Need Simpler Version of Burrascano Guidelines

[ksmom1934]

My adult daughter has suffered with chronic lyme for many years.  I recently read Dr. Burrascano's 16th edition of his guidelines but found them too clinical to follow.  It reads like it's for healthcare providers.  I would like to understand more about the various treatments but would have to look up every other word to really understand what he's really saying.  Is there a simpler version out there, a Dr. Burrascano Advice for Dummies?

[mojogal]

I take Welchol. Burascano recommends it for detoxing if you can't take Cholestryamine. For adults It is in pill form and the later is a liquid.

You just have to make sure that it is taken 2 hours after other meds or an hour before. I take it 2 hours before to be safe. It also lowers my cholesterol which went up due to Lyme.

I use to take activated charcoal but switched because of the cholesterol problem.

It does help detoxing so I think your daughter is on the right path.

If you have other questions on it, I will try to help.

Take care.

[JackieCalifornia]

You're very kind --- thank you!  It really is a group effort, though, given that we all have had different experiences and a different assortment of infections and different interests and understanding of the whole mess called Lyme.

I have read a little bit about Welchol, and it sounds like a detox to clear the body of the trash and misery the Lyme bacteria leave behind.  I don't recall anyone else here using it, so don't have any data for you on that, tho someone else here might.

Does your daughter have a Lyme specialist treating her?  Especially after such a long infection, having an experienced doc is very important.  If you want to fill us in on her diagnosis and general approach to treatment, we'd be glad to throw in our two cents ... but remember that none of us (that I know of) is medically trained, but we've all lived through Lyme and its little friends, or are still battling them.  

We're generally hanging around the water cooler here  and will look to hear from you.

Take care -- your daughter is so fortunate to have you there.

[ksmom1934]

Jackie, I've read many of your comments to posters before, many of which were heartbreaking, and you're always thorough, compassionate and extremely informative.  Thank you for sending on your posts and suggested reading.  Watching one's daughter suffer so much leaves a mom in a helpless position.  She's been undergoing a Welchol treatment for the last 5 to 6 months and has only been able to take 1/2 pack every second day due to the pain but she feels she's on the right path.  I, of course, am doubtful, been that route before.  Again, thank you for taking so much time for us and for the others you help.  

[mojogal]

I agree, well said.
Lets write new guidelines.

[Stargazer_Lilies]

One of us needs to write the guidelines. Guidelines by lymie for lymie, and for family or caretaker as well as for those who are not scientific-inclined.

[youvegottobekidding]

I'd like to add another book recommendatin, called "The Lyme Disease Solution" by Ken singleton. This one was recommended by my lyme doc, who is an Ilads member, so it is well endorsed.
Good warnng from Jackie, beware of reading junk.

[Ricobord]

Yes, the Burrascano document was written for other doctors.  I haven't yet found a similar document in laymen's terms for us non-doctor patients.  But given the significant variability of Lyme and its coinfections, you won't find any hard and fast checklist that will give you a yes or no answer for Lyme.  It is a clinical diagnosis best made by someone very familiar with Lyme and it's many presentations who considers history, symptoms, and test results to make a diagnosis (or not).

[JackieCalifornia]

It takes time, but you'll begin to sort out the reliable and thoughtful writers and the not-so-reliable ones, and we all are going through the same problems.

Sometimes it's easy to get off into the confusing weeds of science, but when the 'authorities' are not doing the hard work, that leaves us to do it ourselves ... which is why having a reliable Lyme doc is so critical.  I hope you have found one for your daughter.

And yes, Burrascano's Guidelines ARE written for medical professionals, and they tend to wander around a bit in addition, so you're not alone there.

Others here may also have suggestions -- best wishes to you and your daughter --

[JackieCalifornia]

[continued from previous post]

At the website LymeInfo [dot] net, there is a page of book titles related to Lyme, with the following caution:
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"I would like to provide a word of caution for those shopping for books on Lyme and related infections. The number of low-quality books being published on tick-borne illnesses is increasing at an alarming rate. Many books, some published by physicians, are nothing more than marketing schemes. Furthermore, I feel the reviews of these books at amazon are often questionable, at times written by people who are financially connected. So please keep this in mind when making your book selection."
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I think that's very good advice.  Lyme is a fast-changing area of medicine, and there are bound to be lots of loony theories and books, so caution is the way to go.  After digging around for a while, you'll begin to have a feel for who is more reliable.

After that warning intro at LymeIngo [dot] net, there is a respectable list of books you might find interesting and helpful.

[JackieCalifornia]

Yes, I agree with you:  the Guidelines are written for physicians and not for patients.  

In a normal world, we patients would not need to immerse ourselves in the medical battles and minutiae of Lyme and could trust our docs to handle it.  Call it another unintended consequence of the IDSA's stubborn blindness regarding Lyme.

I just googled 'lyme disease books amazon' to see what would pop up, and one of the websites with a short list of patient-accessible books is LymeNet:
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Patient Guides:

Bull's-Eye: Unraveling the Mystery of Lyme Disease
Jonathan A. Edlow / Hardcover / Published 2003
A compelling mystery and a riveting account of science in action. - Robert B. Parker

Coping with Lyme Disease, Third Edition : A Practical Guide to Dealing with Diagnosis and Treatment
Denise Lang; Kenneth Liegner, M.D. / Paperback / Published 2004
A good guide to diagnosis, treatment, and recovery.

Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders
Karen Vanderhoof-Forschner, et al / Paperback / Published 1997
A complete review of the disease and the issues from the Chairperson of the Lyme Disease Foundation Board of Directors.
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Note that the last book above is from 1997, and that's a very long time in the medical world, so I don't know how current  it is. [see next post]