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

[Sushi]

I thought the original topic was,new doctor Wants to treat Empirically for lyme ,and anything relevant to that. I asked a Question relevant to that.

Bolding mine.

This is how a thread gets confusing and off-topic. It is better to start another thread for the tangential subjects raised by the original topic. This thread was, after all, started by a patient who wanted advice on whether to follow his doctor's recommendation and treat Lyme empirically. The original poster's question got lost in the shuffle as members got diverted to other "relevant" topics.

So, new topic, new thread, and things will work better.

 

[kungfudao]

Bolding mine.

This is how a thread gets confusing and off-topic. It is better to start another thread for the tangential subjects raised by the original topic. This thread was, after all, started by a patient who wanted advice on whether to follow his doctor's recommendation and treat Lyme empirically. The original poster's question got lost in the shuffle as members got diverted to other "relevant" topics.

So, new topic, new thread, and things will work better.

I think that every thing I have posted and many other people is relevant to treating lyme empirically. In Fact I cant think of any thing more relevant than testing and treating.The original poster chimed in at one point and said he was still here ,just sitting back taking it all in. I think there has been a great discussion and hopefully has answered many questions for the original poster. I do agree that it is a lot of info, but very relevant and has built up to a level of truth and education.

 

[Sushi]

I think there has been a great discussion and hopefully has answered many questions for the original poster.

But it can get confusing for those who want to search for the various topics discussed, using a search engine. Much easier to find in separate threads. Note: it is easy to put in links to discussions on different threads if you want to keep them closely related.

 

[kungfudao]

But it can get confusing for those who want to search for the various topics discussed, using a search engine. Much easier to find in separate threads. Note: it is easy to put in links to discussions on different threads if you want to keep them closely related.

Im sure this will lead to new topics,thanks for the info. I am interested to see the replies.Research was being questioned, So I supplied research backing the position of many people. Respectfully

 

[heapsreal]

Most threads once more than 2 pages long are totally way off compated to the topic of the thread. Generally ignore most threads mire than two pages which i think most do. This thread just seems to be a pissing contest??

 

[duncan]

"Never walk away from a pissing contest." Sun Tzu, The Art of War, cir 500 BC

"Always walk away from a pissing contest." Mahatma Gandhi, Calcutta, 1935

"Don't eat the yellow snow." Frank Zappa, 1974

 

[GcMAF Australia]

"Never walk away from a pissing contest." Sun Tzu, The Art of War, cir 500 BC
"Always walk away from a pissing contest." Mahatma Gandhi, Calcutta, 1935
"Don't eat the yellow snow." Frank Zappa, 1974

Actually Sun TZU never spoke english
What he said was
切勿从蹲便器比赛走开
and his name was
孙子兵法
Which means Sunny Jim
AND he suffered from undiagnosed Lyme Disease which made him somewhat cross
and he went around venting his anger

and Gahadi said
नेवर वाक अवे फ्रॉम अ पिस्सिंग कांटेस्ट

 

[GcMAF Australia]

Here is the Wikipedia text on Lyme in the UK


In the United Kingdom the number of laboratory confirmed cases of Lyme disease has been rising steadily since voluntary reporting was introduced in 1986[155] when 68 cases were recorded in the UK and Republic of Ireland combined.[156] In the UK there were 23 confirmed cases in 1988 and 19 in 1990,[157] but 973 in 2009[155] and 953 in 2010.[158] Provisional figures for the first 3 quarters of 2011 show a 26% increase on the same period in 2010.[159]

It is thought, however, that the actual number of cases is significantly higher than suggested by the above figures, with the UK's Health Protection Agency estimating that there are between 2,000 and 3,000 cases per year,[158] (with an average of around 15% of the infections acquired overseas[155]), while Dr Darrel Ho-Yen, Director of the Scottish Toxoplasma Reference Laboratory and National Lyme Disease Testing Service, believes that the number of confirmed cases should be multiplied by 10 "to take account of wrongly diagnosed cases, tests giving false results, sufferers who weren't tested, people who are infected but not showing symptoms, failures to notify and infected individuals who don't consult a doctor."[160][161]

Despite Lyme disease (Borrelia burgdorferi infection) being a notifiable disease in Scotland[162] since January 1990[163] which should therefore be reported on the basis of clinical suspicion, it is believed that many GPs are unaware of the requirement.[164] Mandatory reporting, limited to laboratory test results only, was introduced throughout the UK in October 2010, under the Health Protection (Notification) Regulations 2010.[155]

Although there is a greater incidence of Lyme disease in the New Forest, Salisbury Plain, Exmoor, the South Downs, parts of Wiltshire and Berkshire, Thetford Forest[165] and the West coast and islands of Scotland[166] infected ticks are widespread, and can even be found in the parks of London.[157][167] A 1989 report found that 25% of forestry workers in the New Forest were seropositive, as were between 2% and 4-5% of the general local population of the area.[168][169]

Tests on pet dogs, carried out throughout the country in 2009 indicated that around 2.5% of ticks in the UK may be infected, considerably higher than previously thought.[170][171] It is thought that global warming may lead to an increase in tick activity in the future, as well as an increase in the amount of time that people spend in public parks, thus increasing the risk of infection.[172]

 

[GcMAF Australia]

Clinical features of 705 Borrelia burgdorferi seropositive patients in an endemic area of northern Italy.
http://www.ncbi.nlm.nih.gov/pubmed/24550705

Seven hundred and five patients met the inclusion criteria, 363 males and 342 females.

EM was the most common manifestation and it has been detected in 437 patients (61.99%). There was neither gender difference (M : F = 215 : 222) nor age difference. EM has been found during the visit in 319 patients and it was reported by 118 subjects as an history fact. It appeared from 3 to 25 days after the tick bite (average: after 12 days). Other classical cutaneous manifestations of LB included 58 cases of multiple EM (8.23%), 7 LABC (1%), and 18 ACA (2.55%). Atypical cutaneous manifestations, that is, clinical features not surely linked to LB, were 16 (2.27%), in details: 8 cases of morphoea, 2 Raynaud’s phenomenon, 1 lichen sclerosus and atrophicus, 1 pityriasis lichenoides, 1 Gilbert’s pityriasis rosea, 1 urticaria, 1 anetoderma, and 1 erythema nodosum.

The musculoskeletal system was involved in 511 patients (72.48%): 262 out of 511 presented arthralgias or acute arthritis; they were 119 men and 143 women; 88 had a single episode whereas 174 suffered from several attacks. The evolution to chronic arthritis was seen in 22 cases (8% among the patients with arthralgias/acute arthritis). Muscular hypotonia and/or hypotrophy was observed in 41 patients (5.81%).

Four hundred and sixty patients presented a neurological involvement. Two patients reported Bannwarth’s syndrome, 3 acute encephalopathy and 1 chronic encephalopathy. Two hundred and ninety-three patients (41.56%), 127 males and 166 females, reported cephalea, dizziness, memory and concentration problems, irritability, emotional lability, and sleepiness. As far as the peripheral nervous system is concerned, 161 patients (22.84%) reported paresthesias (115 cases), sensitiveness disorders (47 patients), and motion functionality disorders (19 cases). Out of these 161 patients, 74 suffered from neuritis, polyneuritis, meningoradiculitis and peripheral nerves paralysis, in particular there were 12 cases of the seventh cranial nerve paralysis.

Flu-like symptoms such as fever, arthromyalgia and headache preceded or accompanied or were the only clinical feature in 119 (16.88%) patients. Fever was the only symptom in 11 patients (1.56%) while in 165 (23.4%) cases was accompanied by other manifestations. A reactive regional or generalized lymphadenopathy was recorded in 75 patients (10.64%).

Psychiatric symptoms have been observed in 37 patients (5.25%), 22 men and 15 women. There were 21 cases of anxiety, 10 cases of depression and 6 complex syndromes characterised by panic attacks and phobias.

An intrinsic ocular disease or a disturb deriving from the neuromuscular involvement of the eye has been observed in 71 patients (10.07%), 25 males and 46 females: 28 cases of conjunctivitis, 7 cases of photophobia, 13 cases of visual impairment, 11 of bulbar pain, 4 of diplopia, 1 case of hemianopsia, 1 of orbital muscle tremor, 3 cases of lacrimation and burning and 3 of orbital oedema.

In 57 subjects (8.08%), 26 men and 31 women, there was an involvement of the cardio-vascular system: 14 patients suffered from tachycardia, 3 from bradycardia, and 13 from palpitations. Twenty-four patients presented with the acute onset of varying degrees of intermittent atrioventricular heart block, symptomatic or detected by the ECG. A case of complete atrioventricular block required the implant of a pacemaker. One patient referred angina and 2 patients suffered from a myocarditis.

An involvement of the liver was observed in 41 patients of this survey (5.81) who reported specific alterations of the cytonecrosis enzymes.

With the purpose of better investigating the severity spectrum of LB, an analysis of the summation of the number of symptoms per patient was made. Two hundred and forty-eight (35.1%) patients reported only 1 manifestation. Two different symptoms were observed in 251 (35.6%) patients, 3 clinical features were recorded in 120 (17.0%) subjects, and more than three clinical manifestations assignable to LB were reported for 86 (12.1%) cases.

 

[GcMAF Australia]

http://www.ncbi.nlm.nih.gov/pubmed/25531140


Emerg Infect Dis. 2015 Jan;21(1):107-10. doi: 10.3201/eid2101.140009.
Antibodies against Borrelia burgdorferi sensu lato among Adults, Germany, 2008-2011.

Abstract

To assess Borrelia burgdorferi sensu lato (the cause of Lyme borreliosis) seropositivity in Germany, we tested serum samples from health survey (2008-2011) participants. Seroprevalence was 5.8% among women and 13.0% among men; infection risk was highest among persons >60 years of age. Public health interventions, including education about risk factors and preventive measures, are needed.

 

[kungfudao]

Most threads once more than 2 pages long are totally way off compared to the topic of the thread. Generally ignore most threads mire than two pages which i think most do. This thread just seems to be a pissing contest??

Someone had said that I had put a post without supplying references. So as redundant as it is I posted the references as I was instructed to... yes there was about a hundred or so references. But I shouldn't post the ILADS Position without references,right.And ILADS position is relevant to the topic in every sense. The opposing views were CDC IDSA views. Which is very specifically in every way about the treatment or non treatment of lyme disease now its out in the open, maybe thats exactly what it needed, since thousands of people are dying or living a life of hell because of these bogus guidelines.The facts have been laid out ,whats your take on the facts.

 

[kungfudao]

Entirely ignoring a group of tests pretty much can be interpreted as giving them a green light to do as they please - especially when I repeatedly suggested both mainstream tests and alternative tests be subjected to the same scientific protocol rigor. Wasn't it your primary contention recently that only alternative tests deserve scrutiny, and a specific type of scrutiny relative to blinded testing? When I suggested all tests by every vested or potential diagnostic entity be subjected to the same standards and demands, you seemed to balk.

Hey. Everybody can read what has transpired. They can interpret your position without my interference or influence, @Esther12 .

Duncan You have made one educated remark after another. I respect you for that.

 

[heapsreal]

Someone had said that I had put a post without supplying references. So as redundant as it is I posted the references as I was instructed to... yes there was about a hundred or so references. But I shouldn't post the ILADS Position without references,right.And ILADS position is relevant to the topic in every sense. The opposing views were CDC IDSA views. Which is very specifically in every way about the treatment or non treatment of lyme disease now its out in the open, maybe thats exactly what it needed, since thousands of people are dying or living a life of hell because of these bogus guidelines.The facts have been laid out ,whats your take on the facts.

I just occasionally check on this thread to see what people may be doing empirically to treat lyme. I dont have an opinion on testing as i dont really have access to proper lyme testing.

To me it seems cheaper and more accurate to do a treatment trial than worry about testing with all the politics involved and it just doesn't seem black and white ?

sorry I just don't have the inclination to try and understand the lyme testing .

 

[GcMAF Australia]

I just occasionally check on this thread to see what people may be doing empirically to treat lyme. I dont have an opinion on testing as i dont really have access to proper lyme testing.

To me it seems cheaper and more accurate to do a treatment trial than worry about testing with all the politics involved and it just doesn't seem black and white ?

sorry I just don't have the inclination to try and understand the lyme testing .

I think this was the original point of this thread
I find the Australian web sites and Australian Lyme facebook sites better options for discussions and treatments.
There have been a number of people get a lot better when they have followed some of the treatments mentioned,
although it depends on the person.
These include a number of Australians on PR
Just about most of the Australians when tested using tests that are not the CDC two tier test then test positive with other tests and then a lot get better.
Also they are more active in getting public awareness in Australia
regards

 

[heapsreal]

I think this was the original point of this thread
I find the Australian web sites and Australian Lyme facebook sites better options for discussions and treatments.
There have been a number of people get a lot better when they have followed some of the treatments mentioned,
although it depends on the person.
These include a number of Australians on PR
Just about most of the Australians when tested using tests that are not the CDC two tier test then test positive with other tests and then a lot get better.
Also they are more active in getting public awareness in Australia
regards

I have been on some type of abx most of the time and feel better for , also with avs. So wouldn't suprise me if I had bacterial and viral stuff going on.

Have been on broad spectrum abx with odd pulse of flagyl. Interesting to see what others use and more interesting to see what other ausssies use as possibly different breeds of ticks , bugs, lyme and other bacteria.

 

[Valentijn]

None of those potential reasons for concern about mainstream testing are any reason to think that alternative testing is valuable and none of that would stop alternative doctors and labs from conducting the sort of blinded assessment of their testing that is needed to show it's value.

The problem is that if all alternative testing is considered invalid and prohibited or not used, we are only left with mainstream testing. Except that the mainstream testing is known to be highly inaccurate due to producing a very high level of false negatives.

If we dismiss alternative testing, should we settle for a huge proportion of people with a Borrelia infection going undiagnosed and untreated? Or do we treat based on symptoms and/or exposure, instead of tests? Would treating largely based on symptoms and exposure be more effective than treating on tests suspected to have a large number of false positive rates?

As a practical matter, I don't think alternative tests can be considered in isolation. It's also necessary to look at the consequences of determining that they should not be used, and that means looking at the problems with mainstream tests.

 

[Esther12]

If we dismiss alternative testing, should we settle for a huge proportion of people with a Borrelia infection going undiagnosed and untreated? Or do we treat based on symptoms and/or exposure, instead of tests? Would treating largely based on symptoms and exposure be more effective than treating on tests suspected to have a large number of false positive rates?

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.

 

[GcMAF Australia]

I have been on some type of abx most of the time and feel better for , also with avs. So wouldn't suprise me if I had bacterial and viral stuff going on.

Have been on broad spectrum abx with odd pulse of flagyl. Interesting to see what others use and more interesting to see what other ausssies use as possibly different breeds of ticks , bugs, lyme and other bacteria.

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

 

[kungfudao]

The problem is that if all alternative testing is considered invalid and prohibited or not used, we are only left with mainstream testing. Except that the mainstream testing is known to be highly inaccurate due to producing a very high level of false negatives.

If we dismiss alternative testing, should we settle for a huge proportion of people with a Borrelia infection going undiagnosed and untreated? Or do we treat based on symptoms and/or exposure, instead of tests? Would treating largely based on symptoms and exposure be more effective than treating on tests suspected to have a large number of false positive rates?

As a practical matter, I don't think alternative tests can be considered in isolation. It's also necessary to look at the consequences of determining that they should not be used, and that means looking at the problems with mainstream tests.

Well said ,and right on the money. There is many things to look for not just a lyme test. Just saying the words "TREATING EMPIRICALLY"(no punt intended to the person that started this topic) insinuates that they are treating with no evidence.Maybee rarely if the doctor is worried about the condition becoming Chronic.Lyme Doctors are looking at more than a hundred symptoms , Like 7th nerve involvement,CD-57 (stricker panel) just like in HIV they look at the T-CELL count, D1- hydroxy,Co infections ,The tick gives you other infections 85% of the time, C-Reactive protein, being in endemic areas,Multi systemic symptoms, Process of elimination. being bit by a tic and becoming symptomatic with or without a bullseye rash (there are more than a dozen types of rashes involved with lyme).Any Doctor that just looked at 1 or 2 tests and determining that someone does not have a Borrelia infection would be committing medical Malpractice and in my opinion should loose his or her license, that is why using terms like Traditional tests are misleading ,and using the term Empirically is in most cases not accurate or correct.

 

[kungfudao]

"Never walk away from a pissing contest." Sun Tzu, The Art of War, cir 500 BC

"Always walk away from a pissing contest." Mahatma Gandhi, Calcutta, 1935

"Don't eat the yellow snow." Frank Zappa, 1974

Lau Tzu said: He who go to bed with I-Ching bum wake up with stinking finger.