The sick role and Lyme

I saw a patient today who has been treated by another physician. The patient spends nearly his entire day taking supplements along with a complex regime of antimicrobials meticulously scheduled. The medicines are rotated and pulsed within specific protocols. This patient is going broke, in part because of the high cost of supplements which he assiduously takes per his physician's directions. He has stopped working in part because his illness is a full time job. His life centers around being THE PATIENT. Lyme disease has become his life. There is no time for normalcy. The sick role can become integrated into the disease. Perhaps, ironically, some readers of this BLOG focus all of their attention on their illness--scouring discussion forums, constantly perusing the Internet, seeking some new tidbit of esoteric information. The disease becomes a life style.
Many of my patients have told me that they no longer read my BLOG or read about Lyme disease, the politics and the controversies. Of course when I see such patients we discus the course of their disease and the rationale behind prescribed therapies during each visit.

These patients may be free to pursue a life which is as normal as possible. They spend time with family and friends. They function at the highest level possible in a multitude of domains. Suffering with Lyme disease becomes something they live with: It is not the center of their universe.

Such patients get up every morning, despite pain and other symptoms, put on their best faces and face life head on in spite of adversity. Other patients are constrained within a prison, imagined or real, comprised of walls, esmeshed in the fabric of illness and its attendant disabilites.

So I like to keep the regimens simple, and largely devoid of supplements. Changes are made when patients see me at scheduled appointments.

A word about supplements. Some patients certainly report benefits from a variety of add-ons. Some feel energized from Co-enzyme Q10, which I truly think helps many people. Some swear by teasel root. I may recommend one or two additional supplements but not many. I do not recommend multi-vitamins on a routine basis.

I was reared in medicine with a healthy dose of skepticism regarding vitamins.(I have discussed this before). Vitamin E--the "miracle worker," turned to offer no benefits to heart patients in controlled, published studies. Vitamin C turned out to be potentially harmful to heart patients. It was shown to increase plaque in arteries, increasing the risk of heart disease unexpectedly. Simple chemistry may give us the reason. Vitamin C can exist chemically in a reduced or oxidized form. The reduced form is an anti-oxidant; the oxidized form can be a harmful pro-oxidant. Supplements may not be properly balanced. So I perfer to leave nutrients and vitamins in the capable hands of Mother Nature. I stress a healthy diet with fruits, vegetables and whole grains which gives the body vitamins in their proper form along with the potpourri of photochemicals needed for these nutrients to perform optimally.

A folksy argument I frequently share with patients is something like this: A chronically ill patient is likely to be deficient in a variety of nutrients. This is caused by the illness or chronic infection as in the case of Lyme disease. One can think of such a patient as akin to a gas tank with a hole in its bottom. You keep filling up the tank with gas (supplements) but the tank is perpetually empty because the fuel drains through the gaping hole. Close the hole first--by getting the infection under control, and then the metaphorical tank can become full with the needed fuel.
A case of not putting the cart before the horse.

This does not apply to patients with dramatic deficiencies. And of course, this is just my working hypothesis and I know that most other physicians operate from the opposite paradigm.
My experience tell me that it works both medically and psychologically for my patients.

THREE WEEKS OF DOXYCYCLINE

"Childhood friend's daughter in ICU for two weeks with-- Lyme disease---It is one thing after the next."
Keith Olbermann on health care.

THREE WEEKS OF DOXYCYCLINE.

"I just saved your life (diagnosing Lyme disease in friend's wife)." Larry David.

THREE WEEKS OF DOXYCYCLINE.

"I heard you never get over Lyme disease; I have a friend in a wheel chair; so many people are so sick, its a very scary disease." A patient.

THREE WEEKS OF DOXYCYCLINE.

"I used to function at a high level (computer engineer), now I can no longer do my job" A patient.

THREE WEEKS OF DOXYCYCLINE.

"I have been to 40 doctors. No one ever took me seriously--thank God you are listening to me."

THREE WEEKS OF DOXYCYCLINE.


" I would like to help you--but we have a two tier test--you never had a rash--NIH studies--
IDSA recommendations--and CDC--I can't treat you I might get in trouble--those ILADS, LLMDS are--I don't know, out there--you don't want to miss another "real" diagnosis like fibromyalgia or depression."

THREE WEEKS OF DOXYCYCLINE.

Cipro and Klonopin

A 59 year old patient was prescribed Cipro in 1992 for a urinary tract infection. He experienced a variety of progressive symptoms. These included burning sensations, shortness of breath, fatigue, confusion, chills, sleep disturbances, night sweats, a feeling of alternating hot and cold, ocular problems, increasing cognitive dysfunction, a sensation of electric shocks and many other symptoms. After a long evaluation it was decided that he was suffering with a severe quinolone reaction; he was prescribed Klonopin which he has taken every since. The Klonopin has been effective.

He recently visited my office because he was not feeling well. He had been off Klonopin for 5 months and symptoms were returning. Off the Klonopin recently--he developed: severe fatigue, sleep disorders, tinnitus, head pressure, a sensation of electric shocks, numbness and tingling, joint pain, increased anxiety and hot and cold sensations.

Upon further questioning, perhaps he has not felt entirely normal on Klonopin. He has suffered with stiff fingers, anxiety, periodic weakness in his legs. dry mouth with dental carries and progressive brain fog associated with progressive memory loss. He has written these symptoms off to normal aging.

His wife has been successfully treated for chronic Lyme disease.


An exam showed evidence a stocking glove pattern of decreased sensitivity to pin prick, a loss of vibratory sense and absent deep tendon reflexes in his ankles.


A brain MRI showed non specific, periventricular white matter changes compatible with microvascular ischemic changes. He has no risk factors for this disease.

An initial set of lab studies (lLabcorp) showed: CD57 24, Bb Western blot no bands, Bababesia duncani positive, titer 1:256, all other studies negative. He vitamin D levels were properly balanced. There was no evidence of autoimmune dysfunction or inflammation.


He is an outdoors-man. He lives in a wooded area frequented by visiting deer.

I sent off another Lyme Western Blot to Clongen. (pending)

Many questions remain in this case, answered at this point. Is this truly a case of quinolone toxicity? If so, why have symptoms persisted for 17 years. Are quinolone reactions, at least in some cases, really "Herx" reactions in patients with asymptomatic but disseminated Lyme disease? I have documented such a case in a previous post. He does test positive for Babesia; this suggests exposure to tick borne illness. He has many symptoms and signs frequently seen in chronic Lyme disease. Why has Klonopin, a sedative, been so effective in stabilizing many of his symptoms for so many years, and why does he quickly relapse off Klonopin? The persistence of symptoms 5 months after stopping Klonopin makes withdrawal an unlikely explanation for this phenomenon. Does Klonopin. a GABA agonist in the brain have any positive benefits for some Lyme patients? For now, I have questions, not answers.

I hope the second Western Blot will be telling.

Case of Lyme pneumonitis with suspected resistant strain

See recent post about Lyme resistance to antibiotics.

This case is now much more interesting.

This is the patient as you may recall had neuroborrelios which improved when the patient was given Zosyn for pneumonial

The patient received only a short course of Zosyn in the hospital. She was discharged with oral Levaquin. She went on to develop shortness off breath. Follow up radiographic studies showed a pattern of lung nodules and diffuse interstitial disease. Various diagnoses were entertained, including: sarcoidosis, lung cancer and other better known opportunistic infection.

A brochoscopy was performed to obtain a tissue specimen. The biopsy was negative for the usual suspects with non-specific findings. Slides from the specimen were sent to Clongen Labs. A highly sensitive real time PCR test was positive for Borrelia burdorferi--the agent that causes Lyme disease.

I spoke with the pulmonologist today. He is not familiar with any medical literature supporting cases of disseminated Lyme disease in lung tissue. Lyme may have been a factor in her original pneumonia, but this is not my current hypothesis. Her initial pneumonia was due to aspiration. Perhaps the inflamed/damaged post-pneumonia lung tissue created an environment for the dissemination of Lyme bacteria into the lungs.

I offer the hypothesis that this patient has a resistant form of Lyme. This is why courses of Rocephin and Zithromax have failed. I have restarted Zosyn since it is the drug which has proved effective in the past.

There exists some research data which supports the notion that Lyme can become resistant to antibiotics. One would certainly expect this. Bb has an incredibly complex genomic structure.
It has more plasmids than any other know bacteria. Extra-nuclear DNA in plasmids can recombine with native DNA to create resistant strains of bacteria.

This is an exciting case; I hope to keep you posted.

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.

Why BLOG?

As I have said in the past, this BLOG and others are a venue for putting ideas and experiences into the blogosphere for others to consider. My posts have covered many areas of agreement and controvery: mostly controvery. In my mind this is a major the role of this tool. Of course I have meant it to be informative. I learned much from my father. He frequently said outrageous things for the purpose of prodding others into a lively debate: The devil's advocate. If I have "criticized" other LLMDs it must be seen within this context. Please remember that just because something is in writing does not mean it is true.

This war over Lyme disease has been fomenting long before I came into the picture.

A belief in even the possibility of chronic Lyme disease would next exist except for the pioneering work of many who have bravely challenged the establishment, putting their careers and reputations on the line.

I have never intended to impeach the reputations of Burrascano, Jemsek, Jones, Stricker, Singleton, Fry or countless other physicians or scientist involved in this field over a period of 3 decades.

I personally do not know many of the great physicians and scientist involved in this field.
Many of my comments are based on information obtained only indirectly.

I have worked alone in my small corner of the world. By luck alone my office is a stone throw away from Clongen lab: I now have a colleague who helps me contemplate some of the mysteries associated with this illness.

Many clinicians have developed ideas and therapies which have been EFFECTIVE, even though the exact mechanisms were not fully understood by the clinicians at the time. Unable to get attention from mainstream medicine/science many "LLMDs" have functioned independently without the benefit of consultation with others. For example, the small round gram negative bacteria swarming in the blood of so many patients may be the labaoratory equivalent of the BLO described by Dr. Burasccano. The diagnosis was made strictly on clinical grounds. It was Fry labs who first put a face on this organism, giving it a name.

I have tried to the best of my ability to confine many comments to that which I believe has a factual basis supported by evidence of some kind. Much I have written has been editorial: opinion and conjecture; and I hope this has been made clear along the bumpy road.

Lyme disease is now Lyme-Borreliosis-Complex. It is a new and emerging disease. Much remains enigmatic. In essence all I have done is thow my hat into the ring.

I appreciate positive AND negative comments posted here. We are all learning and I suspect we will continue to do so for years to come.

Antibiotic resistance: Wet mounts re-visited: IV Flagyl

The Bb genome has apparently been sequenced at the Craig Ventnor Institute in Rockville, MD.
The project took an extraordinary amount of time. The genetic structure of Bb unexpectedly complex.

Resistance: It is hard to know if Lyme spirochetes are resistant to antibiotics or not. There is no way to culture the bacteria and test for this. It is known that in vitro (in the test tube) a germ may appear resistant to an antibiotic, but when the antibiotic is administered at super high doses it is able to kill the organism. This begs the question: Do some patients only respond to Rocephin when it is administered at high doses for prolonged periods of time?

Recently, a patient of mine who appeared to have intractable Lyme neuroborreliosis--having failed Rocephin and Zithromax was admitted to a local hospital for pneumonia. In the hospital she was given an intravenous antibiotic called Zosyn. Zosyn is a third generation penicillin with an additional ingredient to protect from the effects of penicillin resistance. Within just a few days the patient had a response which was nothing short of miraculous.

Unfortunately, The only IV antibiotic on the IDSA list is Rocephin. The LLMD list of intravenous therapies for Lyme is expanded, but still limited. Perhaps in jurisdictions which give LLMDs more latitude--- (Connecticut, Rhode Island and California), other IV therapies should be tried.

The incredible wet mount exam: Numerous blood wet mounts of tick borne disease patients have now been studied. Four results have been found repeatedly.

1) Small motile gram negative bacteria, outside the cells are seen frequently. These unknowns may be the BLO, Bartonella like organisms described by other physicians. These bacteria respond to treatment with Bactrim, quinolones like Cipro, Rifampin and other similar drugs.
2) Crescent shaped organisms. These organisms do resemble Toxoplasmosis, which they are not. The seem to respond to therapy based on Malarone.
3) Elongated, larger structures are frequently seen. Very strange. These are thought to be parasites, worms--microfilaria like. These entities seem to respond to Tindamax based regimens. It has been suggested that Ivermectin may be effective but I have little experience here.
4) This is the finding which intrigues me the most at this time. White blood cells are observed with swarms of intracellular organisms. This resembles Ehrlichia or related organisms--but no positive ID has been made. It may be that Zithromax and Rifampin are effective here. I have just begun to do before and after analyses.

In many patients with neuroborreliosis syndromes the contribution of the BLO is very significant and must be considered. I apologize for old entries in which I questioned this issue.
One problem is that many non ill patients also show swarming gram negative bacteria in the blood as seen in some healthy controls. Here, clinical judgement rules the day.

Revisiting an old patient. Two years ago a patient with terrible neuroborreliosis was succesfully treated with a combination of first IV Rocephin followed by the addition of IV Zithromax and finally IV Flagyl. According to his recollections it was the IV Flagyl which helped him dramatically improve. Both oral Flagyl and oral Tindamax had not been helpful. This patient stabilized on long term oral antibiotics. After some time he was "lost to follow up." He stopped all antibiotics.

He has now returned with a full relapse of florid neuroborreliosis. He has been treated the same way. Rocephin during the entire course--Zithromax adding for a second phase of the course --and finally IV Flagyl added to the mix. He has improved with the first two drugs but is only 60% better after three and on half months. Today I ordered the Flagyl. He told me: " Doc, now I am going to turn the corner." I hope so. I have seen this result in other patients as well. The Flagyl is administered as a once daily dose of 500mg.