skiberthoud

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!

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.

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 position you hold.I hope it turns out well for you

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...

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.

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.

"Fat, Sick, and Nearly Dead" is a fun documentary to watch about juicing.

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

Igenex labs and Neurosceince labs are the ones that seems most accurate. A good lyme literate doctor is also needed to get a diagnosis.

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.

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 first symptoms that something were wrong were autonomic in nature. Lyme is so prevelent here. Many of our friends have dealth with/are dealing with Lyme

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.

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!

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.

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....

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...

My experiences with NRT have been positive.

There's been lots of threads with this same topic...you should be able to find plenty of helpful information

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!

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.

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 things that make you smile. I hope, too, that you are able to find your faith again. It is a powerful thing, as long as it is based on truth. It may not take away our physical limitations but it can help us deal with them better. I truly hope that tomorrow is a little brighter for you and that soon you are able to find someone/something that is able to help. Don't give up!!

Issie said it so well: We don't want to die - we just want our situation to change. We were created with the desire to live - we are meant to live...just not this way And, Elfie, I think you are justified in your feelings. It's hard to keep positive all the time. We all have our moments. Chronic illness is something that can only be appreciated by those experiencing it. I feel so badly for all those times when I was well and would have a hard time having an equal amount of sympathy for those with chronic illnesses, especially those hard to see ones that we know so well, and those with "more serious" diseases. I also think that when people make comments about quality of life, those comments are relative. There is usually some good in any situation (there can be exceptions I guess) and we just have to see it. We all have heard or seen something that made us think, "I could never do that or never live that way" but if we were living it we would see the good and be greatful for what we had. So perhaps when we hear those comments about quality of life we need to put a filter on them. They may not be in our shoes and not understand that their words can confuse and hurt us, but it's really out of ignorance they are spoken, because when it really comes right down to it, they probably wouldn't really want to die if they had the same quality of life as us, they would just want it to change, like we do. After all, there are those who can barely communicate and are dependent on others for most things, and they still find joy in things. They think life is worth it! And that's because that's how we are wired. The desire to keep living is normal...the illness and suffering is not!

I've also looked into this as a possiblity for myself. Lyme can effect most every system in your body, including your ANS, so it isn't uncommon for those with Lyme to also have ANS issues including POTS (just like on this forum there are those with POTS and Lyme, on Lyme forums there are threads for those with POTS). Since POTS is simply a syndrome, then you should expect a doctor to look for a precipitating factor, so to not be willing to do a Lyme test doesn't seem reasonable. That being said, testing can be tricky. There are only a few labs that have decent accuracy with results, and those tests can be costly and not all docs use those labs (Lyme is such a political mess). The tests alone can not diagnose Lyme. A Lyme Literate Doctor needs to read results and take history and exam to make a diagnosis.

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 always some out there that are a scam, but for the most part they are really there to listen and help (just fyi - my first few visits, my ND spent two hours listening and asking questions). I hope you have a good experience.

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 it's when I'm feeling well, wondering when I'm going to crash again. When I get like that I try to change my self-talk to something positive, or even just realistic. For instance, I have always had ups and downs, so when I am down I can tell myself that I've been there before and it will change again, like it always does. I keep reminding myself to just ride the wave. I also find that regular daily Bible reading and prayer are essential. I also try to do something for someone else (even just writing cards to those I'm thinking about). That takes my mind off me and puts it toward something rewarding. Journaling has been another really big help to me. It helps me keep grounded.