Is there a relationship between missing an early diagnosis of neuroborreliosis and later persisting symptoms? There seems to be, based on what Dr. Brian Fallon has stated in the past. This is something that interests me.
In my research on Lyme disease treatment guidelines, I think this recent paper has been mentioned on Lymenet Europe:
http://www.njmonline.nl/getpdf.php?id=10000693
Coumou J, van der Poll T, Speelman P, Hovius JW. Tired of Lyme borreliosis. Lyme borreliosis in the Netherlands. Neth J Med. 2011 Mar;69(3):101-11.
Man, these guys know what I'm thinking... I'm tired of Lyme borreliosis, too. And tired from it, as well as the entire stinking enchilada of controversy around the chronic issue.
But I digress... a lot of this paper echoes the IDSA treatment recommendations for Lyme disease, and later on, mentions this:
"In late manifestations of Lyme borreliosis, the same antibiotics are recommended, but with a longer duration of treatment (table 1).
[Ed. - table 1 mentions 30 days of IV ceftriaxone or oral doxycycline, depending on whether or not the patient exhibits pleiocytosis.]
"For selected individuals with aspecific symptoms in combination with positive Lyme serology antibiotic treatment could be considered. Although, to our knowledge, evidence-based guidelines for this are non-existent, treatment could be adjusted based on the duration of symptoms, e.g. short duration of symptoms (< 3 months) could be treated with 10-14 days of doxycycline 100 mg twice a day and longer lasting symptoms with 30 days of doxycycline 100 mg twice a day. In case of persistence of specific Lyme borreliosis symptoms, persisting B. burgdorferi s.l. infection, or re infection, should be considered and additional or prolonged therapy could be indicated."
Okay, so that's about individuals with positive Lyme serology. Positive Lyme serology and subjective measurements. Got that.
Then they mention PLDS patients:
"In stark contrast, patients with PLDS, or individuals with false-positive Lyme serology and aspecific symptoms, such as fatigue, myalgia, headache and joint pain, should not receive antibiotic treatment. However, some of these patients are occasionally unjustly treated for months to years with (multiple) intravenously administered antibiotics, for which no credible scientific evidence exists. Such approaches pose a great risk for serious adverse effects."
And so they're staying that individuals with false-positive Lyme serology and aspecific symptoms should not receive antibiotic treatment.
Right. So.
After rereading these paragraphs a few times, this leaves me with some questions and/or comments:
- How do you determine which patients have aspecific symptoms with positive Lyme serology versus patients with false-positive Lyme serology and aspecific symptoms?
- If evidence-based guidelines for patients with late manifestations for Lyme disease are non-existent, how are you coming up with this recommendation and what IS it based on? If you say opinion, what is that opinion based on?
- Which specific Lyme borreliosis symptoms must persist in order for prolonged therapy to be indicated?
- You're stating right there that the infection can persist. How do you know it persists?
I have a lot of unanswered questions about this, as I'm sure others might after reading this.
At the close of the paper, the authors wrote this:
"Antibiotics are effective in all manifestations of Lyme borreliosis and prognosis is usually excellent. However, a minority of patients experience potentially severe, but aspecific symptoms after previous adequate treatment for Lyme borreliosis. In these individuals, additional antibiotics have no substantial beneficial effects compared with placebo.
A challenge for the future is to develop a test to detect, or rule out, persistent active B. burgdorferi s.l. infection. This could reassure individuals who experience aspecific symptoms after previous recommended therapy for Lyme borreliosis, prevent unnecessary treatment and pave the way for research on the true aetiologies of aspecific symptoms after recommended antibiotic treatment for Lyme borreliosis."
And I agree, a test is needed to detect and rule out persistent active B. burgdorferi infection. However, what are they doing right now to make that determination?
"In case of persistence of specific Lyme borreliosis symptoms, persisting B. burgdorferi s.l. infection, or re-infection, should be considered and additional or prolonged therapy could be indicated."
I just wonder... are we going in circles?
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Wait - Individuals with false-positive Lyme serology and aspecific symptoms should not receive antibiotic treatment; but they have no test to detect, or rule out, persistent active B. burgdorferi s.l. infection?
ReplyDeleteSo then what does "false positive" mean?
BTW, link to article does not work. Nor does the link to the article from PubMed; both give the same error message.
This link does work:
ReplyDeletehttp://www.calmmindpainfreebody.com/painfreebody/deerticks/assets/LymeTired2011.pdf
Hi shagbark,
ReplyDeleteWelcome to Camp Other blog.
Yes, shagbark, do you see what I mean by asking the questions I asked above?
I'm not sure how they determine what a "false positive" is, either, and I'd like to know how they make that assessment.
In 1994, two bands were removed from the test which were specific to Bb - it would be of particular interest if kDa 31 and 34 (OspA and OspB) were added back into the positive test result. With them, what kind of false positive is there?
Sorry the link did not work - thank you for pointing it out. I was hoping to maintain links to the official document, but if it's not working I'll have to add an additional link that does work.
C O,
ReplyDeletemost "expert" docs may not know more than you or I. But THEY control what the billions of insurance money is used for. They are humans, they can err, they even can be malicious...
Are you aware of the findings that ß-lactam ABs (penicillins, cephalosporines...) can ?drive B.b into the cyst / "spore" form, which is insensitive (so allows the survival of B.b)?
IF true, then ß-lactames (i.e. the "textbook therapy" with ceftriaxone) might cause a problem by creating a LARGE reservoir of spores, which SLOWLY might revert to the active spirochete form over prolonged time.
If so, the "textbook therapy" would sort of guarantee that you become "very chronic" because of the large reservoir of silent B.b "spores".
From the perspectiv of the producer of such ABs (i.e. ceftriaxone) that's perfect: get ceftriaxone once ---- and the need for endless more ceftriaxone is created (similar to an addiction). Of course the insurance companies are not willing to pay for expensive i.v. ABs several times per year, for the rest of your life.
There have been LB patients who have sold their houses for more of such "therapy", even continued on credit... (That's an idea which just came to my mind: they are sort of "addicts"! If you don't take it again you become VERY miserable!
Do you know that heroine was synthesised and patented by BAYER in ?1898? That's a long and fascinating story... Roche made huge profits from Valium, which is an addictive drug also...)
I know of two people who have achieved control over NB with cheap doxy, which in Sweden is the first line AB not only in (early) LD, but in (late) NB. Control over NB for more than a dozen years!
I have been propagating this simple approach for more than a decade - but curiously no one seems to be interested. Why not?
A cheap solution is not credible? It has to be some "new" / patented stuff at (very) high cost????? That's rediculous!!
Just an example from my former teaching days: Decades ago millions of (mostly) children died from diarrhoea. ABs possibly would have helped (but no solution for poor rural countries)...
But then it was recognized that diarrhoea is a "rational" way of clearing the gut of microbes - and that fluid and "energy" and solutes / salt lost have to be replaced to prevent dehydration... death..
So this has become a WHO / EBM therapy: fluid with glucose and some potassium and sodium ?chloride in it can save millions of lives.
That's simple, cheap, rational - and accepted! Why not try simple, cheap, rational doxy for NB instead of "irrational" ceftraxone, cf. / see my initial arguments?
I'm still waiting for a "reply", some sort of answer to my comments...
chen-men
Chen-men,
ReplyDeleteIn response to your comments:
"most "expert" docs may not know more than you or I. But THEY control what the billions of insurance money is used for. They are humans, they can err, they even can be malicious..."
I'm not certain I'm following your reasoning, here. I thought CEOs of insurance companies controlled what the billions of insurance money is used for - along with their shareholders. Correct me if I'm wrong, but one of the reasons the Affordable Care Act aka "Obamacare" was written up was to ensure that 80% of profit went directly back into patient care and not into the pockets of CEOs. They still get 20%, which is a pretty big chunk of money given how much premiums can still cost in the US relative to monthly costs in Europe for the same service.
"Are you aware of the findings that ß-lactam ABs (penicillins, cephalosporines...) can ?drive B.b into the cyst / "spore" form, which is insensitive (so allows the survival of B.b)?"
Yes. I've read such research. The issue researchers have with such studies is that they are conducted in vitro when in vivo evidence is needed. Optimally, if the evidence is there to support the use of tinidazole and metronidazole to help chronic Lyme disease patients improve, then a clinical trial should be conducted to demonstrate this. With positive outcomes, more doctors could then prescribe this treatment to far more patients with persisting symptoms.
"Of course the insurance companies are not willing to pay for expensive i.v. ABs several times per year, for the rest of your life. There have been LB patients who have sold their houses for more of such "therapy", even continued on credit... (That's an idea which just came to my mind: they are sort of "addicts"! If you don't take it again you become VERY miserable! "
The insurance companies aren't paying out - according to them - because it's their position that existing trials do not demonstrate to their satisfaction that longer term antibiotic treatment is effective. Even though there is some evidence that a subset of patients enrolled in trials showed improvement on longer term antibiotic treatment, that apparently isn't good enough for them. So they have declined patients' additional months of treatment.
This has changed, somewhat, in certain states which are passing laws requiring insurance companies to pay for longer term antibiotic treatment. Your guess is as good as mine how many states are going to pass such laws and how it is going to work out. I don't know. But I do know advocacy groups have been working diligently to get such laws passed.
"Do you know that heroine was synthesised and patented by BAYER in ?1898? That's a long and fascinating story... Roche made huge profits from Valium, which is an addictive drug also...)"
Interesting, historically - sure. But the story of heroin is not relevant to antibiotic use today. Over 100 years ago, drug companies were not what they are today, and drugs were created and tried empirically without using clinical trials. Coca cola contained cocaine, and was marketed not only as a beverage but as a drug. Medicine was very different back then and as such, many products were sold which were of questionable effectiveness for the conditions which they were said to treat.
(more)
For Chen-men (cont'd):
ReplyDelete"I know of two people who have achieved control over NB with cheap doxy, which in Sweden is the first line AB not only in (early) LD, but in (late) NB. Control over NB for more than a dozen years! I have been propagating this simple approach for more than a decade - but curiously no one seems to be interested. Why not?"
I have already responded to a comment you made similar to this one elsewhere on this blog. But to respond again in brief: There are doctors who are already applying this treatment approach in Europe and in the US. Some patients report improvement on it, and some do not. That is anecdotal. Dr. Donta completed a study on tetracycline use for chronic Lyme disease years ago, but to my knowledge it never made it to a clinical trial in the US - however, a trial in Europe has been underway that applies his approach to chronic Lyme disease patients. One has to await publication of results.
"So this has become a WHO / EBM therapy: fluid with glucose and some potassium and sodium ?chloride in it can save millions of lives."
Absolutely. With proper hydration and electrolytes, children can survive cholera and diarrhea due to other causes. Loss of life can be greatly reduced.
"That's simple, cheap, rational - and accepted! Why not try simple, cheap, rational doxy for NB instead of "irrational" ceftraxone, cf. / see my initial arguments?"
To whom exactly is your argument directed? I ask because it seems your concern is that doctors are not using doxycycline and other -cyclines to treat Lyme disease longer term, yet I've pointed out to you on more than one occasion and different posts on this blog on which you've left comments that doctors have, in fact, been using doxycycline to treat Lyme disease longer term.
If your argument is against the IDSA because they are not specifically promoting the use of doxycycline long term against chronic Lyme disease, the IDSA panelists who set guidelines would argue back with you that there is no evidence chronic Lyme disease is real and those who suffer from persisting symptoms after they've been treated using their guidelines have some kind of post-infectious condition.
That would be a different discussion than one where you state "why doesn't anyone try doxycycline for treating neuroborreliosis" - which I've already stated, a number of doctors have used it for such purpose. They have also used IV ceftriaxone, depending on the case.
"I'm still waiting for a "reply", some sort of answer to my comments..."
As stated above, I've replied to similar comments of yours between November 5, 2013 and today, Novermber 6, 2013. I suggest referring to my responses where you have commented elsewhere on this blog.
If there is something to which you think I have not responded in full or there is another question you want to ask, please pick one post on which to continue this discussion instead of posting similar comments on different articles all over the blog - a number of comments which are not related to the topic of discussion in the article. Thank you.
CO