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Rachel--24

Omg...i Might Be On To Something

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Well, I ran out of 5HTP a few days ago .... yesterday and today I woke up at 5:30. I don't go to bed till about 11:30 so that's WAY too early. So, I think the 5HTP must have been contributing to my better sleep I've had lately. I hope I remember to buy it today! (Kassandra, remind me! ;))

Nyxie, so does this post mean you figured out the laptop! I CAN'T WAIT to hear how your appt. goes!!!! What time is it?

I hope Kassandra feels good today. She had a nice break from the Mepron ... but she started it back up last night. She doesn't "look" sick, LOL.

Let's hope between the two of us we can remember, LOL! :lol:

Nyxie....I can't wait to hear about your appt.!!! :D

Carla is right...I don't usually look sick, but as we all know, that means NOTHING! LOL! :lol: I look sick when I get pale, but I am pretty good at covering that up with make up. ;) I'm also really really good at NOT telling people when I don't feel well. LOL! I don't like to sound sick, so I would rather put up with the symptoms than talk about them or tell people how I'm feeling. ;)

Yea, so far so good on the mepron. I am hoping that it doesn't start to kick my butt. I know what will happen, I'll get home and feel terrible, LOL!

Last night I slept for 13 hours!! It was AMAZING! I went to bed at 11 their time (8 my time) and fell RIGHT asleep, then I woke up at 12 (9 my time) this morning/afternoon. It felt so good to sleep so long!

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Remember that show on MTV called The Real World? There was this girl who had Lyme Disease. I was like 21 when it came on so it was like 14 years ago. :o Boy does time go by fast. So yeah she had all this attitude, always crying and screaming.

Then nobody started liking her because she would always freak out. She would explain that she had Lyme Disease and nobody really got it. Well she left the show because of her illness.

I was in like in my mind saying that she's crazy, she doesn't look sick. :blink: Hmmm I need to google that up and see which one it was on.

Oh p.s.

Is crayola watercolors non-toxic to people who are toxic? I want to start my art again. Is pencil, charcoal or acrylic okay if it says non-toxic? Any other artist out thier?

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Well, I finally got this laptop thing figured out. Now if only I'd quickly get used to the small keyboard. But I digress....

I have lyme!!!!! Chronic lyme at that. And probably babs and possibly bart. They ordered a whole lot more testing (12 tubes of blood worth). Getting titres and RNA tests done for both babs and bart through Igenex. Also being tested for all kinds of funky virus stuff, other TBDs, HLA gene thingies, and I don't really remember all what there was.

They're starting me on Doryx (doxy), Palanquil, and the full Cowden protocol, plus a bunch of other stuff. Eek! They also took a look at my previous test results and said my candida isn't nearly as bad as I'd been told it was. Nonetheless, I'm also starting on Nystatin.

They also are recommending bioidentical hormone replacement. They weren't specific about whether they'd do that or my holistic MD would be doing that. They're going to be sending copies of everything to her anyway.

My friend and I ended the day by having dinner at the Culinary Institute. It was wonderful!!!! Hot gluten-free bread fresh from the oven. Da-rool! Also had the carpaccio, yucca tots which were good and kind of interesting, and a lobster dish to absolutely die for. Now nicely stuffed, we're in our jammies and winding down.

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Nyxie,

So glad the appointment went well and you have some answers! :D

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Nyxie, yea for some answers and a start to treatment. Wow, there are so many of us here with lyme.

Does anybody know something about Vitamin D? I just got a note from my allergist about my levels just recently done. He says they should be 60-70, and a minimum of 50. My level is 16 :huh:

Marshall thinks the low level is a response to disease and to supplement is not good. But others say it is important to supplement. Has anyone's docs given some guidance on this issue?

Sherry

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I have lyme!!!!! Chronic lyme at that. And probably babs and possibly bart. They ordered a whole lot more testing (12 tubes of blood worth). Getting titres and RNA tests done for both babs and bart through Igenex. Also being tested for all kinds of funky virus stuff, other TBDs, HLA gene thingies, and I don't really remember all what there was.

Wow, I'm very excited for you!!!! Not that you have lyme, but that the appointment went so well and it looks like you'll finally be able to start the journey to feeling well again!

Does anybody know something about Vitamin D? I just got a note from my allergist about my levels just recently done. He says they should be 60-70, and a minimum of 50. My level is 16 :huh:

Marshall thinks the low level is a response to disease and to supplement is not good. But others say it is important to supplement. Has anyone's docs given some guidance on this issue?

No guidance really, but my levels were below optimal so I've been mega supplementing. I think they'll probably want to retest my levels soon to see if it helped.

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Sherry, I didn't talk to my doctor about it, but my thought is that if it were warm here, I would be getting some vitamin D now by spending part of each day outside, but since I'm not, I'm taking a D3 supplement just from Dec.-March to get what I would otherwise get naturally.

If I weren't on mino, I'd actually think of getting one of Dr. Mercola's tanning beds, LOL.

Thank goodness for my note on here to Kassandra, she reminded me to buy the 5HTP yesterday and I slept till 8:45 today. :)

Nyxie, let us know how it goes starting the meds. Did he tell you to start one at a time and wait a few days to start the next? Will you be starting babs treatment?

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Thank goodness for my note on here to Kassandra, she reminded me to buy the 5HTP yesterday and I slept till 8:45 today. :)

:) I only remembered because you wrote it on here. I'm visual. :D

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Thanks,

I dont know anything about compounding pharmacies but will call around tomorrow. If this is something I need to do long-term I'm wondering if it costs more or does insurance cover it the same?

I have WellPoint (Anthem) health insurance and they do cover some of the compounded medications. You never mentioned what type of symptoms you are having?

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I have WellPoint (Anthem) health insurance and they do cover some of the compounded medications. You never mentioned what type of symptoms you are having?

Welcome greendog...by now you probably have realized that this thread is almost two years old. :P

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We got home about an hour ago. Whew! I'm beat and heading in to take a nap soon.

Thanks for all the congrats! :) I must say I'm glad to finally have a dx after all this time. Have mixed feelings about the lyme&co stuff but watcha gonna do?

They're not going to start treating anything else with abx until next month when the rest of the test results come back. They did start me on serrapeptase and enula for babs. I have to head up for the first three months or so and then can alternate with phone/office visits.

L was awesome! I really like her. She also seems to like what my holistic MD is doing for me, testwise anyway. L wants to up my dosage of thyroid meds based on my test results, which is nice. Prior to this, I was only on it to try to shrink the nodules. Will talk with her about it next month in more detail as I was too overwhelmed at that point to ask a whole bunch of questions.

L only wanted to put me on full Cowden, but Dr H felt that a more aggressive treatment was in order. I'm thankful for that as it'll kick the little buggy's butts faster... with steel toed boots. Not looking forward to herxing, but at least I sort of know what to expect. They didn't say anything about starting with one med and waiting a few days. I'm supposed to start everything at once.

They're also concerned about my adrenals. That was very welcome news. Finally, someone's looking at my labs and seeing the same things I've been seeing for almost a year now. I like my new holistic MD, but I really think the appts are too short to thoroughly go over everything we need to. My old holistic doc was ok, but missed a lot of things. We're gradually getting there, but not nearly quick enough for my taste or needs.

In addition to everything else, they've also started me on zeolite, Theralac, Ultraflora, DIM, OncoPlex and they want me to start taking JuicePlus. Good thing I know a gal on another board to sells the JuicePlus.

Gonna have to sit down and figure out how to schedule all this stuff, in addition to what I'm already taking.

Tomorrow's hida scan day. Have to be at the hospital by 7am. Will pick up the meds on the way home from there. No point getting them today since I can't take them tomorrow morning anyway.

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Glad you got back safe and sound Nyxie! Sounds like a very good appointment. Get some rest and hope the hida scan goes well tomorrow.

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Nyxie, sounds like you had a fantastic appt!! Congrats on your diagnosis, now you can start down that road to getting better :D

Nyxie, yea for some answers and a start to treatment. Wow, there are so many of us here with lyme.

Does anybody know something about Vitamin D? I just got a note from my allergist about my levels just recently done. He says they should be 60-70, and a minimum of 50. My level is 16 :huh:

Marshall thinks the low level is a response to disease and to supplement is not good. But others say it is important to supplement. Has anyone's docs given some guidance on this issue?

Sherry, rinne coined the phrase over a year ago "lyme clan", which has proven to be totally true :lol:

About the Vit D, I am supplementing with it (and have been since November). I think Mercola and others have said that low levels of Vit D can be connected to cancers and chronic illness.

Of course it is always best to get it from the sun, but that isn't possible in many climates, and year round.

I'm taking a liquid vit D supplement and extra cod liver oil for my vit D. I'll be retesting levels next week, so I am curious to see if it has made a difference

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Update from my LLMD appointment:

Basically my sense about the low levels on the testing is correct. The really good news, which was greatly pleasing to my doc, was that the tyrosine level was good. This is a measure of inflammation and damage, and it means that we are doing something right. The other good news is that the heavy metals really don't look too bad, and he says I won't need chelation for now, but just the chlorella and if at all possible, cysteine which should be adequate. Also he agrees a reverse osmosis water filter is very important; we are working on that possibility. He thinks I am getting lead somewhere.

The levels indicate both digestion and malabsorption issues. The fat absorption improvement is good, we are waiting for the results of some further absorptions tests.

The Spectracell levels were interesting; it measures the levels in the lymphocytes. They culture the lymphocytes on a special medium that contains or doesn't contain what they are testing and see what the lymphocyte response is.

Anyway, overall what is low are amino acids--the sulfur ones, antioxidants--Vitamin E, selenium, and glutathione, B vitamins, magnesium, Vitamin D.

There is some controversy about D, and one side would suggest that with the lyme, my 1, 25 D levels would go up, but that is not the case. They are way low.

So now I am taking a bunch of samples to Dr. E to do ART testing, to see which ones I can handle, that will supplement what I am still not getting enough of.

They also gave me IV magnesium and B's to see what my response to that might be. I may be doing magnesium injections.

My LLMD agrees with me that I need to plan to make a trip back mid-year to have the levels re-checked to make sure we are making headway on this.

Sherry

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Hey everyone

Great news Nyxie. You are on your way to great health. I hope we can all meet someday. That would be way cool.

Sherry glad you are not to messy with metals. :)

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Hey everyone

Hi Lisa!

I knew I forgot to post something, I totally remember that cast member on The Real World that had lyme disease, it was Real World Seattle and I think her name was Irene or Ilene.

It's been several years ago, but I remember watching it, and they were not sympathetic at all to her. They really didn't even make it a big issue. I think a couple of her roommates read up on it to be more informed about it, but that's really all the attention I remember them giving it.

You are right, she did decide to leave because she thought the environment wasn't good for her, but I don't think that was emphasized by the show .......and of course it was all overshadowed by her roommate Stephen slapping her :rolleyes:

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Thanks for the update Sherry!

You Dr is really covering all bases it sounds like.

Are you feeling better, more assured, about the direction of your treatments?

I meant to ask you last week, are you still on the charcoal? Same dose of 3 caps?

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the bioset woman randomly suggested i should see a pediatrician to get a bunch of basic things tested, does anybody think that's a good idea? the bioset woman seemed knowledgeable, and pediatricians deal with younger people and teens so i'm sure they're thorough

as i said, for some reason my thyroid is high, which is mostly likely because of something, but i had the free t3 and free t4 tested and they came back fine...but i never had antibodies...will antibodies basically explain that my bodies attacking the thyroid because of it being so weakened from sickness?

anyways, i want to have all my levels tested...minerals, vitamins, all the essential things.... what should i ask for? i want to make sure they're all checked and i get copies...i could probably get a provoked urine test out of it too, and some other basic things...anybody have any ideas of what i should get checked? just the basic things, lyme will be harder to find out obviously, but yeah...maybe he could order enterolab, i'm curious about the malabsorption

the whole reason i went to bioset was to get an outlook of my body, because it's a confusing puzzle, but i'm wondering what things i should get seen to help her out too

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