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skiberthoud

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Everything posted by skiberthoud

  1. I think it could definately be a good thing. I think that much help can be had from various supplements, vitamins, herbs, etc. You need to be informed and educated so that you can make good choices. Not all vitamins are created equal. You want to make sure whatever you take is not made with any fillers that would be counterproductive to helping yourself from the inside out. If you can find someone that you trust, whether it be a naturopath, integrative doc, functional medicine doc or herbalist...whatever, you may find some really nice benefits. Just a thought...
  2. I am a huge fan of integrative and function medicine. These are the docs that have helped me the most!
  3. An excellent read that provides a wealth of information is "Digestive Wellness" by Dr. Elizabeth Lipski. I highly recommend it. Perhaps you will find some helpful clues there...
  4. Sorry for all your heartache! I think you've gotten a few really good tips here. I also agree that a functional medicine doctor could prove really helpful. That's where I've found the most help. They typically are really good diagnosticians - looking at a variety of things. It's a long, hard road (really long for you sorry for that) but please don't give up. Keep searching for someone that can help. Never settle and always believe you will get better!
  5. I agree with Sandyshell. I think much benefit can be had from integrating different approaches. I have my MD and my ND who work harmoniously together. When I first stated seeing my ND both my parasympathetic and sympathetic systems were overstimulated. Through the work that we've done on my "whole" we have definately achieved more balance between these two systems, as well as other benefits. I'm not sure that you can find a "cure" but I do think that there are ways to make improvements.
  6. I'd guess it's Mestinon. That seems to be one of his first drugs to try. He put me on it the first time he met me, before he did any testing. There is a lot of great info on this forum about everything POTS related and then some. Utilize the search option to find previous threads for any subject.
  7. Glad things went well for you...or that you "failed" in their presence I hope he is able to help you figure out a good treatment plan. Yes, lab rat he is. He loves his lab and all his equipment. Outside of the lab I found him just as pleasant but not distracted by his toys. I'm also curious what med he started you on... I hope your appt later this week goes well
  8. Sounds like you could use some B12, Lieze
  9. Thanks for being wonderfully proactive, Issie!
  10. Lotusflower, I'm not sure where Sallyblooms had her tests done, but Neuroscience is a lab that does neurotransmitter testing. Check out their website - they offer so many really cool tests, mostly neuroendocrine.
  11. Happy Mestinon user here. I've never had any negative side effects and have only had positives from using it. It makes me go from non-funcitoning to functioning and I'm really grateful for that!
  12. I'm also curious about this. I'm curious what the "exercises" are. Let us know what you find out.
  13. deja vu...this question was posed here before within the past year...you may want to do a search to find the thread. i am in the medical field. i'm a physical therapist assistant. there are quite a few health care workers around here - interesting - lots of nurses...
  14. I have pretty much constant swollen lymph nodes, but in my neck. Mine are the soft jelly-like nodes. I know that with swollen lymph nodes the doctors say if they are hard or grow that's when you need to have them checked out. I'm glad your headed to your doctor and I hope things go well and this is a "non issue" for you:) I'm curious to see what others have to say...
  15. That's something that I would definately mention. I'm not so sure what it's from, meds or otherwise, but definately mention it, to whoever you feel comfortable with. Sounds like you need a new GP. I know it's such a pain to get a new one (it's always a gamble trying a new doc) but I hope you are able to find one that takes you seriously and validates your concerns.
  16. Sorry I don't have anything to offer that helps. This happens to me as well. For me it only happens when I'm at my worst, which I am grateful for. I go into "quiet mode." I keep the talking to the bare minimal to conserve my energy, like you said. I have to say that it is a really weird feeling when you just can't talk because it just takes too much out of you. I would never be able to understand if I didn't go through it. You're not alone.
  17. From what I know allergy testing for the most part is not dangerous. There are a few different methods of allergy testing. With the ELISA test, it's a blood draw, and it can check both IgG and IgE (for both allergy and sensitivity). I recommend continuing to educate yourself on the different types of testing that are available, finding a good allergist/immunologist (i'm sure there are plenty that don't know what they should about masto/mcad) if you don't already have one, and finding out what testing they prefer and why. I have had allergies all my life, though they have changed. My food allergies are actually better than when I was younger, but my environmental allergies have gotten worse. I don't really think any of my sensitivities/allergies have been related to my dys, but that's just me, I think others have a different experience. I hope all goes well for you.
  18. My experience has only been good on Mestinon, from day one. I will say this, though, that before/during my period it doesn't seem to help one bit. So, I'm not sure if hormone changes have a big impact on how you feel or not (and this might not be applicable to you right now anyway) but I'd say that if that could be a contributing factor you may want to give it some more time. I'm sorry you aren't having a good experience. I know you were really hoping for it to really help. I hope that things even out for you, or you find some resolution to the "dip" one way or another...
  19. Naomi, I'm going through my PCP - they have the kits. When I was reading your post about the positive band I thought I had remembered reading some older posts that had more details. I just did a search and you might find some valuable info that way. There were a few in depth threads about lyme from years back. Once I did a search for "lyme" and one for "igenex" and got some good reads. This whole realm of lyme is controversial - does it really exist? Are any of the tests reliable? Should you treat with anitbiotics or alternative appoaches? I guess we have to just keep trying to educate ourselves. I am not sold on the idea of Lyme for me personally, but I'd love to get it ruled out (and if it's positive then i have something definate to work with). My PCP was at an "infectious disease" conference recently where they spent a lot of time on Lyme and she told me it seems so "me." We shall see. But do go and look up those old threads, and watch that documentary... 718mom - Right! I think my mouth was stuck open for days after watching it. I saw it back in May (Lyme awareness month so PBS was airing it) and I'm ready to watch it again (of course I seem to be on a documentary kick lately...)
  20. Sorry I don't have much to add - I'm still learning myself. Funny, we had a family friend who was "ill" for a couple of years and then found out it was lyme. The majority of his symptoms were classic dysautonomia/POTS symptoms. It all started with passing out when he stood up...sound familiar? Of course, he got sick a few years before me and at that time I was ignorant to this whole world I now know. I think that Lyme can definately be the cultprit in some cases. Does someone with Lyme actually have POTS or is it that the "syndrome" (a compilation of symptoms)is a manifestation of Lyme? Sorry I don't know anything about the bands - haven't gone there yet. I am actually going for my blood draw tomorrow - off to Igenex it goes! Where in the NE are you (I'm in MA)? Have you seen the Lyme documentary "Under Our Skin?" Very interesting! And,yes, I agree that it's rediculous that insurance companies have ousted LLMD's so it costs crazy amounts of money to see one! Arg! Sorry for your frustrations...But I'm glad you brought it up. This topic has been on my radar lately.
  21. I'm also much more symptomatic just before and during my period. It's a good 7-10 days of feeling my worst...
  22. Elemental hair analysis is a good way of testing for mercury. Incidentally mine is low and my ganglionic antibodie test was neg and Mestinon works wonders for me. But I love this research and thinking!
  23. I didn't get that impression from the title at all! I guess it's all in how we read it. I'm looking forward to reading the article...
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