The panel heard from some of the authors of IDSA’s guidelines, who concluded there is no convincing biologic evidence for symptomatic, chronic Borrelia burgdorferi infection after completion of the recommended treatment for Lyme disease, which, according to IDSA’s guidelines, is 10-28 days, depending on the stage of illness. Longer-term antibiotics may be dangerous and can lead to complications, according to IDSA.A short note on the misleading statement about "no convincing biologic evidence": Its a red herring. Not only is there evidence, they have never proven that chronic infection cannot be possible. When denying people treatment, don't you have the burden of proof here?
As I've said before, I'm not a fan of antibiotics. I've yet to be convinced that they are the right treatment for Lyme Disease. Though, I must admit, that in my history with the illness, thus far, I have seen the most sustainable improvement when I was getting injected antibiotics for approximately a year. I was not cured, but I was definitely improved. And I definitely declined symptomatically once the antibiotics were stopped because Harvard Pilgrim Health Care retroactively denied coverage of my treatment. (Is that legal, by the way? To demand to be repaid for a year's worth of treatment which they had already paid for?)
There may well be other, better treatments out there, but since the IDSA has been allowed to disproportionately influence the entire medical community regarding Lyme Disease, no one is researching treatment because the IDSA denies that any treatment is needed. Therefore, it is the only option being offered to people who suffer long-term from Lyme. Since the objection to allowing this treatment is such a strong concern for the deleterious effects and grave risks, let's just consider this claim about the "dangers" and "complications" of longer-term antibiotics.
Here's a recent study on the subject:
Safety of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease
This group studied 200 patients with neurologic Lyme Disease who received intravenous antibiotics for a mean duration of 188 days (a total of 23,654 IVD-days.) A summary of the results:
- no one died
- 3.5% experienced allergic reactions to the antibiotic
- 1.0% had gallbladder toxicity
- IVD complications occurred in 15 patients (7.5%)
- IVD complications represented an incidence of 0.63 per 1,000 IVD-days
- 6 suspected line infections for an incidence of 0.25 per 1,000 IVD-days.
- Only one of the IVD infections was confirmed
- resistant organisms were cultured from any patient.
Now, I don't want to be that 1 person with the gallbladder toxicity. Allergic reactions are no fun, either. Nor is an incidental infection. Still, I've been suffering for 5 years. I can't hold a job due to cognitive unreliability and unrelenting fatigue. The risks my father took with cancer treatments were far more significant and no one balked at him or his doctors for giving them a try. As a patient, I am very comfortable with the risks seen here. These seem like pretty good odds to face for the chance of getting my health back. Indeed, here is the study's conclusion:
CONCLUSION: Prolonged intravenous antibiotic therapy is associated with low morbidity and no IVD-related mortality in patients referred for treatment of neurologic Lyme disease. With proper IVD care, the risk of extended antibiotic therapy in these patients appears to be low.
Tell me again. What exactly is the IDSA's scientific and compassionate reason for tyrannically denying me the opportunity for treatment?
Hi Allison:
ReplyDeleteI don't want to take a position on the question of antibiotic treatment, since I don't have enough information one way or the other. But I did want to address a couple of the specific things you raise:
1) It is legal for Harvard Pilgrim to audit the care provided and retroactively deny coverage if, according to its standards, the care was not "medically necessary". HOWEVER - and this is important - unless your doctor's office had you sign a statement saying that you agreed to be financially responsible if the care provided to you was denied by your insurer, it is probably a violation of the doctor's contract with HPHC to try to collect the payment from you. So the doctor basically has to eat it, unless you signed such a statement at the time that the care was provided. What you want to do with that information is, of course, up to you. Let me know if you have any questions about it.
2. The small study you cited notwithstanding, there are significant risks to taking antibiotics, especially long-term. Although none of the 200 people in the study died from the therapy, fatal allergic reactions are well-known and are not extremely rare. In addition, from the information given in the abstract (the full article was not available online), it appears that the study did not look at the risk of infection with C.difficile, a condition that is extremely common with long-term antibiotic therapy and which is dangerous as well as miserable. This is a bug that lives in the colon and which is normally kept under control by other colonic flora. When you take antibiotics, the healthy bacteria are killed off and the c.diff takes over, causing dysentery (i.e. constant, uncontrollable, bloody diarrhea, nausea, weight loss, dehydration, etc.). I know about this because, the one time that I needed prolonged IV antibiotic therapy, I got c.diff. It was horrible and difficult to erradicate. A friend of mine got c.diff. and her doctors were not able to control the infection, even with medication, and she ended up having part of her colon removed. That was several years ago, and she's plagued with severe digestive problems to this day. I've also gotten line infections. In addition to these complications, there is also the risk to the entire human population of creating resistant organisms. This happens even if a particular patient doesn't manifest symptoms of infection with the resistant organism. If a patient is known to have an infection for which antibiotics are effective, the balance of risks swings toward treating that person. But if that evidence is missing or incomplete, treatment with antibiotics is far from benign, both for that individual and for the entire population.
3. Because only the abstract, not the article, was available, we can't evaluated either the methodology or the statistical analysis of the study. However, I'm suspicious that by reporting out the rates of particular complications "per 1000 IVD days", the true risks may seem to be less than they actually are. In this group, between 5-10% of patients experienced one of the listed complications. They were followed for an average of approx 6 months each.
As I said before, I don't know if IV antibiotics are an effective treatment for you or not. But I know that you've been struggling with the frustration of not understanding why this treatment is not being made available to you, and I hope this is helpful in explaining some of the reasons why it's not a simple or clear-cut issue. I fervently hope that you are able to find healing soon - I do know how completely disheartening and agonizing it is to suffer with chronic illness. Many blessings to you.
Love,
Wendy
Thank you, Wendy. Its important to have the conversation be full and have all things considered. I so appreciate your rich understanding of medicine and the system.
ReplyDeleteOne question I have for you: would you or your friend have opted out of the antibiotic treatment given this risk?
Isn't this the risk for anybody who needs long-term treatment? Why is it that some are allowed to take that risk while others are not?
Of course, with Lyme, this line about risk is used as a supporting argument for denying treatment because they can't prove that chronic illness does not exist. So, there is a complexity to questioning their concern about risk. Can this be the only reason to deny people this treatment when many have improved by it?
Again, I ask all this when I don't even want to deal with long-term antibiotics. If nothing else is available, though, I'd accept the risk if I could get my life back by doing it.
The difference between your situation and mine is that I was known to have a type of infection which had a high likelihood of being quickly (within days to weeks) fatal if I didn't get the antibiotics immediately AND the antibiotics were virtually certain to quickly cure it, whereas (as you point out) it is far from clear that antibiotics are at all effective for your illness. If there was a high probability that you could, indeed, get your life back by utilizing this therapy, then of course you'd take the risk. But, given the uncertainty in this situation, I don't think that I'd go for it, even though there isn't another option. For one thing, if you end up with c.diff, then it's much more dangerous to use antibiotics in the future, which could seriously jeopardize your health if you get a serious infection. My friend, for example, may not be able to use antibiotics again, period. In her case, I think that she would have rather never taken them and done her best to help her body heal in some other way (her underlying infection wasn't cured until she had the colectomy, either).
ReplyDeleteAnother thing that I didn't mention before (that I'm sure you're aware of) is that the antibiotics themselves can make you feel weird in all kinds of ways, and that some are actually neurotoxic. This, too, would probably swing me away from long-term antibiotic use unless it was extremely likely to cure me. I fully understand that I'm not you, and I'm not in your precise shoes. However, I also deal with chronic illness every day, some aspects of which can be treated (generally only in part) and some of which are still a mystery to the doctors, either in terms of what's causing them or what to do about it. Like you, every day I must decide which ailments I will try to fight and which to try to adapt to. It can be ugly, but it's life.
Earlier on in my quest, I saw many, many doctors and submitted to some treatments that I wouldn't use now. Yes, I was given the choice, but in some cases I think that the doctors were somewhat grasping at straws and, knowing what I know now, I believe that there are some situations in which doctors need to show more restraint or even be reined in by external forces. In other words, in some cases I don't think I should have had the choice. No treatment is better than treatment that does more harm than good.
If I were in your situation, I think that I'd focus on trying to control the secondary illness and symptoms that bother you most, especially the neurologic stuff. Rather than find a neurologist who specializes in Lyme, can you find a neurologist who specializes in your type of neurologic disease? I read your entry about getting tests, but I wasn't sure whether you were finished with them. Have you received an overall evaluation/interpretation of the test results both individually and as a whole?
Of course you want to get as much of your normal life back as you can. But please be cautious about the risks you know you are taking for a treatment whose benefits are, at best, uncertain. Take care, Allison.
As I've said before, I'm not seeking antibiotic treatment for myself.
ReplyDeleteYes, I'm seeing a neurologist who specializes in the autoimmune disorders, not Lyme. I'm seeking to get those treated. Fact is, though, that all treatment for any ailments deemed to have sprung from having had Lyme get denied by insurance companies because, well, IDSA says that if you had your 4 weeks of antibiotics, you're cured. Nothing more will be covered. Though we've known or a year that I need to have treatment for CIDP, the docs are afraid to try and get stuck with the medical bills when the insurance company retroactively denies because the etiology of my disorder is said to be Lyme.
So, I'm arguing the "who gets to control the concern about risk" question re: the antibiotics because it has wider ramifications.
That said, many, many, many Lyme patients that have gotten their lives back swear by the long-term antibiotic treatment they received. All the other "protocols" out there seem to have only temporary impact. There are even cases of patients on the IV antibiotics who were improving, then insurance cut them off and they died within weeks. There is a lot more clinical evidence that antibiotics are helping patients than there is that it is hurting them. But since no one is funding research, everybody is really winging it.
What bothers me about the IDSA dictate and how it is getting used is that they don't have any science to back up their claims, either. So, if I'm a doctor/patient team that sees no alternatives and the patient has become completely dysfunctional, I can see it being reasonable to say, "We think this is worth the risk."
(I'm in relatively good shape, in that most days I can walk and I haven't had spinal issues other than the neck. I have predominantly neuro issues, so I feel a little more able to say, "I don't want the antibiotic route." But, many, many Lyme patients are writhing in excruciating pain, with palsies and far more frequent seizures than I have. I've seen these patients. If I were in their position, I'd likely be begging for the antibiotics. Screaming for anything.
Oh, I should also say, that the problem with the IDSA's denial of a chronic condition seems to be all about denying antibiotic treatment. What about other treatment possibilities? We're denied those, as well. If they would limit their guidelines to saying that they don't agree with the use of long-term antibiotics, it would be more manageable. We could consider other treatment approaches. But, they are using the antibiotic treatment as the reason for denying that patients are sick and in need of treatment at all.
ReplyDeleteAllison, I completely agree with you that high quality studies are needed, both for antibiotic therapy and for other potential treatments. And of course it is immoral and unethical to deny care or coverage to people who are ill and suffering. If they don't know what's going on, it's their duty to keep trying to figure it out. It is an all too common occurence for some doctors, when they are unable to explain why their patient is ill, to blame the patient, either accusing them of faking symptoms, not disclosing "the whole story", or some other "crime", and thereby creating a justification (in their own minds) for abandoning us. (This happened to me when I had, of all things, a broken pelvis; this phenomenon is not limited to Lyme patients.) Above all else, we patients need caregivers who will stick with us compassionately and keep searching for causes and effective treatments for our illnesses. For them to behave otherwise is simply unconscionable.
ReplyDeleteI don't understand how your insurer can deny you coverage for treatment of a documented autoimmune disease, regardless of the underlying cause or trigger of that disease. Assuming that your CIDP diagnosis is well-documented and supported by the relevant tests, treatment should be covered. If this is your situation, and you are denied coverage, I would encourage you to appeal the denial. After all, if (adopting the IDSA viewpoint) your illness is not caused by chronic Lyme because chronic Lyme doesn't exist, then it must be caused by something else - something covered by insurance.
Any progress on getting your doctor's appointment rescheduled?