Lyme Disabily Victory in MD

A patient worked for Montgomery County inspecting Dams. She got Lyme disease, a very bad case with neuroborreliosis and all the trimmings. She was awarded temporary disability on the basis of this diagnosis. The county lawyers refused to continue ongoing disability. They sent her to an Independent Medical Examiner, an infectious disease doc of the IDSA, who sent a report claiming she did not have chronic Lyme disease and was not disabled. The patient has severe cognitive dysfunction, which has improved a little with oral antibiotics. She has an abnormal brain MRI showing white matter disease and she has a markedly positive Lyme serology by IgeneX. I wrote a detailed report to the county disability judge discussing the Lyme disease controversy as it now exists and how it affects this patient. Today I saw his judicial order. The patient is to receive full disability payments, a SPECT scan and a neuro-psychological evaluation. These are things which the county had refused to allow until this point. The judicial system in Montgomery county MD has said that chronic Lyme is real, that it may be a legitimate workers comp issue which can cause serious disability deserving of compensation. This may be a legal precedent which can impact on future cases.

Parkinson's

I have a patient who developed frightening symptoms of Parkinson's disease while on anti-Lyme therapy. I took her off antibiotics and she got better. By the time she saw the neurologist she was better so he called it psychogenic. She was then able to tolerate lower doses of antibiotics with the symptoms returning. Michael J Fox got Parkinson's after a bout of Lyme disease. I have several other patients who have developed Parkinson's, at a young age, apparently from Lyme disease. I have found that treatment is of little help. Patients may stabilize but they do not improve once the disease has progressed. Parkinson's is associated with damage to a part of the brain called the substantia nigra in the basal ganglia, a deep part of the brain's white matter. Once the damage is done the disease is permanent. Apparently if the disease is treated very early, as in this case, Parkinson's may be prevented. Comments are welcomed.

CPN and Fibro

The go to CPN doc is Charles Stratton at Vanderbilt. His protocol: Amoxil, Doxy, Zithro, Flagyl and Rifampin, INH takes 2 years. The INH is toxic to the liver. I think, based on my experience that: Amoxil, Cipro, Rifampin and Flagyl may work. I use lower doses. Titers come down and Fibro symptoms may improve. Low dose Cipro has generally been tolerated but requires close watching. Has anyone had a response to similar combinations?

Samento

I want to keep an open mind. Some patients claim that this works very well. Some patients use it by itself and others use it as part of an herbal protocol. Two different protocols are described by Cowden and Buhner. Some claim it is more effective than Cats Claw while others say it makes no difference. In my experience it has not been very effective. But I may be only seeing patients who are very ill and have failed non-traditional approaches including herbal therapy. I welcome feedback from patients who have a positive or negative response to this therapy. I have noted that the FDA has sent a nasty letter to a company who promotes such products. The manufacturers are not allow to say that these products treat any specific disease. Thanks

Am I Lyme Literate?

I have been accused of not being Lyme literate by a lay person who has her own web site and blog. She feels I am misleading people. I don't know if it is appropriate to defend myself; but like most physicians, my ego pushes my in this direction. She claims that Lyme is transmitted by breast feeding. This makes no sense to me and I have seen no scientific evidence to support this. Lyme can not be found in body fluids and it not transmitted by the gastrointestinal tract. Infants who have Lyme probably got it through the placenta. There is science to support this. She claims that samento is a crucial part of Lyme treatment. Many patients who come to me have used this extensively. It may have modest benefits but has not cured anyone. I have no problems with patients using this as an adjunct, but to date there is no science to support its use. Mr. Buhner has written a beautiful book about Lyme. The science of Lyme infections is well described and documented. He offers herbal therapies, but no science to back up the use of these therapies. It has been reported that the Cowden herbal protocol helps Lyme patients. This is a difficult and expensive therapy. Again, it lacks scientific support. The Top Ten Treatments by Rosner is filled with mistakes and misinformation. The Marshal protocol refutes the importance of treating non cell wall, intact spirochetes. Marshal is a PhD, not a MD. His treatment was initially used for sarcoidosis not Lyme. He claims only a 30% success rate with Lyme. Plaquenil is not an anti-cyst drug as stated. The vitamin C and salt therapy is questionable and has helped very few patients. The same can be said of the rife machine. Dr. Burrascano is without question one of the best Lyme docs. he recommends a plethora of supplements. Apparently he cured himself without taking these supplements and used high doses of Ceftin. I can't list all the supplements here but they include: alpha lipoic acid, co-enzyme Q10, Carnitine, magnesium, multivitamins, methyl-cyocobalamin(which is an expensive form of vitamin B12) omega-3 supplements and a host of other supplements. If you take all these things you end up taking a medicine chest full of supplements. There is no scientific evidence to support any of things. I, my patients and family members have recovered without these things. To the best of my knowledge, Dr. Stricker and Dr. Jemsek do use these things and they are arguably the best Lyme docs in the country. I see many patients who have had their fillings removed; been tested for every parasite in the book; had saliva tests for cortisol levels; been treated with a plethora of herbs and alternative therapies, who ultimately come to me because they have not gotten better. I disagree that stage three Lyme is not curable. Many stage 3 Lyme patients have been cured or at least put into long term remission. Chronic Lyme is still outside the mainstream box. I use therapies which have some proven benefit or least are based on clear logical principals encompassed both in the art and science of medicine. Some patient have been treated with what I consider dangerous therapy like intravenous hydrogen peroxide and colloidal silver. These treatments have been given by the best known "LLMDs". These same doctors who once used the Marshal protocol now load patients up with vitamin D not understanding the immunology of this compex hormone. I see patients who have not gotten better with other docs and I am willing to take on very difficult patients. I treat patients with severe Lyme and all its known complications. I do not claim to be the best Lyme doctor. I welcome positive feedback. My intention is to write a patent's guide to Lyme from a physicians perspective. I like questions because they help me in this regard. Patients should be aware that there are as many opinions as their are LLMDs. Lyme patients need to become Lyme literate themselves and seek a variety of opinions and opinions. I have no agenda in writing this blog. I find it therapeutic and I hope it helps some patients. During an office visit I do have time to cover the vast the details of the science and controversies of Lyme disease. I hope this forum helps with the educational process. I also welcome feedback from patients which I find very helpful.

Stiking out in Germantown

A patient has had Lyme for 20 years. She has tried everthing both conventional and alternative. I got more aggressive. IV Rocephin 3 months: no response. We will not give up. I am stubborn. She is positive for CPN. We will treat with the Stratton protocol. We will retreat Babesia. We will look for HHV6 and consider Lamictal. Actually she is getting a little better. Shes started going out and taking dance lessons. There are very difficult patients. Some are easy. For some reason I like the challenge of the tough ones. If I keep trying everything believing that somewhere a break through will occur. I welcome input from patients who have improved from what seemed like hopeless Lyme. I learn from patients experiences. Thanks.

Miracle in Germantown

I have a patient with the a horrendous case of Lyme. Neuroborreliosis and all the trimmings. She has had every intensive therapy known. In addition to Lyme she tested positive for Babesia. I have sent her to two other expensive Lyme specialists whose names I will not mention. One doc said we needed to control her depression before he could begin treating her Lyme Disease Complex in earnest. She was on a long list of drugs. The list could fill up an entire page. He put her on the mood stabilizer Lamictal to help with mood swings. She became completely delirious and confused. I took her off this medicine as well as several others.She was the worst she had been in years. She couldn't afford to go back to this doctor. I started her back on Zithro and Mepron for Babesia. She became dehydrated with possible acute kidney failure. She was admitted to the hospital for two days of intravenous fluids. Her labs returned to normal. She then came into my office two days later. She was almost 100% better. Her cognitive dysfunction, fatigue, and pains had all disappeared. She had new found energy. My staff was shocked when she drove herself to my office today. She tells me a lot of people were praying for her. My theory is that the Lamictal killed Human Herpes Virus 6 and that she Herxed. When the Babesia was re-treated she was now able to respond to it. Her theory that it was because of divine intervention is just as valid as mine. Unbelievable.

Biofilms

Dr. McDonald presents evidence that Lyme bacteria create biofilms. This is a process by which colonies of bacteria organize in the intracellular matrix and are protected by a complex biological matrix. This makes bacteria very difficult to eradicate and resistant to antibiotic therapy. Biofilms are well described with other bacteria such as dental bacteria, pseudomonas and E. coli. These biofilms were seen in brain tissue. This may be why neuroborreliosis is so hard to cure and why it causes dementia. The evidence for chronic persistent Lyme keeps growing. Let me again summarize it: Animal models show that it persists after intensive antibiotic therapy. The animals have been sacrificed. Lyme organisms change their surface proteins to avoid the immune system. Borrelia acquires surface proteins from normal endothelial cell to disguise itself and avoid the immune system. It attaches to intracellular proteins out of reach of the immune system. It drills through tissues and stays out of body fluids to escapte the immune system. It grows very slowly making antibiotics relatively ineffective. It morphs into L-forms and becomes as intracellular. It criples the Th1 helper T cell response which would kill it by dysregulating vitamin D. It lowers the natural killer T cell response by an unknown mechanism. A controlled clinical study at a major academic medical center now shows that neurological Lyme gets better with IV Rocephin but symptoms rapidy recurs when antibiotics are stopped. The improvement returns when the antibiotics are started again. It forms spherical cystic/spore forms which are not killed by immune responses and are resistant to most antibiotics. We now have evidence that it forms biofilms. The IDSA still says there is no evidence that Lyme can persist after a short course of antibiotics. Medical boards are punishing doctors who do not follow discredited IDSA guidelines.This disease is disabling and killing people while a few pretigious doctors, whose best days are behind them refuse to consider the evidence.

Under Our Skin

I apologize for not saying much about this documentary.
It is an absolute must see. Please order your copy. Show it to friends, family and anyone who has or might have Lyme disease. I commented on the doctors in the film. Most patients do not Herx as badly as the woman depicted in the film. The human side, the politics, the public health disaster are very well depicted.

Mycoplasma fermentans

Mycoplasma species are tiny cell wall deficient intracellular bacteria which have been well known for many decades. They are a common cause of bronchitis, pneumonia and other respiratory infections. They have been shown to cause a sexually transmitted infection of the urethra. Usually these germs are transmitted via the respiratory route like Chlamydia pneumonia. However, certain species of Mycoplasma have been found in the blood of tick vectors, including Ixodes. This raises the possibility that Mycoplasma may be a tick borne infection or co-infection. A published study found Mycoplasma fermentans DNA in a group of seven individuals following a tick bite. All had typical Lyme symptoms including: fatigue, muscle and joint pain, and cognitive dysfunction. Non tested positive for other tick borne infections including Lyme; and all got better after a course of antibiotics. Repeat blood tests showed that the Mycoplasma germ was no longer in the blood stream. The same germ has been shown to induce arthritis, have an association with chronic fatigue syndrome and an association with Gulf War Syndrome. There is not much research about the treatment of this specific microbe. This species of Mycoplasma is a recent discovery. It seems to respond to many Lyme mediciations, including: Doxycyline, Minocin, Biaxin, Zithromax and Cipro. Patients treated for chronic Lyme would always be covered for this germ. My research does not show that it is difficult to eradicate like CPN. However, the use of long term Minocin and Doxycyline for arthritis may indicate that it is indeed difficult to eradicate. The importance of this bacteria in the Lyme syndrome is not yet know, but it is certainly an aspect of the poly-microbial mix seen in these patients.

Ceftin: tastes like sh..

Brand Ceftin was a blue coated tablet which was just fine. These days all you get is a white generic tablet which starts dissolving as soon as it hits your tongue. It is horrible tasting. I now remember why I switched so many people over to Amoxicillin which always comes in capsules.
Ceftin might be a slightly better Lyme drug for many patients. You can request the brand product or you can quickly take the pill with fluids in hand. Once it dissolves on the tongue the taste seems to persist no matter what you do. Of course Flagyl and Biaxin are not great tasting but Ceftin is the worst. If anyone knows how to make it taste better please send a reply.

Do You have to take Flagyl?

Flagyl tastes bad and you can't drink alcohol with it: two negative. It causes a significant Herx. It is thought to only kill Lyme cysts. The alternative drug is Tindamax. Many internet entries claim that Plaquenil also kills Lyme cyst. I have found no substantiation of this claim. Some patients respond great to Flagyl while others do not. Again, Stratton has found it to be a critical part of his CPN protocol. One could argue that cysts convert back to the other active forms and that long term therapy against spirochetes and L-forms is adequate. My experience is that Flagyl is helpful. Spirochetes bathed in Rocephin or Doxycyline have been shown to convert to the cystic form within hours. I don't want to give the Lyme any place to run to. Have meds on board which can kill any of the three forms. I will reiterate that pulses doesn't make sense to me. This allows for periods of time for the accumulation of large cyst loads. Once daily Flagyl, 250 mg or 500mg is adequate. (Don't tell anyone, but most patients who take low dose Flagyl in the morning seem to be able to drink at night without throwing up). Cysts show up in the brain tissue of people with brain Lyme. So I can't say it is they are not disease causing. Nobody really knows. I don't use Flagyl in early therapy because patients Herx too much. It should work as well orally as it does IV. Although there is no evidence based research to support this; many of my worst patients with neuroborreliosis have responded remarkably well when IV Rocephin, Zithromax and Flagly are given. Another plus of Flagyl is that it treats C. diff. Any patients with a history of C. diff, pseudomembranous colits, are routinely given Flagly to help prevent recurrences of this potentially serious infection.

Why does Rifampin work so well?

Rifampin is a relatively weak antibiotic. It is tremendously helpful for many patients. It works by a unique mechanism. It inhibits bacterial RNA synthesis. In the past its primary uses have been as an adjunct for TB and meningitis prophylaxis post exposure. It is known to kill Lyme, but is relatively weak compared with other antibiotics. Studies show that it a Doxycyline alternative for Erlichia infection. It is effective against Bartonella. Dr. Stratton has shown it is a key part of his regimen for CPN. Is it killing co-infections? Is it synergistic with other antibiotics as in the treatment of TB? I don't know. More research is needed. It seems to be an extremely helpful drug when used as part of a multi-drug regimen for chronic Lyme disease or Lyme Disease Complex, as some call it. Typically it is added to regimens which include Amoxicillin or Ceftin plus Biaxin or Zithromax and Plaquenil or Doxycycline/Minocyline. Flagyl is an option. I don't tend to use Rifampin initially because most patients respond without it. For difficult cases it has proved to be very helpful. Comments are welcomed.

Does Diflucan Kill Lyme?

This is an interesting topic. I tried to do some research but came up with nothing convincing. There are many claims in cyberspace that Diflucan, an antifungal which targets Candida is an effective therapy for Lyme. What is true is that many patients on chronic antibiotic therapy develop Candida infections as a complication of long term antimicrobials. Fungi or yeast act in an opportunistic way. The normal flora of bacteria are gone. The yeast which are biologically weaker move in when they see the "no vacancy" sign. Yeast infections can cause vaginitis, thrush-an infection of the oral cavity, and infection of the esophagus which can cause problems swallowing. Some Lyme literate MDs think that yeast infections exacerbate Lyme symptoms. It is known that yeast infections can exacerbate MS symptoms. Some doctors think that chronic yeast infections make people sick. My opinion is that the presence of a chronic yeast infection is an indicator of poor immune function. Chronic yeast infections are not a cause of chronic disease; rather they may be a result of chronic illness. I have a patient with Lyme/MS who rapidly deteriorates when she stops Diflucan. There is a reported mechanism of the benefits of Diflucan on Lyme. It claims that Diflucan inhibits an enzyme in the liver which helps eliminate drugs and toxins: the P450 enzyme. The claim is that Lyme bacteria have a weak P450 system. Because of this, antibiotics cannot be eliminated and are more effective. This argument makes no sense to me; I am not buying it. Diflucan has a role. I don't know what it is. It should be used judiciously since it has been associated with liver toxicity. More research is needed in this area. At this point I have an open mind about it and would like to hear comments from patients.

Wikipedia and Lies

Wikipedia, the free on line encyclopedia has had excellent articles on Lyme disease. The section on Lyme microbiology shows evidence of the chronicity of the disease. The main article on Lyme treatment only discusses the now discredited IDSA guidelines. A previous wonderful section called "Lyme disease controversy" showed the IDSA guidelines and how the compared to the evidence based ILADS guidelines. This entire section has been edited out. Someone is trying to revise history and science. Shame on you.

Lyme antibodies revisited

The ELISA test for Lyme is a good test. The problem is that the cutoff for a positive reaction is set too high. This technology is very good. In this test an enzymatic reaction causes a color change when antibodies react with antigens(Lyme proteins). The amount of color change is transposed into an index. The cutoff point for a positive ELISA was set high when it was discovered that nearly everyone reacted to Lyme on the assay. It was assumed that false positives were occurring. The set point for a positive reaction was decided by a committee in a somewhat arbitrary fashion, who at the time assumed that Lyme disease was rare. Some Lyme antibodies are non-specific and cross reactive. Still the ELISA was supposed to allow for false positives which could be sorted out with the Western Blot test. Positivity of the Western Blot was also arbitrarily set based on X number of bands being positive. This makes no sense. Non-specific bands should be excluded. Bands which specifically react to outer surface proteins of Borrelia burdorferi should be sufficient to make the diagnosis even if only one band is present. Bands 23, 31, 34, 39 and 93 are so specific that a reaction to any of these bands should be considered a positive Lyme test. Indeterminate bands, especially when they occur on several of these specific locations should also suggest a positive test for Lyme. This brings us to the C6 peptide test. This is an ELISA test which correlates with specific reactivity of a very, very specific outer surface protein on the Lyme bacteria. There are virtually no false positives here. The cutoff has been set so high that the test is worthless based on the standards set by the manufacturer. It is interesting that Gary Wormser, the chief critic of chronic Lyme is financially connected to Immunetics, the company which developed this test. There is no reason for any non zero value other than exposure of the immune system to the spirochetes which cause Lyme disease. In fact C6 peptide indices of 0.2 to 0.3 are typically seen in patients who have positive Western Blots even by CDC surveillance criteria. Patients who are treated for Lyme frequently sero-convert. They develop a greater antibody response after antibiotic therapy. By the same token, the C6 peptide index frequently doubles after the patient receives therapy with antibiotics. The standard of a C6 index of greater than 0.9 is ridiculous in my experience. Any level greater that zero is suggestive. Values greater that 0.3 are reliable in confirming the diagnosis. To date there are no published studies comparing C6 index levels to Western Blot positivity. When this data is published it will turn out that C6 peptide index for Lyme disease will be very useful. Is often said we need a better Lyme test. We actually have a better test, we just need to learn how to interpret the results in a meaningful way.

Review of "Under Our Skin"

Great documentary. It shows the human side of Lyme. It doesn't talk much about treatment.
Dr. Donata, an infectious disease specialist is one of the heroes of the Lyme movement. Dr. MacDonald's work is exciting. Dr. Burrascano is a great guy; too bad he doesn't see patients anymore. He went through a lengthy board investigation in NY, eventually won. It took the wind out of his sails. Dr. Jemsek went bankrupt and opened in S. Carolina. I can see why his fees are so high. He is too expensive for most folks. Dr. Jones is a great guy. He is still practicing at 80 and trying to raise money for his legal defense. My patients get better. If you have severe Lyme you need an aggressive doctor who is familiar with latest treatments. Get the movie and show it to family and friends. Lyme can be helped in 90% of the cases. Don't give up.

Patient with Lyme and Guillan Barre

Guianne Barre syndrome acquired notoriety in 1976 when it was associated with the Swine flu vaccine that year. It is a rare neurological syndrome. It is a scary disorder. Patients have a progressive paralysis of the lower extremities and it "ascends" up the trunk. At times it can involve the respiratory muscles requiring the use of a ventilator. Usually it is a post infectious disease and improves spontaneously over time. It is due to an acute demylinating peripheral neuropathy which is acute and sever. It is probably autoimmune in nature. Circulating antibodies or antibody/antigen complexes attack the nervous system causing a rapid loss of the protective myelin sheath of peripheral nerves. Patients have a flaccid paralysis with a loss of deep tendon reflexes. This distinguishes the disease from a motor neuron disease such as ALS or MS. A large number of viral infections as well as bacterial infections have been associated with the disease. Normal treatment is intravenous Ig (immunoglobulin g) derived from a large pool of patient sera, or plasmapherisis, a filtering of the blood which removes immune complexes triggering the disease. The disease is self limited and improves over time. In this case a middle aged gentleman in good health presented with an acute flu like illness associated with fever. Over a period of a week he developed progressive weakness and was diagnosed with Guillan Barre. The spinal fluid showed inflammation and was positive by PCR for Lyme. Note here that it is unusual to get a positive Lyme PCR of any fluid. Lyme antibodies, either C6 peptide or Western Blots are more likely to be positive. Non Lyme literate doctors will not order these tests. This patient was brought to my office after hospital discharge because the family found that the other treating physicians were mystified by the case. Lyme is a factor here but I wonder if there was not another inciting viral infection as well. Currently the patient is being treated. Unfortunately a culture of the spinal fluid revealed an unusual fungus. I am sure this is a red herring, a false positive contaminant. His physicians have placed him on a powerfull and toxic antifungal drug which worries me. I have spoken with a neurologist who is bright and familiar with the causes of this disorder. The patient had an allergic reaction to IV Ig (herx?) and will be treated with plasmapherisis as well as with antibiotics. This case is interesting because it shows one of the myriad and unpredictable Lyme associated neurological syndromes. I all neurological syndromes of the peripheral nerves, brain or motor nerves, Lyme needs always be considered as a possible cause.

Fry labs and hemobartonella

There is a sudden intreest in something I wrote 12 years ago.

The information is based on opinions and science.

I do not with to pick on a particular  laboratory. Mainstream science and medicine have abandoned our quest to learn more about chronic tickborne illness.

Some laboratories offer experimental tests for a charge.

Please look at the small print:  The test is experimental and not to used for the diagnosis of any disease.

Let me correct the record.  The test in question is the blood smear exam and photomicrographs which report hemobartonella.  At this point I have 12 years more experience looking a blood smears.

There are a number of stains in use.  The Wright-Giemsa is used in general hematology, the Giemsa stain, which I use is generally used for "blood smears" for red blood cell parasites (Babesia, Malaria sp). A very simple methylene blue stain is used by veterinarians looking for feline blood pathogens. (I see tons of bacteria with this stain). Labs may have other procedures.

Hemobartonella are found in cats, not people.

Human blood and Cat's blood are quite different. The feline immune system is different. People, dogs and horses suffer with Lyme and Cat's are generally immune.

At one time it was believed that most compartments in the body are sterile, free of bacteria. We now know this to be untrue.

Cats may be infected with various bartonella species, including B. Henselae, a cause of cat scratch fever and it is a tickborne pathogen.

Bartonella are intracellular bacteria. They live only within  cells. Their home is the cells that line the internal surface of blood vessels (endothelial cells).  Transiently, with fresh infection, the bacteria are transported by red blood cells and may be found on a blood smear. With chronic disease, as in the case with the typical Lyme patient with coinfection, Bartonellae are entrenched inside their home endothelial cells and will not show up on a blood smear.

The exception to this rule is B. bacilliformis which causes a rare, fulminant and frequently fatal form of bartonellosis called Carrion's disease incurred by the bite of sandflies in Peru and a number of other South American countries. This is an acute  deadly (90% mortality rate) not a chronic disease. 

We do see bacteria adherent to the outside of red blood cells at times. They could be part of the blood's normal microbiome, a contaminant or something else. With certain stains more of these bacteria are seen. The identity of these "mystery bugs" could not be uncovered with 16S RNA sequencing methods.

Deep gene sequencing is now available. It uses state of the art, advanced RNA/ DNA sequencing of all the organisms present in a blood sample.  I have seen reports with various obscure species.  I have not seen a report of a Bartonella species. Not many of my patients have had the test and currently I do not recommend it.

Sometimes it looks like a red blood cell is  teaming with bacteria.  This red blood cell is a reticulocyte, an immature red blood cell. The finding can be misinterpreted.

Bartonella is difficult to diagnose with any currently available test.  Antibody levels against B. henselae are frequently elevated, especially IgG.  This tells you the person has been exposed to Bartonella. The chronic Bartonella syndrome associated with chronic Lyme disease is characterized by persistence of bartonella species living within endothelial cells.  Positive antibodies (not usually seen) may suport a clinical diagnosis.

PCR, which finds the organism's DNA has been the gold standard.  Unfortunately, since the pathogen is rarelypresent in blood the test has a very low positive yield or sensitivity.

One lab, Glaxay labs, has tried to increase the yield by culturing a larger sample of blood in an enrichment media before doing PCR.  This increases the yield some but the sensitivity is still low.

A PCR done on a Bartonella associated rash may yield a positive result -- requires biopsy and proper transport of the specimen to a speciality lab.

Lyme, Babesia and Bartonella. Laboratory confirmation is difficult for each and Bartonella is the hardest. 

I understand the desire to have a positive confirmatory test.  Clinical diagnosis is the most sensitive, specific and reliable method available today.

Cipro

The FDA has put out a new warning about Cipro and other related drugs called quinolones.
These medicines are associated with tendon rupture. This is still a relatively infrequent occurrence. Cipro is still a very useful drug. It has anti-Lyme effects and works well against Bartonella, Chlamydia and Mycoplasma. My theory is that it is so effective in killing bacteria that the inflammation in the tendons of Lyme infected patients may contribute to weakening and rupture of tendons. Of course, this is pure conjecture. Cipro may also cause an exacerbation of joint pain and other symptoms. My approach with this drug is start low and gradually increase the dose. If patients develop and increased pain in tendons, ligaments or joints the drug is discontinued. Using this method none of my patients has ever had a tendon rupture. I have observed over time that Cipro may be particularly effective in fibromyalgia patients. This may be related to its effectiveness against germs associated with this condition, including Mycoplasma and Chlamydia species. Others have found that Cipro or its cousin Levaquin have been very useful in cases of presumptive Bartonella. There is confusion here. Studies have shown that serological cross-reactions can occur between Bartonella and Chlamydia. Another popular test from Frye labs, a blood smear for Bartonella, indicates that the bacteria seen could be Bartonella or Mycoplasma. The bottom line is that these drugs work. Please note that Cipro is much more effective against Lyme than Levaquin.

Another lab test

Chronic infections such as Lyme disease and autoimmune disorders are associated with circulating immune complexes: antigen( foreign protein ) bound to antibodies, immunoglobulins.
Normally these are not present in the blood. A test available only at Quest Diagnostics is available to measure this variable. The is the C3d test: CPT 86332. This should not be confused with the C3a test available at Labcorp which measures a form of complement. This parameter may be useful in following the course of the illness. If levels are elevated enzyme therapy such as Wobenzym-N may be beneficial.

What role do viruses play?

In the past my attitude had been that I wasn't going to test for viruses because A) I don't know if they make any difference and B) you can't treat them anyway. Perhaps I was wrong. HHV-6 has recieved a lot of attention. This is Human Herpes Virus 6. This is virus that everyone has been exposed to in early childhood. It is the cause for a common childhood disease called roseola. The CDC considers it an emerging disease. It has two strains, called A and B. The CDC states: "HHV-6 is probably the most neurotropic virus known." HHV-6B has been associated with multiple sclerosis in numerous studies. It has been associated with a host of other disorders, especially in patients with suppressed immunity. This virus has also been associated with chronic fatigue syndrome. The HHV-6 foundation and others report that the oral anti-viral drug Valcyte may be helpful. The disease is hard to diagnosis. A decision to treat is based on high antibody levels and a clinical response to therapy. This drug has the potential for serious toxicity and needs to be monitored carefully. Certainly the use of the medication for CFS, MS and other related syndromes needs to be considered experimental. Of interest is the fact that amantadine, a relatively benign drug used for influenza and parkinson's disease may be effective. And Lamictal, an anticonvulsant commonly used for bipolar disorder may be effective against HHV-6B. If a patient suffers with mood disorders as part of a Lyme disease complex and high titers of HHV-6 are present then the use of this drug might be considered. This medicine is generally safe but needs to be monitored carefully because it has been associated with a dangerous rash. The role of this virus and others needs to be considered, especially when patients do not repsond to therapy. We physcians need to keep in mind the dictum: "First do no harm." But this may be an exciting area of further research and cautious treatment.

Mycoplasma

Add another log to the fire. Many people believe that Mycoplasm bacteria are responsible for many of the symptoms associated with chronic Lyme disease. These are tiny cell wall deficient, parasitic bacteria which live within cell. They are reported to be difficult to eliminate. Long term antibiotic courses of 6 months to 2 years may be required. Many Lyme drugs are effective, including: doxycyline, minocycline, Biaxin, Zithromax and Cipro. These bacteria also have a slow replication cycle and have various mechanisms which disrupt normal immunological functions. They have been commonly associated with fibromyalgia, chronic fatigue syndrome, autoimmune diseases and neurological diseases. The list of possibilities dovetails pretty well with Lyme and CPN related ailments. Most Lyme regiments already cover this bacteria. Perhaps the interesting point is that here is further evidence which supports the underlying paradigm, simply stated: patients are sick with a variety of illness and symptoms; it is frequently related to chronic bacterial infections; patients improve with long term antibiotic therapy. Maybe we don't always know exactly which germ we are treating, but the process is effective.

The Human side

This blog has been very nuts and bolts. I have tried to put a lot of factual information which may be helpful to persons suffering with Lyme disease. Based on the feedback I got from a personal friend suffering with the disease, I feel I have been remiss in addressing the personal toll from an emotional and psychological perspective. Many Lyme patients look relatively well on the outside despite incredible suffering. Others in their lives are frequently unsympathetic and may even suggest the problems are all psychological. This makes everything so much worse. People who are suffering need understanding, love and support. Chronic pain is particularly difficult to deal with. People who have never experienced chronic pain do not understand it. Acute pain is easy. The dentist drills a tooth; it hurts for several seconds and then it gets better. Chronic pain is of a lower intensity, but it never goes away. Sufferers cannot get relief. The psychological and emotional consequences of of this relentless pain are indescribably horrible and are hard to understand unless you have been through it. The medications which treat chronic pain are rarely entirely satisfactory. Narcotics cause sleepiness and mental fogginess. Lyme patients already have brain fog to start with. Patients may be accused of addiction or substance abuse. A wide variety of other drugs may be tried: anti-inflammatories, antidepressants, anti-epileptics and others, but they offer minimal relief. Other modalities such as massage and acupuncture may be tried. These are of some benefit but is not long lasting. The same is true for trigger point injection. Chronic pain and the medicines used to treat can lead to serious depression, mood swings, anger and other psychiatric symptoms. Patients can feel hopeless and even suicidal at times. It is critical that the treating physician listen and be empathetic. It is my hope that many of the treatments discussed in this blog will ultimately alleviate much of this suffering. This is side of chronic Lyme and fibromyalgia which may be the most difficult for many patients. I apologize for not addressing it earlier.

Lyme: What else can it be?

Certainly doctors tend to diagnose what they know. Chiropractors might believe that all symptoms relate to misalignment of the spine. They might treat ear infections and asthma with adjustments. If you are a hammer, everything looks like a nail. Patients with Lyme like symptoms could have a wide variety of illness. They could have other infections like tuberculosis, HIV, chronic hepatitis and others. They could have metabolic disorders like thyroid disease or diabetes. They could have rare systemic diseases like amyloidosis. They can have a variety of cancers. They can have sleep apnea and primary psychiatric disorders. This list of alternative possibilities is by no means exhaustive; it is off the top of my head.

It becomes more complicated when one looks at another collection of disorders: rheumatoid arthritis, lupus, MS, chronic fatigue syndrome, fibromyalgia and others. These disorders are considered autotoimmune or the cause is not known. Lyme doctors may look at this spectrum of disorders as syndromes rather than diagnoses. Lyme doctors will often connect the dots. They will try to see if Lyme is present and whether is might be connected to the various syndromes. Other physicians may treat from a different paradigm. Autoimmune disorders may be treated with potent drugs which suppress the immune system and control the disease but never cure it.

Lyme doctors need to be good clinicians who consider a list of possibilities when they assess patients. There is awful lot of Lyme out there there and most of it goes undiagnosed or mis-diagnosed.

Lyme care: Is it affordable?

Rhode Island is the only state which has specifically passed legislation which prohibits medical boards from disciplinary action against doctors who treat Lyme and tick borne infections with long term antibiotics. It is also the only state which requires insurance companies to pay for long term treatment for Lyme disease.

Fear of board and licensure issues has driven many Lyme docs and their patients underground. This is a significant factor adding to the cost of treatment.

The template of change seen in Rhode Island should become the basis of needed change in many other states.

Political changes must occur so that doctors can treat this illness like other chronic illness, without the fear of persecution from colleagues who are excessively judgmental and ill informed.

I feel that patients suffering with Lyme disease should have access to affordable care.

Physicians must also become better informed about the use of supplements which can dramatically increase the cost of care, and in many cases not be necessary.

Most LLMDs do not participate with insurance plans. The treatment of chronic Lyme patients is complex and requires a great deal of time and effort from the treating physicians. The laboratory evaluation- frequently not covered and the cost of various therapies, also not covered, has in many cases only allowed patients who are well heeled to seek the needed care for what can be a devastating illness.

Cost effective protocols must be established. Perhaps this can be best accomplished by the use of nurse practitioners, physician assistants and others, who can at least aid in the process of educating patients about the disease.

Many changes in the system are needed, to allow access to good care for Lyme and related illness to patients of all socioeconomic groups.

ALS: A patient

I have a wide variety of patients in my practice who come with fascinating stories. Some of these patients have been around the block and recieved treatment by some of the top Lyme specialist in the country. One such patient suffers with Lyme complicated by an ALS like syndrome. The primary manifestations of this disease are muscle weakness and atrophy which without treatment have in the past usually been progressive and fatal. This patient was formerly treated by Dr. Martz, the physician who himself was cured of Lyme induced ALS and had created a clinic to specialize in this disorder. Unfortunately, Dr. Martz closed his clinic for health reasons unrelated to Lyme. His patients have been scattered to the four winds seeking out physicians willing to continue their care.

This patient had been stabilized on a combination of IV Rocephin and Zithromax, both used at a low dose. Higher doses in the past had caused brain Herx reactions which exacerbated her symptoms. She also was on Tindamax and Cleocin. The Cleocin had been prescribed by Dr. Jemsek. Dr. Jemsek may be the only Lyme doc in the country who routinely uses Cleocin. He has found this drug to be effective for many patients.

I have made some minor adjustments in her medication regiment and she seems to be improving somewhat. Options may include: Adding Rifampin, gradually increasing the IV meds and a trial of Lithium. A recent publication suggests that Lithium may be helpful in ALS. Interestingly, other sources have suggested that Lithium is helpful with other forms of neurological Lyme disease.

Lyme Documentary

I was not able to see film: was sold out.
The DVD Under Our Skin can be ordered on line from Open Eye Pictures for $35.00.
It gets rave reviews and graphically shows the politics of Lyme and the seriousnes of the disease.
I have ordered my copy. Should be of great interest.