There are numerous factors which seem to determine how each patient will respond.
If patients are to improve I believe that doctors need to try different approaches. The one size fits all method works poorly. A 43 year old woman was seen several months ago for a second opinion. She was diagnosed with fibromyalgia and CFS. She had been very physically active. She was a personal trainer. Now she was a wreck. She had typical signs and symptoms of disseminated Lyme and neuroborreliosis. Her SPECT showed left frontal lobe hypo perfusion. The brain MRI was normal. Her exam had neurological abnormalities and her labs confirmed exposure to Lyme. She was treated with Ceftin and Minocin. There was a tolerance issue and a bad Herx. She was given a Medrol dose pack and switched to Biaxin and Plaquenil. After two months she felt even worse. We started IV Rocephin. The pain was improving but the cognitive issues were unaffected. Symptoms of sweating in cycles suggested Babesiosis. Mepron and Artemesin were added(the Biaxin and Plaqueil had never been discontinued). The sweating went away but otherwise she felt worse.She only took this regimen for a month. There was a worsening of cognitive functions- more memory loss, and an increase in neuropathic symptoms and pain. She was then treated with only Rocephin: still not better. IV Zithromax was added- then she started to improve. It was the IV Zithromax that was making a difference. The Rocephin was stopped and she continued to improve. When Flagyl was added she again felt worse. The treatment was changed: IV Zithromax. Just Rifampin was added and she was now really improving. She was tired- but able to work. Her cognitive dysfunction was clearing up. Much of her pain was gone. (I had prescribed Levaquin but she didn't take it after looking up its side effects). I saw her today 5 months into treatment. The hangdog look was gone. She agreed to try the Levaquin. I hope it helps.
She had Lyme with neurocognitive deficits and an abnormal SPECT scan.
The only lab data I will add is that she had a high C6 Lyme peptide index and that her blood smear at Clongen showed motile gram negative coccobacilli.
What have I been treating her for?
Do people really have Herx reactions which go on for months?
If a patient Herxes for more than one month I think it is time to change the treatment. The immunological consequences of a prolonged "Herx" can't be good.
Bacteremic. Yes. With what? Has Fry found the answer before Clongen: We shall see.
Babesia- or an immitator like Toxoplasmosis, as exists in immunosupressed HIV patients? This has been suggested as a possibility.
Is there really Bartonella and or Mycoplasm. We don't know.
Why didn't Rocephin work while Zithromax did?
There are lots of questions and still few answers.
As a clinician all I can do is report my clinical results.
Again, one size does not fit all.
13 comments:
This is a great example of a good LLMD--not giving up on the patient and being willing to try different things!
Hats' off to you.
I am anxiously awaiting the news of what the motile gram-negative bacteria are--hoping Clongen can figure it out!!
Do you ever use Avelox or Factive? I did 9 months of a Rifampin combo, 4 months of a Levaquin combo, and still no eradication of "bartonella/BLO". My LLMD keeps people on combos for a long time. The symptoms went away mostly on Rifampin, but were still very subtly there. So we tried Levaquin. I had an immediate positive response the first two weeks, after which all the symptoms came roaring back! The twitching, the anxiety, panic, insomnia, the sore soles/feet/shins, weird rashes after showers. I hit it HARD, for a long time. Avelox, Invanz, and Gentamycin have now been suggested. I wonder if you have an opinion on this, or something else you've seen work?
Just wanted to give Dogdoc a pat on the back. I actually try and research your posts on the net. My background is Technical can I keep can I keep up with you? “Not” but in fact I have learned a great deal thanks.
I was wondering if anyone has had any experience with Artemisinin or Artemisia annua? I think Artemisinin is a drug used to treat multi-drug resistant strains of malaria and parasites in much of Asia.
http://en.wikipedia.org/wiki/Artemisia_annua
http://en.wikipedia.org/wiki/Artemisinin
http://www.vitacost.com/NSI-Artemisinin
Great job doc. We need more LLMDs who treat like this...with long term antibiotics, switching up the combinations until you finally have a break-through. This disease is hit or miss, as far as treatment goes, but if you continue to throw everything in your arsenal at the infections, you will eventually get a "hit" and help your patient.
Keep up the good work.
God bless.
It is not Bartonella. It is not a bacteria currently associated with the Lyme borreliosis infection complex. It may be related to Pseudomonas species. It is a very resistant bacteria. Specific information is not available yet.
If Ivanz has been suggested I think this could be beneficial. If your MD will prescribe this drug I would like to hear if it helps.
Can gram-negative coccobacilli be typed? You found my sister's blood full of these critters, but she doesn't yet know what kind of g-n cocco's you found.
My research found that there are two particular gram-neg coccos that may be tick-borne: Brucella and Francisella...leading to brucellosis and tuleremia.
I also found in my research that Invanz and Tygacil treat gram-negs (plus gram-positives and anaerobes).
What do you think about all this?
Awhile back you said there was no evidence for the oral form of Zithro being poorer than IV form. Does this patient outcome make you think IV may in fact be better?
My LLMD swears that this is the case.
Lyme MD,
Just curious. Since you have been doing these bloodsmears on your patients, what percent of the smears show the mystery bug? 25%, 50% or more?
I have the same question as seibertneurolyme: Can you give us a guestimate of what percentage of Lyme patients have the bacteria (gram negative, rod shaped) in their system? Are they all rod shaped? Have you seen them in acute cases that were successfully treated early or just chronic cases? I have also been doing some research on bacteria that fall into this species. I found an interesting article from a French (I believe) research center where they found 47 different gram negative, anaerobic, rod shaped bacteria in rotten beer and yeast. I did not buy the complete article so I do not know why they were studying them or what the outcome was but it was from 2008. Could that fit in with the gluten diet helping some people? Just asking because I am in the science field but not a biologist or MD or epidemologist. I just found the abstract interesting. Again, can you say a % of your patients that carry this "mystery" bacteria? Thanks for all your hard scientific work. I know your research with Dr. K. will result in significant findings, I just know it! If you need volunteers to supply blood, tissue, biopsies or other you can count on me. I would be honored to contribute and I know my blood is "abnormal"
What about bacteria that changes from rods to cocci as it grows? Just guessing in the genus Janibacter? I think it is found in the midgut and is gram negative and it suppresses the immune system. That is my 2 cents and I'm not a doctor or biologist either so I may be way off.
Sorry I haven't been around much. Between work, research, family, ect I haven't had time for anything else. By 1 or 2 am I just need to sleep. I think malariasite.com has some good info about art derivatives as does the WHO. For the rest, perhaps tommorrow will yield more time. Sigh.
IV Zithro:
Standard textbook information claims the oral form and IV form are equivalent. More specifically they state that there is no "evidence" that one is better.
Doctors treating routine pneumonia have found that IV Zithro works better going back more than a decade. If we are dealing with significant bacteremia (we are) and Zithro has some effect against this organism, then is should work much better when delivered directly into the blood stream, avoiding adsorption through the GI tract and metabolism through the liver.
Regarding Bartonella, please see the following:
Transmission of Bartonella henselae by Ixodes ricinus
http://www.cdc.gov/eid/content/14/7/pdfs/1074.pdf
Molecular evidence of Bartonella spp. in questing adult Ixodes pacificus ticks in California
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=87914
Bartonella Species in Blood of Immunocompetent Persons with Animal and Arthropod Contact
http://www.cdc.gov/eid/content/13/6/pdfs/938.pdf
Bartonella sp. Bacteremia in Patients with Neurological and Neurocognitive Dysfunction
http://jcm.asm.org/cgi/content/full/46/9/2856
Bactericidal effect of antibiotics on Bartonella and Brucella spp.: clinical implications
http://jac.oxfordjournals.org/cgi/content/full/46/5/811
conclusion: yes, Bartonella can be transmitted by ticks; yes it can cause at least some of the symptoms LLMDs are attributing to Bartonellosis; and it might need fluoroquinolones or gentamicin to be eradicated (any way to reduce ototoxicity? see: http://journals.lww.com/co-otolaryngology/Abstract/2003/10000/Ototoxicity__bioprotective_mechanisms.4.aspx
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