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Wednesday, June 11, 2008

Maryland Department of Health: Alternative views

This anonymous blogger, called Sequoia has been a tremendous help to me. It turns out that the Maryland State Health Department commissioned a task force to study the issue Lyme disease and vector borne illness in the state.
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.


sequoia said...

You're welcome. Hope it will help. However, if the board persists, please consider that this is not a private battle, to fight alone. You may want to alert an area patient support group and ILADS, for their advice and assistance. A doctor in WI, in the same situation, was helped by a lot of patient pressure on state officials, and they didn't even have any written statements made previously that could be used against the state.

What the Maryland board has done to you already contravenes the policy they described in the documents I mentioned.

Lyme report: Montgomery County, MD said...
This comment has been removed by the author.
sequoia said...

While it is true that the CDC was behind an attempt to shut down IGeneX several years ago (which failed because state officials could find nothing wrong in repeated inspections), there is a recent published article in which IGeneX is one co-author, along with reps from the CDC and Johns Hopkins. Change of heart maybe, or just different and more enlightened people at those institutions?


Serologic Evidence Of Ehrlichia Chaffensis Infection In Peru

P. L. Moro1
, J. Shah2
, M. H. Moro3
, R. H. Gilman4
Immunization Safety Office, Centers for Disease Control and
Prevention, Atlanta, GA,
IIGeneX Inc, Palo Alto, CA,
Department of Diagnostic Medicine/Pathobiology, College of
Veterinary Medicine, Kansas State University, Manhattan, KS,
Department of International Health, Johns Hopkins
Bloomberg School of Public Health, Baltimore, MD.

Background: Serologic evidence for human ehrlichiosis has been found in certain South American countries such as Argentina, Brazil, Chile and Venezuela. No study has documented any cases of human ehrlichiosis in Peru though Ehrlichia canis infection was recently demonstrated in Lima city dogs. Given the absence of data, we conducted a serosurvey in different communities of Peru to determine the possible presence of Ehrlichia chaffensis.

Methods: A serosurvey for human ehrlichiosis caused by Ehrlichia chaffensis was performed in different regions of Peru. Those regions included an urban shantytown in Lima city, a rural community in the northern coast of Peru, Department of Piura; a rural community in the southern Peruvian Andes, near the city of Cuzco, Department of Cuzco; and a rural community in the jungle Peruvian region, near the city of Iquitos, Department of Loreto.

Results: An overall seroprevalence for human ehrlichiosis of 16.9% (27/160) was found using an indirect immunofluorescent assay. Seroprevalences in the Lima city, northern coastal, Andean and jungle communities were 5% (2/40), 25% (10/40), 23% (9/40), and 15% (6/40) respectively. Seroprevalence in the Lima city community was significantly lower than in any other surveyed regions (p < 0.01). No associations were noted between seropositivity and gender or age
of study participants.

Conclusions: Our findings suggest that human infection with Ehrlichia chaffensis occurs
throughout Peru. Further studies are needed to characterize ehrlichia species in Peru, their vectors and their clinical significance.

sequoia said...

I went looking on pubmed for the abstract to get a publication date and journal name, but it has not yet appeared on their database.

This was one of the abstracts submitted to the 2008 Emerging Infectious Diseases Conference in Atlanta this March. Here is the source:

Lyme report: Montgomery County, MD said...

You are very knowledgeable. I would like to meet you if you know who I am. You could contact me through ILADS. I have found a high prevalence of Ehrlychia antibodies in patients treated for Borrelia. I do not know how important it is a a real co-infection requiring separate treatment, or if it should be seen more as a marker for Ixodes exposure. Most of the Lyme antibiotics cover Ehrlychia. I have the same questions about Babesia and Bartonella. IDSA guidelines for Babesia seem worthless. Very few patients have positive PCR or blood smears. The protozoans may infect 1% of RBCs or less. I may not treat unless there are "malaria like" symptoms or the antibody titers are high. Some LLMDs routinely treat for 2 or 4 months. Is there any evidence that treatment beyond 3 weeks is helpful? My sense is that the focus that many colleagues have on co-infections is misguided. I do think it is all about Lyme. But I think the research on Chlamydia pneumonia is also convincing. So I treat many patients with some of Stratton's cocktails. Comments?

sequoia said...

Here is a longwinded reply. Guess you won’t ask for comments again!

The ehrlichia abstract was intended to show that IgeneX is collaborating on tickborne research with people at the CDC and Johns Hopkins, and therefore cannot be a rogue lab, as your critics suggested. Maybe wave this under their noses the next time they question this lab’s qualifications.

As far as treating coinfections, not sure my opinion is worth much. I have only my own experience to go on. This was a long-undiagnosed case of babesia, which was first treated with a couple days of low dose malarone, then two weeks, then finally the malarone treatment continued for about 5 months. At the end of that time, I was still not free of the babesia symptoms and had become anorexic. Finally, a different doctor put me on mepron and zithromax for a couple of months and that, along with a few weeks of artemisinin (used in malaria treatment by WHO, etc), finally knocked the babesia on the head. There has been no reoccurrence at this point and it has been several years. Although it is definitely hard to pin symptoms to a particular germ when the patient has several tickborne diseases, and there can be overlap of symptoms, in my case some symptoms really did disappear with successful babesia treatment. So I am inclined to think that these coinfections do need to be treated separately, and seriously.

Doctors who have treated thousands of tickborne disease patients sometimes find it necessary to treat co-infections for quite a long time. Since they are very experienced, this is credible, and should certainly be considered. I am not sure if there is any hard and fast rule for how long to treat, because it may vary.....depending on immune functioning, germ load, individual responses, strain or species differences, etc. Whenever anyone says that X amount of treatment will cure any particular disease, I get very disturbed because it sounds like cookbook medicine. And if there is anything sure about tickborne disease treatment it is that there is a lot of variation between patients. It is logical to have a starting point, perhaps, for everyone, but then be prepared to change course depending on response.

Very difficult medical situation when the tests are not available or not entirely reliable, and there is a lot more seat-of-the-pants flying than one might wish in a world of insurers, state medical boards, etc who want cheap, short, cookbook treatments. Medical literature shows that chlamydia and bartonella can cross react in antibody testing. A type of bartonella called hemobartonella has been reclassified as a mycoplasma, and is being identified in the blood smears of some tickborne disease patients. Some mycoplasmas vary in their response to antibiotics. Not all the bartonella species have tests. Lyme patients can apparently get all these and more from a tickbite. Man, what a confusing disease picture this is! Sometimes in the face of a situation like this, trial and error is the only recourse in treatment, and when something works, stay with it even if the theory isn’t there yet. For instance, clindamycin is known to treat some forms of mycoplasma. For patients who respond to it, this may then be what is being treated.

There is some medical literature that suggests coinfections like babesia and ehrlichia can be persistent, and even one that calls persistent ehrlichiosis a post-infectious disease! Seems like a real wave of post-infectious diseases around these days. But I suspect this is just another case of an undertreated infection. I am posting below a couple of ehrlichiosis abstracts. For babesial persistence, David Allred, a veterinarian researcher from a FL university who spoke at an ILADS conference a couple years ago, has produced some interesting work. Here are links:

J Am Anim Hosp Assoc. 2004 May-Jun;40(3):174-84.
Chronic canine ehrlichiosis (Ehrlichia canis): a retrospective study of 19 natural cases.
Mylonakis ME, Koutinas AF, Breitschwerdt EB, Hegarty BC, Billinis CD, Leontides LS, Kontos VS.

Clinic of Companion Animal Medicine, School of Veterinary Medicine, Aristotle's University of Thessaloniki, Thessaloniki, Greece.

Nineteen dogs from Greece with chronic ehrlichiosis were studied. The dogs exhibited bicytopenia or pancytopenia, bone marrow hypoplasia, seroreactivity to Ehrlichia canis (E. canis) antigens, and had no history of drug or radiation exposure. Anorexia, depression, severe bleeding tendencies, hypoalbuminemia, and increased serum alanine aminotransferase activity were also hallmarks of the disease. All these animals eventually died, irrespective of the treatment applied. Some dogs were also serologically positive for Rickettsia conorii, Leishmania infantum (L. infantum), and Bartonella vinsonii subspp. berkhoffii. Polymerase chain reaction testing of bone marrow samples revealed E. canis, Anaplasma phagocytophilia, Anaplasma platys, and L. infantum in some dogs. Concurrent infections did not appear to substantially influence the clinical course and final outcome of the chronic canine ehrlichiosis.

PMID: 15131097 [PubMed - indexed for MEDLINE]

And here is TA ehrlichiosis syndrome:

Emerg Infect Dis. 2002 Apr;8(4):398-401.
Outcomes of treated human granulocytic ehrlichiosis cases.
Ramsey AH, Belongia EA, Gale CM , Davis JP .

Centers for Disease Control and Prevention, Atlanta, GA 30333, USA.

We conducted a case-control study in Wisconsin to determine whether some patients have long-term adverse health outcomes after antibiotic treatment for human granulocytic ehrlichiosis (HGE). A standardized health status questionnaire was administered to patients and controls matched by age group and sex. Consenting patients provided blood samples for serologic testing. Among the 85 previously treated patients, the median interval since onset of illness was 24 months. Compared with 102 controls, patients were more likely to report recurrent or continuous fevers, chills, fatigue, and sweats. Patients had lower health status scores than controls for bodily pain and health relative to 1 year earlier, but there was no significant difference in physical functioning, role limitations, general health, or vitality measures. The HGE antibody titer remained elevated in one patient; two had elevated aspartate aminotransferase levels. HGE may cause a postinfectious syndrome characterized by constitutional symptoms without functional disability or serologic evidence of persistent infection.

PMID: 11971774 [PubMed - indexed for MEDLINE]

Lyme report: Montgomery County, MD said...

I love your information. Thank you.
Mycoplasm is an intracellular L-form and may be difficult to eradicate. The work of Stratton on Chlamydia pneumonia is interesting.
This organism is very hard to kill. It has a three phase life cycle and alternates between and intracellular form, an extracellular form and a spore form. In vitro testing demonstrates its resistance to antibiotics. Cocktails of Zithro, Doxy, Amoxil, Flagyl, Rifamin and even INH have been used to kill it. The CPN believers think it causes everything. Wheldon in England presents convincing evidence that CPN is causally related to MS and that he has had success treating for this infection and getting early stage MS patients better. Post infectious disorders such as reactive arthritis are said not to respond to antibiotics. PCR testing has confirmed the persistence of Chlamydia and other germs in the joint tissues. I suspect that trials with Doxy by itself have been ineffective because the germs are much more difficult to kill than standard paradigms would have one believe. Treatment for post-infection syndromes really due to chronic infection can only be addressed if the biological behavior of the various germs is fully understood. Virtually everyone is walking around with a plethora of potentially pathogenic bacteria in their bodies and most people never get sick. I have found patients to have persistent elevation of Ehrlichia titers after months of treatment and I have wondered if there was persistent infection. Bartonella is prevalent in homeless persons and transmitted by many insects such as fleas. I wonder if some of these infections are opportunistic and only cause problems when there is some amount of immunosuppression due to Borrelia infection. This is the "gateway" concept. Your information helps me. I am trying to learn as much as I can about these challenging problems. When you are operating outside the box it helps if you are armed with as much data as possible.

dogdoc said...

This is a very belated comment as I have just come to the blog and am reading thru past posts to learn. For what it is worth, I find treating chronic E canis to be about like treating Lymes. They say to treat it short term and ignore the titers that persist. Unfortunately, if you do it this way, just like in Lymes, the disease persists. Post disease syndrome my behind- what a cop out for I didn't pay attention and get it treated. Dogs with Erhlichia typically have changes on CBC's and blood's that in combination with clinical signs, makes a good endpoint to treatment. Notice I didn't say titers. Go at least 1 month past resolution, cautiously withdraw and monitor. Reinstate if you didn't get it. I am the LLMD equivalent in my field I guess, but why let a bacteria or rickettsia get the best of you?

You know I have conquered my anger. However it did dawn on me that we have a way to fight back. I have never, ever been a lawyer type. However, I have to admit money drives the system. So, when we fix all these poor souls, I think we have some wrongful diagnosis and loss of work/ suffering suits to bring up. Proceeds donated entirely to the help the LLMD lawyers fund. Lets put the shoe on the other foot- I bet we can find a whole lotta patients that will go up against IDS or teaching hospital guys. I can see class action even. Again I don't believe in lawyers, but I believe in playing the game to win for the side that is right. Both medical boards and circuit courts can be targeted. Instead of just defense, perhaps offense might be the best defense? It's a hassle factor really. If the IDS vs you is standard line, how about a blog for prior patients on all lymes nets in her area calling for participants in a potential class action suit? I'm sure this is so old , no one will see it. But we need to speak up in a way they will understand- tit for tat. You hassle me and you get it back in spades.
I'm sorry but you hassle my LLMD, and perhaps it is time to mess with you. I'm sure this is so old, no one will see the post. But if you do, let me know.