Lyme, (CFS, FM), XMRV -ILADS 2010 Conference Takeaways

[Guest guest]

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

``````

http://bit.ly/eNuKYO

BetterHealth

Guy.com

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. 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 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. 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

* 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.

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. 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.