Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

[minkeygirl]

@Mary Have you looked into this more? One of the docs on the link you provided is very close to me. She has to be cheaper than Vincent. How much his he? No one says just that he is expensive.

Thanks

 

[Mary]

Hi @minkeygirl - I think I talked to the doctor who is in your area (Jessica Tran) - her charges were the most reasonable, I think it was $75 per injection plus the doctor visit (she also sounded pretty young, but that could be my age showing!) - this was several months ago.

Vincent charges $500 for the initial phone appointment for one hour, and $125 for each 15 minutes over an hour. He also charges a shipping and handling fee of $75 - $100 for each dilution - this is all from his website. It doesn't say what the dilution itself costs. And if you have to call a nurse with a question, there's a $25 charge for each 15 minutes . He seems to charge an armload for every possible thing. Here's his website: http://www.mat-suim.com/index.cfm/fuseaction/site.content/type/124719/custom/1.cfm, and if you click on "Skype Demographics.doc", you'll see all these fees listed.

I did talk to a couple of other doctors in California (one in L.A. and one in Ojai) and they were all expensive but not as bad as Vincent, I forget how much they were - and Dr. Tran was the most reasonable. I even considered going down there but decided it was too far.

 

[minkeygirl]

@Mary, it was Tran who it turns out is also affiliated with a hyperbaric group my NP is in. I'll ask my NP about her. I found another in Irvine, Dr Mae Kinaly, also in Irvine. She's from Vincent's site.

http://www.drkinaly.com

I knew Vincent was $500 but thought nurse was free for routine and stuff was just $100. I didn't search too much on his site. I probably would have passed out.


Att jacked my bill up. Have to call loyalty department tomorrow. Insane. And my phone is still acting up. WTH?

 

[Mary]

@minkeygirl - interesting - keep me posted if you try it. That's great that your NP should know Dr. Tran and you can get more info. It's scary to see someone new and spend a lot of money, and not really know if they know what they're doing. That's good you have another doctor down there too who does the injections.

Re ATT - that's crazy they jacked up your bill - like an insurance company that raises your rates when you file a claim! Call your friendly ATT rep who fixed your line the first time, maybe he'll help you again? (have you looked into the California lifeline program? I used to qualify for that but not any more)

I'm now seeing the partner of my chiro who does other things than my regular chiro, he's doing something supposed to affect the vagus nerve, it leaves me kind of spacey but he seems to know what he's doing It only costs me $8 a visit, he knows a lot, may have more testing done - WTH! What else do we have to spend money on?

 

[minkeygirl]

That's espensive. I'll see about the others. Living large in wasilla.

I have lifeline. This is base rate. It was $9. Plus $8 for repair which I'll cancel. So for line and caller ID it's $18. Still outrageous. I got the number for the loyalty dept. they also have special rates for disabled. I was just pissed so called

Cool about vagus nerve stuff. Whatever we can do.

Spend my money on crap i don't need. I don't need a landline.

 

[Gingergrrl]

I did talk to a couple of other doctors in California (one in L.A. and one in Ojai) and they were all expensive but not as bad as Vincent, I forget how much they were - and Dr. Tran was the most reasonable. I even considered going down there but decided it was too far.

@Mary LDI has been recommended for me as well by friends so if you do end up trying it with one of the doctors in the greater LA, OC, or SB area, I am curious to hear what you think? My fear (and I have not researched it enough to have solid, objective evidence) is that I do not know how it would be with severe MCAS. I am doing another treatment now and don't want to introduce too many new variables at the same time, either.

 

[Mary]

Hi @Gingergrrl - I would be very careful too, doing one thing at a time. It's too hard to know what's doing what with more than one variable.

I don't have any plans to try LDI in the near future - I think I just decided it was going to cost too much for me right now, and also I talked to one doctor (I forget which one) and he really didn't seem to know about CFS. From what I understand, the LDI uses antigens re certain bacteria and no one knows what's involved with CFS, so I don't know how they would know what particular antigen to use, if that makes sense. I'm still a bit unclear on it, but I didn't want to spend a lot of money to be a guinea pig.

I hope your current MCAS treatment helps!

 

[Sushi]

Vincent charges $500 for the initial phone appointment for one hour, and $125 for each 15 minutes over an hour.

I paid $500 for my 1 hour and 15 min appointment.

He also charges a shipping and handling fee of $75 - $100 for each dilution - this is all from his website. It doesn't say what the dilution itself costs.

He charges only $100 for enough antigens to least you a couple of months--that includes shipping and handling.

And if you have to call a nurse with a question, there's a $25 charge for each 15 minutes .

There is no charge to call a nurse with a question, or to report on your responses--they request you to email these. There is a charge for unsolicitated emails--particularly if they require complex answers, but for routine care, no extra charge. I know this not from his website but from being his patient and knowing what I have paid. They had to start charging for emails because they were getting an average of 125 per day and couldn't handle them with the small staff they have.

 

[kungfudao]

All I know is that my doc is very exited about L.D. antigen therapy.It acts an adapdogen,and stops the inflammatory response.I am diagnosed with Rheumatoid and Schoriatic Arthritis. He has me on a kind of list of old friends or very difficult patients.He called me a 2nd time. We talked about Dapto, Ceftaroline, and Doxy. We agreed that I would continue 3 months, stop antibiotics and start the antigen therapy .He might get me shots as a trial, We didn't talk about $. He just said he had gone through the training and wanted me to come down for the injections. He gave me the impression that I could very possibly be cured of Babesia and Lyme.
I am 6 weeks into the Dapto, Ceftaroline and Doxy. I feel good when I wake up in the morn,which is not the norm for me.
When I do the meds I.V. I get Bed Bound, with symptoms all over the place. I have had great improvements on pain and flexibility.
The hard part with the L.D. antigen treatment is getting the right dose. I thing I'm going the right rout, by knocking the crapers out of the Lyme, and following up with immune modulation. Time will tell? Best regards

 

[Thinktank]

I feel antibiotics are not doing much for my chronic lyme anymore so i'm pondering if i should try LDI.
One thing that i absolutely want to try is plasmapheresis to bring down the inflammatory molecules, low-grade chronic inflammation is my worst problem after all.

Does anyone know if plasmapheresis goes well in combination with LDI?

Are there any doctors or specialized clinics in Europe that offer LDI treatment?

 

[Mary]

I paid $500 for my 1 hour and 15 min appointment.
He charges only $100 for enough antigens to least you a couple of months--that includes shipping and handling.
There is no charge to call a nurse with a question, or to report on your responses--they request you to email these. There is a charge for unsolicitated emails--particularly if they require complex answers, but for routine care, no extra charge. I know this not from his website but from being his patient and knowing what I have paid. They had to start charging for emails because they were getting an average of 125 per day and couldn't handle them with the small staff they have.

@Sushi - I'm really glad to hear all this! All that information I posted was taken directly from his website, so it would be good if they cleaned it up, especially the bit about the exorbitant shipping and handling charge. $100 for a couple months supply of antigens including S & H seems more than reasonable, but that's not what the website says. And again, the bit about charging $25 to talk to a nurse is on the website. I am really glad you clarified things!

BTW - is LDI therapy helping you? Can you tell us how you are responding?

and @minkeygirl, am tagging you so you can see this new info -- he might be affordable after all --

 

[minkeygirl]

@Mary @Sushi thanks

 

[minkeygirl]

I just spoke to Katy at Dr Vincent's office. The "shipping and handling" is $75-100 depending on how much you get but the antigen itself is free. I told her it was confusing and that I was going to explain the confusion here. I did not ask about the other costs

 

[minkeygirl]

Question about injections:

What syringes or does it come dosed? Is there a video to show how to do it? I gave myself allergy shots years ago with an insulin syringe but I just stuck the needle straight in. I'd line it up, then look away and jam it in my hip.

I'm not sure how to do it at an angle which, being the big baby I am, looks scary. I know it's not but I'm not good at injections no matter who is doing them.

 

[Sushi]

BTW - is LDI therapy helping you? Can you tell us how you are responding?

My first shipment of LDI is due to arrive in a couple of days.

What syringes or does it come dosed? Is there a video to show how to do it? I gave myself allergy shots years ago with an insulin syringe but I just stuck the needle straight in. I'd line it up, then look away and jam it in my hip.

There are two routes of delivery--some doctors choose one, some the other. They are 1) sublingual, or 2) intradermal injections. Since intradermal injections (not sub-cutaneous) are hard to do and are painful, Dr. Vincent is using sub-lingual. He has used both and has not found a difference in efficacy.

How to do it? Squirt it under the tongue and hold for 30 seconds.

 

[minkeygirl]

I've been reading and I'm wondering how Dr. V knows what antigens to give? History, labs, symptoms?

 

[Mary]

@Sushi - thanks for all the info! Please keep us posted how you do --

 

[Thinktank]

@Sushi, are you going to keep a log? I'm very interested in your progress with LDI.

 

[Sushi]

@Sushi, are you going to keep a log? I'm very interested in your progress with LDI.

Yes, I'll keep a log but I may or may not post about it.

 

[Rrrr]

i just had my first (skype) appt with Dr. Ty Vincent, and i liked him.

fyi, i do not think the charges are out of control. most lyme literate doctors who do integrative medicine in the northeast of the USA charge about $400-500 for the first appt, if they don't take insurance. and that is the case with Dr. Vincent. it cost me $500 for 1 hr (and 22 minutes) of his time.

(I know a patient who went to a well-known ME and lyme doc in calif, and she paid $900 for the first appt!)

and the antigen doses (which are in syringes, but you take them not as shots but as sublingual liquid) will be shipped for $100. that is for the antigen doses and the shipping/handling. they charge is technically for the shipping/handling. but what they are sending will last me a few months for sure. you can only take a (sublingual) dose once every other week or so, if you have no reaction. if you have a bad reaction, you must wait 7 wks for your immune system to settle back down (my words, not dr vincent's) before you do another weaker dose.

if you have a good reaction, i don't recall how long you wait until your next dose.

you start with a low strength dose and increase the strength if you don't respond to the lower strength/dose. it takes time. but if you get the exact right strength for your particular body, then you feel better, and that is your "right" strength/dose.

i am starting with EBV and mycoplasma, not with lyme, antigens. he came to his conclusion after i told him my history.

also, re: $, after the first appt, you do not pay anything for the weekly email check in with the nurse. from what i understand, if you have questions not related to you doing better or worse, that is when they ask for $25-50 for an email reply.

i'm excited. i hope this works for me. and for others who are doing it.