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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. KimmyB

    Homeopathy for Lyme / Autoimmune - C128 LD Nosodes Formula

    @Wayne I just read through this whole thread, and I am very interested to see how you're doing all this time later. I hope you have a tremendous update of great health and progress!
  2. KimmyB

    What if I'm not THAT sick...?

    Hey gang! Guess what: I HAVE LYME. I got the IGeneX test back and I'm overwhelmingly positive for Lyme, but not the co-infections (though I know that you can still have the co-infections but test negative for them). Just figured I would update the thread, given that my original question...
  3. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    Hi everyone... figured I'd give an update, a month later. So, it turns out that I DO have Lyme disease. Got my results back and I have Lyme. Finally, the past 6.5 years of illness make sense. As for the Hydrocortisone wean, which is why I started this thread in the first place: I'm back...
  4. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    Would this be a genetic condition? Or something you contracted in another way? My DHEA is low right now, I'm told HC can suppress it, as can low thyroid. It was previously quite high, so I'm not really sure what caused the drop in the past couple of years. My care team is of the opinion...
  5. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    That doesn't sound pleasant, @bertiedog! What is the cause?
  6. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    What is POTS? Oh, that is quite interesting. I will have my IgenX Lyme results back in about a week along with the other infectious/viral tests, and I'm utterly dying to know if anything turns up. I was tested for EVB and was negative but that was right at the start of this journey 6.5...
  7. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    I'm gobsmacked. Are you even able to get out of bed?? My gosh, woman. How does a person get all of those conditions???? How long have you been ill, and what have your symptoms been? I can't even comprehend. No, I haven't tried a cleansing conditioner. I wash my hair only once a week...
  8. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    That's interesting that you say that about 17.5 -- that's exactly when it started to go off the rails for me too. My hair started to fall out a bit around 15mg and has ebbed and flowed with yesterday being the absolute worst of it. This has been the conundrum though: I felt pretty sh*tty on...
  9. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    Oh, @Ema, I did want to ask you again about the no-man's land you talked about... I forgot in my earlier message. When you weaned down, did you experience crossing over into the no-man's land, so to speak? OR, if your adrenals are strong enough, does a person go into the lower amounts of HC...
  10. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    Three questions about that: 1) Did you have any fatigue at all during the wean? 2) How long had you been on HC by that point? 3) Did you fix any underlying or connected issues (eg, thyroid) before the wean? Yes, sorry, that was a stupid question... I realized after the fact. Apologies...
  11. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    Aldo & Renin are normal. I'm not really worried about the other hormones; I believe my practitioners are finally keying in on the underlying cause for me, and I think everything will become clear when that happens. Right now, all I'm trying to figure out is weaning HC and whether I should...
  12. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    I think though, that if you're on too low a dose, you also cause your adrenals to down-regulate. It's the body's feedback loop, it senses the supplemented cortisol and stops producing as much. @Ema had you tried to wean before that? Was this the first time? And how did you know it was be...
  13. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    Oh, I'm definitely not going to try Pregnenolone unless my IP or ND come up with that as a necessity based on my labs. I don't disagree at all. What you said is likely correct to some degree. My current suspicion is this: I think I picked up a pathogen of some sort at some point between...
  14. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    Interestingly, I've been subclinical hypo for... well, probably 6 years now. But the heart pounding only started after I went on thyroid medication in October (which my body couldn't tolerate for unknown reasons so I went off and the heart pounding stopped immediately. The hair loss only...
  15. KimmyB

    What if I'm not THAT sick...?

    So... in other words... Yasko and Lynch are just peddling their wares?! But what about the people who have followed the Yasko/Lynch protocols (or Freddd or whoever else) based on their 23andMe results, and have found better health? Does this mean you disagree with the notion of addressing...
  16. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    My thyroid is producing hormone (on the very low end of "normal", whatever that means really) but it doesn't seem to be getting into my cells as I still have a ton of hypo symptoms. I was supplementing thyroid hormone from October until March, and my body responded quite badly. I've wondered...
  17. KimmyB

    What if I'm not THAT sick...?

    Well, I already did the IGeneX test so it's too late not to bother with it. :) What is the difference between that testing and the LLT ELISPOT for Borrelia? Why is that one so much more reliable?
  18. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    @Ema Can I give you a hug? Because, seriously, you are the first person I've come across who seems to have any clue at all about this! HC seems to be an utter mystery to everyone... and there's virtually no information on the web about it either. I don't know if I can get the serum cortisol...
  19. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    @Ema Not sure if you're still around, but I see from other threads that you may be someone to talk to about this!
  20. KimmyB

    Weaning Hydrocortisone (aka Cortef)

    Hey folks... Just wondering if anyone out there has any particular knowledge about Hydrocortisone and the weaning process? I've been working to get off of HC since March (I have been on 25mg/daily since September, so 8~ months based on a flat-line saliva cortisol test result) and have hit a...
  21. KimmyB

    What if I'm not THAT sick...?

    @Valentijn, this confuses me. CBS SNPs have very little impact? I don't understand how that's possible. If my guesses are correct (and should soon be verified via a methylation test I just had done), I've got a problem with CBS upregulation... which would mean I've got a lot of sulphur...
  22. KimmyB

    What if I'm not THAT sick...?

    Oops, I had to make a second reply as the Multiquote wasn't working properly. Is the Western Blot considered accurate, though? I'm not sure of the name of the one she wants me to do, but it's $1000. (gulp) Absolutely, @Misfit Toy! As I mentioned in my original post, I did have a rash but...
  23. KimmyB

    What if I'm not THAT sick...?

    That's just it... I was working with a very knowledgeable ND who specializes in Lyme, and she said in her opinion, I don't have it. It was her clinical diagnosis that sent me in opposite directions, never following up on Lyme. She is a Lyme Literate Doctor, no question... but oh how I wish I...
  24. KimmyB

    What if I'm not THAT sick...?

    LOL!!! Thanks @msf , I had a good laugh at that. :) That's good to know... I mean, obviously I don't WANT to have Lyme. But after 6.5 years of unexplained illness, after previously being uber-healthy, I just want an answer and something that I can treat. So then... do people who are...
  25. KimmyB

    L Methionine

    I supplement 2-3tsp of real sea salt daily, I don't think it's a low salt issue. But thank you for the suggestion! Hi @caledonia! I did the ONE (Optimal Nutrition Evaluation) test which is by the same company as the Nutreval test -- they're very similar but Nutreval looks more...
  26. KimmyB

    What if I'm not THAT sick...?

    Hi everyone, After 6.5 years of mystery illness, I'm seeing a new Naturopath who wants to get me tested for Lyme. I had another Naturopath -- a Canadian Lyme "expert" -- rule Lyme out about three years ago because she didn't feel I presented with enough of the symptoms. I never had a bullseye...
  27. KimmyB

    L Methionine

    That IS interesting. I just checked one of my supplements, and it turns out I've been taking 100mg/day of Methionine for a very very long time. It was 200mg per day for a while but I reduced that supplement a while back. Hm. I wonder if the amount makes a big difference. In any case, it...
  28. KimmyB

    L Methionine

    Thanks for that info, Caledonia! I've watched those videos... I guess my question is this: I am compound hetero for MTHFR. And I've read what feels like hundreds of hours of posts of Freddd's on this forum, and your primers as well. And still, I'm not sure if my methylation is impaired...
  29. KimmyB

    L Methionine

    Hey everyone, I'm wondering about L Methionine. I was recommended to look into taking it to deal with the edema/water retention I'm stuck with, but I like to do my research first to make sure it's going to be okay for me, and I just don't know. I've searched and Googled and researched some...
  30. KimmyB

    THE STAGES OF METHYLATION AND HEALING

    Hi @Red04. I don't know if you're still around, as your name doesn't come up. I was just wondering about your wife's situation, where she started from and where she's at now with symptoms, etc.