Still waiting
Posted by Dave on Feb 4, 2012 in Dave's Blog | 1 comment
On the 10th of January Chris and I eagerly awaited the results from the new Lyme test by Advanced Laboratory Services. He gave blood for it October 4th. It had been three months. Disappointment—again. An email with Dr. Burrascano, who was one of those who spearheaded the development of this test revealed the following: After six days his sample was not conclusive. That is when 90% of the samples would have tested positive if they had been. His sample was put into two other cultures for two more months. Based on initial research the other 10% of positive samples would come back positive after that time. Maybe the delay is due to the fact that the company is using a batch of samples, including Chris’ for a kind of test run to get the kinks out of the process. We really can’t complain since we got the 500 dollar test for free. I emailed Dr. Burrascano that if Chris’ test came back negative a lot of doctors were going to egg on their face. So was I, having written a book claiming not only that he had it but that it played a role in his bipolar syndrome. Still, while waiting to know if the elephant that I had always suspected was in the room was actually there, other issues needed tending to.
The test for heavy metals showed moderately high levels of mercury, lead and tungsten. Dr Z recommended 2 DMSA pills a day twice a week with minerals in between to resupply those chelated out. I asked about vitamin C and chlorella and he said these were too slow. I ask if he would have any problem with EMPowerplus for the minerals and he said he didn’t so we will now start 3 EMPowerplus twice a day on the days he doesn’t take the DMSA.
We discussed the Radio Allergo Sorbent Test (RAST) test results given some time ago. Dr Z says he doesn’t have much confidence in the results even though Chris got exceptionally high levels of IgG antibodies to gluten and casein. I asked him about dermorphin. He said it is an opioid found in autistic children related to casein and gluten. I told him that Chris tested high for dermorphin antibodies on the RAST and that some of his early episodes featured autistic like symptoms such as rocking. I also mentioned that Chris was an avid milk drinker. Chris said the rocking was just to relax. Dr Z said that is why autistic children do it too. So he recommended that Chris take DPPIV enzymes with his meals. (This is discussed in more detail in Beyond Mental Illness)
I recall Dr Cade recommending that Chris take DPPIV enzymes some years ago but at that time we were focusing on other issues and I didn’t fully understand the need for it. I told Dr Z that when those with IgG antibodies do drink milk, they increase their chances for psychosis 18%. Dr Z says he prefers dietary challenges rather than food sensitivity tests.
One thing that I found very helpful is drinking organic milk. I’m have much less sensitivity to the organic brand. I won’t even start on what about the organisms in the food supply or blood for that matter…However, I do have a lot of vets coming to me for help with the Lyme in the animal population…Vets sometimes do a better job because they have more license to do things for Lyme with the pets than the doctors do. Also, I have found that knowing your blood type as per the senior Dr. D’Adamo’s blood type and diet books is crucial to treating these bacterial infections…For example, if someone is an O type, then they will be much more likely to be cassein and gluten sensitive than other bloodtypes and as they get sicker they get more sensitized. It all boils down to knowing your client’s body and treating it as unique as opposed to a one-size fits all protocol.
I am highly opposed to pulling heavy metals while one is being treated for Lyme as well as for autism. The reason is that the bacteria cause lesions that are epileptiform and pulling the metals which are so neurotoxic on a lesioned brain…that’s like putting the wrong thing on a sunburn, thanks for the good intentions but ouch ouch ouch!
When someone has episodes in stages two, three and four, titrating the rate you go through treatments so that you don’t kindle the episodes upwards is really important. This is the one part of the science that is not being addressed,in my opinion, very well at all.
The more episodes you have the more episodes you have.
So when you treat the system, better to go a little easy on the system and not set the stage for igniting the episodes. I know you know this now after all you’ve been through, but I sense that you are hesitant to point this out to the doctors who may be treating your son and having them address this part of the double-edged sword of working with Lyme and Bartonella. It can be done, but sometimes patient advocates need to bring this up to the treating doctors. Good intentions are not enough, a wokring knowledge is often had by the surrounding family members and that experience is invaluable and I validate those experiences for clients as opposed to tuning them out, which still is often the case when success with one client gets superimposed onto others who it might not be good for at all. With epileptiform activity you have no wiggle room. That is why I rely heavily on allergy testing for all things going into the system of a Lyme or bartonella patient. Dr. Cameron in Mt. Kisco tests all the antibiotics with an allergist. The same thing should be done by the psychiatrist with the meds proscribed. Make sure they are in synch with the patient. Some people use the Indigo and other electrodermal or muscle testing. I have my clients muscle test everything they come in contact with, their food plates before they eat, all their supplements, and even situation they might be considering. This can be learned now on Youtube as well. Might as well learn how to work with the vehicle you have right? Cheers! Helena