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Newbie/Oldbie w/suggestion about finding doc

Posted: Wed 26 Mar 2014 21:31
by intrepid
Hi all,

First, let me say that I feel quite lucky to have stumbled across this forum after suffering with Lyme/Bartonella for 10 months now. So far, most of my reading has been medical texts and research, and it's been a struggle to weed out the b/s from the good stuff. Unfortunately, there's really not that much good stuff and a lot of b/s.

Most of the forums follow a similar pattern. A lot like chickens running around with their heads cut off. It's very chaotic. Very hard to discern a reliable pattern of viable treatment methods.

Then, I came across LymeNetEurope.org this morning, early, early this morning. My illness often causes me to wake at 4:00 am. What I found was TRUTH. Finally, refreshing, honest, frank, candid, TRUTH. It blew me away! Why couldn't I have found this 10 months ago?!!!

I am still reading through the posts, a long way to go. So many intelligent people. So much good information.

Here's a couple of HUMBLE suggestions…maybe I missed something in my reading, maybe not, but I'm just going to throw these out there and maybe you can help me understand the situation better (since I'm new to the forum):

1. I'm desperately trying to find an excellent doctor to save my life. If I don't find one fast, I'm dead meat in a short time. I'm talking weeks/months from now. I'm serious. My condition is degrading rapidly. I've approached other organizations before to find one, and have been burned badly with their recommendations.

I was hoping that a forum like this one, that excels in purveying TRUTH, would have a section listing, praising, recognizing the best/better practitioners in this field. Why can't I find this information? Am I not looking in the right place?

Here's a fundamental truth for all of you: One of the most important things to us all is finding the right doctor. Most of us need lots of help to achieve this. It can mean the difference between life and death. Sickness and recovery. Suffering and health. So, why isn't there a dedicated section for this on the forum site? It begs the question...

Here's the suggestion: What you need is a dedicated forum section entitled, "Recommended Tickborne Illness Physicians," and allow members to give recommendations with experiences, contact info, office rates, fees, typical protocols, etc. I think that something like this will save lives. It will mine.

2. There is virtually nothing on the forum about Fluoroquinolone toxicity. Cipro and Levaquin are the most likely culprits in our community. I plan to change this by posting shortly. Levaquin has left me crippled, and destroyed a long list of systemic and organ functions in my body. Some functionality will partially recover in 3-8 years, some effects are permanent. (Can you imagine never being able to never fully walk properly again because your doctor chose the wrong medicine?) This is the result of my LLMD mismanaging medication. I only became aware of the dangers of fluoroquinolone toxicity after the fact, but it only took me several days to become educated into the subject. Why aren't LLMD's doing this reading for me? So, for now, 70% of Bartonella/Lyme sufferers who go on fluoroquinolones long term end up "floxed." And, for now, I'm bed-ridden, in a wheelchair, my liver destroyed, CNS destroyed, major peripheral neuropathy, heart damage, eye damage, my legs are gone/worthless, incredible pain, paresthesia, impaired cellular metabolism (anabolism), interstitial nephritis, constant tinnitus, impaired glucose metabolism, impossible to get good sleep, migraine x 2 level headaches, anxiety (GABA block), anticholinergic effects, and much, much more. I have documents and research reports to support all this. This is not hypochondria, this is real, and it's being ignored by everyone, including and mostly by "doctors."

My suggestion: You don't need to create a new section for this (obviously), but, I think it would be a good idea for some of your more talented, able people to learn about this and post. In the meantime, spread the word that fluoroquinolones should be used as a LAST RESORT, and never as a frontline or first resort antibiotic. It will dump your life down the sh*tter, I promise you. This comes from personal experience. If anyone has any questions on this, I will gladly answer.

Please, everyone, I make these suggestions in earnest, and the greatest humility. Please don't misinterpret my words as arrogance, as I am far from being an arrogant individual. I honestly try to live my life with compassion and lots of humility. Seems necessary nowadays.

All my best to everyone,

intrepid

Re: Newbie/Oldbie w/suggestion about finding doc

Posted: Wed 26 Mar 2014 23:45
by RitaA
Hi intrepid, and welcome to LymeNet Europe!

I think most of us can personally relate to the difficulty of distinguishing between BS and the good stuff -- and especially early on in our efforts to learn about Lyme disease and co-infections.

Discovering LymeNet Europe was also a life-changing moment for me. That said, I found it more than a bit overwhelming at first because I simply couldn't process all of the valuable information due to some cognitive difficulties. What I did (and still do) appreciate immensely was/is the variety of contributions and opinions offered here. This forum has an international feel to it, and I enjoy that aspect as well because I think we can all learn from one another regardless of where we live.

As far as your suggestion for a section containing recommended tick-borne illness physicians, I'm expecting the site administrator to comment on that in due course.

You're right about there being very little (if anything) about fluoroquinolone toxicity being posted on this forum. Perhaps when you're feeling up to it, that's something you could tackle yourself -- and especially given your own very valuable personal experiences. In the meantime, I did a tiny bit of research on behalf of a fellow Canadian and posted the results on the Canadian Lyme Disease Foundation's website for anyone who is even mildly curious:

http://canlymec.ipower.com/forum/viewto ... 3db00f6740

I’m guessing that folks here either haven’t been “floxed” as part of their treatment or they mistook one or more side effects for worsening Lyme disease and/or co-infections. There are times when it is virtually impossible to distinguish between a disease and the side effects from treatment for that illness – and this isn’t unique to tick-borne diseases by any means.

Here’s wishing you all the best in finding the right doctor to help you regain your health as much as possible, and as quickly as possible.

RitaA

Re: Newbie/Oldbie w/suggestion about finding doc

Posted: Thu 27 Mar 2014 15:57
by intrepid
To all LNE members who are mildly intrigued about the subject of "Floxing:"

YOU SHOULD BE. IT'S A REAL AND PRESENT DANGER.

See my post in the "Special Forum - General Health" section, entitled: "A WARNING ON FLUOROQUINOLONES - READ"

Even better, here's a link: :-)

http://www.lymeneteurope.org/forum/view ... =13&t=5301

All my best,

intrepid

Re: Newbie/Oldbie w/suggestion about finding doc

Posted: Fri 28 Mar 2014 18:44
by Camp Other
intrepid wrote:Hi all,
Hi and welcome to LNE.
intrepid wrote: First, let me say that I feel quite lucky to have stumbled across this forum after suffering with Lyme/Bartonella for 10 months now. So far, most of my reading has been medical texts and research, and it's been a struggle to weed out the b/s from the good stuff. Unfortunately, there's really not that much good stuff and a lot of b/s.
I'm sorry that you've contracted tickborne infections and have been suffering not only from the symptoms of disease but also suffering from the experience of sorting out what's true, what's false, and what's speculation online about tickborne infections. It sucks, and I have had a similar experience.
intrepid wrote: Most of the forums follow a similar pattern. A lot like chickens running around with their heads cut off. It's very chaotic. Very hard to discern a reliable pattern of viable treatment methods.
Nods. Things are the way they are for numerous reasons. One is that those who show up on forums are a heterogenous group, and can have different diagnoses or coinfections which affect treatment outcome. The other is that outside of the IDSA guidelines for treatment, while ILADS has come up with their own set of guidelines, each individual practitioner who treats patients has come up with their own approach for managing each patient's condition(s). There is no validated "one way" to deal with treating tickborne diseases in general - even those who follow the IDSA guidelines are aware there are exceptions and will offer additional antibiotic treatment for specific cases.

For anyone who has long term persisting symptoms past initial IDSA-style treatment, there is no specific clinical trial which demonstrates which treatment works best for all patients. A subset of patients showed improvement with additional treatment in trials. Based on this, some doctors decide to treat patients with longer term courses of antibiotics. But there truly isn't enough research on treatment approaches including combination antibiotic use for persisting symptoms and also non-antibiotic treatments such as immune modulating drugs.
intrepid wrote: Then, I came across LymeNetEurope.org this morning, early, early this morning. My illness often causes me to wake at 4:00 am. What I found was TRUTH. Finally, refreshing, honest, frank, candid, TRUTH. It blew me away! Why couldn't I have found this 10 months ago?!!!
Well, yes and no. Yes, there is TRUTH here because people openly discuss research that has been done, whether or not politics influences what kind of research is done, the role of the media in educating the public about tickborne diseases, and all these other topics which need to be brought to light. At the same time, there is a history of discussion on this forum which is speculation and opinion, sometimes strongly held opinion and people can have heated arguments about what chronic Lyme disease is or isn't and whether or not more antibiotics are a good idea. (If you read past discussion threads in the archives, you will see just how contentious discussion can get. Lately the forum has been quieter in this regard.)

The good thing is people discuss everything related to Lyme disease and other tickborne diseases. Many of us on this forum are seeking the truth and also wanting to pin down the uncertainties around tickborne disease. Even if the atmosphere gets thick with argument at times, many of us seem willing to stick with it so we're still here.
intrepid wrote: I am still reading through the posts, a long way to go. So many intelligent people. So much good information.
Nods.
intrepid wrote: Here's a couple of HUMBLE suggestions…maybe I missed something in my reading, maybe not, but I'm just going to throw these out there and maybe you can help me understand the situation better (since I'm new to the forum):

1. I'm desperately trying to find an excellent doctor to save my life. If I don't find one fast, I'm dead meat in a short time. I'm talking weeks/months from now. I'm serious. My condition is degrading rapidly. I've approached other organizations before to find one, and have been burned badly with their recommendations.
Not an easy thing to offer a referral. Very few referrals are given here, and on other discussion boards you will see that referrals are not given openly and only given via private messaging or email. This is because it is viewed as risky to mention doctors' names if they treat tickborne diseases by applying their own guidelines and not those of the IDSA.

Here on LNE doctors have been mentioned by name - either regarding speculation about how their treatment approach helps - or, unfortunately, by a few people who want to criticize particular doctors. This latter action is viewed as helpful by some, as they see it was warning others about doctors who have done something egregious - but it is viewed as an attack on all doctors who treat tickborne diseases outside of IDSA guidelines by others.

Which does bring us back to the main problem: Neither speculation about how an individual doctor's approach might help nor criticism about particular doctors does the suffering patient any good. Patients need help NOW and to get better, even if it's only a slow, gradual improvement.
intrepid wrote: I was hoping that a forum like this one, that excels in purveying TRUTH, would have a section listing, praising, recognizing the best/better practitioners in this field. Why can't I find this information? Am I not looking in the right place?
I suspect things are the way they are not only because of what I stated above about risk - but also because this forum has a history of wanting to cite scientific evidence to support whatever treatment approach any doctor uses and not anecdote. This is one way in which this forum is perhaps different from others, and the supporting position for this could be what follows:

There are many patients who say a specific doctor saved their life and made them better - and that is fantastic, anyone would be happy for their improvement (and I am) but both mainstream medicine and research scientists need a higher level of evidence than accumulated positive anecdotes. Even if a lot of people claim more antibiotics or certain herbs helped them, certain institutions and people will not accept their claims until there is more evidence to support their claims - usually this is accepted in the form of observational studies and clinical trials.

This is not to say doctors who treat outside guidelines don't help people get better. They do. The issue is that if one is to gain more support from mainstream medicine and research science for your approach, they require that one supply evidence they find acceptable. In the meantime, without such observational studies and clinical trials, doctors continue to treat the way they treat, patients continue to say they've improved, and to some people that is all that matters - and they'd say, "Hey, who cares about what the IDSA says, what Kaiser says, what fill-in-the-blank says? I'm getting better."

And from a practical, individual point of view, they're right - they're making the choice for them which works and is helping them. But from a societal point of view, if more studies on these treatments led to providing evidence they helped, then more doctors would be providing them to more patients who could use them and they would not slip through the cracks so easily. This is the ideal - to have more doctors give better access to treatment for more patients. But it is not the present reality.

This is not just a situation which crops up around Lyme disease and coinfections. It also crops up around ME/CFS, and doctors such as Dr. Montoya, Dr. Enlander, and Dr. Kogelnik have devised their own treatment approaches of which none are particularly backed by guidelines - but they generally get less flack than those who treat chronic Lyme disease and coinfections with long term antibiotics because they aren't using antibiotics amid the concern over antibiotic resistance growing and the general pressure on doctors to avoid and reduce their use.

So many conditions which are poorly understood by medical society at large have a history of being treated off-label and through trial-by-error by those practitioners willing to follow a hunch and by patients willing to experiment. The strength of the evidence to support each treatment for each individual patients can vary, depending on the treatment and what is known about the patient. It's not an easy job to be the doctor to care for patients who either have complex conditions and/or poorly understood conditions - just as it's a pain in the ass to be one of those patients.

In a roundabout way, in saying all this what I wanted to convey was that many people on this forum would like to come up with the evidence needed to support specific treatments so that mainstream medicine and research science would support them, and there would therefore eventually be more doctors using such treatments to help patients. It is not enough for them to hear from someone, "I took x medicine for t time and was cured".

intrepid wrote: 2. There is virtually nothing on the forum about Fluoroquinolone toxicity. Cipro and Levaquin are the most likely culprits in our community. I plan to change this by posting shortly. Levaquin has left me crippled, and destroyed a long list of systemic and organ functions in my body. Some functionality will partially recover in 3-8 years, some effects are permanent. (Can you imagine never being able to never fully walk properly again because your doctor chose the wrong medicine?) This is the result of my LLMD mismanaging medication. I only became aware of the dangers of fluoroquinolone toxicity after the fact, but it only took me several days to become educated into the subject. Why aren't LLMD's doing this reading for me? So, for now, 70% of Bartonella/Lyme sufferers who go on fluoroquinolones long term end up "floxed." And, for now, I'm bed-ridden, in a wheelchair, my liver destroyed, CNS destroyed, major peripheral neuropathy, heart damage, eye damage, my legs are gone/worthless, incredible pain, paresthesia, impaired cellular metabolism (anabolism), interstitial nephritis, constant tinnitus, impaired glucose metabolism, impossible to get good sleep, migraine x 2 level headaches, anxiety (GABA block), anticholinergic effects, and much, much more. I have documents and research reports to support all this. This is not hypochondria, this is real, and it's being ignored by everyone, including and mostly by "doctors."

My suggestion: You don't need to create a new section for this (obviously), but, I think it would be a good idea for some of your more talented, able people to learn about this and post. In the meantime, spread the word that fluoroquinolones should be used as a LAST RESORT, and never as a frontline or first resort antibiotic. It will dump your life down the sh*tter, I promise you. This comes from personal experience. If anyone has any questions on this, I will gladly answer.
Thank you for contributing to the forum on this important issue. I was familiar with the problem, and it one of the main reasons I myself have rejected Levaquin during the course of my own treatment. I also had already shown tendon inflammation/tendinosis due to having contracted Lyme disease (usually this is aggravated by too much activity, and since I was bedridden when it happened, Lyme disease was looked at as the alternative reason for it) and reasoned that I was in a high risk category for tendon rupture if I took the drug so I refrained.
intrepid wrote: Please, everyone, I make these suggestions in earnest, and the greatest humility. Please don't misinterpret my words as arrogance, as I am far from being an arrogant individual. I honestly try to live my life with compassion and lots of humility. Seems necessary nowadays.
I have taken your suggestions with sincerity and don't see them as being arrogant. And I agree - compassion is needed here. More kindness than usual, particularly towards other patients who have suffered for so long. Dealing with tickborne diseases and finding treatment that works is enough of a challenge as it is - what can one do to ease the way?

Re: Newbie/Oldbie w/suggestion about finding doc

Posted: Sat 29 Mar 2014 20:16
by Camp Other
Anyone reading this who is interested in a discussion about why it's difficult to find a new doctor may want to read this thread:

Why Recommending a Doctor Can Be Tricky
http://www.lymeneteurope.org/forum/view ... =11&t=5307