Some new ideas about Lyme Disease

[Uncle Joe]

This article is from earlier this year but it's interesting. Particularly, how sudden onset dementia is a sign and that at least one person was institutionalized for schizophrenia when he actually had Lyme. Good and promising information.

http://www.mvtimes.com/2016/07/13/visiting-physician-sheds-new-light-lyme-disease/

[imscotty]

Thank you for that post.

[Traillium]

Surprised there's no mention of using Permethrin on clothes as a prophylactic …

[Uncle Joe]

Surprised there's no mention of using Permethrin on clothes as a prophylactic …

She mentions using repelant when following up with patients but that's about it. I think the focus here was for clinicians and their treatment of Lyme and its detection.

[Dogwood]

https://www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Coinfections/dp/0970869630

https://rawlsmd.com/health-articles/my-chronic-lyme-disease-journey

https://www.google.com/imgres?imgurl=http://t1.gstatic.com/images%3Fq%3Dtbn:ANd9GcRk5YAr3N7skuuYLHxMChnOk7o2G-t6EOkGps6Fn3MeegYlgKHr&imgrefurl=http://books.google.com/books/about/Healing_Lyme.html%3Fid%3D4m9WrgEACAAJ%26source%3Dk p_cover&h=400&w=266&tbnid=3fqN45YDPRP6CM:&vet=1&tbnh=160&tbnw=106&docid=D7oSyut2GUjuTM&itg=1&client=safari&usg=__O6x5Vy-AwfsTIYd8qtWY_pwFwVA=&sa=X&ved=0ahUKEwi84dmE36zRAhUD6SYKHbVLCy8Q_B0IhgEwCg

Profound herbalist approach/protocol without the harsh common antibiotics given having wider health consequences

[Leo L.]

Another approach seems to be to apply antibiotic cream straight after the bite.
There had been 100% success rate in test runs, and it should be free of negative side effects.

After having read about Permethrin treated clothes here on WB, something that is unknown here in Austria, I treated my trousers at the beginning of last summer with an insect spray that should come as close to Permethrin as possible and although I spent weeks in outdoor areas where ticks normally abound I didn't see a single one on me.

[Time Zone]

Science-based medicine weighs in on Lyme (chronic, as distinguished from acute):

https://sciencebasedmedicine.org/chronic-lyme-disease-another-negative-study/

[swjohnsey]

Chronic Lyme is the new chronic fatigue syndrome. The hypochondriac's wet dream.

[Wise Old Owl]

Another approach seems to be to apply antibiotic cream straight after the bite.
There had been 100% success rate in test runs, and it should be free of negative side effects.

After having read about Permethrin treated clothes here on WB, something that is unknown here in Austria, I treated my trousers at the beginning of last summer with an insect spray that should come as close to Permethrin as possible and although I spent weeks in outdoor areas where ticks normally abound I didn't see a single one on me.

I don't understand how "applying antibiotic" topically. How would that work when Lyme is a spirochete that is already in the blood stream from the actual bite? where would you find the data on this?

[imscotty]

Chronic Lyme is the new chronic fatigue syndrome. The hypochondriac's wet dream.

Unless you actually have it, then it sucks.

[Miguelon]

Thanks for your post. Interesting information.

Miguelon

[MuddyWaters]

Unless you actually have it, then it sucks.

+
I have a friend whose brother had it. Long road to recovery. It kicked his arse. He was once an ultra athlete. Untill he got lyme.

[Leo L.]

I don't understand how "applying antibiotic" topically. How would that work when Lyme is a spirochete that is already in the blood stream from the actual bite? where would you find the data on this?

There was a short article in an Austrian newspaper, which referred to a study published in The Lancet:
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(16)30529-1/abstract
The high level English in this article is beyond my understanding, but maybe you get a clue and can give your interpretation?

[Another Kevin]

There was a short article in an Austrian newspaper, which referred to a study published in The Lancet:
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(16)30529-1/abstract
The high level English in this article is beyond my understanding, but maybe you get a clue and can give your interpretation?

The conclusion was that the azithromycin didn't hurt, but it didn't work, either. 11% of both the azithromycin and placebo groups got the disease. They stopped the trial early because it was obvious that it wasn't working.

[Leo L.]

Duhhh.
In the newspaper article it was stated, that 100% of the 1000 Azithromycin user stayed clear of Lyme, while seven of the placebo group developed Lyme (we call it Borreliose).
Quite exactly the opposite.

Thanks for your correction!

[Time Zone]

Chronic Lyme is the new chronic fatigue syndrome. The hypochondriac's wet dream.

I'm not quite sure they're analogous. Based on my reading of SBM (link above), it's that whatever might be causing the constellation of symptoms colloquially referred to as "chronic Lyme Disease", does not appear to be a bacterial infection with the Lyme spirochete(s). In other words, it's not that Chronic Lyme is imaginary, it's that the term is a misnomer.

[Offshore]

I don't understand how "applying antibiotic" topically. How would that work when Lyme is a spirochete that is already in the blood stream from the actual bite? where would you find the data on this?

I had the same thought. There is science-based evidence (e.g., NadelmanRB, et al. Prophylaxis with single-dose doxycycline for the prevention of Lymedisease after an ixodes scapularis tick bite. NEJM.2001: 345(2);79-84.) that indicates that a single 200 mg oral dose of doxycycline post-bite is effective in almost 100% of the time in preventing Lyme. A couple of years ago, my internist suggested I keep this in my first aid kit. Two pills are not a weight penalty.

This isn't a panacea in that a lot of people who develop Lyme never realize that they've been bitten in the first place, so prevention is the key. Treating your clothing or buying pre-treated clothing is easy enough and highly effective in preventing tick bites.

[Offshore]

https://www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Coinfections/dp/0970869630

https://rawlsmd.com/health-articles/my-chronic-lyme-disease-journey

https://www.google.com/imgres?imgurl=http://t1.gstatic.com/images%3Fq%3Dtbn:ANd9GcRk5YAr3N7skuuYLHxMChnOk7o2G-t6EOkGps6Fn3MeegYlgKHr&imgrefurl=http://books.google.com/books/about/Healing_Lyme.html%3Fid%3D4m9WrgEACAAJ%26source%3Dk p_cover&h=400&w=266&tbnid=3fqN45YDPRP6CM:&vet=1&tbnh=160&tbnw=106&docid=D7oSyut2GUjuTM&itg=1&client=safari&usg=__O6x5Vy-AwfsTIYd8qtWY_pwFwVA=&sa=X&ved=0ahUKEwi84dmE36zRAhUD6SYKHbVLCy8Q_B0IhgEwCg

Profound herbalist approach/protocol without the harsh common antibiotics given having wider health consequences

Is there any actual scientific data such as peer-reviewed articles or clinical trials to support any of this? If there isn't, then you're doing a profound disservice by promoting this pseudo-science. I can't put much faith in a physician who developed a treatment protocol (and evidently a career) that for some reason continue to be overlooked by medical science or a 12 year old book from some sketchy looking publisher written by a guy who has no medical training and is self-described as an "earth poet" who runs the "Foundation for Gaian Studies". Trust my health to these guys? Not in a million years.

For anyone looking for actual science-based information on ticks and Lyme, point your earth auras (and browser) to www.tickencounter.org

[rafe]

Chronic Lyme is the new chronic fatigue syndrome. The hypochondriac's wet dream.


Unless you actually have it, then it sucks.

I'm with Scotty on this issue. Looking back, I may have had un-diagnosed Lyme on one or two occasions. In the first case, it was pain in one should joint, lasting for months, which arrived and eventually disappeared without apparent cause. In the second and more recent case it led to Bell's Palsy and relatively minor but permanent neurological effects. Both of these episodes had the doctors totally baffled as to cause.

We have a neighbor and close friend who's been battling Lyme for months now. She's an RN and no hypochondriac.

[Don H]

Chronic Lyme is the new chronic fatigue syndrome. The hypochondriac's wet dream.

I have a friend who's son got it. He was bitten, they saw and removed the tick within hours of when he was bit, they figure it was while he was cutting the grass. He got the typical anti-biotic treatment immediately. However the antibiotics didn't work, the infection went to his brain, and he almost died. When he was fist hospitalized he went downhill so fast that the doctors told the parents that he had little chance of living. Eight years latter he's back to almost normal. I saw him go from death's door, to a wheel chair, to a walker, to using a cane, to finally being able to walk over a 6 year period. He missed his last 2 years of high school.

The cost to the family was tremendous and insurance only went so far. Their savings were wiped out, they lost their house since Mom had to quit her job to take care of her son.

I take offense to the hypochondriac comment.

[Deacon]

+
I have a friend whose brother had it. Long road to recovery. It kicked his arse. He was once an ultra athlete. Untill he got lyme.

Same with my son. He went to Maine last June for a weekend retreat in the woods and came home with Lyme. He's been struggling with it ever since.

[imscotty]

Unfortunately Lyme disease has become highly politicized. The CDC is not backing down from their protocols even though that there are plenty of doctors and evidence that this can be a more devastating and persistent disease than first thought.

For the naysayers, here is a list of 301 scientific studies that illustrate the persistence of Lyme disease...

https://canlyme.com/2013/11/01/persistence-of-lyme-disease/

[imscotty]

Probably the most frustrating thing about Lyme disease is the number of people who are suffering needlessly because of misdiagnosis. The most common first test for Lyme (ELISA) is all but worthless and by some estimates may be missing more than half the cases of Lyme disease.

Here is an interesting story of a misdiagnosis...

http://www.cbsnews.com/news/kris-kristofferson-misdiagnosed-alzheimers-has-lyme-disease/

[TexasBob]

..Particularly, how sudden onset dementia is a sign and ....http://www.mvtimes.com/2016/07/13/visiting-physician-sheds-new-light-lyme-disease/


http://www.cbsnews.com/news/kris-kristofferson-misdiagnosed-alzheimers-has-lyme-disease/

When I lived in Northern Virginia I had a 35 year old employee who began having memory problems and mild mental confusion. She went to a neurologist who diagnosed her symptoms as potentially due to Lyme's. She tested Lyme positive and after 2-3 weeks of antibiotics she made a full recovery.

[imscotty]

When I lived in Northern Virginia I had a 35 year old employee who began having memory problems and mild mental confusion. She went to a neurologist who diagnosed her symptoms as potentially due to Lyme's. She tested Lyme positive and after 2-3 weeks of antibiotics she made a full recovery.

Glad to hear she was able to recover. It makes me wonder how many 60, 70, 80 year olds might be in nursing homes now with 'Dementia' when all along it was Lyme Disease. Even if they were checked, about half the people with Lyme test negative on the ELISA test.

[trailmercury]

Unfortunately Lyme disease has become highly politicized. The CDC is not backing down from their protocols even though that there are plenty of doctors and evidence that this can be a more devastating and persistent disease than first thought.

For the naysayers, here is a list of 301 scientific studies that illustrate the persistence of Lyme disease...

https://canlyme.com/2013/11/01/persistence-of-lyme-disease/

Why is it unfortunate that it has become highly publicized?
"canlyme.com" doesn't catch me as a very "scientific" website right off the bat!
I am a physician in an area where deer ticks carry Borrelia at a rate of about 35% in the nymphal form...
I consider myself a "Lyme Literate Medical Doctor"
I keep up on evidence based, peer reviewed publications re: Lyme Disease.
In my best medical opinion "Chronic Lyme Disease" is not yet an accepted diagnosis...
If the patient has been treated with 14-21 day of any number of oral antibiotics (usually Doxycycline) known to eradicate Borrelia, the bacteria is for all intents and purposes gone from your body...
Patients may however, have long term sequelea from having been infected...This is unfortunate, but common
An analogy I use with my patients when the subject of chronic Lyme infection comes up:
Say someone suffers an ischemic stroke and loses motor function of one side of the body...(hemiparesis)
They may recover some or all of that motor function in the months to follow depending on the severity of the insult to the brain, acute treatment, rehab, etc.
If that patient still has a lack of motor function after a significant period of time, it's simply permanent damage from the stroke...they are not still having a stroke, they "had" a stroke
Lyme is nasty and can be hard to detect, but if not caught in time, patients can end up "scared for life" no matter how many antibiotics they are given.
Investigstion is still ongoing!
wear repellant, treat you clothes and check your body, do you best not to let the bloodsucker deer ticks get a chance to introduce that bacteria into your body!
Happy Hiking!

[handlebar]

I'm with Scotty on this issue. Looking back, I may have had un-diagnosed Lyme on one or two occasions. In the first case, it was pain in one should joint, lasting for months, which arrived and eventually disappeared without apparent cause. In the second and more recent case it led to Bell's Palsy and relatively minor but permanent neurological effects. Both of these episodes had the doctors totally baffled as to cause.

We have a neighbor and close friend who's been battling Lyme for months now. She's an RN and no hypochondriac.

Bells Palsy is a common manifestation of Lyme. Hope you got treatment.

[swjohnsey]

Why is it unfortunate that it has become highly publicized?
"canlyme.com" doesn't catch me as a very "scientific" website right off the bat!
I am a physician in an area where deer ticks carry Borrelia at a rate of about 35% in the nymphal form...
I consider myself a "Lyme Literate Medical Doctor"
I keep up on evidence based, peer reviewed publications re: Lyme Disease.
In my best medical opinion "Chronic Lyme Disease" is not yet an accepted diagnosis...
If the patient has been treated with 14-21 day of any number of oral antibiotics (usually Doxycycline) known to eradicate Borrelia, the bacteria is for all intents and purposes gone from your body...
Patients may however, have long term sequelea from having been infected...This is unfortunate, but common
An analogy I use with my patients when the subject of chronic Lyme infection comes up:
Say someone suffers an ischemic stroke and loses motor function of one side of the body...(hemiparesis)
They may recover some or all of that motor function in the months to follow depending on the severity of the insult to the brain, acute treatment, rehab, etc.
If that patient still has a lack of motor function after a significant period of time, it's simply permanent damage from the stroke...they are not still having a stroke, they "had" a stroke
Lyme is nasty and can be hard to detect, but if not caught in time, patients can end up "scared for life" no matter how many antibiotics they are given.
Investigstion is still ongoing!
wear repellant, treat you clothes and check your body, do you best not to let the bloodsucker deer ticks get a chance to introduce that bacteria into your body!
Happy Hiking!

Who we gonna believe, you are some guy on the internet whose cousin has chronic Lyme. I had to be different and got anaplasmosis in Hersey, PA. Took 'em a few days to figure out what it was. I had it for a while, Harpers Ferry to Hershey, got weaker and weaker. Trail angel finally rescued me. It took me a while to fully recover. Came back next year and started over a Springer. Interestingly, treatment for anaplasmosis is same as Lyme, doxycycline.

[rafe]

Bells Palsy is a common manifestation of Lyme. Hope you got treatment.

This happened four years ago. It was never diagnosed as Lyme. Bells Palsy isn't usually accompanied by severe pain, so it might have been Ramsay Hunt syndrome, which has a different etiology. The connection between Lyme and Bells Palsy is something I discovered on my own, quite a bit later.

The business with my right shoulder joint went on for much longer and was also never diagnosed. The onset was mysterious and sudden. There was no injury but it was painful as get-out. I had all sorts of neurological tests, physical therapy, MRIs. Months later it disappeared, just as suddenly and mysteriously. Joint pain is a classic Lyme symptom.

My PCP seems to be incredibly blasé about Lyme.

[MuddyWaters]

Joint pain is a classic Lyme symptom.



Also a classic symptom of just getting older.

All my joints hurt to some extent, especially after sitting still for long time. It hurts to change sleeping position in bed. Once they start moving they loosen up. Im a bit slow to get out of a chair. Basically I do it in slow motion.

[Traveler]

Who we gonna believe, you are some guy on the internet whose cousin has chronic Lyme. I had to be different and got anaplasmosis in Hersey, PA. Took 'em a few days to figure out what it was. I had it for a while, Harpers Ferry to Hershey, got weaker and weaker. Trail angel finally rescued me. It took me a while to fully recover. Came back next year and started over a Springer. Interestingly, treatment for anaplasmosis is same as Lyme, doxycycline.

Hypochondriacs..... always vying to one up the next one :-?

[rafe]

re: joint pain


Also a classic symptom of just getting older.

All my joints hurt to some extent, especially after sitting still for long time. It hurts to change sleeping position in bed. Once they start moving they loosen up. Im a bit slow to get out of a chair. Basically I do it in slow motion.

Maybe so, but not in this case. This happened more than fifteen years ago. Sudden onset and sudden disappearance several months later. It was one specific joint and the effect was severe, limiting the range of motion of my right arm and causing extreme pain at the limits of that range.