• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. Jackie M

    POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

    That seems like good advice, so I'm going to follow it. Not having any issues with shipping is $30 well spent. Does anyone recall specifically what needed to be on the label to be sure it easily gets through customs? I plan to read on it tomorrow, because I am worried I'll get a newbie at...
  2. Jackie M

    POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

    Good to know! Thank you. I have a fedex store nearby. I think rather than call, I'll just head over there with the address and let them help me label it appropriately. It's coming up as $99 to ship it FedEx priority from the Midwest, which would get it there Wednesday if I ship on Monday. UPS...
  3. Jackie M

    POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

    I probably should just call FedEx so I will know for sure how to prepare the label properly. I gave a pint of blood two days ago. I wonder if that can affect my antibody levels significantly enough to alter results from the blood draw on Monday.
  4. Jackie M

    POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

    That's rough! :( I stopped at the lab and dropped off all the instructions yesterday, and am going Monday. Does anyone here know their FedEx number? I didn't sleep a minute last night, so today was lost.
  5. Jackie M

    POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

    Thanks for the response. I talked to my local hospital lab and they will draw it and put it in a box for me. They said they regularly have to box serum samples for the CDC and the like, so it's no big deal. I have a doctor's order saying to draw one tube of blood, centrifuge, and give to me, as...
  6. Jackie M

    CFS or POTS: research into causes & treatments for people who took the Celltrend antibody test

    I think interesting additions would be: Positive for any other antibodies? When first positive for antibodies in relation to when first I'll? C3, C4 (complement) levels: Any current autoimmune diagnoses? Have any autoimmune treatments been attempted, if so, which symptoms were helped (or not)?
  7. Jackie M

    POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

    When Fed Ex comes to you, do they bring the Clinicpak wrap and a box, or did you need to use a box of your own in order to have it picked up?
  8. Jackie M

    Download for Rare SNP Analysis

    Looking at the criteria in an ICC primer I found on here, I do meet the ICC standards and I definitely have PEM. I have had a lot of the testing mentioned done, but have not been formally diagnosed so I will leave it up to you if you want to add it or not. I remember how when CFS used to be on...
  9. Jackie M

    Dysautonomia, Pyroluria, maybe both ? 23andme results

    I hope they are able to help you with your orthostatic hypotension. I have been reading a lot about genetics and autoimmune disease, and is a popular theory that in many cases, it takes several various factors for a genetic predisposition to a certain AI disease to express itself. So, it is...
  10. Jackie M

    Download for Rare SNP Analysis

    This is such a great program. Thank you for creating it @Valentijn and for all you do to help others learn how to navigate their 23andMe data. Are you still collecting people's data and compiling it?
  11. Jackie M

    "no call" for all GSTT1 genes. What does this mean?

    I got tested in July 2014 with the V4 chip. I have no call on all except 3 of the SNPs 23andMe shows for GSTT1. rs1130990: CC (less common than G but not rare) rs11550605: GT (occurs <.05%) rs2266636: CT (appears to occur < 1% looking at openSNP, but didn't come up in rare allele program...
  12. Jackie M

    Altered sympathetic reactivity & norepinephrine transporter expression in POTS

    @Valentijn -- Promethease reports the rs2242447 CC genotype occurs in 8% of Europeans according to their pool of genes, however I see in other populations, it is much more common. They only have 180 people for their European pool though, so it often can be very misleading...
  13. Jackie M

    Dysautonomia, Pyroluria, maybe both ? 23andme results

    You can assess yourself for a type of dysautonomia called POTS really easily at home using the poor man's tilt table test Taniaaust1 mentioned. POTS has all sorts of characterizations (for example, high or low blood pressure) but the only diagnostic criteria is a sustained increase of heart...
  14. Jackie M

    Another Medical Kidnapping

    :jaw-drop:
  15. Jackie M

    Does anyone have low IgE levels?

    This immunoglobulin is mainly known for its part in facilitating allergic reactions. It isn't paid much attention to and most labs list values of 0 as acceptable, but research does find people with extremely low levels tend to have certain issues. I had no measurable serum IgE the day after...
  16. Jackie M

    Altered sympathetic reactivity & norepinephrine transporter expression in POTS

    Bummer! The POTS doctor at Mayo said having a NET deficiency likely isn't an issue for me since my supine serum norepinephrine is normal and my standing norepinephrine skyrockets (increases five-fold). He said if I had reuptake issues, he would expect my supine levels to be high from when I...