After two years of oral antibiotic therapy this 55 year old female with chronic Lyme disease is doing great- or is she? Her stamina is now great. The annoying numbness and tingling is a thing of the past. She is free from joint pains- after many long years. The sweats the chills, the low grade fevers are all gone. The brain "fog" is gone. She is functioning well as a teacher, well, sort of. She used to be a lot sharper. She used to be organized. Now she is scattered brained. She looses things and she looses her train of thought. The word retrieval issue still drives her mad. When she finally pulls up the word she was searching for it is hours later. She is not herself. The cognitive symptoms were clearly worse at the start. Things steadily improved but they have reached a plateau and not budged for over 6 months. The Lyme diagnosis seems pretty clear, she has been seropositive several times at IgeneX and at Labcorp. She has been empirically treated for Babesia and other co-infections. To look at her- one might envision a picture of restored health and vitality.
Ia she the best she can be? Is there a next step? If so, what is the next step?
Many LLMDS would be happpy with her progress, rightly so, and tell her to give it time. Perhaps in another year or two things will get back to normal. Or perhaps she would be told- as long as things stay the same and don't get any worse then it is best to leave things alone.
Per the title of the post, I find myself thinking about (her) thinking. Objective measurements may be hard to come by. I ordered a SPECT scan and an MRI. For the sake of this excercize, we will assume that they will both be normal. She would easily pass any pen and paper neurocognitive assessment. What is at stake is her subjective sense of her global cognitive functioning- pre-Lyme, her memory of her memory as it were.
This is a very gray area within another very gray area.
I think that a course of Rocephin should be tried. I have seen it work.
11 comments:
CNS penetration of our standard orals is pretty good initially with meningeal inflammation, but declines to almost zilch after that. Perhaps this is the reason for initial good improvement with orals for many and then cognitive/ cerebral signs stalemate. Rocephin is a good choice for this. Neurosyphilis protocol for amoxicillin might help if MIC for her particular strain of Borrelia to amoxi is low, but even this is hard to acheive with amoxicillin if no menigeal inflammation. A Flouroquinalone with a low mic for Borrelia might have a chance of reaching cns levels (the limited mic data we have shows no chance with Levaquin and probably Cipro unless very high dosed). Noone uses this that I know of. High dosed Minocycline in a single daily pulsed dose has a chance of sufficient cns penetration if her strain of Borrelia is susceptible enough- many are not. And side effects can be considerable at that dose of Mino for some. Rocephin is the known entity and makes a lot of sense. It is the standard of care treatment for Borreliosis with neuro involvement for a good reason. It works- low mic and high cns penetration = effective killing. This is what I found in my recent research into acheivable cns levels for antibiotics and mic's for Borrelia to help me understand why Rocephin was working so much better than the orals.
One more comment- I think in the advent of all the tests we have, modern medicine has become very focused on "objective" results. If it doesn't show up on a standardized test or have a very obvious clinical sign or phsical exam, the clinical signs are treated as nonexistant or some psycological issue. The fact remains, our tests are not that sensitive in many cases and miss a lot of disease. I don't think you can be a very good doctor and not take into account the patients assessment of their clinical condition. I would give anything some times if my patients could talk and tell me if something feels better with what I am treating for. I don't have a lot of tests available in most cases often due to the cost of testing issue. I have to treat the patient- the owners assessment of if they are back to normal and what I can find on physical exam. This is not a perfect science. However, in my field, if you ignore all disease that does not have an objective test, you miss 40 to 50% of treatable/controllable conditions. That is a lot of pets suffering because what- we are not willing to be the doctors we were trained to be? We were not trained to treat only on tests- somehow in the world of lawyers and malpractice and fancier tests, medicine is morphing into this. Human mammals cannot be that different from domestic mammals.
I had a psych test before the lyme was diagnosed but over ten years since the tick bite. When it came to repeating back five digits...i was poor...for what I know I could do. However, it was said I was just nervous and let go. My drawing skills have suffered, but it seems my right brain works on a different dynamic...so, I can still create. I write stories in my mind, but when it take the skill to type it and remember what I typed. Very slow going.
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Not on point but I thought LymeMD and DogDoc would find this interesting if they haven't already seen. Obviously in animlas but interesting nonetheless
http://www.medicalnewstoday.com/articles/137174.php
1. Doctor, I would love to do a q&A interview with you on my new blog sometime. Mostly because you are versed on differential diagnosis. Love your stuff.
2. With so many studies showing treatment refraction, relapse, etc..how DOES the LLMD know when to stop? You personally blog about those treatment failures or plateau patientes you have. While I am not your patient, I am one of those who is rather treatment resistent. Possibly because I had Lyme too long for a full recovery...and because Lyme is not my only problem.
3. Besides Steere's Hypothetical halotypes, have you seen any genetic predisposition clinicaly, in your practice? I ask because, while I am still waiting for confirmation, it seems I have Ehlers-Danlos syndrome, which is a genetic connective tissu disease. In all the years before my lyme diagnosis, never was this differential brought to me attention when I was misdiagnosed with many other connecctive tissue diseases. So, it turns out, I know of at least two others born with EDS who got lyme in the NY/NJ area (definately) who are also quite treatment refractory. There are ZERO studies on this. Your thoughts would be appreciated.
LymeMd,
One of the things you always mention when you describe your patients is cognitive issues. At one point (the first time he tried Rifampin) hubby's brain seemed to wake up. But in general his cognitive issues have never been that severe despite significant CNS involvement.
I have always contributed this to his nutritional supplementation. High dose CoQ10 -- 300 or 400 mg daily (ubiquinol form) -- significantly reduced his blood levels of lipid peroxides -- this was a couple of years before his diagnosis or any treatment. He still had significant neuro symptoms, but I do feel the CoQ10 mitigated actual brain damage. He has been on this supplement for over 7 years now. One of the few we will probably stay on forever.
Also supplementing with good fats is very important. Hubby had lots of testing showing that he was deficient in almost all classes of fats. Digestive enzymes (with lipase) and ox bile help him absorb fats better.
Many Lyme symptom lists include getting lost as a symptom. I found a reference once that said this is a symptom of a deficiency of choline. It is my understanding that borrelia depletes choline and I think babesia uses it as well.
Phosphatidylcholine is another very important supplement in my opinion. This supplement will help with liver function (IV supplementation at low doses lowered hubby's GGT to normal) and also help protect the nerves from damage. Most alzheimers meds work on acetylcholine. This is a very very important neurotransmitter for memory.
Oral lecithin is cheaper but probably not as effective as the more concentrated liquid phosphatidylcholine (1 or 2 tablespoons daily). And of course the best natural source is egg yolks which many people avoid.
These supplements are not cheap but they can help greatly. Of course very few docs order tests of CoQ10 levels or lipid peroxides or fatty acids or amino acids or neurotransmitter metabolites to prove whether these nutrients are deficient or whether the supplements are effective.
The benefits of these supplements are not necessarily dramatic so without testing it may be difficult to "prove" their benefit. And at low does there may be no obvious benefit. My advice would be to try high doses of these supplements for at least 3 months as a fair trial.
But as with any supplement start low and work up to a higher dose. Hubby's neurologist who originally put him on the CoQ10 cautioned him that high doses would initially cause headaches as the supplement started working to reduce free radicals. This did happen.
A body can't heal without the proper nutrition and unfortunately diet alone is often not enough.
Yes. I was once sharp as a tack. Now I'm as dull as a number two pencil after answering the last question on the SOL.
I wish someone could help me. No one wants to PICC line without orals first. Maybe it should be reversed.
I'm dizzy today and missed an important appointment due to my new found Lyme flakiness. It took me a while to retrieve flaky.
There is clearly something wrong with me. But there is clearly no cure. Just lucky to know I have Lyme I guess! LOL.
While I appreciate the unheralded and dedicated work of LLMD's like yourself, statements such as this are depresssing...
>>>Complementary medicines which appear helpful include: Bile binders- Welchol and Questran. I remain unconvinced about any others. I am cautious about recommending things which have no proven clinical benefits.<<<
Proven clinical benefits? The ruling medical paradigm is a stranglehold of special interests that has killed or destroyed the lives of countless undiagnosed Lyme patients. Whose proof do you require- clincial studies? There are substantial risks to the patient with long term antibiotic use, let alone the rising tide of of antibiotic resistant bacteria like MRSA. Don't the anecdotal reports of many, many patients who have successfully utilized complementary medicine to regain their health after an appropriate course of antibiotics have any merit at all?
Five years ago, I WAS the patient with lingering syptoms that you've described on this blogpost and I wanted out of taking antibiotics after 8 months of different combos. Late stage, undiagnosed lyme encephalitis had nearly killed me; a brillint pair of LLMD's and antibiotics gave me my life back and I did the rest using well-studied herbs that have been safely used for millenia,also added kefir and a few choice supplements.
Unfortunately, I had another encounter with a nasty infected tick - and I am hoping to utilize all the weapons in my arsenal- beginning treatment again with my LLMD.
I buy my herbs from a trusted source and give not one thought to a requirement for standardization for substances that many cultures freely and wisely use as food with no ill effects. (nettle, rasberry leaf, burdock, elderberry, dulse, to name just a few).
There's no money to be made on lots of these things, no patents to be had- so they are not fairly or adequately studied- but it doesn't mean there's no "proof" that they work- especially on lingering symptoms.
Doctors are loosing their medical licenses for prescribing dangerous antibiotics. When readers re-inforce the notion that antibiotics are dangerous and cause superbugs to proliferate it only feeds into the IDSA point of view. Of course they argue that so called LLMDS are quacks, out to fleece patients, who treat for a disease that does not exist. If herbalists help you great- I admit ignorance about this area- although I am quite skeptical myself. I have to keep abreast of immunology, cardiology, dermatology, neurology, rheumatology, hematology, dermatology, gynecology, orthopedics, pulmonology, pharmacology and other medical disciplines- all this while fighting to keep my medical license. If you Uber-doctors can do this and also be expert at herbal medicine- they are much smarter than me. I do my best.
I cannot afford to miss a brain tumor, paraneoplastic syndromes, vasculitis, odd autoimmune disorders, cardic disease, Wegner's granulomatosis, mutlple myeloma, prophyria, amyloidosis, pulmonary hypertension and hundreds, if not thousands of other medical disorders. I am just a simply country doctor, a family practitioner. As soon as specialist hear the work Lyme the patient is dismissed. That is why I have to do their work and not miss another esoteric diagnosis. I am held to a much higher standard because of what I do.
Hi,
I have been reading your blog for a few months and very much appreciate the thoughtful care you afford all of your patients. I am sharing a link (below) in that spirit and as you have expressed that you are interested in introducing the use of Fluoroquinolones more aggressively into your treatment regimens. Toxicity reactions to the fluoroquinolone antibiotics are very real, but unfortunately very poorly understood. The are clearly made worse by concommitant use of NSAIDs. Patients dealing with the devestating results of the toxicity experience a similar of misunderstanding from health care providers to those dealing with Lyme. While the potential adverse reactions are backed with mountains of data and journal articles it seems that many are unaware or skeptical about the idea that fluoroquiniolone antibiotics could have a long term toxicity effect. You may well be aware of all of this, but I thought I would pass this along. I am sure the physician who wrote it would be happy to speak with you if you wanted to be in touch with him.
Thanks for all that you do for patients!
http://www.fluoroquinolones.org/Dear%20Doctor.htm
I do not believe I suggested that quinolones should be used aggressively. They are not in the top 10 antibiotics I prescribe.
They do have their place.
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