Omg...i Might Be On To Something

[jerseyangel]

Wow--so much going on with everyone....

Carla, your med schedule is mind boggling. I don't know how you manage to keep it all straight. I hope that it begins to make a tangible difference soon!

Donna, I agree with Andrea on the numbing--I'm a chicken when it comes to the dentist. You take care with all you're having done!!

Andrea, Nice to see you posting--missed ya!

Laura, C-diff--ugh! I had to take flagyl years ago, and I didn't have any negative side effects--except for a metallic taste in my mouth. Just remember not to drink any alcohol while on it--it will cause vomiting. Keep us posted as you can--I've been thinking about you.

[CarlaB]

Carla, your med schedule is mind boggling. I don't know how you manage to keep it all straight. I hope that it begins to make a tangible difference soon!

Every day I reread the directions for everything and find something I'm doing wrong. So each day I "perfect" my schedule.

[jerseyangel]

Every day I reread the directions for everything and find something I'm doing wrong. So each day I "perfect" my schedule.

I do imagine you'd have to be continually honing it!

[AndreaB]

I have a question for you experts! Morgan is suffering from fatigue even though she gets on average 9 hours of sleep each night. She slept for 12 hours last night and had to go back to sleep because her eyes were sore. After she slept some more, she's still tired and her eyes aren't as sore, but they're still bothering her.

Any ideas? I had Lyme already when I was pregnant with her ... she eats gluten-free.

Has she been going through exams etc where she tired herself and her eyes out?

Do you think she has lyme that may be starting to act up?

[Rachel--24]

Laura,

Sorry about the C. Diff.

I tested positive for it last year and was on the Flagyl for two weeks. It was rough on me....I hope it goes alot smoother for you. Are you having diarreah?? I didnt really have any symptoms from it (that I know of)....and no "D".

The GI told me it probably hadnt gotten to a point of being problemtatic....who knows though...maybe the next round of antibiotics (other than Flagyl) might have set it off.

We've been talking about C. Diff lately....let me know if you want the link for the C. Diff message board. I was on there while I went through my antibitoic treatment but I didnt really seem to fit in (symptom wise). Maybe I'm just so messed up the C. Diff was barely noticeable?

Good luck....let us know how it goes.

I'll say some prayers that the Flagyl helps for you.

[dlp252]

Laura, so sorry about the C.Diff!!! My doctor was sure that's what I had since I had the D for so long, but fortunately for me that wasn't it.

Andrea, that testing sounds very interesting!

[Rachel--24]

I have a question for you experts! Morgan is suffering from fatigue even though she gets on average 9 hours of sleep each night. She slept for 12 hours last night and had to go back to sleep because her eyes were sore. After she slept some more, she's still tired and her eyes aren't as sore, but they're still bothering her.

Any ideas? I had Lyme already when I was pregnant with her ... she eats gluten-free.

Carla,

Did the Dr. say anything about the kids??

If she has some Lyme in her I'm sure it could cause symptoms if she's under too much stress or pushing herself too hard. Anything that could weaken her immune system. Stress is HUGE when it comes to this.

She should get lots of rest and relaxation.

Also, Is she possibly stressing out about you having Lyme and the chance that it could have been passed to her?? Do you think that could be bringing her down??

I had sore eyes whenever I got under stress....headaches behind my eyes and alot of pressure. The pain in my eyes made me want to sleep alot. I have no idea if it was from Lyme or Graves Disease or both. This was way before I had the dental work so it wasnt mercury.

It was something that was happening when I pushed myself too hard or got too "wound up".

[Rachel--24]

How long were you on the candida diet last time? Was it a combo of the foods you were eating and the nystatin that was so bad?

Is there an estimate as to when the die off won't be as bad since the population should be going down?

Andrea,

The last time around I was on the Candida diet for 4 months...very strict with no cheating.

I'm not exactly sure what happened on Tuesday?? I was eating alot of garlic but I didnt really eat any new foods or anything.

One possibility is that I fed the candida.

What happened is that I had only been off the ice cream for maybe 2 or 3 days. When I came home I didnt have much to eat...I was out of beef and all I had was some lettuce, a few veggies and not much else. I ended up eating an apple which gave me some minor symptoms.

I was still really hungry and I had half a container if ice cream in the freezer. I didnt think it'd be a big deal since I'd only been off of it a short time. I didnt feel *too* bad after eating it....but when I got home from work and took the Nystatin it hit me hard. Maybe it was because I'd fed them earlier that day??

Maybe I was causing swings of feeding them....killing them...feeding them...killing them...

I was still eating my potatoes which isnt good either. I havent had a potato since Monday and I'm totally through with the ice cream for good. I can tell I was shooting myself in the foot eating ice cream and taking nystatin. It wasnt going to work.

I think maybe thats why I felt so intoxicated after taking the Nystatin on Tuesday. Its hard to know anything for sure though.

I think I'm going to suffer die-off anytime I let the yeast get ahead...so I have to be careful. Its not just about foods either....perfumes and other chemicals can set me back too.

[Rachel--24]

Carla,

I was hoping you'd post about your meds and how you're doing.

Its HEINOUS to remember everything when there are lots of meds and supplements to take. I cant keep track of my own and I dont even have all that many right now.

I hope you dont have too bad a herx. Good for you about keeping up with your exercise and saunas and everything else you do! Dont push too hard though...if your body wants rest just give in to it.

Donna,

YAY for being *almost* amalgam free!!

I hate the numbing stuff. I think I'm more scared of the numbing stuff than I am of the pain without it.

[CarlaB]

Morgan seems to be getting plenty of rest, but I don't know about relaxation. I also don't have a good idea of whether she's under stress or not. College is when my Lyme symptoms first started, so that was what I was worried about since I know she was exposed through me.

Doc said that if the kids weren't showing symptoms specific to Lyme, it wasn't necessary to have them tested at this point. I was thinking Chloe needed testing, but he said learning disabilities like hers can be caused by food allergies or candida, so to have her tested for those. Then have her tested for Lyme here before we took her to see him. He didn't seem to be overly concerned about the kids. He just said to watch for Lyme symptoms in them. I believe fatigue would be one of them though.

I told her to get plenty of rest, including on the weekends. And to eat right, which she has been. We'll just have to keep an eye on it. I'm just concerned because it's when my symptoms started ... but at least in her case she knows she might have it, that will save her years from guessing if she does get ill.

[dlp252]

YAY for being *almost* amalgam free!!

I hate the numbing stuff. I think I'm more scared of the numbing stuff than I am of the pain without it.

I've had so much dental work done that the numbing stuff doesn't bother me (but who knows what it does to my body) anymore, but he gave me injections in 3 places yesterday and I swear on the third one my whole body felt like it had been given a tranquilizer and went limp! Everything just relaxed--all of a sudden. That freaked me out a little cuz that's never happened. But, it didn't seem to progress to anything more than that, so stopped thinking about it, lol. (Always in the back of my mind is one of my co-workers...years ago she went to the dentist on her lunch break and whatever they used on her gave her a really bad reaction...paramedics where involved! Yikes!)

[CarlaB]

if your body wants rest just give in to it.

I have no choice about that!! LOL I think all I do besides sauna and exercise is rest!! Yesterday I was so tired, I didn't even make it to the grocery for food for dinner ... the kids were scavengers last night, but at least they emptied a lot of stuff out of the fridge and cupboards!!

I have found I had to shorten the length of my saunas. I just can't take it as long anymore. That started when I started all the meds, so they must have something to do with it.

I haven't posted much about them because there really hasn't been much to post. I'm a little more tired than before, but other than that and trying to learn the medication schedule, everything's still the same.

[nikki-uk]

Morgan seems to be getting plenty of rest, but I don't know about relaxation. I also don't have a good idea of whether she's under stress or not. College is when my Lyme symptoms first started, so that was what I was worried about since I know she was exposed through me.

Doc said that if the kids weren't showing symptoms specific to Lyme, it wasn't necessary to have them tested at this point. I was thinking Chloe needed testing, but he said learning disabilities like hers can be caused by food allergies or candida, so to have her tested for those. Then have her tested for Lyme here before we took her to see him. He didn't seem to be overly concerned about the kids. He just said to watch for Lyme symptoms in them. I believe fatigue would be one of them though.

I told her to get plenty of rest, including on the weekends. And to eat right, which she has been. We'll just have to keep an eye on it. I'm just concerned because it's when my symptoms started ... but at least in her case she knows she might have it, that will save her years from guessing if she does get ill.

Carla, I'm having similar concerns about my 17 yr old (well not Lyme concerns) but he's alway's tired ,sore eyes (I thought it was his contact lens maybe?) achey...just lacklustre for a teen.

I have attributed some of his symptoms to the pressure of school and studies - but took him to the docs to be on the safe side.

He's tested him for celiac disease and mono (waiting on them results)

His full blood count showed he's anaemic (which does cause tiredness) - could Morgan be anaemic??

Carla, your regime of drugs confuses even the clearest of heads!!

...and I so admire you for dragging yourself to the gym 4 times a week!!! - I don't know how you do it all.

I manage to go to the gym 3 times per week and it wipes me out!!!

[CarlaB]

Nikki, trust me, I'm not doing much!! I have noticed, I FEEL so much better (relatively) on the days I go to the gym, so it's actually difficult to not go every day! It's one of those paradoxes of life ... I'll not be able to get out of bed, but I'll drag myself to the gym, then I actually feel like I'm alive again.

I'm going to wait and see for a little while on Morgan. We'll see how she feels in the next couple weeks. If the fatigue keeps up, we'll have to start looking for what it is. I don't know whether she's anemic, but I guess she could be. I've always been borderline. I'm sure she's not eating much red meat at college!! LOL Thanks for the ideas.

The eyes hurting is what's worrying me. It's not like they hurt when she's studying, they hurt when she gets up in the morning. I think Rachel and someone else here mentioned hurting eyes.

[diamondheart]

Lots to reply to, but first, we'll tune into another episode of...the BioSET Files .

Well, I didn't exactly have a "BioSET" appointment last night. I went in to Dr. F all ready to bombard him with questions about parasites, but I forgot my list . He started testing me for foods. Eggs, ok. Dairy, ok. Wheat, ok . Whaatt? How did that happen? He checked it again. "Yeah, you're fine for wheat. That's what happens when the intestines heal. You lose your food intolerances." He hadn't cleared me for gluten in the last appointment. I was shocked .

So, I guess my intestines are healing after all . He said that the herbs I'm taking can cause diarrhea, which I actually started to suspect. I'm going to space out when I take the Huang Lian Su herbs. Plus, he switched my other herbs, adding a BioSET herb mix called "Gastro Calm". Oh yeah, I need that one .

The parasite discussion ensued. He said if I had any of the pathogens I was worried about, C. diff, B. hominis, D. fragilis, that he would be using the same medicines to treat them. I felt ok about that. We'll do a stool test again when I don't need the herbs anymore. I think I took the Huang Lian Su for two months last time. I'm glad not to take the antibiotics. I've taken way too many in my life already .

I asked him, do you have any more tricks up your sleeve? So he whipped out his panel of parasite vials. I asked if it was a BioSET panel, and he said it predated that, but I imagine it's the same thing basically. He didn't find anything and was about to put it away when I asked him to check the Lyme vial. "Now you are really getting paranoid," he said . This guy makes me laugh. I was nervous, but tested negative (whew!).

He also asked if I internalized stress. Huh, kinda . I know I need to get a handle on my stress and get back to daily meditation. I know when I meditate a lot, I always physically feel better. This week was a very stressful week as I had to be in close proximity to the ex-wife more than I care for . I'll just leave it at that.

I'm pretty much convinced that my problems right now are pathogenically rooted. Seems to be a common theme here right now . I'm not going to start eating a lot of these foods that were formerly forbidden until my gut is healed. I can definately live without gluten. I'm going to start adding in dairy with probiotics sans the sugar. I felt pretty good after I left my appointment. The good news and the acupuncture put me at ease .

This article talks about Molybdenum being helpful as far as helping the body get rid of the actealdehydes...

So...I think I'm extremely sensitive to those chemicals in perfume because of the candida toxins....my liver cannot handle all these "aldehydes".

I think I'll ask Anna or my Dr. about the Molybdenum...

Does anyone know what that is?? Is it a supplement?? Heck....I'll go buy some tomorrow.

Rachel, here's a better explanation than I could provide about molybdenum:

Molybdenum is a transition metal. The pure metal is silvery white in color, fairly soft, and has one of the highest melting points of all pure elements. In small quantities, molybdenum is effective at hardening steel. Molybdenum is important in plant nutrition, and is necessary in animal nutrition (including human nutrition) as well. It is found at the active site of certain enzymes, including xanthine oxidase.

Molybdenum is mined here in Colorado. Donna, since you were working on metals, it could explain why it came up in your BioSET panel.

BTW Rachel, congrats on giving the ice cream, again. I hate when I backslide .

Thanks, yes, I think his assistant will also mention numbing me for the drilling, lol. It's a really small filling, but from my experience with the other one which is almost exactly the same size...I want to be numbed for this.

I hate dental drilling. I get the heebie-geebies just thinking about it . Did you ever see the movie with Dustin Hoffman where the mafia drill through his front tooth without numbing .

a quick note....

tested positive for C.Diff today. Start on Flagyl. Other things are going on as well, but this is the first one we are addressing.......

xoxo

Laura, congrats on them finding something, and starting treatment! From what Rachel was describing in her previous post, it sounds like C. diff can make some people really sick.

I have a question for you experts! Morgan is suffering from fatigue even though she gets on average 9 hours of sleep each night. She slept for 12 hours last night and had to go back to sleep because her eyes were sore. After she slept some more, she's still tired and her eyes aren't as sore, but they're still bothering her.

Any ideas? I had Lyme already when I was pregnant with her ... she eats gluten-free.

Andrea had a good idea to check on mono. I think when you get mono young, it doesn't affect you as much as when you are older. When I had it, we thought maybe my stepson got it, but he didn't suffer nearly as much as I did.

Claire

[dlp252]

Molybdenum is mined here in Colorado. Donna, since you were working on metals, it could explain why it came up in your BioSET panel.

Oh THANK YOU!!!! I'm glad someone can remember what's going on with me, lol. Yes, we did metals, lol.

I hate dental drilling. I get the heebie-geebies just thinking about it . Did you ever see the movie with Dustin Hoffman where the mafia drill through his front tooth without numbing .

I can safely say that that is one movie I'm glad I DIDN'T see, lol. There is also a show called Monk...one episode was with a crooked dentist who was going to do a bunch of dental work without numbinb... Made me squirm. I squirmed yesterday and I HAD numbing, lol.

[diamondheart]

I was still eating my potatoes which isnt good either. I havent had a potato since Monday and I'm totally through with the ice cream for good.

I've been tracking my food again in a diary. Sugar is feeding whatever little beasties I have too. So sugar is out. I'm not even chewing sugarless gum as I think those sugar (xylitol, etc.) alcohols aren't good either. I would do the Specific Carbohydrate Diet, but I can't restrict my carbs that much. I think I'll just cut down on my carbs so as not to feed the beasties, but not so much as to starve myself as well. I felt that when I did SCD that I was starving my "pets" and myself!! Not good.

I made a mistake in another post and asked someone if they kept a food dairy . The guy was nice and said, I can have dairy but don't have a food diary .

Donna, weren't you saying something recently about the amount of carbs? I'd like to start tracking it. I think I need more carbs like I need another hole in my intestines .

Forgot to mention probiotics. Dr. F explained that the theory is that if you take large quantities of one type of probiotic, like lactobacillus, that it will create an environment condusive to the other many types of beneficial bacteria that inhabit your gut. Kinda like the build it and they will come theory. I always thought it was weird to take massive quantities of one or two types of probiotics. So, I bought some kefir and sauerkraut last night. I want to stock up on my beneficial bacteria. Makes me wonder if this bacterial dysbiosis started years ago. How come my doctor at the time didn't mention it?

Stupid doctors who charge more for the title of "holistic" in front of their name, but don't know squat .

Claire

[diamondheart]

Oh THANK YOU!!!! I'm glad someone can remember what's going on with me, lol. Yes, we did metals, lol.

I just like saying it, molybdum. Mol-ib-di-di-dum . Try saying that three times fast!

[dlp252]

Donna, weren't you saying something recently about the amount of carbs? I'd like to start tracking it. I think I need more carbs like I need another hole in my intestines .

Yep, it's a habit now. I write down everything I eat and what exercise I do and recently what is going on with my health. I started keeping an exercise diary when I first began exercising a few years aso, and now it's just a habit. I like to know the nutritional breakdown...how much is carb, protein, etc. I see a direct correlation in the amount of carbs I eat and how well I feel... The more I eat the less well I feel.

[CarlaB]

Andrea had a good idea to check on mono. I think when you get mono young, it doesn't affect you as much as when you are older. When I had it, we thought maybe my stepson got it, but he didn't suffer nearly as much as I did.

I missed that post .... but I did think of mono. I guess it might be better for her to have mono than Lyme, but either are bad!!

[happygirl]

x

[CarlaB]

So, here's the recap:

positive IgG for rmsf (a lyme co-infection)

some bands positive for lyme...most were not....but enough to make them "concerned"

IgA deficient

trace amounts of yeast

autoimmune thyroid antibodies

mildly high levels of C.Diff

+ for mild colitis

Things that are ok include:

adrenal functioning

parasites

other co-infections

TSH, T3, T4

That is the recap of my last three rounds of testing by my llmd. They were really surprised by my C.Diff, as I haven't been on antibiotics in probably 2-3 years? Their plan is to treat my C.Diff with Flagyl (By the way, I kept misprouncing it, so I've decided to affectionately call it "Fraggle" --- like Fraggle Rock, ha!), then once I have two clear tests, then I'll be "ok" in terms of that.

After that, they want to start Vit. C (and other stuff) IVs twice a week, to start boosting my immune system. She said that because I'm IgA deficient, its as a result of my immune system being suppressed....and that may be why all my tests are basically in the middle...not highly positive but not negative, etc.

After that, they are considering antibiotics.

Which bands were positive for Lyme? Was this an LLMD?

[happygirl]

x

[happygirl]

x

[CarlaB]

Thanks for reposting that Laura. It sounds like you're finally getting somewhere!