Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
May I add, many thanks to the authors for their very hard work!!! And for not punching me out for asking them day after day when they will be ready! HA!
surprise
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Member # 34987
posted
It's beautiful. Dispels the deadly myths of 10 days of Doxy on the outset and all is well.
I am not critical, I'm not, but I guess I was hoping it would be written like the Burrascano guides.
There is absolutely nothing about treating co- infections in this guide. No co- infections information whatsoever.
So, not sure what to think-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You are right, surprise. The first time I saw the original ILADS guidelines I said the same thing. HA! But...
These guidelines have so many wonderful qualities and uses. Unfortunately, one of them is not providing specific treatment recommendations like Dr. B does in his document.
I can't possibly list all the uses for them now and explain how they will help all of us (mashed potatoes for a brain today), but to respond to your concerns I'd simply say this document provides the doctors the scientific justification for being able to treat you in the best way possible.
I still haven't dug into them word for word yet, but a doctor pointed out the 2nd part is amazing, priceless, in how it debunks the IDSA's old garbage in a total and complete fashion.
In other words, we've known the IDSA guidelines are not only total junk, they are dangerous. This one document blows them out of the water.
I'll share more later after I can dive into them with a clear brain.
In the meantime, we still have Dr. B's amazing guidelines as an actual reference guide.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
A nice step in the right direction.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Also disappointed that the guidelines only cover lyme and do not cover coinfections.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I almost feel like these guidelines were made with the intent to provide the anti-lyme average MD, a zero-doubt base for the lyme facts.
Instead of black and white, I saw a lot of "grey" wording, which doesn't draw a strong line in the sand like the treatment guidelines.
However, I think this is good, as it is neurtral "sounding" but still has absolute facts.
I like the subetly of these guidelines. I think they will help turn the naysayers into having more open minds.
In the meantime, and I know these docs work so hard, and I appreciate what they are doing, it would be great if a few more docucements regarding coinfections came from ILADS.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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posted
When they have time.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ILADS International lyme and associated diseases society
ASSOCIATED DISEASES!
???
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So very sad to see such negative comments. The work that went into these guidelines was incredible and we are lucky someone bothered to do it- and for free- and with the IDiots throwing rocks at us the whole time.
The guidelines were not designed to provide info on treatment protocols for any or every tick borne disease.
They were designed to lay out what we do and don't know, so you all won't be restricted to 2 weeks of doxy (period), a pat on the butt and a kick out the door when you are deathly ill.
And if you get one treatment more than the two weeks, your doctors won't be fried for helping you.
It also disputes all that has ever been published by the IDSA (garbage), and kicks insurers in the head so they have no long-standing basis for denials.
It is disproving what you all have had to live with over the past three decades with NO studies to back up what you are doing for treatment.
They can only go by what is published, they can't make up stuff like take cats claw for this or sit in a sauna for 25 minutes a day. There is nothing to back that up.
posted
I'm very happy and thankful that ILADS guidelines came out for Lyme disease again - much needed, and thanks to the work done on this.
However, so many people are presenting with co-infections as well that I think the good doctors who worked on this document need to go for round two and add to their National Clearinghouse recommendations how they advise detection and treatment for the most common co's.
So what I hear you saying, TC, is that they have to refer to published studies? They can't go by their clinical experience treating co-infections? I'm a little unclear about the issue. All I know is it appears to be the norm that people usually present with co's as well these days.
[ 08-02-2014, 03:27 AM: Message edited by: Robin123 ]
Posts: 13117 | From San Francisco | Registered: May 2006
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For all you internet wonks, here's a way to spread the news about the new ILADS guidelines from the comfort of your armchair or wherever you play with your iphone.
Click on your state and choose a city -- the paper's name is followed by several letters. Each one will take you to a different place, e.g. (F) takes you to the paper's facebook page. (T) to Twitter.
Sometimes you can Message them but not post. Do that.
If you want a Twitter message, this will fit (with the URL): Too many patients fail standard treatment for Lyme. New guidelines offer a different approach.
Repeat!
Let us know how many you do! This is good news, we should let the world know.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Do the guidelines address what to do after you've bankrupted your family seeking treatment, have been to the best llmds and despite that are worse off then when you began treatment?
Skip the happy talk about co-infections not being addressed. For many of us no treatment for coinfections=no possibility of getting well.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Dilly i have friends doing surprisingly well on buhner tea for less than a few hundred dollars a year
Its hard to do it if you are foggy but worth getting a friend to help you get organized to where you can follow thru
One is doing better on this than abx
Im sorry your still suffering
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Thank you, LPK.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
If you read the paper, the authors state very plainly that they addressed three clinical questions.
How to treat a tick bite. How to treat a bulls eye rash. How to treat persistent symptoms of Lyme disease.
They also state that they intend to publish more articles on more topics in the future. My guess is that they have already started writing these articles and that at least one of those documents will include co-infections.
I see no indication in this document, that ILADS is backtracking on their emphasis on the importance of treating coinfections.
Patients have to realize that because of the extreme politics surrounding anything to do with Lyme disease in the medical community, the peer review process is stacked against any publication supporting clinical judgement in the treatment of Lyme disease.
It took several years to get this paper answering these three questions published. Getting this high quality evidence-based review published raises the credibility of ILADS tremendously and lends more weight to all of their positions.
Some of the critical positions supported in this paper include placing a high value on clinical judgement and shared decision making that includes consideration of patient values.
Having a daughter who has been diagnosed with four tick-borne illnesses, I know about the importance of treating coinfections for recovery.
I also understand just how incredibly important the publication of this paper is to changing the whole dynamic of how all tick-borne illnesses are treated and for getting insurance coverage for extended treatment.
To me it is clear that this publication is a giant leap forward for patient rights to effective treatment.
Please do what you can to bring attention to this paper in the press. Phyllis Mervine has provided information on how too reach a large number of newspapers using the www.usnpl.com website.
I would also encourage readers to write to their local newspaper and tell them how newsworthy and important this paper is.
................................................
breaking up the text for easier reading for many here -
posted
In order to be published in a medical journal, this paper survived the input and criticism of over 25 reviewers and meets the highest standards for evidence-based clinical recommendations. As such it can not be easily dismissed. It was not published just because ILADS said so.
posted
ILADS Recommendation for treating an EM rash:
Recommendation 2b:
Clinicians should prescribe amoxicillin, cefuroxime or doxycycline as first-line agents for the treatment of EM.
Azithromycin is also an acceptable agent, particularly in Europe, where trials demonstrated it either outperformed or was as effective as the other first-line agents.
Initial antibiotic therapy should employ 4–6 weeks of amoxicillin 1500–2000 mg daily in divided doses, cefuroxime 500 mg twice daily or doxycycline 100 mg twice daily or a minimum of 21 days of azithromycin 250–500 mg daily.
Pediatric dosing for the individual agents is as follows: amoxicillin 50 mg/kg/day in three divided doses, with a maximal daily dose of 1500 mg; cefuroxime 20–30 mg/kg/day in two divided doses, with a maximal daily dose of 1000 mg and azithromycin 10 mg/kg on day 1 then 5–10 mg/kg daily, with a maximal daily dose of 500 mg.
For children 8 years and older, doxycycline is an additional option. Doxycycline is dosed at 4 mg/kg/day in two divided doses, with a maximal daily dose of 200 mg. Higher daily doses of the individual agents may be appropriate in adolescents.
[ 08-04-2014, 02:41 AM: Message edited by: Robin123 ]
Posts: 41 | From usa | Registered: Nov 2012
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lpkayak
Honored Contributor (10K+ posts)
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posted
Ok...i do respect ilads but this is complicated. I know i did not imagine doxy should be taken 200 mg 2 x a day for 4-6 weeks
I didnt make this up. There are reasons. They may not be in 10 yr double blind studies yet. In a way that is a good and ethical thing because if there was such a study it woud mean half were treated and half werent
So maybe what i heard is based on informal research done by intellugent, long term hard working llmds-those in the trenches saving us one by one
Over and over the theories of the first llmds have been proven true. I experienced it myself. These guys are not dummies and most of us owe them a huge thank you for risking their livlihood to save us.
I know im out of line. I should take this and start a new thread but i cant now...mobility and computer problems.
Ilads has other problems too...referring to docs who are not lyme literate
And they know i. And are trying to fix it.
My frustration comes frim being here...seeing ppl who need the right help now...everyday...friends...family...CLOSE family...young ppl whose families will be forever changed because they are not given the correct information
Ive accepted that i am going down because i didnt get the right tx for 15 years. But my sacrifice should not be in vain.
My kids and grand kids should not have to go thru what i am going thru
Im going to push "add reply"
I know the moderators will probably have to delete this
I wish someone would copy and paste this to an appropriate place. I think this is a conversation we need to have
I do understand the need for ilads and respect their work.
Im still frustrated
Sorry tin
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
quote:Im still frustrated
Me too....
I'm sure the mods will not delete this, you're not out of line.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Not deleting! You have a right to express your opinion.
My personal experience from going to support groups is that everyone is different and needs to discover what is going to work for them. It's literally trial and error sometimes. And to work with a doctor you're comfortable working with.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Robin,when you say"that everyone is different and needs to discover what is going to work for them. It's literally trial and error sometimes. And to work with a doctor you're comfortable working with."
I am assuming you are talking about chronic Lyme,or does this include acute Lyme as well,like how to treat a bulls eye rash?
Posts: 41 | From usa | Registered: Nov 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
It seems to me that treating the whole ball of wax would be very nearly impossible in one paper. The number of coinfections is not just the big 3, it might be as high as ten. And we know that when these diseases are missed for a long time, they do damage that then has to be compensated for. This is why tickborne diseases are complex in their entirety.
So, keep that in mind when missing some things you were hoping to see here.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I for one think that the ILADS did a great job about how you treat an EM rash.They are easy to print up and give to your regular doctor if you ever get an EM rash.
Posts: 41 | From usa | Registered: Nov 2012
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Kudzuslipper
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Member # 31915
posted
I think this goes a long way to demystify Lyme treatment... As Greta said for the first line pcp's. The more first line drs treat a bite or EM with 4-6 weeks and longer as they see fit the less we will see chronic Lyme.
This doc gives drs the permission to use their best judge and to weigh the good with the bad with treatment. And it encourages discussion with the patient.
I also feel once Lyme is demystified the treatment for the co infections will fall into place.
I thank ilads for taking this stand!
Posts: 1728 | From USA | Registered: May 2011
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posted
That's just great.Now a person has three guidelines to choose from.Why would the ILADS put someone in that position?
If the ILADS thinks people will be put off correct treatment,then why put them out there?
I have only had acute Lyme(a couple of times)and the new ILADS's guidelines worked for me. 2 weeks of Doxy wasn't enough and I needed more.Lucky for me my doctor gave it to me and it cleared it up without any problems.But that is just me.
lpkayak,you know the only way you are going to get treated using DR B's guidelines is by a LLMD.I have never been to a LLMD so can you tell me how would most LLMD's treat you if you went to their office with a bulls eye rash?Would they automatically treat you for co infections as well?
Posts: 41 | From usa | Registered: Nov 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Rz...i am only talking about treating bullseye rash with correct dose of doxy to prevent ppl going chronic
I am not talking about going to llmd or even treating coinfections
But since this conversation is getting confusing and stressful im going to delete my posts
Others are much better.with words than i am
My contribution will be to pray sick ppl get the correct information and treatment
My frustration comes from er docs treating em rash with one 100 mg pill of doxy and telling patient they cannot get lyme
And all the other docs who treat according to elisa results and all the other wrong info that is out there
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Rzh1, to answer your questions, yes to trial and error also for initial treatment for some of us, like I have a lot of allergies - I'm allergic to doxycycline, penicillin and many other meds.
I would have to take it step by step to see which Buhner herb, for example, I would be able to handle to treat a new infection. Many go an herbal route, for example, as there are many who cannot handle antibiotics.
As it was, I put myself on my own abx when I first found out - clindamycin - because I knew I could take it. I took it successfully for 5 years before it wouldn't work anymore, but it still does work for other infections - so that part is good news.
And that's me - others are not helped by clindamycin. It's bacteriostatic, btw, not bacteriocidal - holding the line, not killing it. But it was the best I could find for me.
Now I take turmeric powder to keep the inflammation down - ie - treating symptoms with complementary medicine.
That's what I mean by trial and error for everyone. Most people can take doxycycline and that's a good thing.
Second, you say ILADS makes for three guidelines? I don't think so - they updated their former ones. They are offering a sane alternative to the IDSA guidelines which do not adequately treat Lyme.
People can be tested for co-infections. A positive test is a bingo - the person will get treated for it. But also not everyone tests positive for the co-infections, just like not everyone tests positive for Lyme. A Lyme-treating doctor may treat someone for co-infections who has a history of symptoms for them.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Robin thanks for answering my question.First of all let me clear up what I meant by 3 guidelines.What I meant was someone could choose from either the IDSA's,ILADS's,or DR B's guidelines.
I guess the bottom line is what are you going to tell a new member who comes on here and says I got bit by a tick a few days ago and now I have a bulls eye rash?What should I do?
If he asked me personally, I would tell him to follow the new ILADS's guidelines for an EM rash for the first 4-6 weeks of treatment.If you still have symptoms after that then you might want to find a LLMD to treat you from there.
Also, after the 4-6 weeks of treatment is over you might want to get a co infection test just to be sure.
But I am sure that others would say something different.So my question to them would be, if what you say is so important, then why didn't the ILADS put it in the guidelines?
Posts: 41 | From usa | Registered: Nov 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
If I was lucky enough to get bit by a tick AND get a bullseye rash (and I do mean LUCKY, Dr. H just recently said only 20% get the actual bullseye rash!)
so, if I was lucky enough to get the EM rash, AND, I knew what it was (before Lyme dx, I would have shrugged it off as a mosquito bite, yes, knew nothing 4 years ago)
I would take full dose Doxy 2x a day for 6 weeks, like the new guideline says. Then wait and see.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Although I just read on the east coast, babesia is showing up almost ALWAYS now with Lyme.
So I'd be really on the lookout for that-which requires totally different treatment.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Surprise, I would have to disagree with being lucky to get a bulls eye rash based on this recent study of 705 Bb seropositive patients in Italy.
EM was the most common manifestation and it has been detected in 437 patients (61.99%).
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I don't care if you disagree. Not trying to be rude, but I'm tired. I am managing my daughter's congenital Lyme disease, and have been under other stress.
This is an excerpt from a very recent interview with Dr. H, who has treated over 12,000 patients: (quote)
'People look for the bull's-eye rash, or erythema migrans (EM) rash, but half of the people don't get a rash at all, and sometimes the rash doesn't look like a bull's-eye. Maybe 15 percent of people get a bull's-eye rash.'
Or maybe I should have said, "when a new member who comes on here and says I got bit by a tick a few days ago and now I have an EM rash(which also includes,but not limited to a bulls eye rash.)?What should I do?"
Surpise says:"I would take full dose Doxy 2x a day for 6 weeks, like the new guideline says. Then wait and see."
So I guess we agree on that point.
But anyway this is starting to get to deep into the weeds now, so we should end it here.
[ 08-06-2014, 01:50 PM: Message edited by: rzh1 ]
Posts: 41 | From usa | Registered: Nov 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Actually, Dr. H is stating about 50% never get a rash, and of the 50% that do, it often does not look like a 'bullseye', and the 50% that do get 'some sort of rash' after a Lyme infected bite, maybe 15% of those 50%, the rashes actually resemble a bullseye.
That's how I'm reading it, from the top Lyme treating Dr. with 'in the trenches' experience with > 12,000 patients.
The CDC, NIH, estimate higher rash percentage, 70-80% occurring.
So- YES. I stand by you are indeed 'lucky' if right after infected, you see a bullseye rash, and know what it is to seek immediate treatment.
Let's not forget the nymph ticks that are a literal speck/ crumb size, the dot from a pencil mark size, missed missed and missed so unbelievably tiny- yet transferring life damaging infections.
Personally, I have never actually seen a tick in my life. Yes, love the outdoors here in my non- endemic area, but have never seen a tick- no rash- nada.
And so never treated and in the dark, passed Lyme disease while pregnant and/ or breastfeeding to one of my children at birth/ first 3 months of life.
Children are the first line suffering with this disease that is now an epidemic. Forget about you and me: innocent children, who may never recover to a full life. And it looks like autism, ADHD, PANDAS/ PANS.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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