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New doctor wants to treat empirically for Lyme, good idea?

Daffodil

Senior Member
Messages
5,875
i dont know if it is the limitations of current genetic sequencing or whatever, but it will be many years before they will be able to conclusively prove that many diseases are caused by intracellular bacteria. it is universally known that sarcoidosis, for example, goes into remission with antibiotics and there are many many papers showing RA and other autoimmune diseases can go into remission with antibitiocs....but there is little incentive for drug companies to perform large scale trials, since there is no money in selling old antibiotics. seems we will be have to be content with trying combination antibiotics and seeing what happens.
 
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GcMAF Australia

Senior Member
Messages
1,027
i dont know if it is the limitations of current genetic sequencing or whatever, but it will be many years before they will be able to conclusively prove that many disease sis caused by intracellular bacteria. it is universally known that sarcoidosis, for example, goes into remission with antibiotics and there are many many papers showing RA and other autoimmune diseases can go into remission with antibitiocs....but there is little incentive for drug companies to perform large scale trials, since there is no money in selling old antibiotics. seems we will be have to be content with trying combination antibiotics and seeing what happens.

Thanks Daffodil.
In fact the original Lyme Disease at the town of Lyme was studied because they had unexplianed Arthritis.

And indeed there are Australians with Sarcoidosis AND Lyme.
Also there are Australians with Breast Cancer AND Lyme
Many cancer people HAVE Lyme as well.

In fact it is now established that bacteria are associated with all major cancers. AND antibiotics can be used to treat cancers.

I hope to present this at the ASMR conference in Adelaide in November.
(I am a researcher with experience in microbiology and genetics, including cancer genetics)
 

GcMAF Australia

Senior Member
Messages
1,027
Exerpts from under our skin web site

Indeed why would NIH try to sensor a retired researcher??

Dr. Burgdorfer
: was the expert in the field and died recently

http://underourskin.com/news/lyme-discoverer-willy-burgdorfer-breaks-silence-heated-controversy

Just as we began filming, there was a pounding on the door, and we found ourselves facing someone who turned out to be a top researcher at the nearby Rocky Mountain Laboratories, a biolevel-4 NIH research facility. Standing on the porch, our uninvited guest said, “I’ve been told that I need to supervise this interview. This comes from the highest levels. There are things that Willy can’t talk about.” We were stunned. After all, Dr. Burgdorfer had been retired from the lab since 1986. We were there to talk to a private citizen, about the history of a very public discovery that had put him on the short list for a Nobel Prize. Earlier that year, the NIH had refused our requests to interview any of their Lyme researchers. What was going on? Why would the NIH want to censor information about the fastest growing bug-borne disease in the United States? Fortunately, our iron-willed film director, Andy Abrahams Wilson, turned the NIH handler away, and what followed was an amazingly candid interview about Lyme disease—its dangers and its controversies.

Dr. Burgdorfer: I most regret that the technology used to diagnose and to even treat Lyme disease wasn’t worked all the way through. It [was based on] only a few results, then published. And later on, people [wanted] to take them back. I think Borrelia burgdorferi is too serious an [infectious] agent to play with, and with many laboratories, the severity of the disease is overlooked. Andy Wilson: What’s the next stage of research? Dr. Burgdorfer: Neurologic manifestations have to be the next stage of research. Also [Borrelia burgdorferi’s] antigenicity. Ecologically, the diversification of Borrelia is tremendous. Because of the spirochete’s ability to change—to change its physiology, to change its “antigenic” structure for instance—a spirochete may be capable of producing disease or not. And one piece of work that needs to be done, that has lately been neglected, is development of the spirochete—whether it transfers [genes via] fission, or whether individual spirochetes have the ability to break into spheres or particles. We don’t know yet how they do it but they do. They go into the lymphocytes, they go into every tissue. Just because we have not seen [them], does not mean that they are not there. Once the immune response is down, are [they] capable of re-entering the bloodstream and producing disease? Andy Wilson: Do you have Lyme? Dr. Burgdorfer: No. I don’t. But I say that cautiously. Because I have been working with Lyme disease ever since 1981. _______ Soon after we turned-off the camera and began packing up our gear, Dr. Burgdorfer told us with a wry smile, “I didn’t tell you everything.”
 
Messages
13,774
I would like to ask a question. Could posters please clarify what/who they mean by 'alternative Doctors' who are saying that M.E/CFS is caused by Lyme?

In Australia I know of probably 6 Doctors, who are traditional doctors, who have found that most of their ME/CFS patients have Borrelia. I am talking about an average of 1-200 patients each and the positive rates would be over 90%.

I suspect that people will have slightly different views on it, and I think it would be difficult to come up with any 'rule', but I'd say that doctors reporting that the majority of CFS patients that they see have Lyme would count according to my view.

No, internal consistency is useless when the results are very often wrong. And I'm not sure I trust the internal consistency, given the methodology used (or rather not used) regarding blinding for the Western Blot portion.

Internal consistency at least indicates that it's a test for something, even if it's not what you think it is. One reason why I think that this is an important thing for alternative Lyme tests is that it doesn't really matter that much if they're identifying Lyme: if they're reliably identifying any infection which is common in CFS, and yet rare in a healthy population, that would be an important finding. At the moment we don't even have good evidence of that, despite claims having been made about it by alternative Lyme doctors for decades.
 
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GcMAF Australia

Senior Member
Messages
1,027
One of the initial studies on Borrelia infections states that they had arthritis,
Up to 10% of children in some areas had Borrelia, this is presumably in one year. So in several years the infection rate could be nearly 100%
Another publication talks about neurological and cardiac implications of Borrelia infection.
My cousin died recently from what I suspect was Lyme Disease< I am aware of many Lyme Deaths in Australia. My br in law is a cardiac surgeon and recently had 5 bypasses, but he refuses to even consider the possiblity of infection!!
A neighbour went to hospital for a "safe" heart operation, but 10 days later she was dead due to an infection!!
After requesting bacterial tests a relative is still waiting 9 months for the results.
The hospitals here are useless, I have countless stories of negligence
 
Messages
15,786
Internal consistency at least indicates that it's a test for something, even if it's not what you think it is. One reason why I think that this is an important thing for alternative Lyme tests is that it doesn't really matter that much if they're identifying Lyme: if they're reliably identifying any infection which is common in CFS, and yet rare in a healthy population, that would be an important finding.
True. But in the study under discussion, I'm not sure I trust their finding of internal consistency. They just don't say nearly enough about their methodology, especially regarding blinding and determining if a band is positive or negative. I suppose in this particular case, it also would have been nice if they had included the actual visual images of the results.
 

justy

Donate Advocate Demonstrate
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5,524
Location
U.K
I suspect that people will have slightly different views on it, and I think it would be difficult to come up with any 'rule', but I'd say that doctors reporting that the majority of CFS patients that they see have Lyme would count according to my view.

I'm sorry but this doesn't really equate with what most people think of as an 'alternative Dr'. To my mind an alternative Dr is one who uses alternative medicine such as acupuncture or herbs or homeopathy, or like Dr Myhill uses supplements and diets, rather than allopathic/traditional medicine.

In your definition ANY Dr, whatever their credentials and however they operate and treat patients is classified as 'alternative' if they find their patients are suffering from a particular infection/illness. Seems a strange way of identifying 'alternative Dr's' Alternative to what then I wonder?

In that case do you classify Dr De Meirleir as an 'alternative Dr'? what about Dr Horowitz? and Dr Jemsek? all MEDICAL Dr's who do not use alternative or complementary medicine but who find most of their patients have late stage, undiagnosed, misdiagnosed as CFS Lyme?

One FB group I am a member of has just done a poll and almost everyone in the group (which has thousands of members) says that they were initially misdiagnosed with M.E/CFS. Lots of the people in the group who are able to afford private treatment are improving or recovering when treating Lyme.
 

GcMAF Australia

Senior Member
Messages
1,027
One FB group I am a member of has just done a poll and almost everyone in the group (which has thousands of members) says that they were initially misdiagnosed with M.E/CFS. Lots of the people in the group who are able to afford private treatment are improving or recovering when treating Lyme.
This is true in Australia, and the Lyme FB pages in australia bear this out
 

MadeleineKM

Senior Member
Messages
205

In Norway the PCR test are considered as the "golden standard" test, a positive PCR and they never claims that theres no Borrelia precent, even though our health directory understands very little that Borrelia excists they always admit the diagnosis on a positive PCR. Telling that the PCR can be false positive for the spirochete is like going backwards by my opinion but I often make mistakes. In Norway after getting the new priminister two new projects about Borrelia has been started, one about testing and one about neuro borreliosis and genes to try finding out why some get ill and some dont. This has became a big problem and a epidemi in Norway, sounds similar in Australia
Absolutely MadelaineKM
Interesting projects there do you have some more information??
I failed the quoting again but hope you see this, here is a link with info about one of the studies in Norwegian though but it might help to copy paste and use google translate :) This is a big step forward for us in Norway if these researchers are to trust on with the results, last time lots of moneys where use on research for borrelia they where used to see how its affects the sheep! http://www.helseforsk.no/rhf/?page_id=469
 

xrunner

Senior Member
Messages
843
Location
Surrey
In Norway the PCR test are considered as the "golden standard" test, a positive PCR and they never claims that theres no Borrelia precent, even though our health directory understands very little that Borrelia excists they always admit the diagnosis on a positive PCR.
That's the case anywhere in the real world. A positive Bb PCR always means a positive diagnosis whether the Dr is a "sceptic" or not.
 

duncan

Senior Member
Messages
2,240
@xrunner , that is not completely accurate. Positive Bb PCRs have been explained away as only indicative of remnants, not viable spirochetes.

But that's a tough stance to take, agreed.

The biggest problem with the PCR is its low sensitivity. Even if you've a raging case of Bb, odds are your PCR will turn up negative.

One's chances with a PCR are better than trying to culture, but they are both long shots.
 
Messages
13,774
True. But in the study under discussion, I'm not sure I trust their finding of internal consistency. They just don't say nearly enough about their methodology, especially regarding blinding and determining if a band is positive or negative. I suppose in this particular case, it also would have been nice if they had included the actual visual images of the results.

Is that the old one or the new one? The old paper I'd only use to say showed that the IgeneX urine test was dodgy, rather than to say anything about the mainstream testing. The new one sounded like it did a worthwhile job of showing internal consistency.

In your definition ANY Dr, whatever their credentials and however they operate and treat patients is classified as 'alternative' if they find their patients are suffering from a particular infection/illness. Seems a strange way of identifying 'alternative Dr's' Alternative to what then I wonder?

I agree, it's a weird one. The terminology of 'mainstream' and 'alternative' is a bit loose and hazy, but I think that it is still useful to be able to talk about an 'alternative Lyme' group, even if defining the boundaries of that group is difficult.

In that case do you classify Dr De Meirleir as an 'alternative Dr'? what about Dr Horowitz? and Dr Jemsek? all MEDICAL Dr's who do not use alternative or complementary medicine but who find most of their patients have late stage, undiagnosed, misdiagnosed as CFS Lyme?

One FB group I am a member of has just done a poll and almost everyone in the group (which has thousands of members) says that they were initially misdiagnosed with M.E/CFS. Lots of the people in the group who are able to afford private treatment are improving or recovering when treating Lyme.

I don't know much about these individual doctors, but if they report that "most of their patients have late stage, undiagnosed, misdiagnosed as CFS Lyme" then I would count them as being part of the 'alternative Lyme' group, but with an awareness of the limitations of this label. (I could make a joke about my lack of a reliable test here - I'm doing my best to explain my partial knowledge and act with informed consent though!)

Really, if a doctor is selling a blood test which is positive for most CFS patients but few healthy controls, they need to be assessing that under blinded conditions and then publishing their results.
 

justy

Donate Advocate Demonstrate
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5,524
Location
U.K
Really, if a doctor is selling a blood test which is positive for most CFS patients but few healthy controls, they need to be assessing that under blinded conditions and then publishing their results.

or they could just get on with treating really sick people and seeing the improvements in their health they get. Most of these Drs are inundated with patients.

The Drs don't sell the tests, the labs do, and the Drs choose which ones they feel are the most useful/realiable according to the information they have - these Drs have VERY wide expertise in these areas.
 
Messages
13,774
or they could just get on with treating really sick people and seeing the improvements in their health they get. Most of these Drs are inundated with patients.

The Drs don't sell the tests, the labs do, and the Drs choose which ones they feel are the most useful/realiable according to the information they have - these Drs have VERY wide expertise in these areas.

I think that the labs do have a responsibility to do this sort of work, but also, if doctors are recommending testing that does not even have good evidence of internal consistency, then that's a problem.

There's been a long history of doctors claiming without good evidence to have treatments that help people, but these treatments have then been shown to be worthless when properly assessed. I do worry that the poor way CFS is often treated by mainstream medicine means that patients can end up being pushed towards alternative approaches that are more expensive but have no more evidence of efficacy.

Really, all I want is for patients to be provided with information about what the evidence currently shows before they're asked to make decisions on how they spend their money and their time. When there isn't good evidence for the value of certain testing and treatment, people should be informed of this rather than have doctor's reassure them with claims of their expertise.
 
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GcMAF Australia

Senior Member
Messages
1,027
@xrunner , that is not completely accurate. Positive Bb PCRs have been explained away as only indicative of remnants, not viable spirochetes.

But that's a tough stance to take, agreed.

The biggest problem with the PCR is its low sensitivity. Even if you've a raging case of Bb, odds are your PCR will turn up negative.

One's chances with a PCR are better than trying to culture, but they are both long shots.
I think in Australia that the Positive rate is
46% with serology tests
and about 25% with PCR
and so yes there are some differences
and probably several reasons for the differences
or they could just get on with treating really sick people and seeing the improvements in their health they get. Most of these Drs are inundated with patients.

The Drs don't sell the tests, the labs do, and the Drs choose which ones they feel are the most useful/realiable according to the information they have - these Drs have VERY wide expertise in these areas.
Abso Bloody lutely
The whole point is the people who are seeing the doctors
 

GcMAF Australia

Senior Member
Messages
1,027
My computer´s been down, what did I miss?

Oh, nothing...

I think we will have to wait for more research to be published before people like Esther are convinced and we can say, I told you so!
I spend most of my time helping people with Lyme>
and could not agree more
 

kungfudao

Senior Member
Messages
137
Location
Los Angeles
Sounds bad to me.



That claim is just not supported by the evidence. Personally, I'd leave this doctor. Good luck.

Standard tests are only 30%, and IgeneX is only 90% accurate. So a negative lyme test is meaningless.

Does this mean everyone keeps testing until it's positive? At some point you empirically treat it?

He wants me to start with Doxycycline or Minocycline.
Lyme disease is a clinical diagnosis, the blood test is only a extra tool to be used. They should also be looking for other markers like the CD-57 , Vitamin D levels, multi systemic symptoms,Nervous system involvement, Panic disorder, Fatigue Coinfections like Babesiosis, As one doctor said "it is very naive to think that an arachnid that drinks blood would only carry one disease". The process of diagnosing B.B. is a process of elimination.The 2 tier testing is a train wreck that has messed up so many lives. First off there is over 100 strains of Borrelia just in the US. The standard testing is of the b31 strain, (the spirochete that never lived in a human body). There is good labs like advanced laboratory services which culture the live Bacteria, it got poo ppoo'd on by the cdc because of claims that they were cross contaminating.This came about because they cultured a borrelia species not known to exist in the US. This was the work of Micro Biologist Eva Sapi. After they cultured ticks from that region they found that in fact some of the tics did carrie that species. The damage had been done and no apologies were made by the cdc, just as no apologies were made when they first claimed 30,000 cases per year and then jumped it up to 300,000. This was an example of the efficacy of the two tier testing. there is new research out disproving the cdc's stronghold-the Klempner study, the new study published in PLOS-1 (Embers study with mkau monkeys) was supposed to be a control for the Klempner study, but ironically took ten years longer to publish???
Another study that was just published called:Eradication of Borrelia Burgdorferi achieved using Daptomycin Cefoperazone and Doxycycline, would be a great tool to show your Doctor if he is not aware.
To answer your Question, Based on my opinion, Due to having the disease myself, would be to consider a few things like:did this person have a crash, are they desperately ill and or in a state of dilution or panic.Are their symptom progressing fast. If yes than I would treat them as long as this doctor is going to give them longer term antibiotics. Have they been treated before. Were they just bitten by a tic. based on the new research the Bacteria IS PLEOMORPHIC and CHRONIC, the study analyses almost all the FDA approved antibiotics either in 1 2 or 3 drug combos, Doxycycline as a monotherapy was shown to only be effective in the killing of the spirochete to some degree, and caused the bacteria to morph into other variant forms. At 7days nearly ineffective and at 10 days the bacteria had morphed into microcolonies (Biofilm)and had very little effect. This was in vitro, but in any stretch of the imagination I personally don't see (When we know it infects humans) that it would not colonize in the human body as it did in a petri dish. Between these two studied it completely dismantles the position of the CCD and The Infectious Disease Society of America which is is really run by a handful of people with conflicts of interest.There are hundreds of studies on animals many showing persistent infections after antibiotics (placebo doesnt work on animals).Its hard to say if your son should go on antibiotics. I think you need to analyse the doctor...does he have a short term 3 week plan or is he in it for the long haul .If he doesn't believe in Chronic Borreliosis I would find one that does. Respectfully good luck.