We are no closer to any acceptance by the medical community of the existence of chronic Lyme disease. Patients and their physicians alike are dismissed.
Lyme is difficult to treat. IV antibiotics are frequently required. In my experience, the disease is frequently under-treated. Excessive concerns about severe Herxheimer reactions are frequently associated with inadequate therapy.
The goal of therapy is clinical remission. The persistence of the organism in cells makes it virtually impossible to eradicate. Despite this, some patients may experience a sustained remission off antibiotics. Other patients may have a remission maintained with low doses of antibiotics.
We still know very little about the disease. I would be concerned about claims that a physician is a "Lyme expert." No such experts exist at this time. The term LLMD has no specific meaning.
Patients frequently harbor a parasite that may or may not be a species of Babesia. The existence of this parasite may be impossible to prove based on current diagnostic standards. Treatment of this entity is critical for recovery of many- not all patients.
Ehrlichia is a fairly common co-infection. It resides in white blood cells. It too can be somewhat difficult to treat, but it usually responds to antibiotics well.
Bartonella appears to be a rare coinfection based on objective measurements. The optimal treatment for this bacteria is a matter of debate.
Bartonella like organism- "BLO" does not exist.(My opinion)
There are major, yet unidentified, co-infections- at least one of which is very difficult to treat. This is the small, highly motile, gram negative bacteria seen in the blood of most Lyme patients. This bacteria is highly resistant to most antibiotics. At this time it is not clear how to treat it. An unidentified small protozoan has also been seen in the blood of Lyme patients. This too is unidentified, but may account for some the clinical responses seen with Flagyl and anti-malaria drugs.
Rickettsia species may be frequently transmitted as a co-infection, but are probably eliminated with anti-Lyme therapy. Atypical Rickettsia have been identified in 20% of Ixodes ticks.
Mycoplasma species and Chlamydia pneumonia are frequently present in Lyme patients. They are intracellular and are also difficult to eliminate. Their role in the pathogenesis of the syndrome is not well known.
Standard allopathic treatments are very effective. I believe the role of CAM in managing this disease has been over emphasized in most quarters.
Therapy must be individualized. It remains difficult to predict how individual patients will respond to any given regimen.
Chronic Lyme disease is associated with objective measurements and findings.
The role of vitamin D remains unanswered. For now, I see it as a marker which relates to an immunological response to infection.
CD57 counts appear to be of little clinical benefit.
Many, if not most of the symptoms associated with chronic Lyme disease, reflect the bodies immunological reactions to infection, rather than infection per say. Auto-immune responses play a large role in the pathogenesis of the disease syndrome.
Proven antibiotics (classes) include: beta-lactams. macrolides, quinolones, rifampin, Flagyl/Tindamax, anti-malarials- Plaquenil, Malarone, Mepron, clindamycin- related to macrolides, tetracycalines and artemesin. I see no significant role for sulfa drugs like Bactrim.
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.
Information about Lyme and tick borne illness remains very confusing and contradictory. Lyme patients need to become well informed about their illness so that they can partner with their physician. Patients must also be informed so that can decide whether or not a physician's approach makes sense to them.
Patients and doctors should not be wed to a particular paradigm. If a therapy isn't working then something else should be tried.
I do not believe it is ethical for physicians to sell supplements and books to patients from there office. It may be legal, but I see it as a conflict of interest.
The vast majority, yes 90% or more of patients, experience significant improvement when the correct therapy has been established. There remains a small minority of patients who are resistant to treatment. Even these patients generally improve to a variable extent, if the physician is both creative and persistent.
Multi-specialty Lyme clinics must be developed in the coming years.
35 comments:
"Multi-specialty Lyme clinics must be developed in the coming years."
I would like to know what specialties you feel would be most appropriate given current knowledge regarding treatment options for chronic Lyme patients, as I am researching the possibility of opening such a clinic.
Do you think a single tickbite, a single tick, these days, is that "dirty" ie carrying the multitude of bugs known and unknown you discuss? A mosquito may transmit dengue in some areas, malaria in others, but it doesn't usually transmit both and a bunch of other bugs at the same time. Are all these virulent bugs that well adapted to both the tickgut and to mammals--? If so, is that unique--to adapt universally that well to a tickgut and live happily there for as long as several years (if a tick can survive that long btw blood meals which it can) and then go to town in a human or other mammal? Or are the sickest lymies those who live in endemic areas and got unknown multiple bites?
In terms of all the lymies having the mystery bug (per Clongen) maybe the lymies that recover after a few weeks of abx and go on without any further problems either dealt with all those bugs well or got a cleaner tick. Maybe these are opportunistic There is so much unanswered at this point. If Clongen could test even twenty or thirty "new" lymies (those with a new bullseye and no previous history of chronic problems), it might be revealing.
Personally, the people I know who had an easy time with lyme simply cgot it, and got over it quickly with a few weeks of abx (and they are not having malingering symptoms that they don't report and don't realize are chronic lyme).How much does individual immunity play a role? A typical family I know, that has a summer house on the north fork of Long Island: parents in their sixties, adult children in their 30's. The wife is healthy as an ox. The husband has digestive woes and other problems that at one point I convinced him may indeed by lyme-related. The daughter has interstitial cystitis. The son has various health issues. All could have "chronic lyme" but they lead active lives, and are not disabled. However the golden retrievers died gruesome and horrible deaths from lyme/babesia. (The family is now on their third golden retriever and test her every few weeks for lyme in the summer). Treatment didn't help the dogs. The Dad, being a curious physicist, ran an experiment: he put out seltzer bottles at the edge of his property near the woods and within an hour the bottles had multiple ticks swimming in them (attracted by the carbon dioxide). Clearly the property is infested. Clearly the wife is fine, the other three have multiple minor problems relatively speaking, and the dogs given their genetics succumbed in painful and tragic deaths.
What is "CAM?"
BT
CAM= Complimentary and Alternative Medicine
CAM is for another blog and so is jenbooks13 as you insult LymeMD and his patients who do have chronic lyme and have serious, sometimes debilitating problems. Hopefully in 2009 you will finally go away. I agree that little is still known about this disease and little attention is paid to it by the medical establishment. I fear it will end up in the medical wastebasket with many others but I thank LymeMD and Clogens for all their long efforts in trying to understand Lyme disease and the other infections that may come with it. I know suffers of 20+ years who are still trying hard to recover and I do not want them to be insulted any longer. I also don't want to hear insults about how LymeMD practices or thinks by someone who is clearly has no clue as to what chronic lyme is. Again, LymeMD thanks for the efforts. I've seen the patients and what their symptoms are and how disabled they are and I know they appreciate the fact that you believe in them.
Bitten, I said nothing about CAM in my post. The doctor posted at some point recently that he himself had not been offended by any comments nor by curious patients' questions. That clearly includes me.
I believe you are mistaken jenbooks13 as you clearly do not believe in chronic lyme disease and that is the whole of his patients. You state so in your post here. You insult me, his patients, him and the lab that is working so hard to identify bacteria found in patients blood but forget you. You are not important and you obviously have not seen the children so affected by this disease that they attend school in wheelchairs, entire families disabled. YOU are the support for THE MEDICAL ESTABLISHMENT that denies chronic lyme. You do not see us as they do not see us. We are not here to you so why are you on this blog? You are of no importantance to us.
LymeMD you have had so many personal successes in 2009 helping patients that had only been denied by the other doctors, mis-diagnosed for years and mistreated by medicine. You can be proud that you have belief in your patients and they have belief in you. This is rare. A breakthrough will come. There is a Center of sorts in New York and chronic lyme patients have become so numerous that they cannot be ignored for much longer. We can all forget the Jenbooks13 and the establishment she supports and concentrate on success stories and perserverence that patients and doctor have.
It will be a good year for chronic lyme disease.
BLO does not exist and bartonella is a rare co-infection.
What is BLO then? Is this the mystery Clongen bug?
Why is bartonella considered a rare co-infection? I thought I had read that more ticks carry b. henselae and quintana than Lyme?
Here's to health and healing for Lyme patients in 2009!
I just listened in on a phone conference call w/ Pam Weintraub, who was asked "What/Who stood out to you the most while writing your book?"
Her answer was Dr. Barthold in CA, who worked at Yale for 25 years. He told her that at Yale, they have always known Lyme was chronic...from the beginning!
Great! So they've let us all suffer!
LymeMD, have you seen this?:
http://www.ildfinc.com/
Do you think it is a reality? I sure hope so.
doc
"an unidentified protozoan"
In the red, white blood-cells?
It seems like a few of LymeMD's patients are using me as a straw man for the establishment they're angry at.
I believe in chronic lyme, I have chronic lyme, and I suffer with it. I've already posted about that.I already encountered the car-wreck of an infected tick in the summer of 2000.
I send people to Dr. Liegner if they want a recommendation for a good doctor.
My questions are very legitimate. Some people can live on endemic properties and never get ill; others are destroyed by it, whether humans or the dogs I mentioned. Why is that?
Are the ticks themselves this "dirty" as vectors or does it require multiple bites?
A double blind needs to be done by Clongen before we can say that this gram negative resistant bug is significant in chronic lyme. We need to find out if those who get over lyme easily have all these infections; or if these extra infections are the key; and how many healthy people harbor them or can fight them off.
We need to find out if genetics/innate immunity is more important, or if strain/multiple bugs is more important, or if it's a strange mixture of both.
We need to find out if bb is the sentinel bug that both suppresses and "inflames" the immune system and thus allows all these other bugs to piggyback when otherwise they would be harmless.
We need to find out what abx treatments are working best in different parts of the country, therefore differentiating strain susceptibility simply through collating information, which I believe is something Burrascano is trying to do. We need to be able to say, Where were you likely infected? Ah, the infections in that area seem to be most commonly susceptible to...(this combination of a, b, c antibiotics). Rather than the ad hoc trial and error each doctor is attempting on their own at scattered places around the country.
We need better treatments because a lot of us are left out in the cold with either autoimmune problems that preclude the kind of aggressive treatment LymeMD uses, or detoxification/sensitivity issues that preclude it, or serious fungal issues along with such debilitating, severe reactions to fungus/mold that preclude it and don't seem treatable with the current azoles available (the latter being me). We need above all to be polite to each other and stop attacking those who, if unable to tolerate aggressive antibiotics, look for other means to improve their situation.
We need better treatments than antibiotics. A case in point, HIV drugs evolved from very harsh drugs that sometimes helped and sometimes killed in the early days of the epidemic, to protease inhibitors that in spite of side effects are relatively well tolerated and allow many patients to live with their infection.
My post was meant to indicate that 3 of those 4 family members who summer on a very infected property may have lyme, but it isn't disabling any of them. Yet the dogs (like some humans) were devastated by it. And the mom is completely healthy. This presents a very confusing picture, especially if there are six to eight serious infections that chronic lymies carry (according to this January overview post).
If I knew someone in the Maryland area who had chronic lyme and wanted antibiotic treatment I would recommend your doctor, so please stop being so defensive.
You say that treatment of babesia is important for many patients.
Do you have patients that fail with Mepron and/or Malarone?
I did a "search" of your blog posts using the terms 'quinine' and then later 'Riamet' and nothing really came up.
I find it surprising that atovaquone suffices in a practice that seems to have so many patients.
The one thing that came up when I searched 'quinine' was something from May where you said you don't use quinine because it can be toxic.
My sympathetic primary care doctor told me that some elderly patients who were studied while using Plaquenil had developed apparently non-reversible cariomyopathy associated with the drug. Are you aware of this? It discouraged me from trying the recommended therapy of Biaxin plus Plaquenil.
Happy New Years Everyone
Doc- must be an unusual day. I agree with everything you say. I want to thank you for all you do for us and for the blog too.
Bitten- from the day before, I beleive Doc already participates in Dr B's database
Starlings preschool- BLO would be in those patients negative for the known bartonellas. In this context, I think doc is referring to those patients empiracally treated with Levaquin and Rifampin that are negative in testing but presumed to have Bartonella based on signs. I agree with doc in these situations that a Bartonella like organism that is not findable on current testing is not the only explanation- Rifampin and Levaquin are both antibiotics that get into brain better than many others. Levaquin at least that we know kills Lyme. The response to these drugs does not mean a patient has some unidentifiable Bartonella organism- it could be these drugs are just getting the Lyme in places the previous ones did not.
Jenbooks- Sorry you couldn't tolerate the antibiotics. They have done wonders for me. I am lucky to be a good responder and except for a couple, have been able to tolerate everything beautifully. We need all the answers to your questions. We just don't have them yet. Not really a way to run a double blind on lab tests- need a treatment and placebo for that study design. Dr K ran controls from non patients and all negative.
Gale- not confirmed parasitic, just suspected. Extracellular and free tumbling. Seperate from the bacteria. Working on additional confirmation now.
2008 was a hard one but I made it through. Lyme can be very depressing and I fear there is no sand left in the hourglass. It seems my time is up. What do you do when there is no more energy or motivation? No answerss and no treatment left. I have always been a fighter but this one has got me.Everyone have a good 2009.
I recently discovered this blog and I wanted to say "thanks" to LymeMD for putting it together. I look forward to following your brave effort in helping us all kick this frustrating disease.
I have my own blog. Check it out if you're interested http://chronictriathlete.typepad.com
Best.
/CT
Dogdoc thanks for your kind comments and I always appreciate your posts.
Yeah, I don't want to belabor my own situation but I had a bullseye appear within 2 weeks of being bitten (in retrospect--since I was hanging out in a Connecticut garden a few miles from Old Lyme two weeks prior), I had access to treatment as my "CAM" doc had gotten lyme twice himself at his Montauk house, once done IV rocephin, and once done doxy for 4 months...of his own choice...monitored himself etc...I saw the bullseye on a Sunday and called him at home on a Sunday and had my doxy in my hand a few hours later...
To me, CAM just means the best of integrative and "alternative" medicine. Already LymeMD uses it (Vitamin D, CoQ10, saw palmetto etc). It's just your own individual choice what you consider worthy from the CAM world.
I had options for IV that summer if I could have tolerated...and sadly I respond *really* well in terms of lyme symptoms to high dose amoxy with no "herxheimers" but given my other genetic, autoimmune and fungal issues, I'm stuck for the time being...thus I'm not one who was misdiagnosed...or had no access to care...I have had the finest care that my body could tolerate...I'm waiting on an oral echinocandin (new class of antifungals) if it will ever get made...and not cost a fortune...then we'll see.
I will say that this blog is increasingly popular. There is a thread on lymenet now where one person, Terry, makes a very good case for CAM having allowed her to do the abx...there *are* a significant # of patients who need supportive measures...ER visits, heart herxheimers with pulmonary embolisms, prostate herxheimers, whatever LymeMD describes, are tough and scary...there may be ways to ameliorate or avoid them, beyond questran or welchol.
I'm glad you respond well. I know a few people like that who can take almost all the drugs and steadily get better and not even have much issue with herxheimers.
I'm willing to believe the Clongen data it just boggles my mind. I want to know if this mystery bug is a recent commensal in ticks. I really want more tick studies themselves, in various parts of the country. Eva Sapi's is the only good one I know of to date and it was only a few hundred Connecticut ticks.
Meanwhile, I have enlisted the help of a scientist overseas who works with some top labs, to see if he can disable the heat shock proteins in BB...not with drugs...we'll see. I just keep on plugging away myself in my way.
jenbooks13: yes, there are so many variables and so little effort going towards understanding this that we patients who have been devistated are just surviving. I work with some who have been treated when they had the rash but it still took one year to recover while others have rash but no symptoms and then there is me the one with "persistant" Lyme. I cannot get the treatment needed and that is another story so LymeMd must work with what I can get. I was also initially undertreated by an IDSA doc so there are variables and reasons. good luck
My sister has chronic lyme diagnosed by a reputable doctor. She has been symptom free from a few years. Recently she has been sick with a variety of symptoms, i.e., fatigue, chills, headache, etc. but now she had stomach cramps, a lump in her throat and is lathargic. No desire to eat and is losing weight. A once vigrant 62 year old now says she is even too sick to drive. Her nausea has disapated with meds that were given to her during a week long stay where she had several GI tests that were negative. Her Lyme Dr does not think it is a flare up but she is failing so much and weak now that I don't know where else to turn with her. Any suggestions? Does this sound like it could be more Lyme? She is scheduled to see another GI dr this week but she needs it is discouraging and I want so much to help. Any ideas? Thank you
Bitten- Thank you. That was nice of you.
Jenbooks- I herx significantly with each round- but they are short and whatever gets worse promptly gets much better. I don't get scared anymore- I know it is part of the way this stuff works in my body. I also know I am lucky. I don't lable a lot of things as "CAM"- only the really way out there stuff. There really should be just medicine. My concern with a lot of it- conventional or CAM, is that people get fixed and not taken for all they are worth. There are people in the world who are not all good in all realms. I think Docs issue is similar to mine- people being taken advantage of in a desperate state. Mine goes for all medicine however, not one type or another. Its a complex picture at the moment with few known rights- so much is up for interpretation. Perhaps that will change with some better research and coordination.
What is it that you don't tolerate with the high dose amoxi that you respond to if you don't mind me asking?
nosandleft- What can we do to help?
it seems NIH did know about chronic lyme disease. check the news release at http://ww3.nlaid.nih.gov/news/newsrelease/2001/chroniclyme2.htm they did not believe that long term antibiotics were needed but more recent news releases at this site do talk about a new parasite and many other interesting things
Thanks dogdoc. I can admit when I'm wrong and I think I have been wrong about Jenbooks13 at times. We are all in this mess, and a mess it is. We have to stick together. I have both my eyes infected now. This is the 2nd time. Its not pink eye the infection comes from the back and is very painful and causes very severe headaches. LymeMD thinks I need IV antibiotics and I believe so too (there are other reasons) but I cannot get them approved unless my lawyer has a court hearing. I've had lyme arthritis with the fluid testing positive and IV antibiotics are the recommendation from NIH, John Hopkins and others but they still deny so I suffer. Anyway. I don't know what I will do as what I have seems to be resistant to just everything.
Dodi: I was like that for a long time. Never hungry. Could not swallow. Just forgot to eat and would rather sleep than eat anyway. At the end of the day I would think back and realize I had not eaten all day but I did not care. Too tired. I lost 20 lbs. I would push for a lyme check.
Bitten, I thank you for coming round. I'm pretty sure you would already know it, but IV rocephin is generic and you can work out cheaper ways to get IV supplies--check out lymenet.com and the "sticky" thread at the top of Medical Questions, Generic Rocephin available. Some folks on there found the cheapest generic rocephin *and* ways to work with their pharmacies to get cheaper IV supplies. Maybe this is a possibility. Maybe you already know this.
Dogdoc...my genetics and history is not too promising and would take too long to explain here and hog public space. Suffice it to say that I'm an outlier in terms of traditional treatment possibilities and there's not a lot I can do about it that I haven't done. I've had the most knowledgeable input and advice out there...done my best...probably beat the odds so far but lyme has taken a terrible toll on my life...I used to travel the world, exercise vigorously...all that is long gone and may never return.
The worst part of lyme is something hard to explain to the outside world--as a CNS infection and in whatever way it affects the mitochondria, it invades the soul. It produces a toxic lethargy--takes away joy--creates a daily suffering. For some, it takes away their ability to think clearly. That is the worst part of it, not an ache or a pain, a swollen knee or even an irregular heart rhythm. In that way it is really...tough.
I don't believe lyme will ultimately be conquered with a sledgehammer...it already has defenses against that, it takes a nasty revenge on those who smash it headfirst...maybe just a gentle trick, to divert it...who knows.
Yes, I'll hang in there with LymeMD. You would be defensive too if you knew him then felt that he and patients are insulted but maybe that is not the case. Don't think he will give up on me.
BTW I'm sure I had multiple bites. No doubt.
Unfortunately, I am allergic to roceptin. figures. I've never been allergic to any drug but tried this one IV and am allergic to it. Broke out in hives from head to toe.
I can get all the supplies I need; tubing, saline, heparin and other. Lots of friends have leftovers but I'd have to use another drug. I've always felt that there was something missing. There is something else I have and I know it. I do believe, given time, it will be found.
I feel like my life has been robbed from me because it has. I was a dancer, skier and overall fun person with a PhD. I'm too serious now and have trouble with simple things at work. Feel like an idiot and am sometimes. People would rather not talk to me and that is opposite of how it used to be. I don't smile much and it used to be so natural to me. I go through periods where I feel like my old self and I feel good but something happens; a fever, headaches, abdominal pain or all of them together and it takes a while. Someday though.
The eye doctor said my optic nerves were inflamed so the bacteria must be in the optic nerve. That's nice. I guess my eyes are going to catch on fire. Now that would be a funny sight. I'll leave everyone with that thought; my eyes bursting into flames while I drive on the highway going home.
The patients are amazing and these are amazing stories so lets hear another.
I totally understand.
You just have to hold on to that memory of yourself and know it's still there and the one thing you have to fight for is your "soul", that formerly fun you. It's sort of a cosmic battle of good and evil. Don't let that go, even if it's just your determination to regain it.
Jenbooks- its ok- was just curious. Hazard with me and all things Lyme.
Bitten and Jenbooks- I feel for you both, not because I know for myself, but because you both sound very much like my husband and how he feels. I have watched him suffer for so long- all of it, the optic nerve/ brain, heart rhythm, joints, pain, ect ect and most of all just having your life sucked away from you. It is very hard to fight from that place, when you don't even remember what it felt like to be ok. I hope something is found for all in 2009. That it is the year of hope for everyone.
Thanks dogdoc. The best bedside book for lymies is Adrift: 76 Days Lost At Sea by Stephen Callahan. It's probably time for me to reread it. It's a masterpiece and an inspiration.
Thanks for another great post.
Just curious why you feel CD57 is of little use?
For me, this was the one red flag that convinced my MD to more seriously consider lyme (fortunately).
Given it is readily available and relatively cheap, why would it not be a good diagnostic tool or marker for treatment progress?
Have you had symptomatic chronic lyme patients that do NOT have low CD57s? Similarly, have you seen CD57s rebounds without symptomatic improvement?
I'm also wondering why the CD-57 is of little value in dx-ing. I'd always thought it was one of the key things to look for. It'd be great if you could explain in a future post! Thanks for the blog!
I am so fortunate to have a beautiful daughter (inside and outside) who has brought me nothing but joy all her life and I have so many wonderful memories of us. We have been alone since I was 7 months pregnant. Anyway, she's an optomist and even though she will go away to college in a couple of weeks I have no memories except fun, intimate, and joyful to remain with me.
dogdoc: with hubby and the optic nerve what was the outcome? I fear going blind or progressive sight problems.
jenbooks13: New years bring new things. Would Let me know. I believe I will have my life back one day. I am sure of it. I go on retreats-silent retreats and it helps a lot.
My great, great thanks goes to LymeMD who spends his days tirelessly helping those who have been thrown aside by the estabishment. There is no way I can repay him. Don't know how he keeps up his pace and does not get fed up enough to quit by all the idiots, lawyers, IDSA hassling and other. We patients must find remember to say "thanks" just a simple "thank you" for not casting me aside like so many others have; for not saying, as one ivory tower doc did say that I must have munchouser syndrome (sp?) needing attention or as one neurologist said "sometimes we have pain and we just don't know where it comes from????"
LymeMD thanks so much for taking the time to listen and believe me and keep on trying. I'll hang in as long as I need to and know you will do the same.
jenbooks- Agree with you about that novel. Were sailors before we sold the boat to help pay for this stuff.
bitten- blessed be our precious ones. Glad yours was not affected by this stuff. Hubbys eyesight has improved considerably with treatment. His issues are actually just behind optic nerves as they go into the brain- his signs are the same as optic neuritis and that is what neuroopthomologist thought it was before fancy tests. Hopefully when you find something that works for the rest, it will clear yours as it did his.
jenbooks13: is there a way we can connect?
Yes, you not only forget how to, but you are impeded to smile. The muscles of the face fall and the inside of the brain seems not to be able to generate the smile; all this tied to the sadness, the pain, the mental fog, well, yes, of course it is hard or difficult to smile. But you know what? just try, make a fake one, it helps a lot!!! The brain will remember how to do it, everything will get better too for sure.
And yes, if you have suffered this pain of not being able to laugh or smile, you probably agree that the happiness of feeling well is soo huge that you smile all the time.
Yesterday, for example, I was so incredibly happy just being able to watch the beautiful full moon without feeling pain. Please never stop trying, nor fighting the bug; God is big!
Hope you all feel good.
clindamycin is not related to the macrolides - clarithromycin is though.
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