Topic: How Did You Decide For/Against an Experimental Treatment (I Can't Do ABX Anymore)
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Note: Please do not make this into an argument about antibiotics versus alternative treatment. I am looking to an alternative treatment because I have tried antibiotics and they haven't worked for me. I do not want to discuss the treatment, I just want to get input on how people decide for or against an experimental treatment.
For those who have used experimental treatments, how did you decide to move forward with it? Or how did you decide against an experimental treatment?
I appear to have hit the end of the antibiotic road. I had been on orals for over 2 years. Most improvement I experienced on orals has disappeared over the last few months. My LLMD doesn't think I can tolerate IV antibiotics because of pancreatitis and possible liver problems.
So I'm thinking of trying sulfoxime and dioxychlor, which appears to be very experimental at this point. But my LLMD is having good experience with it, and it is supposed to work faster than other herbal protocols.
My LLMD is a firm believer in antibiotics. In the past, my LLMD would never consider treating Lyme with anything besides antibiotics. But my LLMD now thinks that this might be a good route for me.
Thank you in advance for being polite and intelligent, like I know you all are.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
Before you quit abx have you tried oral bactrim? It was like a miracle drug for some of us.
just an idea.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hon, i sure wish i could help you.
i tried the herbal route, buhner, and it didn't do anything for me. course i didn't get to full dosage so i cannot blame the protocol at all. it was me...
i had also done 2 years of antibiotics but couldn't find a doctor willing to prescribe more. unfortunately, they did not give me any diflucan or flagyl with the antibiotics.
so when i tried an all in one capsule that i ordered from the internet, it really tore things up.
jimbob and others are right. you do not know what's in some of this stuff and you have to be super careful. they know their stuff, listen to them.
i ended up in the er with a very, very bad case of antibiotic induced colitis or c. difficile stuff. it took a colonscopy, flagyl, restricted diet, and now prevacid to get things straightened out.
so, bottom line, listen to the people here and you'll get some real good advice. don't be like me.....
i'm an example all right, a bad one....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I keep coming across this Canadian Warning, which makes me think . They state the problem with Bismacine, but I don't see why they include Dioxychlor & Sulfoxime in their warning. I'm still trying to see if I can find a reason they're mentioned there.
Health Canada warns consumers not to use unauthorized intravenous health products due to potential health risks
OTTAWA - Health Canada is warning consumers and health practitioners not to use the unauthorized intravenous products Bismacine (also known as Chromacine), Dioxychlor (also known as DC-3) and Sulfoxime because they may pose a serious risk to health.
These products have been promoted as an intravenous protocol to treat Lyme disease, a tick-bourne illness.
Additionally, Dioxychlor and Sulfoxime injections have been promoted for the treatment of other health conditions. Together, Sulfoxime and Dioxychlor are promoted as anti-microbial agents.
Bismacine is not an authorized health product in Canada; however, it has been available for sale from compounding pharmacies in the United States.
Bismacine contains high amounts of bismuth, a heavy metal that is authorized for use in some oral medications to treat Helicobacter pylori, a bacterium that can cause stomach ulcers.
However, using bismuth through injection may result in cardiovascular collapse, kidney failure or death.
There is evidence that Dioxychlor and Sulfoxime, although not authorized by Health Canada, have been purchased by Canadians, in Ontario, Quebec and Nova Scotia, from a U.S. Internet pharmacy.
Bismacine, Dioxychlor or Sulfoxime injections are not recognized naturopathic practices in Canada and they are not used by licensed naturopathic doctors in Canada for the treatment of Lyme disease or any other condition.
All three products are manufactured by American Biologics of Chula Vista, California. The same manufacturer markets a device called the Bradford High Resolution Microscope as a tool to diagnose Lyme disease. This device has not been reviewed or approved by Health Canada.
Lyme disease occurs mainly during the summer. It is treated with antibiotics, either orally or intravenously, depending on the severity of the disease. Visit the It's Your Health fact sheet for more information on Lyme disease.
To date, no adverse reactions suspected to be associated with these products have been reported to Health Canada. However, there has been one death and several reports of injury related to treatment with Bismacine in the United States.
Health Canada is advising consumers and health practitioners not to use Bismacine, Dioxychlor or Sulfoxime for the treatment of any medical condition, including Lyme disease.
Individuals who believe they have suffered side-effects from using these products are advised to seek medical attention immediately.
Health Canada is also advising consumers and health practitioners not to use the Bradford High Resolution Microscope to diagnose any medical condition.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I have never heard of these before. So, we are not talking an herbal protocol since you use the word experimental - can you explain more background about both.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Ali,
As far as I can determine, sulfoxime and dioxychlor are included in that warning because they come from the same manufacturer.
I've studied FDA law, and the same type of warning could be issued in the U.S. by the FDA just because a product is not FDA approved. It does not mean the product is not safe. (Not considering Biscamine, which did have the adverse reaction).
I'm not going to use the treatments if the doctor who came up with the treatment cannot produce some type of evidence of safety. Considering I've been on two drugs that were later found out to be dangerous, Vioxx and Ketek, I don't have complete trust in the drug approval system.
But I want to know that there has been some testing, or at least tracking of a large number of patients who have received the treatments for adverse reactions.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Valymemom -
These are intravenous treatments. Sulfoxime is an antifungal which may also have antibacterial properties and may kill Lyme. Dioxychlor is a broad spectrum antimicrobial.
I do not know yet what they are exactly. I'm hoping to get more information when I talk to the doctor who is marketing them. It is not Cowden or Buhner. I posted a question once on this board, and very few people responded.
I don't want to encourage anybody to use them, because I have so little information at this point. I'm just at the start of the investigation process.
What I'm looking for right now is how people made decisions to try, or not try, an experimental treatment. What kind of things people considered. How they weighed risks.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Here is a collection of lots of links on Chlorine Dioxide:
I'll try to search some scientific journal tomorrow if I can.
I hope maybe someone else can help you out with more specific info.
I know someone here who was unable to take ABX was benefitting from HBOT.
I'm sorry you're having a bad time with the ABX.
T hope things get better for you soon.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Sorry Aniek, I misunderstood. I thought you were looking for information on the specific experimental treatment.
I have nothing to offer as I'm still working the ABX route right now.
Maybe if you change the topic to "What factors do you weigh in deciding on an experimental treatment?" (Or something like that) Those that have faced that decision might chime in.
Just a thought......
Good luck getting some better answers.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Ali,
Your post is absolutely wonderful! Thank you so much for that information.
I made the disclaimer because I don't want people reading my post and then running to their doctor asking for the treatment. I know too little about it right now to give any advice on it, so I don't want anybody relying on me.
But I'm definitely still looking for any information on the treatment.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks.
I'll try to see if I can find more info tomorrow.
I just thought of another topic idea, that might make the point better.
"Can't take any more ABX - How to decide on an experimental treatment?"
Maybe you'll get a response from the person who tried HBOT on what factors weighed into that decision.
Hopefully I'll catch up with you in the am.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
posted
When I ran out of the antibiotic treatment.... after a few years, it made me sicker.... I went to SAMENTO, grapefruit seed extract, and artmesia.
I am well today... but each day may bring something else. Recently, I became ill in France with clearly a virus; because my immune system is compromised because of Lyme, it took 8 weeks to over come this virus.... Samento...
Posts: 121 | From Sarasota, FL | Registered: Oct 2000
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
My doctor gave me dioxychlor orally early in my treatment. I believe the normal course is to begin with 5 drops in water and build to 20.
My doctor started me at 1 drop and build to 5. He did this because, at the time, everything I did or even thought about doing caused me to herx.
I herxed on the dioxychlor but was able to stick it out. We only did it for 10 days.
It would cause head pressure more than anything else.
You can buy it this way right off the shelf. It was by American Biologics.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
not looking to start an argument with anyone, but is this like MMS??
posted
Luvs is right. Dioxychlor is available in some health food stores. Mostly used for candida problems as far as I know.
If this was me, I would approach this the same way hubby did with the colloidal silver. Try the oral route 1st. Build up the dose and then maybe proceed to the IV route.
Since this is an MD suggesting this product I would rely somewhat on his suggestions. Obviously there must be some annecdotal evidence to support the products.
Also if you do this in the docs office you would be supervised to hopefully make it safer.
The Townsend Letter published an article a couple of years ago including the Bismuth and I think both of the other products you mentioned. Not sure if it is online or was only in the actual magazine.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Heiwalove - I'm not starting this discussing to talk about the protocol. I want to know what factors people use to decide on an experimental protocol. Other people have asked about the protocol and I have responded.
Lymetoo - That's why I'm doing research to find out what kind of safety studies have done. If they can't provide me with proof of safety, I'm not trying it.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
How about trying HBOT? It is recommended by my llmd. I have not tried it only because of the expense and time factor. I hope to use it one day, hopefully in the next year.
On your question: I would decide on an experimental treatment on the basis of its safety record, and on the recommendation of my llmd.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
If i was going to expereiment it would be with herbs and I would study everything out there including the chemistry and cross reactions.
I am not willing just yet to give up on abx's myself. I think it is a matter of time and the right combo and making sure you go after everything that can come out of a ticks mouth. Including virus's and myco's yeasts,etc. Good luck on the switch I hope it helps. Iam on my 5th year of treatment starting number six.Infected and untreated since 1988 to 2003. Had all this company inside me a long time figure its gona take a while to get rid of them.
-------------------- 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.
posted
Aniek, I don't think there is a way to navigate this with comfort and assurance. But over the 4+ year course of treatment my daughter has taken, we have followed the advice of one particular doctor who is as personally invested in defeating this disease as one can possibly be. This doctor is obviously intelligent, research oriented, and was quick to recognize the limitations of abx therapy.
BUT STILL, we don't blindly follow! I think that is why most of us see more than one doctor. We usually run any new thing by each doctor before making a decision.
I don't know much about Quackwatch; but when I google any new drug/treatment, and it comes up, I read it and evaluate it along with everything else.
One more thing: I try weigh the risk-of-treatment factor against the risk-of-illness. For example, when my daughter developed a potentially life-threatening clotting issue, we did end up choosing lovenox over warfarin, against the advice of the hemotologist. I would not take that same risk with managing a chronicinfection that poses no immediate threat. I would exhaust all the safer alternatives before trying a risky experimental treatment. When there is time, I would selfishly let others be the guinea pigs!
I hope you find your way through this to a successful concusion! Keep us posted.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I have been researching & can't find anything on human use of chlorine dioxide in the scientific journals so far. The sulfoxime references seem to be for two different types, buthionine sulfoxime & L-methionine sulfoxime.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Aniek,
I have used plenty of treatments not considered mainstream, and have had to think long and hard about my choices.
I think the term experimental indicates that the product, or the delivery method has not been evaluated by research.
My first move is to do a really good search to find out if there is in fact any research on the product, and/or delivery method, even for other diseases.
I don't already have information on the products you mentioned, but it sounds like you are in hot pursuit!
I recognize that many people who have been diagnosed with other diseases actually have lyme, and results might apply to my situation.
I also look for lawsuits and adverse reactions. I recognize that these are not always based on truth or fact, but then again, neither is research. It's one way to look for the other side of the story.
Then I look for any other information on the product that is not associated with the manufacturer or marketer.
Then I look to see if there are different manufacturers, and which ones seem to be the safest and most reputable. I check if there are additives or other ingredients I was not aware of.
I ask lymenet if people have had experience with it.
Finally, if I decide it may be a good idea, I hold it in my hand and muscle test it. If it comes up positive, I take it to my kinesiologist (even if it's a pharmaceutical) to muscle test it for me, and see if we come up with the same answer.
Then I trust his answer because I have found out over the years that his answers are worth trusting.
When I take any new product, I usually don't take any thing else new at least two weeks before and after, so I can get a clear picture of the results.
This has been my full time job since last December, and it has worked. Good luck with your choice and outcome!
P.S. I am a firm believer in the necessity of systemic antifungal treatment for long-term antibiotic users. I don't care what you use, as long as it works.
Fungal infections can take hold in other parts of the body, even if your digestive system is kept fairly healthy by Probiotics.
If it gets into your endocrine system - pituitary, adrenals, etc, everything goes haywire.
Systemic fungal infections have symptoms similar to lyme.
P.P.S. For the record, anybody reading about Bismucine/Bismth, I'd stay away from it. Some people have had very bad reactions to it.
I'd shy away from ingesting metals, except under some specific circumstances and in very judicious miniscule quantities. They are hard to get back out.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
My personal opinion:
With the trouble I've had finding any supportive information (other than a blurb in The Townsend Letter)
The fact that the proponent of this therapy appears to be someone with only "honorary" doctorates from foreign countries operating out of a clinic in Tijuana, Mexico,
Someone who also promoted the use of Bismacine, which proved to be harmful
I think I'd be hesitant to trust judgement of risk/benefit
With the lack of any published scientific research on the safety/efficiency of the components individually
Being unable to find ANY information of the Sulfoxime
I would certainly question the integrity of my LLMD, when there are other options out there to try with some documented safety information
I think it's impossible to gage the risk factor with the information I've been able to obtain & that would make me very uncomfortable.
I might seek a consult with another LLMD for more options before trying this.
That's just my opinion.
Good luck with whatever alternative to ABX you decide to try.
My prayers are with you, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
I wouldn't trust Quackwatch at all. They think our LLMD's are quacks....if that tells you anything.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
OK Tutu,
I'd still be uneasy with it despite the quackwatch info. Too many dead ends and not enough info for me.
just my opinion - to each his own
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
posted
Ali...Don't worry about me! I'm definitely "NOT GOING THERE."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Ali,
Thanks for all the work you put in! I'm supposed to be getting a call from Dr. B at some point. I've actually heard encouraging things from somebody I know in alternative medicine about him.
But I'm obviously feeling sketchy about the therapy, or I would have started it already.
Take a break from research. I'll let you know if I find out any more information.
-A
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Oh Sheeesh Tutu! I know neither one of us would go THERE!
I had my head in the research, Heiwalove's question must have rolled right off me.
Actually Heiwa, they both use Chlorine Dioxide. The MMS seems to be a stronger dosage ingested and the Dioxychlor in this therapy is used IV. I can't figure out what the Sulfoxime is. I also can't find any research to the safety of taking either internally.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks Aniek,
I'd be REALLY curious to hear what you can find out.
I can't imagine that an LLMD would just get you into something like this without thorough research of his own. Maybe he has better resources than I do. I hope so.
Good luck getting more answers. Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Having had a good look around now, here's what I come up with.
It seems that sulfoxime is a systemic antifungal and antibacterial. I don't find any outcome studies, or even any anecdotal reports. This gives me the willies. It may be great, but I wouldn't want to find out it isn't the hard way.
There are other more highly researched and more widely used products for fungal treatment, such as Diflucan, Vfend, Garlic, Caprylic Acid, oregano oil, and Artemicin, and homeopathics.
Considering the lack of info on sulfoxime, I'd go with a good systemic antifungal regimen that is more well known.
As for antimicrobials, many people on lymenet have had success with Buhners herbs and with homeopathics. If you are going the alternative route, I'd try the better known protocols, rather than sulfoxime.
Dioxychlor is more along the lines of a oxidator. Some people really like the idea of ozone therapy and even IV hydrogen peroxide.
My ND is into the idea and tried to talk me in to it. Again, not enough info out there for me to IV this stuff straight into my blood. It may be great, but I don't want to be the one to find out it isn't the hard way.
I think oxidative therapy may be very helpful, but understanding how lyme lives and breeds, I don't believe it will kill lyme in the many places it hides.
Only my opinion:
It sounds like your LLMD is great with atibiotics, but grasping at straws with complementary medicine.
If you want to go the complementary or alternative route, I'd go to a specialist in this instead of being treated by someone without much experience.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
aniek-
im not sure i get your question, but i think i do....my decision on whether or not i will add or remove something from my protocol depends on how i feel. plain and simple. for the most part, most of the lyme therapy alternatives are not going to kill you. (right away at least)
anyway, if i am very ill, i might be more inclined to try newer or riskier things as to where i am right now (a constant state of healing and progression)so personally i would not. but, everyone is different.
here are some alternative therapies i have either tried or looked into-
ondamed LED massive doses of garlic (start graudually) FIR sauna sunlight RIFE
the above are all rather new (other than sunlight) and prove to be rather promising, especially ondamed. scott may be able to provide you with further information as he is well versed on lyme and possible treatments.
i would also reccomend rosner's new book, top 10 lyme treatments. it has a lot of good, reliable information in it. his book on rife is equally informative and well worth the read.
hope this helps you in some small way.
feel free to pm for any further assistance.
humbly,
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I think that anything i would consider expereimental i would avoid...
having said that besides abx i do use some herbs (its just that to me the things i use aren't experimental although if you are going to go by mainstream medical community guidelines i guess it would be)
Have you been treated for coinfections that could definetely hold back treatment
I think for me personally babs has been holding my progress back... which i am treating now besides rx I take artesimisinin but if your liver isnt up to it i dont know if it would be such a good idea.
what i try to determine is identify the issue (babs, lyme, yeast etc) try to see if i can find something that will work against the particular issue (even better if it will work against more than 1)
can i take it with the other stuff i am taking... list potential side effects ... and the benifits better far exceed the possible risks...
and modify things to try not to be too toxic(like i try not to take to many things known to be hard on the liver simeoltaneously)
And i dont start a whole bunch of things at once ...if i have a problem it will be a big hassle to figure out what.
And i am like lymetoo ..i wait and see .... lots of fads come and go it seems... i think having chronic lyme makes me enough of a guinea pig as it is...so i am not signing up to volunteer to discover side effects or the shortcomings or catatrophies of the next new thing.
oh and always trust my intuition... trusting it has saved me from misdiagnoses and unnecessarry procedures.
Good luck with whatever particular treatment route you decide to go.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
I don't know as I've ever really done an `experimental treatment'. Unless using homeopathy would be considered experimental, then I guess that's what I'm doing....
I had to choose a treatment that I was relatively certain my GI tract and gut flora could tolerate, and that eliminated many herbs and most abx and other orthodox meds...
.... and for that reason, I am always interested in any IV alternative treatments - bypassing the gut has a lot of appeal for me.
If you read much Quackwatch stuff, you'll probably never try anything alternative. Rumor has it that his website is sponsored by some interesting folks, like the AMA..... and by the way, Whatshisface - Barrett? - at Quackwatch has never won a lawsuit and he has been involved in about 30 of them.......
Anyhoot, like Luvs, I've taken Dioxychlor orally - many years ago when I first found out I had a very high EBV titer. It did help me, and I regained my energy faster than my PCP said I would.....
-------------------- 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
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I have used many unconventional treatment in the past three years and so has my wife. Experimental may not be the word I would use for most of them because most all have been proven to work to a degree either in principle or by a large group of users.
Most conventional medicine is not an option for either of us at this time.
I base most of these decisions on different criteria since you have to use what information you have to work with. Often imperfect or incomplete.
We used Samento and Cumanda early on because it appeared relatively safe and a trusted member of this forum vouched for its effectiveness. Since we knew very little about alternative treatments this was all new to us. We followed her advice and my wife improved quickly.
They both worked well for a time, but lost effectiveness and it was known that antibiotics push Lyme into the cyst form and it appeared to do just that.
Now we need a new method of attack that would not put Lyme into the defense mode. I heard about Rife frequency therapy and spent at least a couple of hundred hours looking into it. I needed to know if it was safe and if it had the potential to kill Lyme. I met several level headed people who had used it for Lyme and improved considerably. I also considered the fact that Royal Rife was a very brilliant man with several astounding accomplishments. Why would he work most of his life on a principle that did not work? The answer being unless he was crazy, he wouldn't.
So we used this method until very recently and it improved one aspect of my Crohn's disease but not the disease itself. My wife did much better and is normal most of the time, but the Lyme is not eliminated. Partly, I believe because it is a contact machine, and partly because the cyst form is not as easily killed by frequencies. Also, because who knows what coinfections are involved at the same time?
Same problem with me and my Crohn's. It is likely that my Crohn's is a problem because my immune system does not kill harmful bacteria or fungus in my intestinal tract. Now, how the heck can I locate a unknown specific bacteria or fungus in the first place and even if I could, how would I kill it completely?
And how can I kill all the Lyme in my wife and coinfections along with the cyst form? I needed a shotgun approach. Kill all pathogens at the same time. I was not optimistic at the odds of finding anything that could live up to that demand.
This led me to investigate MMS. It kills pathogens by stealing electrons from acidic bacteria. I do not see how any pathogen can have a defense mechanism against this kind of mechanism. They have to have electrons and they have no choice but to give them up to an oxidizer of this type. This is where we are at now. So far, we are impressed with its effect. Much more to learn though.
I think of this approach as more logical than relying on a belief system in any particular method of healing. I am a practical person and I look for practical answers. If I am trying to accomplish something, I look for the most logical solution. Strictly following a doctor or anyone else's solution limits your options to what they know, have available, and whatever biases they may have.
How many hardliners are here that only use conventional or only use alternative treatments and scoff at the rest? I do not care to put artificial limits on what we use.
I really do not give hoot if it is either, only if it is likely to work, and safe as measured by a large intelligent group of users or by scientific study, or by chemistry. I do not care what type of proof it is, only if it is credible in my estimation.
I attach no importance to what an uninformed opinion on a treatment is. I only care if it is likely to accomplish what I want. Opinions are wrong as often as they are right. No point in even listening to an opinion without some kind of reasoning behind it.
I am not specifically recommending any of the treatments I have used. Your situation may call for different methods. I only mentioned them in an attempt to explain how I decided what my family has used and why.
I never stick with something that is not working. Insanity is doing the same thing over and over again and expecting a different result.
I hope you can find your own path to a better result.
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
ALthough I understand the original question the realization of socialization is obvious in the responses.
I certainly don't have the answer but what I do know is that ABX, Herbs, and other alternative appraoches in killing Lyme are all complex.
What is dangerous and what is not is a difficult question to answer.
I do beleive we have been socialized in thinking that what is FDA approved implies it is healthier, safer for us.
I don't hold much faith in what is FDA approved and what is not.
Artificial sweetners, food coloring, etc, etc, etc., are all FDA approved.
It is too bad we don't have a regulatory, non governement agency that will tell us the truth. Something where the $ is not the motivator.
Do tons of research, connect with those that have tried it, pray about it and then go for it.
Who knows, maybbe the only safe way to treat Lyme is avoid sugar and rife, but then maybe rife will kill us somehow also.
Good Luck Peace, BJG
Posts: 468 | From IL | Registered: Oct 2003
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I want to thank everybody for such thoughtful advice. I decided there just is not enough information out on the protocol I was considering.
I will probably be trying the Cowden protocol. It will be a longer road than the other protocol, but I know that there has been safety research and I've used Cumanda to control yeast with great success.
I have not been treated for babesia, one reason being my LLMD doesn't think I can handle it.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Eek!]](eek.gif)
. They state the problem with Bismacine, but I don't see why they include Dioxychlor & Sulfoxime in their warning. I'm still trying to see if I can find a reason they're mentioned there.![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)
![[hi]](graemlins/hi.gif)
![[Big Grin]](biggrin.gif)
![[sleepy]](graemlins/sleepy.gif)
![[kiss]](graemlins/kissing.gif)
![[lol]](graemlins/lol.gif)
Printer-friendly view of this topic