Lyme Symposium at UNH: Part 2

After a year of reading about Dr. Joseph Burrascano, I got to hear him speak...live! I swear, I felt like I had won a lottery ticket to a Lyme Conference. Here I was, in a room filled with some of the most brilliant scientists and medical practitioners. And it was free. I was in the presence of Dr. Eva Sapi, the ground-breaking scientist who discovered that Lyme creates biofilm, as well as Dr. Charles Ray Jones, Dr. Judith Leventhal, Mrs. Sandy Berenbaum, MSW and graduate students who will help to change our world. I highly recommend the University of New Haven Lyme Symposium. 

I am reporting what I heard. Any mistakes are mine and I apologize if I erroneously attribute ideas that were not stated as having been announced by these scientists. I did not stay until the end, and thus missed graduate students talking about research they are conducting with Dr. Eva Sapi. I also missed hearing Dr. Alan McDonald.

So, here it is--Dr. Burrascano's talk: 

The tests currently available for Lyme Disease are imperfect. If a person is very ill with Lyme Disease, their body can stop making antibodies to it, and tests won't show that this is the bacteria that is responsible for their decline. Better is a culture, which Advanced Labs is now doing.

[My note: these tests have not been approved yet by the U.S. FDA. On that note, though, the FDA has approved genetically modified foods, so perhaps we shouldn't use them as an indicator to determine the worth of a food or test.]

People with Lyme Disease see symptoms wax and wane, generally in a four-week pattern. The symptoms may vary over time. Bartonella, a tick-borne co-infection, involves tendons and ligaments (not just joints.) Babesia can cause air hunger and sweating.

Serologies cannot indicate whether treatment has cleared infection. People with supposedly "Post-Lyme Syndrome" have been found to still be Lyme positive. A spinal tap is only 9% effective in detecting Lyme.

False positives on the Western blot can be caused by the patient being positive for EBV and other viruses. 

A major paradox is that the sicker the patient, the fewer the antibodies.

Culturing Bb (Borrelia Burgdorferi) needs to be revived; this is the gold standard. It is 94% sensitive. [I gotta admit--when I see Bb, I think of music. OK, that joke fell flat.] With a Lyme culture, there are NO false positives. It's a direct test.

Probenecid boosts the power of amoxicillan, according to Dr. Burrascano.

Doxycycline inhibits symptoms at lower doses and doesn't kill the spirochetes; if the correct, higher dose isn't used, it is ineffective. With the right dose, the patient can see 67% improvement within 4-6 months.

Fine nerve fibers are affected with Lyme, resulting in terrible chronic pain. This damage cannot completely heal, but IVIG can help it. Lyme can result in a decreased number of nerve fibers in the skin.

High titers to EBV and HHV-6 may show, due to exposure and viruses that have, until now, remained dormant. These viruses can be activated if the immune system is down. Dr. Burrascano talked about the dilemma of treating these viruses with antivirals and concluded that the problem isn't the viruses but the weakened immune system. He said that there are exceptions, but he advises not treating the viruses because when the Lyme is treated, the immune system will strengthen.

[My son is currently on antivirals. I imagine he's one of the exceptions. I know that doctors disagree about this form of treatment. I'm OK with his doctors not agreeing on everything, since this is all so new.]

Tinidazole is a drug that has many side effects. It's very effective in breaking up cysts. Tinidazole does need to be taken for two weeks consistently, as part of pulse therapy. 

[I haven't yet heard about this drug being used for children.]

Why pulse therapy? It's better tolerated than daily therapy and there's no need for a PICC line.

From Dr. Sapi's lecture:

Lyme comes in several forms: spirochetes, round-bodies (granules and cysts,) L-forms (cell wall) and biofilms.

According to Dr. Sapi, biofilm is like a city. Its surface looks like the moon. It's "slime." Calcium alginate is a major component. Doxycycline is very effective for spirochetes, but not for round bodies. A great combination is doxycycline and tinidazole. Samento and Banderol work on the biofilms. 

With due apologies to Dr. Sapi (and to you, dear reader,) this is when my son urgently texted me. "Mommy, I never needed you so much," he wrote. Turns out the little guy had been stung by wasps on his knees but he's so used to Lyme joint pain that it didn't register at first. Of course, my husband took care of him. But I was distracted.

Ms. Akhila Poruri, one of Dr. Sapi's graduate students spoke next about biofilm. Biofilm is like dental plaque. Even forms of strep have biofilm! She showed amazing pictures that were magnified a zillion times. It's a whole new world that Dr. Sapi and her students are exploring. 

I give these doctors and scientists a great deal of credit. They have put themselves on the line for us. They have ventured into unchartered territories, at risk to themselves, taking stances against forces such as IDSA and the CDC. They will ultimately prevail. It was exciting to see all the young graduate students, in their dark suits, who will someday be our new trailblazers. 

I just hope they will find answers in time for my own child.

Comments

[Louise Stanley]

Thank you for posting your symposium notes. Our daughter didn't start using tindamax combinations until 1year into treatment. There was an increase of herxing with pulses, and we really needed the breaks inbetween to detox - continuous didn't work well for us.

We used tindamax for a total of 100 days and by the end of the combo pulses, she was at a new very good baseline.

It is so good to know that there are doctors willing to fight for us, despite the persecution they undergo.

FYI - Just posting my signature from the ACN forum:

DD11 - Born 2001. Loss of speech/fine motor 2 weeks after 15 month MMR.
2004 - Dx ADHD, sensory disorder (light, sound, touch), motor delay, hypotonia, oral apraxia.
2008 - insect bite (bruise-like rash) - motor/vocal tics, emotional lability, age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia. Waxed and waned with strep/viral infections.
2010 - Dx ADHD, motor tic disorder, high functioning aspergers, motor delay, probable PANDAS.
Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, nightly fever.
June 2011 - Igenex PCR positive bartonella, IND lyme. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, herbal, homeopathic treatment with LLMD.

April 2013 - Weaned from abx treatment. Continuing wth Buhner, Byron White, Zhang, detox protocols, Terry Wahls gf/cf/sf diet. Minimizing EMF exposure.