FDA: 'Alternative' Treatment for Lyme Disease may Be Fatal

The FDA is looking into the death of a man who was treated with bismacine or chromocine, a alternative treatment for lyme disease. The treatment contains high amount of bismuth which is a heavy metal.

Lyme disease is transmitted by ticks and usualy presents with fever, rash, fatigue, and headache. It is usualy treated by a 2 week cource in antibiotics

www.cdc.gov...

WASHINGTON - At least one person has died after being injected with a purported treatment for Lyme disease, health officials said Friday in warning doctors and patients to avoid the unapproved product.

The product is called bismacine or chromocine, and is mixed individually by druggists for use by injection, the Food and Drug Administration said.

The FDA is investigating the April 20, 2006, death of a person treated with bismacine, which contains high amounts of the heavy metal bismuth. The agency also is probing several reported injuries.

L yme Disease

Originally posted by FredT
Lyme disease is transmitted by ticks and usualy presents with fever, rash, fatigue, and headache. It is usualy treated by a 2 week cource in antibiotics

Well, it's hardly proven that this is effective to actually erradicate the condition. I'm not surprised long term sufferers are now at such grave risk from an alternative treatment, since the Drs. are so quick to throw you a two week course of antibiotics with no way of knowing whether or not it worked and then just ignoring people who become chronicaly ill.

Originally posted by Relentless

Originally posted by FredT
Lyme disease is transmitted by ticks and usualy presents with fever, rash, fatigue, and headache. It is usualy treated by a 2 week cource in antibiotics

Well, it's hardly proven that this is effective to actually erradicate the condition. I'm not surprised long term sufferers are now at such grave risk from an alternative treatment, since the Drs. are so quick to throw you a two week course of antibiotics with no way of knowing whether or not it worked and then just ignoring people who become chronicaly ill.

Come now, is that problem that doctors are ignoring patients with Lyme disease, which is actually a very distinct illness and very hard to miss, or is it that people wh otend to get Lyme disease reside in medically underserved areas and are less likely to receive treatment until the disease has progressed a bit further than desired?

Use a little logic.

Mariella

Originally posted by bsl4doc
Come now, is that problem that doctors are ignoring patients with Lyme disease, which is actually a very distinct illness and very hard to miss,
...

Use a little logic.

Okay, read your medical journals Mariella. Lyme disease is NOT a distinct illness, is extremely hard to miss and there is no accurate test for it or whether or not it has been erradicated.

You know, I read your posts and all I can think is that you live in a country where medical care is really a LOT better than in the US, but lack of logic is not the problem here. I do think however that I wish every Dr. I had access to had your caring and attitude about medicine and the hypocratic oath. It just isn't there though.

Maryellen

Lyme disease hard to diagnose and test for?

Are you sure you're going to a doctor?

Lyme borreliosis, or Lyme disease, has EXTREMELY distinct symptoms that distinguish it from most other conditions. Look up Lyme disease and erythema migrans. As Lyme disease progresses, annular skin lesions develop at the sites of spirochete infection, as well as meningitis and/or carditis in severe cases. These symptoms are the same regardless of which rickettsial vector is the felon in your part of the world. When I was a third year student, I was lucky enough to have seen a case. My attending presented it, and it was fairly clear what was going on. Lesions, minor carditis progression, sensitivity to touch at leasion sites, and raised WBC levels indication infection. Also, you have to look at more than the patient. What season is it? Winter? Well, then look for another culprit. Summer, the tick breeding season? Very likely to be Lyme disease.

All you have to do to confirm the diagnosis is run an ELISA. VERY common procedure in nearly every hospital laboratory. After diagnosis, give the patient some amoxicillin (or alternate medication like erythromcin if they're allergic), and be done with it.

I fail to see what is difficult about diagnosing and treating Lyme borreliosis...

Mariella

Originally posted by Relentless

Well, it's hardly proven that this is effective to actually erradicate the condition. I'm not surprised long term sufferers are now at such grave risk from an alternative treatment, since the Drs. are so quick to throw you a two week course of antibiotics with no way of knowing whether or not it worked and then just ignoring people who become chronicaly ill.

I agree totally.

Originally posted by bsl4doc
All you have to do to confirm the diagnosis is run an ELISA. VERY common procedure in nearly every hospital laboratory. After diagnosis, give the patient some amoxicillin (or alternate medication like erythromcin if they're allergic), and be done with it.

I fail to see what is difficult about diagnosing and treating Lyme borreliosis...

Mariella

The ELISA is about 50% in accuracy at best and does nothing to show if the Lyme has been erradicated. You obviously don't know people who have sufferred for years with it.

Originally posted by Relentless
The ELISA is about 50% in accuracy at best and does nothing to show if the Lyme has been erradicated. You obviously don't know people who have sufferred for years with it.

Umm...sure. ELISA was 50% accurate when it was a new technology. Considering now they use DNA primers as the microassay plots which are specific down to the base, I think you may be a bit off on your numbers. Also, the exact purpose of it is to show if it has been erradicated. ELISA works best on patients suffering from Lyme disease for more than 2 weeks.

Mariella

Then my point stands. We are not getting that in the US. The insurance company decides what you can and can't be covered for. NO Dr. I have been to in 5 years hase run that test for me to rule out my problems.

Here's problem number two. If your insurance doesn't cover something or the Dr. doesn't order it and you go do it yourself at your own expense (now I am speaking of any disease) the findings will not be covered by the insurance.

I am sorry to say you just don't seem to get it. You run around dismissing real stories of real people with either a really altruistic or just plain naive view of your profession. I wish you were the typical medical proffessional we encounter in the US, but you are not, and I think you need to stop being so defensive of your chosen field and realize there are plenty of things wrong with it - at least in the US.

We aren't making these things up for heavens sake, we are reporting what is occuring. Oh, and about finding another Dr., these things are tracked here. You keep changing and you get tagged as a problem patient and then other Drs. refuse to see you. It's a mess and I'm not going to sit here and pretend it's not because you want to view the field through rose colored glasses.

Please take a step back, and stop assuming that anyone who sees the world differently than you as not knowing what they are talking about.

Originally posted by Relentless
Then my point stands. We are not getting that in the US. The insurance company decides what you can and can't be covered for. NO Dr. I have been to in 5 years hase run that test for me to rule out my problems.

That's probably because the problem isn't linked to an infection, rather than the after effects. An ELISA detects current infection by fluorescing viral and bacterial proteins. If you are simply suffering due to tissue damage related to an old infection, ELISA will not help. I was referring to active infections and diagnosing active infections when I mentioned ELISA. I wasn't aware you were talking about something much later after an infection.

Here's problem number two. If your insurance doesn't cover something or the Dr. doesn't order it and you go do it yourself at your own expense (now I am speaking of any disease) the findings will not be covered by the insurance.

And...? It's awfully difficult to find a doctor who won't prescribe an extra test if a patient wants it. It seems most members want to believe doctors are just in it for the money, so why would they resist you asking for a several thousand dollar test if it's just going to put cash in their own pockets, as well? Who loses by ordering another test? I think it's much more likely that the docs you're going to are trying to save YOU some time and money by not ordering tests they know would be fruitless. But, believe what you want. I know I can't change your mind.

I am sorry to say you just don't seem to get it.

Oh, right. Forgot you're omnipotent when it comes to medical issues. Sorry.

You run around dismissing real stories of real people with either a really altruistic or just plain naive view of your profession. I wish you were the typical medical proffessional we encounter in the US, but you are not, and I think you need to stop being so defensive of your chosen field and realize there are plenty of things wrong with it - at least in the US.

I'm not being defensive. I'm injecting a bit of objective fact and trying to present the other side, which most of you seem to ignore. God forbid there be a doctor, or, GASP, even many doctors out there, EVEN IN THE USA (!!!) who actually like to help people and don't see patients as cash cows for the milking.

I bet it would ruin your day to find out that bad docs are in the minority, just like every other profession has a minority of bad folks.

We aren't making these things up for heavens sake, we are reporting what is occuring.

I never said you were making it up. I just think you are in the minority. Bad stuff always gets more press than good stuff. If there is 1 bad doctor in a group of 10, who do you think you will hear more about? It's just like a joke our government in Italy has. "You never hear the success stories in the secret police, just the mistakes that cause someone to die." I think that's ABSOLUTELY true of the medical profession. Why would you start a thread about the 5 doctors you've seen who treated you well and didn't hassle you? You wouldn't. But you most CERTAINLY would start a thread about the ONE doc who treated you rudely, right?

Oh, and about finding another Dr., these things are tracked here. You keep changing and you get tagged as a problem patient and then other Drs. refuse to see you. It's a mess and I'm not going to sit here and pretend it's not because you want to view the field through rose colored glasses.

That's probably because you're being non-compliant. I don't see why flagging a non-com's charts is wrong. If you are a busy doctor with 15 charts in front of you, and you see that charts 10 and 13 have refused treatment several times, have walked out on appointments, or have had to be asked to leave a doctors office due to outburts (all of which I have witnessed in the emergency room, not pretty), then you can bet I would see the other 13 patients before them. Why risk not seeing a compliant patient by putting someone in front of them who may just hassle me and walk out anyways?

Please take a step back, and stop assuming that anyone who sees the world differently than you as not knowing what they are talking about.

Same to you =)

Mariella

Originally posted by bsl4doc
And...? It's awfully difficult to find a doctor who won't prescribe an extra test if a patient wants it. It seems most members want to believe doctors are just in it for the money, so why would they resist you asking for a several thousand dollar test if it's just going to put cash in their own pockets, as well? Who loses by ordering another test? I think it's much more likely that the docs you're going to are trying to save YOU some time and money by not ordering tests they know would be fruitless. But, believe what you want. I know I can't change your mind.

Geez - go ahead change my mind about this, explain to my why if the Dr. can't diagnose someone he shouldn't be ordering other tests? Why should I settle for just take this pill and accept your life is never going to improve? Why won't they call the real Drs. in NY who treated me for years and know this is real. Because the insurance they have contracted with pay them more to not get aggressive with additional tests?

I am happy for you that it is not this way in your country, I am happy for all of you who never have to face a chronic illness that Drs. don't want to deal with. I have literally been told - "I don't do this", I am here for people who get the flu and have high blood pressure and things I understand. Go somewhere else. Where are these great Drs.?

Here the good ones are maybe one in ten (I've been to enough PC's to know, and I know enough people who are going through the same thing.

That's all, story over, my initial statement still stands. No wonder people are at risk for dangerous solutions to problems like Lyme. It's not like they can lead a normal life and find help otherwise. I am done debating this because I am not getting into all the horror stories of how bad it really is. I've said enough.

LYB!

Lyme disease can and does cause permanent neuropathy if left untreated. This condition isn't really treatable. Is this what you are experiencing? Maybe that's why the docs don't bother testing. They know what it is and know they can't treat it.

Mariella

I think bsldoc may be right, in that your doctors may be simply up against a wall in terms of testing/treatment options, and I also believe you're right, Relentless, when you say 'it's no wonder people are eager for alternative treatments, can you blame them?'.

Indeed, you can't blame people for grasping at straws when that's all that's left to them.

I've had the pleasure of knowing Dr. Edward McNeil (friend of the family), and he's a pretty big name in the world of Lyme Disease research. I've read through a lot of his writings, and spoken to him about the disease, and the conclusion I keep coming to is sobering. Check out this article he wrote, specifically the summary at the bottom.

www.wildernetwork.org...

Summary; At the present time:
** Lab tests for Lyme disease are not 100% reliable.
** A clinical diagnosis should be made if lab tests are not decisive.
** For disseminated borreliosis, treatment still remains empiric, no specific treatment has been shown to be curative for an extended length of time although long symptom-free periods can occur.

There are limits to the powers of medicine and science, and Lyme Disease is a particularly painful example of that fact.

Relentless, you might enjoy reading more of what that site has to offer, and if you feel so inclined, get in touch with Dr. McNeil. He's a wonderful man, I'm sure you'll like him, and he's a veritable font of knowledge.

but, if they treat it,, then,, you WONT BE BACK
for them to charge you more money..........

hasnt ANYONE NOTICED???

hospitals are going PRIVATE???

that means PROFITS..........

just like smoking......

poor people are guinea pigs

the hospitals MUST MAKE MONEY NOW!!!
it is NO LONGER PUBLIC HEALTH ASSISTANCE

its a BUSINESS,........just like any other..............the BOTTOM DOLLAR$$

they have great painkillers that are CHEAP,SAFE,AND WORK GREAT, BUT..........

if they give you a NEW KIND, That MIGHT WORK, costs 10times as much,
and might even kill you,,

why then NOW they are in BUSINESS

Originally posted by yeah right
but, if they treat it,, then,, you WONT BE BACK
for them to charge you more money..........

hasnt ANYONE NOTICED???

hospitals are going PRIVATE???

that means PROFITS..........

just like smoking......

poor people are guinea pigs

the hospitals MUST MAKE MONEY NOW!!!
it is NO LONGER PUBLIC HEALTH ASSISTANCE

its a BUSINESS,........just like any other..............the BOTTOM DOLLAR$$

they have great painkillers that are CHEAP,SAFE,AND WORK GREAT, BUT..........

if they give you a NEW KIND, That MIGHT WORK, costs 10times as much,
and might even kill you,,

why then NOW they are in BUSINESS

But if a hospital makes sure everyone they treat leaves with a chronic illness, they will quickly run out of beds, as well as developing a rap as the hospital that never cures anyone.

I love it when a little logic disrupts crazy people.

Mariella

Originally posted by WyrdeOne
I think bsldoc may be right, in that your doctors may be simply up against a wall in terms of testing/treatment options, and I also believe you're right, Relentless, when you say 'it's no wonder people are eager for alternative treatments, can you blame them?'.

In fact, I'm seeing this a lot in the literature -- doctors frustrated with the limits set by the insurance companies (ran up against this one, myself) and patients who are too poor to afford meds and are skimping on critical meds or trying alternative treatments.

I worked for a bit with the EMTs (I was recommending some computer hardware for a city government for their ambulances (fire stations have ambulances) and saw over the course of 3 weeks worth of ride-alongs how bad it got.

They had people who simply couldn't afford meds and used alternatives (herbs, etc) and when things got bad (as they did on a regular basis), the ambulance would have to be called to take these folks to the nearest hospital.

Indeed, you can't blame people for grasping at straws when that's all that's left to them.

Which was exactly what was happening. Many of them were elderly.

I've had the pleasure of knowing Dr. Edward McNeil (friend of the family), and he's a pretty big name in the world of Lyme Disease research. I've read through a lot of his writings, and spoken to him about the disease, and the conclusion I keep coming to is sobering. Check out this article he wrote, specifically the summary at the bottom.

Thanks for the link!
www.wildernetwork.org...

What puzzles me is that I see people who talk about being diagnosed with chronic fatigue syndrome ALSO frequently mention that they have a case of Lyme disease that existed over the course of years that nobody knew they had. I have wondered if it's being overdiagnosed by some ... or just what the situation is.

You'd think it would be a lot more common in the 1950's era, when everyone was outdoors more often and there were no common anti-tick sprays and houses were not quite as bug-tight as they are nowadays. Hunting was common, particularly among the poor.

I'm sure it must have been present and frequently undiagnosed, but I wonder why we didn't see more of it back then.

Thanks for the link!

You're very welcome. Thank you, for the great response, you got me thinking with this next bit, and that's always appreciated.

You'd think it would be a lot more common in the 1950's era, when everyone was outdoors more often and there were no common anti-tick sprays and houses were not quite as bug-tight as they are nowadays. Hunting was common, particularly among the poor.

I'm sure it must have been present and frequently undiagnosed, but I wonder why we didn't see more of it back then.

Well, I know that various symptoms of the disease were identified and described long before people were aware of the common root. So, I went looking for a list of Lyme disease symptoms that were traditionally classified as different conditions.

I found this site, it's definitely official enough, but I don't know how comprehensive it is.

www.aldf.com...

Manifestations of what we now call Lyme disease were first reported in medical literature in Europe in 1883. Over the years, various clinical signs of this illness have been noted as separate medical conditions: acrodermatitis, chronica atrophicans (ACA), lymphadenosis benigna cutis (LABC), erythema migrans (EM), and lymphocytic meningradiculitis (Bannwarth's syndrome). However, these diverse manifestations were not recognized as indicators of a single infectious illness until 1975, when LD was described following an outbreak of apparent juvenile arthritis, preceded by a rash, among residents of Lyme, Connecticut.

So, I think that answers your question, about whether there were more cases of Lyme disease in the 50's (and earlier) than there are today. I think your reasoning is sound, it makes sense that our changing lifestyle has served to reduce the chances of infection. Also, we have better insulation, and better repellants, as you mentioned.

So, I bet if you add up the reported cases of the associated conditions, which we now know stem from Lyme disease, you'll find the number of infections was once much greater than it is today.

And, on a completely different note, I was doing some more thinking about the reaction of the body to an injection of a heavy metal salt solution, which is what the alternative treatment entailed (right?). Wouldn't the body try to expel the solution immediately, by any means available? I think I've read that injections of heavy metals lead to skin eruptions, which would signal to me that the body is trying to open a pathway to remove something it can't metabolize.

What if the purpose of the treatment was to try and bind the disease causing agent to the bismuth salt, and then let the body flush it out?

It's hard to believe that there wasn't some point behind the treatment, some logical reason in the mind of the doctor that led him to prescribe this solution. I'm not saying that the doctor isn't a crook, without regard for his patients, he could very well be. I just haven't yet given up the idea that there may have been some logical justification for his decision.




[edit on 27-7-2006 by WyrdeOne] Formatting, and formatting again.

[edit on 27-7-2006 by WyrdeOne]

Originally posted by bsl4doc

But if a hospital makes sure everyone they treat leaves with a chronic illness, they will quickly run out of beds, as well as developing a rap as the hospital that never cures anyone.

I love it when a little logic disrupts crazy people.

Mariella

Bsl4doc -

*smiles and says the following in a friendly tone meant for discussion*

The thing to remember in some of these discussions is that not everyone lives near teaching or research hospitals.

My local hospital has 300 beds and has a terrible reputation for botched surgeries and staff infections. Why do people still use that hospital? Because it is the only one in the county and the next nearest is 45 miles away.

There is one pulmonologist in the whole county and he is on staff.

There are two neurologists in the county but both are in private practice together so there is no independent second opinion.

The list goes on, but you get the idea.

As far as Lyme in my part of the country, there have been several people around me diagnosed with it but they had to travel to Lyme Literate Doctors (LLD's) in the next state for testing, diagnosis and treatment. Why travel? Because the doctors in my area say that Lyme doesn't exist here.

"It never has in the past, why would it exist here now?" - Intern at the ER.

I don't have Lyme disease, but I was pursuing information on it at one time because several of my symptoms matched it. None of my 8 doctors would write me an Rx to have either the Elisa or the Western Blot test done for it. I could have ordered the test myself but that would have been $190.00 out-of-pocket to have the test kit sent to me, $45.00 to have the test completed at my doc's office, $18.00 to have the kit shipped back to the company in California and then I would have received the results in a couple weeks.

Why didn't I do it? Because I was told by my doctors that, even if it did come back positive that I had Lyme, none of them were comfortable treating it because they had never seen a case or treated one, they had only read about it in med school.

The overall point here is that even a "bad" hospital will continue to have business because some people have no choice financially to choose another hospital or doctor.