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Thursday, February 26, 2009

Ignorance is no excuse!

A troubled 43 year old woman sat across from me yesterday. She told me I was her last hope. I hate it when patients say that. She had obvious memory problems and struggled to get out her words. Sitting across from me she evinced strange, periodic jerking spasms and movements of her four limbs in a random fashion. She told me her story.

She had been well until October 2007. She lived in Southern Maryland and has spent a lot of time outdoors. It started with pains involving multiple joints, especially from the waist down. Then came the brain symptoms, hard and fast. In short order she became forgetful and confused. She continues to have trouble speaking and loosing things as her memory deteriorates. A local physician found positive tests for Lyme and Ehrlichia. She was treated with 30 days of Rocephin followed by two months of Doxycyline. She started to get better on the Rocephin but all the symptoms quickly returned when the meds were discontinued.

By August 2008 she was sicker than ever. Repeat blood work showed that the IgG Ehrlichia titer was higher. And now she tested positive for Bartonella.
Her physician prescribed Levaquin for 3 weeks and 3 months of Bicillin. Once again, she was just starting to feel better when the treatment was stopped and her symptoms returned.

Over the past 5 weeks things have taken a turn for the worst. Withing the past two weeks she has seen two infectious disease physicians. One said the patient does not have Lyme and the other said he did not know how to treat Bartonella. In the meantime she has been referred to a neurologist. She has developed progressive myoclonus- muscle jerking and increased generalized pain. Her blood pressure became dangerously high with erratic swings both up and down. She has had episodes of SVT- rapid heart beat. Her sense of balance has become diminished and she has fallen several time.

Specifically, she has had no skin nodules, stretch marks, depression, anxiety, foot pain or "depersonalization." These are signs and symptoms in LLMD literature associated with Bartonella.

She has recently lost her job, working for a group of cardiologists.
She is totally disabled.

She does admit to episodes of chills and sweats.

Her exam shows an elevated blood pressure. Her mental status is abnormal. She is forgetful with some aphasia. She had the jerking myoclonic movements as described. Sensations are abnormal, notably she has absent vibratory sense in the left foot. There is poor finger to nose accuracy or speed. The Romberg test shows her falling to the right.

Current labs: Lyme WB IgM positive 23 and 41 bands, Ehrichia chaffeenis IgG 1:1024,
Bartonella henselae IgG 1:320.

This woman clearly has three tick borne infections: Lyme, Ehrlichia and Bartonella.
Clinically, she may also have Babesia. She is very ill- an understatement.

The classic signs and symptoms attributed to Bartonella and/or BLO are absent. Bartonella is a small intracellular bacteria which may at times cause brain and central nervous system disorders. How often this occurs is unknown. Bartonella is commonly seen in the homeless, HIV- immunsuppresed patients and younger patients. Classically B. henselae has been associated with cat scratch fever, enlarged lymph nodes and "occuloglandular syndrome." There are isolated reports of meningitis and encephalitis in the medical literature.

My assumption is that the majority of her symptoms are due to Lyme rather than Bartonella. Her previous response to Rocephin and Pencillin seems to support this hypothesis. She was just started on Doxycyline, 100mg twice daily before seeing me. I recommended that she increase the dose to two capsules twice daily,

The first order of business is placing a PIC and restarting Rocephin.

Ehrlichia can be a tricky business. In is also intracellular and resides in white blood cells. Such bacteria can be notoriously difficult to eradicate.

After the initial expected "herx" the next step would be to add Rifampin. The combination of Doxy and Rifampin seems to be quite effective against Ehrlicia.
Many proponents have suggested that Rifampin is also effective against Bartonella.

It is not clear which antibiotics are most effective against Bartonella. Different drugs may be more effective depending on the particular species being treated.

Standard literature claims that Zithromax and Doxy are effective.

LLMD literature claims that Levaquin, Bactrim and Rifampin are effective. I have not seen any scientific evidence to support the efficacy of these particular agents. Based on my knowledge of microbiology, I would expect Levaquin and perhaps Rifampin to be effective.

The use of Bactrim by many LLMDS has confused me. Anecdotally, LLMDS report that it is effective against BLO. I am not sure what BLO is.

After a little research I considered the following possibility. Sulfa drugs like Bactrim have been shown to have some activity against Malaria. Rather than treating Bartonella or Lyme, I wonder if these drugs have activity against Babesia species.

Perhaps in cases where the response to Mepron or Malarone is poor or sluggish, the addition of Bactrim may provide some additional benefits.

The chills and sweats certainly suggest the possibility of a Babesia species. Alternatively, Ehrlichia can cause similar symptoms. We shall see.

This patient has been kicked around by a system which can offer her no help. To make matters worse, the system denies the existence of here illness.

For some reason, this patient in particular, has hardened my resolve to continue treating patients with Lyme and TBD. I am confident that with proper treatment she will have a full recovery. Many such patients are critically ill with a disease which remains unknown to all but a few practicing physicians. Without correct treatment, she and numerous others like her would certainly face progressive disability and/or death.


dogdoc said...

Rifampin is supported in regular literature in CNS Bartonellosis as AIDS OI (in conbo with Doxy, ect). They have a set of guidelines from NIH to follow for the AIDS "coinfections" that is 2" thick. They are detailed including clinical diagnostic tips as standard serologic tests are often normal in the face of immunosuppression. So where is your manual for "opportunistic infections"? Why isn't this disease being supported?Reguardless of what name it is called and what components it has, there is a real disease here that you can find clinically and treat. If we hadn't come accross you when we did, my husband would have ended up losing everything he had worked for. The system of medicine failed to recognize the disease and treat it. It had gotten far enough his brain was not able to function. Now it functions. The disease is real. It is debilitating. And if it weren't for a few brave doctors like yourself that were willing to stand up to the medical system and be willing to treat it, we would be as they say SOL. Thank you for not making us out of luck yet.

Lyme report: Montgomery County, MD said...

Issues related to Bartonella remain very unclear in mind. Surveys of the homeless show a very high incidence of serological exposure to Bartonella. Most cases are transmitted by lice, not ticks. Exposure in the general population may be common. It rarely causing clinical illness. Most of the LLMD diagnosed cases are seronegative. We know there are many species besides henselae and quintana. I don't think there is literature to show that these other forms are pathogenic. Let me know if I am wrong.

I don't think the HIV comparisons hold up with regard to co-infections. HIV cripples CD4 cells. HIV infected individuals do not develop opportunistic infections until the CD4 levels drop to a critical point.

I do question the specific "Bart" syndrome described in LLMD sources. I don't know that they are wrong, I think it remains a very open issue. It is certainly not a selling point regarding an attack against the IDSA guidelines.

dogdoc said...

I just meant- where is your support? Where is your research funded guide to coinfections?

I know of only a few isolated case reports of disease associated with any of the other Bartonellas. As a group, even the well described ones are not a highly pathogenic lot in the overall scheme of bacteria.

I agree with your Bartonella/ BLO point reguarding the IDSA and in general. I think the clinical usefulness of describing a set of symptoms that is sometimes associated with responses to a particular antibiotic is not in question. However, I think we are guilty of the same type of thing with the IDSA in the diagnosis and treatment of Lyme and that is a major issue for them. Whether it is Bartonella or Babesia or Lyme, they want cut and dried guidelines and names. How do we get everyone to back up and see the grey area of clinically recognized, antibiotic responsive disease? That is all we want- to be able to treat people for what can be recognized. Research support would be icing on the cake. I think if we could somehow focus the fight off the name of the disease and onto looking into what the disease actually is and trying to figure out all of its components and their optimal treatment, we would be better off. We are not going to convince the IDSA we are treating Bart or Babesia or Lyme for that matter without specific serological support. In fact, without that specific support, we don't really know what we are treating either. But the out cry that has been missed is- but it is a clinical entity with a set of signs and really sick people can be treated. So lets all pull together and figure out what "it" really is (ie what component diseases and immune reactions form the syndrome) and get some studies on how to treat it optimally.
So how can we go from now to this?

Lauren said...


In you experience, is it better to treat Lyme first with multi antibiotics, treat coinfections first, or treat at the same time? Why?

Pseudonymity said...

LymeMD, perhaps you could give your opinion on a conjecture regarding BLO. From various sources it seems that BLO is blood borne, motile, extra- and possibly intra-cellular. It holds some Gram stain and holds Wright stain. Clongen could not get universal bacterial primers to amplify with BLO, and LLMDs seem to find that Bactrim provides some degree of treatment.

Is it possible that the BLO is the tachyzoite form of Toxoplasma gondii? Perhaps there is some degree of immunity supression from other infections that allows the T. gondii to propagate more extensively than it would otherwise. T. gondii is not rare by any means, but is usually asymptomatic in most individuals with sufficient immune systems, so it would not be something that would normally be tested?

dogdoc, any thoughts that you have would be welcome as well - you may very well see quite a bit of toxoplasmosis as a vet - do you perform in-house microscopy for toxoplasma?

dogdoc said...

As I deal with the natural host of Toxoplasmosis, I see a fair number of oocysts and occasionally tachyzoites in tissue preps, ect.

To me BLO and the visualized blood organism are different. BLO is a term I believe originating from Dr Burrescano describing a set of clinical signs in a subset of patients that responded to Levaquin and Rifampin that was hypothesized to be associated with some new Bartonella like coinfection. I beleive the microscopic findings became associated with the BLO lable later by others who assumed that it what was being seen.
I can say from what I have seen of my own organisms in my blood, that I would not be suprised if they end up being a similar parasite to Toxoplasma. They are considerably smaller than the typical Toxoplasma tachyzoites. I have studied them regularly in my blood and I do agree with others, when you let them slow down a bit, they do have a tumbling like quality to their motility. However, they are so small that it is difficult to see a lot of detail in their structure. They are the size one would expect of bacteria- however, one should be able to sequence them if this were the case. If they were a parasite in a similar class to Toxoplasmosis, we might expect to see some efficacy with the sulfas, antimalarials like mepron and malarone, clindamycin, etc. However, it may be more suppressive than cidal. Overall though, we really need an identification of this organism. Lots of conjecture and not a lot of facts exist.

Lyme report: Montgomery County, MD said...

Dr. K is working with universal primers for protozoa as we speak. He has also talked about the tumbling motion. Perhaps it is the same germ rather that two distinct germs.

Bactrim may work here after all!

Pseudonymity said...

dogdoc, as far as I can find, Bartonella is usually in the 1um range, coccobacillus morphology and jerking motility. Toxoplasma tachyzoites are ~2-5um, rod/cresent morphology and a tumbling/twisting motility. Do either of those come close to describing what you are seeing?

The report of the PCR failure from Clongen along with anecdotal reports from Lyme patients regarding symptom improvement with clindamycin, macrolides and folate synthesis inhibitors is what got me thinking on the T. gondii track. Lots of anecdotal reports of azithromycin/atovaquone treatment producing results, but taking many months - I would think that Babesia with a seronegative presentation would be responsive quicker than that.

Bactrim with clindamycin and/or atovaquone should work for toxoplasma I guess, but as far as I can tell pyrimethamine/sulfadiazine is preferred despite the riskier adverse effects. Hard to say since treatment is most often directed towards immunocompromised patients where toxo is a potentially fatal illness.

LymeMD, will you report back on your blog when Dr. K has finished with trying to get a parasite PCR from the bug (or hopefully a 18S sequence)?

Lyme report: Montgomery County, MD said...

Comments are intriguing.
Perhaps we are finally closing in on the identity of the "BLO."

Pseudonymity: You appear to be a well informed physician.

If you have not joined ILADS, your support would be very helpful.

Pseudonymity said...

LymeMD, my sincere apologies if I misrepresented myself. I am not a physician, in fact I lack any formal medical or microbiology training. I am simply a person with a personal interest in helping my wife and son who are chronic Lyme patients. If I do post any information that is incorrect or misleading corrections would be appreciated.

It is probably for the best that I am not a physician, if I was I am not sure that I would have the courage and fortitude to pursue the course that you and other ILADS physicians have. Your choice of action comes at a personal and professional risk and I would like to thank you for accepting that risk, and even more so for making your thoughts and comments available outside your office on this blog.

Seibertneurolyme said...


Just wanted to add a comment. When Clongen found the "mystery bug" in hubby's blood in November he was on a 5 drug combo -- Bactrim was one of those 5 meds and he had been on it since February at that time. Is still on that med and is still symptomatic so I am assuming he still has the "mystery bug."

The other 4 meds he was on were Alinia (4 months at 500 mg daily and 4 months at 1000 mg daily). Also on low dose Minocycline and low dose Zithromax and Rifampin at 600 mg.

SKBennett said...

The reported changes in blood pressure might be an indication of inflammation-infection of the brain stem. Genomed ( Dr. Moskowitz) is conducing a clinical study to determine the effect of use of angiotensin receptor blockers, such as Cozaar, on brain inflammation resulting from West Nile infections. A clinical trial for LYME patients (having clinical symptoms indicative of a brain infection- inflammation) using angiotensin receptor blockers might be initiated. I basis this suggestions on the following passage and knowledge of the results of Genomed clinical trials.
Bacterial infection lowers tissue oxygen tension. Bacteria either consume oxygen themselves, or require an anerobic environment to replicate. Along with tissue hypoxia, bacteria produce lactic acid, lowering tissue pH. (An exception are the urease-producing bacteria in the urinary tract). Under such reducing conditions, sACE on the surface membrane of macrophages or T cells should become activated according to the hypothesis presented here.

[0077] Angiotensin II stimulates the production of the antiviral protein interferon-y from T cells [180], which interferes with viral replication. Angiotensin II helps promote apoptosis [181], especially of virally infected cells [182], further limiting viral replication.

[0078] In addition, sACE may permit tight cellular interactions. Binding of the N-terminal domain of sACE on one cell (macrophage or T cell) with the C-terminal domain of sACE on another cell (macrophage, T cell, or endothelial cell, for example) may promote specific cell-cell binding (FIG. 11).

[0079] Overactivity of ACE has been associated with autoimmune diseases such as rheumatoid arthritis [82, 183], lupus [82, 184], and fibromyalgia/chronic fatigue syndrome [185]. We have observed gratifying clinical responses to angiotensin II antagonism in patients with T-cell disorders such as psoriasis (FIG. 12) and alopecia areata, as well as viral diseases characterized by an overly exuberant host response such as West Nile virus encephalitis (Table 3). A similar approach may work for SARS [147]. US Patent pub. no 2006 0135426.

Lyme report: Montgomery County, MD said...

Most LLMDS have believed that blood pressure fluctuations are do to autonomic nervous system dysfunction. Sympathetic and parasympathetic nerves regulate many "automatic" functions including regulation of blood pressure. Other metabolic diseases associated with neuropathy such as diabetes are known to at times to cause autonomic nervous system disease.

The importance of ACE in various infectious and autoimmune disorders is worthy of research. Gamma interferon is a Th1 mediated cytokine which is proinflammatory and cytotoxic. This cytokine is expressed in Lyme disease and other intracellular bacterial and viral infections. There is a befuddling vitamin D connection here as well.

Although ACE inhibitors have not been used to my knowledge, the ARB-angiotensing receptor blocker Benicar- same class as Cozaar, has been used quite a bit. It's popularity originates with the Marshall protocol, but its applications have branched out in different directions.

Some patients appear to have beneficial repsonses to Benicar. I would say there is no evidence to support its routine use.

Girly said...

I have been seeing this doctor for the past month in half named Ruth Krizs who has been great. She has been working with me on getting my levels back to normal such as my vitamin D, Iodine, thyroid exc. I have been too many doctors and she is the first doctor who has treated me without using synthetic drugs which to me is great. My last blood test was to Fry Labs which of course since I’m writing this came out positive. Ruth Kriz has explained to me that I have small traces of bartonella and that I have to take two drugs one called plaquenil to flush this parasite out in the open and another antibiotic to kill it. What gets me nervous is that she states that I will feel like crap. She explains that where ever this parasite is living is where I will have the problems such as flu systems, headaches, inflammation, and rash exc. Has anyone taken these drugs and actually been cured. Ruth has not been able to state how long it will take to cure me. She stated that some of her patients have been on these antibiotics for over six months now. I am not big on factory made drugs and to be on and antibiotic for that long scares me any feedback would be greatly appreciated in regards to the drugs I have to take and side effects and why I can’t take these results to another doctor for a second opinion.

Engtch29 said...

Girly: If you're still on here, I'd like to chat with you about these topics.

Anonymous said...

My 16 yo son has lyme and has been on amenocycline and zithromax for a month. Tindamax was added for cysts. He had fevers for a few days every month for 3 months and the thir round was quite severe and frightening including an episode of blindness (about 5 minutes). He feels fine now. The specialist we are seeing comes highly recommended but I am beginning to question if he really needs this much medication. Isn't the TIndamax for Bartonella? He tested negative for that. And I worry about the effect on his bone development of months and months of a cycline drug. Am thinking of stopping the meds once he reaches 3 complete symptom free months. Advice or insight are welcomed.

Patrick said...

Ruth Kriz got rid of all my IC symptoms. Mopping up the last of my Lyme now. multiple Fry tests show improvements, so hard to argue with the results, especially when every other doctor says there is no treatment other than pain management. So yeah, Ruth rocks in my book!

Rebeccam said...

Pkaser I am on a similar protocol, can you talk?