Discussion in 'Immunological' started by cb2, Feb 3, 2016.
do this immune markers look "normal" for a cfs person? most things look pretty low to me.
Probably for some patients, seems like a trend of all low. But perhaps people with more Viral symptoms would have reading on the higher end?
There aren't any known consistent abnormalities of IgG levels in ME patients, but subclass 1 and 3 deficiencies aren't uncommon.
Low subset 1 and 3 and low total immunoglobulin indicates CVIG. I think, but can't remember if low IgA is used for that diagnosis.
I did once have a diagnosis of CVID is that common variable immune deficiency is that what you are mentioning @minkeygirl ?
I wonder if @SOC has any thoughts ? thanks
@cb2 I think there might be some old threads where @Ema talks about this stuff.
Yes on the CVID. That is one of the diagnosis that will get you immunoglobulin. I saw an "immunologist" (allergist) who would Rx it for me if I had a psych consult first. I refused. I'm seeing a new clinical immunologist in April.
But as far as I know for CVID you have to have low subset 1 and 3 and below normal total immunoglobulin, which you don't.
@minkeygirl i am glad you have a new immunologist lined up.. what a jerk to have the dr tell you too see a shrink for IVIGG that is so silly!
when i had a pneumavax challenge with the immunologist at stanford in 2012 they diagnosed me with CVID because my body didn't build a therapeutic response and offered to do an IV IGG trial..but i wasn't ready then.
still on the 1x 250mg famvir a day..thinking of increasing in a few days.
My hmo had no good immunologists. The first one just wanted to give me more vaccines. The 2nd guy a dumbass. Wanted to make sure my symptoms were physiological. Like I could think myself into an immune deficiency. Neither had a clue about ME. That's why I switched to original medicare. So I could see a doc with a brain.
The guy I'm going to see was treating ME/cfs 20 years ago with interferon injections. And this guy is not some crazy rebel. He's the chair of the Allergy/immunology department at a world class teaching hospital. He's not afraid to think outside the box, which is what we need in doctors.
No rush on the Famvir. When you're ready. But that is not medical advice. Just my experience.
i did want to use a curse word when i was describing the "other dr' but didnt want to offend anyone..so i am glad you were liberal with your wording! LOL!
i am glad you are going to see a good dr.. he sounds interesting and cool! would like to hear how it goes.
i was on interferon therapy in 1997 but not for cfs.. for hep c. i wonder how the dr treats as far as dosage? it wasn't an easy drug.. i took it sub q 3 x a week for a year. it worked on the hep c , lucky for me but i guess it didnt work so well for others. but after the interefron my energy took a dive in my early 3os that is when the cfs really set in for me. I would love to hear what this dr does.. you aren't in the bay area by chance are you ?
it is good he thinks outside the box and is open minded! glad you found him.
I was being kind calling him a dumb ass. He does research on asthma. Even if he did give me tbe IVIG, he would have no idea how to cater it to my ME. I shudder to think how he could have messed me up with his ignorance about ME.
I don't know if the new guy uses interferon any more. Back the there wasn't much offered. My then doc just shoved supplements down my throat. I don't even remember what.
I'm in So Cal. The guy is with UCI. I know he knows Montoya and has no problem rx'ing immunoglobulin. Finally someone who will get it. I'm hoping to get a bunch more labs run for co-infections, enteroviruses etc. I'm also going to talk to him about ARV's.
I do have an appointment with Dr Ty Vincent so I don't want to start anything too crazy while I start LDI.
I'll be cured!
that sounds like a great game plan! yay! are you gonna work with Dr. Vincent before the immunologist and try LDI first? Lyme? ARV? anti reto virius?
my energy is running low.sorry for short msg.
glad you didnt work with that da asthma dr.
@cb2 Yes I see Dr. Vincent first. He'll decide which way to go. As far as I know I don't have Lyme but I am positive IgM for mycoplasma and HHV6. I have pictures of me hugging deer when I was a kid so that's why I'm hoping the immuno will run labs for co-infections and whatever else he deems necessary. Then I can tell Dr. Vincent if something significant changes. I guess he can make adjustments. I'm not sure how he works with that.
I'll discuss all treatments with the immuno and go from there. Anything that'll get me off the sofa.
@minkeygirl I am excited that you are going to work with Dr. Vincent .. and the immunologist sounds great too!
i take alot of caffine.. i like KPAX energy vitamins.. they can be a bit pricey but they will give discounts for folks on disability and sometimes they have really good sales. i usually wait for the sale and then stock up. I know it is only a bandaid.
i started working with an acupunturist that says he has treated lots of folks with "the old flu" he calls it.. says it takes about a year and he makes tea for us. we'll see how that goes.
dont know if you can take caffeine?
@cb2 I can't tolerate caffeine at all. I don't do well on anything that stimulates although about 10 years ago I loved focalin. Crashing and burning is not fun. Lol
I looked into kpax awhile ago. i think i ruled it out because I don't like to take sups that have a bunch of ingredients in them. I'm sensitive to a lot if things and I think there were some things in it I know I can't take. And the $$$.
I tried acupuncture a few years ago. Yikes! Not good for me at all. Maybe tea and needles will cure you!
Right now LDN is helping a lot. I'll keep my fingers crossed with that and hopefully with other things going on I can feel a little better.
Glad all this stuff youre doing is working for you. I'm good with what I'm doing.
@minkeygirl I am too skeptical.. dont know if needles and tea with cure me..it would be nice. I have to work to not do too many things at once. I take LDN too.. i do believe that has helped.
interesting how we all have to find our own way and how things are so different. In a way i wish i were sensitive to more things, it would save me alot of money trying things and wasting money! and even with caffeine after a while it doesn't work. My body would probably be grateful if i gave it a caffeine break!
i am meeting with a holistic lyme dr on monday- (it was a spontaneous decision) and i am kinda regretting it..as they have a 7 day cancellation policy- i could almost pay or Dr Vincent for what i am going to be paying this guy. and it isn't in my budget. live and learn i hope but i dont seem to be learning yet. and money easily goes away.
i know of someone else that just started with Dr. V and is doing the LDA going on her second dose.
i overdid it yesterday- today is a fog. i really need to work on pacing.
are you good at pacing?
@cb2 I have drawers and cabinets full of crap I tried and can't take. A well friend asked my why I keep them. lol Well, cuz I paid, and I always try things later to see if something has changed. Or I pass them on to someone else who might want to try them. I every once in a while you hit something that works.
Dr. Vincent does LDI which I believe is different than LDA. Sergio just posted something about it on a thread he started and there is another thread about it too. I don't worry too much about other people's bad luck or success with some protocol. You just never know. I had no benefit from LDN when I tried it a year ago. Now it's helping, it's all in the timing.
Good luck Monday
@minkeygirl LDA/ LDI brainfog.. sorry. i thought they were the same but i am in a fog.. i walked alot yesterday and did a little workout at the gym.. today is a cloud.
how can you tell the LDN is working?
thanks for the luck wishes on Monday-.
i have a couple banker boxes full of supplements too. but my goal for the new year is to stop spending so much on them..
i will try to get to that post by Sergio..thank you for letting me know!.
@cb2 I had an immediate benefit from LDN when I figured out the correct time to take it. It was huge. Energy, mental clarity, pain much less. I felt almost human.
The last 2 days have not been so good. I'm hoping it is PEM. I'm also going to lower my dose. I know some people that did better on less and raising it seems to start my problems. I just have to do trial and error to figure it out.
@minkeygirl have you been doing alot to get the PEM? could it be "growing pains" ? or just a couple rough days? or do you seem to think it is related to the increase in LDN? wondering if when you felt better you did more hence the PEM rather than the increase in LDN? dont know if any of this makes sense. but you know what you need to do.
sorry you have had a rough couple days and hope it gets better soon.
@cb2. I appreciate your interest but please stop.
Sometimes feeling crap is just feeling crap.
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