CFI Spinal Fluid study from Lipkin and Hornig is out.

[MeSci]

I am a licorice addict. I wonder if this is related, but then again most on my Father's side of the family are licorice addicts. Licorice tea is drunk by a few of us.

I love licorice, but don't have it now as it can raise blood pressure, and I already have hypertension.

 

[alex3619]

I love licorice, but don't have it now as it can raise blood pressure, and I already have hypertension.

Ditto.

 

[MeSci]

Goldstein talked about low IL-1b in the ME/CFS brain, oh, 20 years ago in relation to low CRH (corticotropin releasing hormone) which he viewed as a cardinal feature of this illness. This is one crucial intersection between the immune system and the HPA axis. IL-1b modulates CRH and vasopressin (antidiuretic hormone) release so this would explain a lot. (It's also the opposite of what's going on in depression, I would add.)

Sorry if this has already been answered, but I have fallen behind on this thread for some reason (don't seem to have received notifications). Do you know if there are any studies showing IL-1beta modulating vasopressin in humans? All I can find are rat studies, and last time I looked I wasn't a rat!

I am particularly interested in this, as I suffer from polyuria but have never had my vasopressin levels tested, despite suggesting it to my GP when I finally turned to him in desperation for a solution - a little over 3 years into my illness when it was becoming seriously problematic. He considered it an 'odd' thing to test for. I have had major on/off battles to get desmopressin prescribed.

 

[Sidereal]

Do you know if there are any studies showing IL-1beta modulating vasopressin in humans?

You'd like me to produce human studies where IL-1b is injected into the brain to see what happens to vasopressin (and CRH)? This sort of knowledge comes from animal research I'm afraid.

 

[MeSci]

You'd like me to produce human studies where IL-1b is injected into the brain to see what happens to vasopressin (and CRH)? This sort of knowledge comes from animal research I'm afraid.

I'm afraid results from non-humans correlate with results in humans on average about 50% of the time, so one might as well toss a dice. EDIT - I mean coin, not dice.

No - of course I don't expect chemicals to be injected into the brains of living humans. I don't consider it acceptable for other sentient creatures either.

But if we have measured levels of cytokines in human CSF, surely we could also measure levels of vasopressin and CRH and at least obtain correlations, if not definite causation.

There are also indirect ways of assessing a person's ability to produce vasopressin, e.g. fluid deprivation tests, plus in vitro tests, although the latter are far from ideal.

"...it underrates the ingenuity of researchers to suggest that medical progress would have been seriously impeded had animal experiments been illegal, although a different strategy would have been required. It is the skill of the scientist to find a way round the intellectual, technical and ethical limitations to investigation."

Harold Hewitt, former animal researcher.

 

[Gijs]

Does this cytokine/fluid study prove encephalitis?

 

[halcyon]

Does this cytokine/fluid study prove encephalitis?

I don't think so, no. It's interesting that CXCL10 is noted to be increased in viral meningitis and encephalitis, but it being elevated here isn't enough to prove that's why.

 

[halcyon]

It is potentially interesting to note that beyond its function as a chemokine, CCL11 can also induce expression of SOCS (suppressor of cytokine signalling) genes, which as the name suggests, causes a downregulation in the expression of cytokines by various cells in various ways. In an animal model of MS where encephalomyelitis is induced, it was found that the animals with higher expression of CCL11 had a better outcome, likely due to reduced neuroinflammation. In that model is was found that neurons mainly produce the CCL11.

It's tempting to wonder if something similar is happening in ME, where CCL11 is being released in an attempt to downregulate cytokine production in the CNS and protect the brain from excessive neuroinflammation due to persistent immune stimulation. The side effect of this being disturbed homeostasis due to overshooting the suppression and interfering with processes that rely on cytokines for normal functioning, as mentioned earlier in the thread. Although I guess if this were the case, you could expect MS patients to have the same symptoms as ME, but perhaps it matters where in the brain the suppression is occurring.

 

[MeSci]

Or, "I think it's crap, but I don't feel it's in my best interest to say so right now."

My guess is that W can't afford not to comment, being the UK's expert on CFS/ME and all , but knows he can't acknowledge it's sound research without destroying his life's work. He's in a bind -- he can't say it's good research, but he can't knee-jerk dismiss sound research from a researcher as major as Lipkin. He needs more time to dig down and look for ways to pick it apart because there's no obvious flaws. So, it's "interesting." It will be "interesting" to see where he decides to stand on this research after he's had time to scheme with his cronies.

We'll know we've got them running away with their pants around their ankles when we start hearing stuff like, "We were using the best information available to us at the time." We all know that's a crap excuse for their abuse and willful ignorance, but "I was doing the best I could at the time" is a classic excuse used by abusers to try to get out of responsibility for their earlier actions. Sadly, a lot of people in the mainstream will buy that excuse and W and Co will get off relatively easily.

A politician's favourite is "With the benefit of hindsight..."

 

[MeSci]

My ESR and alkaline phosphatase have been outside normal ranges every time they were measured since I got sick. The two most consistent lab results for me.

Are they elevated? If so, have you been assessed for possible Primary Biliary Cirrhosis? (There are threads on this.)

 

[Sean]

Elevated.

I have had standard liver function tests a number of times, including an ultrasound, and nothing obvious turned up, apart from the raise alkaline phosphatase. The doc did mention fatty liver disease, but that was in the context of a general preventative approach given my age etc, just making sure about diet and alcohol consumption, etc, none of which was an issue in my case.

Also, I have had ME/CFS for over 3 decades now, which as best I can tell is a very long time to survive PBC without treatment or any major signs like raised bilirubin.

But I will mention it to the doc next time I am in there. See what he says.

 

[MeSci]

Now I understand why my doctor tested me for eosinophils (EOS) a couple of months ago and mentioned that this may be an important cytokine to consider. My numbers for eosinophils were quite elevated, and she mentioned that when they started to test for EOS in ME/CFS patients, they noticed these numbers often came very high.

All my eosinophil results seem to have been normal. Basophils have been high twice and neutrophils high when I was hospitalised with severe hyponatraemia.

 

[MeSci]

Aach, I apologize if I sounded strident, Eeyore. Same as with ME/CFS, the Lyme story isn't restricted to labs and clinical evaluations or research. There are back stories, massive labyrinths of them.

For instance, 30 years ago, researchers found that antibiotics couldn't cure a lot of Lyme patients. Reports are that in a seminal study, Lyme manifestations (post-treatment of acute cases) were divvied up into two groups: Major manifestations, which included Myocarditis and meningitis and resistant arthritis (for a total of three), and Minor manifestations, which only totaled five in number, and included headaches and facial palsy and brief arthritis without swelling, and tachycardia, and arthralgias.

That's it. Five "minor" symptoms. Any idea how many Lyme symptoms they left out? Symptoms like Cognitive decline, and vertigo, and extreme fatigue, and muscle weakness, and breathlessness, and peripheral neuropathy and...well, you get the gist.

So, they didn't include what many believe to be some of the most debilitating of symptoms. They only added those five "Minor" symptoms.

Why were they called Minor, regardless of their severity or intensity? Good question. All I can tell you is that the authors said that once they had bifurcated the symptoms, they were then able to show that their antibiotic therapy "cured" or prevented the three "Major" symptoms.

And those five Minor symptoms that seemingly were not judged by degree or intensity? Well, up to 50% of patients reported treatment failure. That's 50% remained sick.

Sooooo, if the symptoms had not been split, that means that the touted abx cure - tetracycline btw, just like today's recommended doxy, only at FIVE TIMES current recommended dosages - would only have cured about half of the patients. But, now it could be accurately (albeit somewhat disingenuously) reported that recommended abx therapy cured all major manifestations of Lyme.

When you read about how recommended abx cures almost all cases of Lyme, keep that little backstory in mind. And remember that there are a lot more where that came from.

I am embarrassed to confess I can't remember how to cut and paste links and stuff.

But if you're interested in that back story, check out the July 1983 Annals of Internal Medicine study by Steere et al. It's behind a paywall.

I'm sure many of us would like to see your links. The easiest/quickest way is to just select the address of the link in your browser, right-click, select 'copy' and paste it here.

 

[duncan]

Well, I purchased the study, but I'm not sure I have the legal right to reproduce it. It's there for anyone to see for $29.95 in the July 1983 Annals of Internal Medicine. Also, Pamela Weintraub writes about the same study - and hints at its import - about a quarter of the way through "Cure Unknown."

It really is a seminal piece of work, in that it both paved the way for claims that Lyme is easily cured in the vast majority of patients - although it isn't necessarily so. Also, the study for the first time that I found, suggested the pathogenesis for continued symptoms in at least some of the patients who participated, was possibly psychosomatic in nature. It provided, imo, a platform for a lot of misdirections at the expense of many sick people.

But thank you, MeSci, for the instructions on cutting and pasting, and hopefully they will come in handy going forward.

P.S. What's a browser?

 

[MeSci]

Well, I purchased the study, but I'm not sure I have the legal right to reproduce it. It's there for anyone to see for $29.95 in the July 1983 Annals of Internal Medicine. Also, Pamela Weintraub writes about the same study - and hints at its import - about a quarter of the way through "Cure Unknown."

It really is a seminal piece of work, in that it both paved the way for claims that Lyme is easily cured in the vast majority of patients - although it isn't necessarily so. Also, the study for the first time that I found, suggested the pathogenesis for continued symptoms in at least some of the patients who participated, was possibly psychosomatic in nature. It provided, imo, a platform for a lot of misdirections at the expense of many sick people.

But thank you, MeSci, for the instructions on cutting and pasting, and hopefully they will come in handy going forward.

P.S. What's a browser?

I wonder if it is discussed or critiqued online anywhere.

A browser is the program that you use on the internet, e.g. Internet Explorer, Mozilla Firefox, Google Chrome, etc.

At the top of the page there should be an address line, which you can either select and copy using your mouse or whatever you use on your device, or in my case (with Firefox) I just click on it and it highlights automatically, then I can do the right-click/copy bit.

EDIT - is it this one? If so we can then do an internet search for articles or critiques about it using the name of the study and authors' names.

In the UK you can buy journal papers very cheap from local libraries, and I can get them free due to being on Working Tax Credit.

 

[MeSci]

Just done a quick search and found these other links on Steere - he has continued publishing. There is this Wikipedia article, and this paper that found that a high proportion of subjects had been misdiagnosed with Lyme.

This article looks interesting too.

Maybe best discussed in a Lyme thread? There may already be discussion on Steere.

 

[duncan]

Thanks for looking, MeSci. And no, that is not the article, although the first one you found is interesting from a historical perspective (note the emphasis on Lyme arthritis - Steere is a rheumy). The second is kind of cool too - it is purported that Steere hired a public relations firm to improve his image, and this may have been part of that process.

Steere has his signature on literally hundreds of studies, I suspect. In much of the Lyme patient community, he is held with the same brand of, um, regard as Wessely is within the ME/CFS community.

So Firefox - which I use - is a browser. Who knew?

ETA: I thought I had mentioned the name of the article in question. I know I did on another forum. My mistake. It's "Treatment of the Early Manifestations of Lyme Disease" in the July, 1983 Annals of Internal Medicine, pgs 22-26. Authors: Allen C. Steere M.D., Gordon J. Hutchison M.D., Daniel W. Rahn, M.D., Leonard H. Sigal, MD., Joseph E. Craft, M.D., Elise T. DeSanna B.A., Stephen E. Malawista, M.D.

 

[MeSci]

Thanks for looking, MeSci. And no, that is not the article, although the first one you found is interesting from an historical perspective (note the emphasis on Lyme arthritis - Steere is a rheumy). The second is kind of cool too - it is purported that Steere hired a public relations firm to improve his image, and this may have been part of that process.

Steere has his signature on literally hundreds of studies, I suspect. In much of the Lyme patient community, he is held with the same brand of, um, regard as Wessely is within the ME/CFS community.

So Firefox - which I use - is a browser. Who knew?

Can you give the name of the study and the main author for the paper you are talking about then, please?

This is the page of the journal for July 1983:

http://annals.org/issue.aspx?journalid=90&issueID=19561&direction=P

 

[MeSci]

Thanks for looking, MeSci. And no, that is not the article, although the first one you found is interesting from a historical perspective (note the emphasis on Lyme arthritis - Steere is a rheumy). The second is kind of cool too - it is purported that Steere hired a public relations firm to improve his image, and this may have been part of that process.

Steere has his signature on literally hundreds of studies, I suspect. In much of the Lyme patient community, he is held with the same brand of, um, regard as Wessely is within the ME/CFS community.

So Firefox - which I use - is a browser. Who knew?

Ah - this must be it.

 

[duncan]

No, but another very cool study. Look who wrote it. Willy Burgdorfer himself.

I love reading the history. It's hard to disentangle oneself from all the clinging vines and thickets that characterize today's Lyme and ME/CFS worlds. If you can dig up the kernels of deviance, you can see the thorn bushes for what they are, and more nimbly discern the pricks.