Topic: Topeka doctor pleads no-contest to manslaughter re Lymie
CaliforniaLyme
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Topeka doctor pleads no-contest to manslaughter charge
Associated Press - November 23, 2007 7:14 AM ET
TOPEKA, Kan. (AP) - A Topeka doctor pleads no-contest to reckless involuntary manslaughter for the death of a woman he was treating for Lyme disease using an unauthorized method.
Dr. John Toth (TOATH) also agreed to surrender his medical license for seriously injuring a second patient using the same method.
Toth initially was charged with reckless second-degree murder for the death of Beverly Wunder of Topeka, and reckless aggravated battery for his treatment of Bertha "Susie" Groves. But prosecutors dropped the battery charge because Groves did not want Toth prosecuted in her case.
Wunder and Groves were Lyme disease patients, and Toth treated them with intravenous infusions of a "heavy metal" known as bismuth, which has not been approved for such a use.
Wunder died a year after collapsing in Toth's office on April 18, 2005, after receiving at least a second infusion of bismuth.
Groves was hospitalized in serious condition with kidney failure after receiving a similar treatment. But she said Toth's treatment was beneficial and substantially improved her health.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bettyg
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how sad for these 2 women who died and their families!
double checkd to make sure we didnt have this doc on our lists!!
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Melanie Reber
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Just to set the record straight...
There was ONE death, that of Beverly Wunder. The other charges were dropped on the second woman because she did not want the doctor charged, as she felt the procedure helped her (and others)tremendously.
I am not for or against this procedure or this physician...I only felt that all the facts (which have been previously published, and echo the last line of the above article) needed to be here too.
My heart aches every time we lose another TBD patient, so I am not making light of this loss. None of us should have to endure the devastation these diseases cause on our bodies...or the continued ill-effects of our chosen treatments.
Posts: 7052 | From Colorado | Registered: Mar 2003
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And as betty said, that dr is/was not on our list of "LLMD's".
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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oxygenbabe
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There is a doctor in Manhattan who uses bismacine. I spoke with a former lyme patient--sixteen years of suffering and working only part time as a therapist because of lyme disability and crying into her pillow every night, she said. Nothing really helped her including mainstream abx and alternative tx. She went to him, got his IV treatments including IV bismacine, and it worked. She's well and lyme free. She encouraged me strongly to go see him, and she also didn't want to talk too much about the horrible misery of her lost youth (consider that all her childbearing years were wasted) but just to glory in her recovery. This was a year post-treatment.
She encouraged me to do it. I would *never* do it. I'm sensitive, I can't tolerate stuff as it is, and I don't need an IV heavy metal. Bismuth *does* kill borrelia.
On the other hand--someone posted on here in the last day or two that their babesia treatment (the standard mepron, zith, and whatever else) was leaving them so weak they couldn't lift their books, and their pee was tea colored, and they couldn't get hold of their LLMD. This person came onto this board at night. So mainstream medicine can be just as dangerous at times, and where was the LLMD? Not on call because of the holidays? Someone is always supposed to be on call for emergencies. Someone else advised them to get to the ER immediately as it sounded like their kidneys were failing.
Similarly, someone else posted that she is alone in a hotel room (maybe jenchasinglyme? Can't remember who) doing hyperbaric and IV rocephin and lost her gallbladder. "Lost her gallbladder" rolls off the tongue but what that means is her gallbladder, an organ you do need, got so clogged up from sludge from rocephin it failed and she had to have surgery to remove it. Her doctor was encouraging her to go right back on the protocol, and she wanted another week to recover from the surgery. She is posting *here*. Why isn't her doctor listening to her instead of pushing her?
I don't think it's that legitimate to divide practitioners into alternative and "top tier" etc. We're back to the same arguments as before Cave left? Doctors are either ethical or not. They are either responsible and cautious or not. They can harm with the typically prescribed antibiotics and antimalarials and they can harm with off label treatments. There is a doctor in Long Island who is now being investigated by the district attorney for possible criminal negligence. He was a pain doctor and anesthetist and he used such sloppy technique, reusing syringes, that he spread a few cases of HepC and maybe HIV among his patients. He also used a lawyer to resist having all his patient folders examined and the patients notified, so it took the state THREE YEARS to be able to do that.
I have learned from my own sobering experiences this year to think and think again about any treatment. Even so, I find myself making mistakes no matter HOW carefully I try to protect myself. I have also learned about manufacturer deception a lot this year, from olive oil cut with sunflower seed oil (most commercial brands) to cod liver oil made from any fish, and with synthetic A and D added, to the fact that Monsanto won in Pennsylvania and now dairies who don't use bovine growth hormones are NOT allowed to advertise that on their labels, so that nobody in Pennyslvania who didn't read the article I did will even know.
In this time, we all need to be careful and think for ourselves.
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Melanie Reber
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I think your points are well thought out Oxygenbabe. Who knows why or how the Bismacine treatment seams to have helped these patients...but they sure do swear that it did.
It reminds me of when I first joined LN and the hot topic was ICTH treatment. There were so many very strong opinions for and against it. (if you remember, they were constantly being edited and deleted as well)
Some swore that it helped to save their lives and some swore that it took lives. Ultimately, the practice was stopped, but those that it helped will be forever grateful for the opportunity they had to try it first. And, I am certain, the family of the one that it killed will be forever grateful that the practice was stopped...just like the family of Beverly Wunder above.
My question is: Why do we try to make our world so Black and White that we completely dismiss the Grey area in between? Why couldn't it have been both helpful and harmful? Many things are.
Conventional ABX have both helped and harmed me. Supplemental Herbs have both helped and harmed me.
Nothing about these diseases are easy. Nothing about these diseases are clear-cut. Not in the diagnosing nor in the treating.
Posts: 7052 | From Colorado | Registered: Mar 2003
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oxygenbabe
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"Bismuth and mercury, both heavy metals, and arsenic, a light metallike element, have destructive effects upon the twirling spirochete which causes syphilis. In the usual modern treatment some compound of arsenic, such as Neosalvarsan, is used as the main weapon, some form of mercury or bismuth as supplement. The arsenic compound is usually injected into a vein in the arm. Mercury or bismuth compounds are injected into the rump."
Bismuth does kill spirochetes. In any case, I totally agree with you, Melanie.
Posts: 2276 | From united states | Registered: Jun 2004
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Keebler
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-
oxygenbabe - thanks for your thoughtful letter here. [added]
==
Melanie,
excellent points. Ditto and copying for emphasis:
My question is: Why do we try to make our world so Black and White that we completely dismiss the Grey area in between? Why couldn't it have been both helpful and harmful? Many things are.
Conventional ABX have both helped and harmed me. Supplemental Herbs have both helped and harmed me.
Nothing about these diseases are easy. Nothing about these diseases are clear-cut. Not in the diagnosing nor in the treating.
end quote - ============
I also think that if every person were to be tested to see if they have adequate Cytochrome P-450 enzymes a huge percentage of fatalities could be avoid.
Excess porphyrins are usually never checked on autopsies - but they shoud be. I think the connection between a person's liver should ALWAYS be considered regarding any treatment. Kidney's too.
And, again, none of this is ever easy in such complex cases.
-
[ 25. November 2007, 08:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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map1131
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Cave, as a support group we really need you figure out how to write a post without insulting those of us who have been there done that. Done that can also be from top tier llmd?
"any who wants to believe that all alternatives/supps are safe."
Do you understand that sentence does not represent what anyone believes who comes to this board to help others?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Bismuth is FDA approved in oral medications so be aware that if you want to avoid this heavy metal watch out for antacids. The most well known one is Pepto-Bismol - common name: Pink Bismuth.
From the Pepto-Bismol site: The active ingredient in Pepto-Bismol contains bismuth.
(from drugs.com):
Pepto-Bismol use is contraindicated with the following:
Aspirin or other salicylates: May cause salicylate toxicity.
Corticosteroids: May decrease effectiveness.
Insulin: Drug may increase glucose-lowering effect of insulin.
Methotrexate: Drug may increase effects and toxicity of methotrexate.
Spironolactone: Drug may interfere with diuretic effect.
Sulfinpyrazone: Drug may interfere with uricosuric effect.
Tetracyclines: Bismuth subsalicylate may reduce GI absorption of tetracyclines and diminish their effectiveness.
Valproic acid: Drug may increase free fraction of valproic acid, leading to toxicity.
Looking
Posts: 590 | From Canada | Registered: Oct 2007
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posted
So tragic for everyone involved. I agree w/ Cavie that this may serve as a good warning re: dangerous experimental treatments.
Posts: 390 | From Oakland, CA | Registered: May 2007
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CaliforniaLyme
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Yup- a good warning!!! & good letter, Oxy!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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quote:Originally posted by fancykat: I would think there is a big difference between receiving an infusion and getting a shot (or taking a spoonful of pepto).
Absolutely!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymebytes
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I am sure this Md's assumption was based on the fact that when syphilis, a spirochete, was first discovered it too was treated with heavy metal "poisoning". Idiotic, he didn't know any better.
Truthfinder
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Great post, Oxy. And excellent point, map1131.
You've gotta love our media..... one lawsuit from the death from an alternative treatment and it hits the front pages. Tens of thousands of deaths and lawsuits resulting from orthodox, `proven' treatments aren't worth mentioning because they have become routine. I guess they will print whatever people want to gobble up as ``important''.
Aren't deaths from ALL forms of medicine important?
I realize that mistakes happen and deaths occur in *all areas of medicine, and as someone recently pointed out in another thread, `One man's medicine is another man's poison.'
* (Except maybe homeopathy. I think there is ONE case where self-administered homeopathic medicine is `suspected', but not positively identified as the culprit.)
This poor woman who was helped by the Bismuth treatments must feel horrible - seeing her practitioner prosecuted. Must be like watching your LLMD get hammered by some state medical licensing board.
***''Do the practitioners who advise such 'experimental' treatments check out their patients THOROUGHLY beforehand?''***
Probably much better than orthodox ducks do.
When I was recently in the hospital, they gave me a drug (which I didn't want to take). Found out later.....the basic pamphlet that comes with this drug specifically states that it should not be given to people with low blood calcium.
These idiot docs (all 3 of them) failed to note that the blood tests that THEY ordered showed I had low blood calcium. I won't go into all the side effects I had from that stupid drug, and nobody associated THOSE with this medication, either. Instead I was given more drugs to counteract the side effects of the original drug that should never have been given. I didn't die, so I guess this doesn't count.
And people wonder why I love homeopathy.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Peacesoul
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quote:Originally posted by Truthfinder: .
You've gotta love our media..... one lawsuit from the death from an alternative treatment and it hits the front pages. Tens of thousands of deaths and lawsuits resulting from orthodox, `proven' treatments aren't worth mentioning because they have become routine. I guess they will print whatever people want to gobble up as ``important''.
Aren't deaths from ALL forms of medicine important?
I realize that mistakes happen and deaths occur in *all areas of medicine, and as someone recently pointed out in another thread, `One man's medicine is another man's poison.'
That sums it all up right here. There are probably more deaths from approved phamracuticals than any alternative.
One just has to be smart, research and make very educated decisions about their health
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quote:Originally posted by Melanie Reber: Just to set the record straight...
There was ONE death, that of Beverly Wunder. The other charges were dropped on the second woman because she did not want the doctor charged, as she felt the procedure helped her (and others)tremendously.
I am not for or against this procedure or this physician...I only felt that all the facts (which have been previously published, and echo the last line of the above article) needed to be here too.
My heart aches every time we lose another TBD patient, so I am not making light of this loss. None of us should have to endure the devastation these diseases cause on our bodies...or the continued ill-effects of our chosen treatments.
I am Beverly Wunder's daughter, the woman who died. Also, to set the record even straighter, she did NOT have lyme disease, at all. No bloodwork showed it, it was a fraudulent diagnosis by Toth. She spent a year in a semi-vegetative state before she died a year and 2 days after the collapse. She was only 47. This has been hell on our family, and I thank you all who have expressed condolances or sadness on behalf of myself and my family. My mom's death was completely pointless, at the hands of a greedy doctor who still believes he is 100% innocent. The other lady is dillusional if she truly thinks Toth helped her, give me a break. You can't tell me that going into kidney failure and being on dialysis "improves" your health!! That ****es me off something awful, this whole thing does!! I would have liked to see him get jail time, but at least he'll get probation and lose his license and never be able to do this to anyone else. I hope the memories of what he did will haunt him forever.
Posts: 3 | From Olathe, KS | Registered: Nov 2007
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Melanie Reber
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Hi Melanie,
I just wanted to say that I am very sorry for your loss, and for the pain that your family has had to go through.
Please accept my most sincere condolences, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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SForsgren
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The use of conventional or alternative therapies always should be evaluated for safety and efficacy. There are certainly risks with all therapies. I believe, however, that the benefits outweight the risks by far when appropriately adminsitered and do NOT believe that this incident should deter people from alternative therapies, beyond possibly Bismacine.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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CaliforniaLyme
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I am sorry about your Mom. I can understand Dr. Toth diagnosing your Mom without bloodwork because many Lyme doctors do that, it is a clinical diagnosis. About half of our local support group is blood negative and they have all been helped. But it leaves room for terrible mistakes.
I am so sorry your Mom did not really have it and that you have all suffered like you have and have lost her. Thank you for coming on and writing on behalf of her. IV Bismuth is not a therapy I have EVER heard of ANY Lyme doc doing except Dr. Toth.
Prayers for you & your family- Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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oxygenbabe
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I'm sorry too, Melanie W-B. Cave, you make a valid point that pubmed is a decent source--except of course in Vioxx, Avandia, Epo (now has new warnings after years of use) etc etc etc. Even the rule of thumb a friend follows--don't take any drug until it's been out in the marketplace 2 years--doesn't always help... OTOH...Scott...maybe you are a little naive in some ways about researching alt treatments... I've been harmed by them in spite of research, at times. Salt/c is one. Homeopathy--sarcodes--at very high doses--another (temporary--salt/c in turn was very long lasting, a real serious setback). I couldn't have found the right research on the homeopathy.
It seems like sometimes afterwards I luck out through my connections to get some insight. With the homeopathic sarcodes--at such "high" doses, I was put in touch with an expert M.D. who also practices homeopathy, through a connection of mine. Because he knew my work he spoke with me for free over the phone, and explained what had happened to me.
He was the only person I've spoken with who even knew about these sarcodes.
I entered the situation believing they were just water anyway. Now I understand that homeopathy is real, so, I'm going to a homeopath in January--one whose Dad was very famous as a Jungian and homeopath and had a journal issue dedicated to him after his death. Truthfinder is the one who mentioned this guy's name. He's also an M.D....do I trust him with my health? How can I know?
I can only give my best guess.
This lady gave her best guess. She was ill, she wanted to be well.
Not everybody is a born researcher and even those who are, can miss the boat.
I don't know why the doctor was offering this treatment.
This proves to me that tickborne diseases are really epidemic and undertreated. We *need* *better* *treatment* *options*.
I can't tolerate regular drugs. I am about to get my Detoxigenomics test (expensive). I really want to know my p-450 genetics.
Posts: 2276 | From united states | Registered: Jun 2004
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This like any other treatment should be researched, and then researched some more. Talk to the people on this site and others and ASK questions. THEN, talk to your LLMD.
Then and only then should you make a decision based on what your body responds or reacts to. My Daughter has Lyme and hasn't really responded to anything we have done thus far. We keep trying and trudging along and hope that something will work for her.
She has been bed ridden for a time now, but is up on her own feet now instead of having to use a walker. My advice to anyone that is searching for relief from this life stealing disease, just keep on trying and NEVER give up. What works for one person doesn't always work for another.
Hugs Cathy
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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It was an experimental treatment that went wrong.
How many thousands of people died from aspirin? Yet aspirin is still available without script.
Bismuth has some potential in Lyme treatment. It would be nice if somebody would research it better.
But we know, that there is no money for Lyme research.
In spite of negative Lyme tests doctor's diagnosis could be right.
Posts: 54 | From Canada | Registered: Feb 2007
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SForsgren
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quote:Originally posted by oxygenbabe: OTOH...Scott...maybe you are a little naive in some ways about researching alt treatments...
I don't think that I am naive about alternative treatments at all. I have been to some of the best doctors using alternative and integrative therapies and have done countless hours of research on numerous alternative therapies.
There are certainly things out there I have not tried or have been very cautious about and taking a wait and see approach before trying some of them myself.
Salt/C was one that I proceeded with caution under the care of a doctor and did later decide to stop as there were indications that it was causing high blood pressure.
On the other hand, how many times do we hear of antibiotics causing elevated liver enzymes? We still take them. I support taking them, but we don't throw the baby out with the bath water on that side of the house so I contend that doing so on the alternative side of the house is equally inappropriate.
Everything has risks. Everything requires research. Just because a doctor says to take a specific antibiotic doesn't mean it is perfectly safe or without long-term consequences. I have known several people that had long-term problems after taking Levaquin for example.
Everything has a potential benefit and potential cost and it is up to each of us to do our homework working with our practitioners to determine the correct path.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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djf2005
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i agree w u scott.
oxy, u also made some very good points about a few recent incidents and threads.
although, arent we all missing the point, and that is THE therapies themselves and getting well?
be well...
humbly,
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
welcome melanie to the board. i'm so very sorry for your families deep loss of your beloved mom! thanks for coming online to set the record 100% straght.
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Was this doc considered an "LLMD"? I have not heard anything about such a treatment; it does sound a bit risky-- there should perhaps have been more prliminary testing and better monitoring. But alot of this is DEFINITELY an inevitable result of the kind of persecution Lyme docs have going through, as well as the blackout of true information on Lyme etc, DaveS
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treepatrol
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As we all know here blood work isnt very good for finding lyme you can have lyme and not show it in your blood work and that can sadly be repeated over and over.
Iam sorry for the loss of your mother.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
oxygenbabe
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posted
Hi Scott, you have done a lot of research (and passed it along) but not everybody has the time, money & facility to do so and see top practitioners etc... I guess its best, I've concluded, to research everything thoroughly and even so, doctors won't always tell you and you can't always find out.
For instance--relatively "safe" alternative therapies used in hospitals and at major institutions, that I've done/do:
1) HBOT. Nobody except the doc in Great Barrington ever acknowledged, admitted, or researched the fact that oxygen under pressure oxidizes the lens and can cause permanent eye changes, esp in those over 40, including myopia, presybospia, and even increase in or triggering nuclear cataract over time (if you do lots of deep dives as lymies sometimes do).
She found two lines in a hyperbaric tome/classic text. She thought about and suggested myself and another woman close our eyes to minimize oxygen to the lens (the cornea will absorb it topically). The third women we dove with always lay on a cot in the chamber and fell asleep anyway, so her eyes were protected. Other clinic owners don't pay attention when I tell them.
2) IVIG. No doctor ever mentions that it increases blood viscosity in all patients, for about 3 weeks. This is why in higher doses there is the occasional thromboembolism (heart attack or stroke). Since lymies have hypercoag issues, and it is being studied increasingly in lyme (Dr David Younger at NYU for example) they should probably test for coag defects, and make sure the drip speed is VERY VERY slow (which I do).
Etc.
One of my worries about herbal combinations that help people is--how do they interact? It makes me hesitate and wish to do one or two herbs at a time rather than four, five or six as recommended in some protocols.
I only do alt. therapies so I'm not dissing them, but its very hard to research and even when you do, your practitioners often don't know the information or want to learn it--even good practitioners.
You were lucky with salt/c--high blood pressure warned you. Others had damage without warning.
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Truthfinder
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Melanie W-B, I am so sorry for your pain and the bitterness you clearly feel.
The horror of this story - which could more easily be a story of someone harmed by conventional medicine - has two distinct perspectives:
There is the devastation and pain evident in Beverly's family because they see this as a pointless loss of a loved one..... and who could possibly blame them?
There is the shock and dismay of those helped by the therapy who have now lost their beloved practitioner and also see this as a pointless loss.... and who could possibly blame them?
Until each of us experiences the other side of the equation, I'm not sure we can truly appreciate it. From what little the public knows about all of this, I hope they won't be too quick to judge either party involved.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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map1131
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Melanie, so sorry for the loss of your mother. With everything being done these days to help save life, it sucks when you think that someone could of saved your mother from such a young death.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Melanie, I am sorry for the loss of your mother Posts: 615 | From maryland | Registered: Oct 2007
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just don
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Locally here a guy was getting a new knee. He reacted to the anethesia and died. Does that mean NOBODY should get new knees any more??
Melanie W-B, My condolences and heart felt sympathy for the loss of your mother. PLEASE dont be REAL sure she didnt have it,,,testing is SOOOOOO bad and unreliable!!
Nothing in life is FAIR or without risk,,,NOTHING!!!even--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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oxygenbabe
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No, what it means is we all should have our P450 enzymes tested. There would be a dramatic reduction in drug side effects and deaths including from anesthesia. That should be given just like blood tests, but it's only done once in life. He could've lived, easily. That anesthestic used a pathway in his liver that he couldn't detox easily enough. Others don't. My mother gets heart fibrillations from a certain class of anesthetic.
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Keebler
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Finally - talk about the porphyrias and the cytochrome P-450 pathway and how certain "normal" drugs that can kill if that pathway is not working right.
More study on the effects of excess porphyrins could save thousands of lives a year - and reduce much chronic suffering, I think, too.
Below is from a link I posted previously - so if some of it is out of context, I missed it in editing.
Toxin-binders may be helpful - with adequate water intake, of course.
Beta Carotene and glucose are two of the main treatments.
There is medical research that schizandra berry which, in tests, improved C- P450 enzymes (See Tillotson, One Earth Herbal Sourcebook). But, just as milk thistle, which also helps this, check on timing so as not to flush out meds too fast. A doctor to guide you is important. Any help in healing the liver is good.
If this is secondary, rather than genetic, it may ease after infections are over, etc. if the liver is in good shape. Infections must be treated ASAP and thoroughly, however.
Some folks may be sensitive to lights or to the sun ( vision or skin). Not always, though.
Some trace most patients with a porphyria to ancestors from Northern Europe, Ireland or Africa - but that is not certain.
People who are chemically sensitive, sensitive to alcohol or had unusual effects from even small amounts of medicines that could point to excess porphyrins. Trouble digesting meats, too, may be an indication.
This happens when the liver does not make enough of the very specific enzymes to help detox endotoxins from the body.
The tests are done on blood, urine and stool samples and must be done in a specific manner (i.e. covering the blood vials with foil as they are drawn to block out light).
There are many kinds (at least 11) of porphyria.
Treatment can involve beta carotene, IV solution of heme or glucose, or oral sugar (not fruit . . . it has to be sugar if it's an emergency - and that's not great if candida is present but it can save a life if porphyria is present - seriously.).
Not all doctors know about porphyria and the labs may need to be shipped to a special lab.
Now, if this is the case, knowing which meds the liver can tolerate can make a big difference.
Artemesinin does use the cytochrome P-450 pathway.
However, I deal with porphryia and I do fine taking it - but how would I really know as I still have seizures and major neuro/audio stuff. That could be the lyme/TBI or porphyria. It is hard to sort out. I have no other choice as it's all I can get for the babesia tx. So, I also take beta carotene and if I feel in trouble, some very dark chocolate that has low sugar but enough to pull me up. I also take anti-yeast measures with probiotics and allicin. ( http://tinyurl.com/2haxv9 garlic is UNLIKELY to alter C P-450 from just one abstract I can find.)
My porphyria specialist retired and there is no one in my city who understands this. I'm as much on my own now with this as with the lyme and two co-infections.
Tests are complex and can not always tell for sure. If someone has chronic porphryia (which can be secondary to lyme and CFS) the elevations may not be huge.
But if a porphyria attack were to hit then the levels might rise considerably and be very dangerous. You can't always test then. So many people go undiagnosed until an attack. The gallbladder may hold a key to testing, too, but that's not really being done yet.
Usually an attack would involve lower GI symptoms with alternating diahhrea and constipation or anxiety and disorientation (from the toxin build-up). Coma can be the result, too.
The C-P 450 pathway has other pathways within it but I am not educated in the finer points.
Everyone has porphyrins. However, in excess they can starve the red blood cells and do some major damage even death in reaction to any chemcal - or fasting - more information at the links:
MALARIA PROPHYLAXIS FOR PATIENTS WITH PORPHYRIA TRAVELLING IN SOUTHERN AFRICA
Excerpt: Artemisinin-lumefantrine (Coartem )
This is a potentially useful drug combination in the management of malaria. Unfortunately the safety of either component in porphyria is not yet established.
Both are metabolized by the cytochrome P450 system which implies that porphyria induction is a possibility. It should therefore be used with extreme caution only, and any experience with its use in porphyria should be reported to us.
Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia -
excerpts:
Features of Cpn and Cpn Infection
Secondary Porphyria. Depletion of host cell ATP by Chlamydia pneumoniae means that your cells don't have enough energy to complete their normal biochemical reactions.
One of these, the production of heme [the deep red iron containing component of hemoglobin], requires lots of ATP to come to completion.
ATP depletion results in incomplete heme production and a build up of the incomplete byproducts called porphyrins.
Porphyrins are neurotoxic and have numerous deleterious effects on the nervous system including anxiety, depression, bowel and digestive disturbance, and interference with sleep, rapid pulse, and even psychosis.
- Porphyria is notorious for causing chronic gut distress: nausea, intestinal cramping, etc. Chlamydia pneumoniae infection of gut endothelial tissue.
- Porphyrins block GABA receptors, a main cause of anxiety and agitation in porphyria, and likely to interfere with sleep.
- Porphyrins- noted previously for causing anxiety, depression, even psychosis.
- Secondary porphyria induced by it and the impact of porphyrins on brain functioning.
- Porphyrins blocking GABA receptors will also lower pain tolerance.
PubMed search for "porphyria" - 8537 abstracts you can narrow the search, such as "porphyria, fatalities" - 3 abstracts
Searching "drug name, Cytochrome P-450" or various combinations of that might also help.
=====================================
The doctor who dx me felt that everyone with chemical senstivity had a chronic porphyria. But many doctors did not agree that elevated levels (not in the acute attack range) could produce symptoms such as fatigue and brain fog from excess toxins.
So, porphyria can be genetic, acquired from mold or chemical exposure, drug damage to the liver, or from infection.
Dietary measures, beta carotene, heme, glucose and avoidance are the main treatments, but the web sites are the best sources. they also have lists of the drugs that use the C P-450 pathway and should be avoided by patients with any type of porphyria.
Sorry this is not very concise - it's hard to really pull this together. Hope it helps - just in case.
Excess porphyrins can cause a change in the color or urine. Sometimes this is the only clue. But there may be excess porphyrins - or lack of the specific enzymes - from blood or stool, so urine is not enough to text and it's not always colored in all cases of porphyria.
If anyone has family members who have experienced serious reactions to medications (which are C P-450 drugs), it might be life-saving to have all blood relatives tested. This requires more than a simple urine sample in the doctor's office. Consult sites above for specific details.
===
[ 26. November 2007, 04:49 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I wonder why this guy admitted manslaughter.
He probably felt terrible with death of his patient, even depressed so he signed anything they gave him to sign.
Did he have a proper legal representation?
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
it was either manslaughter or the initial charge of 2nd degree murder..he took manslaughter since it was the lesser charge and it meant no trial, he could work out a plea bargain with it
and yeah, he had a lawyer
Posts: 3 | From Olathe, KS | Registered: Nov 2007
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I don't know why Toth used this except he probably read about it in Townsend newsletter or reports from the Bradford Institute.
It's pretty scary because it's obvious he didn't really know what he was doing and didn't take proper precautions. OTOH, it looks like Melanie's mother was seeing him for four years, and the other patient for 11 years. If they felt helped by him with other treatments it's pretty clear that after those many years, they may have trusted him. It's a little different psychologically than going to a new doctor. It actually renders you more vulnerable because you trust the relationship.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
The failure of the medical system here puts Lyme patients at risk-- If indeed this was a case of negligence. Incidents like this are a direct result of the persecution of LLMDs by the 'insurance' ...'industry'... and their government cronies. This persecution turns all regulation into a joke; even that which we do need. Perhaps one a. steere should be prosecuted here, as being totally complicit. Its a clear case of cause and effect, irrespective of whether there actually was negligence happening in this case. It is so tragic, the state of affairs here! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
From the article posted above:
The petition states the doctor inappropriately diagnosed the patients with Lyme disease;...; failed to use a scientific method and evidence-based approach; failed to adequately document in his office medical records...; and failed to indicate and receive appropriate informed consent for the treatments provided.
These initial charges are almost identical to another set of charges against one of our better known LLMDs.
I am NOT comparing physicians by any means, only the similarity of the wording.
Posts: 7052 | From Colorado | Registered: Mar 2003
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
That's why I like to send patients to Dr. L. He not only gets extensive testing he does Spect & other scans, he documents it in various ways. It is really important to do that. He seems to prefer orals whenever possible, and I respect that too. For instance a young woman I sent to him lives here in NY but grew up in California so he tested her for wa1 (babesia strain in california). Smart. (Was positive as well as lyme).
Posts: 2276 | From united states | Registered: Jun 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Here is the source of the Bismacine treatment:
2004 Dr. Robert Bradford, through the Bradford Research Institute (BRI), an independent research entity, funded by American Biologics, is the developer of Bismacine,TM a chemical compound of bismuth. This formulation has shown to be effective at the Ingles Hospital against the spirochete and cyst forms of the Lyme organism. � 2004 BRI
It was one of the treatments covered in a long article in the Townsend Newseltter in 2006
He goes into a bit of detail on treating patients with this compound and says it is very effective. I suspect Toth simply took his word for it.
Posts: 2276 | From united states | Registered: Jun 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Cave, I have a woo-woo side, and sometimes journal with my "deeper" self (if I always did this, I wouldn't mess up and do the occasional idiotic thing like salt/c). One night I was asking my all-knowing non-local omniscient self (you may think it's imaginary, but it's as old as the 2000 year old man ha ha) what can kill borrelia in all forms?
And I end up writing immediately, "carbolic acid." So I look that up, yeah, that's lye, great. Sure, it'll kill borrelia. So then I write, "Okay, what will kill borrelia in all forms without harming the human host?" And then I write, "It hasn't been invented yet." Oh well.
Point being, bismuth may kill borrelia but kill the person as well. I don't understand some of these treatment ideas.
Posts: 2276 | From united states | Registered: Jun 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I'll buy that oxygen. So until they do, I'm of the opinion since I've been dealing with all this stuff for 7+ yrs and been there done that....
I will do just about anything, within reason, with lots of research, and keep searching to the ends of the earth to find that which cures me.
It's one step at a time.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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