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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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  1. Stacey1121

    Finally started IVIG

    I am not sure what all of your health issues are but I have been getting ivig for years and it definitely has it's ups and downs. The brand you got may have something to do with it - there are many different additives with different brands - it is possible (and maybe likely) that you are...
  2. Stacey1121

    Rituximab Phase III - Negative result

    Thank you very much for your response. I will check out the links and yes, hopefully this works out well for everyone! :)
  3. Stacey1121

    Finally started IVIG

    I apologize ahead of time for the long response here but feel like the details might spark some thoughts. I am so glad I found this thread - lots of background but it is relevant to my (ultimate) questions. I have had ivig infusions for a 2+ years and have slowly worked my way up to 120 grams...
  4. Stacey1121

    Rituximab Phase III - Negative result

    I am so glad I read this post bc I have high phenylalanine in my blood and it makes perfect sense that I am using amino acids instead of ATP on so many levels. can you remember where you saw the study by chance? My phenylalanine was 91 on a scale of 26-71 on the nutra eval. I won't take any...
  5. Stacey1121

    Vasoactive intestinal peptide (VIP)

    Not sure if anyone can help me understand this but about 3 weeks ago I started the VIP nose spray and it helped with energy and brain fog SO much and still does. However, I developed bumps all over my lips and a few on my face and chest after about 1 week and I had not connected the dots (so to...
  6. Stacey1121

    Ketotifen

    I was just (finally) diagnosed with CVID - I have low IGG and my GI inflammation is so bad right now - waiting for insurance to approve the ivig (they said will take at least another 3 weeks). Everything I eat kicks off a (loud) volcano in my stomach and all that follows. Did anything help your...
  7. Stacey1121

    Low overall IgG serum and Low subclasses 1 and 2?

    that is for sure! Thanks for the thoughts...I have done a lot of treatment and if any of my experiences might be helpful to you please lmk...:redface:
  8. Stacey1121

    Low overall IgG serum and Low subclasses 1 and 2?

    I could not find a good immunologist in San Diego so I am going back to Colorado (used to live there) to see a dr. that is supposed to be one of the best, Dr. Issac Melamed at http://immunoehealth.com/about-us/providers/ - a dear friend and very accomplished integrative med doc, Dr. Robert...
  9. Stacey1121

    Low overall IgG serum and Low subclasses 1 and 2?

    Did you have any reaction to the vaccine? I think I read you have to wait 4 weeks? Do you have low igg subclasses? I thought with low igg and subclasses you can qualify for ivig - I am guessing you have not done that yet?
  10. Stacey1121

    Low overall IgG serum and Low subclasses 1 and 2?

    PCR was before treatment - have not repeated yet. I never had bloodwork done for babesia - I should do that before my apt in 2 weeks. My husband's PCR was only pos for the babesia divergens - so its def in the family here.
  11. Stacey1121

    Low overall IgG serum and Low subclasses 1 and 2?

    Thank you @duncan - I will take the hundreds of pages of labs with me - at this point I think its my only hope. Did you do the vaccine challenge? Do you have CVID? Lyme? I think a lot of my symptoms could be related to the babesia - and some were better with treatment but returned with a...
  12. Stacey1121

    Low overall IgG serum and Low subclasses 1 and 2?

    I think this maybe what you are asking re antibodies: Igenx: IGM: Band 31ind, Band 39 indt, Band 41++, Band 83-93 ind IGG: Band 31+, Band 41+ CD57 was 51 (40-98) NK Cells were 2.3 (2.26-4.65) LABCORP: only 1 band abnormal IGG Band 41 Abnorma1 IGM Band 41 Abnormal
  13. Stacey1121

    Low overall IgG serum and Low subclasses 1 and 2?

    My pcr is a lyme dna test that was pos for borellia burdorferi, borellia recurrentis, babesia divergens, ehrlichia chaffensis - repeated blood work for lyme from several labs kept coming back indeterminate or negative. No I have never had the vaccine challenge for CVID - is that the only way to...
  14. Stacey1121

    Low overall IgG serum and Low subclasses 1 and 2?

    Now I am really confused - So my symptoms correlate with my infections - and if I am having a hard if not impossible time getting rid of (or staying better from) my infections - couldn't that be at least partially bc of low immunoglobulins. Isn't low immunoglobulin indicated as a problem with...
  15. Stacey1121

    Low overall IgG serum and Low subclasses 1 and 2?

    Thank you so very kindly for your response. I did forget to list symptoms - well lets start with the obvious then :) memory problems, brain fog, extreme fatigue, muscle weakness, low blood pressure, elevated pulse, Raynaud's disease (hands and feet turn bright red with blood pooling and then...
  16. Stacey1121

    Low overall IgG serum and Low subclasses 1 and 2?

    @Jonathan Edwards I know this is an old post but if you would be so kind I have a question. My lab results are as follows: Immunoglobulin G, Qn, Serum 490 Low mg/dL 700 - 1600 02 IgG, Subclass 1 284 Low mg/dL 422 - 1292 03 IgG, Subclass 2 110 Low mg/dL 117 - 747 03 IgG, Subclass 3 24 Low mg/dL...
  17. Stacey1121

    Magnesium Threonate is like Speed!

    Is that effect dose dependent? On my bottle a On my bottle 3 capsules are equivalent to 2000 - so I tried one capsule to make sure I was not going to have a weird reaction and it made me tired - which is what I thought magnesium usually does - relaxes.
  18. Stacey1121

    Magnesium Threonate is like Speed!

    I was wondering if you are still on the Magnesium L-Threonate? If so, can you tell me how you feel it is helping, if you continue to experience a stimulating effect and what your dose is? I think it might be really helpful for me and any follow up info is greatly appreciated. I am experiencing...
  19. Stacey1121

    BH4 - GCH1 Question

    I I HAD AN ALL IN ONE I STOPPED TAKING BC IT WAS RAISING MY SELENIUM LEVELS AND SYMPTOMS. GOOD LUCK AND BE WELL!
  20. Stacey1121

    Unfolded Protein Response and A Possible Treatment for CFS

    I have very high (unexplained) levels of selenium. I take no supplements with selenium and do not eat any "high" selenium foods that would account for this. I am also hypothyroid. I have been making gains with Freddd's methylation protocol - with body pain and weight gain - but not as great with...
  21. Stacey1121

    BH4 - GCH1 Question

    You seem very knowledgeable - are you a practitioner or researcher? I am an artist so this whole situation is really unfamiliar ground, but I will do whatever it takes to feel better. The reason I ask is that my doctor(s) did not mention the high phenylalanine as a potential problem - its has...
  22. Stacey1121

    BH4 - GCH1 Question

    Here are my GCHI snp's GCH1 rs10131232 A AA +/+ GCH1 rs11158026 T CT +/- GCH1 rs2878169 T GT +/- GCH1 rs3783641 A AT +/- GCH1 rs3783642 C CC +/+ GCH1 rs4411417 C CT +/- GCH1 rs7147286 A AG +/- GCH1 rs752688 T CT +/- GCH1 rs8017210 A AG +/- These last two supposedly affect upcycling of BH4 as...
  23. Stacey1121

    BH4 - GCH1 Question

    I have several mutations of GCH1 Now I am the new member and am very curious as to how the BH4 worked for you. I have never been diagnosed with PKU but I have several GCH1 mutations (no PAH mutations on 23&me) and extremely elevated phenylalanine (1263+ μmol/L) with very low tyrosine. I am...
  24. Stacey1121

    .:: Sustained-release Methylation Protocol (SRMP) ::.

    So interesting - I have the MAO A R297R +/+, the MTRR A66G +/-, and MTHFR C677T +/- (not sure if yours is that MTHFR) - and by chance I started taking B2 bc my bloodwork showed it was low. Then I tried active B12 (again) and was able to tolerate it in smaller doses (so far) - and reading this...
  25. Stacey1121

    Raw Thyroid Glandular

    I have tried just about every thyroid medication or natural alternative on the market. I have been hypo for 15 plus years. There is a newer desiccated thyroid medication that is completely standardized now for dose and has virtually no fillers or additives, WP Thyroid. I take it along with...