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Johns Hopkins Study Confirms Chronic Lyme Disease

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Posted 2/2/2018 11:59 AM (GMT -5)
Researchers at Johns Hopkins University said they have confirmed that chronic Lyme disease is "a real disorder."

In a paper published in Frontiers in Medicine, the group reported findings in 61 patients who underwent antibiotic therapy that appeared to eradicate the Lyme organism, Borrelia burgdorferi, yet still had symptoms such as joint pain, fatigue, and depression. Many of the patients also reported symptoms including severe cognitive deficits and insomnia that are not part of the constellation usually associated with what the researchers called "post-treatment Lyme disease syndrome."

/www.medpagetoday.com/infectiousdisease/generalinfectiousdisease/70896

Study:

/www.frontiersin.org/articles/10.3389/fmed.2017.00224/full

press release

/ctt.ec/R2Y31+

"Conclusion: Although physical exam and clinical laboratory tests showed few objective abnormalities, standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic, with poor health-related quality of life. PTLDS patients exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls. Our study shows that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement. As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care.


Well what can i say.... SHOCKER :P
Posted 2/2/2018 12:01 PM (GMT -5)
I saw this article. How nice of them to confirm what patients have known for 40 years now. I think they are a little behind the times at John's Hopkins.....

But thanks for posting the article!!! We all need to know!
Posted 2/2/2018 2:05 PM (GMT -5)
very interesting, thanks
Posted 2/2/2018 6:53 PM (GMT -5)
Yeah what Daisies said. This study doesn't say anything about chronic Lyme. It's all about PLDS. What it DOES do however, is denounce Wormsers bs that PLDS is just "the aches and pains of daily life"
Posted 2/2/2018 8:10 PM (GMT -5)
I dont get how Alan MacDonald can find spirochetes in 7/10 alzheimers brains but we cannot test for spirochetes in live bodies. I was so hopeful by seeing this article, but it really proves nothing. Just that people say they have symptoms....we know people have symptoms.
Posted 2/3/2018 3:32 AM (GMT -5)
I wonder what the finger vibration test is. Or how I would do on it. I got my nerves all checked out last summer and those came up fine. I do know that sitting in the car with its vibration have become a special form of torture.

I think the main positive from this study is that is shows that what was thought to be Lyme symptoms (like swollen knees or bells parsley or whatever) is not the actual reality for most of us.

I can't say that I have insomnia, but I have been on amitriptyline for close to a year now. It does help me sleep. The rest of what the study's symptoms, yeah. For the record, I fit the CDC description of confirmed-Lyme PTLDS to a T.

This study is all obvious to us, but since it is not obvious to others, it's a good first step. Next, JHU needs to find out what will help those with Lyme and continuing symptoms.

But since medicine usually gets devolved into managing symptoms instead of curing - I'd be happy right now with having PTLDS be a recognized syndrome with all the medical and disability rights. And have some management protocols. Amitriptyline for insomnia is a good one. Some prescription pain relief can be on the table. Referrals to health counseling and PT. [Actual protocols for PT so they don't break us!]. Things like that.

I feel for those who have been misdiagnosed with RA or Fibro and whatever. But at least those are names that don't always make doctors roll their eyes in disbelief. My GP is trying to be helpful, but since she doesn't know what is going on or how to treat even she sometimes falls into the "maybe it's just stress" camp. Even though I fit PTLDS to a T, it's still a "we don't know what it is, or what to do with it" thing. Getting over that hurdle is a huge leap forward, I think.
Posted 2/3/2018 1:35 PM (GMT -5)

Eiren said...
I wonder what the finger vibration test is. Or how I would do on it. I got my nerves all checked out last summer and those came up fine. I do know that sitting in the car with its vibration have become a special form of torture.

I think the main positive from this study is that is shows that what was thought to be Lyme symptoms (like swollen knees or bells parsley or whatever) is not the actual reality for most of us.

I can't say that I have insomnia, but I have been on amitriptyline for close to a year now. It does help me sleep. The rest of what the study's symptoms, yeah. For the record, I fit the CDC description of confirmed-Lyme PTLDS to a T.

This study is all obvious to us, but since it is not obvious to others, it's a good first step. Next, JHU needs to find out what will help those with Lyme and continuing symptoms.

But since medicine usually gets devolved into managing symptoms instead of curing - I'd be happy right now with having PTLDS be a recognized syndrome with all the medical and disability rights. And have some management protocols. Amitriptyline for insomnia is a good one. Some prescription pain relief can be on the table. Referrals to health counseling and PT. [Actual protocols for PT so they don't break us!]. Things like that.

I feel for those who have been misdiagnosed with RA or Fibro and whatever. But at least those are names that don't always make doctors roll their eyes in disbelief. My GP is trying to be helpful, but since she doesn't know what is going on or how to treat even she sometimes falls into the "maybe it's just stress" camp. Even though I fit PTLDS to a T, it's still a "we don't know what it is, or what to do with it" thing. Getting over that hurdle is a huge leap forward, I think.


A point well made, Eiren. You're right, and I'm one of those that rolled my eyes at this article for the obvious reasons. But, we need to make headway in any area that we can, and if it's getting PTLDS recognized as a real thing, it just may help.
Posted 2/3/2018 1:48 PM (GMT -5)

goldengoose said...
I dont get how Alan MacDonald can find spirochetes in 7/10 alzheimers brains but we cannot test for spirochetes in live bodies. I was so hopeful by seeing this article, but it really proves nothing. Just that people say they have symptoms....we know people have symptoms.

I was actually in a group that was working to get Dr. MacDonalds methods and testing "out there" - and we essentially got shut down by "the powers that be" (I can't go into specifics, but it's safe to say that outright attacks have been made against those that have tried to help).

Dr. MacDonald had a DNA probe that was proven to be 100% effective in diagnosing Lyme disease, but he could not get funding to provide doctors with this technology and training - so it eventually was no longer pursued, as far as I know. I had hope to help get this technology to every doctor in the US, and Dr. MacDonald was going to donate his time for training doctors on how to use it.

(sorry, doing my best to not rant here!!!)
Posted 2/3/2018 5:19 PM (GMT -5)
Not sure i'm understanding this. The reason Dr McDonald can use in situ hybridization to identify borrelia is because he is a pathologist. In other words, his patients are usually dead and provide ample tissue for examination. How would one translate that to clinical practice except in the rare circumstance that surgical specimens are available?
Posted 2/3/2018 5:37 PM (GMT -5)
That's why he developed a test for those of us that weren't having brain surgery in order to get a sample. He realized that there was a LOT being missed, and he wanted to help get everyone that had Lyme diagnosed so they too wouldn't have to be someone that he examined in his practice.
Posted 2/3/2018 6:40 PM (GMT -5)

Traveler said...
That's why he developed a test for those of us that weren't having brain surgery in order to get a sample. He realized that there was a LOT being missed, and he wanted to help get everyone that had Lyme diagnosed so they too wouldn't have to be someone that he examined in his practice.

Do you know how he intended to do this? I'm not sure I'm understanding how a DNA probe would be applied in this manner. What kind of tissue/fluid was he trying to apply this to?
Posted 2/4/2018 8:11 AM (GMT -5)
Just to add on to my previous post - I was googling last night and found that the chronic tendinitis I have also sometimes shows up among fibro people (interesting....). So I was poking around on some fibro sites, and here's what kills me:

Fibro: Long list of disparate symptoms. Chronic complaints. Migrating pain. Cycles of flares and remission. No clear blood test. Clinical diagnosis with no set criteria. NO KNOWN CAUSE. Here's a legitimate diagnosis and a list of therapies and prescriptions you'll probably need to take the rest of your life.

Chronic Lyme: Long list of disparate symptoms. Chronic complaints. Migrating pain. Cycles of flares and remission. No clear blood test. Clinical diagnosis with no set criteria. KNOWN CAUSE. You're supposed to be healthy now after 3 weeks of abx. If you're not you're crazy. Go away.

See the one difference there? Chronic lyme has a known cause that can show up on blood tests. What if there was no blood test for Lyme - acute or chronic? What if there was just a bunch of people who came down with systemic, chronic health complaints which don't fit into the other categories of Fibro/CFS/MS? What would they call us? "Fibromyalgia Type 2"? Fibromyalgia Type 2 is a chronic condition of unknown cause. Unlike classic Fibromyalgia it effects both men and women equally. Prevalence is higher in rural areas and people who were previously highly active before the onset of symptoms. Fibromyalgia Type 2 can be also be differentiated by a higher prevalence of arthalgia (rather than myalgia) and specific immunologic and neurologic complaints. As no blood tests are available to diagnose this condition, diagnosis must be done in a clinical setting with careful review of individual symptoms and the exclusion of other possible diagnoses."

ROFL.

But seriously, this is really sad.
Posted 2/4/2018 11:53 AM (GMT -5)

Psilociraptor said...

Traveler said...
That's why he developed a test for those of us that weren't having brain surgery in order to get a sample. He realized that there was a LOT being missed, and he wanted to help get everyone that had Lyme diagnosed so they too wouldn't have to be someone that he examined in his practice.

Do you know how he intended to do this? I'm not sure I'm understanding how a DNA probe would be applied in this manner. What kind of tissue/fluid was he trying to apply this to?

turn turn Ha ha ha - yeah, no. That's more science than my brain can follow at this point! They tried to teach me though!! It's possible you can find out by looking at all of his presentations to find that information - but it might take a 'deep dive' into research to find them all. He's not exactly popular with 'the establishment'.
Posted 2/4/2018 11:55 AM (GMT -5)

Eiren said...
Just to add on to my previous post - I was googling last night and found that the chronic tendinitis I have also sometimes shows up among fibro people (interesting....). So I was poking around on some fibro sites, and here's what kills me:

Fibro: Long list of disparate symptoms. Chronic complaints. Migrating pain. Cycles of flares and remission. No clear blood test. Clinical diagnosis with no set criteria. NO KNOWN CAUSE. Here's a legitimate diagnosis and a list of therapies and prescriptions you'll probably need to take the rest of your life.

Chronic Lyme: Long list of disparate symptoms. Chronic complaints. Migrating pain. Cycles of flares and remission. No clear blood test. Clinical diagnosis with no set criteria. KNOWN CAUSE. You're supposed to be healthy now after 3 weeks of abx. If you're not you're crazy. Go away.

See the one difference there? Chronic lyme has a known cause that can show up on blood tests. What if there was no blood test for Lyme - acute or chronic? What if there was just a bunch of people who came down with systemic, chronic health complaints which don't fit into the other categories of Fibro/CFS/MS? What would they call us? "Fibromyalgia Type 2"? Fibromyalgia Type 2 is a chronic condition of unknown cause. Unlike classic Fibromyalgia it effects both men and women equally. Prevalence is higher in rural areas and people who were previously highly active before the onset of symptoms. Fibromyalgia Type 2 can be also be differentiated by a higher prevalence of arthalgia (rather than myalgia) and specific immunologic and neurologic complaints. As no blood tests are available to diagnose this condition, diagnosis must be done in a clinical setting with careful review of individual symptoms and the exclusion of other possible diagnoses."

ROFL.

But seriously, this is really sad.

Very sad, Eiren, very sad. I was one of those that carried that Fibro diagnosis for many years - but I knew there was no doubt that something caused it- even if the doctors didn't believe me. That's also why I didn't accept the MS diagnosis I got - I just didn't fit the symptoms well enough. Good thing I didn't fall for either of those misdiagnoses either, as I would have never survived this long had I.
Posted 2/4/2018 2:12 PM (GMT -5)

Traveler said...

Psilociraptor said...

Traveler said...
That's why he developed a test for those of us that weren't having brain surgery in order to get a sample. He realized that there was a LOT being missed, and he wanted to help get everyone that had Lyme diagnosed so they too wouldn't have to be someone that he examined in his practice.

Do you know how he intended to do this? I'm not sure I'm understanding how a DNA probe would be applied in this manner. What kind of tissue/fluid was he trying to apply this to?

turn turn Ha ha ha - yeah, no. That's more science than my brain can follow at this point! They tried to teach me though!! It's possible you can find out by looking at all of his presentations to find that information - but it might take a 'deep dive' into research to find them all. He's not exactly popular with 'the establishment'.

Lol yeah I took a brief look and didn't see anything. It's honestly not even easy to find his papers without going to his website. A google search only turns up one or two. If you ever come across it again I'd love a link!
Posted 2/4/2018 2:28 PM (GMT -5)
Actually just found a poster on f1000. Seems like he's using it on blood samples mostly. That's quite perplexing as Lyme isn't really known to hang around the blood too much. Of course this could be another case of Lyme dogma perpetuated by lack of acceptance for round bodies and other non spirochetal forms. Who knows. In either case, it begs the question of why FISH was not used earlier. It's not exactly a new technology and has quite obvious benefits over fluorescent antibody. Would love to see what the research field looks like in several years as this is more widely applied. I know Aucott was talking about bringing Borrelia into the spotlight of clinical pathology. Ie how to make it a more routine part of examinations of surgical specimens and autopsies. The range of conditions it's associated with could literally explode. That would be exciting! Really appreciating Aucott more and more lately.

Also wondering why McDonald doesn't publish more often. I would love to read papers detailing his research on glioblastoma and nematode endosymbionts but all we get are posters sad
Posted 2/4/2018 4:23 PM (GMT -5)

Psilociraptor said...
Actually just found a poster on f1000. Seems like he's using it on blood samples mostly. That's quite perplexing as Lyme isn't really known to hang around the blood too much. Of course this could be another case of Lyme dogma perpetuated by lack of acceptance for round bodies and other non spirochetal forms. Who knows. In either case, it begs the question of why FISH was not used earlier. It's not exactly a new technology and has quite obvious benefits over fluorescent antibody. Would love to see what the research field looks like in several years as this is more widely applied. I know Aucott was talking about bringing Borrelia into the spotlight of clinical pathology. Ie how to make it a more routine part of examinations of surgical specimens and autopsies. The range of conditions it's associated with could literally explode. That would be exciting! Really appreciating Aucott more and more lately.

Also wondering why McDonald doesn't publish more often. I would love to read papers detailing his research on glioblastoma and nematode endosymbionts but all we get are posters sad

Just to be sure that you have seen the same things I've seen about Dr. MacDonald's research, here is the site and these two pages:

/alzheimerborreliosis.net/presentations/

/alzheimerborreliosis.net/research/

Others that have picked up some of his research and either worked with him or have done some on their own are Dr. Judith Miklossy and Researcher Thomas Grier.

I hope that helps some!!
Posted 2/4/2018 5:05 PM (GMT -5)
Yeah Traveler I saw those smile Thanks
Posted 2/5/2018 7:13 AM (GMT -5)
anyway, so to wrap up, i am really glad i'm sick with a non-imaginary disease (phew!) and wishing all the best to the medical community!!

now i have a proposal, you might wanna find a fix for it, non-imaginary sicknesses tend to require non-imaginary treatments , i've read that somewhere...

thank you in advance ...
Posted 2/5/2018 7:48 AM (GMT -5)

mpost said...
anyway, so to wrap up, i am really glad i'm sick with a non-imaginary disease (phew!) and wishing all the best to the medical community!!

now i have a proposal, you might wanna find a fix for it, non-imaginary sicknesses tend to require non-imaginary treatments , i've read that somewhere...

thank you in advance ...

Like steroids and mAb?? smilewinkgrin But seriously I don't get it. If they could do one... just ONE treatment trial using antibiotics that would actually qualify as effective against persisters and see what the outcome is they could potentially save millions on useless research grants and long term healthcare costs. I mean heck, they could use a combination treatment on people with early Lyme and just measure whether their 10-20% PLDS rates melt away. Wouldn't even have to worry much about tricky drug kinetics in late Lyme since its pre-dissemination and few of the bacteria would have had a chance to get to the nervous system. It would be easy and straight forward and would bring invaluable information about the efficacy of current drug approaches. And the drugs are FDA approved... so what gives?
Posted 2/5/2018 8:26 AM (GMT -5)
i am absolutely sure there are no trials of any kind of lyme treatment that involves more than one antibiotic, even though the research that multiple (read that >3) antibiotics are needed because the darn bug will not even die in a test tube...

they either give a person ceftriaxone for 9 months, doxy, or they start with ceftriaxone, then they continue with doxy. but never more than one drug. other drugs were tried, but not more than one at a time... why not ? TB is treated with 3-4 drugs ...
if anyone reading this forum is aware of such multi-drug in vivo study, i would very much like to see it so pls reply here with a link!

one reason is there was no real study done on these persister bugs before zhang and k. lewis came to the show. i mean there were, but they were done by low profile researchers that are not recognized as good in the chronic infection field like these two new guys are... and since the breakthrough studies rolled in since 2015, there was not enough time to run trials. right now they are running them on mice, next is humans. so probably 5 more years to wait until you will get some results in sad
Posted 2/5/2018 9:39 AM (GMT -5)
At least our illness is visible now- literally. Everyone with Lyme now has a giant red mark on their forehead from the collective facepalm this article induced.
Posted 2/5/2018 11:45 AM (GMT -5)

mpost said...
i am absolutely sure there are no trials of any kind of lyme treatment that involves more than one antibiotic, even though the research that multiple (read that >3) antibiotics are needed because the darn bug will not even die in a test tube...

they either give a person ceftriaxone for 9 months, doxy, or they start with ceftriaxone, then they continue with doxy. but never more than one drug. other drugs were tried, but not more than one at a time... why not ? TB is treated with 3-4 drugs ...
if anyone reading this forum is aware of such multi-drug in vivo study, i would very much like to see it so pls reply here with a link!

one reason is there was no real study done on these persister bugs before zhang and k. lewis came to the show. i mean there were, but they were done by low profile researchers that are not recognized as good in the chronic infection field like these two new guys are... and since the breakthrough studies rolled in since 2015, there was not enough time to run trials. right now they are running them on mice, next is humans. so probably 5 more years to wait until you will get some results in sad



This was a small study, done in a LLMD's office (Horowitz) with only 100 patients, but maybe it's what you were looking for -at least as a sign of hope? And, Bonus!!! We get to see the whole article!!

/www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.php?aid=71596&view=mobile
Posted 2/5/2018 11:46 AM (GMT -5)

BabsBunny said...
At least our illness is visible now- literally. Everyone with Lyme now has a giant red mark on their forehead from the collective facepalm this article induced.

Ha ha ha!! So true!! But, at least they finally admitted to it!!!! shocked
Posted 2/5/2018 12:21 PM (GMT -5)

mpost said...

one reason is there was no real study done on these persister bugs before zhang and k. lewis came to the show. i mean there were, but they were done by low profile researchers that are not recognized as good in the chronic infection field like these two new guys are... and since the breakthrough studies rolled in since 2015, there was not enough time to run trials. right now they are running them on mice, next is humans. so probably 5 more years to wait until you will get some results in sad

Meh, I'm not so forgiving. This particular persister phenomena might be of renewed interest but the recognition that drugs requiring active cell division failed to sterilize cultures goes back to the 40s. Round bodies have been noted in spirochetal infections at LEAST as early as '54 and have been noted for pretty much all infectious spirochetes as well as saprophytic and free living spirochetes. Often times as the dominant lifestyle. Even though not technically the same type of persister mechanism, the clinical relevance of L-Forms has been extensively studied and published decades back and was fairly instructive on the need for multipronged antibiotic approaches for chronic relapsing infections to target different phenotypes/morphotypes. I get that the application of all this to Lyme is rather "new" by comparison, but it shouldn't be generating nearly as much skepticism as it is. There is a whole lot of precedence for it. With 300,000 estimated infections a year it really should not be that hard to take an FDA approved antibiotic against persisters, find some volunteers and conduct a small scale trial. Brorson reported the efficacy of tinidazole against round bodies in 2004. I'm not saying that's the silver bullet, but the fact that nothing has been done with that in 14 years is egregious.
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