A new Lyme med?
This 48 year old female was not one of my best success stories. Despite this, I had helped her a great deal. Two years ago she came to me a train wreck. She had incapacitating total body pain, cognitive impairments and abdominal pain. She had seen rheumatologist who had treated her with immunomodulators including gold and prednisone. Nothing had helped. Antibiotics had caused strange reactions- numbness and tingling in her mouth. Numerous doctors had no idea what was causing her abdominal pain and myriad other symptoms. She had been sick for over 20 years and was at the end of her rope.
The abdominal pain was easy. I have found that gastroenterologists and surgeons make this same mistake over and over again. She had classic right upper quadrant abdominal pain with a tender gallbladder(positive Murphy sign). She had had numerous CT scans and ultrasounds which were negative. Her HIDA biliary scan was normal. The CCK injection given during the test reproduced her symptoms. This is key. If hormonal stimulation of the gallbladder reproduces the pain- the gallbladder is diseased. A clinical rule which has served me well over the years is simple: Treat the patient, not the labs or ancillary tests. The first surgeon I sent her to refused to consider surgery. She was an obvious hypochondriac. Besides, the GI specialists didn't think she had gallbladder disease: IBS. The second surgeon performed a laparoscopic cholecystectomy. Bingo. Path showed chronic cholecystitis.
In my experience, Lyme frequently causes gallbladder disease. She felt better and was impressed right off the bat that I had figured out one of the mysteries. Her labs made TBD a no brainer. She had positive Babesia serology from Labcorp. We began a long odyssey of treatment. There were ups and downs. Antibiotic side effects and intolerance led to long periods of no treatment. Symptoms invariably relapsed. The fibromyalgia and joint pains were somewhat refractory to therapy. Her cognitive improvements were steady. She suffered with bouts of serious depression which complicated her care. Along the way she had two courses of IV Rocephin. They were not as effective as I hoped they would be. Recently she came into my office very concerned. She told me that she had been coughing for two months- she smokes 2 packs per day- she knew that she had lung cancer. My intuition- its not cancer. The Chest Xray showed a mass. She was a wreck. I pointed out that it might be an infection. I ordered the CT, PET and a needle biopsy. The results were non-specific inflammation. No signs of cancer. It looked like a lung abscess. I thought it might be related to Bartonella. I started her on Cleocin and Levaquin. She collapsed in what looked like the mother of all Herxes. She was admitted to the hospital. She saw all the king's horses and all the king's men. They ultimately decided it was indeed a lung abscess. They were unable to identify a causative pathogen. The infectious disease doctor started her on Invanz. Its a new beta lactam antibiotic given once daily. It seems to kill everything that has a cell wall: gram positives, gram negatives and anerobes.
She was in the hospital for 6 days. Something magical happened. I saw her today. She was more bright and chipper than I had ever seen. There was almost a glow of wellness about her. This is the best she had felt in 20 years!. Virtually all of her symptoms had vanished.
Could this drug be a magic bullet that wipes out Lyme and the mystery bacteria crawling around in the bloodstreams of my patients?
Perhaps some other LLMDS should look at this and give it a try. I am trying to avoid more controversial therapies at the moment. This new antibiotics was only approved in the beginning of 2007.
PS: If it appears that I only write about my success stories it is because the other patients are a work in progress. I never give up- and neither do my patients.
27 comments:
Doc- you write about all different patients successful and unsucessful. You write real life- ups, downs, not sure I would do that again, wish I had thought of that sooner, ect. One could hardly accuse you of sugar coating anything. However, if you were trying to avoid controversy, writing about all this stuff on international internet is not the best way. All of this is controversial. Adding a carbapenem to the list of things wouldn't make or break anything.
However- as I have accepted the controversy and chosen my comfort zone within it... do you know when this patient improved within the last two treatments? Could be sequence of what was given also as reaction to the first round indicates doing a lot of something. Sounds like short courses were effective also. Perhaps start singly and ramp up slowly? I'm sure Invanz is a fortune- it can be used IM for a week.
By the way, found a nifty multi-drug interaction checker on medscape. Have to be registered as a health professional. Can input multi drugs in a patients regimine and get a print out of all known interactions. It is new in "drug reference".
What is the drug currently approved for?
Excellent! Everything that has a cell - wall, gram positives and negatives. How long of a course do you think it would take?
Have you used Tygacil/tigecycline at all in your practice?
I have asked this before and would like to know the answer. It might sound silly but I went through such a serious herx with head to toe pain, fever, sweats, rapid heartbeat and other that I wondered if I could die. I did not think a body could take on that much pain without shutting down. Is that possible? It is so scary and I know others have wondered the same. Can a very, very serious herx kill you and when should a patient contact their doctor during a serious herx?
Have LymeMD order you Genova P450 testing to look at each of your pathways of detoxification in your liver. Each of us are genetically different. If a certain pathway is somewhat weak, a drug that uses that pathway may end up at higher levels in the body. If that pathway metabolizes the drug faster than average, you may not end up with appropriate blood levels.
Many drug deaths could be avoided if people were tested ahead of time in this way.
Your doctor could theoretically have mixed a number of drugs that disabled a pathway practically completely and led to extreme toxicity which you call a "herx". Some may have been a herx.
Every conscientious doctor administering multiple drugs to sick patients, along with herbs like artemisinin, should do this as a precaution and for insight in what combos to avoid. An ounce of prevention, as they say...
Any luck identifying the mystery bug? Since I've been infected, 3 years, one constant has been a fever, bronchitis cough and severe fatigue. I've been positive for the Lyme bacteria and babeosis and have been treated consistantly. I have lyme arthritis but I've always felt there was something else. My bloodwork is abnormal. Is it in the burkholderia family or any clues yet? I hope that is not it.
Bitten- I'm sorry, I must have missed the question. The original herx reactions were described in the literture for people undergoing treatment IV with antibiotics for diseases like syphilis and relapsing cever. In these conditions, huge numbers of bacterial organisms can be present and yes the reactions sometimes caused shock and death.
I know I speak for Doc here in that you should ALWAYS call your doc immediately if you think you are having a reaction of any severity or even think there might be. Yours sounds like one that you should have called him for. I know my first herx was very scary and I knew what to expect. Doc is very adament about backing off stuff to avoid severe herxes. I think we patients screw it up a lot by not telling him so he can advise. I know I have been guilty of this a number of times.
On herxes and drug reactions in general- I think we all need to be careful with all of these things, especially in any combos (that includes those on pysch drugs, pain killers, blood pressure medications, herbals, ect). Interactions abound and you cannot always test for them or predict them from known literature.
My husband, the really sick one, herxes badly from everything that works. We know they are not drug interactions or metabolic issues because after a period of time, he tolerates these medications well and really improves on them. For him, we get a severe reaction from the first or second dose- we stop and wait until he feels better and then try again. After a few times, we don't get a severe reaction to the test dose and can get him on the medicine regularly- feeling a bit yucky for a week or so and then rapidly improving. He has so much stuff growing in his system, we just can't seem to kill it all at once without toxicity. I think you need to be careful. It is foolhardy to put yourself in the hospital trying to tough it out. Besides- you might have a drug reaction or toxicity. Thats why its so important to call your doc right away if anything happens when you take your meds. I had a drug reaction- I called doc, he knew exactly what it was, took me off immediately and I was fine.
jenbook13.... Please let the doctors answer a patients question. You should not be on this site. Get your own blog please.
Thank you Dog Doc. Yes, I had the same kind of herx as your husband and it was definitely a reaction to massive bacteria die off. I am very reluctant to call a doctor after hours even if I am in such shape. I had one herx reaction after infected for 6 months. It was on IV roceften. This time, over a year later, the herx was so much more severe and effected so many different systems. I went on a support group web site in the middle of the night to ask someone. No one knew. I toughed it out until office hours opened but I wondered how or if my body would continue to take such pain,fever, sweats and else before it would shut down. One antibiotic was taken away and things got better but it was a frightening experience. I appreciate an answer from a doctor. Jenbooks please never reply to anything I post again.
I will not post again if I am annoying LymeMD's patients.
Please read this article:
http://www.ph.ucla.edu/EPI/bioter/ciprodownside.html
It is foolhardy to think that these powerful drugs, especially in combination--and *especially* if they might tax specific liver pathways that you may be genetically somewhat weak in and could test for--only cause "herxes". Normal healthy people have devastating reactions and no, not because they all have latent lyme.
To decide yourself in the middle of the night that it's a herx, is not sane or wise. Drugs have side effects, especially powerful drugs in combo.
As for dogdoc's husband, it is likelier his body is adapting to the drug, the body is made to adapt after one exposure to "toxic" chemicals. A dose of ozone or benzene that will kill a rat that has not been primed by a prior exposure to ozone or benzene, will NOT kill the rat that has been previously exposed to a lesser dose.
That's what our bodies do, they are built that way. Therefore dogdoc's husband is less likely to be having an initial herxheimer that goes away after a few doses, and more likely to be adapting to the drug. This happens commonly with antidepressant therapy which is why they tell patients to stick with it through the initial side effects which often go away over time.
Okay, I wish you all well. I'm not going to post here and upset the doctor's patients. I hope they all improve and get better. Good luck.
I think more patients have lung issues from bart or mycoplasma or the mystery bug than are aware of this presentation.
Hubby does not and never has smoked. He has pulmonary nodules and bilateral hilar adenpopathy that has been followed by CT scans and PET scans for over 5 years now. Some additional nodules have developed and others have shrunk in size.
A bronchoscopy only found inflammation of unknown etiology. So far we have been resistant to doing a surgical biopsy. Tests for sarcoidosis have been negative. Hubby has no obvious symptoms from this pathology.
The hilar adenopathy originally showed up on a routine chest x-ray. Further testing was done when he developed a cough and sleep apnea.
The cough went away with babesia treatment -- but that was low dose quinine and clindamycin. It is possible the clindaqmycin was working on bart or mycoplasma or the mystery bug. I could be wrong, but I don't think his pulmonary symptoms are from babesia.
jenbooks13-As a regular reader of this blog, you are not annoying me. I think good sound information is always welcome. Although, some people tend to have a problem with it if it doesn't fit into their 'scheme of things'. Keep posting!
I often wonder what would happen to me if I came down with something that required a medication that, in turn, cured my lyme and whatever infectious agents I have.
I would be curious to see if this patient relapses or if she is, in fact, cured.
IF she is cured, then sign me up!
to JennBooks if you are still out there.
That link is fascinating.
I have to tell you that immediately upon beginning just 200 mgs of doxy a day, I fell into a depressed stupor, the likes of which I have never seen.
A year ago, before contracting LYME, I was given Cipro or a simple UTI. My UTI went away but my symptoms remained for five months. Did the antibiotic trigger persistent UTI symptoms? I've heard of others with the same complaint.
Mercifully, my body managed to heal. Now if I can just heal this LD, I'd be thrilled. I am up to 300 mgs of doryx daily and also take biaxin for good measure.
Twice I've been off and guess what, dizzy spells galore. I can function while I'm on them, but I'm not the same pleasant person I once was. I would love to be drug free, but with some stiffening of the joints, IN SPITE of treatment, it's not likely -- best I can tell.
we do need a new class of THOROUGHLY tested antibiotics.
For the quality of life I have now, vs. getting well and staying well, I would honestly try it.
Seibertneurolyme I virtually always have chronic bronchitis (what my GP says) I know it is something else. Low fever and it cycles. Just a horrible dry cough, hard to breathe, fever. I also have IC but that is something else. You think that is Bart? Maybe. I do have it. The coughing wears me out and I feel as if I cannot get enough air.
Yes, jenbooks13. As a patient of LymeMD you are annoying me!
Thank you Jenbooks13. I am LymeMD patient and you are annoying me so you will be leaving us. You seem to have your own blog to take care of good luck.
You just can't help yourself can you. IT DEFINITELY WAS A HERX. DID NOT START IN THE MIDDLE OF THE NIGHT. I'M SURE DOGDOC DOES NOT NEED ADVICE FROM YOU ABOUT HER HUSBAND. MY LORD WHOIN THE HELL DO YOU THINK YOU ARE. ANNOYING US. ABSOLUTELY. THIS IS NOT THE RIGHT BLOG FOR YOU. BYE JENBOOKS13 GOODBYE
I wanted to know if there were any thoughts to the "clone" spirokette that Dr. Lund found in October of this year. He has a paper out and suggests it may be the reason for more serious disease. LymeMD any thoughts? A clone? What does he mean? I have experienced a true herx reaction as a result of antibiotic treatment, nothing else, and it can be scary. Herx's are well documented. Any comment on the "clone" would be appreciated.
I think what Jenbooks13 is trying to say is that people do have reactions to antibiotics, that the symptoms one gets from taking an antibiotic when they have lyme is not always a herx, it can be a allergic reaction or a side effect and it is better to be safe than sorry by checking it out with your dr. A member of my family, who does not have lyme, reacts strongly to certain antibiotics, these reactions are not a herx.
I am not saying that you people who post on here do not herx, I am just saying be careful that what you call a herx is not a serious reaction or side effect of the medication.
The thing that should be noted is that if you don't have LD, you have no reaction whatsoever to antibiotics in general. For some reason -- and they call it a herx reaction -- LD patients will have adverse reactions to antibiotics.
Am totally open to other treatments. Antibiotics seem to be all the few docs who treat Lyme have. Everyone has a different cure, making it all the more difficult for the doctor and frustrating for the patient.
My first round of doxy was 10 days for a bull's eye rash. The only symptom I had was an upset stomach. After a steady decline over three months and a positive Western blot, I was prescribed doxy again. Suddenly, I had no memory, my back was on fire, and my bones creaked when I walked. So, yes, you're right every person is unique and responding to a drug varies.
But the first round of antibiotics caused no ill effects other than stomach upset. Once the Lyme and friends were established a few months down the road, I had adverse reactions to the antibiotics.
I don't by any means WANT to take any drugs at all. If you have other options, please spill!
I enjoy and welcome all information . End the end the immune system has to prevail somehow to overcome it. Antibiotics hopefully helps us along.
yes, but she said it so many times. We Lyme patients are well aware of what a herx reaction is and what an adverse reaction to a medication is. I check my medications carefully for interactions. There is absolutely no comparison, none. I have the feeling she has never had one because if you have you will not forget it and it is so much different than a drug interaction. It is a whole body, whole system revoltion and your body is in such a toxic state that the pain is unbearable as well as other. No, not on the same level at all as a drug interaction. Most lyme patients are highly informa=ed and can certainly tell the difference. The literature supports it and giving a link to scare people about Cipro does not good. I doubt she is "cured" as there is no cure and who knows if Lyme is what she had. Money, she had and doctors will take that. Give us a little credit and if you don't let our doctors deal with it. Thanks
Hey, it's one thing to say I'm annoying you with my words of wisdom ;) and another to suggest I did not have lyme and have money to burn.
I had a 5 inch bullseye on the back of my knee in the summer of 2000 two weeks after a visit to the Connecticut shore area where bb and babesia are epidemic and during which I walked in a garden where it turns out deer like to eat the flowers.
I had a sky high Elisa, a CDC-positive western blot on Stonybrook, etc. I had a classic presentation and unfortunately I got a very virulent strain that disseminated quickly to the CNS etc.
I know what a herxheimer is, they're no fun. OTOH every statement I've made is informed.
To the poster who did okay with doxy initially and now is having more problems with it, I'm sorry it's hard on you...it probably is a herx, as you note, although one must consider that the endotoxin(s) generated by BB are so highly immunogenic and shift the system to such an inflammatory state that there are all kinds of new problems that crop up--more severe allergies, sensitivities, rashes, hives, drug reactions etc.
Re: adaptation to dose, sorry bitten but the science is there and that's what it reads like in dog doc's description, and such adaptation is a common phenomenon.
Re: Luft and the clone, he's just talking about asexual reproduction. It's not a code word for anything. Basically he's saying he's isolated a particularly virulent strain here in U.S. and North America but from my understanding that is not such big news and there are several highly virulent strains, and it really doesn't solve the problem of a soup of bugs anyway.
Good luck all. I will only post again if someone makes silly assumptions about me--and no, I don't have a blog of my own. I hope I gave you some food for thought and that you all free yourself of the NIGHTMARE of lyme. Meanwhile, carpe diem even if you're having a crappy diem cuz it's the only diem you've got. And even on the crummiest lyme day life is still a blessing.
So, any news on the patient treated with Invanz? Any attempts to treat anyone else with this drug?
JenBooks - Thanks for the insights. We're all on the same team here. Maybe we just have different ways of getting there.
Are you well now? How long did it take?
You can post all you want in my book. Freedom of speech is still alive and well.
My daughter was on invanz and tygacil for 3 months and it seemed to help but IV rocephin was best. I tried 3 months of IV rocephin and tygacil and IV rocephin was best. In fact, I have seen symptoms reappear and then finally go away. We need to treat long enough to see the amazing vanishing act of symptoms.
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