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Irish Lyme Conference - My Notes

Posted Jun 09 2012 12:00am
Hey People,

Firstly, thanks to everyone who has written comments on my blog over the last couple of weeks or so. It has been a bit crazy in Treya land so it may take some time until I can reply to all. I had that wedding to go to last week, and unfortunately my grandmother passed away the night before. I still went to the wedding as it was a close friend. But the funeral was the two days following. As I'm sure you can imagine this was a nightmare situation for someone with chronic fatigue: A wedding, then traveling across the country to the funeral the next day.

The funeral was of course very sad, but mainly a celebration of my grandmothers long life. She was one hundred and three years old!! Some of you may remember I put a picture up of her and a post for her hundred birthday.

Then after the funeral I had the Lyme Disease Conference... A full day at a conference was always a concern for me anyway. But the fact that I had all of this going on leading up to it was not good. I literally had to travel home the day before the conference, so there wasn't a lot of resting involved. I just stayed for three hours, and I got to see who I had intended anyway.

Now I shall cover the points I wrote down. The main person I wanted to see speak was Dr. Jemsek . A lot of what he talked about I personally already knew, so I just wrote down a few things. He said

  • The person before they get infected is a totally different person to the person they are after they are infected. This because the Lyme infects many aspects of the brain. He says in no other pathogen has he seen one that loves to live in the brain as much as Lyme. It favors the brain over everything else.
  • It especially loves to attack the 'Monkey Brain', which I think(could be wrong) is the bottom of the brain. And this is because Lyme loves white matter.
  • He said that when neurologists are testing people with Lyme for seizures that they won't find anything as the seizures Lyme infected people have come from deep within the brain where the usual test doesn't test for. 
  • He did however go on to say that it pretty much infects every part of the brain. As he spoke of the different areas and how it affects I was just nodding to each one... It made me realize just how badly I was/am infected. 
  • He feels that anyone that is treating Lyme should seriously know their Neurology. 
  • Examples of things affected that I can remember him mentioning were: fight or flight responses(I shiver with bad memories there), sudden rage, depression, behavior problems, sexual dysfunction, and lots of nerve damage.
  • He feels that a lot of the pains we experience in organs, etc are actually nerve related and lead back to the brain.
  • The most common damaged nerve he sees is the Trigeminal Nerve . If you have issues with this it is probably very damaged. I have a lot of issues with this on my right side of head/face.
  • My left side of the body is where a lot of my other nerve issues are. From what I gather this is Cranial nerves, and the particular one I noted as he explained the path was the Vagus Nerve which goes down the left side of neck, chest, heart, and swallowing. These are all issue I had bad last year, and have eased a bit now. Although it has been at me a bit the last few days. Hopefully it is not starting back, as it was the worst type of pain I have ever experienced!
  • He talked about the Peripheral Nervous System and the damage to it which can be quite bad, and how a lot of the issues related to that are due to toxicity. He says when your symptoms worsen it means there is a lot of toxicity. Treating Oxidative stress is VERY important. He said Glutathione is good for this.
  • He talked about the Hypothalamus/Pituitary and sexual dysfunction.
  • He said the long term memory problems start to recover before the short term.
  • He discussed the damage to the Autonomic Nervous System . And I think here he was talking about it causing some of the joint pain, and how pressure and ying or yang affects it and damp weather. In particular he made a reference to airplanes. Only recently I had bad knee pains on my flights...
  • He calls Chronic Lyme LBC: Lyme Borreliosis Complex
  • He didn't go into co-infections much, but he did say you won't get better if they are not properly treated too.
  • He worked for years with HIV, especially in the beginning. He said treating LBC is more challenging  than HIV.
  • He talked about the importance of Vit D.
  • Some patients have CCSVI , and this can really complicate matters in terms of treatment.
  • Finally he talked about what he called POEM: Pain, Support/family, Endocrine/Metabolic, Mood/psychiatric, Sleep. If any of these aren't being properly dealt with he can't get you better! The sleep is a big issue and you need to be getting deep delta.
  • Lyme being sexually transmitted was discussed as very possible. And also pregnancy infection(this I spoke to him about alone after). Even when a women is symptom free he treats her on a different cocktail of things. So yes there is always a chance of infecting the unborn child, which I know to be the case with Rickettsia as well.
  • Ok, that's it for now. I'm wrecked after that...

    I hope you are all ok...

    Speak soon,

    Treya : )

    P.S. A BIG shout out and thank you to Tick Talk Ireland for organizing the conference!!!!
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