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Thank you for your wise advice!

Years of chronically low total IgG, IgG1, low or low normal WBC's and low NK cell activity...

Hi, I have had chronic bacterial and viral infections for decades...diagnosed with ME/ CFS 18 years ago and a Primary Immune Defeciency three years ago and placed on IVIG...has anyone been referred ( or referred themselves) for formal genetic testing? I am trying to get an appointment with the...

Hello, I am following this with great interest as I have an appointment with Dr. Systrom in June (long wait list). I have a diagnosis, in addition to ME/CFS of 18 years, of CVID and dysautonomia. I receive IVIG, every 21 days, for the CVID and take Mestinon 60mg three times per day for the...

Hello....May I inquire if any dye was injected while you had the radial and pulmonary artery catheter placed? Thanks!

Hi....please see the link below for information on how it works... https://www.ampcoil.com/overview/

You may want to consider putting a hold on your alpha lipoic acid. My Naturopath told me to discontinue mine as I was experiencing much of what you describe above. She told me it is a potent antioxidant and chelator of mercury and if you are a poor detoxifier ( I am homozygous c677t) you are...

Most days of the week I can be upright for a few hours per day...spaced out through out the day. Some days, like this past weekend, I can be up for bathroom and quick meal. I have POTS secondary to chronic infections of every nature...EBV, HHV6, mycoplasma, Lyme and on and on... The IVIG has...

Hi! I ended up biting the bullet and purchasing the Ampcoil. I am so desperate for any gains and the research about it made sense to me. I have had it for two months and I am proceeding slowly and on "low". The Company recommends that for Folks with immune dysfunction (on IVIG ) and...

I have received IVIG for 2.5 years for low Total IgG and IgG1. After insurance, I am responsible for up to the catastrophic limit each year which is $5,000 out of pocket. It is a heck of a lot of money but without IVIG I would be bedridden versus primarily homebound.

This is very interesting to know as I am on meds for hypothyroidism...thank you for that info.

I am getting IVIG (Octagam) every 28 days for low Total IgG and IgG1 for chronic active infections. It is not an autoimmune dose. The IVIG helps manage some, but not all, infections and surely comes with side effects. I was considering starting LDN to offset the general inflammation that comes...

A decade ago, I had a SPECT scan that showed moderate hypoperfusion throughout the parietal and temporal lobes. If I were to have one now I know it would be markedly worse.

I read the title of this post and feel this way after having a tetanus vaccine at Christmas. I was so ill with severe serum sickness and hospitalized for 5 days. Initially.the Doctor thought I manifested all the HORRIFIC signs and symptoms, apparently including my elevated ESR and resting heart...

Has anyone trialed or purchased the Ampcoil (www.ampcoil.com) and, if so, what has been your experience? Thanks!

They do tilt table testing and treatment, if indicated. They do anti virals, if indicated Blood work inclusive of immune testing-recommended IVIG for me Overall recommendations for.mitochondrial support, inflammation etc. Offer IV support ,when traveling distance, if indicated, during visit as...

Thank you!

I am trying to find one article that bring the point home that ME/CFS is biologically based to a Physician who has no or minimal knowledge of ME/CFS...one that incorporates the many elements of neuroinflammation, cytokine activity etc. Has anyone read this one and have an opinion...

When I called a few weeks ago.she had decided to stay on.

Dr. Laura Black at Hunter Hopkins in Charlotte is excellent.

Hello, I wanted to share my recent experience receiving the Td vaccine. I have had ME/CFS for 17 years with a history of a brachial plexopathy, Trigeminal Neuralgia, hypogammaglobunemia (on IVIG) and POTS ( diagnosed 2 years ago). Several hours after receiving the vaccine, I woke up with...

We all respond differentIy, but I tried IV ozone and went into anaphylactic shock and spent a week in the Hospital.

abnormal brain PET scan, low cortisol. low carnitine, Hashimoto's, low Total IgG and IgG1. low tumor necrosis factor, low natural killer cell activity, elevated liver enzymes, low WBC's,elevated mycoplasma and herpes virus titers

Greetings, Do you mind telling me the dosage and frequency that you use Lysine, Zantac and Cycloferon x 10 days to stop shingles? Also, do you know where I can purchase quality Cycloferon....I am in the U.S. Thanks so much!

Thank you for asking this question as my cortisol levels are very low as well and likely contributing to my hypotension, severe exhaustion, inflammation etc.. I just reached out to a Naturopathic Doctor for help but no appointments available until late January.

I had food poisoning last October and was hospitalized for 5 days. My liver enzymes became very elevated and were slow to come down until I started Glutathione injections twice weekly. My ME/CFS Doc said patients have such impaired detoxification pathways that when we have infectious insult the...

I, too, had that experience before I started taking 800mg of Magnesium. I find it eliminated the twitches for me.

Initially, I was receiving Gammaguard every 4 weeks with little effect. He wrote for it to be given every 3 weeks and that frequently has resulted in some improvement. He did tell me that 40gm IV every 3 weeks is the maximum dose he can write for regarding weight (130lbs.) and interval-3...