Tuesday, February 17, 2009

Lyme disease, coinfections and its discontents

We are having a hard enough time convincing the mainstream of medicine that persistent Lyme infection exists. I am concerned that some ILADS physicians have adopted questionable and unsubstantiated approaches regarding the diagnosis and treatment of purported co-infections. There are a lot of test for Lyme. There is well documented seronegative disease. OK- we are on fairly solid footing here. I am afraid some LLMDS sometimes conjure up diagnoses out of whole cloth- based on my observations. For example, a patient may report neuropsychiatric symptoms; AND without further ado, the physician may then proclaim the patient has "Bart." (Bartonella). These patients usually have negative serology, negative blood smears and negative PCRs for all the known strains of Bartonella; yet, the physician will make the diagnosis with a sense of absolute certainty. The facts do not support this conclusion. There is no evidence that BLO- Bartonella like organisms exists. Therapy then, is directed against these clinically diagnosed "Bartonella." Perhaps drugs like Levaquin- Rifampin- Zithromax and Minocin work for these patients because of their excellent penetration into the central nervous system, past the blood brain barrier. They are all effective against Borrelia burdorferi- Lyme. More often than not we don't REALLY know what we are treating. Patients with established Lyme disease respond differently to different antibiotics and different antibiotic combinations.

Chronic Lyme disease, or Lyme Borreliosis Complex if you prefer, is a complex multi-system disease with protean manifestations. The illness may frequently be associated with a polymicrobial mix of other pathogens. But much of this is very speculative at this time. For example, patients with severe episodes of sweating- considered the sin qua non of Babesiosis by many Lyme experts, frequently get better with only Lyme antibiotics. And- patients with positive Babesia antibodies may show no signs of the illness and get better without specific therapy.

Frequently the treatment of Lyme and its associated co-infections is based on empirical grounds, trial and error. Patients may respond to a wide range of therapeutic options, frequently in unexpected ways. Patients may indeed have a mix of pathogens contributing to the disease state. These may include: Mycoplasmas, Chlamydia pneumonia, Ehrlichia, Babesia, viral infections and many as of yet, unidentified pathogens, in addition to the known co-infections. For example, Clongen labs has identified an organism frequently found in the blood stream of patients afflicted with tick borne illness. It looks like a small bacteria but no DNA match can be found. Research into the nature of this organism is still ongoing. Clongen has twice reported bacteria inside white blood cells which resemble Ehrlichia. However, all standard tests, serological and PCR for known variants of Ehrlichia and Anaplasmosis have been negative. I don't know what this bug is. An unusual species of Rickettsia has been found in a high percentage of Maryland Ixodes ticks. The significance of this microbe has not been determined.

Rather than labeling patients with: Lyme- Babesia and Bartonella, perhaps it would be best to describe the individual clinical responses seen in each patient. For example, patient A has a syndrome which is responsive to Rifampin.

Why is this important. It is beyond important: It is critical.
A narrow ILADS paradigm or box, can ironically begin to resemble more and more the sort of narrow paradigm or box utilized by the IDSA, of which we are so critical. The IDSA box in my opinion is wrong, but it is fact based. If ILADS is to successfully spar against the IDSA it needs to marshal arguments which are clear, cogent and fact based. LLMDS are for the most part community primary care physicians. The opponents have all the resources of medical academia at their disposal. The fight is lopsided at the outset.

And I am very concerned that the LLMD box may have already disenfranchised some of the most critical players in the Lyme versus IDSA debate. The academic support for the chronic Lyme cause has come from Fallon and Donta. If they don't buy into the significance of the co-infection hypothesis, this should not be seen as a negative. Rather, it is a positive. They are academic in their approach. If they are going to give their stamp of approval on something there has to exist a significant body of evidence to support that thing.

As the two sides of the debate hunker down and prepare for battle, with medical licenses on the line and the future ability of Lyme patients to have access to any LLMDS, the lines must be clearly drawn. It must be a fight about whether or not Lyme organisms persist in the body and cause chronic illness in patients necessitating the use of long term antibiotics.
PERIOD.

Additional point: It has come to my attention that some advocacy groups within the Lyme community have been over zealous. Changes need to be incremental. If groups insist that every thing change at once this will continue to have disastrous effects on efforts for political reform. Sometimes well meaning individuals can become their own worst enemies.

15 comments:

bitten said...

When my PCR test is confirmed I hope you use my case. If not, others are going to. Take a sample if you need to do that. It is scientific proof and someone else will use it. I would rather it be you.

lymie said...

I was under the impression that there were not commercially available tests for all known species of bartonella. Also, they are still finding new species. So, testing cannot be the ultimate arbiter.

Emerg Infect Dis. 2009 Jan;15(1):66-8.

Isolation of Candidatus Bartonella melophagi from human blood.

Maggi RG, Kosoy M, Mintzer M, Breitschwerdt EB.

Department of Clinical Sciences, College of Veterinary Medicine, North Carolina State University, Raleigh, NC 27606, USA.

Candidatus Bartonella melophagi was isolated by blood culture from 2 women, 1 of whom was co-infected with B. henselae. Partial 16S rRNA, RNA polymerase B, and citrate synthase genes and 16S-23S internal transcribed spacer sequences indicated that human isolates were similar to Candidatus B. melophagi.

PMID: 19116054 [PubMed - in process]

Lyme report: Montgomery County, MD said...

It is an evolving science and art.

You should understand the basis of my arguments.

If- When I have to defend myself against Medical Board charges, leveled by the IDSA, I have to very careful in how I proceed. There is tremendous evidence for the existence of chronic Lyme. There is sporadic evidence for the existence of many old and new emerging bacteria, in vitro and in vivo.

What I am suggesting is that LLMDS learn to couch descriptions of diagnosis and therapy in a way which may be more palatable for convincing the non believers.

Let us start with what we can prove.

Malarone and Mepron help thousands of patients. It is OK to say we don't really know how it works but our clinical practice has shown it to be effective.

If you scan the PDR you will find that the mechanism of action for many commonly used drugs is unknown.

When one starts talking about treating things which cannot be proved it tends to reduce credibility.

The Lyme community needs to focus on credibility.

I think it is better to say- Hey, Levaquin and Rifampin work for patients suffering with the chronic Lyme syndrome. We don't need to posit a specific reason.
That can only get us into trouble at this point in time.

By the way, I am not saying that anyone is wrong, please understand that. I am saying there is much yet to be learned.

KISS principle: keep it simple stupid

Tom P said...

I like this post. I was also said to have "bart," based on a few anxiety problems. The doctor who told me this is a self proclaimed, in his own words, "Worlds Foremost Bartonella expert." I spent a huge amount of money on him, and he insisted that I had bartonella, on top of lyme, which I had already tested positive for by cdc standards.

This doctor also tried to sell me his bartonella books, which I had already read in his waiting room. They were filled with grainy pictures and tons of subjective findings, claimed by him, to be linked to Bartonella- Everything from moles, to hyperpigmentation, to acne. I left feeling like I should not trust the guy, and never returned. I still dont know if I have Bart, but did test positive for Chlamydia Pneumonia and Lyme. Negative for Bart and Babs.

Tom P said...

Oh, I also feel I should add, that this guy, said "All other LLMD's don't know as much about bart as I do, because they're IDIOTS! who are out of date, and ignore research." This statement also made me want to run, whether it was true or not.

Starlings Preschool said...

Yikes! to Tom P.
LymeMD, what do you make of this scenario: a patient presents with myoclonus, severe neuro-psychatric symptoms (derealization, suicidal thoughts, anxiety, depression) which seem to respond dramatically to Levaquin at one point (then backsliding to square one) and then again to Rifampin (and then backsliding to square one). These are "bartonella" drugs.
Would you attribute the symptoms to Lyme or something else? What else can cause this severe presentation?

Lyme report: Montgomery County, MD said...

This is all theory, conjecture and supposition based on no facts.
READ THE ILADS GUIDE FOR PSYCHIATRISTS WHICH CAN BE PRINTED FROM THEIR WEBSITE.
Lyme causes all of the neurological and psychiatric symptoms described.
All of these "Bart" drugs kill Lyme. Look it up. These drugs have good penetration past the blood brain barrier. The patients I have seen who test positive for Bartonella do not have psychiatric symptoms different from pure culture Lyme patients. Bartonella is intracellular and infects red blood cells. Please show me medical literature that demonstrates its ability to cross the blood brain barrier and cause persistent brain infection.In my experience, these patients do even better with IV Rocephin. Frankly, I keep seeing patients who have not improved after months of Bart therapy from other physicians. They respond amazingly well to Rocephin. Bartonella is susceptible to multiple antibiotics including Zithromax and Doxycycline. What is special about Rifampin, Levaquin or Bactrim? in this case?

What is described is a particular form of brain- neuropsyciatric disease, associated with neuroborreliosis. Some patients get better with drugs known to have better CNS coverage.

You are quoting the party line. It is based on idiosyncratic theories of well known LLMDS.

Maybe they are right. The IDSA guidelines are all about opinions. That an 4 dollars will but a cup of coffee these days.

Show me the facts!

(I am sorry if I am a little over the top- I am having a bad day)

Starlings Preschool said...

You're right! And your response is not over the top.
The problem as I see it--there just isn't a lot of research to show because NO ONE SEEMS TO BE DOING ANY. WHY is no one taking an interest in this?
Actually, I heard today that Stanford has finally gotten a clue and is launching a small "study". It's about time!

oyvey said...

I am a believer that Bartonella is a tickborne infection. That's because my daughter came home one day from college terribly ill with severe gastrointestinal symptoms, and eventually mental and neurological symptoms and she eventually tested with extremely high titres for Bartonella. (Her test from Igenex wasn't clearly positive for lyme--perhaps because she was so very ill and didn't have the antibodies?)

Anyway, two months of levaquin seemed to be a miracle cure and she was out of bed after 4 years of suffering and improving rpaidly. But at the doctor thought two months was enough of levaquin and stopped the treatment. She quickly regressed and became symptomatic again and the Bartonella titres skyrockted again

My daughter is unusual I think because her test results were so clear cut. She is still trying to get rid of the Bartonella and the combination that has done the best for her is bicillin and levaquin together.

I know five other people, including myself, who have similar symptoms to my daughter--though not as physically severe--and all of us were diagnosed clinically with Bart. For all of us the combination of levaquin and bicillin has helped the "Bart-type" symptoms (including the psychiatric type problems ) enormously.

I have been reading your wonderful blog awhile and I have wanted to ask you if our experience meshes with a theory you once mentioned that the lyme is knocking down the ability of our bodies to cope with the Bart. And that the Bart is a secondary infection because with the combination of the lyme killing bicillin with the levaquin seems so much more effective than levaquin alone.

Lyme report: Montgomery County, MD said...

A correction:

I rescind my remarks about Bartonella and the Blood brain barrier. There have been case reports of serious brain infection which have been very well documented.

It is a small bacteria and has that capability at times. This however, seems to be infrequent.

All things considered, Brain infection with Lyme is much more likely since it is extremely common.

HEALTH FUN GUY said...

A wide range of issues here and not time to adddress them all.

1) When you inherit people on the drugs reported to kill Bartonella, and which the leading Vet researcher EB says these fail, as was said by defamed person above, what do you say? Treat with same old same old? Longer? Higher?

So back to IV forever model that has the dead among its patients, including dead LL MD's.

2) I appreciate you corrected yourself on the idea that Bartonella enters the brian, since if one reads the literature in PUBMED full-time for a long period of time that is clear.

3) The person defamed was published by the former editor of JAMA many years ago on Bartonella's effects on mood and cognition with a paper with 88 references, and in literature it can damage every organ 20 ways. As to the brain, massive.

4) Some compliant about fees? This was not in clear writing?

5) You read 500 page books in a wait period?

6) Dr EB who is working closely with Duke reports that Bartonella has more vectors than any infection on earth.

7) With the emerging MD shortage and a massive shortage of peoplkwe willing to treat the nasty and medically impossible, we do not have enough. If comments made were not repectful of other professionals, that was not good form.

But getting people after spent 250,000 of 100 people is not fun either.

8) The way to keep it simple is to accept that the I. scap tick is a massive petri dish of many organisms.

9) If one reads the emerging numbers in PUBLIC GENE DATA BASES the number of Babesia and Bartonella species is exploding.

10) I am not sensing any reading of the sifted crates of articles that talk of indirect testing--the chemicals covered by insurance with about 5--40 papers supporting each.

11) At this time the experience and density of the infection clusters pased from one or more bites--could a bulls-eye be a sign of previous biles?-- is far ahead of the clinical practice. One can see 30-50 people in a week, use physician extenders, use set dosing foe all, such as Mepron 1500 mg/day which leaves some Bbaesia after a full year in some patients, and 500 of zithro when research out and handed to people was the Babesia killing dose was not at 1500 mg/day, but 2,000.

Newer research not read shows treatments for Bartonella that stun and do not cure.

Never research reports that the course of Bartonella

12) newer research shows Bartonella is often or commonly not inside cells, but on the edge. This varies depending on the country and species and varients of species.

Good Luck to all in thier journey. And I hope the site owner is able to stay safe from those that would not allow the freedom he deserves to work with patients as he sees fit.

Be well all......

HEALTH FUN GUY said...

I am sorry for spelling errors. Rushing to work, and wanted to propose some ideas.

If merits are based on old Brit boarding school grammer/spelling polish, than ignore post.

Perhaps the kids have it correct--if not serious location like a journal, writing TWO emails faster with a few errors is better than re reading for perfect publishable copy to reach golden perfection.

Sorry... No time to get perfect.

Best to all on the journey to health.

cmak said...

Its surely strange how zithro helps 20 symptoms and levaquin helps the other 20 symptoms..

Zachary Pettigrew said...

Agreed on many comments. Im'm positive for B. burgdorferi, C. pneumoniae, M. pneumoniae, Brucella, EBV, and Parvo per formal lab data. These were requested tests, see below.

Due to my immune compromise, my first 12 or so Infect Dis. Docs either said I was a "mystery diagnosis", "too complex", or was "healthy, so needed to see Psyche."

I have found my long term central line/oral combination therapy more and less successful in areas. Luckily, I happen to be a Biomedical Researcher, and speak the same "language". Therefore, my treatment has not been a strict "check-in-the-box" process. It has been an organic, collaboration between Me and my Physician. We come to a consensus on why we do what, and when. He has modified his standard protocols several times to "adjust" or accommodate where I am/was in treatment.

With most Physicians, there is a personal insecurity that leads them to overcompensate and double down on their parameters and protocols. This is a disastrous approach with respect to patient care.

Medicine is NOT Science. Medicine is using some science to "practice" the Art of Medicine.

As a flight medic and researcher, I know that each pt is different, and not every pt responds to the same tx, the same way, all the time. In my career, we had a saying, "treat the patient - NOT the paperwork!".

Further, with Biofilms being a strong component in such cases, you are talking about different sites of infection, different bacterial ratios and different *communication networks*, surface protein modifications and horizontal gene transfers. This makes each infection unique to each pt. Therefore a tailored approach is likely a necessity for good outcomes.

The long and the short is that the Provider should work with the Pt, listen to them and treat them according to presentation, medication responses, patient input/history and laboratory/diagnostic data.

Medicine is not plugging numbers into a spreadsheet, diagnosing based on antibody numbers alone. Medicine is not sending drone MDs/DOs humming around hospitals, running algorithms and checkboxes set out by the Queen Bees (IDSA, DSM, etc.).

Medicine should be an informed collaboration between Patient and Provider.

When it comes to new species.
It is very hard to (1) FIND a new species since it likely could look similar microscopically/molecularly to others and hard to isolate/culture. This highlights the value of microscopy in diagnosis however. A good microbiologist/histologist can identify pathogens and even significant abnormalities, if unknown. The "standard" clinical RT PCR, and antibody methods are horrible. No one looks under a microscope with sincerity anymore. However, This is really the best place to "start" in diagnostics.

So if you really want an accurate dx, go to an independent lab, or do the labwork yourself. It is your body and life. I viewed my blood under my microscope/computer. There were classic Lyme spirochetes. Video and photos were taken and it was pathologically confirmed. I then did acid fast and Geimsa stains. This showed intracellulars and acid-fasts (M. pneumo/C.pneumo?) as well as some type of plasmodium species. These were confirmed much later by antibody. If the sample can be taken to a good path lab where they use traditional techniques like plating and good microscopy (done by a trained human (not a computer), you will get better data.

Zachary Pettigrew said...

So given the breadth and width of these infections, and the differentials in response to medications for varying patient types, is it better to initiate a first line "catch all" treatment such as IV Levaquin, Miropenem, and perhaps Minocycline (for Myxoma and CNS protection)?

Has anyone had success with Levaquin and Meropenem? If the pt is CNS stable?

I have seen many LLMDs use cipro instead of Levo, which I don't understand due to the penetrance of Levo and its ability to conc. in biofilms.