Topic: ILADS LLMDs - Have many seen remissions in their care?
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I do realize that when people go into long-term remission, many leave this board and return to their lives.
I am wondering how many people may have seen long-term remission through the care of ILADS LLMDs.
I realize that the ILADS Drs usually incorporate complementary & alternative medicine into their treatment plans and seem to utilize higher doses and longer courses of ABX, compared to most non-ILADS Lyme Txing physicians.
I also realize that there seem to be risks involved with ANY treatment that may actually result in remission.
I would appreciate both pros AND cons of your ILADS treatment and PLEASE be kind to each other (as I'm sure you all will. )
Thanks in advance. Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My LLMD who follows ILADs treatment protocol
Boasts of a 90% remission rate.
Hoping to be in those numbers sometime soon.
(Even if it is only for a while)
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
My current LLMD says about 80% of his patients go into remission and my impression was that he meant permanently in remission.
However, I should note that he has really only been routinely treating 'chronic lymies' for about 6 years so his statistics may not be 100% accurate do to the lack of years of treating people.
His strategy for treating is primarily traditional antibiotic treatment and then when someone gets to remission, he highly recommends that people follow a tweaked version of Dr. Zhangs protocol for 6 months.
Posts: 561 | From mass | Registered: Jul 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I haven't asked my LLMD his "cure rate". I know he himself has been in remission for 15 years .... though he says he "had Lyme".
I am real close to remission myself.
He is very aggressive with abx. I think this is a "pro" because he hits the bacteria hard before it has a chance to change and hide.
He is also well-versed in herbs/supps. I also think this is a "pro" because he uses them to kill bugs in conjunction with abx, as a tool to wean a patient off abx, and to rebuild the immune system so it can keep the person in remission.
My LLMD is also aware of the need for detox protocols. He sees the big picture as far as all the stuff that goes along with Lyme -- coinfections, heavy metals, thyroid, adrenals, etc.
The "cons" .... the only con I see is the persecution they get and we get for going to them.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Greatcod
Unregistered
posted
It's a very good question..I tried to arrive at an answer for myself, and my sense is that they achieve 80% remission or substantial improvment. The IDSA claims that additional ABX demonstrate no improvment in patients. Lymeworld is strange.
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lymeladyinNY
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Member # 10235
posted
I've had two LLMDs - both very good. The first I left for geographical/convenience reasons. He told me he was sorry to see me leave - but that he really didn't know what to do with me next.
Now, three years later, my second LLMD admits she is frustrated by my case. She told me she can't seem to get me well no matter what she tries.
So, I think the LLMDs are doing it right, but some of us (like me!) are just not able to heal well for probably a myriad of reasons - genetics, germ load, germ type, etc., etc.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Well, I consider myself an ILADS treatment success.
There is some collateral damage. Numerous lesions on MRI scans remain unchanged in spite of treatment. I have pretty scary neuropsych testing.
However, I went several years without treatment. I also had babesia WA-1 (unknown at the beginning) adding to my tick-affliction.
After a couple years of pretty intensive treatment -- mainly orals -- I consider myself at about 80%.
I'm not a bit unhappy about the apparent permanence of certain things. I don't actually believe further antibiotics will do anything for that. The main source of my happiness is that I no longer wake up every day with a shrieking migraine. I did not previously believe this was possible. I no longer fall asleep in odd places or sitting upright.
I took Theralac throughout treatment, artemisinin along with standard anti-babesial treatment, COQ10 & Gingko Biloba to help brain function.
I may not ever be multi-tasking again but I don't consider that a sign of treatment failure. It simply painted me a road map to find something more artistically challenging, as opposed to mentally challenging.
I hope everyone hangs in there. Things really do get better, even if they've been bad so long you can't remember what 'better' was!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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So far I have talked to 3 people in the waiting room of his office and 1 said she originally came there with lyme and is better but doesn't want to go to another doctor so she sees him for check ups and everything else.
Another said she had lyme for 20-30 years and couldn't function, she went into full remission for 8 months so far I think.
The other said she wasn't able to get out of bed when she first came to him and she is almost better. She is back to a normal life with minimal symptoms and still treating for now.
I hope to be posting soon about my remission, don't we all Posts: 413 | From nj | Registered: Nov 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I have only seen full remissions with ILADS doctors- and our one lone wolf doc who doesn't think of himself as an ILADS doc but treats exactly the way they do...
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Cave,
Do you do anything for detox?
I posted a thread on how to promote liver health and it sunk like a rocket ship. Not one response.
Everyone of us who are sick, especially everyone on abx, has an overburdened liver. This is true even if the blood test show a normal liver.
Yet no one is interested in simple daily measures we can take to support our liver?
Why?
Diet and detox have been the most important aspect of my recovery by far. The only thing diet and detox did not do for me was eradicate H. Pylori. 30 days of ammoxy, biaxin and prevacid knocked that out and I have been inflammation and symptom free since July 07.
Even though I test positive for Babs WA-1, I have no symptoms. I believe I contracted the Babs with the tickbite in May 07 and immediately following this tickbite I experienced fatigue, palpitations and incredible weakness. But 30 days into the H.P. treatment and all those symptoms disappeared.
Dr had me on the amm, biaxin, prevacid until Jan 08 when I developed tonsilitis so she switched me to zithromax and added Nizoral for the yeast infection I developed in spite of multiple probiotic pills.
I am juicing fresh veggie juices and eating some raw veggies and fruit daily.
I'm doing really well. In fact, I feel 100% well. Even my left wrist, damaged by RA, is getting stronger and more functional. If that baby heals, it will be nothing short of a miracle. I already have an MRI and a surgeon's report that all the cartilage is gone and fusion surgery is probable.
Yet, since beginning the juices, the wrist is stronger.
Two doctors have said that once your immune system is primed to respond to triggers in a certain way (for me that way is RA)then for the rest of your life, whenever you are exposed to the trigger, your immune system will respond in the same manner. This would certainly explain remissions and excerbations or RA. Also, relapses of lyme.
So, how can we prevent this relapse? My LLMD says the immune system can be healed so it does not hyper respond. I pray she is right.
Seems to me, the best way we can avoid a relapse is to keep our systems as clear of toxins (all kinds) as possible so we do not overload the immune system. I will do this the rest of my life in hopes that I am never again struck down by RA.
I can't imagine why people would be so disinterested in something so simple and so vital. What's it gonna hurt to eat your veggies daily? And juicing is the simpliest way to be sure you get your daily dose.
Why would you consume endless amounts of toxic medications and not be sure you are eating foods that will optimize life in your body?
Cave, I started this post to you, but am talking to everyone about the eating. I don't know what you eat and am not accusing you of not eating your veggies.
Everyone here on medications both prescription and herbal needs to worry about the health of their liver. In fact, I think liver stress that runs below the radar causes us to get chronically ill. By the time bloodtests detect a problem, the liver is very, very sick.
Cave, I hope you are back up and running again real soon. If you haven't been a healthy eater before, why not give it a try and see how you do. Eat only veggies for 2 weeks and see how you feel.
I'm not advocating vegetarianism. Veggies only for 2 weeks is just a great way to clean out your system and give it a break. Cheese, meat and processed junk food is very hard on your system. Just try two weeks and see if you improve. You won't have to stay on "just veggies" forever, but it will tell you if diet is a issue.
Anyone who is not making a strong effort to eat well is definitely NOT eating well. I say this because almost every food available to us is processed junk. You have to work at finding whole foods and usually have to buy and prepare them yourself.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I would like to see way more success stories out there...this is a helluva a lot to got thru for no certain outcome. But then what is the alternative. LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
You do have to figure that quite often success stories leave the board.
I believe that LouB's daughter is an ILADS success story & there should also be some others posted up top.
I personally would like to see us ALL posting success stories! Hopefully that day will come soon!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hi Ali and folks,
I had a nice post all typed out and when I went to enter it to the thread I got a shutdown. This site needs a new server or something.
It's been slow as heck the last month or so.
Anyway, as I tried to post yesterday, I consider myself a ILADS success story. I believe
I have reached a level of remission considering where I was and am now.
I may not have had the benefit of really aggressive treatments however I tried to follow Dr B's guidelines to the letter no matter who was treating me.
I have had two llmd's and I have to tell you theat even they can be somewhat difficult when trying to set up ones own regimen.
I was always wanting a more aggressive treatment so I would'nt keep sliding backwards whenever I would go off meds.
I do believe however that in spite of not getting the overly aggressive treatments I have
attained a level of remission that for the time being I am satisfied will not slide all the way
back to however bad I once was. That would be a vegatable laying on the couch in pain and confusion and hopelessness.
So there is hope out here with the ILADS plan of action against this disease.
The problem with the studies of utilization of antibiotics in an aggressive or open ended regimen is that there have been NONE.
Even Dr Fallon(bless his heart)neglected to use a second abx while infusing ceftriaxone and
did'nt follow up the ten weeks of IV therapy with two types of oral abx.
I believe if he had done both the results of his cognitive study would have been dramatically different.
So folks you can hang in there and know that the abx's that ILADS recommends work to get you out of the painridden, nutty life your're now living.
I will probably never be cured completely, although I keep trying.
This is due to extenuating circumstances which I was exposed to in my particular journey with these diseases.
Hang in there folks, you will get better with ILADS recommendations. I guarantee it. Of course
if you don't.....then perhaps as the guidlines suggest, you may have something else....
and your doctors should look into that to see what it is you really do have.....
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I am a success story and have been for years. My doc that saved me is ILADS, Doc S of SF. There are multiple people in full remission from our local group and multiple people who are asymptomatic as long as they stay on maintenance abx and NONE of them did detox stuff or alt doctors, all ILADS.
All full remissions of total chronics I know in person involved IV Rocephin, IM Bicllin or Bactrim and treatment for all major TBDs regardless of serology.
The down side- people who don't tolerate abx well- we have one lovely woman still sick after years because she has never been able to stay on meds because of gut issues. She is the only one who I think would have been well if able to be. Others have made choices that keep them from optimal wellness, she would have been well by now, she makes good choices.
I see people in my group stay sick for years and mess around with one hting after another- the people I see get the best or full remission are 100% ILADS treatment philosophy.
I have seen MS Lymies lose wheelchairs, seen ALS Lymies LIVE, seen people in pain for years have no pain- I have seen people have children htay never thought they would have- one woman in full remission went on to have 3 little boys in a row! Or go back to work full time after being out of work! Or find love again and travel the world (a couple of people have done that, bless them, I envy the travel part!!!).
It is lovely to watch-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Now maybe I stand alone in this. But not for one minute do I consider lifetime abx to be a sign of wellness. Perhaps if some took better care of their bodies, the maintenance abx would not be necessary.
That is not to say that if I had a life threatening disease like ALS, I would not be very happy to take maintenance drugs to keep me alive.
Otherwise, I like the healing stories where the person doesn't have to have any medication in order to be in remission.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I want to thank everyone who has been kind enough to share their personal experiences with ILADS physicians with me thus far.
I tuly appreciate each & every one of you.
Luvs ,
I'm sorry but I do have to ask, is it necessary to lecture the people who have been kind enough to try to answer my questions in this thread?
I realize that you feel strongly about the importance of maintaining the healthiest possible body in order to fight these diseases & this is great information you are providing, but why here?
I have been trying to help you get the info out in your threads because I tend to agree that it's beneficial to getting & staying well, but it really has nothing to do with what I've asked.
Did you actually have an answer for me as to whether you've seen any pros & cons in your treatment by an ILADS physician because if you did, I think I missed it somewhere.
Maybe I'm just confused?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Count me in as a remission.
First time sick (2001), I pretty much went with conventional care, because it was covered under my insurance. Two months of oral doxycycline, one month of Ceftin. It took months after treatment to get back to feeling well, exactly what IDSA says will happen, though they forgot to explain that "months" meant almost a year.
First relapse (2004), I went with an ILADS doc immediately, one who does not do any alternative treatments, and very little complementary stuff (probiotics was about it). I told him specifically that I just wanted to kick the bugs into remission, and eventually 6 weeks of Mepron/Zithromax did just that.
I still have some "issues" (peripheral nerve stuff, a little arthritis, hearing loss), and I recently weathered an attempt at another relapse, but I am well enough to maintain 3 jobs (2 of them are physical), single parent a son through his neuro-psych Lyme, and get through grad school on my "spare" time with a 3.9+ average.
Your mileage may differ, and I do not recommend that people do what I did. It is simply my story.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Luvs said: luvs2ride Member # 8090 posted 06 February, 2008 01:02 PM -------------------------------------------------------------------------------- Now maybe I stand alone in this. But not for one minute do I consider lifetime abx to be a sign of wellness. Perhaps if some took better care of their bodies, the maintenance abx would not be necessary.
That is not to say that if I had a life threatening disease like ALS, I would not be very happy to take maintenance drugs to keep me alive.
Otherwise, I like the healing stories where the person doesn't have to have any medication in order to be in remission.
Luvs
Luvs, I do have very bad neurological Lyme disease, with ALS/MS/Parkie symptoms when active.
You seem to be very negative toward my life experience because quite frequently when I share my experience, strength and hope I find you posting afterward in a way that denigrates it.
Maintenance abx are a dream, a wonder, a lovely thing, miracles, for people who HAD been diagnosed ALS, MS, who HAD been in wheelchairs, or like me, who had been in dementia and could no longer remember my own childs name. So for those people, maintenance antibiotics can be wonderful.
Antibiotics are the only thing I have ever seen put longtime chronic Lyme people into FULL remission, not just like some who stay on maintenance abx, but FULL REMISSION, off of ALL antibiotics, off of everything.
I am so tired of being insulted every time I come to this board.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Perhaps if some took better care of their bodies, the maintenance abx would not be necessary. UNQUOTE
I nor anyone deserve to be blamed for illness.
I take excellent care of my body. I do not drink, smoke or do drugs. Pre-Lyme I had not even taken an aspirin for ten years. I was running 5 miles a day when I got sick and was in prime athletic condition.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks everyone for your input.
I want to post replies but am struggling with brain fog right now.
Sarah, I'm so sorry you were hurt by Luvs posts.
I have been trying to keep separate threads in the hope that ONLY those with actual experience with the Tx modalities would post in them.
I specifically did this because I didn't want people hurting each other, but wanted to get valuable insight into different approaches from those who've had experience with them.
I appreciate your support and it is nice to know that, even if you have taken very good care of your body, you might still end up fighting these buggers.
I'm sure there are a lot of people who might feel they should blame themselves for their inability to fight these critters because they haven't taken impeccable care of their bodies.
It should make them feel a bit better knowing that it may not be their fault.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
My LLMD is ILADS and we did 23 months of abx and 7 months of Mepron. I was very sick for over 5 years before starting treatment. I had been dx with Fibro and degenerative disc disease and been told I most likely had MS. As well as possible Lupus or RA.
I've been off all symptom medications for over a year and off abx since November.
He has had good luck with Cowden as a way for patients to transition off abx and so I am doing that. It is a 6 month protocol and I have 2 more months.
He wants me to do another CD57 to check in.
I did follow the Lyme diet (I had before treatment as an anti-inflammatory diet), I did some detox (lemon water, sauna, tea) but nothing really alternative.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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