Egad! I am so sorry that you have gone through so much -- and I admire your grit and focus on figuring all this out and getting it fixed once and for all.
Do you know if the doc you are waiting to see is an ILADS member, or has a known reputation for following ILADS approaches to diagnosis and treatment? Sometimes it is not possible to know ahead of time, but if you can avoid a doc who really isn't the ILADS-type mold, so much the better.
Just as an aside, do you take magnesium (Mg) supplements? Lyme bacteria use up Mg in the body, leaving a trail of odd symptoms that are annoying and aggravating, but often are not something nonLLMDs are much interested in. Any variety ending in "-ate" is said to be most absorbable: Mg malate, citrate, aspartate, etc. I like Mg malate and one that is a blend of Mg citrate, aspartate and orotate (called Magnesium CAO). Just a thought, and be sure to tell your doc if you taking any vitamins, supplements, etc., and at what dose for how long.
About the Meridian Stress Assessment test, I did a little reading just now, and would have doubts that it would be useful ... but I'm not medically trained. Just my opinion. I'd spend the time and money on a good Lyme doc instead.
Keep us posted -- we're rooting for you! You got grit, and I do admire that.
Thanks for your words of support, they really mean a lot. Having all this going on makes it very isolating at times, because no one really understands all that you feel. And seriously? Who wants to listen to it all the time either? I wouldn't, so I don't talk much about it to my friends or family until recently.
And lately I have realized why I don't say much.. I either get "oh are you feeling better today?" or they have just stopped calling all together because they don't want to bother me or think I can't talk because I feel like crap, so I almost feel worse by opening up and talking about it.
Funny how people online who you never met are really the only ones that even have a clue about how I am feeling... not that I want anyone I love to feel like I do anyway.
It's just lonely that's all.
Anyway, the only magnesium I get is taking Epsom salt baths when I feel really bad, but I think I will look today and get something else. I currently take Turmeric, curcumin, white willow bark, probiotic, and ibuprofen as needed. It's not working that well, so please don't take this as medical advise. I don't like prescription anything as I am very sensitive and don't want to change or add too much until my appointment.
Yes, the Dr is an ILADS member and was a referral from their site. There were 3 LLMD within an hour of me, WI must be a bad state for Lyme.
Thanks for your time in posting, it is more appreciated than you know.
About posting here -- it's how I get my revenge on the 'bugz' -- the Lyme bacteria. :)
I've been well for several years now, and just keep showing up here because I know how ill and bewildered I was diagnosed. When you are well, maybe you'll show up here sometimes too -- it's sweet revenge on the Lyme bugz.
One part of Lyme can be feeling gloomy, and you might have some of that going on. Lyme messes with the whole endocrine and hormonal system in subtle ways, but once treated, things go back to normal. On a bad day, I would go around muttering to myself, "It's not me -- it's the bugz", over and over. It's important to remember that we are not the illness, and know that the good life will return.
I have read that Lyme uses up magnesium (Mg) in its reproductive process, which can leave us deficient and gloomy -- on top of the fact that the American diet can be low in Mg. I still take Mg capsules every day, and feel better for it.
When I had Lyme, I saw one of my non-Lyme docs for something, and when he saw the list of meds and supplements I was taking, he sneered at the Mg and told me it would give me diarrhea ... which it can, if too much is taken. This particular doc didn't understand Lyme, tho, and therefore didn't know that Lyme uses up Mg in the body, so he was preaching from his medical book instead of looking at the patient -- or knowing much about Lyme. All I was doing was replacing the Mg that Lyme was using up from me. Never got diarrhea.
And yeah, I've read that there is a lot of Lyme in Wisconsin. See how it goes with your new doc, and if for some reason it's not a good fit, then look for another. Go for it! and keep us posted, okay?
I have never done it but know people that have with no luck.
Thank you so much for your suggestion on the Mg. I started this yesterday and OMG, what a difference! I took 1200 mg , 400 x 3 times a day and oh man! My head is clearer and my pain is diminished and my mood is way better. I feel like someone gave me happy pills! Seriously! Wow, it is supposed to work that fast? Or is this all in head? Well, whatever it is i feel better. what a relief .. i finally have hope that i can make it to my appt date in sept without going crazy!
Yeah, Mg is magical stuff when the Lyme bugz have been chewing up all the Mg in your system. I still take it everyday, just not as much as when I had Lyme, and it's very soothing.
I read somewhere along the way that the modern American diet doesn't have a lot of Mg in it, so many of us are deficient without knowing it. I had a couple of docs sneer at me (docs other than Lyme docs) when I told them all the meds and vits I was taking ... a few of them said it could be harmful in some fashion, but after doing more reading, went back to taking it, and even now, some years after I got rid of Lyme, I still take it every day.
You know how babies get all floppy after they've been fed? It's partly the warmth, partly the closeness to whoever is feeding them, and partly the *magnesium*! How about that. Another doc told me that if I got diarrhea, then cut back on the dose till my gut was okay, and use that dosage -- since everyone is different. I never had any problems, and I'm sensitive to a lot of stuff. Enjoy!
--> And everybody note, there are some formulations of magnesium capsules and pills that use types of magnesium that do *not* end in '-ate' -- those are hard to digest and not absorbed as well for some of us, so I read. I stick with 'magnesium ___ate' (such as magnesium malate, orotate, citrate, etc.) in capsule form rather than the hard pills (which may not digest as easily for some of us). I tried several varieties and found some that suited me well, and I still take them everyday.
Enjoy! Let us know how it works (or doesn't) for you too.
When I first realized I had Lyme I had to take prescription mag vitamin, vitamin D and B-12. Now I take the regular supplements
My son was i guess unofficially per medical standards diagnosed via biomeridian but its the only diagnosis he has gotten for all his lyme symptoms. He tested positive for babesia and bartonella. Two full months on antibiotics and barely any decrease in symptoms.