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

[GcMAF Australia]

All the best.
I am sorry that you are in this condition WillowJ.

If your tests are negative, I would go by other things. Did you have a known tick bite?
It is not necessary to have a known tick bite to be infected with Lyme, Many people do not remember any bites, and there are many other ways to contract Lyme.

Do you have clinical signs and symptoms that are better explained by Lyme than by other things? If the answer to these is no, I'm not sure you have a case for trying to treat Lyme.
The signs of Lyme are numerous maybe 200 or so and this whole clinical diagnosis thing is erroneous

The treatment with antibiotics is not straightforward and so any deduction from 1 case is not necessarily helpful.
Having a good doctor is a difficult question? If your doctor has not tested you properly for Lyme then the doctor is NOT a good doctor.

 

[GcMAF Australia]

From Dr X who -

found, that chronic Borreliosis occurs in 5-6%of random general practice [=family practice] patients
SOME people become 100% better. The longer they have been sick the less are getting better with no problems, but still some.
About 60% progressing with no problems, another 30% with some difficulties and changes.
This is based on limited experience with some 7-800 patients.

 

[GcMAF Australia]

I am looking into HBOT as a possible effective treatment.
There is also the Marshall Protocol and Chronic Inflammation therapy
Yes i know some people tried MP but from what I gather it was not carried out properly

 

[kungfudao]

There's no evidence to suggest that any alternative testing is more accurate and reliable than mainstream testing, and there was an old double-blind study of some alternative testing IgeneX was providing that found it to be unreliable.

There are so many people out there claiming to have effective treatment for you to spend money on, that it really is worth only putting your time and money into things that have a good evidence base imo.

Unfortunately, that rules out almost everything for CFS.

There are lots of people who get accurate and meaningful exclusionary diagnoses, but that can be a lot of work and often requires some dumb luck.

Personally, I think that money donated to good quality research is more useful than money spent on alternative treatments. Wish I had a quick and easy solution for you.

I am looking into HBOT as a possible effective treatment.
There is also the Marshall Protocol and Chronic Inflammation therapy
Yes i know some people tried MP but from what I gather it was not carried out properly

I had great improvements from HBO, Auto Memo,and Ultraviolet Blood Irradiation, I am very Exited about this New Research : Complete eradication of Borrelia using Daptomycin, Cefoperazone and Doxy ...It answers sooo many Questions.
Any doubters should read this.(Esther)
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

 

[GcMAF Australia]

I had great improvements from HBO, Auto Memo,and Ultraviolet Blood Irradiation, I am very Exited about this New Research : Complete eradication of Borrelia using Daptomycin, Cefoperazone and Doxy ...It answers sooo many Questions.
Any doubters should read this.(Esther)
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

There are a number of protocols and strategies that seem promising.
As noted in the paper there is some problem getting into some areas of the body such as bone structures.
HBO may need to be 2 atmospheric.
Some inject ozone into the bone. etc etc

 

[kungfudao]

There are a number of protocols and strategies that seem promising.
As noted in the paper there is some problem getting into some areas of the body such as bone structures.
HBO may need to be 2 atmospheric.
Some inject ozone into the bone. etc etc

I did about 50 deep dives equivalent to about 48 ft if I remember right, I wish I had done it with Antibiotics. I was doing soo much better for some time. I have tried many things, What triggered my crash in 2005 (Horrific) was a doctor putting me on prednisone...I have learned so much since then.

 

[GcMAF Australia]

I did about 50 deep dives equivalent to about 48 ft if I remember right, I wish I had done it with Antibiotics. I was doing soo much better for some time. I have tried many things, What triggered my crash in 2005 (Horrific) was a doctor putting me on prednisone...I have learned so much since then.

which country do you live in?

 

[kungfudao]

which country do you live in?

US

 

[penders]

when you say "mainstream" tests Valentijn and Esther12 do you mean the tests that are done by the NHS? or a US lab? I live in the UK where apparently the NHS test is really very poor.Dr mYhill now recommends (with reservations I think) the Elispot LTT as being the better test although none of them are 100% accurate. But if you have been very ill for a long time it's surely better to have SOME test done rather than say that none of them can be empirically proven 100% so don't use them and just get on without treatment? I had the NHS test done 3 times in 15yrs and assumed that I was negative but was informed that the test is rubbish. I didn't realise that testing was so complicated an issue...and the treatment even more so! flip!! very informative reading everyone's posts

 

[Daffodil]

which medications contain Daptomycin or Cefoperazone? I have never heard of these medications..?

 

[duncan]

@Daffodil , I am reluctant to answer a question you intended for someone else, but maybe I can help.

Kim Lewis (Northeastern U) and Ying Zhang (Johns Hopkins) have both done research into the phenomenon of persisters. They demonstrated that after conventional IDSA-recommended treatment for Lyme, certain Bb cells persisted in vitro. They characterized these cells, as well.

They also tried different treatments in an effort to eradicate Bb persisters, especially Zhang. Both of those two drugs you inquired about were used (Daptomycin, which I think is often associated with cancer treatments, is very $). Zhang also showed that they could kill off persisters with a pulsing therapy of Rocephin. Again, this was in vitro.

The takeaway, though, is that it has been demonstrated by two world-class researchers - one unaffiliated with the Lyme world - that IDSA-recommended treatments can fail to eradicate Bb. That is very big news - or at least, it should be.

 

[Daffodil]

@duncan thank you! that is big news.

 

[Esther12]

when you say "mainstream" tests Valentijn and Esther12 do you mean the tests that are done by the NHS? or a US lab? I live in the UK where apparently the NHS test is really very poor.Dr mYhill now recommends (with reservations I think) the Elispot LTT as being the better test although none of them are 100% accurate. But if you have been very ill for a long time it's surely better to have SOME test done rather than say that none of them can be empirically proven 100% so don't use them and just get on without treatment? I had the NHS test done 3 times in 15yrs and assumed that I was negative but was informed that the test is rubbish. I didn't realise that testing was so complicated an issue...and the treatment even more so! flip!! very informative reading everyone's posts

I would count the NHS test as 'mainstream', and I also have concerns about Dr Myhill's advice more generally. She does seem to be willing to go beyond what is supported by the evidence, and also her 'treatment' regime was very demanding for patients, with very little evidence that it truly helped people.

Personally, I think that it is better to go on without any treatment than to pursue treatments that do not have good evidence of value. Better to put one's time and money into trying to improve things for the future than just hope for the best with the things on offer now imo. That is just my judgement and preference though, and you may have different preferences.

I have seen a lot of people pour a lot of time, money and effort into things that have done them no good, and to me, this seems like a real waste of human potential. But also, I am desperate to recover my health, and can understand how that desperation may lead to people doing things that aren't what I would do.

I do think it's important that doctors are clear with their patients about when there is no good evidence for the value of particular testing/treatments, so that if patients do decide to go ahead they are doing so in a genuinely informed manner rather than just trusting the expertise of their doctor.

Wish I had a more positive answer for you - good luck.

Any doubters should read this.(Esther)
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

I'm more interested in evidence for the value of alternative/non-mainstream/whatever-you-want-to-call-it testing.

This site searches most of the science papers
http://www.ncbi.nlm.nih.gov/pubmed
If you type in borrelia sera human there are 1418 results
Of course sorting through these takes time
you can also select the free copies option
here are some

Yeah, I know how to search pubmed, it's just that the results I found tended to be for limited geographic areas for which prevalence varies massively. Also prevalence of anti-bodies is not the same as evidence that "people are carrying Lyme deep within their body just waiting to pop out when convenient."

 

[msf]

´Personally, I think that it is better to go on without any treatment than to pursue treatments that do not have good evidence of value. Better to put one's time and money into trying to improve things for the future than just hope for the best with the things on offer now imo. That is just my judgement and preference though, and you may have different preferences.´

To quote the Opie and Anthony show, we HEARD you!

 

[GcMAF Australia]

´Personally, I think that it is better to go on without any treatment than to pursue treatments that do not have good evidence of value. Better to put one's time and money into trying to improve things for the future than just hope for the best with the things on offer now imo. That is just my judgement and preference though, and you may have different preferences.´

To quote the Opie and Anthony show, we HEARD you!

I have seen so many people make progress
I would be using Lyme groups and not necessary PR
I only came back to PR to help Tania

 

[GcMAF Australia]

I have seen a lot of people pour a lot of time, money and effort into things that have done them no good, and to me, this seems like a real waste of human potential. But also, I am desperate to recover my health, and can understand how that desperation may lead to people doing things that aren't what I would do.
Yeah, I know how to search pubmed, it's just that the results I found tended to be for limited geographic areas for which prevalence varies massively. Also prevalence of anti-bodies is not the same as evidence that "people are carrying Lyme deep within their body just waiting to pop out when convenient."

True there has been a lot of money and time wasted.
Mind you a lot of my neighbours have spent a lot on traditional doctors and they have ended up dead.
I have seen so much junk science by doctors it does not bear thinking about.
I cannot help the limitations of the publication system.
Maybe you should think of the chronic carriers of TB and other diseases etc etc, Why would Lyme be any different??

 

[GracieJ]

If the Lyme clinical definition fits, applied by a doctor well experienced in seeing true clinical Lyme disease, and the tests are not very good or reliable, and a trial of appropriate antibiotics brings substantial change, then I would be inclined to believe Lyme is part of the individual's diagnostic picture.

But I still do not understand the sudden bandwagon thinking that all ME/CFS patients must have Lyme. I just do not buy it. If the tests are as unreliable as I keep reading they are, how can anyone be sure of the percentages of any group actually truly having Lyme disease?

If I went to a doctor today who read over my history, and immediately went to the Lyme discussion without a lot of other lab work being done, I would scream and run. How much of a pet diagnosis is this becoming?

Huge jump here to a conclusion that may or may not be true. I must say I was tired from day one hearing that it is absolutely true. Not proven yet, and I do not waste my time listening to anyone who insists it is true. If it turns out to be that way, great, but, you know... show me the money on this one.

And... back to @drob31 's original query... Did you decide to do the treatment or not? I would like to hear more about your decision and thinking.

 

[GcMAF Australia]

If the Lyme clinical definition fits, applied by a doctor well experienced in seeing true clinical Lyme disease, and the tests are not very good or reliable, and a trial of appropriate antibiotics brings substantial change, then I would be inclined to believe Lyme is part of the individual's diagnostic picture.

But I still do not understand the sudden bandwagon thinking that all ME/CFS patients must have Lyme. I just do not buy it. If the tests are as unreliable as I keep reading they are, how can anyone be sure of the percentages of any group actually truly having Lyme disease?

If I went to a doctor today who read over my history, and immediately went to the Lyme discussion without a lot of other lab work being done, I would scream and run. How much of a pet diagnosis is this becoming?

Huge jump here to a conclusion that may or may not be true. I must say I was tired from day one hearing that it is absolutely true. Not proven yet, and I do not waste my time listening to anyone who insists it is true. If it turns out to be that way, great, but, you know... show me the money on this one.

And... back to @drob31 's original query... Did you decide to do the treatment or not? I would like to hear more about your decision and thinking.

Maybe MerylG can help with this one.
Just so many getting Diagnosed and many improving, including many Australians
@merylg

 

[GcMAF Australia]

There are just so many on PR being diagnosed, maybe ask Sushi for her opinion
or Daffodil

 

[GcMAF Australia]

maybe ask the many australians who have been diagnosed by our testing regime,
many from PR
many showing significant improvements