of a biological organism. As stated by a previous comment, the leading theory is that the fibers are produced by Agrobacterium that can only live in the skin of immune-suppressed individuals - such as Lyme patients.

My Lyme experience has been dominated by cognitive difficulties, all sorts of skin ailments (including purpura, paresthesia and others) plus the usual Lyme problems of fatigue, joint ache etc... I am almost convinced that I have either Babesia and / or Bartonella as well - in particular Bartonella since the purpura I have seem to resemble what I have seen online for Bartonella cases. I was never tested for Bartonella, but tested positive for Rickettsia and Chlamydophila in addition to Lyme. As I stated in an earlier post I noticed significant effect of anti-parasitic drugs such as benzyl benzoate and Ivermectin.

There is something in my body - it has a life cycle, and it seems impossible to kill. Antibiotics work, anti-parasitic drugs work, nothing else seems to work. I do not have fibers sprouting from my skin, but I have had a plethora of skin ailments over the last 10 years. Lyme truly seems to be a "Lyme complex" - a melting pot of all sorts of ailments facilitated by Lyme's immune-suppression and the yo-yo nature of the disease progression and manifistation serves to discredit sufferers as being some sort of lunatics.

Lyme report: Montgomery County, MD said...

A close friend in the gene therapy business is very familiar with Agrobacterium. It is widely used as vector for genetic modification crops such as soybeans. In animal models genes are transferred with viral vectors, not bacterial ones.

Much of the food we eat in America is genetically modified without our knowledge. We are "shielded" from this information. The FDA does not require food producers to label those products which have been genetically modified. Some credible sources suggest that Americans and others are unwitting participants in a huge experiment.

For example, Montsanto, who manufactures Round up, the weed killer, also also produces crops that are resistant to Round up.(the subject of antitrust litigation). Here we are consuming crops exposed to large quantities of an herbicide along with genetically modified foods tolerant to the herbicide.

The animals we consume are produced with large quantities of antibiotics and hormones. Food labels do not disclose the use of these agents. The FDA argues that genetic modification of crops should be treated in the same manner. Organic produce anyone?

European countries have consistently banned the use of genetically modified foods. Do they know something we do not know? Europe has been accused of violating free trade agreements for the refusal to buy these items.

Does the use of genetically altered Agrobacterium play a role in Morgellons disease or other chronic illnesses in the US?

The fact that the disease is killed with anti-parasite drugs rather than antibiotics suggests that Morgellons is caused by a mutated parasite, not a bacteria.
it is possible that Agrobacteria DNA has been integretated into microfilaria or other parasites associated with the disease.

The widespread use of gene engineering could certainly has downstream, unanticipated consequences.

This all conjecture.

glytzhkof said...

This is a disturbing theory since it actually sounds kind of plausible - unlike some of the "conspiracy theories" found on the net. It essentially sounds like an accidental pathway to the creation of a new pathogen? As a layman the first thing I ask myself is whether this means that antibiotics such as Timentin could be useful for Lyme or this Morgellons thing, but I doubt it is that "simple".

Another thing that strikes me, is that the overall "mutate ability" of Borrelia must be far greater than expected? I did some investigation on Bacteriophages a while back. I contacted some guys in Georgia (where they actively use phages), and they replied that they were working on providing phages targeting Borrelia. I then spoke to experts who warned that using such phages could increase the virulence of Borrelia due to the large number of plasmids and the complex genome of the bacteria. I am interested in phages due to their apparent ability to cross the blood-brain-barrier. BB-1 phage.

I guess the overall conclusion is that patients really need professional advice on all of this. We're just making things worse with all these experimental treatments, and the "alternative market" seems to be growing rapidly due to the "school medicine" neglect of the illness. Every time I browse the net for info on Lyme I come across all kinds of alternative treatments - one stranger than the other. It would be really great to hear some of your thoughts on these - i.e which ones you really don't recommend people try. Personally I find the "top terrible" alternative treatments to be: colloidal silver for infections and laser treatment for inflammatory bowel diseases.

MJ said...

I cannot help in a scientific participation but I had a very particular experience recently. I stopped the bactrim and "in seconds" my face was full of different types of infections, and days later got some "open skin lesions" in the back of my shoulders and arms. I started the bactrim again and then added Flagyl, and this stopped the lesions and even dried them letting me just some scares... was it Morgellon's? no idea...! But if it is a scary idea what I found worse than worse is that the medical field denies not only the existence of Lyme Disease, but also the possibility of having parasites in North America; so, if by chance some get antibiotic treatments many are not having the anti parasite or antimalarial treatments either. This means that if some now accept the illness still deny half of the formula! If Lyme is poison, Morgellons is toxic; ok...

Norrie said...

It has been said that a great number of Morgellons patients test positive for Lyme or Lyme co-infections. I think is should be stated whether the patient had Lyme before or after they had Morgellons.

In my case, M started about 2001. I had Lyme is 2004. So that tells me that Lyme did not cause Morgellons, although right now I probably have a soup of infection going on.

Norrie said...

I have been using horse de-wormer paste on my face and scalp. I do not take it internally as so many do. I also now am using Clindamycin on my skin.

In past years I have removed layer upon layer of film from my skin. I always thought of it as a biofilm but I am no scientist.

The Clindamycin seems to dry up and peel up the last of the film on my scalp. I have had my head shaved for 5 years so I could get at my scalp in its' entirety and also no to waste product on what was not my hair.

I am not a Dr. and am not giving advice either. I am only telling some of the things I have been doing of lately. I seem to have less of the movement on my face and scalp.

Some think this movement we feel is a nervous disorder. I firmly disagree. I believe it is a pathogen. I fact, I have seen while cleaning my face with enzymes, small white string like objects that have moved slowly. This is what gave me the de-wormer idea.