I was about to shut of my computer. Then I remembered something else Dr. Kilani said. (You have to read the blog before this one first). "Everyone has a 41 band." "Its due to a dental spirochete." It is interesting, because he said he can also find a 39 band on most samples. There is much agreement that the 39 band is highly specific for Bb infection. He doesn't present interpretive results like IgeneX; he leaves this up to each physician, based on the model they employ. Can we settle this point? Can the dental spirochete(s) be isolated and injected into an animal model or human blood? Will the antibodies produced by such an infection produce a cross reacting Lyme 41 band? Or maybe there is a better way to do this research. He is the scientist. I am just a country doctor. If the results fall the way I suspect it would have a chilling affect on Lyme WB testing. If his assay for the 39Kd band is more sensitive.....
He told me about an individual whose Lyme WB bands all light up, and is in perfect health.
Perhaps everything will ultimately boil down to clinical diagnosis with less and less of a role for laboratory corroboration. (If most people have been exposed, egads). A radical idea. I know.
43 comments:
I just found your blog. I am the author of 4 Lyme disease books - www.lymebook.com has them - would you be interested in reviewing one or more of my books on your blog if I sent you free copy(ies)?
Bryan Rosner
theskyking -at- aol.com
(530) 541-7200
I just read some more on your blog and see you have already mentioned my book, so I guess you've already "reviewed" it.
On the topic of rife therapy, be careful calling a treatment "exotic." What exactly does that mean? Exotic to one person may be normal for another, and visa versa. Exotic is not a scientific or useful description of anything.
Also, some of the most useful rife type devices are not $3000, but $450. FYI. I do not sell any of these devices by the way.
There is some new and interesting evidence that shows why rife therapy may work, and it has to do with the ability for electromagnetic frequencies to disrupt bacterial biofilms. Here are some links:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=529182
http://www.pubmedcentral.nih.gov/articlerender.fcgi?&pubmedid=16056027
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=188289
Also, your ascertian that rife therapy has no scientific backing isn't true. If by scientific you mean double blind placebo controlled, you are correct. However, the definition of science was determined far before such studies exist. Do you have a copy of my other book "Lyme Disease and Rife Machines"? If not I'll send it to you free. Here is an excerpt from the book which has some science in it:
-----
This is a letter written by Doug MacLean. The date is approximately 1994. Doug was the first person ever to experiment with electromagnetic frequencies as a treatment for Lyme Disease. He invented the first modern rife machine used to fight Lyme Disease, known today as the Coil Machine. He used the Coil Machine to treat his own case of chronic Lyme Disease, and the machine cured him. Today, Doug is symptom free, and has not used antibiotics in over 15 years. All of the modern information about, and interest in, rife technology as a treatment for Lyme Disease can be traced back to Doug's experiments and experiences. In this way, Doug can be thought of as the "founding father" of rife technology as used to treat Lyme Disease. Doug has never made a penny from sharing what he knows about rife technology - he has made this information available as a free service to the Lyme Disease community.
Letter from Doug MacLean, Coil Machine Inventor
Dear Editor,
This letter is long overdue. Remember, I was the one who called you from "Big City" with the electromagnetic machine for Lyme disease?
I became interested in the effects of electromagnetic fields about four years ago, when I was ill with Lyme disease. In the spring of 1990, my G.I. tract was most infected. I was unable to eat anything but Ensure-Plus, and lost 20 pounds in 14 days. I was put on an IV (2 grams Rocephin daily for a month). However, I was still losing the battle. A relative told me that back in the 1930's, researchers found that specific electromagnetic frequencies would kill micro-organisms. I could see that this might be possible. I had nothing to lose, so I set up an experiment with two objectives:
1. Test and prove the theory that electromagnetic waves at fixed frequencies can kill the Lyme spirochete in vitro.
2. Try the same experiment in vivo.
EXPERIMENT #1 - In vitro
Equipment:
1. Leitz microscope body with Zeiss 100x oil lens. 1.32 NA and 10x eye pieces. 1000 power with dark field turret.
2. Spare lens.
3. "x1" slides with slipcovers.
4. Function generator
5. 700 watt audio amplifier. (Started with 20 watts).
6. 400 gauss coil for microscope. Tried many different kinds. Put coil around condenser lens below slide.
7. Amp meter.
8. Volt meter.
9. Live spirochetes . Facilities to cultivate them. After observing the spirochetes for some time, I applied 625 Hz and noticed a number-of unusual reactions from them:
a. Vibrated tail and appeared broken .
b. Bent back and forth from center.
c. Spinning (100rpm).
d. Straightened out.
The spirochetes that reacted did die in 20 minutes to 2 hours. 600 Hz had the same effect. I knew that the response curve for resonance was symmetrical, so I went to the midpoint of 612 and found this frequency to be more effective. 920 seemed to be another kill frequency, and it occurred to me that I was on a harmonic of 306. I tested 306 and found it to be the most effective for killing spirochetes - in fact, my wife and I had a "Herxheimer" for three days, from looking in the microscope when its coil was running at that frequency.
EXPERIMENT #2 - In vivo
Equipment:
1. Function generator
2. Amplifier
3. Amp meter
4. Volt meter
5. Oscilloscope
6. Coil
The coil was held around head, chest, waist and legs. Time: 30 seconds per positions - 3 minutes. Reaction: As with antibiotic treatment, there was a Jarisch-Herxheimer response with symptoms becoming worse before they went away. The treatment continued once a month for six months before most symptoms disappeared. NOTE: Care should be taken in start-up treatment because of large Jarisch-Herxheimer reactions. Expect two years for complete recovery.
That was just about four years ago. Since then, I have gained back 40 pounds and work full time. Today, I enjoy good health, which I know is directly attributable to the electromagnetic treatments. I have not had any antibiotics since 1989. Many people in our support group have treated themselves, with equally satisfying results. They built their own frequency machines with some differences, but basically the same unit. The components are available off the shelf from a nearby electronics and music store, for about $1500.
Sincerely, Doug
-----
I'll be the first to admit that more is unknown than known about rife therapy for Lyme disease. But for me, and many I've talked to, it has been one of the most helpful therapies. Not a magic bullet for sure, though.
I'm glad I found your blog, pretty good information! Look forward to some dialogue.
Bryan Rosner
Are you going to the ILADS conference this weekend? I'll be going, maybe we could chat there. You can email me off blog if you want so this conversation isn't eating up your comments space - theskyking -at- aol.com
Bryan Rosner
Byran- I have just read your two latest books. First of all, I am sorry you are still not all the way well. I would love to "review" what you were treated with to see what failed. Second, you are an effective and dynamic writer which makes for an interesting read. Third, you present everything in an absolute truth manner reguardless of whether you have significant proof of what you say or not. Just because someone told you it was so does not make it fact. I feel that could really lead the gullible and those without appropriate background in the wrong direction. You present a lot of solid information as well- its just all meshed together. I feel perhaps a more accurate title for one of the books would have been The Top Ten Things I Looked Into When They Couldn't Fix My Lymes Disease. You should not present these things all as the best cures- you don't even know what the cure rates are for each of these items nor how those cure rates compare with other therapies. I'm not saying that electromagnetic radiation won't affect bacterial cells (I'm more concerned with how it's potentially affecting human cells). You present many things as safe and effective- however, there are things in your book which could be dangerous especially for certain segments off the population (ie underlying renal disease) and things that are potentially harmful and whose safety has not been proven. It is fine to present all things- but you should present safety precautions and present those who have had side effects and problems from these "safe" protocols. You will only find what you look for- look for the bad as well and perhaps you can present a more well rounded view. Then again in some areas, you present good safety information. I realise however, this will not sell books and you are no different than any other author out there in that reguard. I am just concerned that you can cause as much harm as good. The skull and crossbones next to the cell wall antibiotics was a bit much. Did you not read the studies about which antibiotics inhibited the formation of cysts? Perhaps in combination with these drugs or a cyst killer, cell wall antibiotics may be effective and not cause cyst conversion. Truly we have few studies about what actually happens inside human beings- these are test tubes studies we all quote. We don't even know for sure what actually does what reguarding the different forms of Borrelia. But again- the absolute this is going to save you approach is what sells self help books. There are necessary evils to all professions I guess. I am serious about wanting to review what you had been treated with before you and the docs gave up on eachother. I am trying to correlate what is in sucessful treatments and unsucessful ones. Well, if you ask for an opinion, you get one.
Well put dogdoc
At the time I wrote the book, and for the most part still today, I do believe these treatments are the "top" treatments. Is my research based on double blind studies? No. Am I a doctor? No. And, I make both these points very clear in the book. I even say, in the introduction, that I am a layperson and this is just the result of my own personal research based on my own struggles. This should not be a point of confusion.
However, the research I present is based on a broad sample audience who has been treated by LLMDs and faield treatment and the book is aimed at people who have failed aggressive antibiotic treatment.
I polled over 2500 people for their results with various treatments, most of whom participate in a few Yahoo! online discussion groups.
I also attempted to disclaim and announce as experimental all the treatments I talk about. In fact ALL Lyme treatments are experimental and can have side effects, especially long term antibiotics. So the playing field is level in that regard. Risk is present. When I was aware of the risk I included it in the book.
I stand by my statement in the introduction to the book, page 11:
"So think of my book not as your final answer, but instead one of many resources, a roadmap to get you started."
Regarding which treatments failed to get me well, you can pretty much count on the fact that I've used every treatment you've ever heard of:-) OK, that may be an exageration, but let's just say I've used most of them.
Presently I am doing very well, 95%, living a full life, and I attribute about 90% of my progress to the therapies discussed in my book. Is there a better way? Maybe, maybe not, but I haven't found it yet.
Bryan
Bryan, thanks for your input on my blog. I like it when others challenge me. I hope you feel the same.
The issue about cell wall inhibitors is well taken. I had a patient who had seen numerous LLMDs over years and was told she would never get better. This patient was a high functioning PhD. I convinced her to start IV Rocephin. Soon after starting the Rocephin she came into my office in a panicked state. She saw that skull and cross bones dogdoc mentions from your "Top 10.." book. I had to reassure her that I believed you were mistaken and that the treatment was beneficial. (Actually, her well respected LLMD apparently told her that there was a war going on in her body like the Iraq insurgency; the battle could never be won). After 12 weeks of Rocephin she was in complete remission, for the first time in years! The recent Fallon/Columbia study validates the benefits of Rocephin for neroborreliosis. Dr. Cameron has published studies regarding the efficacy of Amoxil as sole therapy for chronic Lyme disease.
It is true that Lyme can assume L-forms and cyst forms. It is not clear which forms need to be targeted for successful Lyme therapy. There seems to be a lot of variability amongst patients.
Certainly the Marshall protocol which you emphasize is onerous and has been abandoned by all LLMDs that I know. It fails to accept the significance of spirochete and cyst in the disease. Marshall may have put his sarcoidosis in remission but the approach works poorly for Lyme disease. I do agree that there may be a relationship between some cases of sarcoid and Lyme. Marshall's published "cure" rates for chronic Lyme were poor (around 30%) last time I checked. My success rates are about 90%.
I do think that many of my colleagues have thrown out the baby with the bathwater. Vitamin D imbalance may be important. It's role with regard to Th1 vs. Th2 CD4 responses is well documented.
The exact role of Benicar has not been worked out. Many Lyme patients reach clinical remission despite dysregulated vit D levels.
I do caution patients to avoid vit D and excessive sun exposure. I have seen the occasional patient have a major relapse after excessive sun exposure. Heat exposure has also been linked to flares of MS.
It is interesting that you "stopped" the press to talk about the new, exciting salt and vitamin C protocol. The folks on Lyme photos recommend sunlight as part of the treatment for Lyme disease. Which is it? Sun or no sun?
Vit C and salt doesn't work. It may have a mild de-worming effect.
Some patients have noted worms in their stools with this therapy. So far I am not convinced.
Keep in mind: Placebos work 40% of the time.
Dr. Burascanno is considered a leading authority with regard to Lyme treatments. I think most will agree with this statements. Under the category of treatments which don't work he prominently lists: Rife machines.
Patients of mine have tried Rife machines. They have spent large sums of money. Some of these patients claim mild temporary relief. They still need Rocephin like my other patients. Again, the placebo effect seems the best explanation.
If such a machine did work it would be a feat of tremendous engineering. It would require re-calibration. No such machines have been scientifically studied or approved by the FDA. It reminds me of all those products sold on late night TV: Not sold in stores! If they were that great they would be sold in stores!
Doctors did apparently once use such devices in their offices before the advent of sulfa and penicillin. If they worked so well why did they disappear? This was before big pharma conspiracies. When my mother was a little girl she had severe pneumonia (early 1930s). He had a high fever and was critically ill. The doctor was summoned. He said she was in a crisis: It was 50/50, she would live or die. Luckily the outcome was good, otherwise, I wouldn't be here to hassle you. Apparently he left his Rife machine at home that day. This is the 21st century. Let's leave blood letting and other nostrums out of the conversation unless there is some valid proof. When popular books recommend unvalidated therapies, many desperate patients spend their hard earned cash on treatments that are at best of little or no value and potentially harmful.
Cheers
Why would the placebo effect account for rife-related improvement but not other therapies? I don’t buy the placebo effect explanation, it is more of an excuse to throw out a treatment that you don’t want to talk about.
When I first tried a rife machine it would have made no sense for the placebo effect to work. The therapies I actually believed in, e.g. the ones in which the placebo effect would have most likely showed up due to my explanation, didn’t help me all that much. Conversely, I expected absolutely no result from rife therapy and I was the skeptic of skeptics, yet, after use of the device, I had violent chills (can you “placebo” that?), other massive herxheimer reaction symptoms, and the next day, I felt better than I had in years and was able to even go on a run which I hadn’t done in a very long time. If that is the placebo effect, I’d be really surprised.
You should talk to more people who use rife. The Yahoo! online discussion group dedicated to Lyme and rife has 2500 members. If it didn’t work, why would they all keep using it?
Also, regarding cost of treatments, most people I talk to spend much much less money on rife therapies than they do on medical doctors who often charge (including consultation fees and drugs which are usually not covered by insurance) much much more money. You have to remember that while a rife machine may be more expensive (although I did tell you about the $450 option) it is a one time expense where as drugs and doctors visits keep adding up. I have spent probably about $8,000 treating my Lyme in the last 5 years. If you know of a cheaper program, let me hear about it.
Regarding the rife effect being technically infeasible, I agree with you. I don’t think the actual rife effect is at work. I don’t think it is deactivation of microorganisms with frequencies, because like you, I think that is too difficult to achieve. I think there is some other effect and I’m not sure what it is but it seems to be somewhat unique to Lyme. However, I think no fancy engineering is required in this case. Simple electromagnetic fields seem to work. Why does it have to be so complicated? Modern industry and technology has created what I believe to be an irrational expectation especially in intellectual people that the more complex something is, the more likely it is to function how you want it to. I think many times the opposite is actually true.
With regard to avoiding sunlight (per Marshall Protocol) or getting sunlight (per salt/c), I completely agree with you that current Lyme treatments and understanding are riddled with contradiction and I even mention this in my books. A lot is unknown still. I also agree that the M protocol ignores important aspects of treatment. This is why my book focused on “ten” treatments – I think you have to mix and match a little bit of various fanatical paradigms to get it right.
Regarding the cross over with sarc and Lyme, yes, definitely some cross over, and as long as we don’t know how much, it is unfair to say that Lyme patients don’t respond to sarc treatment. Maybe only 2% of Lyme patients have the cross over in which case you are mostly right. But if 30-50% have cross over, you are as much wrong as you are right. I know many patients who have got well or close to it with the Marshall protocol, and I am one of them. Maybe I have more sarc than Lyme. But I had a positive Lyme test. So that leaves us with more questions, not answers.
One of the reason the M protocol has been “abandoned” by LLMDs is because the herx reactions are too strong. This in my book is precisely the reason to continue using it instead of not using it. Benicar is benign, the reactions are not side effects they are measurably and confirmed herx reactions.
I have read a tremendous amount of literature on relapse rates with cell wall inhibitors, and I’ve seen a lot of people who that happens to, but I’ve also seen plenty of people who do seem to get remission with them. So maybe my position on this was a bit overstated in the book. I can take that criticism. I still think the skull and crossbones is appropriate given what I’ve read. If you haven’t read my Lyme/Rife I will send you a free copy as it presents dozens of studies to this effect.
Anyway, there are some thoughts for today. Yes, I like the challenge. If I didn’t like being challenged, I wouldn’t have sought out blogs like yours:-)
Also, I have a question for you. In the same way as you asking why rife didn't stick around if it had good cure rates, I must ask, why aren't your treatment techniques used more if you really do get 90% cure rate? I've never heard of a rate that high with chronic Lyme disease. You are saying that if the 2500 cases of refractory Lyme on the rife discussion group went to see you, 2250 of them would get cured? I have never heard any LLMD, not Burrascano or other, claim such a high cure rate.
On the other hand, I have talked to quite a few people using various alternatives that are discussed in my book and elsewhere, who are currently doing better than they've ever done before.
Maybe the whole reason for such heated debate is simply that we are both right. Maybe cases of Lyme are so different that everyone can respond differently and there isn't any one answer. Maybe many patients do well with your strategies and many do well with strategies completely different. Maybe that diversity is at the root of such seemingly vast dissagreement among people who basically want nothing more than to find a common ground (e.g. you and I).
By the way -- In this paragraph from my prior post, when I said "explanation," I meant EXPECTATION. Important difference:
When I first tried a rife machine it would have made no sense for the placebo effect to work. The therapies I actually believed in, e.g. the ones in which the placebo effect would have most likely showed up due to my EXPECTATION, didn’t help me all that much. Conversely, I expected absolutely no result from rife therapy and I was the skeptic of skeptics, yet, after use of the device, I had violent chills (can you “placebo” that?), other massive herxheimer reaction symptoms, and the next day, I felt better than I had in years and was able to even go on a run which I hadn’t done in a very long time. If that is the placebo effect, I’d be really surprised.
If I wanted to hear Bryan Rosner pitch his books on medical treatments, without a medical degree, I would read his books and participate in the forum he mentions. Is there no place to escape him?
He's right:
http://jcm.asm.org/cgi/reprint/28/6/1276.pdf
anon- did you find anything in this article about a 41 kdalton western blot band? Just because things share antibody responses, doesn't mean they share all responses.
Too all- anyone know of a cross reactivity study at 41 kdaltons?
Read the article:
page 1276:
"Flagellin of B. burgdoerferi has an approximate molecular mass of 41,000 daltons..."
page: 1278
"Western blot analysis was conducted to determine which surface or subsurface proteins of B. burgdorferi were recognized immuologically. Of the 11 serum samples listed in table 3, 10 had antibody to flagellin.."
(6/7 samples which had gum disease showed antibodies to flagellin)
Bryan-
Last time I read my PDR Benicar did not have the words benign and free of side effects listed under precautions.
How do you explain a 1/2 day herx and you are fine the next day? Body can't detox that fast.
If I polled 2000 people on a blog, what percentage of those would actually have Lyme disease? Especially given the propensity for people to self diagnose and treat this one.
Are there any long term (or short term) safety studies on the rife? How do you know you are not damaging other cell types- the body has many of all different sizes and contents.
The placebo effect can be a strong effect - mind is in charge of the body. This is why we double blind for it. Tincture of time helps many as well.
Nobody has double blinded studies behind all their therapy (we actually have a few on some antibiotics). However, we aren't out writing books on the ten best like we know it all or have it solved.
If you are not initially helped by antibiotics- you better question your diagnosis and make sure you rule everything else out. You may not get all the way well until all of your coinfections get treated or you have been treated extensively. This disease is bacterial after all. If you actually can diagnose Lymes, then 90% of your patients should get better. If you work on the patients until they get better and you don't put them in deep debt to be treated, then perhaps you might be more successful than the average guy. Especially if you don't rely on smoke and mirrors. If you had doc to start with, you might have ended up fixed and not out of money. All lymes docs are not created equal. All people that have "failed" antibiotics are not always given the appropriate ones.
You can bash conventional medicine- yet you won't discuss how you were treated and diagnosed.
So you had no improvement on antibiotics? And you assume that noone else will? I'm well- how can that be? I didn't have any of the top ten therapies supposedly.
Look I'm not saying anyone or anything can fix everything. Nor that I agree with the way a lot of LLMD's treat. However, BYRAN- YOU HAVE TREATED ONE WHOLE PERSON. Lets leave the book writing for someone who has actually treated a lot of people and made them better. Then the 10 best treatments might actually mean the 10 things that made the majority of people well. Not 10 things to fill a book with and sell it.
Look- I'm sorry about how your life went. I didn't pick a fancy expensive high profile doc. I picked one who really cares about his patients and who keeps trying and learning. I picked one who is probably losing a lot of money on Lyme's disease but does it because cares. Perhaps a wise choice of docs makes a difference in proper initial diagnosis, success rates and cost of treatment?
I wish we could get some studys going on all conventional and alternative therapys. We are likely to get surprises in both. We just don't know. But I think if you take a severe neuroborreliosis patient with Lymes, Bartonella, and Babesia and represent to them they have an equal chance of getting cured with salt and vitamen c as they do with IV Rocephin with biaxin and metronidazole, followed by rifampin and doxy, followed by zithro and mepron... then who have you just helped? These are tough patients- you might as well call the healer and get touched on national tv. I'll bet my doc against your salt and vitamen c any day on that patient.
My BIGGEST beef with it all is encouraging people to self diagnose and self treat. There are going to be people with cancers, systemic fungal diseases, tb, ect. that could have the "signs of Lymes" and could die because of delay in diagnosis and treatment.
I don't have an issue with alternative therapies, rife machines, or anything else. I have an issue with potentially harming people. I have issues with traditional medicine in this as well. You can put all the "disclaimers" you want- they'll save your legal butt. But if you present yourself as an authority on Lymes treatment and state that such and such a treatment is effective and safe, some people will take it as fact because you have written it. Doc- I'm sorry for this ahead of time. Bryan, near as I can tell from what you have written about your history, you are an expert on how to stupidly spend money and abuse your body. I have never heard of anyone doing that many crazy things to himself. THIS qualifies you as an expert in the treatment of Lyme's disease?
To all- I am sorry to be so antagonistic. I think the Top 10 book is potentially harmful in the way it is written and will discourage people from getting appropriate diagnosis and treatment. It is not the subjects covered- it is the way it is discussed. I have no issue with presenting any alternative therapies.
Bryan, I am the one who has always said there is only medicine- it should be all combined and not divided. Everything should be studied. Doesn't matter what is is- medicine should have the benefit of everything we can find. I wish I knew how to combine it all- but everyone is in different camps. Rife therapy needs to be studied as well as a lot of other things. Unless everyone stops bashing eachother and gets out of the camps, it is never going to change. Books like the top ten don't get people to see eye to eye- they just make the conflict deeper. A book that portrays all different approaches and opinions and includes EXPERTS giving the opinions in each area (ie people that actually treat it not just talk about it or have tried it on themselves) might be a good step. Pipe dream- I have never seen so much division of docs and everyone on one subject before. As usual, I have said way too much.
Bryan-
Last time I read my PDR Benicar did not have the words benign and free of side effects listed under precautions.
How do you explain a 1/2 day herx and you are fine the next day? Body can't detox that fast.
If I polled 2000 people on a blog, what percentage of those would actually have Lyme disease? Especially given the propensity for people to self diagnose and treat this one.
Are there any long term (or short term) safety studies on the rife? How do you know you are not damaging other cell types- the body has many of all different sizes and contents.
The placebo effect can be a strong effect - mind is in charge of the body. This is why we double blind for it. Tincture of time helps many as well.
Nobody has double blinded studies behind all their therapy (we actually have a few on some antibiotics). However, we aren't out writing books on the ten best like we know it all or have it solved.
If you are not initially helped by antibiotics- you better question your diagnosis and make sure you rule everything else out. You may not get all the way well until all of your coinfections get treated or you have been treated extensively. This disease is bacterial after all. If you actually can diagnose Lymes, then 90% of your patients should get better. If you work on the patients until they get better and you don't put them in deep debt to be treated, then perhaps you might be more successful than the average guy. Especially if you don't rely on smoke and mirrors. If you had doc to start with, you might have ended up fixed and not out of money. All lymes docs are not created equal. All people that have "failed" antibiotics are not always given the appropriate ones.
You can bash conventional medicine- yet you won't discuss how you were treated and diagnosed.
So you had no improvement on antibiotics? And you assume that noone else will? I'm well- how can that be? I didn't have any of the top ten therapies supposedly.
Look I'm not saying anyone or anything can fix everything. Nor that I agree with the way a lot of LLMD's treat. However, BYRAN- YOU HAVE TREATED ONE WHOLE PERSON. Lets leave the book writing for someone who has actually treated a lot of people and made them better. Then the 10 best treatments might actually mean the 10 things that made the majority of people well. Not 10 things to fill a book with and sell it.
Look- I'm sorry about how your life went. I didn't pick a fancy expensive high profile doc. I picked one who really cares about his patients and who keeps trying and learning. I picked one who is probably losing a lot of money on Lyme's disease but does it because cares. Perhaps a wise choice of docs makes a difference in proper initial diagnosis, success rates and cost of treatment?
I wish we could get some studys going on all conventional and alternative therapys. We are likely to get surprises in both. We just don't know. But I think if you take a severe neuroborreliosis patient with Lymes, Bartonella, and Babesia and represent to them they have an equal chance of getting cured with salt and vitamen c as they do with IV Rocephin with biaxin and metronidazole, followed by rifampin and doxy, followed by zithro and mepron... then who have you just helped? These are tough patients- you might as well call the healer and get touched on national tv. I'll bet my doc against your salt and vitamen c any day on that patient.
My BIGGEST beef with it all is encouraging people to self diagnose and self treat. There are going to be people with cancers, systemic fungal diseases, tb, ect. that could have the "signs of Lymes" and could die because of delay in diagnosis and treatment.
I don't have an issue with alternative therapies, rife machines, or anything else. I have an issue with potentially harming people. I have issues with traditional medicine in this as well. You can put all the "disclaimers" you want- they'll save your legal butt. But if you present yourself as an authority on Lymes treatment and state that such and such a treatment is effective and safe, some people will take it as fact because you have written it. Doc- I'm sorry for this ahead of time. Bryan, near as I can tell from what you have written about your history, you are an expert on how to stupidly spend money and abuse your body. I have never heard of anyone doing that many crazy things to himself. THIS qualifies you as an expert in the treatment of Lyme's disease?
To all- I am sorry to be so antagonistic. I think the Top 10 book is potentially harmful in the way it is written and will discourage people from getting appropriate diagnosis and treatment. It is not the subjects covered- it is the way it is discussed. I have no issue with presenting any alternative therapies.
Bryan, I am the one who has always said there is only medicine- it should be all combined and not divided. Everything should be studied. Doesn't matter what is is- medicine should have the benefit of everything we can find. I wish I knew how to combine it all- but everyone is in different camps. Rife therapy needs to be studied as well as a lot of other things. Unless everyone stops bashing eachother and gets out of the camps, it is never going to change. Books like the top ten don't get people to see eye to eye- they just make the conflict deeper. A book that portrays all different approaches and opinions and includes EXPERTS giving the opinions in each area (ie people that actually treat it not just talk about it or have tried it on themselves) might be a good step. Pipe dream- I have never seen so much division of docs and everyone on one subject before. As usual, I have said way too much.
You obviously haven't read my books, or if you did, you don't remember them all that well. I was treated with all the fancy antibiotic combinations as were many of the people who turn to alternatives. The Top 10 book is for people who have failed those routes. Not to be replaced instead of those routes. The book explains that the fancy antibiiotics you talk about SHOULD be the first line of defense against Lyme.
I am very clear in the book that I am a layperson and the book(s) are based on my experiences and research. What don't you get about that?
I get about 3-5 thank-you notes per week. I get a few complaints too. Overall, from talking to many people, I am firmly convinced my books are doing more good than harm. In fact, many top Lyme doctors recommend my book and even a few carry it in their offices.
You also don't get how much IV antibiotics cost. When I used them without insurance coverage, it was about $10,000. That is not the cost of a fancy doctor, just the drugs.
Someone today just said if they were running out of their house they'd grab their bible and my book! Read for yourself:
http://heallyme.wordpress.com/
I guess this conversation isn't going anywhere. I think you pretty much see me as ignorant, and I see you as inexperienced in the nuances of Lyme treatment in which I have been partaking in full time study for 7 years.
I have talked to a number of people who had been taking all kinds of fancy antibiotics for years and finally reclaimed health with the salt/c treatment. Placebo effect is a good excuse to write off their stories. Maybe it is the placebo effect, but I have lots of reason to believe its not.
I also talk to people who use IV Rocephin and get totally well, and I acknowledge that this happens oten. It just depends, mostly on variables which no one understands.
Most of the people on the Lyme/Rife list do have Lyme disease, and saying they probably or may not, is just another excuse to justify a certain way of thinking, namely, the way of thinking that says "they all must be wrong - all 2000 of them."
As a Christian, I still desire to love you and the rest of the world the best I can. That is what I will continue to try to do, whether through books, blog debates or taking care of my 1-year old, which I am now signing off to go do.
Peace,
Bryan Rosner
If you want, I can give you the name of a doctor (M.D.) in California who was treated with all the fancy antibiotics, positive Lyme test, didn't get well, and is now 100% better using a rife machine. He is willing to talk to people and he will be at the ILADS conference.
Rife machines may have side effects, and my books state that. It is a question of cost/benefit ratio. It is experimental and that should be known.
41band
The study cited does not clarify the 41band cross reactivity issue. ELISA technology was used, not Western Blot. The authors also admit there may be many patients who have been exposed to Lyme subclinically. The flagellin 41kd for Bb is mentioned. The weight of other spirochete flagellin antibodies is not addressed. My blog lists the molecular weight of flagellin antibodies associated with T.denticola. There may be other spirochetes which cross react with the 41band, but I have seen no literature to support this widely held belief. If someone has no gum disease and no syphilis, both of which which can be excluded easily, then how does one explain the 41band even if there is cross reactivity?
Bryan and dogdoc:
Too much vitriol.
I don't care what religion you are. I am Jewish and I love everyone too!
Chronic Lyme will continue to be controversial for years to come.
Patients get better with various forms of heat therapy. Fevers are a natural way for the body to eliminate microbes. Aerobic excercise may increase blood flow and oxygenation of tissues; but it also raises body temperature and acts in the same manner as a fever.
I don't know what EM energy does. I know that it has biological effects. There is a potential for harm
I thought magnetic therapy was nonsense. And then some years ago a read a study published in a respected journal which demonstrated some benefits for patients with diabetic neuropathy.
I still don't see reputable docs using it.
Accupunture works, even on dogs.
I don't know why.
My experience is that patients who have experimented with Rife therapy have still require standard medical care. I have seen no evidence that the amount of care required for such patients is altered.
Even patients with terminal cancer occasionally experience mysterious total remission. I have such examples in my practice. As physicians we need to be skeptical. The mind-body connection cannot be underestimated.
My 90% cure rate includes many patients who have mild forms of the disease. Some patients ( I saw three today) are really hard to fix). I never give up and usually find something that works.
I have been unable to help patients with Lyme related Alzheimer's disease. Fibromyalgia is also difficult to cure, although most do improve.
MS patients do well. I have one ALS patient who is stable. My 18 year old girl(patient) who came to me in a wheel chair is now walking. My patient with paraplegia is getting better.
Patients who have a positive attitude do better.
It is definitely a challenging disease. Unfortunately there is very little research being done. As physicians and scientists we are trained to discount anecdotal accounts. Sometimes that is all we have to go on, so we go out on a limb. We just have to be careful. If the limb falls off the tree we got a lot of "'splaining" to do.
I have read blogs where everyone swears that Samento has cured them. I have seen scores of patients who have been on Samento. Not one has experienced significant improvement.
Maybe this relates to bias of my sample: or, maybe the patients who makes these claims do not really have Lyme. Today someone extolled the virtues of garlic and oregano.
If you think something will work, there is a good chance it will. At least on a short term basis.
Samento did not work for me. But I think it would help if someone in recovery stage(no active infection) or as adjunct treatment to boost immune system. Same with Garlic and oregano. I crave garlic spicy food whenever I develope whitish tougue on antibiotic which now I know it is yeast overgrowth. At least twice I noticed i feel great after eating garlic and the whitish stuff on tougue disappeared. Of course I took Probiotics to supply friendly bacteria too. Oil of oregano is said to be good yeast killer so I bought one and will try it. I do think at some point of antibiotic treament, yeast will contribute many symptoms too.
"ELISA technology was used, not Western Blot.
While the main thrust of the article involved ELISA testing, the authors did perform Western Blot: see pages 1277 and 1278.
"The authors also admit there may be many patients who have been exposed to Lyme subclinically."
The authors cite a study in which 10% of subjects demonstrated subclinical infection of Bb. This is hardly "many."
If you don't believe there is cross-reactivity with periodontal disease, and that this article addresses the issue, then why do you state "If someone has no gum disease and no syphilis, both of which which can be excluded easily..." How often do you exclude gum disease in your patients?
By the way, you mention a 90% cure rate with lyme patients. But in an earlier post, you write that you have treated between 500 and 1000 patients for lyme disease. If you cannot narrow your number of Lyme patients to better than 50% error, how can you determine the 90% rate?
I wanted to comment on the rife machine, but I had to stop laughing first. In order to transmit an electromagnetic (EM) wave at 300 Hz efficiently, the size of the antenna would need to be on the order of 300,000 feet, or 56 miles. Assuming you could build such an antenna, you would have to stand 5 miles from it in order to receive the energy. Now maybe you could use a coil (though the term '400 gauss coil' makes no sense) to create a large enough magnetic field to kill bacterial organisms. But what is this doing to the rest of the human tissue?
Bryan- I like everyone, religious or not. This is a discussion of medical philosophy. It is not personal. I reread your book Top Ten and it was indeed presented as cutting edge treatment for Lyme's disease (did I get the punctuation correct for you and doc- he hates that also). Perhaps the others were different. I do NOT think you are ignorant (other than perhaps the overseas treatment where the guy died in bed next to you)- I think you have massed a great deal of knowledge. I don't think much of the antibiotics either and yes I know how much they cost. I don't think we have a top 10 treatments INCLUDING the antibiotics. If you are treating someone for years and you don't get them all better- you don't have a good treatment. This is a horrible, devestating disease complex (in its worst form). Representing the top 10 anything I feel is misleading including long, involved IV treatment that bankrupts people. We do not have the information backing ANY of it. It is all wrong. I think you have done an excellent job compiling information from every source you could find. But I still don't think that makes you qualified to tell the world you know the 10 best treatments for chronic Lyme's disease. I don't think anyones qualified for that. I don't think we've found it yet or this would be a mute point. As it is, there are a whole lot of people scraping by trying to find anything to get their life back. I live my life with one of those people. The answers not salt or a year of IV antibiotics. We need to find the answer. I don't think you are a bad person- I think that you are trying to help and find anything you can that might help people as well as yourself. I think a lot of people are trying to do that in a lot of ways. Let me try a different way- please with your next book discuss the importance of making sure you are thoroughly worked up for other diseases that can mimic or coexist with Lyme's disease. Find a way to take people step by step through the maze of doctors to find someone who knows what they are doing and isn't going to bankrupt them or misdiagnose them if they can help it. Discuss tests and what they mean- help people understand. You are an effective writer. Discuss the different types of LLMD's, schools of thought behind the treatments, pro's and cons. Discuss all of the potential treatments- get all different opinions from those who treat as well as support groups. You could help people avoid where you have been- but that is more than than just the top ten of this year. What you don't understand is that I think we have problems on all ends of the spectrum here and people are being hurt by all of it. Being told you need to have $100,000 worth of IV antibiotics to get well is crazy- first of all, with this disease complex there are no guarentees of getting well (again- I'm discussing the sickest neuroborreliosis patients not the simple ones). Second of all, these therapies are every bit as controversial and non research backed as salt and C. Patients should be presented with all of their choices including costs and risks/ benefits. By the way, on the next book wish list, could you research Rifampin and include it. It is inexpensive, oral, has good cns penetration, and helps some with Bartonella and Lyme's where others do not. Listen- I'm not saying you are an idiot or uninformed. I just don't like the top ten treatments approach. It is described as a way to blend conventional and alternative therapy into their own treatment plan. I really think you need to have included testing, exclusion of other diseases, choosing a doctor, choices within conventional and alternative therapy. These people need help and information. They cannot form a treatment plan in an informed manner without it. I am sure that you would not want anyone to try a rife machine first and delay diagnosis if they had cancer or something else causing their signs. Hate me if you will. I think you missed some things in the top ten approach. I don't think you did it intentionally. My four little ones are in bed, so we at least have one thing in common. I suspect we also share the need to try to come up with something better for all the suffering people out there. I really would be interested in what you were treated with and for what lengths of time. We can learn from what doesn't work- try to find our mistakes. We all make them - fancy doctors or regular old ones like me. I think from a different side than you- I look to what we might have missed or mistreated as docs and how we might do better with the next patient. There is much to learn from all directions. We don't have the answer yet.
I can receive your criticism on the title; the title was chosen with the help of a marketing firm to "sell books." My motivation to write the book was to provide valuable information but the book was packaged to sell. So, your point is well taken and in future books I will be more careful about the title. Thank you for your honesty.
The main finding in the "top 10" book and this is something that applies interdisciplinary, is that Lyme disease requires a long term approach (at least chronic Lyme) and therefore the treatments have to be sustainable, non-toxic, affordable, etc. The main aim of the book was to present such treatments.
The therapies I used that didn't work were mostly antibiotics taken short and Long term. They helped tremendously but I always relapsed no matter which combination or for what duration.
If you understand the story of how rife treatment for Lyme got started, you'll see why it has helped so many people. A mechanical engineer in the 1980's did experiments and saw spirochetes get blasted apart under a microscope by the frequencies. I've met him, his name is Doug MacLean, I can give anyone his phone number who is interested. He is a brilliant man. He is already financially very well off and has never sold any Lyme or medical stuff, so that's not his motivation.
I agree also that rife therapy is not a panacea and "standard care" is also needed; hence the desire to blend conventional and alternative medicine.
As the antibiotics failed me I tried dozens of other alternative therapies and kept getting worse. I expected the same of all of them yet rife therapy was what got me stable. If that is the placebo effect, why didn't it happen for all the other therapies. I am very convinced that if everyone in this blog sat down with me and I could share all the research, you would all believe that rife therapy does kill certain types of Lyme. Not all types (not cyst or variant probably) and not a panacea. But a much-needed break from pharmaceuticals. I don't know why rife works and it's probably not the original "rife effect." But it does work. Many of the people who are using it and making the machines are PhD engineers who have or have had Lyme. If you read the studies I posted above, you will see that NIH, PubMed, and peer reviewed research show that electromagnetic fields DO IN FACT inhibit and kill bacteria. This is not a guess! It is proven! Please read the studies posted above in my previous comment. It is not a guessing game.
Could rife have side effects? Yes, same way IV antibiotics can.
By the way, neither of the following are correct:
Lymes disease
Lyme's disease.
The correct way is:
Lyme disease.
No "s."
Bryan
The second half of this book excerpt tells the Doug's story of how rife was first used for Lyme disease.
http://www.lymebook.com/whatisa.htm
I've seen Doug's lab equipment and talked with him at length. No one has repeated his experiment that I know of but it would be easy enough to do. I'd love to do it, does anyone have spirochetes and a microscope?
Bryan, By the way, don't count me in the group of people that think everything is placebo effect or that there are no effective treatments for things that don't come out of pill bottles. I do think the mind has powerful effects on the body and that the placebo effect can be real- does it matter what helped as long as they are well? Many "alternative" treatments (I hate that word- it is egotistical to think the world revolves around western medicine) have physiologic effects as much or more than any bottle of pills we have. Many natural things have side effects as well. Many things we don't even know the side effects of yet. I can give anything or do anything to a patient and a lot of the time they will get better in spite of me- patients heal and get better on their own. We lived as a species long before medicine existed.It is not simple and we just don't know exactly what is doing what sometimes. I don't think it should be portrayed as simple, nor that we should dismiss out of hand anything that seems to help people. We need to investigate those things, look for side effects, look for real effects. You just don't release a treatment out into a population without having looked carefully at side effects. I understand this is a desperate disease- but there are even more desperate diseases we could induce. This goes for all types of therapy.
Guys-
Admittedly, the question of electrogmagnetics killing Lyme bacteria is one of contention.
However, the question of electromagnetics having positive health benefits is VERY well established, not contested at all. Check out this excerpt, which is loaded with peer reviewed references for bone healing, depression, hypoperfusion, fibroymalgia, insomnia, multiple sclerosis, etc.
http://www.lymebook.com/pulsed-electro-magnetic-fields
Dogdoc, regarding your recent post, yes, I do agree that some things can induce more serious side effects than they are worth. In other words, unstudied alternative treatments can be very very dangerous.
However, while I will of course acknowledge the potential side effects of rife, I doubt they are that extreme, and I personally beleive that for me, my own use, the risks are justified.
I know hundreds of people (literally) who have experimented extensively with all kinds of these devices since the 80's, and none of them have ill effects to report yet. Now let me be clear - THIS DOES NOT MEAN THEY ARE SAFE! Of course, my limited, unscientific observation of a handfull of people using the technology doesn't qualify it as safe.
But, if there were some dreaded, horrid complication that arises with rife therapy use, I think I'd know about it by now. So, I would suggest that any side effects are either rare or mild. No one has cancer that I know of and many of these people have used this stuff a few times per week or more since 1982.
So from my perspective, it is *reasponably* safe. But still experimental. And in desperate situations people should be given the choice.
Bryan
You keep answering me while I'm answering you so it won't make much sense. The Lyme's was a joke for you and doc. I don't discount the electromagnetic effects- I am worried about unknown effects on other tissues. Sometimes we think things are benign when indeed the side effects don't show up for an extended period of time. Think of the poor shoe salesmen that used state of the art flouroscopy to fit shoes before we knew that radiation was a bad thing. The cancer he got 20 years later still killed him. If you can kill a bacteria, you can kill another cell type as well. Or alter one genetically to induce abnormal division- ie set off a cancer. My concern here is that we study longterm safety in some other mammals before we set off exposing everyone. There ARE worse things to have than Borreliosis. I don't think we should give up entirely on antibiotics either- we need to work on finding the right one/ ones to eradicate versus just keep at bay. In a substainable, cost effective manner. And yes- be careful of side effects. At least here, we can predict some of the side effects because these drugs have been in use so long. In other chronic bacterial diseases like TB, we had to create long term combinations of new antibiotics to fight it. Borreliosis may be like that- and what helps temporarily vs long term may help give us some clues on where to go with it. We need to look at everything. And try to do no harm while we muddle our way through. Or at least as little harm as possible. We also need to know what we are studying- if Borrelia do indeed set up a state of compromised cellular immunity (good evidence), then we are likely to be dealing with coinfections not just with tick bourne organisms, but also the common mycoplasmas, chlamydias, neurotropic viruses, ect- anything thats likes neuro tissue and finds the immunocompromised environment friendly. It may even be one of the immunocompromising viruses (those that stimulate IL-10 release also) that lets the Borrelia take over- many other tough diseases in critters have virus- bacteria interaction like this. In other words, we may need to kill a bunch of things in order to get the whole thing cured. It is a complex issue. We might be able to approach it from the immune side also- some things are up and coming there potentially. We need to examine any angle we can get. I do know a bit about rife and Doug's info. Again my fear here is that we don't know the side effects and they may not be "like IV antibiotics". Those have a list of well known side effects tested over a long time in a lot of people. That doesn't make them any better- just known. The body is formed by a complex of many different cells and tissues- they are likely to react differently in different areas to something like electromagnetic fields. I really haven't done a lot of research in this area- great, one more thing to look into (smile- docs always doing that to me). Ok, when I get a chance see if anyones looked into possible deleterious effects of em and things it would be used for and potentially studied under. Seems like I remeber some things on that but its too late and I'm too tired to put it together now. Night.
Is this the DogDoc or Bryan Rosner blog? I don't remember seeing their names on the title.
I have been following the Blog for several weeks now, but am about done as it has turned into a personal comment forum for 2 people only.
Good morning. One more short nights sleep. A few quick comments. I really don't know much about rife or magnetic therapy in general. Honestly, when I looked at it initially, it looked about like longterm administered antibiotics in a pulse dose manner to maintain people (which a number of docs do sucessfully using inexpensive antibiotics in a substainable manner). In other words- not the answer, not a cure. The body fixes itself- antibiotics just reduce bacterial loads until the immune system is not overwhelmed and can take care of things. I really don't know a lot about magnetic field therapy- I know it is used in sports medicine and healing. Eastern medicine uses magnetic therapy as well as other physical manipulations (acupuncture, acupresseure, ect) to balance energy flow through the body. It is hard to wrap your head around the field and the terminology if you have been trained in western medicine. It is helpful if you substitute the neuroendocrine pathways in your mind when thinking about how something might work. I would hope we are using some magnetic physical principle similar to this, as apposed to direct disruption of cells. That would be a bit less scary. I know in the field of eastern medicine, magnetism is considered to be a powerful effect with the power to cause harm. In other words- I don't know much of anything on this subject. I am willing to learn however. Later, when I get a chance, I will look into it more. Where are the plans available for rife again? My other half (the engineer) may be able to look at them and help me understand what they are producing.
FCC WHAT BIOLOGICAL EFFECTS CAN BE CAUSED BY RF ENERGY?
Biological effects can result from exposure to RF energy. Biological effects that result from heating of tissue by RF energy are often referred to as "thermal" effects. It has been known for many years that exposure to very high levels of RF radiation can be harmful due to the ability of RF energy to heat biological tissue rapidly. This is the principle by which microwave ovens cook food.
http://www.fcc.gov/oet/rfsafety/rf-faqs.html#Q2
I have found that a heating pad can be your friend when having joint pains. I wonder if it’s possible that the heat is just bad for the bugs.
Actually, I know of a treatment, similar to the Rife machine, that is guaranteed to knock out the Lyme bacteria. It uses AC electricity, but requires far less and much simpler equipment than the Rife machine.
Take an old lamp, or anything with an AC electric cord, or even an old extension cord. Cut the cord at the base of the lamp, so all you have left is the cord and AC plug. Strip the ends of the wire bare. Plug the cord into a wall outlet and hold on to the bare ends with both hands. Now, you will "herx" badly, with jolting pain and twitching. But this will kill the Lyme bacteria. It is a broad-spectrum treatment, so all the bacteria in your body will be killed off. So be sure to take a good pro-biotic afterward to replenish the good bacteria.
Avalon- I'm sorry.
Another "duh" moment. I was a bit confused as to whether these devices created a static magnetic field or emmitted electromagnetic radiation. I guess the 300mHz should have given that away. You would think the child of a physics research scientist would have grown up with a better innate understanding. I never liked physics- got A's but it always seemed abstract to me.
Ok, so I am slowly getting up to speed. We use very high frequency pulsed em devices in surgery to create heat effects on the tissue in an attempt to create cell death and limit fibrosis and inflammation. The biofilm work is being done at lower frequencies of 10 mHz aimed mostly at nosocomial infections in bioimplanted devices. These effects appear to be due to disruption of the polymeric charged matrix secreted by the bacteria and not heat related. The human body gets max absorption at about 70 MhZ and due to resonances and such, the 30 to 300 mHz levels are most dangerous to the tissue effects. The FCC sets safety requirements for max RF exposure at each frequency level. We use much lower frequencies for electrosurgery but over 100kHz so we don't interfere with neuromuscular function. Standard ac current is down in the 50 to 60 hertz range. Did I get the spectrum and where stuff fits into it correct? I hate physics and am mechanically clueless!
Ok- then we have basic safety levels set at least for heat effects. (the world health organization's has a database for research into other effects). Can someone who is more "physically" inclined tell me if it is possible to calculate a frequency and output level from rife and see whether it meets the most basic FCC RF safety requirements?
Again- please pardon my stupidity in this subject. Give me a complex interaction of cytokines any day over this stuff.
The frequencies most often used in the Lyme community are 300hz to 2100hz and sometimes up to 900khz. Yes I did get the hz and khz right, we are talking lower than the ones in the biofilm study. It may not be the frequencies that matter but the H field or E field, since the devices we use have very strong fields on both accounts.
Believe it or not, while I do understand the energies being produced, I don't exactly know why rife works.
Doug's experiment is the closest thing I have to evidence, where he observed:
---
“I became interested in the effects of electromagnetic fields when I was ill with Lyme disease, after a double-dose of IV antibiotic failed to get me well. I placed Lyme Disease spirochetes beneath a dark field microscope, and after observing them for some time, I applied 625 Hz (an electromagnetic frequency). I noticed a number of unusual reactions from the spirochetes:
a. Vibrated and appeared broken
b. Bent back and forth from center
c. Spinning (100rpm)
d. Straightened out
The spirochetes that did react died in 20 minutes to 2 hours. I had a ‘Herxheimer’ for three days from that experiment. We then began treating ourselves with a homemade electromagnetic frequency machine. After six months most symptoms disappeared! That was about four years ago. Since then, I have gained back 40 pounds and work full time. Today, I enjoy good health, which I know is attributable to the electro-magnetic treatments. Many people in our support group have treated themselves with equally satisfying results.”
- Doug MacLean, Coil Machine Inventor Mechanical engineer and first researcher to study the effects of electromagnetic frequencies on Lyme Disease
You might think placebo effect or "natural healing of the body" accounts for Doug's improvement and not the rife treatments. This isn't the case. I've heard from dozens of people who had chronic Lyme for years, never getting better. Then with rife, they got better. Some people DON'T get better with rife, I'm not sure why. I am one of the people who got better. I "believed" other therapies would work but they failed; so it is not the placebo effect. Anyone who has gone through the process and FELT their body healing and the disease receding, knows this.
I had physical symptoms dissapear that could not be "mind over matter."
I can't convince anyone of these truths, they are self evident to those who have been through the process. To the rest of the people who are skeptical, I can empathize - I was skeptical too.
I hope the formal studies that you will need to be convinced arrive soon. In the meantime, I don't blame you if you remain skeptical.
Bryan
PS - I'm off to the ILADS conference and will be mostly away from computer for the next 7 days (also taking a little vaca with wife and son after conference).
Bryan- Have a great conference and vacation with your family. When it comes down to it- thats what really matters (and being well enough to enjoy that time). When dramatic changes occur in something serious enough that it usually doesn't resolve spontaneously, the placebo effect is not going to account for it. If you take a pill and feel better, a percentage of people will have placebo effect. When you take a pill and go from a neurologic nightmare to someone with no visual deficits, hearing deficits, numbness, shooting pains, ect something happened esp if that disorder in not likely to spontaneously resolve. The word "pill" can be substituted for any treatment. Look- according to IDS I don't have Lyme disease and the pills I am taking are only causing placebo effect. I have a normal neuro exam now, nothing is numb, nothing tingles or hurts, my joints feel good, my brain is clear and thinking normally. I don't care what effect is doing it or what you want to call what I have. It's nice to be well. The things I am taking are experimental- we have no studies of safety with these meds in combo nor any studies on there actual use in patients. I am taking an informed risk and hoping since they didn't hurt they guys before me that took them, they won't hurt me. Does this sound familiar? Have a great trip!
Thanks if you like my blog. You don't have to read the side comments.
They can be useful and quite entertaining.
I like hearing what others have to say.
Good to see your blog, rife machine would throw the same frequency back into the body for a given length of time. The information you have provided is very helpful to me.
Ok DogDoc & Bryan,
I have enjoyed your bantering back n forth, but now I would like you both to weigh in on this.
My husband almost 65 yrs. old, who up until almost 2 years ago, was a very strong and ambitious guy, not to mention workaholic.
He noticed shortness of breath upon exertion and was misdiagnosed for 16 months with asthma, even though he told several doctors that he couldn't lay down at all, and consequently got no sleep.
Finally in Oct. of 2010 a new pulmonologist finally listened to him when he told him he thought it was the outside of his lung, not the inside, so after some tests, sent him to a neurologist, who then diagnosed him with ALS.
They also found he has a bilateral paralyzed diaphragm and is on a BiPap machine with 2% concentrated oxygen, which he only needs when he goes to sleep as his oxygen drops in the 70's, but otherwise is 98 to 99% as he was never a smoker.
We of course did not want to accept this diagnosis and learned that lyme can mimic ms, parkinsons and als, so we tested at IgeneX positive with 4 positive bands and 1 indeterminate, but that wasn't good enough, I wanted to make sure before I put him through anymore then he was already going through, so I insisted they do the Epitope test which is better then 98% that he indeed has lyme.
He also tested positive for Ehrichlia Chaffeenis.
Well there was NOT one doctor in our area, which is Madison, Wisconsin, with our famous University of Wisconsin Hospital & Clinics and the Dean System, still we could not find one doctor who was literate in lyme.
They make you feel like your crazy and grabbing at straws.
He should just take the als diagnosis and deal with it.
Well of course, I would not just deal with it, so we found a lyme doctor 2 hours north of us and started some antibiotics. He just had such a hard time taking pills, making him sick, so he went on IV Ceftriaxone, which I researched and they are having a clinical trial for als and it is also a treatment for lyme, but his first infusion, he developed hives, so we had to stop and start Azithromyicin, along with Doxy, 100mg. twice per day.
I forgot to mention we had to drive 4 1/2 hours north to get the picc line put in by a radiologist who had lyme disease.
He is struggling so much with his breathing while taking the antibiotics, but he still isn't having trouble with his limbs or talking or swallowing.
He is left handed and noticed 4 or 5 years ago, weakness in his left hand and it looks alittle like it is atrophied.
He has also lost 45 to 50 lbs, so is 128 lbs and is 5'61/2" so we are trying to help him eat and build up his muscle loss.
He is a very fussy eater so things have to taste good to him otherwise he will not take it.
He also drinks diet coke, which I have tried to get him off from, with not much luck, he doesn't drink as much as he used to, but can't seem to give it up.
So, I would love to hear from both of you, as to what you each would recommend, as you can imagine,
"Time is of the essence".
Thank you so much for your time in advance, I am very anxious to hear from you.
Dixie
p,s, If anyone has any stories or information on paralyzed diaphragm & lyme, please feel free to email me at: dixieleeo@tds.net
or if you have any information or advice.
Ok DogDoc & Bryan,
I have enjoyed your bantering back n forth, but now I would like you both to weigh in on this.
My husband almost 65 yrs. old, who up until almost 2 years ago, was a very strong and ambitious guy, not to mention workaholic.
He noticed shortness of breath upon exertion and was misdiagnosed for 16 months with asthma, even though he told several doctors that he couldn't lay down at all, and consequently got no sleep.
Finally in Oct. of 2010 a new pulmonologist finally listened to him when he told him he thought it was the outside of his lung, not the inside, so after some tests, sent him to a neurologist, who then diagnosed him with ALS.
They also found he has a bilateral paralyzed diaphragm and is on a BiPap machine with 2% concentrated oxygen, which he only needs when he goes to sleep as his oxygen drops in the 70's, but otherwise is 98 to 99% as he was never a smoker.
We of course did not want to accept this diagnosis and learned that lyme can mimic ms, parkinsons and als, so we tested at IgeneX positive with 4 positive bands and 1 indeterminate, but that wasn't good enough, I wanted to make sure before I put him through anymore then he was already going through, so I insisted they do the Epitope test which is better then 98% that he indeed has lyme.
He also tested positive for Ehrichlia Chaffeenis.
Well there was NOT one doctor in our area, which is Madison, Wisconsin, with our famous University of Wisconsin Hospital & Clinics and the Dean System, still we could not find one doctor who was literate in lyme.
They make you feel like your crazy and grabbing at straws.
He should just take the als diagnosis and deal with it.
Well of course, I would not just deal with it, so we found a lyme doctor 2 hours north of us and started some antibiotics. He just had such a hard time taking pills, making him sick, so he went on IV Ceftriaxone, which I researched and they are having a clinical trial for als and it is also a treatment for lyme, but his first infusion, he developed hives, so we had to stop and start Azithromyicin, along with Doxy, 100mg. twice per day.
I forgot to mention we had to drive 4 1/2 hours north to get the picc line put in by a radiologist who had lyme disease.
He is struggling so much with his breathing while taking the antibiotics, but he still isn't having trouble with his limbs or talking or swallowing.
He is left handed and noticed 4 or 5 years ago, weakness in his left hand and it looks alittle like it is atrophied.
He has also lost 45 to 50 lbs, so is 128 lbs and is 5'61/2" so we are trying to help him eat and build up his muscle loss.
He is a very fussy eater so things have to taste good to him otherwise he will not take it.
He also drinks diet coke, which I have tried to get him off from, with not much luck, he doesn't drink as much as he used to, but can't seem to give it up.
So, I would love to hear from both of you, as to what you each would recommend, as you can imagine,
"Time is of the essence".
Thank you so much for your time in advance, I am very anxious to hear from you.
Dixie
p,s, If anyone has any stories or information on paralyzed diaphragm & lyme, please feel free to email me at: dixieleeo@tds.net
or if you have any information or advice.
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