Saturday, September 19, 2009

Why BLOG?

As I have said in the past, this BLOG and others are a venue for putting ideas and experiences into the blogosphere for others to consider. My posts have covered many areas of agreement and controvery: mostly controvery. In my mind this is a major the role of this tool. Of course I have meant it to be informative. I learned much from my father. He frequently said outrageous things for the purpose of prodding others into a lively debate: The devil's advocate. If I have "criticized" other LLMDs it must be seen within this context. Please remember that just because something is in writing does not mean it is true.

This war over Lyme disease has been fomenting long before I came into the picture.

A belief in even the possibility of chronic Lyme disease would next exist except for the pioneering work of many who have bravely challenged the establishment, putting their careers and reputations on the line.

I have never intended to impeach the reputations of Burrascano, Jemsek, Jones, Stricker, Singleton, Fry or countless other physicians or scientist involved in this field over a period of 3 decades.

I personally do not know many of the great physicians and scientist involved in this field.
Many of my comments are based on information obtained only indirectly.

I have worked alone in my small corner of the world. By luck alone my office is a stone throw away from Clongen lab: I now have a colleague who helps me contemplate some of the mysteries associated with this illness.

Many clinicians have developed ideas and therapies which have been EFFECTIVE, even though the exact mechanisms were not fully understood by the clinicians at the time. Unable to get attention from mainstream medicine/science many "LLMDs" have functioned independently without the benefit of consultation with others. For example, the small round gram negative bacteria swarming in the blood of so many patients may be the labaoratory equivalent of the BLO described by Dr. Burasccano. The diagnosis was made strictly on clinical grounds. It was Fry labs who first put a face on this organism, giving it a name.

I have tried to the best of my ability to confine many comments to that which I believe has a factual basis supported by evidence of some kind. Much I have written has been editorial: opinion and conjecture; and I hope this has been made clear along the bumpy road.

Lyme disease is now Lyme-Borreliosis-Complex. It is a new and emerging disease. Much remains enigmatic. In essence all I have done is thow my hat into the ring.

I appreciate positive AND negative comments posted here. We are all learning and I suspect we will continue to do so for years to come.

17 comments:

Renee K said...

I am glad you are still blogging, I enjoy your willingness to put thoughts to blog.

There is so much unknown; all of us need to be open to others' ideas.

No one person has all the answers.
The more I research my treatment the more I know this is so.

A good LLMD will offer guidance and his opinion with a mind open to others' opinions. He will build on his past experiences and learn from his patients.

My doc seems to treat this way and I am so greatful for that fact, it has given me back a tolerable life.

You also appear to treat each patient individually and to have helped many.

Thank you for being among the few willing to go against the tide.

And please keep on blogging.....

summer09 said...

Hi! I am wondering if you could recommend a LLMD in the Boston area. I have been on your blog often in the past month or so with my lyme searches. I am finding your blog to be very helpful. For instance the list of the standard tests you give you patients. Thanks for your help!

Lori said...

We are so very grateful to have you back!!!
"Why Blog".... because we need your knowledge, your opinions and your patient stories (especially the ones that get treatment and get better!!)
Thanks again for the time and effort you put into your blog!
Hang in there!!

Carey said...

Welcome back. I hope your sabbatical from blogging was restorative. I've learned much from your blog; I'm a patient of R. Stricker, Lyme + Babesia, finally in treatment since May 08, ill for 20+ years.


You're a talented writer. I'd like to see this work turn into a book some day. Without a scientific breakthrough, I think the entrenched Lyme-bias will be with us for some time. We need to be heard. In the meantime, thanks for sharing your knowledge and perspective.

MJ said...

WHY BLOG? JUST BECAUSE...!
Yes there might be one who criticize some of what you say but because they have not read it all, or they are really sick and cannot understand the content or the purpose of your writing; but for the majority of us, your Blog is our way of sharing, feeding, learning and specially fighting this horrendous experience. You are our voice, but a voice with knowledge, a voice with experience and have shown to be a voice with a real interest in helping us so needed; and also a voice with a true scientifically interest in trying to solve this not resolved illness.
I have not read you saying you know more than anyone, nor criticizing other docs in an arrogant way; I have read different approaches to this situation, considerations to treatments and procedures and yes, the fight here is against those who decided that Lyme could be treated with just two weeks of Doxy and then leave the patient to suffer for ever. I have no enough words to thank you for this BLOG, and I recommend it to everyone, everywhere. Because that lonely voice is our voice and without it we would be lost in the treatments imposed by the CDC and IDSA. "Great to have the people talking, good or bad, but talking"! As a journalist I also had to show the bad in order to have it fixed!

So, bugs ah? bacteria, parasites, worms, protozoan... ha, tremendous cocktail we got!

Thank you again, and God bless. Please keep on blogging and blogging!

MARIAJ.

glytzhkof said...

I just want to add my two cents to the previous comments: I find this blog to be perhaps the single most illuminating and educating source of information on Lyme treatment available on the web - and I am not kidding. There is so much information elsewhere, but most of it seems to be a patch-work of "copy paste sessions" from other Lyme descriptions. You end up reading the same stuff over and over in slightly different flavors - and you get the feeling that you are reading stuff that's written by people who don't fully understand the issue - but just regurgitate what they have heard others say and write.

In my opinion this blog goes beyond other sources of information because of its solid scientific foundation, the descriptions of real, clinical cases, the openness and keen scientific curiosity expressed in a willingness to "conclude in questions" rather than absolutes - as well as the non-dogmatic "let's try this" approach to treatment. For those of us who have fought to get even the most basic prescriptions, who have been ridiculed and thrown out of the offices of infectious disease specialists, and in general been unable to find proper help - your blog is more than just information, it's the hope we've been looking for.

I don't see any arrogance in anything I have read here - just plain, open-minded scientific "trench guestimates", a love of your trade and a genuine wish to help people. I guess it's all in the eye of the beholder - people see things very differently. I don't understand why disagreement is so difficult to handle - as the saying goes: "...you don't learn anything new when you're the one talking". Disagreement and discussion is the key to understanding in my world. I also can't recall having seen any attacks on other LLMDs in this blog?

Looking forward to lots of new blog reports from the Lyme-trenches.

Max said...

Why? It is extremely helpful and unique resource, especially for patients! One of the best resources to see a perspective of an intelligent MD who treats chronic lyme, something which is really hard to come by.
Serves as great reality check and anchor in a murky area of "Lyme" with its awful politics, horrible testing, complex (and often dangerous) treatments and questionable alternatives

Can't discuss those things with Dr in their office- not enough time, even if you lucky to have good doc.

girl mark said...

Thank you again for the blog. Please pursue turning it into the book you originally contemplated.

Ramilin said...

Glad you are back to blogging!
I enjoy all you have to offer via blog and in person (lucky for me, you are my doctor).

You are very insightful and have alot to offer. Keep blogging because there are thousands of folks who have learned about lyme through your blogging (me included). You are the only one that is brave enough to blog and educate about this disease publicly. So many LLMD's are forced into hiding what they are doing, you are not. There is alot to be said about that.

NancyB said...

I've just found your blog in the past few months and appreciate your perspective and willingness to share your thoughts and experiences.

Question: you said--"the incredible wet mount exam: Numerous blood wet mounts of tick borne disease patients have now been studied."

Is this a study of yours and are you doing the analysis? We recently have seen an acupuncturist who does this testing but is new to the world of Lyme related illness. From what I've seen via youtube this is a very exacting science--so much going on in a slide that if one doesn't know what they are looking at, information could be lost.

How much weight do you give this kind of diagnostic when working with a patient? Also, is there any information for a practitioner who is new to Lyme?

Thank you.

Don said...

As a Lyme family of four, we appreciate the work you are doing and the discussions you start. This disease has nearly ruined our lives, but we're still fighting as best we can, and knowledge is our greatest weapon. Thanks.

searchingforhealth said...

I enjoy reading you blog. However, I never see you address viral issues. Many w/LD have reactivated viruses, everything from CMV, HHV6, EBV, HSV and more.
I have had consistent Igm HSV1 viral titers that my doctor really seems concerned about and no oral antiviral is bringing the titer down. What is your opinion on viruses, do you think they cause system symptoms that mimic Lyme & Co's?

Zazul M said...

I would like to ask if in your opinion the Lyme may cause a Devic syndrom. If so, may abx therapy give an improvement? I'm asking on behalf of a women with positive tests for Lyme disease (borreliosis + babesia). Thanks in advance and regards from Polish Lyme Disease Internet Forum

zazul

sue said...

I just found your blog. I live in northern California, S.F.Bay area. After umpteen misdiagnoses, I diagnosed myself FROM THE INTERNET, and then found Dr. Stricker the same way. I had Bartonella and still have lyme. The Bartonella is now cured and I am now on azithromycin and cefdinir for the lyme and fighting like the devil to get rid of this. I cannot tell you how refreshing it is to read your comments - vulnerable, caring, and learning as you go. I admire your honesty, integrity and williness to share your expertise with us "lay" people. I will pass this blog along to all my lyme friends (growing) here in one of the most endemic lyme areas of the country. It is fascinating. Please keep blogging.

sue said...

I just found your blog. I live in northern California, S.F.Bay area. After umpteen misdiagnoses, I diagnosed myself FROM THE INTERNET, and then found Dr. Stricker the same way. I had Bartonella and still have lyme. The Bartonella is now cured and I am now on azithromycin and cefdinir for the lyme and fighting like the devil to get rid of this. I cannot tell you how refreshing it is to read your comments - vulnerable, caring, and learning as you go. I admire your honesty, integrity and williness to share your expertise with us "lay" people. I will pass this blog along to all my lyme friends (growing) here in one of the most endemic lyme areas of the country. It is fascinating. Please keep blogging.

OBLIVION said...

Why BLOG...

I BLOG on LymeGreenAustralia in hope that others may not have to travel the same path I have, that is being misdiagnosed for over a decade...
It is only through accumulated knowledge that society moves forward, and this is what you provide with your BLOGs on LymeMD, a comprehensive resource of your experiences in hope of not reinventing the wheel over and over.
I wish there were more like you.

bitten said...

I posted on the last blog but in case you are not looking at it anymore I'm glad you are back and interested. I agree with the last blogger on the viruses and immunology. I would like to know what you think about fever treating? It seems to have returned with Chronic Lyme in other countries as people are desperate. I'm considering it as conventional therapy has not worked for me. It seems to be scientifically and logically understandable but I don't have a MD so I wondered about your thoughts as I see this becoming popular in MX and Canada (closest countries) and other countries.