Thursday, March 31, 2011

Notes from Burrascano's talk March 21, 2011


Tuesday, March 29, 2011


Joe Burrascano's March 21st talk in Santa Rosa, CA



PLEASE NOTE:  Because the presentation was so dense and rich with information, there may be some info that was left out. These notes offered by an anonymous contributor. 
Note also:
  • You can download the Word (.doc) file of this info here
  • You can download the PowerPoint slides from here
  • Burrascano's complete guidelines for Lyme treatment can be found here


What About All Those
Unanswered Questions?


A note from Gordon Medical Associates, co-presenters of the event:


Doctor Burrascano had a lot of information to share, and his part of the program ran overtime. No one complained about hearing more from Dr. Burrascano, but it did make the panel section of the program shorter than planned. That, added to the large number of questions asked, meant very few people got a specific response. The physicians sitting on the panel did not want to disappoint those who attended, so they have promised to work their way through all of the submitted questions, and to post them on a new blog on CALDA's website.


Questions will be answered weekly, until all of the submitted questions have been answered. The doctors will rotate answering the questions, so you can hear different points of view. The first installment of answers should be up sometime this week.


Click here:  Putting Lyme Disease Behind You: Questions and Answers with Local Physicians


Send questions to: PuttingLymeBehindYou@gmail.com 

~~~~~
Dr.  Burrascano has treated over 10,000 patients with Lyme since early '80s.

"It is up to you. Learn as much as possible. Do as much as possible. Have a positive attitude."

Dr. Burrascano's definition of Lyme Disease
"Lyme disease is the illness that results from the bite of an infected deer tick; it's not one germ."

 Stages of Lyme

Early Lyme – I
Disseminated Lyme – II
Chronic Lyme – III
-for one or more years – immune system breakdown and its consequences
-co-infections become important
-serologic tests less reliable
-treatment must be more aggressive and of longer duration

The sicker you are, the less reliable the tests; lyme burrows deeper and is no longer easily detected in blood

CD-57 test – the one test that shows how long Lyme has been present (See more blow regarding CD57)

Tick Bites

Only 17% recall having a tick bite (Texas Dept of Health)
Only 36% recall a rash
Only 50% have positive western blot
Co-infections: tests are even less sensitive

Ticks: nature's "dirty needles"; a tick lives for 2 years

Co-infected patients: more ill, more difficult to treat; Lyme treatments do not treat Babesia, Bartonella, or viruses.

**Dr. Burrascano says he has never seen a patient without co-infections. 


Sorting Out Co-Infections
Lyme, Bartonella, Babesia, Ehrlichia, Mycoplamsa

Lyme – Gradual onset, no sweats, 4 week cycles, multisystem, afternoon fevers

It is important to take your temperature several times a day (record in journal)

Babesia – Cycles every few days, makes everything worse

Ehrlichia – Sharp headaches behind eyes, low WBC, elevated liver function

Mycoplasma – Made worse with exercise, aka "Chronic Fatigue Germ", major fatigue, neurological disfunction, found in the sickest and poorest responding; have the worst CD-57 tests

ELISA test – mostly useless; use Western Blot
Spinal Tap – only 9% have + csf
PCRs – 60% sensitivity at best because germ doesn't stay in blood
LDA – 30% sensitivity


Why Igenex?

Dr. B has no affiliation with them, no professional relationship with them, etc…

If a test is commercialized to be sold as a test kit, it must follow narrow CDC restrictions and guidelines. (Ironically, these restrictions were a result of the Lyme vaccine debacle.)

Most Lyme tests are commercial. Commercial Lyme tests miss 75% of cases.

Based on double-blind government proficiency tests, IGenex did well.



CD-57 COUNT (tracks a type of white blood cell)

Lower counts seen in chronic Lyme
Only Lyme (not co-infections) makes CD-57 low

The CD-57 reading does not change *during* treatment … until Bb is controlled. Then it quickly changes.

Predicts a relapse if low when antibiotics end

The CD-57 test must be done by LabCorp's method (using the "normal is >200" scale)
<20 – severe illness
20 – 60 most common for chronic patients
> 60 Lyme activity minimal
> 120 – relapse not likely


Why Are Chronic Lyme Patients So Sick?

-High spirochete load (perhaps multiple bites)
-Protective niches in the body and biofilms allow Bb to evade the immune system and antibiotics
-Immune suppression and immune evasion

Biofilms are a protective layer

Lyme germs live in different forms:
Spirochete – surrounded by a cell wall
Spiroplast – balls up, has no cell wall
Cystic form – has hard outer shell

Lyme germs can live *inside* a human cell, inside the vacule

Doxycycline – can get into the cell
Erithromycin – can get into the cell
Rocephin – does not kill germs inside vacule 


Treatment - Back to Basics

Form a therapeutic alliance with your Dr.; should be able to have "meeting of the minds"


Pharmacology
-It is *critical* that you achieve therapeutic drug levels – this varies from patient to patient
-Antibiotics – you *must* have extra-cellular and intra-cellular meds as Bb can live in and out of cells
-Antobiotics – must act on blood & tissues


Spirochete forms:
Penicillins, Cephalosporins, Primaxin, Vancomycin,

Spiroplast/L form:  no cell wall
Tetracyclines, Erythromycin

Cyst:
Metronidazole, Tinidazole, Rifampin

Spirochete B. burgdorferi – needs sustained levels
L form – Tetracyclines, need a spike in blood levels
Cystic – Metronidazole, sustained levels for 2 weeks +

Antibiotic combinations are necessary
Intracellular and extracellular
Blood and tissue

Intravenous therapy is most effective
Intramuscular Penicillin effective as well

Indications For Intravenous Therapy
-illness for more than one year
-prior use of steroids
-documented immune deficiency
-abnormal spinal fluid
-synovitis with high ESR
-age over 60
-failure or intolerance of oral therapy 

Typical Regimen

Oral
Cefuroxime + Clarithromycin
Augmentin XR + Telithromycin


Injection
BicillinLA + Clarithromycin

Intravenous
Clarithromycin + Telithromycin
Vancomycin + Clarithromycin

-high doses needed
-combination usually necessary
-check for co-infections
-rotate treatments

Rate of recovery dependent on germ; stronger drug will not speed recovery.

Find a regimen that works and stick with it
Change when you've reached a plateau
Treatments: at least 4-6 weeks before changes

Relapses

-relapses occur; retreatment needed
-repeated and/or prolonged antibiotic therapy


Aggressive supportive therapy also necessary:
Sleep cycle
Food
Supplements
Detoxing


As symptoms wind down, DO NOT cut dosage! Resistance develops that way.

Progressively increase exercise program
-exercise is vital and required
-not exercising will increase risk of relapse

If CD-57 is not normal at end of treatment, continue treatment or there will be relapse 
  

Prognosis
-May not cure infections, may need open-ended maintenance therapy

What to Watch For:
Signs of persistence; continued fevers
Four week cycles of ailments
Migrating symptoms
Positive PCR or urine LDA

If you have not relapsed in 3 years, you never will.

What if you're not sure you're over it?
Low grade fever still present
Signs of recurrent four-week cycles
Migrating pain
Low CD-57 counts

  
Bartonella
The Bartonella co-infection with Lyme seems to be clinically different that "cat scratch".
Instead, they are Bartonella-like organisms; more prevelent that Borrelia in some ticks

Clinical Clues
Encephalopathy
Irritability
Anxiety
Stomach lining
Insomnia
Rashes
AM fevers
Night sweats
Tender skin nodules

Bartonella treatment:
Levaquin Fluoroquinolones

Erithromycins don't kill this
Rifampin & Metronidazole may be alternatives
1 – 3 months of treatment


Piroplasms – Babesia
Is a parasite

Symptoms
Night sweats
Air hunger
An occasional cough
Persistent migraine-like headache
A vague sense of imbalance without true vertigo
Encephalopathy
Fatigue


Babesia Treatment
Not treated with antiobiotics

Azithromycine & Mepron
Malarone
Coartem – Antimalarial for Babesia (new)

  
Ehrlichia
Headaches
Muscle soreness
Persistent leucopenia (low WBC)

Treatment
Doxycycline 1st choice



Mycoplasms
"Chronic fatigue" germ
Ubiquitious in environment (in dust, for example)
Treatment is difficult

Worms
New species of nematodes in 63 – 75% of patients from Massachusetts

Fatigue
Lives in lungs mainly
(Dr. Eva Sapi, Dr. Larry Klapow – research)


An open mind is important!!


Biofilms
Dental plaque is an example
Gel-like substance in which germs can embed
Biolfilms in the gut are implicated in many digestive diseases & possibly food allergies and mal-absorption

Biofilm busters:
Banderol plus Samento
Enzymes

Methylation Cycle
Key component of metabolism
Need to bring up methylation cycle
This cycle can be blocked when chronically ill
75% of Lyme patients responded better after  treating



Crazy or Is It Lyme?
Cytokines – mediators of inflammation, are activated. 
When this occurs in the CNS, it triggers diversion of tryptophan into kynurenine
Result: depression, neuropathy, fog brain, "crazy" perception

Bornavirus
Autism-related?
Distant cousin to Rabies and distemper
Brain is the site of infection
Does not damage nerve cells but blocks cell function
Brain fog, fatigue leads to depression

Treatment: 
Antiviral Amantading
65 – 70% success rate

  
XMRV
Xenotropic Murine Leukemia Virus
Virus – is gamaretrovirus, 1st isolated in prostate cancer
68 out of 101 CFIDS samples contained XMRV
XMRV is found on only 3% of healthy samples
XMRV is also found present in cases of: MS, ALS, Parkinsons, Autism, Fibromyalgia
Lyme patients who did not recover: 1005 of them had XMRV

Does it prevent a full recovery from Lyme?
Is it found in ticks?


Treatment – XMRV
Retrovirus is cousin to HIV
-be sure there is not excessive cortisol and DHT
-consider adding antivirals AZT, tenofovir, raltegravir


Basic Advice

NO steroids or other immune suppressives!
No smoking at all
No alcohol (makes germs stronger, weakens immune system)
Clean diet: low carb, low glycemic index, high quality proteins
Maintain hydration (Lyme patients become dehydrated quickly, sense of thirst is altered)
May need mineral supplements


ENFORCED REST

You are NOT allowed to get tired
Take a break before afternoon lag
Work and school – Go in later, leave earlier, take a midday break, take Wednesdays off
Rest on days off
No caffeine, no stimulants
Home should be quiet, comfortable, non-toxic
Nap if needed!!
If you need to sleep late, do it!!


Exercise Program

Body sculpting
Gentle with free weights, exercising all muscles; very light or no weights
NO AEROBICS
Each body sculpting session 45 min; 60 minutes preferred
Begin with good progressive warm-up
Take a hot shower or bath afterward and go to bed. Lie quietly if you cannot sleep.
Never exercise daily
Total rest on off days
As strength improves, increase weight and resistance but maintain high number of repetitions
As stamina improves, exercise more, but NEVER daily.

Dr. B believes: spirochetes choose skin as their final hiding place.

  
Nutritional Supplements

Probiotics  
Ortho Molecular - Ortho Biotic 60 Caps

Multivitamins w/minerals
Ortho Molecular Products - KPAX Immune Support Formula - 120 Caps

CoQ10 or ubiquinone
NOW Foods CoQ10 200mg, 60 Vcaps

NT-factor or "ATP fuel"
NTI-Nutritional Therapeutics Inc. - Healthy Aging w/NT Factor - 120 tablets

Vitamin D – maintain upper-normal levels
NOW Foods Vitamin D3 5000 Iu, 240 Softgels,

Essential Fatty Acids
Nordic Naturals - Complete Omega-3.6.9, 120 softgels

Magnesium
Source Naturals Magnesium Malate 1250mg, 360 Tablets

Methyl B-12 

B complex
Nature's Bounty Vitamin B Complex Sublingual Liquid, 2 Ounce (Pack of 4)

Transfer Factors
4Life Transfer Factor Classic (90 capsules)

Detoxify

FIR Saunas: Helpful to excrete organic toxins


Far Infrared FIR Portable Foldable Spa Sauna Detox Ion, SI01




DEET does not work!! Use Premethrin!Sawyer SP657 Permethrin Premium Insect Clothing Repellent, 24-Ounce SpraySawyer SP602 Premium Odorless Permethrin Insect Repellent 9-Ounce CanPEMETHRIN 6OZ - -Permethrin 10% 32oz

(Developed in cooperation with the U.S. Military, government agencies, universities and others; this Sawyer Clothing repellent offers superior protection from disease-carrying biting insects. The active ingredient, Permethrin is a synthetic molecule similar to those found in natural pyrethrum which is taken from the Chrysanthemum flower. Not only does this product repel insects, but will actually kill ticks, mosquitoes, chiggers, mites and more than 55 other kinds of insects. Sawyer Permethrin repellent is for use on your clothing, tents and other gear. A single application lasts up to six weeks and will remain effective even if you wash the garment once a week. Permethrin is odorless when dry, and during the drying process it tightly bonds with the fibers of the treated garment, it will not stain or damage clothing, fabrics, plastics, finished surfaces, or any of your outdoor gear. Try our two easy-to-use treatment methods: aerosol spray and NEW soak system. Both methods provide protection from mosquitoes and ticks through 6 launderings.)

And the most important part.......

Live with a healthy attitude; 
Lose "poor me", lose anger
Do not become "Lyme obsessed".
Pursue other interests and distractions.
Enjoy friends and family.
Cuddle with your pets.

Saturday, March 26, 2011

Porta-cath installed and Leiden Factor V found


I had a little surgery done Tues to install a 'port' in my chest. It's for administration of antibiotics. They gave me a general anesthetic for that. It hurts a bit. I start IV Rocephin (Ceftrixone) soon for Lyme. A video of the procedure (not for the faint of heart) can be seen here:


My foot and arm tremors are really getting strong and annoying. When I wake up in the morning, they start right up. Unless I stand on the floor, the foot tremors won't stop. Cramping is frequent. Toe joints are enlarging and becoming arthritic.

A new development is the tendency to fall backwards when standing. I keep taking steps backwards to catch myself. Sometimes several. This is typical of Parkinson's, though the Sinemet, Amantadine, and Selegegline I am taking for PD do not seem to help much. Nor do I notice marked decrease of tremor or rigidity. Still experimenting with those as well as beginning Chi Gong for PD. I have located a woman who has cured her PD with Chi Gong as taught by Mingtong here in N. CA Bay Area.   

Turns out a new blood test shows I have extra clotting factor, Heterozygous Leiden V factor, and thus need to instantly get on coumadin and see a hematologist. Sigh. Dr Feig told me years ago we should test my 'coagulation factors' for 'sludgy blood'. Now it's a problem with the port just installed because the port connects to a vein near the neck and a clot could cause a stroke. So I have started coumadin. This gene mutation increases my risk of venous clot 3-8 fold. This is a DNA test and also warns that my relatives could have it too. I have just warned my brothers.  

Monday, March 7, 2011

Amalgam Fillings Clue?

An interesting thing happened last week. Maybe this is a big clue. I went to my dentist to have my teeth cleaned, and while I was there I asked to see my chart. I wanted to see when I had my amalgam fillings removed. As it turns out, I had them removed around the end of 2002, in November. A whole lot of them were replaced with composites. At the end of 2002 is when I got sick! When I read the chart over with the dentist's secretary, I could barely believe my eyes. In eight years of Lyme treatments, why hadn't I checked the date of my amalgam removals?

Just to be sure that the dates aligned, I looked back into my e-mails to friends and confirmed they did (I have all my email back to 1992 stockpiled in archives). So, I got sick about the time I had my fillings replaced. The dentist who performed the removals was not a biological dentist, and he did not comply with the rules that I brought him in an article about how fillings should be removed. He pooh-poohed that idea, saying that he had been working with amalgams for 20 or 30 years, and nothing happened to him. He said people who worry about the mercury in fillings are exaggerating the dangers. I decided to go along with him and let him do the work because he had been my dentist for a long time, and I trusted him. I did insist that he use the evacuation vacuum a lot, but still there were fillings dropping into my mouth, and I was inhaling some of the fumes coming out, I could see the vapor coming out of my mouth. No chelation was used. 

Yesterday, before even knowing this, I felt terrible, and all my symptoms were much increased. Lots of tremoring, even pain. Last night I went to the gym and then into the sauna for about an hour. I sweated a bucketful. Then I came home and had a serious Epson salt bath. Water was very hot. So I'm sure I sweated even more, and got lots of magnesium. I took some gabapentin, and some melatonin and even some oral magnesium, and went to bed and slept longer than I have slept in a long time. In fact, I overslept. That is amazing. Predictably, today I felt much better. My symptoms were minimal. At least they never got to the point of my feeling super frustrated, and my mood was much better. So, it looks like magnesium is a key, sweating to detox is a key, and perhaps I have more mercury in my system than I realize. The issue about the fillings is complicated by the fact that I also had a relationship break up at that same time, so maybe maybe I was hit with at least two stressors at the same time - the relationship break up, and the Mercury. And possibly that exacerbated or brought out the Lyme disease that had been in lurking about in my body all these many years. 

I think I want to focus on some detoxification protocols. I am reading about a couple in a book called "The 10 Best Lyme Disease Treatments" by Bryan Rosner. One of them involves extra-virgin olive oil, Epsom salt, and grapefruit. Then, there are coffee enemas, and a couple of others as well.


Sunday, January 9, 2011

Terms and Conditions and Apple Privacy Policy

Hi computery people,

I wanted to update my iPhone apps today because the little red 'badge' thingy on the App Store icon excitedly signaled that 46 of my carefully-chosen (ha, as though I read 200,000 descriptions and reviews) apps needed updating. Cool! New features! Exciting. Apple loves risk-takers like me. Maybe those half-baked apps I took a chance on, even though there were only three reviews that curiously had the same spelling errors, will actually work now. Like the app that figures out what color my parachute actually is. There's an app for that. Good, because I have still have no idea. Or the one that can tell me how much that box of Rice-a-Roni costs down at the Safeway instead of what I'll pay for it at the upscale store I'm actually standing in and stupidly prefer, against my better judgment, just because the lighting is full-spectrum instead of what a friend of mine calls 'Frankenstein.' You gotta admit that it is def just too cool that the phone reads the UPC bar code on any box and looks it up, and tells me immediately where I can save 2 cents. All I have to is be willing to look like a cheapskate geek at the gourmet-ghetto grocery store, struggling to focus my iPhone camera on a Rice-a-Roni bar code. At least people leave you alone. They think you are either an artist hard at work, or one pork pie short of a picnic. Last week I used the bar-code app along with the Amazon app to score a case of Acai smoothie mix. 

This assumes I can get a 3G signal at the store, which I usually can't. And don't get me started about how many dropped calls during critical moments I have suffered with my cute 3GS and its $129/mo AT&T service. But it is SO fun calling AT&T tech support to complain and, once I get a real person, saying "Can you h ear m e  nooww?" a couple of times before the call drops. I had to call back on Skype.