Just found out I have active lyme disease. I am stunned. Help!

[Wayne]

So here is what I don't understand about the alleged conspiracy to ignore chronic Lyme. Usually, conspiracy theories are about money -- big pharma has coopted the government to promote drugs, vaccines, etc. But here, the usual treatment for chronic Lyme is long-term drugs, with lots of doctors' visits, tests, etc. So what's the motive for the mainstream medicine/CDC conspiracy here?

My understanding is it's the insurance companies who would rather deny a claim for chronic Lyme than pay for long-term and/or intravenous antibiotics, which can easily run to $100K or more.

 

[xchocoholic]

Not to mention ALL the medical professionals who benefit from misdiagnosed patients. Neurologists, psychologists, gastroenterologists, etc etc. And the labs where the wrong tests are run and re-run.

Drug companies benefit from IBS, neuro and psych meds.

The research centers that always state that more studies need to be done benefit.

Then there's the colleges that charge tuition for educating more medical professionals. And receive grants for research.

It's all about the money. X

 

[pspa123]

So the insurance companies are somehow behind the 2010 Connecticut panel report that was convened by the attorney general in response to a suit brought at the urging of ILADS, heard extensive evidence from all sides including ILADS doctors and numerous patients, and concluded that long-term antibiotic treatment was not warranted and indeed could be risky?

I get that there is scientific disagreement here, but I don't find the conspiracy theories useful in this context.

 

[Wayne]

I get that there is scientific disagreement here, but I don't find the conspiracy theories useful in this context.

Since I'm not exactly sure what you're asking for, I'll just mention a book that I believe gives a lot history and answers to a lot of questions. If you decide to read it, hopefully it will provide you with what you're looking for.

Cure Unknown: Inside the Lyme Epidemic

When Pamela Weintraub, a science journalist, learned that her oldest son tested positive for Lyme disease, she thought she had found an answer to the symptoms that had been plaguing her family for years—but her nightmare had just begun. Almost everything about Lyme disease turned out to be deeply controversial, from the microbe causing the infection, to the length and type of treatment and the kind of practitioner needed.

On one side of the fight, the scientists who first studied Lyme describe a disease transmitted by a deer tick that is hard to catch but easy to cure no matter how advanced the case. On the other side, rebel doctors insist that Lyme and a soup of “co-infections” cause a complicated spectrum of illness often dramatically different – and far more difficult to treat – than the original researchers claim. Instead of just swollen knees and a rash, patients can experience exhaustion, disabling pain, and a “Lyme fog” that leaves them dazed and confused. As patients struggle for answers, once-treatable infections become chronic.

In this nuanced picture of the intense controversy and crippling uncertainty surrounding Lyme disease, Pamela Weintraub sheds light on one of the angriest medical disputes raging today. The most comprehensive book ever written about the past, present and future of Lyme disease, Cure Unknown exposes the ticking clock of a raging epidemic and the vulnerability we all share.

 

[pspa123]

I found a very helpful explanation by Dr. Richard Horowitz, a very strong advocate for chronic Lyme, which would seem a useful screening guideline.

Lyme disease is a multisystemic illness. If you have a cluster of classic presenting symptoms, including fatigue, joint and muscle pain, neuropathic pain (tingling, numbness and burning), sleep disorders, memory and concentration problems, as well as anxiety and/or depression, there is a good possibility that you suffer from a tick-borne disorder. Although these same symptoms can overlap other diseases, there are certain classic symptoms which point towards Lyme. Lyme disease symptoms tend to come and go with good and bad days. The joint and muscle pain as well as the neuropathic pain tend to migrate around the body. These symptoms may improve with antibiotic therapy, or worsen with antibiotics (a Jarish-Herxheimer reaction when the bacteria is being killed off), and women often report an increase in symptoms right before, during, or after their menstrual cycle.

 

[Wayne]

My understanding is it's the insurance companies who would rather deny a claim for chronic Lyme than pay for long-term and/or intravenous antibiotics, which can easily run to $100K or more.

(From the linked article below)

"Even with decent health insurance, Lyme disease guarantees most families a financial hardship. Insurance companies can base their coverage on treatment guidelines issued by leading national medical organizations, which restrict access to care. Our daughter’s doctors, myriad medical tests, prescriptions, and supplements run at least several thousand dollars per month, out of pocket."

http://www.today.com/parents/insidious-illness-how-lyme-disease-derailed-teen-her-family-2D79661315

 

[Wayne]

Insurance companies can base their coverage on treatment guidelines issued by leading national medical organizations.

My understanding is the medical organization IDSA (Infectious Disease Society of America) is hardly more than a mouthpiece for the insurance companies when it comes to Lyme treatment guidelines. I seem to recall they were on the losing end of a legal battle initiated by the DA of Connecticut regarding their Lyme treatment guidelines. CT is ground zero for Lyme in America.

 

[DataDude]

pspa123, thanks for sharing Horowitz's additional diagnostic criteria

Though Horowitz offers them as clarifying matters, I think they embody the vagueness that plagues medical advice in the CFS/ME/Lyme world. He offers three pieces of help:

1. that symptoms get better and worse - this is common to innumerable medical conditions (think Multiple Slecrosis, Parkinson's, arthritis, etc) and doesn't meaningfully differentiate the presenting symptoms from any other condition,
2. that the symptoms migrate around the body - again, this is not unique to Lyme,
3. they get worse for some women before, during or after menstruation - some women who are not chronically ill also feel worse before, during or after menstruation, so again this tells us nothing.

I definitely appreciate the spirit with which this information was shared, but think Horowitz is not offering insight here.

 

[PhoenixBurger]

I agree with the above. I realize everyone is just trying to find answers. But I think there's a lot of "LLMDs" that are making money off of this. When "everything is lyme disease" simply because we can't figure out what it is, something is wrong.

I fell down th lyme disease rabbit hole when I was searching for answers as well. I found a bunch of doctors who are quacks, kooks, lacked medical degrees, and literally blamed every single symptom on Lyme disease.

No matter what it was.

"Are you easily angered? That's a lyme disease!"
"Do you get hungry too early in the afternoons? That's lyme disease!"
"Or maybe it's borriela."
"You probably have co-infection's because youve got toenail fungus."

It was ridiculous.

The entire lyme disease medical scene struck me as being a bunch of opportunists taking advantage of people's lack of diagnosis.

If you read the post immediately above mine, it actually sounds like he's describing herpes viruses, more than anything else. Those are hallmarks of herpes viruses from beginning to end.

I can tell you firsthand as somebody who has tested positive for current and active lyme disease infection… IGM… (and subsequently negative on every other confirmatory test known to mankind) That the testing simply is not accurate enough to be reliable.

But it gets worse when the doctors say that all the negatives are actually false negatives. So then what. I've got one false positive many false negatives? Boy that's consusing isn't it. I suppose as long as I part with my cash since you don't take insurance Mr. Lyme disease doctor, you'll tell me I'm positive no matter what right?

Oh and here's massive doses of antibiotics. And if you get side effects? That's not side effects from damage you're doing to your body with the antibiotics. It's Herxing. You're actually killing off those nasty bugs. You're not destroying your body with prescription chemicals.

I am not trying to offend anybody here, and I know that it gives you hope to think that youve got something you can treat. But I really believe it's a scapegoat and a catchall industry that takes advantage of consumers who don't have a diagnosis yet.

 

[duncan]

There are charlatans and mercenaries in many fields of medicine, I'd wager. Lyme certainly has its share. But there are plenty of good ILADS clinicians, just as there are lots of good IDSA doctors.

A key question is who has the best handle on the Lyme problems? And on an individual level, which doctors are genuinely concerned about the patient - as opposed to $'s or dogma?

Frequently, the answer is irrespective of Lyme school.