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Monday, June 30, 2008
Alzheimer victims. He has discovered colonies of spirochetes called biofilms. These biofilms help promote the survival of spirochetes in hostile or adverse conditions. In these colonies the spiral form is replaced by cystic forms, granular dot forms and L-forms. Dr. MacDonald does not believe that all cases of Alheimer's ware caused by Lyme disease. However it may be a significant cause of the disease. His web site: www.molecularalzheimer.org shows images of his work and links to his research. Dr. MacDonald has also done work on the vertical transmission of Lyme disease from mother to infant. He has demonstrated Lyme in autopsies of still born infants. This research has tremendous implication and needs to be introduced into the public arena.
Thursday, June 26, 2008
- Changes in mental status per physician exam
- Neurological abnormalities on careful exam: These include: a deviated uvula and or soft palate, decreased sensation on one side of the face, asymmetry of the face, restricted movement of eyes with extreme lateral gaze, hearing loss, deviation of the tongue with protrusion, Hoffman or Babinsky reflexes, decreased sensation to pinprick of the extremities in a "stocking and glove" pattern, a loss of vibration sense in the feet compared with the hands.
- A low CD57 count
- Some Western Blot bands which are positive or indeterminate on an IgneX test, in specific double asterisk locations
- A Lyme C6 peptide antibody index which exceeds 0.1
- Antibodies for co-infections such as Babesia, Ehrlychia and Bartonella
- Elevated markers of inflammation, including: sed rate, CRP, C3a and C4a
- Mild elevation of markers for auto-immune disease including: rheumatoid factor and ANA
- Low or borderline low vitamin B12 and folic acid
- A reversal of vitamin D levels with low vitamin D OH 25 and high vitamin D 1,25
- An abnormal brain MRI showing non-specific white matter disease
- An abnormal brain SPECT scan show changes in blood flow in the brain
All of my chronic Lyme patients have some combination of the objective markers for the disease as listed above. If one only considers CDC surveillance criteria as objective confirmation, then I believe more than 90% of cases will be missed. The testing is complex, expensive and cumbersome. It is only indicated when there are clear cut symptoms which suggest the diagnosis of chronic Lyme disease.
ILADS states that these symptoms may present without objective markers. Based on my experience this is not true. I believe that an expanded list of objective markers shows some abnormalities virtually in 100% of cases. In fact, a complete absence of objective markers would lead me to doubt the diagnosis of Lyme disease.
Wednesday, June 25, 2008
This would affect bones and muscles, not joints, if it were to occur. Children without symptoms should never be tested. Remember two things: testing is very difficult, controversial, and unreliable, and when patients are treated for Lyme disease, the treatment is continued until symptoms resolve. Someone who is without symptoms should not be treated no matter what the tests show. There is no way to prevent the appearance of future symptoms by treating a positive test. So testing people without symptoms is without benefit and could be potentially harmful if children are treated when it is not appropriate.
Tuesday, June 24, 2008
Patients are instructed to take probiotics with the regimens. I typically recommend a probiotic complex with Acidophilus, such as that found at Whole Foods, one or two tablets twice daily. Initially I like to see patients back in one month. A Herxheimer reaction is expected and this is explained to the patient. If diarrhea is an issue further probiotic coverage with Sachromyes is useful. If muscle pain is prominent enzyme therapy with Wobenzym-N may be helpful. If cognitive issues are prominent a bile acid resin such as Questran one pack twice daily or Welchol three tablets twice daily may be added. If Vitamin D toxicity is a major issue avoidance of the sun and dairy products is recommended and Benicar 20 to 40 mg may be added. Patients are followed at various intervals to assess progress. When the patient is much improved Flagyl is added for cyst coverage. I typically prescribe 250 to 500 mg once daily and may increase the dose to twice daily. Patients are treated until symptoms resolve 100% and then continued for two additional months. If Babesia is strongly suspected by serology or clinical symptoms which sound malaria like, or when the patient fails to respond to treatment as outlined above then treatment is switched to focus on this co-infection. The best regiment is Mepron 750 mg twice daily with Zithromax 600 mg daily. This is continued for at least 3 weeks and for no longer than 4 months. Yeast infections which occur secondary to antibiotics are treated with Diflucan 100 or 200 mg daily for several weeks. Ehylichia infections are treated with Doxycyline as outlined above for two months. If it does not respond well Rifampin 300 mg daily is added. If Bartonella is clearly present I treat with Cipro 250 mg to 500 mg twice daily for two months. Bartonella should also respond to other drugs including Zithromax and Rifampin. At times adding Rifampin to Lyme regiments as described above may be helpful. When high titers for Chlamydia pneumonia are present I combine Amoxicillin with Doxy or Zithro with Flagyl and frequently Rifampin. If patients have severe disease with significant brain involvement I use intravenous antibiotics. Intravenous antibiotics may also be considered when patients respond poorly to 4 to 6 months of oral antibiotics. Typically I prescribe Rocephin 2 gm daily for at least 3 months if possible. I will continue Zithro, Doxy and Flagyl orally if the patient is taking these antibiotics. When patients are allergic to Rocephin I sometimes use intravenous Zithromax 500 mg daily. Another treatment is intravenous Primaxin. I have not used it since is requires multiple daily dosing. Another drug which may have good activity for Lyme is Cleocin, Clindamycin. Some physicians have used it intravenously and orally. It also has some activity against Babesia. So far I have not used this drug either. It is associated with severe diarrhea, Clostridia difficile. This outlines the general process of treatment. It corresponds roughly with ILADS guidelines and methods used by many ILADS affiliated physicians. I have found that overall the treatments above are effective in the vast majority of patients. The duration of treatment varies tremendously. Some patients may improve after 6 month; most need treatment for between 18 months to many years. The best metric for deciding when to stop therapy is patient symptoms.
Monday, June 23, 2008
Horizontal transmission refers to person to person transmission of an infectious disease. Some believe that Lyme may be sexually transmitted. I believe this is false. Syphilis is transmitted via an open sore on the skin, a chancre with spread of the spirochete through the thin skin or mucous membranes of the genitalia. Lyme generally lives deep in tissues. The rashes which may have active spirochetes near the surface occur on the extremities and trunk. It is nearly impossible to find Lyme bacteria in any body fluids. Other sexually transmitted organisms are present in blood and body fluids. This is not the case for Lyme. Lyme DNA has been shown to be excreted through the urinary tract. After an antibiotic challenge urine PCR testing for Lyme DNA may be positive. This does not mean that intact viable organisms are present in genital secretions. In addition, there are specific factors in the tick bite and in tick saliva which have been shown to be important for infection to occur. Other insects like mosquitoes and flies may be infected with Borrelia, but there is no evidence that bites from these insects transmit the disease to humans. Lyme has a difficult time penetrating the skin barrier. But once it is in the body it has the ability to easily spread to tissues throughout the body. This is why vertical transmission makes sense and horizontal does not.
Thursday, June 19, 2008
A patient who is using narcotics appropriately may develop physical dependence. This means that withdrawal symptoms will occur if the medicine is abruptly withdrawn. In this case the dose of medicine needs to be slowly reduced. This should not be confused with addiction which is a psychological disorder. Pain medicines are available in a variety of forms and doses. I will not elaborate further in this Blog. I do feel it is important to have pain managed. This does not cause addiction, except in very rare cases, and is very important in the healing process.
What I am most concerned about is a disorder called sleep apnea. Sleep apnea is more common in Lyme patients in my experience. It is classically associated with obesity, snoring and fatigue. But these signs may be absent. Many Lyme patients have neurologic dysfunction of the palate and uvula which may contribute to this disorder. In addition, brain abnormalities of Lyme may be a contributing factor. Sleep apnea is mostly peripheral, due to floppiness of the soft tissues in the back of the throat; but it may also be central, due to brain dysfunction. Patients with sleep apnea have severe fatigue, a symptom commonly reported in Lyme disease. These patients also have cognitive difficulties which may be similar to those seen in Lyme. Patients with sleep apnea have been shown to have abnormal SPECT scans with decreased blood flow to the frontal lobes of the brain. This is associated with poor executive function. This creates a syndrome which mimics attention deficit disorder, a finding which is also common in Lyme patients. Patients who are chronically deprived of deep sleep called stage 4 sleep, associated with delta waves on the EEG, electroencephalograph, have been shown to develop diffuse muscle pain which resembles fibromyalgia, another common Lyme syndrome. Many researches have described fibromyalgia as a syndrome related to a sleep disorder.Obstructive sleep apnea occurs when patients enter deep sleep, stage 4 and the airway closes off. The individual is unable to exhale. This may causes a decrease in respiration (hypopnea) or complete apnea, a cessation of breathing. The person has an arousal, of which he is unaware, which puts him in a more superficial stage of sleep and allows the closed airway to open again. The condition is frequently associated with low blood oxygen levels. It puts tremendous stress on the heart and is associated with hypertension and heart failure. The fatigue is profound and may cause day time drowsiness which includes falling asleep while driving. Sleep apnea is also associated with activation of the immune system. Markers of inflammation, including cytokines are elevated in these patients.
Patients with fatigue, day time drowsiness, snoring, hypertension and possibly ADD should have sleep studies. If narcolepsy is suspected another test called a multiple sleep latency test is also necessary. A full discussion of this and other related sleep disorders is outside the scope of this Blog. But I recommend that all patients with these symptoms have sleep disorders excluded as part of their evaluation.
Wednesday, June 18, 2008
99% of practicing physicians misuse the surveillance case definition and are unaware of this law. Mill labs, like Labcorp and Quest provide only the 13 CDC bands. In fact they have thus far been unwilling to provide this missing 15 bands even though the assay contains these values.
It is hard to understand why this information has not been disseminated despite the passage of 5 years.
I hear the new documentary on Lyme disease is very good and plan on seeing it.
Tuesday, June 17, 2008
Monday, June 16, 2008
Co-infections such as Ehrlychia, Babesia and Bartonella are even newer than Lyme. The importance of these infections and the need to treat them aggressively remains an area of much debate.
The tick vectors, Ixodes, are frequently called deer ticks. This is a bit misleading. Adult ticks are frequently found on deer but most human infections are caused by immature forms of the tick called nymphs. The tick itself has a two year life cycle. Larval forms are the size of a dot; nymph forms are the size of a poppy seed and adult forms which are visible, but still very small, may all transmit Lyme disease. It is generally believed that the tick must be in contact with the skin for 48 hours to transmit the infection. But this too is open for debate. In general, the tick bites are not seen. When they are observed it may not be possible to accurately gauge how long the tick was on the skin. For every tick that is seen they may be many more which go unobserved.
Friday, June 13, 2008
After 2 years of treatment she is finally getting much better. What has worked and why.
Best antibiotics: Amoxicillin, Zithromax, Flagyl. Chronic Lyme is probably a factor. Babesia antibodies show exposure to Ixodes, the Lyme vector. Her WBs are borderline. The C6 is elevated in my experience. Patients who test positive for Lyme by WB typically have a C6 index between 0.2 and 0.3. The higher cut off point0f 0.9 (per lab reports) relates only to acute Lyme disease. No one has studied C6 antibody in chronic Lyme. The test is so specific that any level over 0.1 suggests exposure to the Lyme organism. (This is based on discussions I have had with researches who have developed the test- this of course is unpublished) The vitamin D dysregulation favors the Marshall hypothesis that L-forms of Borrelia contribute to this abnormality which alters immune function to favor the intracellular bacteria. The CPN titer is probably significant. I have observed that patients who test positive for multiple bacteria associated with L-forms tend to have more vitamin D dysregulation. CPN has been highly associated with fibromyalgia as well. This triple antibiotic cocktail is relatively effective for CPN. Adding Rifampin may be helpful. I would avoid Stratton's recommendation to use INH: liver toxic.
Other drugs: Benicar has made a big difference. I use it only at low doses, 20mg or 40mg. It helps balance vitamin D. The higher doses seem potentially dangerous to me.
Mepron: It is hard to know if the Babesia infection is active, but a 2 month course of this agent, along with Zithromax seemed reasonable. I asked about recurrent flu like symptoms and got a positive response. I think it helped.
Wobenzym-N: Has been effective in reducing pain.
Questran (Cholestyramine): Has been effective with improvements in cognitive dysfunction.
Gluten free diet: She never got stool test for gluten sensitivity from Enterolab. She tried this diet on an empiric basis. This has made a huge difference in her symptoms.
She has required pain medications during the treatment, but she is beginning to taper off.
Key Points: Fibromyalgia. Lyme, Babesia and CPN infection. Vitamin D dysregulation. Gluten sensitivity. Treatment as outlined above effective over a period of two years.
Thursday, June 12, 2008
She was 24 years old. She already had a history of polyneuropathy, pleurisy, pericarditis, tranverse myelitis, migraines, possible seizure disorder, mysterious movement disorder, gallbladder disease requiring surgical removal and a host of other mysterious complaints. When I first met her she complained of vertigo, numbness of hands, face and the lower one half of her body, headaches and joint pain. Subsequently other complaints emerged including profound fatigue and cognitive deficits. She experienced "brain fog" as well as memory loss and slow cognitive processing. Her initial labs showed positive exposure to Babesia microti, but a negative standard Lyme Western Blot.
Her movement disorder seemed typical of Parkinson's. She had rigidity and tremor. Two neurologist felt it was not Parkinson's disease, but a third agreed with my diagnosis. She responded to drugs used to treat Parkinson's. After treatment for Babesiosis she was treated for chronic Lyme disease with a cocktail of antibiotics. She quickly experienced improvement in memory and concentration, joint pain and numbness and tingling. She became pregnant at the beginning of 2007 causing a disruption in her treatment. During the pregnancy she did well. Even the Parkinson's improved somewhat. After delivery everything quickly got worse. The arthritis, forgetfulness, Parkinson's and fatigue were all worse. Repeat lab testing finally confirmed exposure to Lyme by IgeneX criteria. IV Rocephin was given. She had an allergic reaction to the first dose. It was switched to IV Zithromax. It didn't make a dramatic difference, but over time she showed gradual improvement. She has been continued on cocktails of oral antibiotics over this time. I saw her today and she is moving to Washington state in one month. She continues to have fatigue, which comes and goes. Her Joint pain is better, but it also comes and goes. Her memory and cognitive processes are much better. She doesn't remember how bad it was before. Her husbands states that she is almost back to normal. The Parkinson's is stable and controlled on medicine. She feels well enough to go back to work for the first time in years. The most effective antibiotics for her have been: Ceftin, Zithromax, Flagyl and Rifampin along with Plaquenil. Her Babesia has been treated with Mepron. She has Vitamin D dysregulation and was tried on a low dose of Benicar which was discontinued due to excessive "Herxing." In summary she is slowly getting better in every way except the Parkinsons which is static. All of her problems are related to chronic Lyme infection. I have one other patient who developed Parkinson's disease at a young age along with Lyme disease. Unfortunately, this has not responded when the Lyme was treated. I believe the brain damage is permanent in this regard. She has been unfortunate but is much improved since our first meeting. She will need much continued care in Washington state, for how lonng I do not know. Good luck.
Wednesday, June 11, 2008
The "Lyme Disease Subcommittee of the Maryland Vector-Borne Disease Inter agency Task Force" issued a paper in March 2007. The title was: Recommendations for the Development of a Strategic Plan for Lyme Disease Prevention and Control in Maryland. It lists "challenges" which include: 1) Frequent difficulty in clinical recognition and laboratory assessments of LD, due to absence of typical LD clinical signs at presentation, or presentation with late LD symptoms.
2) Varying approaches within the medical community regarding best practices for the treatment of LD due to the absence of a consensus. 3) PROVIDER RELUCTANCE TO TREAT PATIENTS FOR LD DUE TO CONCERNS ABOUT LICENCING PENALTIES OR ADVERSE LEGAL ACTION. The report discusses both IDSA and ILADS guidelines. It reports that the Maryland Board of Physicians announced in newsletter in 2005 that "it does not target or restrict the treatment of LD."
It is imperative that the general community of physicians become aware of these controversies and recommendations.
Tuesday, June 10, 2008
Monday, June 9, 2008
Doctors are programmed that Lyme is not real by IDSA propaganda topical New England Journal editorials. This has caused an unfortunate backlash.
The following information does not come from ILADS. It comes from the County Health Department. Most Lyme infections are caused by nymph forms of the tick, the size of a pin head. Early symptoms include skin rash which may be multiple. Fatigue. Chills and fever. Headache. Muscle and Joint pain. Swollen lymph nodes. The County website/bulletin goes on to say that some people never develop a skin rash and that the symptoms vary. It also states: "Some signs ans symptoms of Lyme disease may not appear until weeks or years after a tick bite. It list symptoms in late Lyme as including numbness, arthritis, memory problems, fatigue which persist after treatment. It states that: "If Lyme is detected and treated early, symptoms are usually mild and easily treated." It skirts around the issue of chronic or Post-Lyme symptoms, but does not take a stance on the issue (chronic Lyme vs Post-Lyme).
This patient had classic sign and symptom of acute Lyme disease, but it was missed. Perhaps headlines in the Washington Post which state that chronic Lyme doesn't exist per the New England Journal get truncated to, "Lyme disease doesn't exist" in the minds of clinicians.
The CDC has made it clear that Lyme is not to be diagnosed based on their laboratory test which was set up for surveillance purposes only. And even the IDSA admits that the antibody tests for Lyme will not turn positive for 4 to 6 weeks after infection. In this patient the negative blood test was completely meaningless.
Forget about the Lyme controversies. Physicians should be adequately informed so that acute Lyme can be diagnosed and treated properly. Early treatment will prevent most patients from subsequently developing chronic Lyme disease.
Friday, June 6, 2008
Published data from Dr. Fallon and Columbia University from October 2007, show in a placebo controlled trial that long term IV Rocephin makes a difference. Patients were considerably better after 12 weeks. However, all the improvement disappeared in 3 months when antibiotics were discontinued. A repeat course of IV Rocephin was associated with a return of the gains. The suggestion from this study is that very long term IV antibiotics may be the best option for patients with Lyme encephalopathy also called neuroborreliosis or simply Lyme disease affecting the brain.
My patients go the hospital to have a PIC line (percutaneous indwelling catheter) placed into a large vein called the vena cava. A home nursing agency arranges for medicines to be delivered to their homes. The medicine is dripped into the vein from a bag daily. The dose of Rocephin is usually 2grams daily, a substantial dose. Herx reactions can be severe. I like to continue the treatment until the patient improves. The insurance company my have other ideas. 12 weeks is certainly better than 4 weeks which not be at all helpful. Rocephin is great because it crosses the blood brain barrier and needs to be given only once daily. The main side effect is sludging in the gallbladder with occasional cholecystitis (gallbladder disease). A medicine called Actigal can be given to reduce this effect. I have not found this necessary but might use it in a patient with known gallbladder disease. Rocephin inhibits cell wall synthesis. That means it only kills spirochetes. In severe cases I add Zithromax and Flagyl. Both can be given orally or by IV. Typically I add Zithromax 500mg IV daily and Flagyl 500mg daily. There is no literature to support this IV cocktail but it makes good sense and patients seem to benefit. Of course I realize that my anecdotal reports are not a substitute for sound science. One must realize that many studies in medicine will never be done. This is why medicine is an art as well as a science. The Zithromax works by an intracellular mechanism and is able to kill L-forms of Borrelia. The Flagyl targets the cyst forms of Borrelia. It has also been shown that such a cocktail is necessary to treat Chalmydia pneumonia if this is also present. Many patients have incredible responses. But I am unable to predict how an individual patient will respond. Follow up SPECT scans can show improvement in cerebral dysfunction. A prolonged course of oral antibiotics must follow the IV treatment in order to avoid any back pedalling from the gains that have been secured. The total duration of oral therapy is also hard to predict, but is likely to be many months to years.
While all these patients suffer with Lyme dementia doctors are busy fighting about whether or not chronic Lyme exists. Doctors who treat these patients are still targeted for State Medical Board investigations. Most patients generally are never diagnosed and I am afraid the repercussions are horrible for so many that could be helped. I hope to raise awareness so that many of these unfortunate souls can have access to treatments that can be extremely beneficial.