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Mommas with Lyme Disease <3 - Page 16

post #301 of 369
it really will vary from person to person. You need to start really low and work your way up. The die off can be tremendous and incapacitating for some, so you just need to watch out. We have been supplementing iodine for around 5 years now. I did a test to determine my needs and started high (50 mg) with no issue. Most can start around 12.5. There are those that can't do that and have to cut it in half.

Always good to support adrenals and thyroid with lyme.
post #302 of 369
I thought it was supposed to be better to start with the adrenals and then work on the thyroid? Is that not true?
post #303 of 369
no, I agree that it's best to start with adrenals. I don't see iodine as necessarily "targeting" the thyroid though...our bodies need it. Everyone will have different takes, that's for sure. And the reality is the adrenals SHOULD be worked on first because our bodies need iodine...but the die off can really be a stressor. I just don't think the adrenals need to be all there before iodine is intro'd, personally.
post #304 of 369
Ok, devil's advocate. So I have a gene that necessitates that I take a *ton* of b12. It was suggested to me that until I work on that then doing adrenal and/or thyroid stuff is just a bandaid.

What do you think?

Also, did my email come through? It was kind of big.
post #305 of 369
yes-we're going over everything tomorrow...we're meeting first thing.

I think that you likely need to be taking that B-12. I don't necessarily think that means cease all other supportive measures. What form are you doing the B-12 in? Injections? Sublingual? Patches? How often? Is it making a difference?

People don't generally find out about that type of thing until treatment is getting them nowhere. Partly because testing is expensive (especially if you are covering a bunch of bases) and no one is the end all be all and gives all the answers. You follow what path makes sense and when things aren't moving you look in a different direction. There is also the reality that different people will be responsive to different things for more than just genetic reasons.

I know...no one answer.
post #306 of 369
Quote:
Originally Posted by Panserbjørne View Post
yes-we're going over everything tomorrow...we're meeting first thing.

I think that you likely need to be taking that B-12. I don't necessarily think that means cease all other supportive measures. What form are you doing the B-12 in? Injections? Sublingual? Patches? How often? Is it making a difference?

People don't generally find out about that type of thing until treatment is getting them nowhere. Partly because testing is expensive (especially if you are covering a bunch of bases) and no one is the end all be all and gives all the answers. You follow what path makes sense and when things aren't moving you look in a different direction. There is also the reality that different people will be responsive to different things for more than just genetic reasons.

I know...no one answer.
Well this is a new development. I think I got the results on Saturday. So I'm still collecting opinions & digesting the information. I also don't really understand the detox gene results so I wasn't sure how that impacted the b12 thing.

Anyhow, I had been taking a sublingual b12 & MegaFood balanced b complex supplement. I hadn't really noticed anything great with that. I also started OraKidney & Ora-Adrenal a week or two ago.

This week I started ramping up on hydroyb12 megadrops (from Yasko). Ramping up really slow & I feel ok but DS is a little out of control. Not sure its related. I'm only doing a drop over the course of the day, which is 1,000mcg.

Today I just got the methyl b12 megadrops which I'm going to start in another week or so.

I'm thinking about a patch but don't know much about them. Ditto on the shots. I don't want to do anything too drastic until I'm able to wean DS. I think its going to require a weekend away.
post #307 of 369
ah, I see. I assumed that you went through your practitioner up there and they put you on a regimen...I didn't understand that. So just so I'm aware...these were all tests you requested and don't have help with?
post #308 of 369
Just talked to the osteo last night, DD2 has lyme too, or at least has been exposed to it (over a year old). He said he'd like her to go on abx for a month. If she gets herx reactions then it's still active. If there's no change, then she kicked it herself.

And for me, he wants me to take a break from the natural stuff for a month (teasel, cat's claw, resveratrol) and just do the abx to give my body a break. Then start up again. Not sure whether giving my body a break means I can start other things. But I've started cell salts today. I also need to start chelating. Not sure whether I should do that now or wait the month.
post #309 of 369
why does your practitioner say that the exposure was over a year ago?

My Dr doesn't understand the tests so is no help with that sort of thing.

Also have you been on abx continously? I don't understand the logic of stopping herbs to give your body a break but continuing abx. (I'm just doing herbs and haven't done abx yet and hope to avoid them.)
post #310 of 369
Quote:
Originally Posted by kjbrown92 View Post
Just talked to the osteo last night, DD2 has lyme too, or at least has been exposed to it (over a year old). He said he'd like her to go on abx for a month. If she gets herx reactions then it's still active. If there's no change, then she kicked it herself.

And for me, he wants me to take a break from the natural stuff for a month (teasel, cat's claw, resveratrol) and just do the abx to give my body a break. Then start up again. Not sure whether giving my body a break means I can start other things. But I've started cell salts today. I also need to start chelating. Not sure whether I should do that now or wait the month.
I'm not sure how he knows its over a year old. I thought it went "chronic" after several months. After that you can't tell how long you've had it. You either have the "acute" antibodies or the "old" antibodies indicating a prior infection.

Why doesn't he want you to take a break from abx too? Aren't they a burden as well? I guess that sounds a little odd to me as abx do things to the body, just like the natural stuff.
post #311 of 369
Quote:
Originally Posted by Pattyla View Post
why does your practitioner say that the exposure was over a year ago?

My Dr doesn't understand the tests so is no help with that sort of thing.

Also have you been on abx continously? I don't understand the logic of stopping herbs to give your body a break but continuing abx. (I'm just doing herbs and haven't done abx yet and hope to avoid them.)
Quote:
Originally Posted by chlobo View Post
I'm not sure how he knows its over a year old. I thought it went "chronic" after several months. After that you can't tell how long you've had it. You either have the "acute" antibodies or the "old" antibodies indicating a prior infection.

Why doesn't he want you to take a break from abx too? Aren't they a burden as well? I guess that sounds a little odd to me as abx do things to the body, just like the natural stuff.
He said the IgG tells one and the IgM tells the other on the Igenex lyme test - recent or over a year old.

I told him that when I went off all the natural stuff for my surgery (had to be off for 5 days before/after but stayed on the abx) that my back felt better than it had. I thought that meant that the abx weren't really doing anything and that the natural stuff was. But he said sometimes it was better to take a break and let some of the detox stuff out. I started cell salts this morning (I'll also post on the cell salts thread) and my back feels really good. Placebo effect?
post #312 of 369
Hey, take feeling better any way you can get it.
post #313 of 369
I read that for Lyme the one that is supposed to show recent (I cant keep the different ones straight) is commonly positive in people with chronic lyme. That was the one I had positive. No bands at all on the other one. (I have also read that is common).
post #314 of 369
Quote:
Originally Posted by Pattyla View Post
I read that for Lyme the one that is supposed to show recent (I cant keep the different ones straight) is commonly positive in people with chronic lyme. That was the one I had positive. No bands at all on the other one. (I have also read that is common).
That's so odd because I had nothing on the "recent" test and only a few bands on the chronic. My test was deemed "inconclusive" but I"m assuming I have it.
post #315 of 369
the fact remains that these are not super accurate tests regardless....you go with what you know is happening in the clinical picture along with the tests. You really can't rely on them alone except for in cases of acute infection (when a positive is generally a positive.) Doesn't work the other way though...a negative can be a false negative and often is.
post #316 of 369
They aught to just say it's either positive or undetermined.
post #317 of 369
All 3 of us had positive bands on both. I still have to get a copy of DD2's test next time I go into the office (for the summer, we've been doing phone updates with the doctor).
post #318 of 369
Joining you all here. I have been sick with various things for about 4 years now but have been feeling extra fatigue for the last 2 months or so. I got the western blot last week and have 2 reactive IGM bands so a positive test. So confused. I do really terrible with abx. I've had 100's of tick bites over the last 3 yrs so I have no idea if this is active or not. Any points in good directions would be much appreciated. I am feeling really ineffective at everything right now. My dr wants me to make a decision on taking a 4-8 week course of either doxycyclene or amoxicilian. I am bfing a 21 month old. I will go back and read the rest of the thread.
post #319 of 369
Quote:
Originally Posted by farmerjess View Post
Joining you all here. I have been sick with various things for about 4 years now but have been feeling extra fatigue for the last 2 months or so. I got the western blot last week and have 2 reactive IGM bands so a positive test. So confused. I do really terrible with abx. I've had 100's of tick bites over the last 3 yrs so I have no idea if this is active or not. Any points in good directions would be much appreciated. I am feeling really ineffective at everything right now. My dr wants me to make a decision on taking a 4-8 week course of either doxycyclene or amoxicilian. I am bfing a 21 month old. I will go back and read the rest of the thread.
Welcome to the group! Sending a big hug your way.

You will find many differnt routes here. I didn't do abx for lyme and am glad, but others feel best with abx. It is good to go with your gut. I am bfeeding a 1 yr old and he is being treated as there is no proof that I cannot pass it lyme too. Or maybe my LO has immunity from the milk? That would be nice.
post #320 of 369
that would be nice!
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