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Everything posted by skiberthoud

  1. So with the Neuroscience testing they look at Immune Tolerace Test and Cytokines to identify immune response to BB and co's. My PCP recommended I see a LLMD after my Igenex Test came back questionable. The LLMD had me do the Neuroscience testing to get another perspective and help him figure out what was going on with me. As far as insurance...I think that Neuroscience was at least partially covered by my insurance, but to be honest I don't remember because they sent the wrong test kit the first two times, so they paid for my testing because of their mess up...I was grateful!
  2. I did testing through Igenex, then also did My Lyme ID through Neuroscience labs (looking through different mechanisms). These labs seem to have the best accuracy, however there is still a decent margin of inaccuracy. As Katybug mentioned, you really need to have see a Lyme Literate MD - diagnosis of Lyme is clinical, not just test results. ILADS is a great resource.
  3. Your value or worth is not determined by a number. I once had to take a "lesser" job, but I found that even in that position there were things I learned and I was able to focus on doing the best job I could. From what you say, it sounds like it may be a really good fit for you. Perhaps the "lesser" job will give you the ability to do a job you love in an environment you love, but with less stress. That sounds like a good thing to me. I don't mean this rudely at all, but leave your pride at the door and enjoy the work you love. Your talents and worth will be seen by all, no matter what p
  4. So for #1 I choose waxing/waning, but I also think it's slowly improving. It still waxes and wanes but I feel that my lows are quite as low and don't last for as long. I am much more consistently functional than I was two years ago. The third question...there are times I feel a full head when leaning forward, but it's not consistent...so I'm thinking maybe it's congestions vs blood? Anyway...that's all...
  5. I agree with what julieph85 said. When I had my TTT done my HR had 30+ increase, but it wasn't sustained, and because of that they didn't want to give me diagnosis of POTS. Since then, every other doctor I've seen has said that 30+ increase initially or sustained is considered POTS.
  6. Yeah, i loved watching it. It motivated me, too. I am going to do it, but not yet - I have some other things I'm working on right now. But it's definately on my "must do" list. Let us know how it goes.
  7. "Fat, Sick, and Nearly Dead" is a fun documentary to watch about juicing.
  8. So glad you had a good experience (except for the mag)! It's refreshing when you meet someone who wants to find the source of the problems! And it is a slow process...one thing at a time, so I get what you said about going for the "bigger stuff" first. I hope that you are able to continue on this course and have positivie results. Remember, you're an onion and need to peel those layers of healing
  9. Igenex labs and Neurosceince labs are the ones that seems most accurate. A good lyme literate doctor is also needed to get a diagnosis.
  10. I don't have Lyme. I am grateful. We thought for sure I did. My test through Igenex was equivocal - also did the My Lyme ID test from Neuroscience Labs. Also equivocal and negative for all of the co-infections (it's very rare to have Lyme without co-infections). With those tests and my clinical manifestations, my LLMD said my issues are not Lyme. Sorry if I confused you about me and my diagnoses.
  11. So what came first tablet. Was the Lyme first for most of them or was the autonomic disfunction first? You see, I have interest in this too ---I was bitten by a tick and from that time on - things seemed to get worse for me. But, I know my autonomic things came first - cause I've had them most all my life along with EDS. So, in my case - the tick bite was not the CAUSE of the dysautonomia - but, may be a peripherial thing -IF there is a bacterial problem in regard to the tick bite --in my case. Issie For many of them it was the Lyme that came first, and for pretty much all of them their
  12. Issie, most of my friends with Lyme have autonomic dysfunction as well. For a while when Lyme was a big question for me I was on the Lyme boards and quite a few people on there also had POTS or other autonomic disfunction. I agree that Lyme needs to be considered. I also think that if you consider Lyme you need to do your research and have a good Lyme Literate Doctor.
  13. Just a side-thought on the blood sugar thing. A lot of people think "less carbs, more protein" to keep your blood sugars stable. True to a point, but low carbs, more good fats is going to help even more to keep them stable (of course if you're having a yummy nutty snack you're getting the best of both worlds I guess). I haven't a clue for you on the hormones...I've been trying to figure that out myself. I feel like everytime I get something figured out, I realize my theory doesn't hold up I hope you're able to have some more really great days!
  14. POTS is my only diagnosis, but I have other stuff getting uncovered as well, but not "disease" in nature (just things not right in my body). I wasn't satisfied with getting a "label" and treating symptoms as a bandaid solution. I'm not sure that I'll ever get it figured out entirely, but i do believe that the digging has helped me make all the progress I have.
  15. I agree with Issie. I always bring a list with me, not only of symptoms but anything I want to ask about/discuss. I also make sure I have paper and pen with me because I also take notes. But that's just because I never trust my memory I'm very excited for you. Have fun and enjoy your appointment. Let us know how it goes....
  16. I don't seem to have auto-immune issues and I don't have any experience with DHEA, but if they are saying that there is benefit from estriol then it would make sense that there could also be from DHEA since it is a precursor to estrogen. But I really have nothing else to add to this, Issie...just wanted to say something I did read that thread and thought it was interesting...
  17. My experiences with NRT have been positive.
  18. There's been lots of threads with this same topic...you should be able to find plenty of helpful information
  19. Welcome Gloria! Glad to hear you've been enjoying this fourm. It is filled much information and very supportive people. We probably live relatively close to each other. I am familiar with both Dr's you mentioned. Feel free to PM me with any questions. Enjoy yourself here! Hope you find some of the answers you are looking for!
  20. This is a common problem among most humans! at least the ones living here in the US. Supplements. I prefer the liquid - it seemed to get my numbers up better than others.
  21. Lindajoy, I am so sorry for how you are feeling. But yes, let it out, vent it out. We are hear to listen, support and hopefully encourage. Losing hope is a terrible thing. I remember when I was at my worst and I wondered if there was anyone who could help, my mom would tell me we just had to find the right person who could help. It is like finding a needle in a haystack. I'm sorry it's been so long that you have struggled. I know you are tired and discouraged, but don't give up! You have talents and value, even if you can't see them right now. You can still benefit others and find thi
  22. Working with my naturopathic doctor has been a great experience. Dizzy's explanation was great. They do try to find out the underlying causes and work on those, or at least give your body the internal support it needs to heal itself from the inside out. Just remember that when working on things naturally it takes time. If you are looking for the kind of immediate results that "drugs" can give, then you may be dissappointed. The journey can be long, but the long term results are what's most important. Also, be honest and up front with the ND about your concerns and questions. There are a
  23. I have never been hospitalized. I've gone to ER a few times, before being diagnosed, but never stayed. At first I was not very functional - couldn't work and couldn't do much of anything except keep us fed and relatively clean . Over the past year I have made some really great gains and am functional most of the time (by functional I mean I can do what I "need" to do, and occassionaly even a little more, but still not working). I still experience ups and downs. Those "what if" thoughts do creep in. Sometimes it's when I'm in a "hole," wondering if I'll ever feel good again, and sometimes
  24. I also used to have the horrible pain as well. Was SO sure my gastroparesis test was going to be a huge positive, but it was not. I also have GERD and a hiatal hernia (since birth ). I've worked on my digestion a lot with my naturopath. I've detoxed and changed my diet, as well as increasing my probiotics and making sure I take my digestive enzymes. From time to time I still will get some discomfort but it is much better. I hope you are able to find some permanent relief soon. Oh, if you like to read my favorite book about digestion is "Digestive Wellness" - good read with lots of info.
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