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>>>> 30 December 2010 <<<<
Editorship : j.van.roijen@chello.nl
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Special Edition
Quote from Dr. Joe Brewer:
*....In one autism study, all mothers tested were XMRV
positive and many of them expressed symptoms of Chronic
Fatigue Syndrome or Fibromyalgia....*
~jan van roijen
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http://bit.ly/eNuKYO
[]
Thursday, December 30, 2010
ILADS 2010 Conference Takeaways
In October 2010, I attended the ILADS [http://www.ilads.org/]
2010 Annual event. The event was packed. Almost 400 people
attended in person and over 1,000 people watched on the live
webcast. It is exciting to see so many people taking an
interest in this controversial area of medicine. The event was
full of great information and people working hard to help us all
find answers.
In this blog entry, I will share a few of the key takeaways that
I learned at the event. The slides from the event are
available for purchase here for a very reasonable $40. The
DVDs (Friday's sessions) and CDs of the presentations can be
obtained from ZenWorks Productions.
Thus, I am not going to attempt to repeat information that is
available elsewhere, but I will focus on some of the key things
that caught my attention.
* The 2011 ILADS event will be in Toronto, Canada -
October 28-30, 2011
* Dr. Richard Horowitz proposed that Chronic
Lyme is really MCIDS - Multiple Chronic Infectious
Disease Syndrome
* Biofilm treatment may be with EDTA or a
Banderol/Samento combination. There may be a strong
antigen release with biofilm treatment which may make it a
good candidate for pulsed therapy
* Dr. Steve Harris mentioned that yeast may cannibalize
dying Borrelia and that yeast is not always the result of
antibiotic therapy alone. He suggested up to 100 billion
probiotic organisms daily. In terms of diet, he said, "If it's
white, it ain't right"
* Minocycline may have longer toxic effects than
doxycycline but has better CNS penetration. Mino also has
less sun sensitivity than doxy. That said, Dr. Joe Burrascano
commented that the effectiveness of minocycline may be
regional as he never observed it working well in his patients
* Tygacil can be difficult to tolerate but has emerged as an
excellent tool for some patients in the treatment of chronic
infections
Dr. Joe Burrascano shared:
* New pathogens will likely continue to be discovered such
as XMRV / HGRV
* Biofilm-busting treatments are just the beginning of what
will come
* When Borrelia is the only infection involved, the onset of
symptoms is slow. There are no sweats. A 4-week symptom
cycle is observed. There is often joint involvement, swelling,
and stiffness. Temperature may be high in the late afternoon
but low in the morning. Headache is often in the back of the
head
* CD57 suppression may occur in XMRV as well as in
Borrelia. (Editor's Note: There was also talk at this event of
Chlamydia pneumoniae causing CD57 depression as well as a
discussion of CD57 going down when one is in the midst of a
Herxheimer or die-off reaction. Thus, it seems that CD57 may
not be as specific for Borrelia as may have been previously
believed. That said, I do still believe it is an important marker
to help provide additional insight as to whether or not
someone may have Lyme disease and when they may be able
to stop antibiotic therapy with a lower possibility of relapse.)
* If a relapse occurs within 3-4 weeks after stopping a
therapy, this may be Borrelia. Anything sooner would more
likely indicate a co-infection
* Bartonella may result in light sweats, CNS/Brain
involvement, anxiety/rage, sore soles of feet in AM, 99.5
temperature in AM and normal in afternoon, lymph gland
involvement, elevated VEGF, seizures, feeling rev'd up,
gastrointestinal complaints, and nodules under the skin
* Babesia may result in abrupt onset of symptoms,
symptom cycles of every 3-7 days, fatigue, global headaches,
dry cough, air hunger, and coagulation cascade irregularities
being triggered. When Lyme disease is really bad, Babesia is
likely a co-factor
* Ehrlichia may result in abrupt onset of symptoms, muscle
involvement, high fevers, low WBC and platelet counts
* Rocky Mountain Spotted Fever (RMSF) results in a spotted
rash including on the hands and soles of the feet
* Mycoplasma does not currently have any good tests
available. It is a common lab contaminant which makes
testing difficult. Leads to neuropathy and fatigue. Infects the
mitochondria of the cells and leads to the sickest and most
chronic patients. He mentioned that building the immune
system and getting rid of Lyme is often the focus here rather
than going after Mycoplasma specifically
* C6 ELISA is generally never positive in chronic Lyme and
not useful as a result
* Spinal taps are done to look for OTHER things; not to look
for Lyme
* Stonybrook has a good Western Blot but only reports all
bands when requested; otherwise reports CDC bands which
exclude the most important 31 and 34 bands
* Flagyl must be taken for 14-30 days minimum to have any
impact on Borrelia
* If someone has chronic Lyme but does not do IV therapy,
the chances of them recovering are small
* Never taper the dose of antibiotics. When it is time to
stop, stop. Tapering off may create resistant organisms
* Exercise is a key to recovery
* In chronic Lyme patients, 100% may be XMRV / HGRV
positive
* Kefir is an excellent source of probiotics
````````````
* There was some discussion from Dr. Fry's talk (which I
was unable to attend) that decreasing lipid intake may be
helpful. I'm hoping to understand this more from the audio
CDs of the talk. There was also discussion that Magnesium
stearate can increase the amount of biofilm
````````````
* Dr. Richard Horowitz mentioned:
o He has had success with IV Glutathione for
detoxification - helps with fatigue and depression and
improvement is often observed within minutes
o Almost every Lyme patient is testing positive for
heavy metal toxicity
o 40% have adrenal dysfunction
o The Western Blot from IGeneX has both B31 and 297
Borrelia strains where many other labs use only B31 which
makes their Western Blots more likely to result in a false
negative
o Mepron and Malarone dosages may need to be
increased to higher dosages than previously used. Mepron - 2
teaspoons twice a day with Septra or Bactrim may be useful
for Babesia. Malarone may require 4 tablets daily with
artemisia. Coartem (Riamet) can be done as a 3 day pulse per
month and has been very helpful for some patients
o Bartonella can have significant eye-related symptoms
o Gentamicin is bacteroicidal
o Bartonella infection has been found in newborn
children resulting from pregnancy
o Probenecid may help reduce Quinolinic acid - a toxin
produced by Borrelia
o 200 billion probiotic organisms daily is often
necessary
* Paul Ewald suggested that microbes that cannot
transmit frequently favor persistence in the body (i.e. sexually
transmitted microbes do not have the same opportunity to
transmit vs. airborne microbes which much more easily
transmit from one person to another). He lectured on the
connection between many chronic illnesses and chronic
infections
* Dr. Ray Stricker shared the following on the
topic of testing:
o Band 39 is the most specific for Borrelia
o IgM Western Blot has more possibility of a false
positive result than the IgG Western Blot
o CD57 may be affected by Borrelia, Chlamydia
pneumoniae, and Tuberculosis
o CD57 will generally go down within 3 months of
infection
o According to Dr. Stricker, the test is valid for children
(though responses may be exaggerated) though Dr. Jones
shared that he did not find it to be very helpful with children
o CD57 may go down with Herxheimer reactions.
Inflammation may result in a drop in CD57
o Elevated CD57 such as 400 may occur. HIV patients
do exist with high CD4 counts as a corollary though the CD4
cells may not work well or function properly. Thus, CD57 can
tell us the quantity of the cells but the issue may be the
quality or whether or not the cells can function optimally.
(Another practitioner suggested that many cases of high CD57
show drops in CD57 results once treatment begins)
o Stem cell therapy is not known to affect CD57 counts
though another practitioner commented that she had seen an
initial drop in CD57 after stem cell therapy with continued
ongoing increases as time passed after stem cell therapy
o C4a is an inflammation marker. It generally
correlates with symptom presentation
o C3a is an autoimmune marker
o C4a can be due to infection
Dr. Norton Fishman shared information on the
immune system and cytokines:
* Noted that Lyme is a "politically incorrect illness"
* Dr. Herxheimer died in a Nazi concentration camp
* One of his diagnostic criteria for Lyme patients is a
person that feels that each time they take antibiotics, they
get sick. Generally, this is not an allergic reaction, but a
die-off reaction.
* There is an exacerbation of inflammation with a herx
reaction. Some herxes are more mild and may suggest that
you are on a good path much like a speed bump. However,
when a speed bump in the road becomes a guardrail, you have
a problem
* Opportunistic infections may not do much while the
"police are are on the street" or the immune system is on
alert. Some Lyme patients don't get colds or flu. When
treatment begins, opportunists may emerge
* When a herx is too much, pulling back on the therapeutic
throttle is often appropriate. There is no place for heroes in
this disease. Herxes can be terribly damaging
* Some agents will slow the inflammatory reaction such as:
Willow Bark, Omega-3, zinc (many are zinc deficient),
turmeric, ginger, licorice root. Many of these quiet down
NFK-ß. Probiotics help dampen the cytokine response in the
gut. His favorite is Vitamin D3
* Vitamin D3 is turned by liver into D,25 which is converted
to D1,25. Macrophages increase Vitamin D1,25 production
when activated. Many Lyme patients have high D1,25 and low
D,25 which indicates they have infection. D1,25
downregulates the pro-inflammatory cascade and makes
peptide antibiotics. People with higher Vitamin D levels have
fewer infections such as TB and flu
* Many people experience a "herx" when they get "Lyme 2"
on top of "Lyme 1". Immune memory of "Lyme 1" explodes
when "Lyme 2" is introduced. The response is much more
exaggerated with the second Lyme infection than the first.
Once new antigens are introduced, the patient may become
much sicker
* People with Lyme are mosquito and tick-attractive; likely
related to a pheromone
Eva Sapi, PhD talked about the many exciting
projects that her team is doing:
* They are looking for XMRV in ticks to see if the retrovirus
may be transmitted by tick exposure
* They did some excellent research showing Samento +
Banderol + Serrapeptase (all from NutraMedix) had very
significant biofilm eliminating effects
Dr. Joe Brewer spoke on the topic of XMRV:
* Endogenous retroviruses are viruses that we all have.
These cannot complete replication and are not infectious.
They are something that we inherit in our DNA
* Exogenous retroviruses are viruses that can replicate
outside of the cell and are infectious
* Xenotropic (as in XMRV) - the virus does not complete its
life-cycle in the mouse but does in humans
* XMRV is a much simpler virus than HIV
* XMRV does incorporate itself into our DNA
* XMRV uses a receptor X-pr1 that is present on all human
cells and thus can infect all human cells
* We now have both X-MLV (xenotropic mouse leukemia
virus) and P-MLV (polytropic) forms of the virus
* In CFS, both X and P have been observed
* In HIV, HAART (Highly Active Antiretroviral Therapy)
therapy is a three-drug (generally) combination used for
treatment of HIV
* In one autism study, all mothers tested were XMRV
positive and many of them expressed symptoms of Chronic
Fatigue Syndrome or Fibromyalgia
* In a small sample of MS (4), Parkinson's (1), and ALS (1)
patients, 100% of those tested were positive for XMRV
* In chronic Lyme disease, over 90% of those tested were
positive for XMRV
* How XMRV is transmitted is still not fully understood but
we do have HIV as a model. Blood transfusion, sexual
transmission, and needles may be mechanisms. They are not
seeing rampant CFS in gay men or prostitutes so there must
be other mechanisms. One German study showed XMRV was
found in saliva. There is little doubt that in-utero and breast
milk transmission is possible. One unknown is whether or not
ticks may also have XMRV and could they transmit XMRV to
humans? That work is being done by Eva Sapi, PhD and her
team
* Current possible treatment options for XMRV include:
Zidovudine (Retrovir), Tenofovir (Viread), and Isentress
(Raltegravir). All two drug combinations worked better than
any single drug
* There is not a perfect testing method for XMRV
* XMRV often gets worse at the onset of treatment and
treatment has been a mixed bag thus far. Tests are needed
to monitor treatment progress. The P-variant may require
entirely different anti-retroviral medications
* Known inducers of XMRV/HGRV activity include: NFK-ß,
possibly treating Lyme with antibiotics leading to a strong
herx which results in inflammation could increase the
replication of XMRV, glucocorticoids activate viruses
(cortisol/stress), and androgenic hormones. I was struck by
the comment that a Herx reaction from Lyme treatment may
actually increase the activity of XMRV
````````````
During Q&A, Dr. Fishman acknowledged the
politics involved in Lyme disease. He suggested
that XMRV may be the pathway that we should
pursue in order to benefit ourselves
````````````
Dr. Richard Horowitz did a lecture on integrative treatment
of Lyme disease which was one of my favorite lectures. I would
highly recommend getting the audio recording of his session
as it was one of the best. I don't begin to touch on the
wealth of information that he shared over this two+ hour talk.
He shared the following (and much more):
* He suggested we need to broaden our view of Lyme
disease and look at all of the other factors involved. He
suggested that it is like having 14 nails in your foot - you
need to pull out all 14
* In 5,000-6,000 patients tested, everyone is "loaded" with
heavy metals such as mercury and lead
* Most "sickness behavior" (i.e. what makes us feel sick;
symptoms) is the cytokines. Glutathione reduces this in
minutes in many patients
* 1/3 of his patients have had a severe history of abuse;
these emotional traumas need to be dealt with in order to
recover. These are the most resistant patients. When the
trauma is cleared, the patients improve. He mentioned a
technique called "The Journey" (http://www.thejourney.com)
* 40% of patients have adrenal dysfunction which must be
addressed; patients will not respond to antibiotic treatment
without adrenal support
* 70% of patients have peripheral neuropathy
* Low Dose Naltrexone (LDN) can be very helpful in
lowering cytokines and thus relieving many symptoms
associated with the disease. Always remember the cytokines.
LDN can be a big help here
* Bicillin is one of the best antibiotic options at 1.2 million
units 2-4 times per week
* Biaxin XR is better than Biaxin
* Grapefruit Seed Extract can be an effective cyst buster
* When using Flagyl, supplemental B-vitamins may be
helpful to avoid peripheral neuropathy
* A combination such as Doxycycline or Minocycline with a
macrolide and Plaquenil may be a good option. Plaquenil
alkalinizes the intracellular compartment
* You cannot combine a macrolide with a quinolone
* Magnesium and Alpha-lipoic acid taken away from a
quinolone may be helpful in reducing the risk of tendon
damage
* Factiv is a newer drug sometimes used for Bartonella that
is generally tolerated well
* Mepron resistance is becoming a problem and 1 teaspoon
twice daily is no longer working
* The goal is not to "cure" or "eradicate" but to lower the
load so that the immune system can manage. We will not
eliminate all of these organisms entirely from our bodies
* Mepron plus Sulfa/Bactrim; or Malarone (up to 4 tablets
daily) plus Artemesia may be useful for Babesia. No CoQ10
can be used with Mepron or Malarone
* Coartem (Riamet) is a new option in the US for Babesia.
It is a 3-day course. No macrolides, no QT-interval impacting
drugs, no Plaquenil, no Mepron/Malarone for a period before,
during, and after the Coartem; works well, but the Babesia will
still come back
* Babesiosis is extremely difficult to "cure" (i.e. fully
eradicate)
* Olive leaf is a good option for viruses
* For Candida, oregano, garlic, caprylic acid, Pau D'Arco,
and berberine may be useful
* Autoimmunity is likely driven by intracellular bugs such as
Mycoplasma
* Alpha-lipoic acid pulls metals and regenerates glutathione
* Quinolinic acid (QUIN) is a major neurotoxin in Lyme
disease
* For environmental toxins, far infrared sauna can be a
good option
* Up to 25% of patients with MCIDS (Multiple Chronic
Infectious Disease Syndrome) improve on a metal
detoxification program. This may also be related to
autoimmunity
* Detoxamin or oral DMSA may be used for heavy metal
detoxification
* Xymogen MedCaps DPO (dual-phase optimizer) can be a
useful detoxification support option
* Environmental chemicals can be tested for with
Accu-Chem / MetaMetrix
* Glutathione can be used for quinolinic acid or for
cytokines
* On the Cowden Protocol: Glutathione works better than
Burbur or Parsley in his experience and he did not find the
protocol to have a strong enough effect on Babesia.
Otherwise though, Dr. Horowitz reports very positive results
with the Cowden Protocol
* Take-home message: DETOXIFY YOUR LYME PATIENTS!
* It does NOT matter what antibiotic you give people, they
will NOT get better without detoxification
* For Herxheimer reactions: 2 Alka-Selzer Gold (no
aluminum) in 8 ounces of water with lemon or lime followed by
6-8 capsules of glutathione or 1500 mg or oral liposomal
glutathione. 70% will feel better in hours
* On the topic of water: Dilution is the solution to
pollution. This suggests that in order to help our bodies
detoxify, we must drink more water
* His goal of treatment is to get off antibiotics as soon as
possible and that is why he is so interested in the various
herbal protocols such as Cowden and Buhner but he believes
that it is critical for scientific studies to be done in these
areas
````````````
ILADS 2010 was a great event full of great people
looking for answers. I can't wait for the 2011
event!
Note: Please contact me
[http://betterhealthguy.com/joomla/contact] if any errors,
omissions, or misstatements are identified in the content
above.
My apologies in advance to any presenter that I may have not
accurately reflected above.
~~~~
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