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Rachel--24

Omg...i Might Be On To Something

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In fact, more people with Lyme gain weight than lose.

I would have never guessed that. I thought it would be the opposite!

I am trying something different with foods, trying to eat as much variety as possible instead of doing my usual 7-10 (or so) safe foods over and over again.

I'm working on the stress response with food, the pattern that sets in when you ingest the same thing when your body is under stress- then the food becomes the stress.

I'm able to eat a lot more foods than most here, it seems. I do ok with fresh food in it's natural state so so far it's going ok.

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That's probably because so many of us have Lyme, but thought we had celiac. Just because of the website that brought us together, we are the ones who lost rather than gained. :)

Over on LN, many talk about how much they've gained. I read the statistics once, I think it was 70-80% gain.

I'm glad your new diet strategy is working well. :) I'm looking forward to having a kitchen back ... and getting my braces off! My braces prevent me from eating a lot of foods that I normally would eat -- raw stuff, salads, etc.

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I'm able to eat a lot more foods than most here, it seems. I do ok with fresh food in it's natural state so so far it's going ok.

Sounds good. Keep us updated.

Carla,

Will things be done enough for Thanksgiving?

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Carla,

Will things be done enough for Thanksgiving?

Yes. :) There will still be some painting that is incomplete, and they didn't have enough tile for the backsplash, so we're waiting on that .... since it's stone, it will also need to be sealed .... but other than that, it will be done.

On the other hand, we'll be moving our stuff in it late Tues./early Wed., so we're cutting it close.

My dad is sick, so he just cancelled .... that makes it a little easier ... between my herx this week and cutting it close with the kitchen, it takes the pressure off ... he was our only visitor this year. Now, if I can't get to cooking till Friday, who cares? LOL

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This is a fly-bye...

I am not sure if anyone has mentioned, but FYI - chocolate is fermented, so for persons with mold issues, it might not be the best.

Personal Update

- Heart monitor is comic gold - I have now got people convinced they modeled the ipod after it

- Upper GI stuff is better, lower is worse, the bleeding is back as is the C/D dance

- I have an appointment with a new GI at a new hospital for December 3. If my current doesn't think rectal bleeding deserves a returned phone call, nothing will get her attention.

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So, the never ending doctor journey continues!!

We went to the GI and she truly doesn't think I have celiac. She thinks I have a small bowel bacterial overgrowth and confirmed an IBS diagnosis!!!!!!!!! I asked her what causes IBS and she said "STRESS!" OMG, I could have killed her! She was very thorough, etc. but she's not looking at the whole body picture.

She said that it's not an emergency to get the Iron IV's (what the heck does she know...last I checked she was a GI Dr., NOT a hematologist!) because my Hemoglobin is fine.

She also said I may have lymphocitic colitis (I will research this later to see more about it). She ordered a hydrogen breath test to confirm the SBBO and then ordered a 10 course of abx, 2 pills 3 times a day!!! UGH!

I am really frustrated because she wants me to do the abx first, then do the iron IV's to see which one makes me feel better, but I think she thinks her area of specialty is more important than the blood stuff.

We are now waiting to see which course of action to take first...abx or IV?! She told us to call the hematologist and see what he says, but I told my mom to have the hematologist call her because we do not have medical degrees and we are unfit to decide which needs to happen first!

As of now, we are waiting for both dr's to talk to each other. She said in the long term, she is going to want to do an endo./colon. and may have me go back on gluten. SHe said "since you're already feeling crappy, why not put gluten back in your diet so we can diagnose you!" ARGH!

To say the least, it was frustrating. She also said that since I have grown fine, I couldn't have celiac...so wrong!

Kassandra

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My dad is sick, so he just cancelled .... that makes it a little easier ... between my herx this week and cutting it close with the kitchen, it takes the pressure off ... he was our only visitor this year. Now, if I can't get to cooking till Friday, who cares? LOL

Friday would be good too. If it's just the family they'll understand.

So, the never ending doctor journey continues!!

I feel so bad for you and these doctors. :angry:

I would think the IV's are much more important.

I thought you had problems with abx.

Personally I'd do the IV's, get your lyme testing done (through Igenex) and head to the LLMD for the battery of tests they run. Lyme could very well be causing all that's going on with you and all the bandaids won't fix it.

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Kassandra, what abx is she talking about? I thought you couldn't take abx?

I would get the iron IV's to help with the symptoms and go see the LLMD for determining the treatment protocol. You may want to keep these other doctors which are covered by insurance, but let the LLMD direct. He will see the big picture rather than a bunch of seemingly unrelated health issues.

Andrea, we all cook together .... everyone has their job .... so if it's not till Friday, it'll be because of all of us! But I think we'll be able to pull it together for Thursday. :)

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Andrea,

I agree, this is all a bunch of BS!!!! Apparently the abx aren't absorbed through your blood... or some part of your body that causes the allergic reactions. I have no idea...I may go into anaphylactic shock...lol! Who the hell knows?!

Carla,

The abx is rfaximin. I have no idea what to think of all of this. Now my mom is holding onto the idea that it might all get better with the proper treatment of the SBBO. UGH!

Kassandra

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Kassandra, I had the SSBO, too. In your case, especially, I'd try the non-abx route for the bacterial overgrowth ... I took Cipro for 21 days, and I felt much better on it, but as soon as I got off, the GI issues returned.

If you just take an abx to get rid of the bacteria, but don't try to completely restore the balance in the intestine, then it will just come back when you stop.

I was taking VSL#3, a very strong probiotic, along with the Cipro .... it still wasn't until I used herbs that I felt better.

BTW, Humaworm takes care of all the bad bacteria that I had in my intestine ... I wish I found it in the beginning of treating the dysbiosis .... it's cheaper than buying all the herbs separately.

If I were you, I'd get on a good probiotic, Humaworm for 30 days, and see the LLMD ... plus the iron IV.

Your mom needs to understand that a bullseye rash is diagnostic of Lyme, and until you fix the underlying cause of your body being so out of balance, you are not going to get better.

Maybe showing her the ILADS website and Dr. B's guidelines would help convince her.

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Carla,

Thanks for the link. That is interesting...so you're saying that her stupid SBBO dx could be a co-infection of Lyme?! :o

I am so frustrated with all of this. Also, could you give me a link to Dr. B's guidelines? I don't know if I have ever seen/read that.

I am just in awe of everything...talk about disillusioned with the medical community! :angry: My mom talked to my hematologist and he is saying he still thinks I need the IV's ASAP!! He wants to know why the GI thinks that what she wants to treat is more important than my "critically" low ferritin. Also, my total iron has dropped from 102 to 73 in 3 weeks! This will get out of hand if we wait much longer.

Kassandra

P.S. Where did you get the probiotic?

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I'm not saying it could be a coinfection, rather a manifestation of Lyme ... it IS Lyme. GI symptoms were a HUGE part of my Lyme Disease. Looking back over the years, anytime I had a Lyme flare, I had GI symptoms first. It was only within the past two months that I've healed from the GI issues ... treatment for both the dysbiosis and the Bartonella.

Many on LN seem to have GI issues from bart.

Dr. B's guidelines are at www.ilads.org.

I get VSL#3 at their website ... no one near me carries it. It's very expensive .... it has 450 billion bacteria ... Theralac is another GREAT one, a lot less expensive, but only has 20 billion bacteria, which is a LOT compared to the ones you buy in the store.

I think you need the iron, too ....

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I'm not saying it could be a coinfection, rather a manifestation of Lyme ... it IS Lyme. GI symptoms were a HUGE part of my Lyme Disease. Looking back over the years, anytime I had a Lyme flare, I had GI symptoms first. It was only within the past two months that I've healed from the GI issues ... treatment for both the dysbiosis and the Bartonella.

Many on LN seem to have GI issues from bart.

Dr. B's guidelines are at www.ilads.org.

I get VSL#3 at their website www.vls#3.com ... no one near me carries it. It's very expensive .... it has 450 billion bacteria ... Theralac is another GREAT one, a lot less expensive, but only has 20 billion bacteria, which is a LOT compared to the ones you buy in the store.

I think you need the iron, too ....

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BTW, Humaworm takes care of all the bad bacteria that I had in my intestine ... I wish I found it in the beginning of treating the dysbiosis .... it's cheaper than buying all the herbs separately.

Does dysbiosis have anything to do with parasites?......or is that just your situation.

Mitch has mild reflux and I am willing to get the humaworm for him if it will help.

My mom talked to my hematologist and he is saying he still thinks I need the IV's ASAP!! He wants to know why the GI thinks that what she wants to treat is more important than my "critically" low ferritin. Also, my total iron has dropped from 102 to 73 in 3 weeks! This will get out of hand if we wait much longer.

You need to get those IV's done! What's the holdup? Still the insurance and PICC line? I thought you'd been approved. Now that this appointment is out of the way will your mother get you in to get the iron IV's?

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Does dysbiosis have anything to do with parasites?......or is that just your situation.

Here's the link to the info on parasites at Humaworm ... http://www.humaworm.com/parasitetypes.html

It has bacteria listed as a parasite ... among other things ... like mold, yeast, protozoa, etc.

I would tend to think if you have a bacteria overgrowth, it doesn't exist alone.

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More news...the Hematologist said that it can wait 2-3 weeks, but NO longer. So I am going tomorrow to get the hydrogen breath test for the SBBO. We are also in the process of finding out which abx I am allergic to. My pediatrician's office is getting my chart out of storage and we should get copies within the next day or two. The nurse at Cedars Sinai today was shocked that I don't wear a medi-alert for my abx allergies. She said we needed to get them.

The reason the IV's are being postponed is BEYOND me! I have no idea...it's not a money thing because everything has been approved. The GI wants to see if this makes me feel better.

Carla, Do you know...if I take these abx is it possible I'll have a herx? Are there only certain abx that cause herxes? I didn't mean to sound rude when I said about the coinfection, I meant it more in a "I might be onto something" way. :)

Kassandra

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You didn't sound rude at all ... I knew how you meant it and didn't even think of it in a different way than "I might be onto something!"

You could herx from an abx .... but I don't know if you will on that one .... I Googled it earlier ... it seems it's used for traveler's diarrhea and it stays mostly in the digestive tract.

I think what you're dealing with is a GI doctor thinks the GI aspect is more important and the Blood doc thinks the blood is more important .... I'd pick the blood .... I don't think fixing your GI issues will be as cut and dry at the GI doc thinks ... based on my experience, it has taken me a couple months to fix the GI tract even after I knew the problem.

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I agree. She thinks I am going to go on the abx and feel better. For all we know, I was put on ones similar to these when I was a kid and I reacted. There are so many unkonwns it is crazy. The hydrogen breath test sounds grueling...you btreathe into a bag every 15 minutes for anywhere from 90 minutes to 3 hours!!!!! YUCK! They give you this sugary solution you have to drink before you breathe into the bag. Also, I have to fast...

Okay, I am glad you didn't read into that the wrong way. I am in such a frustrated place right now, I just wanted to make sure I didn't upset you. ;)

Kassandra

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I agree. She thinks I am going to go on the abx and feel better. For all we know, I was put on ones similar to these when I was a kid and I reacted. There are so many unkonwns it is crazy. The hydrogen breath test sounds grueling...you btreathe into a bag every 15 minutes for anywhere from 90 minutes to 3 hours!!!!! YUCK! They give you this sugary solution you have to drink before you breathe into the bag. Also, I have to fast...

Okay, I am glad you didn't read into that the wrong way. I am in such a frustrated place right now, I just wanted to make sure I didn't upset you. ;)

Kassandra

I did this, its not bad at all.

Its just more of a bother. No pain, no poking, just drinking some sugar-water and breathing heavily once in a while.

Bring a magazine or two... and a gluten-free snack. The nurse tried to give me COOKIES after the test was over, with my chart in their hands!

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IV might actually make a difference for you since its much more effective....also bypasses the gut. Of course more effective means more risk if you're not excreting well. Definitely need to check into that first. Its also a good idea to start with a low dose rather than the max.

I'm avoiding orals until late in my treatment because of my leaky gut/yeast situation. I'll switch to DMSA later on.

I had thought you'd been on IV all this time.

I was originally on the creme version which he preferred for me, but it wasn't stable long enough for me to take with me. I think he didn't want me to do IV DMPS on my own over here. I think he was also concerned with overwhelming my system that tends to be sensitive.

Yes, all of this needs to be reviewed and perhaps a different approach when I get to the USA.

I haven't ever had problems with the IV challenge for the orange jug except last winter I thought I did. It turned out I was reacting to bismuth--at least that is my conclusion.

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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.

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Carla, I totally agree with you! The thing is my mom doesn't quite get that it's almost 100% Lyme related. She keeps saying, "what if it's not Lyme, then we will have gone to an LLMD for nothing!" I get what she's saying, but I am positive it's Lyme related stuff.

Then I talked to a cousin of mine who is 30 years old and she had the nerve to tell me that I need to lose sight of the root problem! :(:huh::angry::o I don't get that at all...she is the one who has had fibro, CFS, etc. Can you talk about Lyme!? And, her mom has had health problems her entire life pretty much and was diagnosed with Lyme, but they never treated it!! :o

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. <_<

Kassandra

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Kassandra, I guess what is puzzling is that you can say the same thing about this GI, what if it doesn't pan out as helpful? How can your mom decide not to go to the LLMD based on that possibility but see other docs and not consider that question?

I agree with Carla about what you need to do, and am not impressed with your GI, or the "tug of war" between your GI and hematologist, although the latter sounds better.

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