An Open Letter to ILADS From a Former Member

I make it a point to expose myself as much as I can to the various perspectives on this illness. I am convinced that if I had failed to do that, my daughter would still be sick. Education is key to becoming well. Even if you currently disagree with a particular point of view today, you may have a different perspective a year from now.

I came across an interesting and eye-opening "open Letter to ILADS From a Former Member". He is a former ILADS member who is also an LLMD. Both he and his daughter have Lyme Disease. He has criticisms of both the IDSA and ILADS, although he mainly criticizes ILADS in this letter. He is very critical of the fact that ILADS promotes open ended antibiotic treatment, and that this approach damages some patients.

I know that some members on this forum will be unhappy with me because I have posted this letter. I would challenge you to be more open-minded to at least listening to an opposing perspective- and this from an LLMD! I really wish that I was aware of this perspective when we initially started treatment on my daughter. The author of this letter believes in antibiotics, but not in the way that they are sometimes indiscriminately abused in the Lyme community. I would just consider this information to be part of your Lyme data-base for future retrieval if needed. Enough said here.

http://www.x-rx.net/blog/2010/06/open-letter-to-ilads-from-a-former-member.html


Don

Thanks for the kind comments gentlemen.

ToddPaul- I can only share from my experience. When I realized that we were going down the wrong road, when she started to relapse, it immediately sent me into a panic. What were we going to do differently then we have already done to make our daughter well? We reexamined some presuppositions and then were able to see the situation more clearly. It is only confusing when you fail to clearly see the situation the way that it really is.

I am not trying to say that if everyone follows my formula, then success is guaranteed. I think that this doctor is correct in that this is a terrible remitting illness. But, is it logical to think that a long term "kill, kill, kill" mentality could ever achieve its stated objective with such an illness? I know about 2 dozen people in the local area that have Lyme disease. None of them have achieved the level of wellness that my daughter has. Some of them are losing the battle over the years, and the rest of them are seeking to maintain a status quo by occasionally taking "maintenance" ABX to avert a relapse. My opinion is that while they desperately "need" the ABX to temporarily feel better, they are also unwittingly sabotaging their own longterm prospects of regaining health. This doctor has stated the reality of the situation far better than I ever could.

I am not intending to pressure anybody on this forum to do anything. My goal is to suggest some different ways in which to think about this illness. I lay my thinking on the table here. I agree with virtually everything that this author has said. The only thing is, there are treatments available to make some people better beyond what he has stated. These things may not have been brought to his notice yet. He seems to almost have a fatalistic outlook that there is only so much that can be done. I agree with him to an extent, as not even the Hansa Center is able to heal everyone, These poor people have completely destroyed their bodies with many years of ABX. On the other hand, we need not be overly pessimistic as to the possibility of eventual health.

Don

Hi Don,

I think that the prupose of this forum is to inform, I personally think all information is welcome, even if it is contrary to one's own convictions.

I myself am in serious doubt about abx, although I'm still following my dr's guidelines up untill now. I haven't found any alternatives here in my country and also because I know that he is very intelligent and always is in search of alternatives.
I have been really ill for a very long time, started abx in August 2012 and never felt so ill in my whole life (and I know about feeling ill). I haven't had 1 reasonable day since starting treatment, I feel like I'm slowly dying.  I'm currently on a 12 week (in week 10) stop because of overall inflammation (but I started Buhner's Protocol on my own initiative). I think I'm supposed to start abx again soon.

I'm already convinced that I won't be taking abx for more than 12 to 18 months.

There is one thing though that caught my attention: the writer of this open letter mentionned XMRV. I have been in treatment for XMRV for the last 1,5 year, with Gc-MAF, prior to TBD treatment, and still am getting treated up to this day.

I'm sorry about my poor and somewhat unwell structured writing, you all know what causes it...

Thank you for the article.

Marie

Thank you so much for sharing this letter.

I do believe antibiotics are the best medicine has to offer us.. but unfortunately, they are far from a cure for many many sufferers. I consider myself very blessed to thus far have a disease that hasnt been very medicated. Since we didnt know what was going on with me and I refused to just take whatever the doctor du jour was prescribing. Ive only had abx 2 times for just short courses in over 15 years now and no steroids...and Im going to do a try to stay that way. I didnt know I had lyme then, but Im glad now that I was able to keep it uncomplicated now that I do know.

2 summers ago I could barely walk. Id broken 2 meta tarsals, then a pinkie toe, then the other pinkie toe.. then the two pinkie toes again in the course of 10 weeks. I was in an ulcerative colitis dxed flare (now we know that was lyme) I was sinking very very fast. It was after a round of abx. A few weeks ago, when I first got my lyme diagnosis.. I thought, maybe it was just because I stopped the abx too soon... and Ive been trying to weigh the benefits of long term use.

But through diet, I dug myself out of that and in the process (mostly.. still dealing with the damage from years of inflammation) I healed my Gut. I also started therapy, stopped letting myself be stressed at my job and moved 2 blocks from the ocean. Those were life giving.


Now after messing around with an herbal parasite protocol which I think activated my disease enough to show up on tests.. I have a lyme diagnosis and a doctor willing to treat me with IV antibiotics. For so many years I was lost in a system that thought I was crazy. So it felt so good to have a test come back saying that Im sick. It felt so good I just wanted to fall into whatever treatment.

Im thankful now that you have to wait so long between appointments.

Im pretty stable right now on a wide variety of supplements. Im going to try to help my body fight this if it can.

Im very lucky to have that option and I wish doctors would catch the disease earlier and give others that option too.

But Im also very thankful for antibiotics for those that need them.

Post Edited (PathogenKiller) : 3/26/2013 9:01:59 AM (GMT-6)

Its interesting to me that this author is not really against antibiotics. He is just saying that "there is a growing subset" of people that cannot tolerate them longterm. At that point it becomes a hindrance to becoming well for some people. He surmises that maybe the disease itself is changing and making people more sick, and thus more difficult to heal with antibiotics. That statement reminds me of what Dr. H on the "Under our Skin" documentary said.

Frankly, I am not against antibiotics either, but only when they become a problem in and of themselves. Once again, compatibility testing should be done but rarely is.

The Wryter- I probably only live about an hour from you here in Maryland. Lyme is truly of pandemic proportions here. Howard County has one of the highest incidences of Lyme in the nation. There are so many people that I suspect actually have the disease, but are misdiagnosed or undiagnosed. I agree with you that more people are being diagnosed these days. It will be interesting for me to see when/if the IDSA ever revises their perspective. Its beyond comprehension that these intelligent people could be so ignorant. Surely they are criminally negligent at this point.

Don

"He is a former ILADS member who is also an LLMD. Both he and his daughter have Lyme Disease."

I think he is a she, if you read about me link on the blog "after giving birth to my second child at age 41."

I think she hits on some good points, but goes way overboard, especially with this, "The ILADS treatment guidelines are a failure in my opinion." Without this medical group and guidelines, I can't imagine how many people would be dying or suffering from Lyme. The other side which is the IDSA, is doing nothing to combat the disease. Their way of treating is giving you steroids and autoimmune drugs, and slapping you with a autoimmune diagnosis that is pretty much a death sentence.

She says antibiotics are just Band-Aids. The truth is drugs such as cortisone shots and autoimmune drugs are the Band-Aids. Which is the core treatment method for 90% of the medical system today. At least ILADS is acknowledging the disease and trying to get to the core of the problem.

She claims "All these antibiotics you have been fighting so hard for are not the answer."

Oh yeah and what is? Her answer "is If you give absolutely no pharmaceutical treatment, just lots of good food, fresh air, reduced stress, supportive therapies, many get better." LOL If you ask me that's going on "faith," what she criticizes ILADS and LLMDs for.

"I have no problem with a few months trial of antibiotics for a patient who has been chronically ill and undiagnosed for years."

I can guarantee that a "few" months of antibiotics is not going to help anyone that has had Lyme six months or more.

"Incompletely, but I got better results with biofeedback and oxygen therapy than I am seeing in the antibiotic group now."

Oh yeah, who can afford that?

Anyone who has Lyme and is reading this article, please be advised we don't know this LLMD or her reputation. She might have a bug up her ass on ILADS doctors because they ignored her. What I've come to learn that many doctors have egoes through the roof!!! Narcissism big time!

I mean she expects ILADs to change their treatment guidelines just on her ideals and experiences? She claims she's gotten "a lot of many, many letters from people who have failed treatment or are failing treatment for TBDs." So ILADS should change their guidelines because she's gotten complaints on her blog and horrible results at her old practice.

I mean maybe she didn't treat aggressive/strong enough or changed up her abx program enough. Many LLMDs are just treating with orals, which in my opinion is a failure from the get-go. Anyone with Lyme after six months should be starting with IVs, then trickle of with orals and herbs. Then there's LLMDs many that don't treat with Flagyl. I left two doctors that were so-called LLMDs because they weren't up to date with protocols. So yes there is a lot of failure with antibiotics, but blame ILADS guidelines because some people don't get better on long-term antibiotics. The problem is much more complex than that.

"But judgement seems to have been lost in the treating physician group. That’s the biggest problem as I see it. Kill, kill, kill, something. It hasn’t worked. Will never work. Patients should save their money and go to the beach."

Majority of patients with chronic Lyme are disabled and not able to go to the beach, this comment alone just questions her train of thought. And I don't think that their guidelines consist of kill, kill, kill.

"Hurting some of your patients because you think you are helping the others is unacceptable." Hate to say it but that's life. There's gonna be many patients that don't get better, just as people with cancer that get chemo. Some say chemo is like dropping a bomb on the immune system.

Truth is no one knows how patients are going to respond to long-term antibiotic therapy, because they can't accurately measure the infection yet. So the safest bet is to treat till the symptoms are gone. I think guidelines aren't perfect, but they are the best we got. I think ILADS have taken into perspective the risk vs reward ratio. Everyone just has to accept the fact that some people don't get better and not point the finger.

She keeps saying that ILADS needs to provide data to back up their guidelines, well so does she if she plans on suggesting "lots of good food, fresh air, reduced stress, supportive therapies, many get better." And going to the beach is going to get people better. ILADS is not going to change their guidelines based on her train of thought.

Just my 10 cents on this article...

Post Edited (Muscle Car55) : 3/27/2013 7:35:57 AM (GMT-6)