lululymemom
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posted
I was able to obtain these notes from another Lyme Forum.
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 -serology 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
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 commercialised 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 -Antibiotics � must act on blood & tissues
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
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 prevalent 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 antibiotics
Azithromycine & Mepron Malarone Coartem � Antimalarial for Babesia (new)
Mycoplasms �Chronic fatigue� germ Ubiquitous 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
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: 100% 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.
Re: Burrascano Notes from March 21st talk � Reply #1 on: March 31, 2011, 05:24:45 AM � Quote
-------------------------------------------------------------------------------- I forgot there is a cd recording for sale of the entire panel discussion, for anybody who is interested. It's $45 (benefits California Lyme Disease Assoc.) and the number to call is 707-575-5180. It includes other medical practitioners.
posted
I was at the talk too. At the panel discussion afterward, Dr. S of CA said 70% of his patients get better.
There is a typo in the XMRV section - it should read 100%, rather than 1005.
There is another discussion of this talk on this board already. I think that is why there is not much response here.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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posted
Has anyone been able to purchase the cd? My doctor said I might have mycoplasma and by what I read from Dr. B. it sounds like it will be a struggle to treat.
So frustrating!!!
Posts: 144 | From Pennsylvania | Registered: Jan 2011
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lululymemom
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I do believe people can get better with treatment, but how many get 100% I'm not so sure about.
Thanks for pointing out the typo, I just copied and pasted from another forum, I will correct that.
posted
My take on Burrascano's overall opinion at the 21st event was that outcomes for patients who follow the protocol strictly get significantly better in almost all cases.
Posts: 357 | From California | Registered: Jun 2010
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lululymemom
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I wanted to make the distinction that getting better may not mean remission or cure. I have gotten better on herbal treatment but I know that I will always be sick. I just think it's a sad reality of the disease.
If you catch it very early, then yes you have a good chance of cure.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Lymeorsomething
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It's good to see Dr. B still feels the CD-57 is a strong marker for chronic lyme.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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METALLlC BLUE
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I think a recovery of 100% is possible. I think that our ability to find a solution lay in being aware that it's possible, period. If we can fly thousands of pounds thru the air, create computers, perform organ transplants, then we can figure this out too and it won't be a lifetime.
Remain optimistic, otherwise you won't invest the effort to see to it that a possibility becomes a reality. Remember, the impossible just takes a little longer.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Thanks, Metallic Blue, sometimes it's nice to see such a positive spin on this disease. It's just been a really long road and everyone I have heard with the exception of a few rare ones, seem to be forever fighting to get better.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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gwb
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Member # 7273
posted
MB, are you saying that you believe there is 100% chance of recovery from this disease now, or in the near future? If now, what is your definition of recovery? Recovery=Cure?
I sincerely struggle with this and wonder if we ever do really recover from this disease (especially chronic late stagers), or do we just manage it and keep it under control with good diet, supplements, herbs, and abx (for those who take them)?
Here's what my Biological doctor has to say about this subject:
I struggle with this because I'd like to believe there's a cure for this dastardly disease, but as of now, I'm not totally convinced. Of course, if we are treated within a few weeks of the tick bite, yes, very curable.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
We're dealing with a number of different conditions, but we will gradually figure it out. It's almost statistically unreasonable to presume we won't given our track record of solving problems as a species. It just takes time. Time which some of us don't have -- but, time nonetheless.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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