Another young woman came into my office with swollen knees. The first doctor she saw, an IDSA doc had no trouble making the diagnosis since Her Lyme ELIZA was positive and she had 13/13 Lyme Western Blot bands present. The ID doctor presented her with 2 options. She could take a 30 day course of Rocephin or she could go on low dose Doxycyline. It was sort of left up to the patient. One has to ponder how these 2 options are interchangeable. Rocephin, a cell wall inhibitor kills only Bb in the spirochete form. Doxy, a protein synthesis inhibitor kills Lyme in the spirochete and the L-form. It always troubles me that the "experts" are unaware of these basic facts. From my perspective it makes more sense to use two antibiotics which can synergistically attack the spirochete and L-form simultaneously. The patient has acute, active synovitis with swollen, inflamed joints. In chronic Lyme arthritis it has been shown that L-forms in the synovial lining are the problem. In acute Lyme arthritis It appears spirochetes are the culprit since such patients typically respond well to only IV Rocephin. In this case IV Rocephin is a reasonable treatment choice. Oral therapy with something like Amoxil and Doxy is also a reasonable option.(There seems to be some controversy about the combination of Amox and Doxy. They are thought to have an adverse interaction. I do not think this is the case. One can use Amox and Biaxin or Ceftin and Doxy if one prefers). The ID docs, as I am oft told, "don't believe in co-infections." This I do not get. I re-tested her. She was positive for Babesia duncani as well. She has no symptoms of Babesiosis.
After 4 weeks of oral combination antibiotic therapy, she came in today about 50% improved. After weighing the options, we decided to go to IV Rocephin for 30 days. Then I looked at the Babesia issue: She is young. She has no symptoms of systemic Lyme disease. She only has knee involvement. Her immune system may be functioning well, at least her CD57 level is normal. In this case I decided to treat Babesia by standard-text book recommendations. I ordered Mepron and Zithromax for only 21 days. Perhaps her immune system could truly eliminate the Babesia but I thought it would be better to treat-prophlactically. After all, chronic Babesiosis when it does occur can be a beast.
I decided to do a little exam of the nervous system. I continue to find that nearly every patient with Lyme disease has some peripheral neuropathy. As with most patients, there was a little stocking/glove loss of pin-prick sensation and a little decrement in vibratory sensation in the feet.
I am now fairly certain that these findings are due to a Lyme induced autoimmune process. Usually the autoimmune process is minor, but it is something that I have learned to keep a close eye one. It can worsen due to Bb infection but it can also worsen as a result of Lyme therapy. I look carefully for symptoms of progressive numbness, tingling and weakness. I examine for a worsening sensory exam. And when I find that previously existent deep tendon reflexes vanish I am particularly concerned.
When I see an increased in autoimmune neuropathy I quickly back off therapy.
I have wondered if some antibiotics have a tendency to cause more autoimmune reactions than others. This is an observation; I cannot back it up with any data.
I have observed that these reactions seem to occur more frequently when Minocin is used early in the course of therapy. I don' think Doxy does it. It seems less common with Amoxil, Rocephin, Biaxin and Zithromax.
So for what it is worth I now avoid Minocin as a first line agent.
On a final note- I am increasingly impressed with the effectiveness of Tindamax.
For example, when a patient responds rapidly to the combination of Amoxil and Biaxin, adding Tindamax a month or two later frequently makes a huge difference.
How often do you observe patients completely recover? What is the percentage breakdown of complete recovery, those who get "stable", and those who don't respond well?
What if the synovitis has been present for over 5 years?(ignored after getting a negative ELISA in 2005). Also patient develops angioedema and sometimes laryngeal edema with any long term antibiotic therapy?
Lyme recently diagnosed but have been sick on and off for over 20 years. Seeing a Lyme Literate integrative MD and doing ok with alternative therapy but musculoskeletal symptoms increased with treatment.
Immune system definitely compromised, lost an adrenal gland in 2006 due to Conn's syndrome. I am a physicians worse nightmare.
I am progressing with current treatment but find it interesting you see worsening of neuropathy with treatment....this is such a relentless disease.
I am sorry to post this here as it is irrelevant to this post but I think you may be interested in this doc and I need a second opinion from an LLMD (which are few and far between) if you would be so kind. I called my doctors office today to notify them that I was having a serious brain herx yesterday from plaquenil & zithromax which I recently started. the receptionist called back and left a message on my machine with instructions which included discontinuing the plaquenil because I was having bad side effects, starting doxy again & this is my question; she said they were calling in Dilantin "for the brainfog" and I should start taking it every night. Now 1 I have never ever heard of this drug being applied to LD as it is used to treat seizures. 2 I looked it up online and saw it interacts with Doxycycline which he is putting me back on. Help!!! Is my doctor legit? I had the impression he was the best in my state...
I'm not a doctor, but I feel your pain.
I got lyme most likely in 1987, and was ignored for 20 years due to the fact that I have other genetic health issues that branded me as a complainer from childhood.
My knees did not improve after LT antibiotics, but I do have another connective tissue disease. I have ehlers-danlos syndrome, which also was not diagnosed, actually, until after I finally got my lyme diagnosis. It is a relatively common genetic disorder (as genetic disorders go) however, because it is an orphan disease, many people (in my family's case...many generations) go undiagnosed and are branded hysterics, malingerers, or drug seekers. Doctors do not consider EDS a diff. diagnosis for chronic pain with GI disorders, even though studies indicate that they should.
I cannot have most IV antibiotics for a variety of reasons so I have only had orals, with varying results.
I also have rare side effects from most of the antibiotics I have tried, and my underlying condition predisposes me to being sensitive and/or resistent to many medications.
I tend to agree with the doc here that part of our problem has to do with an autoimmune reaction to the lyme, especially those of us who were third stage for a long time before getting treatment. Not that I do not believe in chronic infection, I do.
Renee, being another doctor's nightmare myself, I understand your frustration.
I cannot say my own neuropathy increased due to treatment. It had increased since treatment and ceasing treatment, but as both Lyme and EDS cause neuropathy, I'd have it likely anyway...and my neuropathy is rather atypical in presentation.
I am sorry you lost and adrenal gland. That's got to suck.
Luke, when in question..ask. Let them know that you know about the problems such as interactions and you want an explanation. Their response will tell you whether or not your doctor is legit. Doctors are people, they should check and double check, but sometimes they make mistakes. Run it past your pharmacist and call the doctor's office. If they brush you off or do not give you the explanation you are looking for, time for a new doc. Communication with your doc works both ways...they cannot fix a mistake or know you have concerns if you don't openly talk to them. One thing I have learned from years and years of dealing with doctors is that if you don't communicate you don't get anything accomplished. Just a thought, its not criticism, we all learn as we go.
It is easy to be an IDSA Lyme doctor. You simply follow the cookbook. If the patient is not better: Oh well.
With "LLMDS" it is the opposite. There are as many opinions and approaches as there are so called LLMDS.
I personally do not like the term LLMD. Gary Wormser who penned the 2006 IDSA Lyme guidelines is certainly "literate," I just think he is wrong.
Doctors who choose to treat chronic Lyme disease are all operating outside the box. It is a work in progress. We try different things. Some doctors may have had success with many therapies I am not familiar with.
I do not hold myself out to be the Lyme expert or even a Lyme expert. I could argue, given the state of the art, there are no Lyme experts.
Every case is different, and differing approaches are frequently required. Some patients are extremely challenging.
Here, I do not give advice to patients or proffer opinions regarding treatments given by other physicians(unless I believe the treatment is dangerous).
This BLOG is written to share my experiences and thoughts with my readers. I contradict myself at times. My thinking and approach continues to evolve.
Doc, was just thinking aloud like you. I enjoy your perspective on this disease, do not think there is any one answer, think there must be some genetic component to make some of us sicker, really think most of the population gets infected but not all get sick.
Enjoy seeing someone in the medical community actually think for a change. I have found that sorely lacking in my years working in healhcare, especially since the HMOs took over.
I gene has been identified that is protective against invasive Lyme.
I will look up the reference.
Wow, would like to see that study
Hi, lurker here, delurking...have lyme, on abx...
Fwiw, with peripheral neuropathy consider a candida autoimmune reaction.
I got real busy with life and while on abx, fell off my usual anti-candida regimen.
Developed a severe peripheral neuropathy such that I could barely walk. Thought it was the lyme. Thought I had to go on disability, etc...
Then, had a lightbulb realization that it was candida. Hit my anti-candida program HARD: diflucan, nystatin, probiotics, GSE, sacch. Boul. and diet.
I reversed the PN! Seems the immune system can develop an autoimmune reaction to candida manifesting as PN.
Interesting article on Lyme related arthritis, "Localized Production of IL-10 Suppresses Early Inflammatory Cell Infiltration and Subsequent Development of IFN-γ–Mediated Lyme Arthritis."
Interesting when considering why certain patients develop joint pain and others do not.
Hope all is well with you, Doc. Take care.
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