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Thursday, September 25, 2008

Babesia, I hope

The local newspaper reported this week that there has been a huge increase in the number of Lyme cases in the area. This is no surprise. The same article stated that only one case of Babesia has been reported. The reports of Lyme are based on CDC surveillance criteria. So how does Babesia become reportable? Here the IDSA (discredited?) protocol is followed. Positive antibodies in the blood do not count. By the way, most LLMDs believe there are about 12 Babesia strains which are Lyme co-infections. The antibody test available in Maryland only tests for B. microti. It fails to test for B. duncati, which can only be tested by labs like IgeneX, and appears to be as common as B. microti. To make the IDSA cut, for reporting Babesiosis as a bonafide case, the blood sample of patients with positive antibodies also need to meet one of two other criteria. There has to be a positive PCR: this only works if you are testing for the right strain, or: you have to demonstrate a positive blood smear showing parasites inside red blood cells. The problem here is that Babesia frequently infects only 1% of red blood cells. Some texts report that study of blood smears can take up to two hours. The average tech at Labcorp or Quest has only a few minutes, at best, to study the smears. The smears are microscopically magnified to the 400 power. Many experts believe that 1000 magnification power with oil immersion is required to identify the pathogens. No wonder only one case of Babesia has been "reported."

Despite all this bad news, I think the patient I saw today might make the cut for reportable Babesia. This young man in his mid 20's had a tick bite about two months ago. Incidentally he had a severe case of Lyme, associated with pericarditis about 3 years ago which appears to be in remission. He had planned to see me for a routine check up today. He had no idea that I treated many patients with Lyme and tick borne illness. Our encounter today was serendipity.

The physical was cancelled. For 6 weeks he had been experiencing episodes of fever, chills and soaking sweats, which had been recurring in cycles. He had experienced a sore throat, mild cough, weight loss, profound weakness and fatigue and some memory loss. In my office today he had an oral temperature of 102.9.

I believe this patient likely has a case of severe active Babesiosis. If I am correct his blood smear should be dramatically positive. Perhaps I am hoping too much. At any rate, I will shortly have lab results and find out how he responds to Mepron and Zithromax.

I will keep you posted.

Thursday, September 18, 2008

Urban Myths

One of my patients was quite confused. She told me that she had a hard time reading my blog because everything else she read on the Internet seemed to contradict the things I say. It is so hard to ferret out what is true. Of course the things I write about here are my opinions. But I try to put a lot of thought in the things I write. The community of folks who take chronic Lyme seriously are ridiculed by mainstream medicine. A patient I saw today was told by her neurologist: "Don't see those Lyme doctors, they are bull...." There is very little information about the clinical aspects of the disease which comport with the strict standards of evidenced based medicine; the same thing could be said about most of what "mainstream" doctors accept as gospel! For example, I attended a very interesting lecture about the connection between periodontal disease and systemic diseases. He showed graphic evidence that people with gingivitis and periodontitis had a much higher incidence of coronary disease, diabetes and many other diseases. The conclusion he drew was that periodontal disease causes or contributes to the causality of these illness. I learned in high school that this represents false syllogistic reasoning. For example: All doctors are smart. I am smart. therefore, I must be a doctor. This is obviously absurd. Well lets look at this presentation. Where are the double blind placebo controlled prospective studies that demonstrate that periodontal disease is causally related to heart disease or diabetes? Where are these studies which were performed at a large well respected medical center which were peer reviewed, demonstrating statistical significance? And where is the corroberating evidence obtained, by the same methodology at other such prestigious institution? This is the standard for "evidence based medicine." CORRELATION IS NOT CAUSALITY. This is a fatal logical flaw. For years doctors were taught that post-menopausal women who took estrogen had less heart disease. It was based on the observation that women had a 10 year delay in their relative risk of heart disease compared with men, and that this lower risk of heart disease disappeared after menopause. Then, finally, the prospective clinical trials were done. And guess what. The women who took estrogen after menopause had a higher rate of heart disease compared to the control group!
So the lecture I attended was interesting, but if I were a lawyer I would say: he brought everything. except his case. Let me explain. He showed a correlation, not a causality. Perhaps, for example, patients who get periodontal disease have an impairment in their immune system which also can lead to these other diseases. Perhaps people with gum disease have some unknown genetic mutation which can also cause these other diseases. But the best alternative explanation might be: people who have gum disease don't go to the dentist and take care of their teeth. Perhaps this same group ignores all other aspects of their health as well. Perhaps they eat more sugar-hence dental disease: maybe this is the cause of higher rates of diabetes. Perhaps they ignore cholesterol in their diets, exercise less, smoke more , drink more and have a wide range of deleterious health habits. Perhaps this explains why this cohort (population group) has more heart disease. Maybe the orthodontist is correct after all. But he sure hasn't proved his case. None of the many doctors in the large audience questioned his conclusions. In fact, he supplemented his claims with an abundance of medical "literature" and links to web sites which make exactly the same claims, all lacking scientific proof. When it comes to Lyme disease it is a different matter. Even science based evidence is ridiculed by the non believers who know better. There are a lot of claims made about Lyme disease which are clearly false or likely false. Excuse my pontification. Now, I will get to the meat of this post.

Lyme is sexually transmitted: No evidence. Lyme has been found in semen and female genital secretions.Even if it were true that Lyme bacteria had been found in semen and genital secretions it would not prove that Lyme is a sexually transmitted disease. BUT: IT IS NOT TRUE! Lyme bacteria have never been found in these fluids and secretions. Laboratory tests have shown positive PCR tests for Lyme DNA in these secretions. PCR technology used a primer of DNA, the blue print of organisms, which can attach to segments of DNA which are associated with the organism. This does not mean that live, viable intact Lyme spirochetes have ever been found in these fluids. It is well established that killed Lyme organisms are excreted through the urinary tract. In fact this is the basis for a laboratory test for the diagnosis of Lyme. Such protocols have been developed by Burrascano and IgeneX. A patient is loaded with LARGE doses of antibiotics after which PCR technology can demonstrate the presence of Lyme derived DNA in urine samples of tested individuals. If the test is done without antibiotics it is generally negative. No studies have been done which demonstrate live Lyme organisms in these fluids. Then, Lyme is compared to syphilis. Syphilis is transmitted with the help of an open sore in the skin or mucous membranes. Lyme presents no such lesion. In addition, all the evidence about Lyme demonstrates that it is a tissue confined organism. It cannot be found in any body fluids. Urinary contamination can very easily leave trace amounts of DNA in or around genital fluids. In fact, PCR testing involves tremendous amplification. It will find the most minute particles of DNA. The test is frequently criticized because it can be contaminated by a trace particle of DNA "floating around" the lab. Where is the meat!

Lyme is transmitted by mosquito bites and biting flies: Lyme bacteria have been found in these insects. NO EVIDENCE OF TRANSMISSION . Borrelia burdorferi has indeed been found in other insects. Can they transmit it to humans? A lot of work has been done working out the chemistry and immunology regarding the transmission of Lyme by Ixodes ticks to humans. It is a complex process.Mainstream thinking is that 24 hours of tick attachment is required. Even if this is incorrect, attachment must occur for a significant period of time. Mosquito and fly bites are over in seconds. To the best of my knowledge, an ECM rash has never been documented after a mosquito bite. Even if ECM is relatively rare, there should be at least one documented case if this is a significant mode of transmission. Let us discard this popular urban myth.

LLMDS are certified by ILADS: Sorry, there is no certification for LLMDS. They are self taught.

Herbs like samento work well. There is no evidence. Many of my patients have failed such therapies before coming to me for help.

Rife machines: No evidence.

Salt and Vitamin C: No evidence.

Cell wall drugs like Amoxil and Ceftin are dangerous because the convert Lyme to L-forms: L-forms are the dangerous form of Lyme. There is no evidence. In fact, clinical experience would suggest the opposite.

Vitamins, herbs and supplements: alpha lipoic acid, co-enzyme Q10, anti-oxidants, mutivitamins, magnesium, carnitine, omega 3 supplements and many others: No evidence.

Colloidal silver, intravenous vitamin C, intravenous hydrogen peroxide: Not only is there no evidence that these things help, but is ample evidence that they may be harmful.

Pulse therapy versus continuous therapy with antibiotics: No evidence.

Intravenous Zithromax and Flagyl are more effective than oral administration of same meds: No evidence.

This list can go on and on. More later. People: lets try to make sure their is a scientific basis for the claims we make. Let's at least qualify statements: "Bartonella might be a factor here, I am not sure: I have discussed this option with the patient. We are going to try Levaquin, based on anecdotal reports form other physicians that it might be helpful."

Careful. The others want to take us down. Don't give them the ammo!

All I got was a 41band!

The 41 band is non-specific. It is meaningless by itself. Haven't we all heard this?  The 41 band cross reacts with other spirochetes. Maybe not. Early studies, with Allen Steere as a co-author, showed that the 41 band was the band that was most prevalent and showed up earliest in the course of Lyme infection. The CDC considers it specific. It is one of only 3 IgM bands tested in their surveillance test. IgeneX considers it specific, it is marked with a double asterisk. Peer reviewed literature regarding the topic is scant. It is generally, and incorrectly assumed that the CDC standard can be relied upon for laboratory diagnosis of Lyme. There may be cross reactivity with syphilis we are told. Maybe.  How many syphilis patients have I seen in my suburban practice in the last 20 years? One. The patient tested  positive for syphilis and the Lyme 41 band was non-reactive. Syphilis is easy to rule out and  extremely unlikely to be confused with Lyme -- unless a patient has both.  And other spriochetal diseases? Literature suggests the 41 band may cross react with leptospirosis, rat bite fever and relapsing fever.  These diseases are very rare, may cause life threatening illness and look nothing like Lyme disease.  It is reported that the 41band cross may reacts with dental spirochetes. The primary dental spirochete is Treponema denticola. Oral spirochetes are part of our normal flora and typically are not antigenic (our immune systems recognize these spirochetes as non-pathogens and an antibody response does not occur).  The DNA structure of the dental spirochete is very different from that of Lyme. The 41 band corresponds to antibody reaction to a 41 kd Lyme flagellar protein. Equivalent flagellar proteins from T. denticola are of 38,53 and 72 kd weights. If the Lyme Western Blot is properly performed the proteins should not cross react. The non-supported claim that the 41 kd band is only spirochete specific, not Lyme specific is repeated over and over again without supporting source material.

Lyme Western Blots should be performed by a reference laboratory. The test is labor intensive and not automated.  There is ample opportunity for human error. The 41 band may appear more often because of laboratory error.

Please know that Lyme disease is not a laboratory diagnosis. The laboratory supports our diagnostic impression and is adjunctive.

There are numerous new and emerging species and strains of Lyme for which the Lyme Western Blot will reliably produce a false negative.

Genetic factors limit the ability of many sick patients to mount an antibody response to Lyme.

A 41 band cannot easily be dismissed.  Since the test was ordered I assume the diagnosis was clinically suspected to start with.

In Maryland and Virginia statutes require that doctors inform patients that Lyme tests are inaccurate when the test is ordered.

The CDC criteria is for surveillance, not diagnosis.

To date, lab tests for Lyme all have flaws.

In the right clinical setting, an isolated 41 band should not be ignored. Lyme patients may have no bands. Alternatively, a 41 band may indicate exposure  in a patient who is asymptomatic and therefore does not have Lyme disease.

Lyme disease may cause disability or worse, the epidemic is out of control and more cases are reported every year.

If a doctor says you don't have Lyme because you only have a 41 band don't believe it.  Late diagnosis can have disastrous consequences.  Consider another opinion.

Updated 7/6/18

Wednesday, September 17, 2008

Monday, September 15, 2008

Lab tests

I am getting a lot of questions about lab results lately, so I thought I would post a few remarks.
CD57: Burrascano and Sticker have published that is a good measure of Lyme disease activity. My experience has not been consistent with this finding. Many variables affect this measure. Some very sick Lyme patients have high levels. Others who are in clinical remission have consistently low levels. I obtain the test because it may be a clue, albeit a weak on.
C3a and C4a: These are sensitive indicators of complement activation. The complement system is activated when the immune system is responding to a perceived pathogen. Elevation of these levels may also be seen in autoimmune disease such as lupus.
C6 peptide antibody: This is difficult one to call. In my opinion and experience, index levels between 0.1 and 0.3 may be associated with a diagnosis of Lyme. I am fairly confident that levels of 0.4 and greater are highly significant. These levels correlate poorly with Western Blot results. So both tests are ordered.
Lyme ELISA: I am against the grain here. If the results are positive with a negative Western Blot, I can generally demonstrate exposure to Borrelia. Remember: The Western Blot assay associated with the two tier test is based on CDC surveillance criteria and was never validated as a diagnostic test. A positive serology for Lyme will come from: C6 peptide aby, IgeneX WB, or seroconversion after antibiotic therapy. I think that false positives are extremely rare and false negatives extremely common.
Lyme Western Blot: I am lucky (actually the patient) if I get a positive result with the 13 band test provided by most labs. The IgeneX test is more reliable. IgeneX still misses about 30% of cases by their own admission. Indeterminate bands should be give consideration if the clinical picture suggest Lyme.
Ehrlichia and Anaplasmosis: positive serology is very suggestive of concomitant Lyme.
Babesia: Labcorp will only test for B. microti. Specimens sent to IgeneX show a high rate of positivity for B. duncati. There is no test for most strains of Babesia. The IgeneX test costs an extra $135.00. Worth it. Babesia seems to be of increasing frequency and should be strongly considered if clinical signs are present.
Bartonella: Rarely positive. Probably very significant. There is no good test. Its significance is controversial. Some doctors believe that Lyme complex is a triad: Borrelia, Babesia and Bartonella.
B12 and Folic acid: Frequently low. Part of the syndrome. Supplementation recommended.
Vitamin D: Low levels of vit D OH 25 and high levels of vit D 1,25 suggest L-form disease. This is controversial, but it is frequently seen in Lyme patients.
Chamydia pneumonia, Mycoplasma, HHV6 and others. These are tests for other chronic infections which may contribute to chronic Lyme symptoms. LLMDS vary greatly on the significance and approach to positive results here.
Sed rate and CRP: These are markers of inflammation. There are frequently very high. If someone is diagnosed with "fibromyalgia" look out. One criteria for this diagnosis is that lab tests, including these two, are normal. These levels improve as patients improve. Sometimes levels stay high. These patients seem to have co-infections are are difficult to treat.
ANA and RA: Traditional markers of lupus and rheumatoid arthritis. These levels are frequently elevated in Lyme disease. They are associated with autoimmune reactivity. The levels usually return to normal when Lyme patients are successfully treated.
CBC: Many Lyme patients have low WBC counts. (white blood cells). They also frequently have a "right shift." This means there is an excess of cells called lymphocytes and monocytes and a deficit of cells called neutrophils. This abnormality is common. I have not seen it reported in Lyme literature. It usually corrects with treatment. Lyme patients have anemia more frequently than would be expected in the general population as well.
RBC (red blood cell) magnesium. Frequently low. Associated with leg cramps. supplementation may be helpful. Blood levels are not accurate.
C3d: A test only available from Quest. I shows circulating immune complexes which are commonly seen in Lyme disease. Not used much at this time.
Brain MRI: Shows lesions in the white matter of the brain. Correlates with significant neuroborreliosis. (brain involvement)
SPECT scan: Looks for Gray matter abnormalities in neuroborreliosis. Decreased blood flow to the cerebral cortex is frequently seen. This test may show improvement after treatment.
Western Blots, Western Blots: This tests frequently needs to be repeated several times before a positive is obtained.
EMG/NCV: these are electrodiagnostic test which can performed by a neurologist which may help confirm and quantify the presence of peripheral neuropathy seen in Lyme patients.
Most Lyme patients will show something abnormal if all of these tests are done. This is very different from what the average, non LLMD orders: A Lyme ELISA with a reflex WB of only 13 values. This test is almost worthless. Especially in chronic cases.
If you know all of this stuff it will expedite your visit with your LLMD. Lyme disease can still only be diagnosed when the history, physical exam and lab/imaging data are combined in a mosaic to confirm a clinical suspicion. Nonetheless, I have never seen a case of Lyme associated with lab tests which were 100% normal. You have to know what to order and how to interpret the results. The text book for such things has not yet been written.

Friday, September 12, 2008

Star Trek

I love the reference to Star Trek. I have been a little too busy lately so I haven't had time to post much. I haven't seen the show for years, so this quote will be a little off: Kirk says, pleadingly to the ship's doctor: "Come on Bones, you've got to more." Bones replies in a curt and frustrated manner: " I am doing the best I can! What do expect Jim, I'm just a simple country doctor!"

Such is the position I find myself in. Abandoned by the ivory tower experts. All alone in the end zone as they say. Suddenly I have had to become an expert in: bacteriology, immunology, neurology, imaging technologies-including nuclear medicine, antibiotics, antibiotic cocktails, drug interactions and anti-malarial drugs just to name a few. I am still treating hypertension, diabetes, performing minor office surgery and the other standards of family practice medicine.

We are not in Kansas anymore Toto. I am outside the box. Way outside the box. To quote or paraphrase Joe Biden: "First you have to make sure your feet are firmly planted, then stand steadfast." I can't afford to be wrong. I've got to be right 100% of the time. I ignore this reality otherwise it would be hard to function. "Thanks for your support. Thanks for all the fish." (A Hitchhikers Guide to the Galaxy).

Yes, Flagyl works well by mouth. It is not clear that macrolides or tetracyclines work better intravenously than by mouth. Bicillin, long acting injectable penicillin may be a good alternative to Rocephin. It has been used to treat syphilis for eons. It is hard to know why different drugs work better for different patients. Nonetheless, that is the clinical reality.

Congressional luncheon September 24, sponsored by Turn the Corner Foundation with director of "under Our Skin" and author of "Cure Unknown". The host will be the National Capital Lyme and Tick-Borne Disease Association. For kicks look up website: Check out the picture and the caption.

As has been oft said: History would be a great thing if only it were true. The sad thing is that the same thing can be said of things which are happening now. History in the making?

It's Friday. I've lost it. Give me a break: Last quote, the X-files: "The truth is out there somewhere."

Cheers everyone

Monday, September 8, 2008

What are these doctors thinking?

There may be a lot of controversy and nuisances in Lyme medicine. But here is the story of a new patient I saw today. Several months ago, a patient was bitten by a tick. This was followed by a classic bulls eye rash (which he only learned after he looked it up on the Internet). He ignored it. It went away. He had few symptoms except a little joint pain which he attributed to weight lifting. After some time, he developed acute Bell's Palsy. He went to a major University teaching hospital in search of some help. Because he also had a little numbness in the arm and shoulder of the affected side, he was evaluated by the stroke team. (Did I tell you he is his early twenties.) They did some blood work which got lost in the "system." The did a spinal tap and two CAT scans. They then treated him with steroids (predisone) and Valtrex, a medicine for Herpes and Shingles. No antibiotics were given. A month later he went back to the neurology unit to have his scheduled brain MRI, which was done. The neurologist involved came running out excitedly: "We know what it is!" Apparently the lost lab work was found. He had 5/10 IgG Lyme WB bands, meeting the CDC national surveillance criteria for a positive Lyme test. The previously puzzled team of neurologists and experts now proclaimed: "You have Lyme disease!" They gave him two weeks of Doxycycline and sent him out the door.

Comments: The guy had a tick bite, a classic EM rash and the docs at the ivory tower University hospital didn't ask about it. It must be because they are programmed with the mantra, repeat after me: There is no Lyme disease: There is no Lyme disease:... After all, that's what the prestigious New England Journal and the American Neurology Association have said.

Even without that history of tick bite and EM rash: The majority of cases of Bell's Palsy in a Lyme endemic area are due to Lyme disease. Every mainstream text and resource will tell you that. Herpes viruses are an unlikely cause. There is no role for steroids. They spent how many thousands of dollars on a spinal tap, two CAT scans, one MRI and overpriced consultant fees before they even bothered to look at his Lyme lab report.

Two weeks of Doxy? Bell's palsy indicates we are dealing with stage 2 Lyme according to the IDSA. Even stage 1 is treated with 3 to 6 weeks of antibiotics. Gary Wormser himself would recommend that this patient recieve at least 6 weeks of antibiotic therapy.

I couldn't make this stuff up.

Thursday, September 4, 2008

Restless legs

I saw two patients today who were grateful that their restless legs were better and they were able to sleep. RLS (restless leg syndrome) or periodic limb movement disorder is commonly seen in my Lyme practice. Sleep apnea and RLS are the two most common disorders diagnosed in sleep labs. Sleep clinics say RLS is frequently related to iron deficiency and low ferritin levels. In my practice it is related to Lyme disease. The afflicted persons limbs, especially legs move around in a jerking fashion interfering with sleep. It is a type of movement disorder. It is related to Parkinson's disease and responds to the same medicines. Drugs like Mirapex which increases dopamine activity in the brain are effective. Neuroborreliosis seems to cause a mix of conditions related to abnormal neurotransmitter activity. Rocephin's efficacy, is in part, thought to be due to its mitigating effect on glutamine, another neurotransmitter. Many patients develop a host of psychiatric symptoms which improve when neurotransmitters are "tweeked" including: serotonin, norepinephrine, GABA, glutamine, dopamine and possibly others. The cause is unclear. Is it infection of glial cells, supporting brain cells, neurotoxins, inflammation or other issues? Another day: another piece of the puzzle.