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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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SaveMe

Senior Member
Messages
421
Location
the city
Um yes Im that guy..great comments from Willow and others.

Really does boil down to politics.

As far as treatment, from my experience IGG is the best option for those who just come down with CFS, fresh IGG to clear the virus before it gets deep into the tissues and cause the more dramatic long term issues. The glutamine will help heal the gut as the infection is beleived to start there and go onto other areas from that point. The military stock piles IGG for this very reason, when the troops have viral exposures that can potentially be harmfull they use IGG. Unfortunately that has raised the cost of it ALOT.

You really want to do 6 months of both to make sure all is clear. Ampligen is great but at this point it should not be a number one option nor glutathione. Vitamin cocktails always nice and Xyrem is very effective for sleep, but very addictive so be careful. As for the CDC, I think everyone covered that topic in great detail and offered links :)

IMMUNE GLOBULIN (HUMAN) (IGG) IV WARNINGS
This medication may cause serious (rarely fatal) kidney problems.
This medication may cause serious problems from blood clots (e.g., pulmonary embolism, stroke, heart attack)
this product may contain substances that could cause infections because it is made from human blood. HIV
may cause a serious inflammation of the brain (aseptic meningitis syndrome) several hours to 2 days after your treatment.
Lung problems may rarely occur 1 to 6 hours after your treatment. You will be monitored closely for any lung problems after your treatment.
pulmonary edema from fluid overload, due to the high colloid oncotic pressure of IVIG
allergic/anaphylactic reactions; for example, anaphylactic shock, especially in IgA deficient patients, who by definition can still produce IgG antibodies (IgA deficient patients are more likely to produce IgG against the IVIG administration than normal patients).
damage such as hepatitis caused directly by antibodies contained in the pooled IVIG.
acute renal failure[9]
venous thrombosis
aseptic meningitis

I appreciate the advice Michael, but I am only 20 years old and want to live to see 90-100. any idea what triggered yours?
 

TheMoonIsBlue

Senior Member
Messages
442
As far as Glutamine goes, which could help your GI symptoms, you can buy that right online. "GlutImmune" by Well Wisdom is a brand I've used, but there are lots of brands. There is a product called "Glutagenics" by Metagenics which has positive reviews by people, Metagenics is a great company but their supplements are rather expensive. You can google them to find more info.
 

SaveMe

Senior Member
Messages
421
Location
the city
As far as Glutamine goes, which could help your GI symptoms, you can buy that right online. "GlutImmune" by Well Wisdom is a brand I've used, but there are lots of brands. There is a product called "Glutagenics" by Metagenics which has positive reviews by people, Metagenics is a great company but their supplements are rather expensive. You can google them to find more info.

do you think any glutamine might do the trick ? http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=OP-2024

dank you
 

TheMoonIsBlue

Senior Member
Messages
442
Probably, just make sure to buy from a reputable company. I know a lot of people use VitaminShoppe. Iherb dot com is also a great vitamin site which sells lots of brands. And people write reviews of the products on there, so you can tell which products are working well for most people, and which ones aren't, which is helpful.
 

Michael Dessin

Senior Member
Messages
608
Location
Ohio
Yeah and do you know the adverse effects of Tylenol? Just ask your physician about the IGG, CFS physician that is.

What triggered mine?... hmm genetics than the virus
 

SaveMe

Senior Member
Messages
421
Location
the city
Tylenol is dangerous, and especially overdosing on it. I agree. Thank you for suggesting IGG, you are the first to do so and I believe knowledge is power. With those neg effects I mentioned it does also state "This medication is used to strengthen the body's natural defense system (immune system) to lower the risk of infection in persons with a weakened immune system" so you are right on the money with that one. I will see what Enlander or another cfs specialist has to say about it. benefits might outweigh the risks?. thanks



http://www.youtube.com/watch?v=iYrg-jpDQxA
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
did they ever find the cause of chest pain?

No SaveMe, they never really found the cause. I had (another) Dobutomine Stress Echo about 3 weeks ago, then saw the Cardiologist about 10 days ago. The consultation proved very unsatisfactory & I felt I wasn't being assessed properly, so complained to my GP & he has referred me back to my old Cardiologist I saw in early 2007 (who diagnosed SVT at that time). My appmnt with him is not until end April.

I'm wondering if my BP meds have stopped working as I am getting intermittent high spikes in my BP. I have a good BP machine.

As I get dizzy when I get up suddenly & have started getthing a few low BP readings, I am wondering if it's sort of like POTS.
 

sleepy237

Senior Member
Messages
246
Location
Hell
SaveMe for your own protection online I would advise not giving out personal information to strangers. be safe.