I'm curious as to the experiences of those of you who had followed a treatment protocol in line with the ISDA's recommendations, and then later sought care through a Dr who departs from these conventions.
What made you seek the "alternative" path? Did you continue to have symptoms after the 6 month post-treatment period?
What convinced you that your experiences after primary treatment were indicative of infection, and not just continued autoimmune and/or inflammatory response?
Posts: 6 | From Montpelier, VT | Registered: Mar 2012
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posted
I did enough research that RIGHT after I was diagnosed, I made an appt with a LLMD and made a 2 day trip to see him. In the meantime, I did the low dose doxy that my dr. prescribed until my LLMD appt.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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posted
The very second I found out the ID doctor wouldnt see me because my results "must be a false positive"..
I also agree with Lymetoo-its not an alternative path its pretty much the ONLY Path to getting well..
I would advise anyone to RUN as quickly as they can from ANYONE who follows what those quacks have to say
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
When I tested positve and was gravely ill and no hospital or doctor would touch me.
Posts: 109 | From PA | Registered: Feb 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If you are a thinking person and you hear that a lot of people continue to have the very same symptoms after they have had the standard short course of treatment.....then you will figure out quickly which direction to go.
If you are not a thinking person, you will not survive this.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
When I found out I had Lyme, I researched the topic and learned right away that ILADS was the only way to go.
And I found out myself - I did book appts with an rheum and ID duck, and they were true to form -
they tried to undiagnose my already positive IGeneX Lyme test by sending out for an ELISA which came back negative, and then only prescribing abx for one month.
I had had unrecognized chronic Lyme for 25 years and was in need of treatment.
My opinion at this point - not to call them doctor anymore if they won't recognize these illnesses and our health needs. Maybe Mr or Ms or first name. They don't deserve to be called doctor. They are not doing doctoring - they are doing obfuscation.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I was sick for 2 months, went to 8 docs, and had hundereds of tests, from blood tests to 24-hour urine collections to chest x-rays to MRIs.
They all said "there is nothing wrong with you" but I had to quit work/school because I was so sick.
So I started researching for myself online. Watched the patient interviews on _Under Our Skin_ and said "That is me."
Posts: 330 | From TN | Registered: Sep 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In my case, after 10 years of going from doctor to doctor looking for a diagnosis, an endocrinologist is the one that said it sounded like I had lyme. He tested me through LabCorp and it came back positive.
He told me to see an infectious disease doctor. The ID doc was yelling at me as she came in the door! "Nobody could possibly have all of the symptoms you have marked down here! You have to have a BIG red rash to have lyme!" etc etc
She tried to un-diagnose me by sending me for another lyme blood test. I left her and never looked back.
I went to my primary care doctor (with my positive test result in hand) and he gave me 30 days of doxy and said, "I hope I can help you." What does that mean, I wondered.
I soon found out. The doxy took away the horrible feeling of being stabbed by thousands of pins. But, once I finished it, that sensation came back. It was unbearable, as were all of my symptoms (had been ill for 10 years by this time).
When I called the office to get a refill of doxy, the doc wouldn't do it, didn't want to see me, wouldn't talk to me. The assistant just said that he wanted me to see a neurologist.
I went to the one he recommended. He ordered tests which I dutifully got--spinal tap, brain scan, and the one where they glue electrodes to your scalp.
Neurologist then told me, "You don't have lyme in your brain! Do you hear me!!! You don't have lyme in your brain.!!!"
Meanwhile, I had looked at the brain scan report and it said I had 2 UBOs and that lyme could not be ruled out.
So, I said, "Doctor, how can you say that when the brain scan report says that lyme can't be ruled out?"
That was the end of that doctor. So, I was at a total loss. The medical community had abandoned me. Then, I heard that there were such things as lyme support groups and they would tell you what doctor to go to. Did that and the rest is history.
I got rid of my lyme and coinfections 7 years ago now. The lyme doctor got rid of my 10 years of undiagnosed lyme disease.
So, when you are rejected like I was, it isn't hard to just go to someone who will help you. No doctor ever told me to wait 6 months and my horrendous symptoms would just disappear.
The way I was suffering, waiting a week for anything was like being consigned to hell for a week. I could not have waited 6 months for anything. I needed relief and I would do anything to find it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
What made me seek an 'alternative' path? With a call from my cousin down in Maryland.
She said I must see an "LLMD", whatever the heck *that* was! I said my doc was familiar w/ the disease & currently Had me on antibiotics (100mg b.i.d. of "doxy"... whoopie.)
She said that wasn't enough. [I'll place the readers' comments here--> _____!]
She put me in touch with a retred college professor friend who was an ILADS member. (What luck) And he put me in touch with someone in my state, who just HAPPENED to be about to hang out his "Lyme shingle" in the little centrally-located town where I resided. The rest is, as they say, history.
To nanswer the question in your thread's 'topic', "Yesterday."
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Also, it's not just Lyme that doctors are misinformed about...
I had to diagnose myself for a prolactinoma and degenerative disc disease, because I was "not fat enough" to have the first and "not old enough" to have the second!
I finally got treatment for both when I found good doctors.
The way I see it, the doctors that barely bass get the degree just the same as the doctors at the top of their class.
Unfortunately, there aren't many "top of the class" docs out there.
Posts: 330 | From TN | Registered: Sep 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi LymeVT:
We never knew about the controversy. We were relying on the MD's and their diagnosis and treatments.
It was 4 months into treatment (6 months from the tick bite) when the Pediatric IDSA MD indicated my daughters symptoms were and he then twirled his finger around his right temple that I knew something was wrong.
Took us 2 more months of research before we saw a LLMD.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
It�s amazing there is a controversy to this insidious disease and I�ve found it easiest to show a couple of u tube video�s on the controversy.
He is a saint and I show this to help illustrate how MD�s have been prosecuted so normal MD�s shy away from doing anything but following the flawed IDSA guidelines.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I'm not sure what you mean by the six month period?
I was gravely ill. More ill than I've even been in my life. I could't get out of bed for more than a quick meal or a shower, and even then I had to sit down while showering. I was so lucky to have a positive W. Blot (from Qwest!) or else I don't know what would have happened. I did a lot of research early on and came to feel that the ILADS view made more sense. Friends put me in touch with two friends of friends who had Lyme and I thought it telling that both had gone to ILADS docs to get well.
I was actually CDC positive but my PCP thought it was a false positive and sent me to his friend, an IDSA doctor. I had already seen my LLMD once but I was still feeling things out and I wanted to be sure it was Lyme, so I went. The IDSA doctor actually agreed I have Lyme, so that was good, but he told me that I had been on the antibiotics long enough - 3 weeks - and that I should stop taking them. I was a little better but still so ill that I was bedbound most of the day. It just didn't make any sense to me, to stop treating when I was still so ill, so that did it for me. He also told me as a parting shot that probiotics don't work so just to go ahead and stop taking them. I can't believe this guy and so many like him are allowed to practice medicine.
Posts: 1737 | From Virginia | Registered: Aug 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I will add that yes, it is definitely scary at first to depart from the "standard" medical dogma. I had never been one for alternative medicine before this. No patient should have to make this choice and the state of things is really unconscionable.
But it is what it is and just by getting Lyme we are placed squarely in the middle of this controversy and sadly each new patient comes to it very sick and ill-equipped information-wise to make this decision. I know I was blissfully clueless about Lyme prior to last summer.
I know far less than many on here but I have come to think that in ten years or so, the ILADS view will be the standard view of Lyme. The IDSA view is already slowly being discredited.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
The IDSA view is already discredited. We now have a perfect Lyme test, through the Advanced Laboratories lab in PA. No one can say anymore that someone doesn't have Lyme, if that lab can culture the bacteria.
We also have plenty of studies showing persistence.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
What research can anyone point me to, which discredits the ISDA approach? By research, I mean peer reviewed, and published within a reputable journal.
I know the bias on this forum is in favor of ILADS, and I would consider myself a thinking person. I also am yet to be exposed to anything more than theory from the ILADS perspective, and would love to see some credible research supporting that perspective - largely because it seems sound.
Posts: 6 | From Montpelier, VT | Registered: Mar 2012
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posted
ISDA docs will cite credible research that demontstrates no benefit from applying antibiotics after that initial course of treatment....where is the research that says otherwise?
Posts: 6 | From Montpelier, VT | Registered: Mar 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
IDSA owns the journals, and most lyme docs are too busy practicing to try to publish. A few have, but some have tried everything to get published and can't.
If you don't think you have lyme, LymeyVT, I suggest you try not getting treated for several years and see what happens. When the medical establishment has it wrong, or at least is allowing a few crooks to continue to dominate lyme diagnosis and treatment, then patients have to protect themselves.
We really are not interested in convincing you. You are responsible for your own health and must make your own decisions.
Posts: 2888 | From USA | Registered: Mar 2004
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
WP, You wrote: "I was actually CDC positive but my PCP thought it was a false positive" and "He also told me... that probiotics 'don't work' so just to go ahead and stop taking them"
I hope you stopped Making appointments w/ Him! He's clearly 1 of the Biggest Quacks "aeev e'va HOID of".
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
LymeyVT, 1600 pages of information were submitted by ILADS to the IDSA in July 2009, including discussion of studies showing persistence. I think you could check with ILADS and Lyme Disease Association for some of that info.
Lyme Times issues: you can contact www.LymeDisease.org and they can point you to Lyme Times issues with published info about persistence.
They published about the July 2009 hearings too. I found Part I - it's the July 2009 summer issue, #56, with reports about persistence.
There's also a Part II issue.
Another Lyme Times I just found here - Vol 23, #1, 2011 - "The Lyme Debate - Part I" - pg 27, with heading, "Persistent Borrelia Burgdorferi," with 19 studies listed showing persistence.
It says a complete 2-page referenced hand-out of this info is available for download on the Lyme.Disease.org website: http//www.lymeidsease.org. Select Resources/Handouts.
"Treatment of Lyme disease: a medicolegal assessment" is a pamphlet written by LymeDisease.org's CEO and Dr S, past president of ILADS. It includes studies showing persistence.
Not sure if LymeDisease.org has copies. Pamphlet says author for correspondence: [email protected]Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
VT Lyme member said... "ISDA docs will cite credible research that demontstrates no benefit from applying antibiotics after that initial course of treatment....where is the research that says otherwise?"
Woah. Please take one step backward and first show me "credible" research that has come out of Camp A (IDSA) regarding Lyme disease. There is none.
The Attorney General confirmed what we already knew by seeing thousands upon thousands suffering, becoming disabled and dying after following the IDSA's recommendations.
The AG's lengthy investigation found the IDSA to be "biased" and riddled with conflicts of interest, amongst other things. Insurers, journals, patents, law suits- you name it, the IDSA was up to their ears in a septic tank of research and other garbage they tried to pass off as "credible".
The Attorney General said... in a most polite manner....
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."
If that isn't enough....
The tests and other products the IDSA recommends benefit them and/or their buds ($$). And the tests totally suck. Even Hopkins published that those tests miss up to 75% of the people with Lyme.
Funny how the IDSA guideline editor was also on the Hopkins study that proved the tests were bad. I guess he just forgot to mention it and allowed the guidelines to be published recommending those tests anyway.
The research the IDSA and their buds put out is based on those faulty tests. So how credible is that? That is like building a car with a burned-out engine. It ain't gonna work.
The "cash cow" vaccine they were involved with was based on research that was based on the results of the faulty tests and they failed big time. That's not adding to their credibility at all.
The IDSA guidelines are based on research that is based on the failed vaccine trial research and other studies that are based on the faulty tests.
And the music goes round and round whoah oh oh oh, oh oh, and it comes out here.
Bottom line...
If you bake a peach pie using rotten peaches, it won't take long for everyone to figure it out, and then no one is going to buy it no matter how good (credible) the bakers of the pie claim it to be.
PS- As for credible research... you might direct your question to Phil Baker, formerly of the NIH Lyme grants program and now the head of the American Lyme Disease Foundation.
Ask him why the funding for Lyme research went to the corrupt buds of his- who then put him as head of their organization when he left the NIH.
And why his financially supported/approved research grants were for studies based on the tests he knew were highly questionable and highly contested and plain old bad.
While you have his attention, ask him to show you anything Lyme-related that he has ever written, since joining the IDSA at their sister organization the ALDF, that is not bashing sick Lyme patients, the labs they use, and the docs who treat them...
And why he scrambles around behind the scenes trying to censor information that goes against his theories, and his buds pocket books?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
VT Lyme patient said... "I also am yet to be exposed to anything more than theory from the ILADS perspective."
If you are at all serious about getting "exposed" to good ILADS information, why not email ILADS and ask them rather than come here to a chat room to ask sick patients about scientific theories?
posted
Thank you Ms Tincup - I was hoping you'd show up here sooner than later!
Posts: 13116 | From San Francisco | Registered: May 2006
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I made the switch after doing a lot of research. There are plenty of scientific studies referenced in Cure Unknown that support the "alternative" path.
I was not even able to see an ID doctor. A family doctor sent a referral which was denied. While trying to convince the ID doctor to see me over the phone, the ID doctor told him to prescribe antidepressants for pain and send me on my way. This was without ever seeing my file or meeting with me. Plus, I had a clear history of tick bites, rashes and flu-like illness.
I then went to a rheumatologist who was even worse. I waited over a month for a worthless appointment that lasted less than 2 minutes.
That was when I started to realize I needed to find a doctor who would actually listen and implement a protocol that had patient health and well-being in mind. This doesn't necessarily mean long-term antibiotics. It could mean herbs or other alternatives along with lifestyle changes.
There is plenty of research out there. I am not someone who usually attempts any alternative treatments, but I feel like going the ILADS route is not an alternative, it's the only choice. I also like to look at scientific data when making decisions.
In my opinion, waiting around doing nothing while an infection is raging does not seem productive to me. Logically, it does not make sense to me that if treatment for an infection was effective that a patient's symptoms would continue to progress and increase indefinitely. I waited for 6 months (not by choice) after my initial ineffective treatment. I continually became worse.
LymeyVT, I noticed that you are searching for a LLMD, so you must have some suspicion that you have Lyme. I understand the uncertainty that comes along with Lyme particularly in the beginning. That's why it's important to read and research as much as you can.
I do not believe that Lyme is the cause of absolutely everyone's problems. It may be possible that you have some other type of condition. You need to figure out your own comfort level with whatever diagnosis you are given depending on the source.
For example, if after multiple tick bites and a severe off-season flu-like illness I developed severe arthritis along with MANY other symptoms that I never had previously, I personally, would not accept a diagnosis of a sudden case of rheumatoid arthritis or fibromyalgia.
Unlike Lyme, there are plenty of conditions that are commonly diagnosed that do not have much support in the form of scientific data. Likewise, there are many conditions that are clinically diagnosed and lack any lab evidence to support them. CFS and fibromyalgia for example.
Does this mean that these conditions don't exist? It depends on who you ask. What I ask myself is why doctors are so quick to diagnose certain conditions that have limited evidence to support them but are so hesitant to help patients with Lyme, even when it is documented by tests.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Sounds like a duck.
When my pcp blew off my symptoms after my WB was negative (had 2 WB). Still had symptoms that didn't exactly match, but were bad, so I knew she was wrong, and pushed forward.
It helps to have a brain that doesn't only accept conventional medicine--those docs haven't been trained to think outside the box (only what they've been told/taught).
-------------------- --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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well put, Summer. And the rest of you! It is interesting to read the responses. Sad, but interesting.
Robin593y75892, you continue to make me laugh! HA!
Thanks for that! And to note, I think you and the others were holding your own with the explanations provided. Really I do!
I just got hung up on the "credible" word used to describe the IDSA, right from the get-go.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
After seeing over 100 doctors (MD's & ND's), I finally got correctly diagnosed by a very intelligent Naturopathic physician.
I'd been sick for over 30 years and had been given a number of diagnoses that never quite made sense to me. Lyme was the first diagnosis that I actually felt deep inside that it was true for me.
Once diagnosed, I started researching. I bought books online (Buhner's "Healing Lyme," Peter Alex's "The Homeopathic Treatment of Lyme Disease," Pamela Weintraub's "Cure Unknown," and saw the film, "Under Our Skin").
My non-LLMD's told me repeatedly I couldn't possibly have Lyme despite a positive IGeneX test.
When I herxed so severely from Buhner's protocol, I lost the ability to swallow anything and became severely dehydrated, I was admitted to the hospital. I could not believe the antipathy there towards chronic infections of any kind.
The hospital ID specialist tested me for Lyme through Mayo Clinic's lab. The result came back CDC positive for Lyme, yet the ID doctor refused to report my result. He told me it had to be a false positive, that the bands were "cross-reactive" with something else.
He was unable to come up with an answer when I asked with what were the bands cross reacting.
I knew by this point that he was uneducated enough to be ignorant of how smart the Lyme spirochete really is, and persued other opinions from local LLMD's.
All LLMD's (2) and LLND's (3) I've seen have agreed I have chronic Lyme and likely also Bartonella (clincially; tests are negative for all coinfectoins). It is uncertain if I have any other coinfections, but Anaplasma is also a likely possibility.
After 2 years of IV treatment with abx, I felt little improved. So I've moved on to orals and am seeing some good improvements.
To me, if treatment helps (whether drugs, herbs, or anything else that fights infection), that helps to confirm the diagnosis.
I've never gone back to the ID specialist who told me my CDC positive Lyme test was false positive.
I also got yelled at by my Allergist (non-LLMD) for mentioning the possibility of Lyme disease. He's a really smart doctor, but not about Lyme.
So I never really did start off with the IDSA view, because I always research things when I am told that I have a particular diagnosis.
I was raised to question things until satisfied with the explanations given. I apply this equally to everything I've learned, including Lyme.
Keep researching - you'll come to your own conclusions about this disease and be more satisfied with those conclusions than if you just lock, stock & barrel believe what others' opinions are.
Here are the books I've read on the topic of Lyme Disease:
"Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections," by Stephen H. Buhner
"Cure Unknown: Inside the Lyme Epidemic," by Pamela Weintraub
"The Lyme Disease Solution," by Dr S
"The Homeopathic Treatment of Lyme Disease," by Peter Alex
"The Top 10 Lyme Disease Treatments," by Bryan Rosner
"Insights Into Lyme Disease Treatment: 13 Lyme Literate Health Care Practitioners Share Their Healing Strategies," by Connie Strasheim
"Ending Denial: The Lyme Disease Epidemic - A Canadian Public Health Disaster," edited by Helke Ferrie
"Everything You Need To Know About Lyme Disease and Other Tick-Borne Disorders," 2nd Edition, by Karen Vanderhoof-Forschner
"Beating Lyme Disease," 2nd Edition, by Dr J of Kansas
I just read through these stories again, and am struck by the number of you who reported having positive tests, including CDC positive ones, and still not being believed. Wow.
I had a positive IGeneX test, but not enough for CDC positive, so I was wishing I had shown five bands for reporting purposes. And now I read what happened to those of you who did have enough CDC positive bands - you still got pushed away.
Posts: 13116 | From San Francisco | Registered: May 2006
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Sorry, Lymetoo... I thought it was ok to post names if the doctors had published books...didn't realize that was now a no-no also.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Thank you all for your help - please know that I am not critical of the ILADS perspective, and I understand the financial undercurrents that have deeply impacted the conversation at play within the medical and legislative communities.
I've read much of the literature available, including that which is referenced in this thread - and I find the perspectives and theory produced by non-ISDA doctors convincing.
What I was more interested in, as a thinking person, is evidence supporting the ILADS perspective beyond theory and anecdotal/case data. I respect the value of theory and case data greatly; I also know that in scientific terms, evidence based practice requires much stricter guidelines - peer reviewed, double blind, etc., etc.
Obviously, there are hindrances to the production of this evidence - hindrances that have little to do with the actual science of the issue.
I am an informed consumer of research, with a MA in Clinical Psychology, and an (almost completed) doctoral degree in education. I am a "thinking person" to the point where I know well enough to play devils advocate, and to look deeper, even when I sense that the minority opinion is in the right. Posts: 6 | From Montpelier, VT | Registered: Mar 2012
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posted
I think that you can get the data you're interested in by contacting ILADS - www.ilads.orgPosts: 13116 | From San Francisco | Registered: May 2006
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