Omg...i Might Be On To Something

[happygirl]

x

[rinne]

Hi Laura, Hoffman told me that there is a particular antibiotic that doesn't treat the Lyme but unmasks it, I cannot remember the name. He knows I am not wanting antibiotics so he suggested staying on the Samento and then being retested. I think the protocol is to do the treatment and then stop it for two weeks before the test but I am not sure, if your doctor is doing this to check for Lyme for sure he should know and quite likely Rachel will know very soon too.

I hope you are having a wonderful Thanksgiving.

[Rachel--24]

Laura,

You should not be on antibiotics if you plan on testing for Lyme. Antibiotics can help with the diagnosis if a persons immune system is not producing antibodies....after antibiotics the immune system will start producing more antibodies which can then me measured in the test. The key word is AFTER antibiotic treatment. So if you took antibiotics you would then need to be off of them for 2 weeks or more before testing.

Why is your Dr. wanting to give you antibiotics?

[rinne]

Miamia, I am sorry if my last post seemed harsh. I am concerned for you, when I look at your photo I see a beautiful young woman who is very ill and it breaks my heart to think that you have been ill for so very long.

Laura,

You should not be on antibiotics if you plan on testing for Lyme. Antibiotics can help with the diagnosis if a persons immune system is not producing antibodies....after antibiotics the immune system will start producing more antibodies which can then me measured in the test. The key word is AFTER antibiotic treatment. So if you took antibiotics you would then need to be off of them for 2 weeks or more before testing.

Why is your Dr. wanting to give you antibiotics?

Yes, why antibiotics?

Hoffman said many doctors treat with a short course of antibiotics if the test is Negative and then you stop the antibiotics for two weeks and are tested again.

Rachel, I'm confused about why you say you should not be on antibiotics if you plan on testing for Lyme?

Did you mean taking antibiotics when you are tested?

[Rachel--24]

Rachel, I'm confused about why you say you should not be on antibiotics if you plan on testing for Lyme?

Did you mean taking antibiotics when you are tested?

Rinne...yeah...I meant that the tests give false negatives WHILE on antibiotics. I think Laura plans on doing Igenix testing soon so if she goes on antibiotics now....she will have to put the testing on hold.

Sorry...I think I didnt make sense in my post.

[rinne]

Rinne...yeah...I meant that the tests give false negatives WHILE on antibiotics. I think Laura plans on doing Igenix testing soon so if she goes on antibiotics now....she will have to put the testing on hold.

Sorry...I think I didnt make sense in my post.

I figured we were basically saying the same thing.

It is what makes me curious about the salt/c because it is also killing the spirochetes, I had been taking 9 grams of salt per day and 5 grams of Vitamin C for three weeks prior to the Igenex test. My friend suggested calling Nick Harris at Igenex and asking him and I think I will be doing that soon. I just want to do more research so I know exactly what questions to ask him.

[miamia]

Miamia, I am sorry if my last post seemed harsh. I am concerned for you, when I look at your photo I see a beautiful young woman who is very ill and it breaks my heart to think that you have been ill for so very long.

Yes, why antibiotics?

Hoffman said many doctors treat with a short course of antibiotics if the test is Negative and then you stop the antibiotics for two weeks and are tested again.

Rachel, I'm confused about why you say you should not be on antibiotics if you plan on testing for Lyme?

Did you mean taking antibiotics when you are tested?

Rinne-

Don't worry at all about what you call" harshness" I take it as compassion and I am touched by it. when I had the lyme test done I had alot of tests done and I think my malabsorbton was so bad we tried to address that and the lyme test kind of got looked over- I know it is not a good excuse but I have a feeling that is what happened. I was angry at first and even last night but overall I am just thankful I brought it up and he was so receptive to moving forward with it and taking what ever steps we can to find out what is going on. I know this should have nbeen done in May but if I think about it that way I will just mull over how bad the last few months have beena nd that will just cause me to be up set so for now I am going to just try to be thankful for you guys bringing all this info to my attention and for the tests that are being done now. I hop this makes sense.

The antibiotic test is helpful but most people suggest having the igenix test and others done first. I know for me I would rather do a test where I don';t have to take anything that can be potentiaally harmful to me first.

Miamia

Rachel and rinne-

What I am wondering after reading everything you guys posted last night ids would certain people say I ahve lyme now based on my igenix results alone?

Laura-

I hope you had a good thanksgiving!!

[happygirl]

x

[dlp252]

if I find out I had lyme and had a real diagnosis that would be enough for me- I woulden't want any gifts- I would have e\verything I needed!!

Miamia

OMGosh, wouldn't that be a gift indeed!!!

[rinne]

Miamia, I am so glad you understand. And yes, you are competely right to want to move forward now and given that you have a relationship with this doctor and he is receptive, that is IMPORTANT, then you are wise to not hold any anger.

I feel the most important lesson I am learning from this is how vital it is for me to take charge and read my own test results. A friend had been emphasizing that for MONTHS before I asked for my test results from just regular blood work and discovered how low my Vitamin B levels were. Hoffman wants me to take 4000 Units of Vitamin D a day for six weeks because of how low those levels are and I wasn't even paying attention.

Sometimes I just find it so scary to look and see how messed up my body is, I'll think I should know more about some problem and then I don't look. Fortunately Rachel, or someone else here is looking and I am learning.

Dr. Jones, who is a Pediatric Lyme specialist, would diagnose you with Lyme on the basis of your current results. That was the part that Rachel highlighted about the 18kda band. It might be a good article to take to your doctor. The 18kda band is the trunk of the elephant, if you have it, you have Lyme.

[dlp252]

Donna....everything sounds so yummy.

I'd be down about the pumpkin cheese pie too. My favorite deserts are cheesecake and pumpkin pie....I've never had them *together* in one pie though.....OMG...it sounds GOOD!!

Yep, I tried NOT to look at the pie too much, lol, but it LOOKED really yummy. The dog licking almond butter off my fingers helped take away the downness though.

Donna-

so glad you had a good thanksgiving!!! Mine started out really badly- I ahd a bit of a breakdown but I recovered- I can never stay sad when I am sround my neice and nephew- Ny meal tasted really good, unfortunatly I wasen't feeling well but the good news is it didn't make me any sicker- and I had all this unusual (for me unusual) things

The only things that made me sad I coulden't eat where these homemade biscuits that were steaming hot when my mom served them and my moms pecan pie- which looked like it should have been on the cover of a marthat stewart magizine- and I know from the past tastes as good as it looks

Miamia

Wow, I think it's great you didn't get sicker, but sorry you were not well to begin with. This whole thing just sucks! Those homemade buscuits and pie would have tortured me, lol.

[miamia]

Miamia, I am so glad you understand. And yes, you are competely right to want to move forward now and given that you have a relationship with this doctor and he is receptive, that is IMPORTANT, then you are wise to not hold any anger.

I feel the most important lesson I am learning from this is how vital it is for me to take charge and read my own test results. A friend had been emphasizing that for MONTHS before I asked for my test results from just regular blood work and discovered how low my Vitamin B levels were. Hoffman wants me to take 4000 Units of Vitamin D a day for six weeks because of how low those levels are and I wasn't even paying attention.

Sometimes I just find it so scary to look and see how messed up my body is, I'll think I should know more about some problem and then I don't look. Fortunately Rachel, or someone else here is looking and I am learning.

Dr. Jones, who is a Pediatric Lyme specialist, would diagnose you with Lyme on the basis of your current results. That was the part that Rachel highlighted about the 18kda band. It might be a good article to take to your doctor. The 18kda band is the trunk of the elephant, if you have it, you have Lyme.

Rinne-

I usually am good about reading my tests but I guess not always- when it somes to tests with lots of numbers and things I completly feel like go over me head I guess I kind of get overwhelmed but I should not let that deter me from tryign to understand as much as I can. I alread printed out the article and rachels info from last night and I am going to try to pass that along to my doc maybe even before my next appt.

[dlp252]

Miamia, I am SOOOO not good at looking at tests with lots of numbers, lol.

I'm feeling really good so far today so I think I'm fine after dinner yesterday. The only thing I ate which I shouldn't have was a little fresh crab that my cousins brought, but I didn't have much.

I slept better again last night...woke up a few times but went back to sleep each time. Perhaps the true test of the new supplement (which contains valerian root) will be on MONDAY, lol.

Oh, and I also got an email response from the BioSET lady...basically just answering my question about the cost of the first appointment and what all they test for--I had mentioned Lyme in my question to her, but she didn't mention it in her email...Rachel was it any extra cost wise for them to test for they Lyme stuff?

Now I just have to decide when to go. In some ways I'd like to do it now, but then won't be around for a few weeks while on vacation.

I am being lazy today, lol. I was planning on doing some grocery shopping, but decided I have enough to last me the week so am just going to stay in and lay on the couch, maybe make some bracelets, which I haven't had any time to do in weeks. My friend wants me to bring a bunch of them to church on Sunday...I think either she wants to buy some for gifts, or once she mentioned she wanted to take them to her ladies club because they like to buy stuff, lol. Hope so cuz with all these medical bills, I really need the money. I got my credit report on Wednesday, and while my credit and score is very good, I have a huge amount of outstanding credit and it's a bit scarey.

[miamia]

Miamia, I am SOOOO not good at looking at tests with lots of numbers, lol.

I'm feeling really good so far today so I think I'm fine after dinner yesterday. The only thing I ate which I shouldn't have was a little fresh crab that my cousins brought, but I didn't have much.

I slept better again last night...woke up a few times but went back to sleep each time. Perhaps the true test of the new supplement (which contains valerian root) will be on MONDAY, lol.

Oh, and I also got an email response from the BioSET lady...basically just answering my question about the cost of the first appointment and what all they test for--I had mentioned Lyme in my question to her, but she didn't mention it in her email...Rachel was it any extra cost wise for them to test for they Lyme stuff?

Now I just have to decide when to go. In some ways I'd like to do it now, but then won't be around for a few weeks while on vacation.

I am being lazy today, lol. I was planning on doing some grocery shopping, but decided I have enough to last me the week so am just going to stay in and lay on the couch, maybe make some bracelets, which I haven't had any time to do in weeks. My friend wants me to bring a bunch of them to church on Sunday...I think either she wants to buy some for gifts, or once she mentioned she wanted to take them to her ladies club because they like to buy stuff, lol. Hope so cuz with all these medical bills, I really need the money. I got my credit report on Wednesday, and while my credit and score is very good, I have a huge amount of outstanding credit and it's a bit scarey.

Donna-

good for you - relax, make bracelets, - sometimes I fel like i spend all my time grocery shopping!!! Today I ahve to go way out of my way to buy special ingredients- so frustrating. I was laughing when I read your post- becasue most people are like I screwed up I ate 5 pumpmpkin pies and you cheated by eating fresh crab and I was anxious cause I ate baked sweet potato and apples- There is somethign very humorous about this.

[CarlaB]

Hi everyone! I successfully fed 13 people for Thanksgiving dinner yesterday with Morgan's help. Because I cooked it all, it was ALL safe!!! That's the advantage of having it here. I just went into my living room and it looks like there was a party in there yesterday!!

Okay, gotta go, taking Morgan and Luke to Starbucks, but wanted to say good morning to you all first .... Morgan says hi, too.

Chat with you later.

Oh, you don't know Luke, but he says hi, too. We'll take a picture at Starbucks for a temporary avatar (we all just rolled out of bed and put on sweats )

[rinne]

Miamia, my idea of wild these days is a cup of coffee. I haven't had any maple syrup for weeks, I stand there and I think Happy Bugs mmmm Healthy Me, so far it seems to work.

Donna, that sounds like a nice day. Enjoy. You inspired me to get out my quilt project with the beading on it, I had tucked it away for the summer and I am delighted to find I'm excited about finishing it. Thanks.

Carla, how fun.

[dlp252]

becasue most people are like I screwed up I ate 5 pumpmpkin pies and you cheated by eating fresh crab and I was anxious cause I ate baked sweet potato and apples- There is somethign very humorous about this.

You're right...it IS very humorous!

Hi everyone! I successfully fed 13 people for Thanksgiving dinner yesterday with Morgan's help. Because I cooked it all, it was ALL safe!!! That's the advantage of having it here. I just went into my living room and it looks like there was a party in there yesterday!!

Okay, gotta go, taking Morgan and Luke to Starbucks, but wanted to say good morning to you all first .... Morgan says hi, too.

Chat with you later.

Oh, you don't know Luke, but he says hi, too. We'll take a picture at Starbucks for a temporary avatar (we all just rolled out of bed and put on sweats )

Hi to Morgan and Luke!! Wow, may I just say that I am not worthy, lol. You cooked for 13 people!! Wow, fairly amazing actually. I get a bit stressed if I have to make something for anyone other than myself, lol.

Donna, that sounds like a nice day. Enjoy. You inspired me to get out my quilt project with the beading on it, I had tucked it away for the summer and I am delighted to find I'm excited about finishing it. Thanks.

Oh good! Course, I haven't ACTUALLY done anything yet, but it't only 8:40 a.m. here, so I have a little time left, lol. I DID do a leg workout so the day wouldn't be entirely slug-like.

[CarlaB]

Thirteen is not that incredible when you consider that I cook for 8 every night!!!! Thanksgiving is easy because then I have food for several days, which makes it so I don't have to go to the grocery and cook for while. Two days of cooking and a few of relaxing. I was a little stressed about it because I didn't know if I'd have the energy. But Morgan was a big help. Then my brain left my head as the complicated part came up (the timing of everything), so I borrowed Morgan's for a while.

We had a blast sitting around at Starbucks ... I'll change my avatar in a minute. Then I went to buy some new shampoo ... they added wheat and oats to Alterna ... jerks ...

[Rachel--24]

Rachel and rinne-

What I am wondering after reading everything you guys posted last night ids would certain people say I ahve lyme now based on my igenix results alone?

Yes...there are some Dr.'s who will diagnose you with Lyme based on those test results. I imagine if you were to post your results on the Lyme message board they would tell you that you have Lyme and need treatment.

Personally. I think you have Lyme but I'm the type to play things safe and more testing certainly isnt going to hurt.

If the new tests are negative I would still pursue this. Its been 6 months since you got those results so your immune system could be not producing as many antibodies....your immune system might be weaker now than it was in May....that could affect the results. Lyme is really hard to diagnose even when someone is really sick from it.

I read so many stories on the Lyme board of people seeing a tick, pulling it off, getting a bulls-eye and then getting REALLY sick....and *still* they dont test positive for Lyme....but they know they have it. Most of them... if they continue testing do eventually get a positive test.

I was reading a little yesterday about the C D 57 test (on the lyme board). I dont have a good understanding yet...I still wanna look into that. If my co-infection test is negative I'll look into other testing methods.

I understand about just wanting to be happy with possibly getting some answers and not wanting to dwell on what was missed or things that will only cause anger and frusteration. Its a good attitude to put it behind you and move forward.

I'm worried in the same way that Rinne is worried....that this Dr. doesnt know alot about Lyme. Its hard for me to imagine that he could be familiar with lyme testing and then not be curious about your results. That worries me. If you have Lyme I would want you to be in good hands....a Dr. who knows the proper steps to take to get you well again. I hope this guy wont make anymore mistakes like this but the *main* thing is that you learn what you can so that you can be more in control over things. Remember....knowledge is power. As long as you get as much info. as you can you'll be ok.

Rinne-

I usually am good about reading my tests but I guess not always- when it somes to tests with lots of numbers and things I completly feel like go over me head I guess I kind of get overwhelmed but I should not let that deter me from tryign to understand as much as I can. I alread printed out the article and rachels info from last night and I am going to try to pass that along to my doc maybe even before my next appt.

Mia,

If you're ever not sure of something or how to read some test results....dont be afraid to post your results or your questions....someone will help you. Thats what I've always done when I dont understand stuff...it seems like there's always someone who's willing to help.

l...Rachel was it any extra cost wise for them to test for they Lyme stuff?

As far as I know there was no extra cost....you can also bring in any supplements or meds you want to have tested.

Making bracelets and lying on the couch sounds sooo peaceful and relaxing to me. I've been up since 4...had to go in to work....filling up milk and eggs. Not fair.

sometimes I fel like i spend all my time grocery shopping!!!

OMG....This is me for the past year. Grocery shopping...all of a sudden its taken over my life. AND...I only eat 5 things!!!

Hi everyone! I successfully fed 13 people for Thanksgiving dinner yesterday with Morgan's help. Because I cooked it all, it was ALL safe!!! That's the advantage of having it here. I just went into my living room and it looks like there was a party in there yesterday!!

Carla...YAY...thats great!! I'm glad your dinner was a success.

Hi to Morgan and Luke.

[CarlaB]

OMG....This is me for the past year. Grocery shopping...all of a sudden its taken over my life. AND...I only eat 5 things!!!

Same here!! Every day!! It's the focus of my day ... work out (a little), sauna, grocery. A little mundane.

Oh -- new avatar. Now you've "met" Luke!

Carla...YAY...thats great!! I'm glad your dinner was a success.

Thank you. I WAS just going to have a quiet dinner with "just" the 8 of us ... but at least I wouldn't have had to worrry about cleaning the house. But, MONDAY Adam invited his whole family over! They sort-of invited themselves! I was worried that I wouldn't be able to pull it off ... Thanks, Rhonda, for the salt idea! I also started taking alpha lipoic acid, which is supposed to gently help with the mercury ... I take it three times a day and it seems to be helping, or else I'm working off adrenaline and will crash soon! Anyhow, FIL is taking all the adults of the family to Maggiano's Saturday.

My BIL just got engaged. He had been engaged to this woman before ... she's from Brazil, they did all the paperwork, got her up here, she had culture shock, well she's adjusted and has moved back up here with him. Anyhow, it was her first Thanksgiving! Fun. She speaks no English ... but I speak Spanish and she understands it. She's learning it though.

[nikki-uk]

Same here!! Every day!! It's the focus of my day ... work out (a little), sauna, grocery. A little mundane.

OMG you described my life!!( minus the sauna!)...and I'm not even ill!!??

Oh -- new avatar. Now you've "met" Luke!

What a handsome lot you are!!

[CarlaB]

OMG you described my life!!( minus the sauna!)...and I'm not even ill!!??

What a handsome lot you are!!

Thanks

[DingoGirl]

Yep, I tried NOT to look at the pie too much, lol, but it LOOKED really yummy. The dog licking almond butter off my fingers helped take away the downness though.

Doggies licking your fingers.....I have that every day here. I don't know what I would do without my girls, and they were allowed to go to my brother's (their stinkiness usually deters social invitations :lol

Donna-

good for you - relax, make bracelets, - sometimes I fel like i spend all my time grocery shopping!!! Today I ahve to go way out of my way to buy special ingredients- so frustrating. I was laughing when I read your post- becasue most people are like I screwed up I ate 5 pumpmpkin pies and you cheated by eating fresh crab and I was anxious cause I ate baked sweet potato and apples- There is somethign very humorous about this.

very humourous indeed! and crazily sad......

Donna, that sounds like a nice day. Enjoy. You inspired me to get out my quilt project with the beading on it, I had tucked it away for the summer and I am delighted to find I'm excited about finishing it. Thanks.

That sounds very good, Rinne. I need to pull out a project today, but was thinking of a very quick hike to an old climbing spot with the dingos, it's just SO cold here today! (well, we are wussies in California, it's probably 50 degrees and that is freezing to me, to go hiking )

Nice to see everybody! Laura, glad you had a good day.....how are you feeling these days, eating foods? Rachel, HEINOUS that you had to go into work. Oh, keep meaning to tell you, if I lived closer, I'd set up your online bill-pay. Seriously, it could take you only half an hour.....just enter the major ones like Macy's, PG&E, SBC, and major credit cards....they are already in there, and you just have to enter your acct. numbers and address! So easy.....then just CLICK each month......oh you would love it but I know it sounds daunting to do it.

Well, must figure out what to do wtih today. I am dreading work tomorrow..... in that crazy place that is more focused in making their paperwork OVERLY thorough and counting back change than making it a pleasant experience for customers. They are going to beat the personality out of me, I guess..... we will see.

Carla, cute pic!

Miamia, so glad you had fun with your family, and your niece and nephew....they are lucky to have an aunt likeyou.

[miamia]

Rachel-

thank you so much for your support and your willingness to help me with my results. if i find out I have lyme my doctor and I discussed bringing in a 3rd party who is an expert- so I plan to pursue that. My first step right now is to get these tests done on Monday after I see the results I will plan my next move- If they are negative I think I still may send them to another source to ahve them look at them. I am not gonna sweep this under the rug- or miss anythign this time!!!!

Susan-

When I am by myself I get sad about how ridiculous the foods I am scared of , but when I come here and hear other people have the same fears O( not always same foods) Its makes me feel more" normal "for being so "different" and then I can see humor. ( but alone still sad)

[rinne]

Miamia, I am glad that you will pursue this.

I'm home from my sauna and I think it is really making a difference. Today my eyes didn't burn at all and they have the past four saunas. We are definitely getting one.

Susan, if your work place doesn't appreciate you then it will be their loss, please trust that. As to all their obsessiveness with a variety of receipts, I know I have a really hard time absorbing a whole lot of information at once and so I find it helpful to write it out in simple steps and that over time I do learn it.

I talked to Lymetoo (suggested she drop by for a visit) and she thinks my test is positive for Lyme. I am feeling much better now, I am back to feeling smart and smug.

A friend came by for coffee and we talked about the community we want to develop and I'm really excited about some of the possibilites, especially now that I have Rachelville for a model.