Monday, April 13, 2009

Bartonella like organism first- Lyme second

This is a follow up on the 20 year old female who saw me in late march. She has been sick for over 14 months. She presented with a bulls eye rash and was treated with Doxy for 4 weeks. Headaches, shaking chills, joint paints and nausea and vomiting. She was told it wasn't Lyme. She managed to convince doctors to prescribe two more courses of Doxy, each prescribed for only 2 weeks with minimal improvements. She limped along for the next 9 months before seeing me. Her presenting complaints included: neck pain with swollen glands, headaches, joint pains, fevers, cognitive dysfunction and severe fatigue. She had become very forgetful and developed a stutter. The pain in her knees, shoulders, hips and neck was severe. She complained of sweats, blotchy rashes, sleep problems, irritability and depression. Her physical exam showed no rash but a grossly abnormal neurological exam. Findings included: upper motor neuron signs, lower motor neuron signs and evidence of a sensory peripheral neuropathy.

Following my usual rule: Lyme first. I prescribed Omnicef, Benemid and Minocin.

Within two weeks she was dramatically better. The Herx had lasted only a few days. She was free of fatigue, headaches, pains and sweats. The majority of her cognitive issues had improved. It was quite remarkable. The fly in the ointment was that she was experiencing intolerable heartburn. The Minocin I thought. I continued the Omnicef, superchared with Benemid and substituted Zithromax for Minocin.

Today, just 2 weeks later, all the gains were gone. Focusing on her chief complaint it was clear that the neck pain and swollen glands were a prominent feature of her syndrome. She was thrilled that she had experienced one great week for the first time in a year, but it was gone as quickly as it came. Now I looked at a new finding on her upper back. There were two small 2 cm red streaks about a scapula.

OK- what's going on?

Clearly blasts of anti-Lyme therapy were not helping. She seemed to have the Bartonella like syndrome described in the playbook of many other notable LLMDS. In this case Lyme was playing only a bit part in the scenario. Her Bartonella serology was negative. A "species" Bartonella PCR would be nice as would a blood wet mount. These tests had not been obtained due to financial constraints. In my mind's eye I could see swarms of tiny gram negative bacteria coursing through her blood and organs wreaking all sorts of havoc. I can't say if these organisms are actually a form of Bartonella or a "mystery bug."

Lyme just doesn't respond that quickly to any antibiotic therapy.The same is true for Babesia and other parasitic diseases. Minocin has exhibited the ability to suppress these small gram negative bacteria in some of my patients but not eliminate them. Other recent clinical experience has shown that Zithromax, which should have activity against Bartonella species, does not work here by itself. BUT, the combination of Zithromax with Bactrim has shown success in suppressing the small gram negative bacteria.

I considered other therapy options: Rifampin and Zithromax or switching to a quinolone- either Cipro or Levaquin; but I decided to try the Bactrim and Zithromax combo.

Several other doctors had told her she did not have Lyme disease (she was Western Blot positive for Bb). Confused by my contorted explanations and our discussion of treatment options, she asked me: "Doctor,do I have Lyme disease?" "Yes." I replied- "you definitely have Lyme disease, I just don't think that Lyme is causing your symptoms right now." "Thank goodness," she responded- "I was afraid I was just crazy."

8 comments:

PatJ. said...

Thank God for her!!!! Noo, you are not crazy and you just resuscitated from hell!!! Another big tear of joy to share!!!
So the treatment is for "bartonella" and or, for "bartonella like" organisms; really interesting! How to differentiate when the symptom arises from Lyme and when from the co-infections? guess just the experience might tell! difficult ah?
Made my day again,
thanks a lot for your post!

bobcat said...

Reading this blog and reflecting on my own experiences has provided me with a few "lightbulb" moments these past few weeks.

I have never done any Clongen testing. I have, however, tested positive for babesia duncani, bartonella henselae, Fry labs mystery bug, and CDC positive for Lyme. (if anyone is curious as to the labs, I listed them under March 20th "Lyme symptoms: Smell the coffee, before it's too late")

Anyways, what LymeMD has been reporting corresponds very closely with what I have found lately from experience with various antimicrobials.

I recently added Bactrim DS to minocycline and Zithromax. Within hours of taking my Bactrim each time, I would get hot to the touch all over my body, get a sense of flu-like malaise, and get very squinty eyes, that were bloodshot in the whites. The nest morning, I would have a terrible headache. (headaches haven't been a symptom of mine for awhile).

These symptoms appeared like clockwork, just 2 hours or so after taking Bactrim.

Cipro (with zithromax) and Rifampin (with minocycline) have never produced this kind of reaction. The only other thing that has come close was when I added Plaquenil to Zithromax one time, but it wasn't this intense.

Seems to me that what was being killed could not have been Lyme or babesia because of how immediate the herxes were. (I could be incorrect).

Because of no real response to Cipro or Rifampin, I am postulating that what I have is not the "BLO" that has been described by some Lyme experts.

All these things point to a case of a bacteria that responds to Bactrim DS or Plaquenil with Zithromax but not classic BLO treatment. This must be either the Clongen gram negative bug or a species of bartonella that never responded to any of the various other drugs.



My second personal "lightbulb" moment: What LymeMD has described as the protozoa that seems to like muscle tissue and responds to Malarone may be at play in my case. Here is why:

I recently did 5 months of Mepron (1 tsp bid) with Zithromax. I did not show much of a strong herx reaction. I also did not show much benefit at all.

Testing done during the last few weeks of that protocol showed a high titer for babesia duncani (I am questioning if another similar protozoa might cause a false positive for babesia. Perhaps this mystery bug is a Theileria, another piroplasm)

Recently I began Malarone (2 tabs bid) with Biaxin. I began getting very sore muscles in the quadriceps and buttocks. I recognized this feeling from when I took artemisinin in the past. It was noticable and unmistakable.

Also, I got this response on only 1 or 2 Malarone per day, because I had not yet worked up to 4.

Whatsmore, I began showing signs of improvement in my fatigue, and my face began to look visibly less fatigued.

This experience supports the theory of a protozoa that responds to Malarone (and possibly artemisinin) but not Mepron.

Yes, this could have been babesia, but it's odd that my night sweats did not pop up (which normally happens when my babesia is affected), and that the only real herx symptom was the profound muscle soreness. It's also odd that Mepron just a few months ago did not produce this kind of response.



The only reason I'm bringing these things up is that they further corroborate what LymeMD has been finding.

Lyme report: Montgomery County, MD said...

Clongen doesn't have a "gram negative bug." Dr. K started doing blood stains, smears and wet mounts at my request. Many TBD patients have loads of these bacteria which anyone can see. I will give Clongen kudos when the DNA sequencing of the bacteria has been worked out.

I am not allowed to perform this test in my office because a government regulation called CLIA passed some years ago forbids doctors from performing most routine labs in the office without setting up a full lab with controls. Our government at work protecting patients.

The point is that most patients do not test positive for Bartonella by any known method. And as you noted, clinical response is different than expected for Bartonella species.

Thank you for your corroboration of my experience. I have found that one Malarone 2 times per day plus Artemesin 200mg 2 per day is adequate therapy for the other unknown protozoan. This regimen also seems adequate for most Babesia cases as well.

Seibertneurolyme said...

LymeMd,

My question is has anyone who took the malarone and artemesinin as you described been retested and found to be negative on a 2nd bloodslide for the unknown pathogen? Also were they treated for the ususal 4 - 6 months that Babesia requires?

Drew said...

I'm hoping someone can shed some light on my situation.

My IgM ELISA and Western blot were reactive in May 2008 (a couple weeks after being bitten).

And again the were reactive in Sept 2008.

If I had had lyme, the doctors said they would have expected to see a Reactive IgG in Sept 2008, but there was none. Only the reactive IgM again.

Except for a couple weeks of flu like symptoms after being bitten. I have felt fine for the past 10 months

What do we make of this?

bobcat said...

LymeMD,

Thank you for clearing that up. I wasn't aware of that with regards to Clongen and what they are seeing.


Drew,

In my personal opinion, it sounds like you picked up a case of Lyme from the bite. Maybe your IgG was close to being positive but didn't quite make the cut. It could have only been one band off, for example.

Either way, if you are not having ANY symptoms, in my PERSONAL opinion, it might not be worth it to treat.

Just watch it and keep your body healthy. If symptoms pop up later, you might need to treat.

I am just giving you my opinion as a patient, because I'm assuming the doctor can't really answer treatment questions like that on this blog.

I'm not sure if that is good advice or not, it is a personal decision.

Lookin 4 Answers said...

Hello there.
wow I have not read another person really describe some of the things like Bobcat.
I have a lot in common with you around the responses in the brain and eyes and head and all to the anti protozoan medications.

I really want to keep pointing in that direction because I think it is helping get these bugs out of my head .. literally.

Looking 4

Don Z said...

Since antibiotics are synthetic chemical isolates that do not occur in organisms then the body identifies them as toxins. ABX are also simple and this is a fundamental flaw they do not have the pharmacodynamic synergy and pharmacokenetic synergy that plant medicines have. Resistance with ABX comes easy and they also disrupt gut flora and hormones.

Huttuynia cordata
Allicin
Usnea tincture
Moringa powder