Washington Post: " Dangerous unproven treatments for ‘chronic Lyme disease’ are on the rise"

[me/cfs 27931]

Article on a CDC report indicating widespread "chronic Lyme disease" misdiagnosis and warning about the dangers of long term antibiotic treatments. Those more Lyme literate may have some opinions regarding the content.

An increasing number of Americans with medically ambiguous symptoms are being misdiagnosed with “chronic Lyme disease” and prescribed dangerous and often expensive treatments that do not work, according to a new report.

In some instances, patients have died after receiving intensive, long-term and inappropriate courses of intravenous antibiotics that led to septic shock. In other cases, misdiagnosis caused dangerous delays in treatment of a patient’s actual underlying condition.

These incorrect diagnoses have existed for years. But public health officials and clinicians say they are alarmed because of the increasing severity and scope of some treatments in recent years, said Christina Nelson, a medical epidemiologist and author of a report released Thursday by the Centers for Disease Control and Prevention.

Many of the various treatments, including courses of intravenous antibiotics lasting months and years, have no evidence of effectiveness. Studies have shown that prolonged courses of intravenous antibiotics can often result in serious harm, including death.

https://www.washingtonpost.com/news...r-chronic-lyme-disease-cause-are-on-the-rise/

 

[duncan]

Possible alternative article: " Dangerous unresolved late stage Borrelia cases are on the rise"?

 

[flitza]

Possible alternative article: " Dangerous unresolved late stage Borrelia cases are on the rise"?

Hi Duncan. You have a link for that one?

 

[duncan]

Sorry, the post was tongue-in-cheek. My overt sarcasm skills have evaporated along with several other common brain skills.

But Lyme incidence - as well as other TBD's - is on the rise.That even the CDC acknowledges. As for late stage Lyme...well, you have to have a clinician who appreciates how to make that call; most cannot extricate themselves from the Great IgM/IgG Mystery.

 

[Valentijn]

Article on a CDC report indicating widespread "chronic Lyme disease" misdiagnosis and warning about the dangers of long term antibiotic treatments. Those more Lyme literate may have some opinions regarding the content.

So what's the CDC doing to improve diagnostic certainty of Lyme tests, and the difficulty of diagnosing the actual problems in these supposedly misdiagnosed patients? The current approach of "you don't have Lyme, you're probably just crazy" isn't working well for anyone.

 

[sjaakafhaak]

Thing is, there are no proven, accepted tests that can show that Lyme is the underlying problem, let alone that the Lyme treatments work. I have followed a lot of 'Lyme blogs' over a couple of years, but can't find a significant benefit from these treatments in any of them. Some get a bit better, but not more then people with CFS that do not follow these specific treatments.

I am afraid this results in a religious discussion between chronic Lyme believers and non-believers. The non believers think people with 'self diagnosed' Lyme are faking / crazy (since all tests are negative) while they do have an actual (biological) illness and are frustrated that this is not acknowledged.
Perhaps by being less fierce on it being lyme, and focusing on 'it might be Lyme, but we don't know yet' it opens more possibilities for the media to focus on the quest for answers to their symptoms instead of linking it to people being 'crazy for believing unproven tests'.

Please don't take any of this personal as I have no intention of insulting anyone.

 

[Dolphin]

Article seems to be related to this publication:

Marzec NS, Nelson C, Waldron PR, et al. Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease — United States. MMWR Morb Mortal Wkly Rep 2017;66:607–609. DOI: http://dx.doi.org/10.15585/mmwr.mm6623a3.

https://www.cdc.gov/mmwr/volumes/66/wr/mm6623a3.htm?s_cid=mm6623a3_w#suggestedcitation

 

[ljimbo423]

I really don't understand a chronic lyme treatment. It seems to me that if someone has chronic lyme, it would be due to a weakened or dysfunctional immune system. Most people's immune system clears it on there own, without intervention. If they don't, that suggests to me, an immune system problem.

A couple of years ago I got a flu, then a week or so later a cold. Within a week of the cold ending, I got a reactivation of the chicken pox virus (the shingles). Having a cold and a flu so close together, coupled with an already weaken immune system, lowered my immunity enough for the chicken pox virus to reactivate.

I started taking 1,500-2,000 mg a day of echinacea extract and within 24 hours the blisters stopped forming and the ones I had slowly went away. Does this make sense to anyone else - that a strong immune system should clear lyme and if it don't, then one's immunity is impaired in some way?

 

[duncan]

Perhaps a close approximation may be tertiary syphilis.

Don't think chronic Lyme - too much baggage tied there by too many concerns.Instead, think late stage Lyme, or tertiary Lyme, and the compare what happens with tertiary syphilis.

Imagine researchers writing 75 years ago that too many sufferers of tertiary syphilis are turning to alternative treatments, some possibly dangerous - without also pointing out that the reason for that is too many tertiary syphilis patients are left without adequate treatment... And then fail to demand that more research be conducted to find a cure.

I would not be surprised if this CDC position may be in part in response to an ILADS case definition released a month or two back offering a formal definition of chronic Lyme.

 

[sjaakafhaak]

Thing is, most of these cases have no formal Lyme diagnoses, but diagnosis is made via obscure tests that are not validated.

IMO it would be better if people would acknowledge that because of this, Lyme etc. is not necessarily the right diagnosis and people should not limit themselves to Lyme treatments. We should stress that these treatments are all experiments based on a hypothesis (as a last resort), not standard, proven treatments. So yes, there is risk involved, but people prefer to take that risk over living longer in their current condition.

 

[Valentijn]

I really don't understand a chronic lyme treatment. It seems to me that if someone has chronic lyme, it would be due to a weakened or dysfunctional immune system. Most people's immune system clears it on there own, without intervention. If they don't, that suggests to me, an immune system problem.

Some immune systems cannot be fixed. Then antibiotics are necessary to do the job instead.

 

[edawg81]

I think a LLMD should be the last dr on the list to see, to rule out any clinically accepted treatment beforehand. But most ME/CFS patients get to that point. For some it helps for others it does not. The risks and benefits of treatment are murky at best. Its a tough decision to make. The only thing that will help sort the severely sick out from the chronic lyme cases are A LOT of research, to define other illnesses (ME/CFS) vs lyme and a A RELIABLE DIAGNOSTIC TEST.

This is really a missed opportunity by government and research, and I know patient organizations are working their hardest to change that. More data and research is needed, a lot more. Until then I cannot fault any sick patient for trying experimental treatment or diagnosis. The last thing any patient wants to hear is its in your head, and we cannot help you. If it wasn't for that, then there would be no market for alternative integrative doctors.

 

[Dolphin]

Imagine researchers writing 75 years ago that too many sufferers of tertiary syphilis are turning to alternative treatments, some possibly dangerous - without also pointing out that the reason for that is too many tertiary syphilis patients are left without adequate treatment... And then fail to demand that more research be conducted to find a cure.

So what's the CDC doing to improve diagnostic certainty of Lyme tests, and the difficulty of diagnosing the actual problems in these supposedly misdiagnosed patients? The current approach of "you don't have Lyme, you're probably just crazy" isn't working well for anyone.

More research would be good. But the government isn't the only source of research funding.
I think the chronic Lyme community should be trying to raise funding for research through donations and fundraising.

 

[duncan]

@Dolphin , I'm pretty sure they do. In the UK, it's difficult to do so relative to ME/CFS when the general public think you are in opposition to Science. We know that is false. Still, we have to struggle to undo that misperception.

But the same hurdle presents to Lyme advocates.

 

[Dolphin]

I have seen quite a lot of gofund and similar appeals to support people trying therapies, not sure I recall seeing any appeals with links to research funds (though I only dip in and out of Lyme forums).

If a lot of people were donating I would expect some of them to be encouraging others to donate.

 

[duncan]

@Dolphin, I'm pretty sure it is happening. At the very least, you can see it on the legislative front in the US, on a state by state basis.

It's difficult to overcome dogma and general scientific inertia - that human indictment is not peculiar to ME/CFS.

 

[Gingergrrl]

I almost never post in the Lyme threads b/c I know so little on this topic but this is a sincere question. What is the role (if any) of IVIG in treating Lyme? Does it help the immune system to fight the infection (in conjunction with other treatments of course).

 

[duncan]

@Gingergrrl , the short answer is it is unknown in an RCT type setting (as far as I am aware).

Word of mouth is that IVIG helps many. I tried as I was IgG subclass 1 deficient, but failed the vaccine test, so I could not get insurance to pay - so I could not do.

But I have read some who have tried IVIG but did not return to health.

Wish I could try, though.

 

[Gingergrrl]

Word of mouth is that IVIG helps many. I tried as I was IgG subclass 1 deficient, but failed the vaccine test, so I could not get insurance to pay - so I could not do.

Thanks and I was just curious. I might be confused but I thought my doctor said if someone failed the vaccine challenge then they did qualify for IVIG? (I did not do it b/c in my case we were asking for high dose IVIG for autoimmunity vs. low dose for immune deficiency so it would not have been relevant).

Wish I could try, though.

What a bummer and I wish you could try it, too!

 

[duncan]

I likely expressed that incorrectly. I think it's the CVIDS challenge? I came up on the wrong end of it - perhaps that's worded better. Odds were I shouldn't have because I was IgG sublcass 1 deficient (I know you know how that works), but it is what it is. I am also out-of-range low on NK Cell function, but no one counts that.

Bottom line, no IVIG for me.

BTW, your point about immune issues for Lyme patients is spot-on for many. There are many good papers on the immune system-altering properties of Lyme, ie, Bb can compromise immune systems, particularly when in concert with other TBDs. Of course,for some, that talk borders on circular logic (although I would argue against that). Still, if you have your ear to the Lyme rail, you can hear the IVIG vibrations reverberate.

Thank you for your kind sentiments.