Lyme Borrelia Out-Reach Foundation, Inc.
LYME DISEASE SEMINAR
A SPECIAL THANKS
To cheryl@cougar.aero-vision.com for compiling the recap of this Seminar
The Lyme Borrelia Out-Reach Foundation held a "SEMINAR" on Lyme Disease and OTHER Tick Borne Pathogens at the Southhold Town Recreation Center,
on Sunday, May 23, 1999 on Peconic Lane in Peconic, N.Y.
The purpose of this Seminar was: To provide up-dated, accurate, state of the art information regarding "Tick Borne" diseases to all of our community!
I
thought you all might be interested in hearing about it! First to speak
was Steve Nostrum R.N., the foundation’s director, who basically set the
stage for what was to come. He gave an overview of the disease, some
personal history, as well as some information about the organization. One
thing he shared that I think we really need to share with our non-lyme
friends, in case they ever get the rash and go to the doctor (who often say
it’s a spider bite) is that a spider bite HURTS! Also, you can see the
bite, and the rash develops below the bite, not around it. A tick bite is
not felt.
Next to speak was Dr. Butchma. Dr. Butchma stressed the importance of
sitting down with the patient and spending the time to take a complete
history and actually believe what s/he says! He was very sincere.
Next was Dr. Burrascano, followed by Mr. Simons, PA. Some of what they
shared overlapped, but Dr. B. basically covered Lyme being a “syndrome” of
multiple co-infections, while Mr. Simons focussed more on treatment. I was
highly impressed with the both of them. I would like to share a few points
that they made that I found particularly informative.
Dr. Burrascano raised the question, why are some sicker than others? Why
is it easily cured in some. One aspect is certainly the host’s environment
(ie. weakened immunity). However, another possibility is something he
referred to as “germ load”. This means that the body tolerates its first
infection OK, with no signs of illness. BUT, then the person is bitten
again, and because of this germ load which becomes too much to battle, the
person becomes very sick. He shared a study on this that was done in
horses. They didn’t get sick the first time, but six months later they
infected them again, and boy did they get sick.
Dr. B. talked quite a bit about piroplasms. There are 13, and the only one
that has a name is babesiosis. Interestingly, at least 90% of his chronic
Lyme patients have tested positive for babesiosis. In fact, he said they
are now questioning anyone who does NOT test positive, still being
suspicious that they may have it!!! It commonly causes brain dysfunction
and headaches, so he said to watch out for the arthritic symptoms clearing
(lyme), but the other symptoms persisting. Suspect babesia! Three things
he pointed out about babesiosis:
1. much more common than originally thought
2. high fever is rare
3. becomes chronic when lyme is chronic
An interesting thing is that babesia hang out in spinal fluid, which is odd
considering that they are blood parasites!
He said that in ehrlichiosis, the person usually becomes sick within 24
hours, whereas the lyme patient takes longer. It also changes the blood
count right away. Doxy is the ONLY treatment. Dr. B. then commented on a
“mystery germ”. This is tied into flagyl, which some Lyme patients are
responding to, but it is ineffective against any KNOWN tick germ!
The next subject he brought up was stealth viruses. 297 out of 300 chronic
patients tested positive for stealth viruses. At first he had questioned
the lab, but then the lab tested other samples and didn’t get the same
response, but again got positives for his patients. These formerly latent
viruses are reactivated in the Lyme patient because “the environment is
crappy”. (environment=our bodies). He then said he uses standard labs to
test what these viruses may be, ie. Herpes 1-8, to know what to treat it
with.
He then mentioned the SPECT scan, which can show which specific lymebrain
symptoms that particular patient is experiencing. He said the best place
for it is Columbia in Manhatten, as the report says “abnormalities
consistent with Lyme”, which certainly helps for insurance. In the
question and answer part he said they do spinal taps only to rule out other
infections, not to diagnose Lyme. The tests for the spinal fluid are just
as inaccurate as other bodily fluids, and they prefer to do SPECT scans.
The next topic was neurally mediated hypotension. Any infection can cause
a decrease in blood volume. Adrenaline is released, Blood pressure drops.
Medications are used to treat this, but they highly recommend against
treating this without a tilt table test. Also, treatment can involve 10-20
g of salt/day. Since Lyme is backwards, beta blockers, which are used to
decrease BP, are used in Lyme patients to increase BP.
Other associated disorders involve the thyroid, which may need treatment
with preactivated type hormones. He said the thyroid can test perfectly
fine, but there is a change that occurs with the hormones. There is also
leaky gut syndrome, which means patients should do a rotation diet. There
is cell damage, therefore we need to take vitamins. He also stressed how
alcohol is a BIG HUGE HUMUNGOUS NO NO for lyme patients! Alcohol makes the
spirochete more toxic, as well as inhibiting the specific part of the
immune system that fights Lyme. Also, yeast overgrowth ferments any grain
or sugar, making the patient feel hungover without drinking alcohol.
Lastly, he stressed the importance of exercise. BUT, not just any
exercise, he said it is a very specific rehab program. It is in his
guidelines. He said patients will never get better if they don’t
recondition.
Mr. Simons spoke next, and he pointed out that Lyme “syndrome” is a
triangle. At one corner is Lyme, in the other corner is co-infections, and
the third corner is associated disorders (ie. BP, leaky gut, thyroid)
caused by the lyme. All corners need to be treated in this triangle in
which the most important part, the patient, is in the middle.
He briefly touched on early Lyme, in which he said two drugs of choice are
doxycycline, 400-600 mg/day for 4-6 weeks, or ceftin, 500-1000mg/day for
4-6 weeks. In both, he stressed the importance of checking blood levels.
In a chart study of 67 patients with chronic Lyme, ALL had either a delay
in dx and treatment OR inappropriate early treatment. He said it is very
very important that lymies NEVER take any steroids.
OK, for those of you who have made it this far, you get the latest news!
Just recently, they started using actigall medication for patients being
treated with Rocephin. This helps circulation and reduces gallbladder risk.
He commented briefly on babesiosis, and said that 5 out of 100 patients
could tolerate treatment with cleocin/quinine, and that most did better
with from 6 weeks to several months of mepron combined with zithromax. The
mepron alone didn’t cut it. For some who don’t respond to this, they are
now adding in a sulfa as well.
Chronic Lyme, “more than just an infection”. In cases where some neuro
symptoms don’t respond to antibiotic treatment, they try combining it with
diamox, gingko or aspirin to help increase blood flow to the brain.
Other things they use are vitamin B injections, magnesium injections, fatty
acids, CoQ10, Green tea, cordyceps. Many patients respond very well to
these! HBOT was commented on briefly. Mr Simons also stressed that if not
exercising, will NEVER get better. He said patients must take the plain
yogurt, not the sweetened with fruit stuff, which inactivates the
lactobacilli. For yeast in the mouth, rinse with an alcohol free mouth
wash, ie. Rembrandt, and then spread acidophilus around the mouth.
He closed by stressing to always approach Lyme as a syndrome, and therefore
antibiotics are NOT enough.
The last 2 speakers were veterinary doctors. First was Dr. Timpone, who
said that dogs mostly manifest symptoms of lameness, joint problems, and
sometimes acute kidney dysfunction. No one knows the length of treatment,
although they often use 4 weeks of the –cyclines and are open to
retreatment if necessary. Sixty percent of dogs in endemic areas test
positive. There may be several aspects. Perhaps the immune systems of
dogs are better able to fight the bacteria, or they might not manifest
symptoms. It’s hard because dogs don’t have keys to lose! Lyme in cats is
poorly understood. Cats are less likely to contract Lyme, as determined by
testing as well as presentations of symptoms, even when multiple ticks are
found on them. HOWEVER, cat owners need to be careful, because cats may be
carriers of the disease, even if they don’t get symptoms themselves.
Careful with the litter box.
Check your dogs for ticks. They are often found around the eyes and ears
and foot pads. Frontline is a good preventative.
Last to speak was Dr. White, DVM. He spoke about babesiosis and
ehrlichiosis in animals. They see things like fever, anorexia, anemia,
weight loss, cns difficulty. He expressed that this is rare. He also
stated that 2 drugs used for canine babesiosis in europe are not used here
because they are not FDA approved. He shared some other info as well on
these infections in animals.
Well, I hope this info is helpful to you all!
