Dr. Says Lyme disease does not exist

[kungfudao]

Wouldn't that be untreated lyme, late stage lyme or even disseminated late-stage Lyme disease?

I interpret chronic as meaning a condition where only the symptoms can be controlled verses acute which is a condition that can be resolved.

Whether that's correct or not, I don’t know. The terms are confusing.

I guess I'm saying long term treatment with antibiotics may not be needed. The evidence seems to be pointing to some people possibly taking them longer as it's harder to treat than originally thought but that after a certain time, I guess depending on the individual, other treatments might be more appropriate as the original infection may be gone but there are still symptoms caused by the original infection. So in that sense it could be chronic if there is no cure?

It's really confusing so don't know which terminology is correct.

But anyway you look at it, it's a serious condition which can lead to devestating health consequences.

Barb

That seems to be the opinion of some people who don't have it.I would be interested in the research you are talking about,That points to PTLD. Most of what I have seen is very speculative and has never been proven .On the other hand There is plenty research showing chronic late infections after antibiotics, which doesn't mean there was no benefit.
The definition of chronic as I under stood was incurable or recurring at least up to this point.

 

[kungfudao]

Hmm, I might have been exaggerating somewhat, but something like it has probably been around for at least 15 million years: http://www.livescience.com/46007-lyme-disease-ancient-amber-tick.html

I dont think you are over stating at all,you hit the nail right on the head.

 

[kungfudao]

The doctor doesn't say that Lyme can't cause long term consequences. On the contrary, he says that "some patients may experience symptoms after appropriate treatment for Lyme". And while we agree that this "some" is much bigger number and the symptoms may never resolve, we can't know if this is caused by active infection or it is just the consequences of already impaired nervous system (despite the infection being cleared) .

That could alway be a factor,Toxins being left in the body, that could complicate the situation, But to my understanding there has never been a conclusive study showing that PTLD is the cause of chronic lyme,that is only speculation.On the contrary there has been multiple studies showing that lyme Borreliosis is chronic and can evade the immune system and antibiotics. The Term appropriate treatment has been proven to not be appropriate in multiple studies.as a side note there is over 300 Borrellia species in the world and 101 in the US
Respectfully brother. .

 

[kungfudao]

Technically , only infection with Borrelia is called Lyme.

: They call it Chronic Lyme syndrome, which includes all co infections viruses suppression of the immune system etc. Dr Horowitz calls it MSIDS Multi Systemic Infectious Disease Syndrome ,Lyme is only The Back drop.

 

[GcMAF Australia]

Of course it wouldn't because of ethical considerations.



Tradition? Can you cite some cases.



Technically, others can do experiments, but that's not the usual procedural expectations in science.


http://en.m.wikipedia.org/wiki/Evidence#Evidence_in_science



This is speculation based on an in vitro study. It may or may not be true. More studies are needed before this is defintive.

I've said my piece, take whatever you want from it. I just don't have the time nor the energy to comment further.

Barb

There is considerable evidence finding Borrelia in many "Diseases"
This includes DNA sequences
The fact is some people get better after Lyme Disease treatments. Of course this varies.
Maybe doctors could try and tell Alzheimer's patients that the Borrelia in their brain is not affecting them
and that the Borrelia in their hearts has no affect
or in their spinal cord
etc etc
Also there is evidence that Borrelia suppresses the immune system
Bear in mind that infections do not occur in isolation and there are often (always?) coinfections

 

[GcMAF Australia]

I recently rested positive for borrelia and babesia. If you want to read thousands of research references to how these tricky blighters persist Barb, excellent free resources are to be on James Schaller's personalconsult.com
website. It is a website with its eccentricities for sure, but his work on the haematology of babesia, and the means and mechanisms for its persistence is impressive.
I find the whole attack on the idea of chronic Lyme puzzling; these are robust organisms, and many of our medications are useless or inadequate. If a bacteria or protazoa can exist in the brain, or in difficult to see or access intracellular environments, why wouldn't they be hard to find? Schaller makes the excellent point that most labs have inadequate training and equipment and motivation to find them anyway. Once again, I return to Thomas Kuhn and the structure of scientific revolutions - medicine doesn't see what it doesnt expect to see.
I also am saddened that on returning to PR after a break, I now have a disease process that I expected to justify and defend.

I agree SianR
It is disappointing to have to justify everything over and over.
For some people to say that Doctors are profitting from a Lyme Diagnosis can be misleading as many Lyme Doctors are left struggling and are persecuted for helping people!!
There can be some slanderous statements as I can attest to.

 

[GcMAF Australia]

Another finding that perhaps adds weight to the idea that chronic Lyme disease might be caused by an intracellular infection of Borrelia is this:

If we look at ME/CFS, which has near identical symptoms to chronic Lyme, we find that the two bacteria which are known causes of ME/CFS, namely Chlamydia pneumoniae and Coxiella burnetii, are both obligate intracellular bacteria.

An obligate intracellular bacterium is one that always creates intracellular infections; it has no choice in the matter. In other words, these obligate intracellular bacteria cannot create extracellular infections located outside of cells; they can only live inside cells. (This contrasts to L-form bacteria like Borrelia, which are more versatile, and capable of changing form, which allows them to live either inside or outside human cells).

So the only two bacteria known to cause ME/CFS both live inside cells. This perhaps hints that it may be the intracellular of Borrelia (the L-form / spheroplast form of Borrelia) that causes the ME/CFS-like symptoms of chronic Lyme.

Some Australian doctors find that virtually all of their CFS people have Borrelia infections. Of course most have either Chlamydia pneumoniae or Mycobecteria infections as well.
It is no wonder people are so ill

 

[GcMAF Australia]

The doctor doesn't say that Lyme can't cause long term consequences. On the contrary, he says that "some patients may experience symptoms after appropriate treatment for Lyme". And while we agree that this "some" is much bigger number and the symptoms may never resolve, we can't know if this is caused by active infection or it is just the consequences of already impaired nervous system (despite the infection being cleared) .

The persistance of borrelia and other bacteria is a big problem.
Doctors generally have little idea of how to prescribe antibiotics.
The only way to prove there is no bacteria left in a person is to put them through a blender and test the whole mix.

 

[GcMAF Australia]

They call it Lyme syndrome,which includes all co infections viruses suppression of the immune system etc. Dr Horowitz calls it MSIDS Multi Infectious Disease Syndrome ,Lyme is only The Back drop.

Indeed in a sense the immune system is dysfunctional and thus allows infections to multiply.
there are several machanisms for this

 

[GcMAF Australia]

That is certainly a possibility at this stage: that the original infection may have triggered some dysfunction in the body such as autoimmunity, which continues even after the infection has been cleared up.


However, if we consider the analogous situation of chronic coxsackievirus B myocarditis (heart muscle infection), this is another disease in which, after the original acute infection, chronic symptoms can remain in the heart, even though in adults no infectious virus can be found in these chronic cases.

However, we now know that in chronic infections, enterovirus can change its form and become an intracellular infection that can live inside heart cells on a long term basis (this intracellular form is called a non-cytolytic enterovirus).

Because the intracellular form of the enterovirus does not produce normal viral particles, this infection was not readily detected, and this is why autoimmune-type immune dysfunction was thought to be the cause of the chronic symptoms found in chronic myocarditis following coxsackievirus B infection.

But now with the discovery of non-cytolytic enteroviruses, the more likely explanation of these chronic symptoms would appear to be this intracellular enterovirus infection, which can persist indefinitely inside cells (more info here). Non-cytolytic enteroviruses of course are also speculated to play a major role in enterovirus-associated ME/CFS.



There is similar situation with Borrelia. This bacterium is pleomorphic, which means that Borrelia can change forms, and exist in different forms. In particular, there is evidence that Borrelia can exist as an intracellular infection, hidden away inside cells.

It may be that these intracellular forms of Borrelia are the primary drivers of Lyme disease in its chronic phase, and because these intracellular forms of Borrelia are not readily detected or treated, some researchers may assume that after the acute phase, the infection has cleared up, and assume that the chronic symptoms are due to continued autoimmunity or suchlike.

However, if an intracellular form of Borrelia is still hanging around hidden inside human cells, just as enterovirus does, this may be a much more likely explanation for the chronic symptoms of Lyme.

Not only does Borrelia hide away in cells but it can be tucked away in biofilms or in structures that are difficult for antibiotics to penetrate, such as tendons and bones etc

 

[kungfudao]

In regards to doctors that don't believe in Lyme. I once saw a Parkinson movement disorder specialist???
After he did a battery of mainstream tests, they all came up negative.I did their mainstream lyme test which he had already assured me I didn't have, and even did a spinal tap, which came up negative also. He was not aware of the research on the unreliability of LP for lyme.The lyme test came back neg with their Elisa.
I told him I had been to a dentist for a surgical procedure. I had never been treated for lyme with antibiotics.The dentist prescribed a triple antibiotic to make sure the infection went away. It was Flagyl, Clarithromycin,and I think Penicillin.(mainsstream Lyme antibiotic) I suddenly started to feel great.I only did the meds for 2 weeks.I had a Lyme crash about one years before that, and I mean face down in the dirt literally, Hallucinating face paralyzed, panic attacks, unable to eat, dry heaving, drenching sweats, couldnt remember if I was coming or going, every bone in my body hurt, I could barely walk' and extreme tremors, ,just to name a few.I really thought my life was over. After a month a got the sense to go to the ER.Klonopin pulled me out of the major panic disorder,which i've been on ever since.
I was had been referred to this new Doctor. Parkinson's movement Disorder Neurologist. I wanted to go back on these antibiotics for a trial and gave him some research about Lyme. He said absolutely not. and told me It was very dangerous to take antibiotics without a diagnosis,research etc. He explained how important it was to have valid research and said ,this is not safe, you could cause damage to your self doing this. He proceeded to say unfortunately so many people will half to die before there in research to back it up. he was talking so fast I don't think he realised what he had just said to me. In the same breath he said I could damage myself with antibiotics, and that I might need to Die before research was completed???.
In the movie Under our Skin, One of the sick people said "Antibiotics are not dangerous if you have a Fatal infection. I would love to hear some feedback on this.Whatever your opinion is...By the way, I later tested pos for Babesia and the important bands were there in the western blot.meaning I had unequivocally been exposed.

 

[GcMAF Australia]

I was referred to this new Doctor. Parkinson's movement Disorder Neurologist. I wanted to go back on these antibiotics for a trial and gave him some research about Lyme. He said absolutely not. and told me It was very dangerous to take antibiotics without a diagnosis,research etc.
..By the way, I later tested pos for Babesia and the important bands were there in the western blot.meaning I had unequivocally been exposed.

The neurologist is totally 100% wrong
maybe 200% wrong
Some people have been on antibiotics for years.
It has helped heaps for a lot of people.
I am not sure if it is necessarily the best treatment, but better than being dead by some distance.
Some doctors check the antibiotic levels just to make sure that there is sufficient in the blood
I think this was tdoxycycline?

 

[Daffodil]

why not just show some articles about doctors using antibiotics for CFS/Lyme and having success, such as DeMeirleir, Jadin, Mirkin, etc.

to show you are open minded and reasonable, tell your doctor you don't know if it is actually lyme being targeted but maybe some other bacteria....but there are people getting a lot better on the treatment.

if he is reluctant to even do a trial, i am not sure how you will get long term antibiotics from him, though. and if you get sick when you take them - which could be a herx - he will likely take you off them.

try to look for another doctor!

 

[kungfudao]

There is considerable evidence finding Borrelia in many "Diseases"
This includes DNA sequences
The fact is some people get better after Lyme Disease treatments. Of course this varies.
Maybe doctors could try and tell Alzheimer's patients that the Borrelia in their brain is not affecting them
and that the Borrelia in their hearts has no affect
or in their spinal cord
etc etc
Also there is evidence that Borrelia suppresses the immune system
Bear in mind that infections do not occur in isolation and there are often (always?) coinfections

why not just show some articles about doctors using antibiotics for CFS/Lyme and having success, such as DeMeirleir, Jadin, Mirkin, etc.

to show you are open minded and reasonable, tell your doctor you don't know if it is actually lyme being targeted but maybe some other bacteria....but there are people getting a lot better on the treatment.

if he is reluctant to even do a trial, i am not sure how you will get long term antibiotics from him, though. and if you get sick when you take them - which could be a herx - he will likely take you off them.

try to look for another doctor!

That Doctor is long gone, I kicked him to the curb, I have a great LLMD now. Sorry I wasn't more clear.
I posted this to show the rationale of some mainstream US (my experience) traditional Doctors ,in one breath they are warning you of the dangers of overuse of antibiotics, and they give you worthless lyme tests(Elisa),but even if it comes up positive they say its a false positive. They don't test for co infections, then they say "great news, your not sick then you insist you are, and they say you are depressed with no blood test to prove it. Then they give you antidepressants and steroids for the pain,without any evidence of whats causing your pain.(never give steroids to a stealth bacteria) and they explain that people will need to die while research is being done.Its craziness,maybe they need more classes in medical school on critical thinking.
After that experience I started reading and researching everyday, It was just mind boggling what I've learned.That was ten years ago.I found the right doctors and I'm well on my way.

 

[GcMAF Australia]

These questions about the use of antibiotics are discussed by doctors treating Lyme.
Lyme is a "complex issue" and a whole range of strategies has emerged

 

[kungfudao]

The neurologist is totally 100% wrong
maybe 200% wrong
Some people have been on antibiotics for years.
It has helped heaps for a lot of people.
I am not sure if it is necessarily the best treatment, but better than being dead by some distance.
Some doctors check the antibiotic levels just to make sure that there is sufficient in the blood
I think this was tdoxycycline?

The other thing that gets overlooked all to often is that most people that have lyme could have had it for decades like me. It lies dormant having noticeable symptoms but not devastating, Then you have the lyme crash, That is why the Elisa test is so unreliable. In the research study with maka monkeys it was 60% wrong in untreated monkeys after 27 weeks and 100% wrong in treated monkeys after 27 weeks even if you did just get bit by a tick, you might have been exposed to it at some point in your life.For me it was triggered by steroids from a reumatologist.

 

[GcMAF Australia]

The other thing that gets overlooked all to often is that most people that have lyme could have had it for decades like me. It lies dormant having noticeable symptoms but not devastating, Then you have the lyme crash, That is why the Elisa test is so unreliable. In the research study with maka monkeys it was 60% wrong in untreated monkeys after 27 weeks and 100% wrong in treated monkeys after 27 weeks even if you did just get bit by a tick, you might have been exposed to it at some point in your life.For me it was triggered by steroids from a reumatologist.

Indeed
The immune reactions indicate that 3-10% of healthy people have Lyme Disease.
it is often only when their body becomes overwhelmed that many even bother with tests.
This is a bit late

 

[kungfudao]

Kungfudao, my sister, who has lyme, suggests that your doctor might want to contact Dr. Steven Harris, a lyme doc in Redwood City, CA - who began experimenting with I.V. dapto/doxy combo earlier this year.

Kungfudao, my sister, who has lyme, suggests that your doctor might want to contact Dr. Steven Harris, a lyme doc in Redwood City, CA - who began experimenting with I.V. dapto/doxy combo earlier this year.

Actually they discontinued cefoperazone,I called the office of Dr Harris, he passed on a message to me that ceftaroline 4-6 hundred mg a day is a good substitute. Your good Idea came just at the right time.

 

[JohnnyD]

Great, glad to hear it - I'll let my sister know.

 

[kungfudao]

Thank for the vote of confidence.I posted my doses on Duncan's reply but don't take any of it as fact, I am still researching, and will be consulting more with my LLMD.and even though they are FDA approved these drugs ,they have not been documented in that combo, But I think To some degree one would follow the same kind of combo therapy with different classes of antibiotics.
Like mixing ,Rocephin ,Azithromycin,and Mino or Metronidazole,What I need to research more is:..I don't think any of those antibiotics are cyst busters per say But as you may have read it Killed all Forms ...Planktonic etc, and disrupted the Ion structures. Oh man!!! I've had and seen so much suffering over the years... This Doctor saying there is so such thing as Chronic Lyme is certainly not basing his opinion on any solid research or evidence.

In regards to Daptomycin Ceftaroline and Doxycycline:
New update on my treatment:As some of you may know Cefoperazone has been Discontinued: The drug of choice is Ceftaroline it is a 5th generation cephalosporin with no gallbladder issues. It is done 4 to 600 mg per day ,some may do it every 12 hrs. I have sent Emails to several Heavyweights in the Lyme world .I have gotten replies from several some are doing This protocol as we speak, with the same substitute of Ceftaroline (Teflaro).They understand that the sickness outweighs the risk.
I will be doing extensive blood work every two weeks. and emailing my Doc every other day.
By the way my doctor is a heavyweight in his own regard.At this time he does not want me to pulse. He also follows a very alternative approach, and everytime I see him he's working on a new alternative therapy. Which we will also incorporate.

I am waiting for the substitute to be approved By my ins, and I will give regular updates on this blog. The waiting is Killing Me.