Daffodil
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what makes you think anyone will do large scale studies with rituximab when the patent expires in 2015? there is no money to be made now. they will use some other drug and start from scratch
Gamma globulin
- Thread starter Rrrr
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deleder2k
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Why do you think a phase 3 study is launching in one month in Norway with 152 patients? It will be completed in 3 years from now.
heapsreal
iherb 10% discount code OPA989,
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I guess Norway has a different health system so trial is more likely, as you have said before if it gets people off disability it saves the govt money. But I think the health system in America are more profit driven so trials on meds that are coming off patent aren't an attractive option for the drug companies.
Sushi
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Moderator's Note: Ever wonder why threads need to stay on topic? Phoenix Rising is like an immense digital filing system for information and discussions of all the aspects of this disease.
In this thread, for example, we are starting to file Rituximab under Gamma Globulin!
Result? Confusion! Let our inner filing clerks prevail!
In this thread, for example, we are starting to file Rituximab under Gamma Globulin!
Result? Confusion! Let our inner filing clerks prevail!
deleder2k
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I am hopefully starting gamma globulin treatment with 10mg/ml Gammanorm weekly from August. Just got back lab results now:
IGA: 2.5
IGG 9.9
IGM 1.3
Male, age 24, M.E by Canadian criterias. Havent had a fever for 4 years
They didn't do a sub class test after all... Is there something i should consider before I start treatment? I will se my specialist in a week and provide her with the results.
IGA: 2.5
IGG 9.9
IGM 1.3
Male, age 24, M.E by Canadian criterias. Havent had a fever for 4 years
They didn't do a sub class test after all... Is there something i should consider before I start treatment? I will se my specialist in a week and provide her with the results.
What are the labs that are needed before embarking on GG therapy? my doc I don't think did specific Immunoglobulin testing - or perhaps he did and I don't know which ones they are, but he has recommended GG for a few months before IV anbx to kill Lyme and co infections. He says my immune system is not strong enough without it. I also have Cpn and keep getting lung/chest infections.
Daffodil
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hi deleder. I don't think subclass tests are necessary but If you have low subclasses, I think the IG could be paid for by gov't insurance
hi justy. my doctor did not ask for any specific testing before the IG...maybe just regular bloodwork would be enough?
hi justy. my doctor did not ask for any specific testing before the IG...maybe just regular bloodwork would be enough?
Daffodil
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an update..after 5 weeks of IG, I actually had a couple of better days and thought I had turned the corner.
I was supposed to start the cowden lyme protocol a little while ago but held off. I started it yesterday and now feel crappy again.
xo
I was supposed to start the cowden lyme protocol a little while ago but held off. I started it yesterday and now feel crappy again.
xo
deleder2k
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So alot havent changed for you since you started?
I don't think sub class test is necessary as long as a doctor states that i need it. Then i'll 90% return if I spend more than $250 on it.
I don't think sub class test is necessary as long as a doctor states that i need it. Then i'll 90% return if I spend more than $250 on it.
Daffodil
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hi deleder. i dont know if much has changed because of my now being on the Cowden herbs too. I have a little energy in the evenings but most of the day, i am dead. brain fog still bad.
a lot of people on the lyme boards claim that byron white formulas are better than cowden, but i will stick to what my doctor tells me to do.
xox
a lot of people on the lyme boards claim that byron white formulas are better than cowden, but i will stick to what my doctor tells me to do.
xox
I think we have the same doctor?
Interesting - re: antibodies
http://www.newsweek.com/20-year-old-ebola-treatment-could-save-kent-brantly-262552
http://www.newsweek.com/20-year-old-ebola-treatment-could-save-kent-brantly-262552
@justy, the first post of this thread (see page one of this whole thread) i listed the labs/tests my doctor said were necessary to get gamma globulin covered by my insurance. the test results needed to show 2 subclass deficiencies in order for my insurance to cover it. the same is true of medicare.
i do know others who did not have the two subclass deficiencies but who my doctor still thought would benefit from gamma globulin, and so they paid out of pocket, which was expensive.
but if you think that you only need 1/3rd of a gram per week, up to 1 gram per week, as some of our ME/CFS specialists have suggested (see the first post of this thread), then the price is not as high as it could be.
UPDATE from the person who started this thread
i am doing very very little gamma globulin at this point in time, as each time i inject even a bit (1/10th of a gram or even 1/20th of a gram), i seem to do worse. so i'm taking a break from gamma globulin for a few weeks, and instead just doing famvir and micro micro doses of gcmaf (1/20th of a cc) -- and a tiny tiny tiny bit of gamma globulin (2/10-1/10th of a gram) about once a week.
so my treatment so far has gone like this:
- it took a few months to finally get the good effects from self-administered shots of gamma globulin. i tried a few different brands (3 brands) and amounts, and settled on the brand called gamunex-C at about 2/10th of a gram every other day, more or less.
- when the good results finally started, i was able to go out more, and had more energy. it was wonderful!
- i had a family gathering in june and was able to really be present for it. so that was great. and very rare for me! yippee!
- unfortunately, right after my family gathering, i got pretty sick. bedridden or near bed for about a month.
- after the family gathering, every time i tried to do any gamma globulin shots or gcmaf injections i became weaker and sicker for about a week after each/any injection. since i did the injections whenever i felt i was able to, that translated into being very sick (and bedridden) pretty much all the time for 1 month.
- finally i just stopped the shots/injections or did them rarely to gave myself a break. i took this break after i read what someone here on this thread wrote (was it @susank?), that maybe our bodies are just having a tuff time with all the foreign substances put in them.
- then, about 1 month after the family gathering i switched from the generic version of famvir to the brand name version and BAM! suddenly i'm doing much much better. i had heard from others that the generic vs the brand name of famvir made a difference to them. and i can say that that is surely true for me, too.
- i may keep trying to do micro doses of gcmaf (1/20th of a cc) and gamma globulin (1/2 of a cc, which is 1/20th of a gram, i think ), but if i do, i'll just do it weekly.
i am doing very very little gamma globulin at this point in time, as each time i inject even a bit (1/10th of a gram or even 1/20th of a gram), i seem to do worse. so i'm taking a break from gamma globulin for a few weeks, and instead just doing famvir and micro micro doses of gcmaf (1/20th of a cc) -- and a tiny tiny tiny bit of gamma globulin (2/10-1/10th of a gram) about once a week.
so my treatment so far has gone like this:
- it took a few months to finally get the good effects from self-administered shots of gamma globulin. i tried a few different brands (3 brands) and amounts, and settled on the brand called gamunex-C at about 2/10th of a gram every other day, more or less.
- when the good results finally started, i was able to go out more, and had more energy. it was wonderful!
- i had a family gathering in june and was able to really be present for it. so that was great. and very rare for me! yippee!
- unfortunately, right after my family gathering, i got pretty sick. bedridden or near bed for about a month.
- after the family gathering, every time i tried to do any gamma globulin shots or gcmaf injections i became weaker and sicker for about a week after each/any injection. since i did the injections whenever i felt i was able to, that translated into being very sick (and bedridden) pretty much all the time for 1 month.
- finally i just stopped the shots/injections or did them rarely to gave myself a break. i took this break after i read what someone here on this thread wrote (was it @susank?), that maybe our bodies are just having a tuff time with all the foreign substances put in them.
- then, about 1 month after the family gathering i switched from the generic version of famvir to the brand name version and BAM! suddenly i'm doing much much better. i had heard from others that the generic vs the brand name of famvir made a difference to them. and i can say that that is surely true for me, too.
- i may keep trying to do micro doses of gcmaf (1/20th of a cc) and gamma globulin (1/2 of a cc, which is 1/20th of a gram, i think ), but if i do, i'll just do it weekly.
deleder2k
Senior Member
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Yes, I will. I will see the doctor on Tuesday. I probably won't start then, since I heard from one of the Rituximab hospitals that I probably will be invited for a chat to see if "the study is something for me".
Will keep you posted.
Will keep you posted.
R - I am not sure if my post about antibodies (Newsweek) is considered not discussing GG.
I posted it to show what antibodies can do against viruses.
What I don't know is the difference - if any - between "convalescent plasma" vs the antibodies in - say - Gamunex.
I posted it to show what antibodies can do against viruses.
What I don't know is the difference - if any - between "convalescent plasma" vs the antibodies in - say - Gamunex.
Wow - "Plantibodies"!
Just think of the possibilities.
http://www.reuters.com/article/2014/08/06/US-health-ebola-tobacco-idUSKBN0G607J20140806
http://en.wikipedia.org/wiki/Plantibody
Just think of the possibilities.
http://www.reuters.com/article/2014/08/06/US-health-ebola-tobacco-idUSKBN0G607J20140806
http://en.wikipedia.org/wiki/Plantibody