Topic: Please tell me about BLAB - Bad Lyme Attitude Blog
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Hi all, Some of you may read the BLAB blogs -- this week's I find particularly interesting, esp. as it addresses immune deficiency. Although the first half of the article is beyond my scientific understanding, the second half about immune suppression seems to agree with the path my body has taken.
If you have time, please visit this site.
(I really am not looking for a heated discussion, just want to know if this writer has street cred -- and does he seem to be right -- or not?)
Do you know who the author is? Why does he use a pseudonym?
Is he in anyone's pocket? (Steere? IDSA?)
If you are 'Beaux Reliosis,' i would love to hear from you. I want to understand your viewpoint, but I would like to know your affiliations. You could PM me if you want to keep it confidential.
Does anyone have any info on this site?
Posts: 1173 | From USA | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, they start off with:
"Lymies. I want to empower you, but this won’t be easy . . . ."
Why how we are seen by others in the world, not just by those in our inner circles, matters so very much. -
[ 08-01-2016, 06:23 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I did see they ask for readers' email addresses.
Best to not give any anonymous blog an email address though, to "follow" as you don't want them to know who you are if they don't tell you who they are.
If they are serious, they should team with the established lyme educational and awareness organization. You might contact those to see if they know who is behind this. The top two of many who might know:
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
He almost lost me at "In all but a few outlier cases, if you are CDC-positive, you’re not really sick."
I did read the whole thing. I do agree that immune suppression is part of the puzzle. I too have low IGG that I didn't have pre-Lyme. I would LOVE to know what to do about it. (So far my immunologist doesn't think I'm bad enough off to warrant IVIG.)
But I disagree with the author that this is all a big ILADS conspiracy. I personally think ILADs doctors are doing the best they can to figure this all out. More research, more treatments, etc are obviously needed. But I don't fault ILADs, as this author clearly does.
Posts: 1737 | From Virginia | Registered: Aug 2011
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
This is quite interesting and rather confounding.
Keebler, I totally **understand and respect** that the term,"lymies," is offensive to you, as it is to many people I know. Playing devil's advocate, some people I know find it to be a non-offensive term and feel it gives them a sense of being in the Lyme community/having support. Me personally, I have Lyme, it encompasses a lot of my life, but I am not Lyme. I admire your ability to stick to your principles and make them known, which you always do in a respectful manner (thank you).
NOW, back to the website: Like I said, I find it interesting and confounding.
Some things seem to support the Lyme community, such as:
" . . . I had a really crappy job for six years. Part of what made it so bad was the lack of communication, lack of accountability and lack of balls when difficult news needed to be shared. Everything was lied about, hidden or sugar-coated. The company’s leaders promoted a culture of disrespect, in which we plebes weren’t good enough or smart enough to handle the truth. It’s the same way with Lyme. Go to just about any “support group” or nonprofit Website and you can experience this culture, where those in power decide what the truth is, and what you’re capable of handling intellectually and emotionally. . . " https://badlymeattitude.com/2016/07/29/punch/
Is it me, or does it seem contradictory and confusing? At the same time, we don't know who this person is, what he/she has been through and where he or she is coming from.
I totally agree with Keebler about (I'm paraphrasing-i just figured out you can't use the quote feature unless you do it first) that it's best not to give an anonymous blogger your email address, and if they were serious, they should team up with established Lyme organizations. Very wise advice, Keebler. I recommend proceeding with caution and not giving any personal information.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
WOW I need to go there in the morning not know.
i think this place got the real $hit going on.
The web sight will soon be blasted by the government .
You will never see it again.
This will be GONE soon.
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "me" - It's more about how we are seen / treated by others in the world, not just by those in our inner circles (not matter how kind & endearing that term may be to them).
Nothing is closed on the web. It's how what it seems we call ourselves (often used in the midst of our foibles) that matters so very much regarding respect for those who are so very ill. It can harm us in many ways.
Do you think the Senate or Congress - or now the Gov. of MA wants to fund research for "Lymies"? No, they don't. They don't take us seriously.
If they think we are all fine at being called a cute nickname just for the fun of it, we are conveying the wrong message.
And that is specifically what some authors who have written about lyme patients say / think / put out there in their articles - that since doctors won't take us seriously, we've taken to forming "Lymie" clubs. Some IDSA doctors have written of us in that term, as a deliberate insult.
There is one post in that set with further details but there is more than one author / writer who has conveyed this to the general public. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Keebler, I totally understand and *agree* with you. Honestly, I didn't think much of the term (and admittedly used to actually use it having no idea it is offensive, thinking it's what we called ourselves) until someone pointed out the implications of it on here once. Then, I realized how it could be detrimental. Very detrimental. Since then, I do not refer to myself or others as "lymies."
My intent was to point out that some people see the term differently and don't *realize* it can be offensive and detrimental. I was playing devil's advocate because the site confused me so much, and the blogger could have meant it as *either* condescending or as a term he/she is okay with and doesn't realize its implications and offensiveness. It seems kind of like other parts of the site--some things swing one way, and some things swing the other way.
***I would never, ever mean to offend you, and I certainly apologize if I did so unintentionally. ***
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "me" -- thanks. I don't / didn't take your comments as offensive at all (yet did misinterpret some aspects so thanks for your note.
Your comments did not offend; they -- I just don't have the words. You just stated stuff.
My comments on this matter might be offensive to some who enjoy this particular nickname of camaraderie & lightness. And that would more likely be due to the inability of my writing. I cannot say things as clearly, most of the time.
What I will fight - fiercely - even in my own small inept way . . . is how the truth of those who have lyme is conveyed to and seen in the world so that respect, dignity - and true medical support - might someday be the norm. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Keebler, Whew! Thanks. And like I said in my earlier post, I truly admire how you stick to your principles and do so in a respectful manner.
I'm relieved!!!
I'm still very confused about the website . . .
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Trojan Horse? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Keebler, Very well could be . . . are you talking in a metaphorical sense or computer sense?
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
To be honest I think this is nonsensical raving. This person has been talking about "post-sepsis synrome" on her blog forever and a day, and as far as I know she is the only one who has made this argument or created this analogy.
Many, *many* bacteria create endotoxin. In fact starch in the gut creates endotoxin. Yes -- endotoxin is immune suppressive because it challenges the immune system and wears down the armory. This isn't just true of Lyme; there are plenty of others -- e.coli, campylopbacter, quite a number of the gram negatives.
That a Lyme infection causes "immune suppression" actually is not quite accurate. In the background - for example in the complement system and in cytokine generation, Lyme is QUITE an activator of the immune system; in fact it's more often considered an inflammatory disease, not an immune-suppressive one.
I have chronic Lyme and my immunoglobulins AND subclasses are totally adequate. If I were *sick with Lyme* and co-infections, though, for ten or twenty years, I might actually need IVIG because the body can't just keep churning out inflammatory immune responses.
I think this person has latched onto one part of the science of bacterial infection and turned it into her rage attack that she got sick.
The fact is that in "post sepsis syndrome" the immune system DOES recover over time. The key is to shut down active infection and *let* it recover. My assessment is that if this woman is still losing immunoglobulins, she still has active Lyme.
Posts: 2057 | From Florida | Registered: Feb 2015
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
I wish I understood the blog better. I did google some of the assertions about EBV, and they seem to be correct, from what i can tell -- that EBV can permanently damage the way B cells work.
And since my own immune globulin does not produce decent antibodies to *any* (ie zero) of the 13 pneumonia strains i was tested for, and since my EBV titers have been sky-high for a couple decades....
I think the author may be right about a lot of things -- but I don't have the brain power to attempt to understand / researh most of what he/she says .
Let's suppose for a minute that persistent Lyme Disease is really 'only' an immune deficiency -- that might explain why six months of immunoglobulin have helped me more than any antibiotics I have tried.
If it is true that acquired immune defiiencies are causing most of our problems, then why won't the drugs that HIV /AIDS patients take work for us? (I know, I know, my brain is showing, I mean that hole where it used to be!
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Jordana
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posted
What they did with HIV was to stop the replication of the virus while *also* guarding against opportunistic infections with antibiotics. HIV people take prophylactic bactrim especially in the winter months to guard against a certain kind of pneumonia.
IVIG is truly awesome - I'm so glad it's helping you. But you know if you did guard against opportunistic infection and kept Lyme in check, there's a chance your IG's would come up over time.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
If I am understanding this correctly (Big IF), this sounds to me awfully similar to a prevalent ME/CFS theory...Essentially, a pathogen comes around and roils up one's immune system until it implodes. Then, Voilla! Instant non-HIV AIDS, or a condition that at least approximates it in abnormal presentation of antibodies.
In the ME/CFS theory, it doesn't have to be Lyme that corrupts the immune system; it can be virtually any infection, e.g. EBV, Coxsackie A or B, enteroviruses, etc.
One Columbia U virus hunter suggests that the cytokine profile in these cases shifts dramatically at around the 4rth year mark - at that point, the immune system appears to almost burn itself out.
Didn't some of the Old Guard, back in the 90's, promote that, since they maintained there was no Lyme post treatment, what patients thought was Lyme was either CFS or Fibromyalgia? (It's fun to recall the chronologies involved here...First Lyme, then CFS and Fibro)
Here's the kicker: I can think of no reason a person cannot have Lyme AND have this condition. They are not mutually exclusive. I know several who have been diagnosed with both.
When in doubt, I remind myself of Occam's Razor.
I also remind myself of that 1983 study which bifurcated Lyme late manifestations into major and minor - the minor ones being every bit as serious as the major ones for many patients, only it seems patients could not be cured of them.
Posts: 228 | From Unitied States | Registered: Jul 2015
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Not sure I got the main point. I can count on one hand the number of times I have gotten sick with a cold or sore throat etc. in the 13 years since Lyme diagnosis.
If what the blogger wrote was true, wouldn't I get sick with more illnesses? And since I am a teacher I am really exposed to everything.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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posted
The ME/CFS theory suggests the immune system is stuck in overdrive. Many if not most pwME report almost never coming down with the flu or colds etc since the disease hit.
ME/CFS is not Lyme (definitionally), but Lyme could trigger ME/CFS.
Lyme can also disrupt the immune system.
This gets complicated very fast; controversial, too, since two contested conditions - at least! - are involved.
Posts: 228 | From Unitied States | Registered: Jul 2015
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Jordana
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Member # 45305
posted
well I don't think there's much that's new in what she's saying to understand.
What she's saying is that Lyme is NOT a persistent infection. It's a product of self-perpetuating endotoxic shock.
This is so close to the argument for post treatment Lyme disease ( there is no more bug, this is an autoimmune reaction) that there's not much point in responding to it seriously. I have seen so many of these ideas coming out of pubmed -- it's not spirochetal infection, it's cytokine cxl13; it's not spirochetal infection, it's "genes" that have been switched on and won't turn off, etc.
So...I don't believe in any of that personally. I think the thing the establishment will not say, and is afraid to say, is that not only is Lyme a persistent infection; but there are no drugs available to adequately treat it.
Our LLMDs are doing what they can do muscle down the infection with inadequate medication; much like mainstream docs do for MRSA and other resistant infections. If you have a resistant infection, the body is going to respond with all kinds of interesting defenses and that's great to know but studying them doesn't solve the actual problem.
You either believe this or not. If you don't, if you think there is some other reason than persistent infection in Lyme, then this woman is writing a theory that is kind of appealing.
But if you do believe it then she's wasting everyone's time, just like the NIH which is studying this and that cytokine and immune system patterns and so on.
Where is the gutpunch about Lyme? In this person's opinion there is no Lyme.
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At the same time, we don't know who this person is, what he/she has been through and where he or she is coming from. 
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