Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

[minkeygirl]

There is paperwork for him you have to fill out. I have my notes to get together. Labs that I want to send to him . All that takes a considerable amount of mental effort which is exhausting. I'm not just going to open skype and say duh.

 

[littlebird6180]

That's what I figured. I got the paperwork but are we supposed to/allowed to send records over ahead of time? That gives me time to get a lot of things assembled.

 

[minkeygirl]

They want stuff 2-3 days before the Skype appointment. I don't know if sending it really early would help. From what I gather he doesn't look at labs before the appointment. And could get lost.

 

[Sushi]

what are you going to do to prepare?

I prepared a timeline of all the things that might have led to ME/CFS, by date. He is also interested in what was going on in your life at the time of these "incidents--pathogens, toxic exposure, etc." That worked well.

That's what I figured. I got the paperwork but are we supposed to/allowed to send records over ahead of time? That gives me time to get a lot of things assembled.

I didn't sent any records cause I wasn't asked to. He doesn't "pore over your medical records" before an appointment, he just wants to know, from you, what things you have tested positive for, your past and current symptoms, exposures and illnesses, and how you responded to different treatments you tried, and anything else you can remember. I spent about an month with an open document adding things as I remembered them. That worked well in the appointment and he asked lots of questions.

The only test I "showed" him was a current cortisol curve, which I held up to the camera.

 

[minkeygirl]

@Sushi Thanks so much for this info. No one has asked me in a long time how I got sick. It's going to be a real challenge to remember stuff going back that far besides the initial thing that I know set me off.

I'm going to get working on it now.

 

[Sushi]

It's going to be a real challenge to remember stuff going back that far besides the initial thing that I know set me off.

That's why I just kept a document going, adding things when I remembered them, and then putting them in a time line when I was finished. Symptoms are very important to--and how they have changed. He wants to hear it all as he is looking for "keys" to try to get your immune system back on track.

 

[minkeygirl]

@Sushi I don't have that program. I am doing a draft in gmail. I'll need time to think about this. So much is gone from my brain. it's like something that happened even a few years ago is "gone".

 

[Sushi]

@Sushi I don't have that program.

I just used Microsoft Word. Do you have any document program?

 

[minkeygirl]

Don't have any document program. Never needed one all these years. I just start a draft. Easy to access from any device.

Boy I don't remember dates of things that far back.

 

[minkeygirl]

@Rrrr do I remember right that you were getting LDI? And for mycoplasma?

What's the status with that?

Tag me please.

 

[minkeygirl]

This is why we cannot bill medicare for Skype appointments with Dr. Vincent or most other docs. Basically, the only way it's covered is if the patient is living in an isolated area and has no other choice for medical care, and even then, has to be in a docs office during the consult.

IMO Medicare is totally out of touch with what it means to be housebound. Not only with this but with being able to get home care fo non-skilled services like blood draws. I'd like to see that change, which will be when pigs fly.

https://www.cms.gov/Outreach-and-Ed...NProducts/downloads/TelehealthSrvcsfctsht.pdf

 

[Kimsie]

In the context of ME this sounds like nonsense. Low dose antigen therapy has been used for allergies but I am not sure how effective it has proved to be. It is completely irrelevant to rheumatoid arthritis so any physician who claims it works for that sounds like someone to be avoided.

I know this is anecdotal evidence, but I have a 3 year old granddaughter who has severe corn allergy, plus some other allergies. She has been getting LDI treatments from Dr. Vincent for about 7 months and it has made a huge difference for her and now she hardly has any eczema and has increased the number of foods she can eat.

I don't see how you can be so sure that low dose antigen therapy is irrelevant to rheumatoid arthritis. Have all possible low dose antigen therapies been tried on people with rheumatoid arthritis and found to be useless?

 

[Kimsie]

Thanks for the info... Whatever it is my Doctor is very hopeful about this treatment. I've been watching some videos on u tube and its very interesting, For some time I did auto urine I,M.plus ozone which some people might mok, but urine has antigens of every thing wrong with you. its very similar to blood plasma.
I just wonder how this differs.besides extreme low dose. I need to learn more about this.

How did that go? I wouldn't think it would work IM, I would think it would have to be intracutaneous or sublingual.

 

[minkeygirl]

For those who want to record your Skype appointment I have figured out how to do it with a Macbook. If you have a PC you might be able to adapt this. This will only record the audio of both parties. To record the entire thing you have to get a 3rd party app. This puts it in iTunes.

NOTE: Each state has different consent laws for recording. I live in a two party state which means both of us have to consent so I have to ask Dr. Vincent if it is ok. Make sure you know what the laws in your state are. I'm not recording it on my phone because I don't have enough room (I don't think).

Open QuickTime Player>File>New Audio Recording. On the right side of the window that opens there is a little drop down triangle. That is where you set up recording options. You may have to go to System preferences to get this set up. Then press the red record button.

This will put in in iTunes. From iTunes you can email it, export it to Evernote. Leave it there. I like having it in another app (like evernote) just in case something happens to iTunes. Google how to export it. That's what I did.

This is the window that drops down when you open quick time player.

 

[Sushi]

This quote from an interview may give a clue as to why LDI works:
HARVARD NEUROSCIENTIST DR. MICHAEL VAN ELZAKKER: CHRONIC FATIGUE VAGUS NERVE LINK

These innate immune cells have a lot of cross-talk and it can become a snowball and that’s a new classification of disease that I’ve alluded to is autoinflammatory and that’s not the same thing as autoimmune, which is when your body attacks its own tissue. Autoinflammatory is when there’s an ongoing inflammatory process in the absence of evidence for a pathogen that would be causing it.

 

[minkeygirl]

@Sushi. Are you going to post that link elsewhere? I think I've read about vagus nerve Inflammation before.

Very interesting.

 

[Sushi]

Are you going to post that link elsewhere? I think I've read about vagus nerve Inflammation before.

This is the same researcher, though it is an article: http://forums.phoenixrising.me/inde...on-psychoneuroimmunological-hypothesis.23909/

 

[Gingergrrl]

@Sushi I just read the article and realized that I had read it once before when a friend sent it to me but forgot! Thank you for posting it. It was confusing though when he spoke about finding the right anti-viral to target the viruses b/c I went this route for close to a year and it did not help me at all. I wonder if inflammation of the vagus nerve persists long after the viruses are gone and we need other mechanisms to treat it. I need to read it a third time!

 

[Sushi]

wonder if inflammation of the vagus nerve persists long after the viruses are gone and we need other mechanisms to treat it.

That is why I posted it on this thread--in relation to LDI.

Autoinflammatory is when there’s an ongoing inflammatory process in the absence of evidence for a pathogen that would be causing it.

 

[minkeygirl]

We'll be cured!