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

[heapsreal]

From what I have garnered (for what it is worth)
azithromycin
HBOT
Hyperthermia which may just include heating up your own body
NIR hyperthermia treatment "Iratherm"
High salt & high vitamin C
GcMAF and the MAF yoghurts
Marshall Protocol
Low carbohydrate diet)
(and probably some that i have missed)
The Lyme people and Doctors may be able to provide further info

Have heard roxithromycin is probably the best macrolide as it crosses the bbb but isnt mentioned much as not available in the USA .

Beginning of the year i posted a thread/study about a german dr having success with bactrim and roxi for lyme. Which i did for awhile and did help sinuses. But have just been on bactrim alone for sometime now.

currently doing doxycycline with odd flagyl but looking at adding roxi again and tindamax instead of flagyl which makes me feel crap if i use for more than a day.

I wonder with all the abx i have been on could have pushed possible lyme into cyst form??

 

[kungfudao]

Have heard roxithromycin is probably the best macrolide as it crosses the bbb but isnt mentioned much as not available in the USA .

Beginning of the year i posted a thread/study about a german dr having success with bactrim and roxi for lyme. Which i did for awhile and did help sinuses. But have just been on bactrim alone for sometime now.

currently doing doxycycline with odd flagyl but looking at adding roxi again and tindamax instead of flagyl which makes me feel crap if i use for more than a day.

I wonder with all the abx i have been on could have pushed possible lyme into cyst form??

Ya your right, I took it before but not long enough or with the right combo to kill all pleomorphic forms...Alan Greer was a big promoter of that .I spoke with him on the phone once.
Ive got the prescription for the three meds That completely eradicated the Lyme in vivo. Well we'll see what happens in Vitro. I had posted the research paper : Plos one Borrelia eradicated using Daptomycin Cefoperazone and Doxy. All IV or IM Depending on med. Roxy also works well with heat therapies.Some macrolides are recommended to take with Hydroxychloroquine, to change the vacuolar PH balance,Id check with your Doc Hydroxy ,you need to have a special eye test done to make sure that it hasn't caused damaged.

 

[GcMAF Australia]

Have heard roxithromycin is probably the best macrolide as it crosses the bbb but isnt mentioned much as not available in the USA .

Beginning of the year i posted a thread/study about a german dr having success with bactrim and roxi for lyme. Which i did for awhile and did help sinuses. But have just been on bactrim alone for sometime now.

currently doing doxycycline with odd flagyl but looking at adding roxi again and tindamax instead of flagyl which makes me feel crap if i use for more than a day.

I wonder with all the abx i have been on could have pushed possible lyme into cyst form??

Indeed you need to eliminate the cysts. Some use pulsing with the ABX .
It has been a while since I read on this, but I think there are "cyst busters"

 

[kungfudao]

Indeed you need to eliminate the cysts. Some use pulsing with the ABX .
It has been a while since I read on this, but I think there are "cyst busters"

Yes ,Metronidazole ,Tinidazole, Alinia works better with hyperbarics. I usually pulse them 4 days on 3 off and take good probiotics. But this triple combo I'm Starting KILLED ALL PLEOMORPHIC FORMS,in vitro the ONLY combo of FDA APPROVED antibiotics that have been able to achieve that ,Thats HUGE.

 

[kungfudao]

That could be assessed, but even if treating people suffering from chronic symptoms on the basis of symptoms and exposure were shown to lead to better outcomes (and I don't think that we do have evidence that this is the case yet) then that still would not show alternative testing to be of value.

There are additional controversies, uncertainties and difficulties around Lyme, but none of them can serve to show the value of alternative Lyme testing so long as this testing has not been assessed under blinded conditions and shown to have some internal consistency and association with symptoms.

It is not so black and white. People go on antibiotic trials and break out in bulls eye rashes from head to toe.I believe it to be medical malpractice to deny treatment of lyme disease based on two inaccurate mainstream tests without considering all the other factors. That would be denying treatment and ignoring evidence as if it was empirical .

 

[heapsreal]

Lyme gurus seem to have different views but any opinions on doxy and flagyl combo, as i have heard doxy reduces effectiveness of flagyl. Haven't read if some think this is the same with tindamax and doxycycline .

 

[GcMAF Australia]

Lyme gurus seem to have different views but any opinions on doxy and flagyl combo, as i have heard doxy reduces effectiveness of flagyl. Haven't read if some think this is the same with tindamax and doxycycline .

I am no expert, but I beleive they use these as a pulse.
Also some Drs actually measure the Abx to ensure that there is enough in the blood.
@merylg says from memory that azithromycin stays in the body longer that doxy

 

[kungfudao]

Lyme gurus seem to have different views but any opinions on doxy and flagyl combo, as i have heard doxy reduces effectiveness of flagyl. Haven't read if some think this is the same with tindamax and doxycycline .

I hadn't heard that . I have tried many combos ,I'm not crazy about Flagyl ,I like Tindamax better ,and it crosses the BBB better, There's not a whole lot of cyst buster Antibiotics, I've had My best results from Iv Ceftriaxone (gallbladder complications) and IM Bicillin 1.2 mil un x 4 per week with Tindamax preferably over Flagyl. As I said I'm stopping it all to try this 2015 research study -Daptomycin ,Cefoperazone and Doxy...you guys should read the study if you haven't its impressive.I will be the crash test dummy. If ins will pay its $40,000 a month. I'm also going to be treated in a trial, with magnetic induction Hyperthermia, But even Dapto by its self or with a cyst buster I've heard is having good results.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

 

[kungfudao]

I am no expert, but I believe they use these as a pulse.
Also some Drs actually measure the Abx to ensure that there is enough in the blood.
@merylg says from memory that azithromycin stays in the body longer that doxy

I've done Doxy ,Mino, Azithro, Clarithro,Roxithro, Hydroxychloroquine,Bactrim, Alinia, I usually do 3 at a time.a cyst buster,a protein synthesis inhibitor,and a cell wall inhibitor.Benzathine pen...Bactrim or Ceftriaxone which can be done in a push with 30ccs saline .or D5W..of course with the medical disclaimer I'm not a Doctor.

 

[kungfudao]

That could be assessed, but even if treating people suffering from chronic symptoms on the basis of symptoms and exposure were shown to lead to better outcomes (and I don't think that we do have evidence that this is the case yet) then that still would not show alternative testing to be of value.

There are additional controversies, uncertainties and difficulties around Lyme, but none of them can serve to show the value of alternative Lyme testing so long as this testing has not been assessed under blinded conditions and shown to have some internal consistency and association with symptoms.

By the way just so everybody understands could you please define Mainstream testing and Alternative testing

 

[Esther12]

By the way just so everybody understands could you please define Mainstream testing and Alternative testing

Roughly:

mainstream testing: that which has been assessed under-blinded conditions and found to have some internal consistency and an association with a cluster of symptoms.

alternative: no good evidence of value. Tends to class many more people as 'positive' than mainstream testing. Very often used by those doctors who believe that Lyme explains the symptoms of a large percentage of CFS patients.

 

[duncan]

Could one just as rationally say:

Mainstream testing with mainstream thresholds: no good evidence of value; tends to class many more people as 'negative' than other forms of testing; very often used by those doctors who believe that CFS explains the symptoms of a large percentage of Lyme patients ?

 

[Esther12]

Could one just as rationally say:

Mainstream testing with mainstream thresholds: no good evidence of value; tends to class many more people as 'negative' than other forms of testing; very often used by those doctors who believe that CFS explains the symptoms of a large percentage of Lyme patients ?

But there is some good evidence of value from blinded assessment.

 

[duncan]

I cannot seem to understand the value, let alone its evidence. Would you please explain it?

 

[Esther12]

I cannot seem to understand the value, let alone its evidence. Would you please explain it?

It has been shown to have an association with a cluster of symptoms (people who have certain symptoms - bullseye-rash, etc - are more likely to be positive than those who do not) and it has been shown to be internally consistent (a sample that has tested positive once will also test positive again when re-tested).

 

[duncan]

Right. But where is its value?

Let me rephrase that. What can mainstream tests - outside of direct Bb detection through culturing - definitively demonstrate that alternative tests cannot, and why is this significant? How well do these tests apply to all strains or variations of Lyme? What if the symptoms are the wrong symptoms, or only relevant to a certain portion of Lyme sufferers?

Also, what is the value of the thresholds embraced in currently accepted testing, and at what sacrifice?

Too complicated? That's just a taste of issues swirling around Bb diagnostics.

Please just explain its real value.

 

[Valentijn]

But there is some good evidence of value from blinded assessment.

What do you propose to do with the large number of patients who actually do have a Borrelia infection, but test negative? This is somewhere between 30-50% of people with Borrelia.

 

[Esther12]

Right. But where is its value?

Let me rephrase that. What can mainstream tests - outside of direct Bb detection through culturing - definitively demonstrate that alternative tests cannot, and why is this significant? How well do these tests apply to all strains or variations of Lyme? What if the symptoms are the wrong symptoms, or only relevant to a certain portion of Lyme sufferers?

Also, what is the value of the thresholds embraced in currently accepted testing, and at what sacrifice?

Too complicated? That's just a taste of issues swirling around Bb diagnostics.

Please just explain its real value.

There is good evidence that mainstream testing is of some value for showing that someone is more likely to suffer from Lyme. That is of value. I've not kept up to date with the evidence on exactly how good the testing is. It is often claimed to be very reliable for those people who have been infected for more than a few weeks (six?), while those who take a more 'alternative'/non-mainstream/whatever-you-call-it approach to Lyme often claim it is hugely unreliable. These additional controversies cannot mean that mainstream testing is of no value, or that alternative is of any value.

What do you propose to do with the large number of patients who actually do have a Borrelia infection, but test negative? This is somewhere between 30-50% of people with Borrelia.

It would depend upon what evidence there was that they had a borrelia infection. At the moment I think that a lot of people are being told by alternative-Lyme doctors that they do have a borrelia infection when they do not.

 

[Valentijn]

It is often claimed to be very reliable for those people who have been infected for more than a few weeks (six?), while those who take a more 'alternative'/non-mainstream/whatever-you-call-it approach to Lyme often claim it is hugely unreliable.

No. That paper you like because it shows the inaccuracy of Igenex urine tests also shows a false negative rate of 33.3% for the Western Blot. And that's not taking into account the false negative results from the initial IgG/IgM serology test who would not even be allowed to proceed to the 2nd step and get a Western Blot.

It would depend upon what evidence there was that they had a borrelia infection. At the moment I think that a lot of people are being told by alternative-Lyme doctors that they do have a borrelia infection when they do not.

Maybe. But does that mean you leave the mainstream two-tier false-negative patients untreated, and only treat 50-70% of the people who have a Borrelia infection? I really wasn't exaggerating when I said the false negative rate for the mainstream two-tier method is 30-50%.

 

[Esther12]

No. That paper you like because it shows the inaccuracy of Igenex urine tests also shows a false negative rate of 33.3% for the Western Blot. And that's not taking into account the false negative results from the initial IgG/IgM serology test who would not even be allowed to proceed to the 2nd step and get a Western Blot.

It's not that I particularly like that paper, it's that this is the only evidence we have from the blinded assessment of an alternative Lyme test. I often see it claimed that the current mainstream testing is much more reliable than that for those who have been infected for some time.

Maybe. But does that mean you leave the mainstream two-tier false-negative patients untreated, and only treat 50-70% of the people who have a Borrelia infection? I really wasn't exaggerating when I said the false negative rate for the mainstream two-tier method is 30-50%.

I don't think that pointing out the lack of evidence for the value of alternative Lyme testing means that I have any particular insight into how particular patients should be treated. I think that doctors need to be honest with patients about when their recommendations are not supported by any good quality evidence, but that's more a moral than clinical judgement.