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Omg...i Might Be On To Something


Rachel--24

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CarlaB Enthusiast

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.


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melmak5 Contributor

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 Enthusiast

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 :lol::lol:

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

AndreaB Contributor
Just wanted to wish everyone a Happy Thanksgiving,

Back at you. :D

mftnchn Explorer

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 Proficient
Just wanted to wish everyone a Happy Thanksgiving

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

miamia Rookie
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?


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miamia Rookie

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 Proficient

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 Rookie

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 Rookie
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 Enthusiast

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 Enthusiast

Mia, it was Genova Diagnostics.

mftnchn Explorer

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 Enthusiast

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 Apprentice

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! :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 Contributor
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. :P Does that mean the stove will be done and ready for use tomorrow? Do what you have to do to save your sanity!

Green12 Enthusiast

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

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 :D

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. :wub:

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 :D

CarlaB Enthusiast
Sorry about the racket Carla. I think country is better than heavy metal though. :P 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 :D

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 Enthusiast

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! :o 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 Enthusiast

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 Apprentice

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 Contributor
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 Enthusiast

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? :huh: 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 Enthusiast

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!! :o

Kassandra

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Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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