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Is there a list of known treatment scams that don't work?

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Posted 12/2/2018 6:50 AM (GMT 0)
Hey I was just wondering.

With so much information for Lyme Disease patients on different treatments, there are bound to be some scams that just don't work at all.

Is there a list anywhere of treatments known to be hoaxes / scams?

Sometimes I wonder about Ozone IV therapy for example. I don't think I would necessarily call it a scam as I've heard many people claim that it helps them. But I really sometimes wonder about how profitable it is for the center that administers them. I noticed that when given an IV of DMSO for example, at a low dose it cost only about $50, and at a high dose cost about $150. Then I noticed with Ozone it costs about $200 for a low dose and up to around $500 for a high dose. What makes me question it is this. To my knowledge the actual cost of Ozone is free once they buy the machine, unless it has super high servicing costs or a supply I am unaware of. I wonder this because I have an air purifier ozone machine at home. And I don't need to supply it with anything other than electricity. So I wonder if the markup is just pure profit as opposed to actual cost of the IV. And if it really doesn't cost more, why are they charging so high for a supply that is essentially free to super sick Lyme Disease patients who are going broke treating this?

Ozone might not really fall into a scam list, but I feel like it might fall into a "non cost-effective list" that might be valuable to new Lyme Disease patients. I think I have more of a negative impression of it because my first LLMD had me use it, but made it sound like I would only need it for a week. Then it goes another week. And another month. And she keeps thinking I'll beat this in another month or two. Now it's about 2 years later after this and that Ozone treatment was by far the most expensive and produced the least results for me. And I really wish I had known this was not a 1-2 month battle and that I would need savings to pay out of pocket for treatment for years after.
Posted 12/2/2018 8:19 AM (GMT 0)
https://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html

I have been looking into this after reading about some of the treatments for lyme out there, often given by people who aren't medical doctors and I found this page. I read about people who were harmed and one who was nearly killed by months of antibiotic and other treatments sometimes given in iv or pic which is very dangerous. I’m still trying to figure out if and how to treat the tbd I tested positive for which is Erlichia Chaffeensis. I’m waiting for an appointment with an ids near me. I had one scheduled by citimd but I could not go and I read all terrible reviews of the doctor as well. I wont be going to an LLMD due to what I’ve read so far. I may end up just going to my GP who I never go to anymore.

Post Edited (meowee) : 12/2/2018 1:22:38 AM (GMT-7)

Posted 12/2/2018 9:11 AM (GMT 0)

meowee said...
https://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html

I have been looking into this after reading about some of the treatments for lyme out there, often given by people who aren't medical doctors and I found this page. I read about people who were harmed and one who was nearly killed by months of antibiotic and other treatments sometimes given in iv or pic which is very dangerous. I’m still trying to figure out if and how to treat the tbd I tested positive for which is Erlichia Chaffeensis. I’m waiting for an appointment with an ids near me. I had one scheduled by citimd but I could not go and I read all terrible reviews of the doctor as well. I wont be going to an LLMD due to what I’ve read so far. I may end up just going to my GP who I never go to anymore.

Just to clarify - Sometimes IV abx are the best way to treat certain cases of Lyme and co’s.
They are not “very dangerous” - yes there are risks but are sometimes recommended.

Unless the ID Dr is Lyme literate - it’s doubtful you will get the help you need.

Same for your GP.
Posted 12/2/2018 9:39 AM (GMT 0)
Picc lines are very dangerous, you can die from infection if not from the prolly unneeded iv treatments. When I was in dka in icu they wanted to put a picc line in because my one of my two iv lines were having trouble and they couldn’t get another good site, they ended up causing a blood clot in my arm trying to. I refused the picc line and that was one reason why I survived all of the mistakes made.

No way I would even consider in this situation. There is just so much that is very concerning to say the least from what I have already read in a short time so I would never see an LLMD and never take antibitoics or anything else to treat this for months or years. Fortunately my body can’t tolerate that anyway and I have the good sense to know what is best for me.
Posted 12/2/2018 10:00 AM (GMT 0)

meowee said...
Picc lines are very dangerous, you can die from infection if not from the prolly unneeded iv treatments. When I was in dka in icu they wanted to put a picc line in because my one of my two iv lines were having trouble and they couldn’t get another good site, they ended up causing a blood clot in my arm trying to. I refused the picc line and that was one reason why I survived all of the mistakes made.

No way I would even consider in this situation. There is just so much that is very concerning to say the least from what I have already read in a short time so I would never see an LLMD and never take antibitoics or anything else to treat this for months or years. Fortunately my body can’t tolerate that anyway and I have the good sense to know what is best for me.

A LLMD will sometimes recommend a Picc line or Port for IV abx. Sometimes it’s because of stomach issues and the patient can’t take oral abx and other times it’s because of severity of the infection. (For instance if someone has an ALS diagnosis IV abx are often recommended.)
They do have risks.. but are not “very dangerous”.

That’s fine if you never want to do IV abx (or orals) - it’s your perogative - but for some people it may be their choice...

We’ve had many members here do IV abx without any serious “events”
happening.
Posted 12/2/2018 1:19 PM (GMT 0)

meowee said...
https://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html.

I would always encourage one to be skeptical, but also get as much info from as many reputable sources as you can. A lot of the info on this website was challenged in empirical research. Dor example, this site mentions nothing about co-infections that complicate testing and treatment.

It takes a lot of work to realize what works and what doesnt, and sometimes it is very individualized. Keep doing research and sharing it here! We are in this together, even if we dont all agree with the best plan or treatment.
Posted 12/2/2018 2:10 PM (GMT 0)
DMSO is virtually free surprising they charge that much more for a higher dosage. Personally I think Ozone IV can help some folks but the cost versus benefit seems way out of whack.

The most reliable and agreed upon treatment within the LLMD MD community seems to be multi-antibiotics, usually long term if necessary (which it is for most). No one does this modality lightly but it appears to be the most effective one amongst a sea of inconsistency.

Everyone is responsible for researching and deciding on their own path there isn't one solution that works for everyone.
Posted 12/2/2018 8:27 PM (GMT 0)
meowee - I understand your initial impression of LLMDs. I think you may be throwing out the baby with the bathwater on them though. I've found LLMDs there are not good LLMDs and there are fantastic LLMDs. I think the same is true of regular non-LLMD doctors. But the knowledge and clinical experience of treating late stage complex TBD is all with LLMDs.

While I agree picc lines can be dangerous, I think this is one of those overblown fears created by propaganda "quack watch" type of sites. They will pick like 3 examples of issues that ever happened in Lyme treatment and make it sound like it happens all the time. While there is definitely a higher risk with a picc line, the risk of Lyme Disease getting to more advanced stages I think is a much worse and more certain risk. I don't advocate them being used frequently. And both my LLMDs advised me not to have them.

I don't trust these quackwatch websites, as I've found that often they are propaganda websites that discredit doctors for going against the mainstream even when the mainstream is clearly wrong. And I've dug deep into the evidence and studies and I know for sure that the "Easy to diagnose, Easy to treat" slogan of IDSA and CDC is just plain wrong. The studies that they use to back it up are minimal and full of poor assumptions, and poor methodology. And the studies that prove the persistence of Lyme bacteria are plentiful.

To me this is why it is such a challenge for Lyme patients to get a legitimate list of which treatments are total garbage. There are propaganda websites often funded by either IDSA, Pharmaceutical Lobbyists, Health Insurance Lobbyists, etc that have a goal of marginalizing opinions that don't align with their interests. Sometimes they are not funded by the above but trust recommendations / interpretations made by people funded by those groups, and believe them and don't have the time to dig into source materials themselves.

This quackwatch site you linked to for example, doesn't question the accuracy of the 2 tiered test. Honestly if you look at the 2 studies the CDC sites as references when they announced the 2 tiered test it is super easy to see how conclusions were jumped to without good data to support them. So sites like quackwatch tend to nitpick any issues with non mainstream studies, but blindly trust mainstream studies. According to sites like that there is no treatment at all and maybe this is all in my head.

I'm really interested in a non-biased list. Where there is acknowledgement that no there is no perfect treatment for late stage Lyme Disease that is double blind placebo controlled, but maybe lists out the various treatment options ordered by the level of evidence of effectiveness and with links to the studies. Here is an example of what I think looks like an unbiased analysis of colloidal silver. https://blog.bulletproof.com/colloidal-silver-uses-benefits/. They mention the risks, the mainstream view that it isn't effective, and the lack of human studies, but also shows the in vitro studies that show the potential. I personally am not super tempted to use it as it doesn't seem very well studied, but if I exhausted all other higher evidence options and this is all that's left I would try it.
Posted 12/2/2018 10:21 PM (GMT 0)

meowee said...
Picc lines are very dangerous, you can die from infection if not from the prolly unneeded iv treatments. When I was in dka in icu they wanted to put a picc line in because my one of my two iv lines were having trouble and they couldn’t get another good site, they ended up causing a blood clot in my arm trying to. I refused the picc line and that was one reason why I survived all of the mistakes made.

No way I would even consider in this situation. There is just so much that is very concerning to say the least from what I have already read in a short time so I would never see an LLMD and never take antibitoics or anything else to treat this for months or years. Fortunately my body can’t tolerate that anyway and I have the good sense to know what is best for me.

I had a PICC line for 6 months for multiple IV abx. I had NO issues in 6 months. I went running with it in, cycling, downhill skiing, hiking, light weight training, went into the sauna, showered (with it covered), and I even fell into a creek with it while I was fishing. You just have to monitor the site, change the bandage and clean it well once per week. I just had my mom clean it as she is a retired RN, rather than a specific IV nurse. The dangers of PICC lines exist, but they are grossly overblown. If your LLMD suggests a PICC line, I suggest that you follow their advice. They are easier on the gut microbiome, but they do have their downsides.
Posted 12/2/2018 10:52 PM (GMT 0)
meowee,

A few comments on your post:

1). When I first started learning about Lyme, I had pretty much the same repulsive reaction to the idea of long term multiple abx. It completely goes against everything I grew up believing about abx.

I did try them very briefly but was told by my doctor to stop when symptoms started worsening (herx). After stopping, my symptoms became disablingly worse for 4 months. At that point, I opted to do Buhner’s herbal protocols on my own, since my body could not handle the toxic die off from abx. With herbs, I control what and how much I take.

2). While a certain level of scepticism is warranted, I have never read much of any useful info on sites like quackwatch. I agree 100% with what lymelearner said about quackwatch and similar sites. In my opinion, their goal isn’t really to “protect” you. Rather, it’s to discredit anyone who dares to go against the mainstream.

3). The reality is that much of what is or may be helpful to those with Lyme and chronic inflammation and immune dysfunction has not been adequately researched, tested, or approved by the “gods” of American health care.

Rather, it is learned by doctors who study and practice functional medicine that goes beyond the standard curriculum taught in med school. They have implemented certain supplements and detox methods, etc, in their clinical practice and have learned what their patients report to be helpful.

We do the same on this forum by sharing our personal experiences with others. The help we freely give each other is invaluable.

You will learn that no matter what type of treatment you do, it is essentially trial and error. Every person is unique in their genetic expression, mixture of pathogens, toxic load from multiple sources, personal beliefs, and physical and mental functionality.

4). Recommend you read Dr. William Rawls’ book, Unlocking Lyme. I think you will find it quite helpful.
Posted 12/2/2018 10:54 PM (GMT 0)
lymelearner,

Dr. William Rawls did do this sort of thing in his book, Unlocking Lyme. Do you have the book? If not, I recommend it.
Posted 12/2/2018 11:32 PM (GMT 0)
Some comments on Buhner protocol (it doesn't work):
https://www.healingwell.com/community/default.aspx?f=30&m=4086063

Some comments on stevia (it doesn't work):
https://www.healingwell.com/community/default.aspx?f=30&m=4062364
Posted 12/3/2018 12:02 AM (GMT 0)

WalkingbyFaith said...
lymelearner,

Dr. William Rawls did do this sort of thing in his book, Unlocking Lyme. Do you have the book? If not, I recommend it.

I haven't read it yet. I've recently come across his name. Adding this to my list.
Posted 12/3/2018 1:16 AM (GMT 0)

Quin said...
Some comments on Buhner protocol (it doesn't work):
https://www.healingwell.com/community/default.aspx?f=30&m=4086063

Some comments on stevia (it doesn't work):
https://www.healingwell.com/community/default.aspx?f=30&m=4062364

Quin,

I don’t know why you made the statement that Buhner protocol and stevia don’t work. They certainly have worked for some just like abx have worked for some. There is NO TREATMENT that works 100% of the time for 100% of the people.

I am one who posted on that Buhner thread. While my progress has been very slow and frought with ups and downs, there are others who responded very well to Buhner’s protocols. They don’t come on the forum much anymore..
Posted 12/3/2018 1:17 AM (GMT 0)

Quin said...
Some comments on Buhner protocol (it doesn't work):
https://www.healingwell.com/community/default.aspx?f=30&m=4086063

Some comments on stevia (it doesn't work):
https://www.healingwell.com/community/default.aspx?f=30&m=4062364

—————————-



Quin - that thread you linked to did show some people having results with Buhner herbs.

That is what Peteza and her husband used to heal.

And there were also some people saying that Stevia worked too
Posted 12/3/2018 1:22 AM (GMT 0)
I see WBF posted before me with pretty much the same thoughts.
Posted 12/3/2018 1:25 AM (GMT 0)

WalkingbyFaith said...
lymelearner,

Dr. William Rawls did do this sort of thing in his book, Unlocking Lyme. Do you have the book? If not, I recommend it.

What did dr Rawls do in his book?
Posted 12/3/2018 2:35 AM (GMT 0)

Girlie said...


What did dr Rawls do in his book?

He did a review of some of the other treatment modalities that people with Lyme have used. He explained what they basically involved, the scientific support or lack thereof, pros and cons, relative costs, etc. I thought he did a good job.
Posted 12/3/2018 2:41 AM (GMT 0)

WalkingbyFaith said...

Girlie said...


What did dr Rawls do in his book?

He did a review of some of the other treatment modalities that people with Lyme have used. He explained what they basically involved, the scientific support or lack thereof, pros and cons, relative costs, etc. I thought he did a good job.


———————————————


Oh I see. Do you remember any of
them - any that stood out - good or bad and would like to share?
Posted 12/3/2018 6:45 AM (GMT 0)
Sidetracking a bit I somehow accidentally googled my way into this:

https://www.lymedisease.org/wp-content/uploads/2018/05/Informed-consent-for-Lyme-treatment.pdf

I hope this informed consent actually becomes the new normal.
Something like that could both protect LLMD's and protect patients by making them aware there is no right answer and there is competing beliefs but that they can choose which option they want after having risk/reward presented to them.

And this section in there about the risks of PICC lines.

"There are additional risks associated with IV treatment. IV treatment usually involves the installation of
an intravenous line in my vein to allow easier IV treatment. PICC lines may result in local infection, or
if unchecked, systemic infection. If signs of skin inflammation occur, the line may need to be removed.
Rarely, PICC lines break off when they are being removed and may then require surgical removal.
There is also a chance that, upon insertion, a nerve near the vein could be damaged. There is a risk of
blood clots from PICC line insertion. If a clot forms, the PICC line may be removed and I may be
hospitalized for the initiation of anti-coagulation therapy. The risk of clot development is decreased,
although not eliminated, by flushing the PICC line twice daily with saline and heparin and by avoiding
vigorous repetitive motion activity of the arm in which the PICC line is placed. The overall risk of
significant adverse events for IV depends on the duration of treatment and is 1.8% per 1,000 days on an
IV."
Posted 12/3/2018 7:27 AM (GMT 0)

lymelearner said...


And this section in there about the risks of PICC lines.

"There are additional risks associated with IV treatment. IV treatment usually involves the installation of
an intravenous line in my vein to allow easier IV treatment. PICC lines may result in local infection, or
if unchecked, systemic infection. If signs of skin inflammation occur, the line may need to be removed.
Rarely, PICC lines break off when they are being removed and may then require surgical removal.
There is also a chance that, upon insertion, a nerve near the vein could be damaged. There is a risk of
blood clots from PICC line insertion. If a clot forms, the PICC line may be removed and I may be
hospitalized for the initiation of anti-coagulation therapy. The risk of clot development is decreased,
although not eliminated, by flushing the PICC line twice daily with saline and heparin and by avoiding
vigorous repetitive motion activity of the arm in which the PICC line is placed. The overall risk of
significant adverse events for IV depends on the duration of treatment and is 1.8% per 1,000 days on an IV."

If I’m understanding - 1,000 days (2.7 years) on an IV and just under 2 persons out of 100 have significant adverse events.

That’s not so bad - considering that most Lyme patients on IV abx generally arent on them more than 6-9 months. And that would reduce the risk even more.
Posted 12/3/2018 12:33 PM (GMT 0)
FYI quackwatch is run by a shrink who has been sued several times. Its not a legit site in my opinion
Posted 12/3/2018 10:10 PM (GMT 0)

WalkingbyFaith said...
I don’t know why you made the statement that Buhner protocol and stevia don’t work.

Because I tried stevia and it didn't work, and a lot of other people say it doesn't work.

Girlie said...
Quin - that thread you linked to did show some people having results with Buhner herbs.

Yeah, and many who said it didn't work.

I'm rather skeptical of the idea that you can treat Lyme disease by boosting your immune system, as Buhner claims to do. When I got Lyme disease, I initially got a very strong immune response to it, which kept the infection under control for years. The problem is, it did not get rid of the infection, and it made my immune system hyper-responsive to everything. The first symptoms that I noticed was I was getting allergies. Suddenly I was getting bad reactions to pollen and other things that never bothered me before. I'm on antibiotics now, the bacteria are dying, and the allergies are gone.

Even if Buhner's protocol does what he claims, it's not going to work.


Then there is just plain unbelieveable stuff like this

https://www.healingwell.com/community/default.aspx?f=30&m=4083478

That post advocates buying a book, and some vague remedies that cost $110 per month. I spent less than that buying antibiotics from InhousePharmacy.

I am very skeptical of much of what is posted on this forum, and people seem to be spending a lot of money on some very questionable things.
Posted 12/3/2018 10:13 PM (GMT 0)
Quin - that’s like saying “Rifampin doesn’t work” because some people didn’t get results.

The OP posted about scams.
Posted 12/3/2018 10:26 PM (GMT 0)
Rifampin was one of the first antibiotics that I took. After about 6 months, I hadn't gotten significantly better, so I switched to a different combination of antibiotics. Also rifampin stained my teeth, and this has not gone away. I certainly wouldn't recommend rifampin.
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