Dr. Says Lyme disease does not exist

[Valentijn]

Technically , only infection with Borrelia is called Lyme.

Yes. But their argument is that the Lyme was treated, therefore remaining problems don't actually exist, and the symptoms are psychosomatic. An alternative possibility is that Lyme is indeed gone, but non-Lyme infections remain and continue to cause symptoms.

 

[duncan]

Yes, this is one of the main points of scientific contention: Are continuing symptoms post-treatment due to persistent infection, or has Bb been eradicated and some other process is responsible for those relentless symptoms.

Where it gets sticky is when you look under the carpet and see what lies there. What garbage has been more or less hidden from public scrutiny that suggest factors decidedly unscientific may be behind the current Lyme debacle of unreliable diagnostics and treatments that all too frequently prove inadequate.

So for me it's not just the debate over whose science is more robust and definitive - because really so far there aren't too many "A's" being awarded - but who has been manipulating the story line, and why.

 

[Sidereal]

ETA: Also, btw, chronic Lyme is widely and accurately used throughout the world, especially in European nations where Bb is endemic. It wasn't Lyme literate doctorates that perverted the usage. They simply embraced it and used it in such numbers that a counter-initiative was launched to discredit the concept.

This is so true.

I spent a big part of my childhood in an endemic area in Europe with some of the highest rates of borreliosis in the world. Almost everyone I know had Lyme disease at some point and many of us know at least one person who became an invalid as a result of this infection or at least heard many horror stories about late-stage disseminated infection. The danger of not noticing a tick bite and getting immediate treatment with abx was drummed into us by doctors, parents etc.

There is zero controversy about the existence of late-stage disseminated infection in such parts of Europe. Every doctor and parent is acutely aware of the problem and people, especially children, are checked constantly for ticks after returning from trips to nature unless their parents are insane negligent alcoholics or something.

This whole idea that LLMDs in America invented some bogus concept of chronic Lyme disease to cash in on vulnerable patients is ABSURD and stems from insularity of American medicine, unfamiliarity with the European literature and languages, and the bogus American rheumatological literature being produced by major academic centres to justify denial of treatment and to keep insurance companies happy. It's much cheaper to prescribe antidepressants and deny disability payments. Hell, they would still be happily injecting prednisone into infected people if they could get away with it like in the 1970s.

I will say, though, that I disagree with long-term abx treatment. I think this approach helps only a minority of late-stage Lyme patients and many are harmed by the devastating effect of antibiotics on the microbiome.

 

[Antares in NYC]

There is zero controversy about the existence of late-stage disseminated infection in such parts of Europe. Every doctor and parent is acutely aware of the problem and people, especially children, are checked constantly for ticks after returning from trips to nature unless their parents are insane negligent alcoholics or something.

This whole idea that LLMDs in America invented some bogus concept of chronic Lyme disease to cash in on vulnerable patients is ABSURD and stems from insularity of American medicine, unfamiliarity with the European literature and languages, and the bogus American rheumatological literature being produced by major academic centres to justify denial of treatment and to keep insurance companies happy. It's much cheaper to prescribe antidepressants and deny disability payments. Hell, they would still be happily injecting prednisone into infected people if they could get away with it like in the 1970s.

Thanks for posting this, @Sidereal. Borreliosis (relapsing fever) has been a known illness in Europe for decades, and although there's no cure for late disseminated infection, it never had the vicious political implications or controversy that it acquired in the States. Without the influence of money, insurance lobbies and the ferociously defensive attitude of these academic doctors (most of them don't see or treat real patients), we would not find ourselves in this bind.

Just follow the trail of patents and then you get the picture:

“In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”

- Dr. Kenneth Liegner​

 

[kungfudao]

I am actually going to be starting this combination of Daptomycin, Cefoperazone,and Doxycycline ,The research paper looks very promising considering it was done in a petri dish. It has been approved by my ins...Cant wait... a bit of hope after a long ugly ride.

 

[duncan]

I usually don't speak about treatment prospects, but I had to say I think this is very leading edge, @kungfudao . I would think it is both a little exciting and scary. Now that we know Bb persisters exist, tackling them eventually just seems the thing to do.

But the combo hasn't been trialed.

Will you be pulsing? If so, how did you determine the interval? I discussed this with my specialist, but we were a little puzzled about the pulsing interval. I was concerned about the Dapto, but he didn't seemed too bothered by that. It was more the math that stumped us.

Also, we were considering just pulsing with Rocephin alone, since someone had demonstrated efficacy with persisters through that drug (I want to say it was Zhang, but not sure).

 

[Hanna]

What will be your dosage @kungfudao ? Good luck with the experiment !!! And keep it safe please !

 

[duncan]

Yeah, I second what Hanna just said. I fear I am not brave enough to be a pioneer, so I applaud those that are. A tip-of-my hat to you @kungfudao , for your bravery, but please be careful. There is risk involved because trials haven't been conducted yet.

 

[kungfudao]

I usually don't speak about treatment prospects, but I had to say I think this is very leading edge, @kungfudao . I would think it is both a little exciting and scary. Now that we know Bb persisters exist, tackling them eventually just seems the thing to do.

But the combo hasn't been trialed.

Will you be pulsing? If so, how did you determine the interval? I discussed this with my specialist, but we were a little puzzled about the pulsing interval. I was concerned about the Dapto, but he didn't seemed too bothered by that. It was more the math that stumped us.

Also, we were considering just pulsing with Rocephin alone, since someone had demonstrated efficacy with persisters through that drug (I want to say it was Zhang, but not sure).

When You have tried every thing lost 10 years of your life and gotten improvements, but not cured,I cant imagine not trying this. Of course I will be very cautious and start slow , me and my LLMD have agreed the dose to be Doxy 400 I.V.q every 24 hrs slow drip, Daptomycin 400 mg ,IV push(fda approved for push) and cefoperazone comes (I think IM or IV) in 2 gram bottles bid, I don't know how much it hurts I.M. but I will use lidocaine if needed..
I will start slow to see the reactions I get, Probably dapto first then cefoperazone if it all good , Than of course I will get more
Info from my Doctor, Blood work of Liver Kidneys etc. Im sure I will pulse at some point. and use probiotics among many other things,
These Meds as you know are FDA approved, But I will Proceed Cautiously. The Research looks amazing... It explains so many things,The cost is about 40,000 a month, My ins is covering....In the mail ...Onward,
Of course this is not medical advice.

 

[kungfudao]

What will be your dosage @kungfudao ? Good luck with the experiment !!! And keep it safe please !

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.

 

[kungfudao]

Yes. But their argument is that the Lyme was treated, therefore remaining problems don't actually exist, and the symptoms are psychosomatic. An alternative possibility is that Lyme is indeed gone, but non-Lyme infections remain and continue to cause symptoms.

Its comical to watch these mainstream doctors make their snide remarks about lyme doctors.Many have told me "I am a traditional Doctor we need double blind studies and positive tests, and then the will say you are depressed and give you this big long scenario about how your depression effects your digestive tract and that affects your immune system and so on and so on....I just put out my arm and say OK doc, can you give me the depression blood test, and they say there is no blood test for depression, I say what??? I thought you were a traditional Doctor???

 

[kungfudao]

Yeah, I second what Hanna just said. I fear I am not brave enough to be a pioneer, so I applaud those that are. A tip-of-my hat to you @kungfudao , for your bravery, but please be careful. There is risk involved because trials haven't been conducted yet.

This is informative from Dr Richard Horrowitz
Dr. Richard Horowitz"Thank you for helping to move the research along, however human trials can be done with Daptomycin and other antibiotics mentioned in the study before animal studies are finished. Many Lyme patients are sick now and can not wait. I am working with my foundation, The Lyme Navigator Foundation, which is a 501c3 to accomplish this."

 

[Forbin]

I'm not really up on Lyme and this may be old news, but I did run across this article in a recent issue of Scientific American in case it is of interest to anyone:

Lyme Disease May Linger for 1 in 5 Because of "Persisters"
A new theory about long-lasting Lyme disease symptoms suggests treatment options

By Melinda Wenner Moyer | Aug 18, 2015

http://www.scientificamerican.com/article/lyme-disease-may-linger-for-1-in-5-because-of-persisters/

 

[justy]

My opinion is that chronic lyme does not exist but post treatment lyme does. Studies are showing that the original infection starts a set of cascading symptoms, even though the original infection is eradicated.

I seem to spend my whole life pointing out in these discussions that a vast amount of cases of Late stage or chronic Lyme is in people who have NEVER been treated or even tested for Lyme despite all the symptoms and many years of ill health. These people, such as myself do NOT have Post treatment lyme, how can we, we have never had ANY treatment, some of us have been sick for 10, 20, 30 years or even our whole lives. Some of us have passed this on to our children who have had their whole lives blighted by Lyme and co infections.

We certainly have chronic Lyme, because we were never given the chance to be treated early on and the disease has played havoc with our bodies and minds. Many LLMD's are NOT treating people who knew they had lyme, had a few weeks of Doxy but then got ill again or never fully recovered (although these people do exist), but are treating people with severe chronic health problems who have been let down massively by their health services and governments and are finally finding the cause. By this time the person may have been infected for years and any hope of completely eradicating the disease is gone.

 

[barbc56]

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

 

[JohnnyD]

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.

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]

Thanks I've spoke with Steve Harris ,Im sure my Doctor Knows him, My Doc has Used them before but not with the cefoperazone, It would be interesting to see what kind of success he has had. good Idea.

 

[duncan]

The pulsing may be an issue. I've read each of the three main persister studies, and in vitro does not necessarily translate into clinical use (duh). If I remember correctly, there are several drugs that work, but the variable that made them effective was pulsing.

Some LLMD's have been pulsing for some time, just not these combos.

I am supposed to soon start IV Rocephin, reluctantly, but now I may deep-six that until I can formulate a good pulsing schedule - which I will probably borrow from a one of those LLMDs that pioneered the concept.

Eh, but I am concerned about throwing money at an untested protocol. What if I am on for three weeks, then off for one week - and it should be on for 28 days, off for 14, or whatever? These aren't oral abx - they are IV.

These particulars may matter.

See? This is why I failed Pioneering 101 at Lewis & Clark U.

ETA: Not trying to convince anybody to do or not do anything - I was mulling my personal conflicts and confusions and concerns.

 

[kungfudao]

The pulsing may be an issue. I've read each of the three main persister studies, and in vitro does not necessarily translate into clinical use (duh). If I remember correctly, there are several drugs that work, but the variable that made them effective was pulsing.

Some LLMD's have been pulsing for some time, just not these combos.

I am supposed to soon start IV Rocephin, reluctantly, but now I may deep-six that until I can formulate a good pulsing schedule - which I will probably borrow from a one of those LLMDs that pioneered the concept.

Eh, but I still feel silly throwing money at an untested protocol. What if I am on for three weeks, then off for one week - and it should be on for 28 days, off for 14, or whatever? These aren't oral abx - they are IV.

These particulars may matter.

See? This is why I failed Pioneering 101 at Lewis & Clark U.

You are right about in vivo or in Vitro,so many places in the human body to hide,bones, tendons, brain, root canal fillings and so on It is important to note that ALL the FDA approved mono or combo therapies failed to completely eradicate the bacteria in vivo, including Rocephin, Benzathine Penicillin etc. that is very telling and it explaines that made up fictional word "PTLD". I have done very long term, Rocephin,Iv push with 30cc's saline two 1 gram bottles x 2 per day (bid) with a butterfly12 "hose 25 gage needle(easier than a catheter) note I was in the ER 4 times with gallbladder attacks ... and Bicillin IM 1.2 mil u x 4 pr week (At different times of course) They both helped me greatly and in combination with either mycins or cyclines (macrolides) and cyst killers. These combos pulled me out of a hellish existence, but never cured me (anyone who is thinking aha psychosomatic.Well, I cant say what I would like to say on this forum Ha Ha,so I will just say hundreds of thousands of people are not stupid).Back to the point. Daptomycin ,Cefoperazone and Doxycycline were the ONLY combos to completely eradicate the bacteria IN A PETRI dish, But even in a Petri dish it was the only one that worked 100%. I'm not even crazy about the authors and universities that conducted the research(John Hopkins etc.) because they have put out a lot of anti chronic lyme literature. even the wording suspecting PTLS in the article(But then goes on to disprove that theory or at least proves a plausible reason that people could still be sick ,also it clearly shows how the bacteria morphes into other forms that renders certain mainstream CDC and IDSA recommendations and testing to be useless, But more importantly the funding was by : LYME RESEARCH ALLIANCE. So in a nut shell it is groundbreaking research that has been desperately needed, And I'm more than happy to be on the frontline, putting it to the test (cautiously) If you want to know the truth (which could start another debate,which I'm happy to engage in) I was born with Lyme disease as was all my other 2 siblings .My father is suffering Horribly ,My mother Died of cancer in76 from what I believe was caused by suppression of the immune system as a result of Borreliosis.
Respectfully ...Onward

 

[kungfudao]

Its comical to watch these mainstream doctors make their snide remarks about lyme doctors.Many have told me "I am a traditional Doctor we need double blind studies and positive tests, and then the will say you are depressed and give you this big long scenario about how your depression effects your digestive tract and that affects your immune system and so on and so on....I just put out my arm and say OK doc, can you give me the depression blood test, and they say there is no blood test for depression, I say what??? I thought you were a traditional Doctor???

Once a Doctor asked me if I was suicidal. I told him" OK thats a fair question...but first you answer one question, If a person jumps off a building ,are they suicidal ???" He replied with a stupefied look on his face and said,"of course that's suicide"
I then asked him "what if the building is on fire" he said nothing with a blank stare .I replied " MY BUILDING IS ON FIRE"