Omg...i Might Be On To Something

[CarlaB 22]

Kassandra, I wish I could be more of a help in getting you to the LLMD. I'm sure you've told your mom about us and how most of us here have your same problems and are getting better?

Will your dad foot the bill? It seems that her concern is the expense of a doctor that is not covered by insurance, is that right?

Maybe you can print out the Dr. B guidelines for her to read ... would that help? At least point out the section of symptoms and that says a bullseye rash is diagnostic.

Tell her that if it's not Lyme, it will not have been for nothing .... well, I think it is because of the rash ... but it still would not be for nothing because you would have ruled it out just like you are ruling out each other illness by seeing a specialist for that particular illness ... just as Sherry has said.

[melmak5 2]

Kassandra - maybe you can get your mom on your side if you say that the LLMD can help to coordinate all of these other specialist and have some perspective and look at your WHOLE body, rather than just an organ or system. Treating your stomach and not the rest of you isn't going to solve this and you are going to wind up in a maze of specialists. You need someone who is medically competent to help wrangle in all of this data.

[Green12 2]

Kassandra,

I don't have any advice, I just wanted to say I relate to your situation and I feel for you. It's hard to know what to do, and when you aren't getting much help from the Drs. you have sought out it's even more stress and frustration on top of already being so overwhelmed with mounting health issues and the day to day of being sick.

I am not advising you what to do or what not to do either way, but what if you just set up a consultation with the LLMD to see if he/she would even be a Dr you could work with, if he/she listened to you, addressed your main issues and concerns?

Am I wrong, but LLMDs treat more than just lyme, right?? If you end up getting a negative result all would not be lost if it's someone who will help you.

Just wanted to wish everyone a Happy Thanksgiving, I might not be on much in the next few days while I slave over a hot stove in the kitchen cooking, cooking, cooking away

If I get chance I'll check in, but if not everyone have a good one and I'll see you soon

[AndreaB 1]

Just wanted to wish everyone a Happy Thanksgiving,

Back at you.

[mftnchn 1]

Happy Thanksgiving everyone! I get to not slave over a hot stove because I have a lady who cooks for me, who is so very very sharp she has learned all of my holiday cooking recipes. She had never cooked anything western before working for me, but has picked it up really fast. She has now taken all the gluten-free cooking in stride as well and makes everything for me. So I do the planning but am very very blessed to have her help. I am inviting a young person here from the USA who is celiac, just met her recently.

[jerseyangel 413]

Just wanted to wish everyone a Happy Thanksgiving

Same to you, Julie--have a very Happy Thanksgiving

[miamia 0]

I did a three day random stool collection. They could name the specific bacteria that was there.

I understand your frustration ... I personally think you should get the IGeneX testing, then go to the LLMD .... I just don't think these other docs are going to fix anything. You need the iron, but other than that, I don't think they can help you .... you had the bullseye rash .... they'll treat the symptoms forever but never get to the underlying problem.

Carla-

do you remember which place did your stool test?

[miamia 0]

Hey everyone-

I have not posted in a while but i have been reading along

Yesturday i had a doctors appt. and chelation. So my doctor wants me to focus on clearing my pathways so I detox better and strengthen my immune system. He wants me to start taking MSM for sulfar and HCL for digestion he also wants me to add this other probiotic besides the one i am taking because it contains HSO's (soil organisms). I am gonna do this for one , two weeks and then we will talk.

For the past 2 weeks I have not gotten the glutathione. And there is a huge improvement in how i feel after chelation. My doctor said it is alright that i am not getting it right now.

Ok that is a short update i know there is more but i just wanted to check in I miss you guys and felt weird that i haden't posted in so long.

[jerseyangel 413]

Hi Mia,

Thanks for the update. I've missed seeing you post--I don't post much, either, but like to keep up on everyone.

I had a 3-day stool test done a couple years ago--before I was diagnosed. My GP ordered it and it was done through Quest. It took about a week to get the results.

[miamia 0]

Kassandra-

In my opinion it is never a waste to get further testing done or meet with a different doc who has a different approach. Even if it comes out negative at least you ruled something out. There was a time I would never have suspected i had metal toxcicity , but i got the testing and it turns out to be one of my main issues. And like someone else said even if it turns out you do not have lyme the LLMD may be able to point you in a helpful direction. You should always explore all your options when it come to your health. Leave no stone unturned(or whatever that expression is)

[miamia 0]

Hi Mia,

Thanks for the update. I've missed seeing you post--I don't post much, either, but like to keep up on everyone.

I had a 3-day stool test done a couple years ago--before I was diagnosed. My GP ordered it and it was done through Quest. It took about a week to get the results.

Patti-

I have had multiple stool tests done through great smokie- now under some other name, but there is some other more extensive one my doc wants me to have it covers way more parasites, etc. but they don't allow it iin NY for some stupid reason he is gonna see if he can find an out of state doctor to help me get it done. I was wondering if the one carla got was through this place.

[CarlaB 22]

Miamia, I'll have to look it up, I can't remember. My doc is in NY, so it must not be the forbidden lab! I remember using Doctor's Data, but that might have been only the urine test ...

If the probiotic with soil organisms is Primal Defense ... it's not gluten-free.

Sherry, gosh, with a lady cooking for you, will you ever want to return to the US? I have a friend who is Mexican married to an American. They lived in Mexico for a long time, but have lived in the US for the past few years. She said the biggest adjustment was not having the help everyone has in Mexico.

I cook all of Thanksgiving dinner ... but it doesn't take me long .... we make a couple dishes on Wed. the rest on Thurs. .... but I don't bake, so maybe that's why it's easier.

[CarlaB 22]

Mia, it was Genova Diagnostics.

[mftnchn 1]

Yep I am very spoiled, and not only that, I'll have a big learning curve when I get to the US and have to do it all myself!

Mia, good to hear things are going well and you are making progress. Glad you checked in!

Isn't Genove the new name for Great Smokies...I seem to remember there was a name change somewhere there.

[CarlaB 22]

Yes, I Googled it and it was Great Smoky ... i paid for the testing.

Well, I have electricians, plumber, painter, and guys working on my stove today ... that is all good news except for the country music that's about to make me pull my hair out!!!! I've got to get out of here ..... things bother me much more when I'm herxing .... the guys working on the stove have to vent it through the roof, so they're in my room upstairs, so there's no privacy! I might have to get my earplugs ...

[dlp252 5]

My 3-day stool test was with Doctor's Data (the last one at least...the one last year I think might have been the same place...not sure).

Happy Thanksgiving Julie, and to everyone else who may not be on much in the next day or two.

I am so glad this forum is here...otherwise I;d be pretty lonely these days...lol! I am glad you all believe in me!

Now, if only I could get my mom on board.

I'm glad you're finding some comfort here. I think your mom will come around...I seem to remember Rachel saying that her mom (hi Cheryl, lol) did not always "believe" in the less mainstream stuff, but now sees the improvement and is fully on board.

Am I wrong, but LLMDs treat more than just lyme, right?? If you end up getting a negative result all would not be lost if it's someone who will help you.

No you are not wrong. An LLMD is a medical doctor whose specialty is lyme. However, I think that most of the people who have seen an LLMD on this thread have had their LLMDs test for a BUNCH of other stuff as well as lyme. They seem to be really interested in finding out the cause of your symptoms whether or not it is lyme. My doctor was almost shocked that I DID have lyme, lol...I think he was truly expecting it to be something else.

Happy Thanksgiving everyone! I get to not slave over a hot stove because I have a lady who cooks for me, who is so very very sharp she has learned all of my holiday cooking recipes. She had never cooked anything western before working for me, but has picked it up really fast. She has now taken all the gluten-free cooking in stride as well and makes everything for me. So I do the planning but am very very blessed to have her help. I am inviting a young person here from the USA who is celiac, just met her recently.

Can you say JEALOUS, lol!

For the past 2 weeks I have not gotten the glutathione. And there is a huge improvement in how i feel after chelation. My doctor said it is alright that i am not getting it right now.

Ok that is a short update i know there is more but i just wanted to check in I miss you guys and felt weird that i haden't posted in so long.

Don't worry about posting...just glad to hear from you when you can! I'm glad you are feeling better without the glutathione!

[AndreaB 1]

Happy Thanksgiving everyone! I get to not slave over a hot stove because I have a lady who cooks for me, who is so very very sharp she has learned all of my holiday cooking recipes. She had never cooked anything western before working for me, but has picked it up really fast. She has now taken all the gluten-free cooking in stride as well and makes everything for me. So I do the planning but am very very blessed to have her help. I am inviting a young person here from the USA who is celiac, just met her recently.

Boy does that sound good! I'm still in a food rut over here........

I have not posted in a while but i have been reading along

It's always good to hear from you when you post! Glad your chelation is going better without the glutathione. Hopefully the new stuff he wants you to take will agree with you.

Well, I have electricians, plumber, painter, and guys working on my stove today ... that is all good news except for the country music that's about to make me pull my hair out!!!! I've got to get out of here ..... things bother me much more when I'm herxing .... the guys working on the stove have to vent it through the roof, so they're in my room upstairs, so there's no privacy! I might have to get my earplugs ...

Sorry about the racket Carla. I think country is better than heavy metal though. Does that mean the stove will be done and ready for use tomorrow? Do what you have to do to save your sanity!

[Green12 2]

Ok, so I lied...here I am popping in

Sherry, that is so fabulous you have someone cooking for you! Although I really enjoy the cooking part of it just as much as the eating and celebrating

miamia, so good to hear from you! I'm sorry you have been having such a rough time of it lately. I'm glad to hear you are feeling a little better without the glutathione. Sounds like you have a good plan with the additional supplements. Rest up and check in when you can.

I also had stool tests through Great Smokies and Quest.

Carla, hang in there! Soon you will have a brand new kitchen and all this noise and inconvenience, and all the disruptions, will be so worth it

[CarlaB 22]

Sorry about the racket Carla. I think country is better than heavy metal though. Does that mean the stove will be done and ready for use tomorrow? Do what you have to do to save your sanity!

Carla, hang in there! Soon you will have a brand new kitchen and all this noise and inconvenience, and all the disruptions, will be so worth it

A funny thing happened. Right after I wrote about the country music, the general contractor asked for a show of hands on who liked the country music the painter had turned on. I popped my head in and said that as long as they were taking a poll I wanted to let them know I couldn't stand it and was trying to figure out where I could go to get away from it! So, no more country music.

The stove will be turned on today (it's one that's on all the time like your water heater is).

It looks like it will all be done today except for the painting, which has been started, and the light fixtures I didn't get ordered until last week.

The good news is, I'm feeling better! I was thinking that the Tindamax would have me feeling bad the whole week I was taking it like it did last time, but I think my herx was only the past couple days .... I'm pulling out of it today. I don't feel as good as I do off that med, but I'm not as bad as I've been .... I'd say 75%.

[confusedks 1]

Thanks to everyone with your suggestions. I will present it to her like "we need to rule out all possible illnesses, just like we have with the GI, etc." I think the only reason she is hesitant, is money. Well, actually that is the only reason. Lyme treatment will be expensive for us because our insurance doesn't cover too muhc. The abx they want me on for the possible SBBO is $280 for 10 days! So, my mom can't imagine having to do that 3 times a month long term. I know it may not be that much, but she is just worried.

We did talk a little bit after I posted on here yesterday, and she is willing to try everything we can, but money is porhibiting. My dad is completely unwilling to pay for anything. I am really upset about that... . Again, thanks for all the suggestions.

We decided we will make more choices about what the next step should be after we get the results from this hydrogen breath test. If it comes back negative, we will do the IV's and then go up to the LLMD. If it's positive, we will do the abx, then the IV's and then hopefully the LLMD.

I am hoping this is negative at this point, because I don't want my mom to think this is the root of all my problems. I will go over Dr. B's guidelines with her and that will hopefully help convince her that we need to explore the Lyme route.

Also, she is worried that I am just as convinced it is Lyme as I was it was Celiac. We were almost positive it was Celiac, so she now is basically saying, "what if it's not Lyme." My answer is, "let's cross that bridge when we get there."

I hope everyone has a happy turkey day! I have no idea what I am going to eat...hmmm will have to think about that one.

Kassandra

[CarlaB 22]

I've been there!!! I was SURE I had celiac!!! When I first went to the GI it was all he tested for because he was so sure, too!

I don't know how your insurance works, but mine has the same cost to me whether it's a month or a week .... so, if you got a month's worth, it could be the same price as only 10 days' worth ... that's how mine works.

You might look into WalMart, I hear they have cheap meds.

If you can get a local doctor to work with your LLMD, then you can do as much as possible through him so you're paying for as little as possible out of pocket ... for example, I have my monthly blood work done here ... I go to a walk-in clinic/lab and it's 100% covered by insurance ... if I had it done at my LLMD, they would charge me for the blood draw, and maybe make me prepay for the labwork.

[dlp252 5]

And, you might check into whether or not your insurance has a mail in program. Mine does...I don't use it, but my co-worker (who has more medical issues than I do, lol) uses it all the time for all her various meds. Anyway, the mail in program usually gives you a longer supply...I'm not sure about the cost, but I think it might be for the same amount of money...I'll have to double check though.

[AndreaB 1]

The good news is, I'm feeling better! I was thinking that the Tindamax would have me feeling bad the whole week I was taking it like it did last time, but I think my herx was only the past couple days .... I'm pulling out of it today. I don't feel as good as I do off that med, but I'm not as bad as I've been .... I'd say 75%.

That's great news! Especially with the holiday weekend coming up. I'm assuming Morgan will be home.

We did talk a little bit after I posted on here yesterday, and she is willing to try everything we can, but money is porhibiting. My dad is completely unwilling to pay for anything. I am really upset about that... . Again, thanks for all the suggestions.

I agree that money is prohibiting. Just do what you guys can that includes working you back to health. The LLMD will probably be better able to work with you on the most important thing to be addressed and break things down to be easier to afford for you.

Keep us posted on the SBBO......when was that again?

[confusedks 1]

So the GI wants me to start the abx without getting the results! I don't get her at all...why order the tests if you're going to treat me anyway? I am going to wait until we get the results before I start the abx, because I don't want to take any abx that aren't necessary.

We also found out exactly which abx I am allergic to. They are: amoxicilin, cyclor, bactrin, donatol. I am going to look these up and see which abx "families" they all fall under.

So our plan of action at this point is to wait until we get the results to make an appt. with the LLMD. I hope so much that the SBBO test is negative so we can go ahead with the iron IV's and then get into see the LLMD.

Carla,

I know we need to find a Dr. but I wouldn't even have a clue how to find one who is willing to do the treatments. I actually have an idea of who may work with us. We will have to see. But as far as labs, it doesn't matter who orders the labs, it is covered. So that won't make a difference, which is good because in theory the LLMD can call in lab orders whenever he wants them, and it won't matter if we have a Dr. who IS covered as far as the lab coverage.

Donna,

What is a mail in program?

Kassandra

[confusedks 1]

So I just found out that donnatal is not an abx! It is a sedative!!! I can't believe my pediatrician put me on that when I was 3 years old!!!!!! I am hoping it has some other use than what they used it for...lol!!

Kassandra