Omg...i Might Be On To Something

[Rachel--24]

The only reason I came back to this site was because after having yet another hospital stay and my kids missing Christmas because of me, I was at the end of my rope...I was going to post something in this forum as a last ditch attempt to get help from someone who might be going through the same thing I was. That's when I saw your post with the 'I might be on to something' heading. As soon as I clicked on it, I knew I'd found what I was looking for.

Just wanted to say that alot of us can relate to how you feel. I know its not always easy for me to bite my tongue when I see people going down a wrong path...or taking bad advice from their Dr.'s or whomever else it may be. Of course we see alot of it here on the board and it can get frusterating at times.

I try to just give advice that I think might be of value to the poster and if they choose to not listen or if they believe the advice of their doctor (or nutritionist in this case) over the advice given here...theres not much else we can do. Ultimately its their own life and they are responsible for themselves. We can only hand them the info. that might be helpful....if not to the poster...then possibly to someone else who happens to read the thread later on.

I always try to keep that in mind when posting....that other people (aside from the original poster) are also having similar questions or thoughts and might end up reading the thread....so I just try to state the facts and hope that it will help someone at some point.

I try not to get angry about stuff....its really hard sometimes but in the end all it does is bring me down cuz I get all worked up and it affects my health.

I get symptoms right away when I get upset so I just avoid upsetting circumstances or too much negativity.

I definately understood your frusterations and we can all get emotional because we've all been there and its hard when you want to reach out and help but your words fall on deaf ears. Nothing we can do about it so yeah.....you've got 4 kids and you gotta take care of yourself first.

I'm glad you came back to the board and found this thread though.

[Rachel--24]

So maybe she didn't develop the necessary antibodies early in her life to be able to fight them off when they appear now? I don't know, I just thought it was interesting that it would seem logical that she probably ingests more germs than the others because of her habit and she definitely is more sick than the others so perhaps for her antibacterial soaps would be appropriate??!!

Yeah....maybe it would be appropriate for her!

I've always been a hand-mouth type person too. I put everything into my mouth. I never gave germs much thought and I dont think I ever washed my hands before eating until the past few years.

I never got sick though. My whole life I've not been one to ctach colds or anything else. I'm sure I had to be constantly introducing germs to my body but I guess my immune system was fighting them off??

I dunno....but I still dont get sick or catch colds.

Is it possible your daughter might be developing problems with gluten that could be bringing her immune system down?? Thats another thing that could contribute to freqent colds and such. I saw that they've all been tested and are negative but it could still could be a possibility....something to watch out for.

[LL04]

Tetracycline isnt standard treatment for Lyme. It might be something that can be tried later on if other antibiotics fail but typically its not used for starting out on Lyme treatment....as far as I know. Doxy is used for Lyme treatment and some others.

Why does this not surprise me? I have to admit though, my doctor is trying his best....

Sorry, haven't heard of it...I'll try to look it up in a bit though.

I tried to put the brand name of that mangosteen juice in my post but instead of the actual name appearing it just reads "Lame Adverstisement". I'd like to tell you the name but it won't let me although I know there are several different brands of this juice on the market.

Yes, I've heard of it. I was chatting with someone in Starbucks one day. He ended up being an infectious disease doctor. I mentioned that I was being tested for Lyme and he mentioned that Lyme is overdiagnosed, that I should Google Whipple's Disease. My symptoms weren't a match for it at all.

This is interesting too because one of the things my dr. mentioned was that he read that Lyme is very "overinvestigated"...well, when one is running out of options why not investigate it? He did say though in my case that he thought it was a possibility.

If only it were that simple ... I wouldn't go to anyone but an LLMD for treatment of Lyme Disease. You REALLY, REALLY need someone who knows what they're doing. It's a very complicated disease that can have many coinfections and many things that need to be treated at the same time or in a certain order. You also need to be building your own immune system with supplements and herbs at the same time because you can't kill all the Lyme bacteria ... your body needs to be prepared to go off the antibiotics at some point. Sometimes one antibiotic will be given, then the doc will change it to another in case the bacteria becomes resistant. Also, one of the coinfections is more like malaria than bacteria, so needs an anti-malarial drug. The other thing is, it sounds like your doctor is going to tell you that a 21 day course of anti-biotics will be long enough ... if you were just bitten today, it would have a 70% chance of being long enough, but for chronic Lyme, it won't touch it ... if it was enough, I would be healthy today as I was on doxy four years ago for 21 days.

Thanks so much Carla. I hear you loud and clear...go to the right doctor!! I will go on CanLyme and see if I can find one out in my neck of the woods. In the meantime I will get some more info off that site for the proper treatment of it and email it to my doctor before my appt. next week. Even if I don't get treatment from him, at least I can try and educate him on it. I send him updated stuff on celiac's all the time!!!

[Fiddle-Faddle]

I have heard this many times over the years and of course I don't know that's it's true or not, however, I make sure that any types of soaps etc...that I buy are not antibacterial. One interesting thing I have been able to observe as the mother of four kids is this: my oldest daughter has always put everything in her mouth, pens, pencils, her shirt sleeves, her hair, toys, dirt, you name it, she puts it in her mouth. None of the others did or do this (apart from what would be normal for babies to do). Out of all the them she is the one who is most likely to get a fever, cold, infection or sickness. She's had hand and mouth three times-although that wouldn't be surprising would it??? But that aside, if there is a cold going around, she gets it. (As I speak now she is home with a fever but all the others are fine and at school and I really don't expect they'll get sick either.) Now I know that several factors may contribute to this. I breast fed all of my kids so that's not an issue. She did not get sick as a baby even once, whereas the others all had bouts of one thing or other as babies. My oldest was sick almost his entire first year, he had croup 4 times alone, not to mention Roseola as well and now he is never sick! So maybe she didn't develop the necessary antibodies early in her life to be able to fight them off when they appear now? I don't know, I just thought it was interesting that it would seem logical that she probably ingests more germs than the others because of her habit and she definitely is more sick than the others so perhaps for her antibacterial soaps would be appropriate??!!

Do you mind if I ask some questions>

How old is your oldest daughter?

When she does get a cold, what (if anything) do you give her? Do you use a humidifier, either in your house or in her room? And do these colds come on suddenly, or does she sniffle and drip for several days before coming down with a full nose-blow-out cold?

Off the top of my head, I would think that the antibacterial soaps are not a good idea, but that frequent hand-wahsing with soap and lots of warm water (most kids just barely splash) is a good idea. Also, I think Purell is not good either--it just kills most of the germs, but they are still on her skin, and we know that the immune system reacts to killed cells! Plus, it'll end up in her mouth.

We don't use hand towels at our house, we use paper towels, which is probably terrible for the environment, but then I don't have to worry about changing the hand towel every time someone comes over (which is frequent).

One of my daughter's friends seemed to be sick every other week in kindergarten and first grade. But this year, her immune system seems to have kicked in, and she hasn't missed a day since September. Maybe she's building up her immune system now?

[covsooze]

Hi Lauralee

The discussion about anti-bac stuff is interesting. My mum was always fastidious about cleaning & me & my sis have ended up with loads of allergies. It'll be interesting to see how my DS turns out, as cleaning is not quite so high on my list of priorities!!

Susie x

[nikki-uk]

It'll be interesting to see how my DS turns out, as cleaning is not quite so high on my list of priorities!!

Susie x

Well there you go! I can now say I'm doing my kids a favour by not not cleaning as often as I should!!

Perfect excuse!

[covsooze]

Patti - so good to see you back Take it easy

Donna -what have you done about your problem with fats? Fats give me severe digestive problems (even 'good' ones) but I don't like the idea of cutting them out totally because they're so important - I know they defend against depression, among other things and that's a big issue for me. The elimination diet is rather hard going though without being able to fry or bake things in olive oil!

On which point....I fell off the wagon big time with the diet over the weekend. I had started getting really depressed (withdrawal from potatoes, I suspect!) and it all fell to pieces from there. I'm so weak willed! Anyway, having eaten a not inconsiderable amount of gluten-free bread over the next few days, and being in agony and wiped out as a consequence, I realised that there must be something in gluten-free baked products that is causing me big probs.

This doesn't come as too much of a surprise. Yesterday was my gluten-free birthday and I was reflecting on how my stomach actually feels worse since being gluten-free (apart from the evil wind!!). Needless to say, I'm back on the elimination diet. I actually feel loads better for it. No doubt I'll be falling apart again emotionally by the end of the weekend when the withdrawal kicks in...

[nikki-uk]

Suzie - just a thought - but do any of the gluten-free breads you ate have Codex in them??

[covsooze]

Hi Nikki

thought you'd like to know - we took DS to the GP on Monday, and he ordered the coeliac panel bloods & has referred DS to a peadiatrician. In Cov, we have to go to the hospital for bloods, which makes it an even bigger deal, so we are not looking forward to that

Carla: what you were saying about bacteria is interesting. I saw a TV documentary last night about eating healthily and they did some really fun studies of the effects of different diets. One was on a group of ranchers - they got half eating one probiotic yoghurt a day and the other eating prebiotic fruit and veggies (both sets, along with their normal diets). The prebiotic veggie group had far higher levels of good bacteria by the end of the experiment. Interesting. Prebiotic veggies and fruit are eg: bananas, onions, leeks, artichokes. Unfortunately, they all hurt my stomach (except artichoke, which I've never really tried).

[dlp252]

Patti - so good to see you back Take it easy

Donna -what have you done about your problem with fats? Fats give me severe digestive problems (even 'good' ones) but I don't like the idea of cutting them out totally because they're so important - I know they defend against depression, among other things and that's a big issue for me. The elimination diet is rather hard going though without being able to fry or bake things in olive oil!

First off, Happy Birthday a little late!

Hum, fats. Well, what I did this week was to purposely not add any additional fat to anything. I cooked everything in a non-stick pan or the microwave and I baked my game hens. Most of the meat I ate was definitely of the fatty variety (like ground beef...it's labeled lean, but it still has 15% fat...they have one that is only 7% which I'll get this week, and cornish game hens), so when I go grocery shopping tomorrow I will buy leaner cuts of meat which should also help. But, uggg, without a little oil in the pan, it's going to be a bit yucky, lol. I guess I've been relying on the fats that are naturally occurring in the food.

I haven't noticed ANY difference this week, but I don't see how I could what with the massive amounts of Vitamin C I'm taking (can we say big D, lol). The BioSET lady did give me some digestive enzymes to take, so I've been doing that too.

Don't kick yourself about falling off the wagon...I did the same thing whilst on vacation. Couldn't help myself. I'm restarting my elimination diet as well, but this time without the chicken, lamb, sugar and fats.

[CarlaB]

Prebiotic veggies and fruit are eg: bananas, onions, leeks, artichokes. Unfortunately, they all hurt my stomach (except artichoke, which I've never really tried).

I LOVE leeks!!! I know, I'm weird, but they are my favorite! I use them at least weekly, and I always buy organic because you just can't get all the dirt out of them!! Maybe that's why I don't have a candida problem! That along with my love of coconut oil ... and I supplement garlic.

It's always good to find out something you like is actually good for you!!

I've only skimmed everyone's posts, but I'll read later ... Rachel, I'll look up what was on the complete initial panel ... I think it was the 2 Western Blots, the free test, and one other test. Sounds overpriced if the Western Blots are less than $100. And the regional panel for here was $650 without Western Blots. My doc didn't do anything but sign, I filled out all the paperwork myself ...

[CarlaB]

Prebiotic veggies and fruit are eg: bananas, onions, leeks, artichokes. Unfortunately, they all hurt my stomach (except artichoke, which I've never really tried).

I LOVE leeks!!! I know, I'm weird, but they are my favorite! I use them at least weekly, and I always buy organic because you just can't get all the dirt out of them!! Maybe that's why I don't have a candida problem! That along with my love of coconut oil ... and I supplement garlic.

It's always good to find out something you like is actually good for you!!

I've only skimmed everyone's posts, but I'll read later ... Rachel, I'll look up what was on the complete initial panel ... I think it was the 2 Western Blots, the free test, and one other test. Sounds overpriced if the Western Blots are less than $100. And the regional panel for here was $650 without Western Blots. My doc didn't do anything but sign, I filled out all the paperwork myself ...

[covsooze]

Suzie - just a thought - but do any of the gluten-free breads you ate have Codex in them??

No. I was really poorly, as if I'd been glutened, after using a codex cake mix last summer. Never again! I'm of the camp that can't get my head around how any amount of gluten can be ok.

[nikki-uk]

No. I was really poorly, as if I'd been glutened, after using a codex cake mix last summer. Never again! I'm of the camp that can't get my head around how any amount of gluten can be ok.

Yes, I don't really understand how it's ok

Anyway, codex being the root of your problems would just be too easy! (but I had to ask )

BTW,- Happy Birthday!! and I hope little one get's on ok with the blood tests (ask for the MAGIC CREAM!!)

[diamondheart]

Question 1: Have any of you heard of this mangosteen juice which I cannot name here for some reason and what do you make of it? Snake oil yes or no?

I have read a study that compared some of the new juices, like mangosteen and acai (sp?). I don't have the article in front of me, but it was from a separate non-profit that studies claims like this. The upshot of the article was that you're better off saving your money. You can't get enough of the good stuff in drinking mangosteen juice to get the health benefits they claim, but if you enjoy drinking it, what the hey? If I find the article, I'll send it. I'm definitely in the messy house camp .

I've suspected for a long time that my body doesn't process any type of sugar well, but I've just ignored it for the last year or so. (I know, duh Donna, lol) Fructose came up on the BioSET testing as a problem...all the sugars did no matter what form they were in.

I'll have to have Dr. F check it next time I'm in. I think he did test some sugars at some point, but he doesn't give me anykind of report, so I have to just be paying attention. I know he has said to me that he doesn't think that sugars are something I have an intolerance to, but I may have other problems with them, like metabolizing them.

Yes, I've been popping on--it's just still uncomfortable to sit in a chair

Patti, Hope you are recuperating well. I remember my first day back to work, how sore I felt after sitting for half a day. I was amazed how many ab muscles you use when you sit! The things we take for granted!

Claire,

To do multiple quotes hit "quote" instead of reply and then post you're responses in between the various people quotes. If you have a person you want to break up into different quotes then once you are in the reply page you can copy the top line {quote name......} and paste it above the part you want to separate. Then you would need to add a {/quote} at the end of the section on top of that. Use these brackets though [].

That's probably as clear as mud right.

Ohh, I figured it out! That's so cool! You've created a monster .

my oldest daughter has always put everything in her mouth, pens, pencils, her shirt sleeves, her hair, toys, dirt, you name it, she puts it in her mouth. None of the others did or do this (apart from what would be normal for babies to do). Out of all the them she is the one who is most likely to get a fever, cold, infection or sickness. She's had hand and mouth three times-although that wouldn't be surprising would it??? But that aside, if there is a cold going around, she gets it. (As I speak now she is home with a fever but all the others are fine and at school and I really don't expect they'll get sick either.) Now I know that several factors may contribute to this.

Have you looked into IgA deficiency? The IgA antibodies are in your secretory juices, and coat the lining of your whole digestive system and lungs (I think). If you are deficient in them, I think you are more likely to catch things through your mouth. I was sick a lot as a young kid, and recently found out my secretory IgA was low, so I wonder if I've been IgA deficient all along.

Claire

[Anonymousgurl]

Hey everyone, hope everyone is doing well today.

I dont think anyone is on flagyl right now....but I think a few of us have had the unlucky experience of being on that HEINOUS drug. Flagyl sucks!!

Peace.....what were you on the flagyl for?? I bet you had a really bad herx....flagyl is sometimes used to kill Lyme. 10 days in the hospital....wow....you've been through alot.

I havent had to be hospitilized throughout this whole thing.

I think they just never took me serious and thought it was all psychological.

Flagyl DID suck...it sounds like you had a tough time on it too Congrats on getting through it though!!! I didn't make it through the whole amount of time that I was supposed to take it. Yea, it landed me in the hospital for 10 days and yea I have been through a lot, but I think EVERYONE posting on this forum has been through a lot. I just get sad when I think about it because you all seem like such GREAT people...you're all so caring and compassionate...why do bad things have to happen to such good people? Bummer.

And yea...was that Kaiser that you were referring to? They kept trying to tell my parents that I had a "psychological fear of foods that make people go to the bathroom". I was like YOU HAVE TO BE KIDDING ME...like seriously...is that a joke? Because that's the most ridiculous thing that i've ever heard a group of doctors say!! Thank goodness for alternative medicine.

OH, and to answer your question...I was taking Flagyl for the Babesia, and my homeopathic doctor though it might also go after some of the other parasites I have.

I had this too. My eye symptoms were the worst symptoms I've had to deal with this whole 4 years. My eyes hurt really bad during the first year....intense pressure and unbelievable pain. I cant even describe it but I hope I never experience anything like it ever again. I had to wear a bandana over my eyes too...because I got extremely sensitive to light. It was very painful.

I'm sorry that you're eyes cause you so much pain, but it's kind of a relief that it's happened to other people too because I thought that I was going crazy! I actually thought that I was going to be blind...because I was kind of like...seriously...you never know what's going to happen next with me. LoL.

Dear peacenlove_girl17,

Thank you for the good thoughts. I took it back in I think early November, and I have been sicker again since. Wow, it made you very ill too! I had to dope myself up on promethazine just to finish the course of those pills. I could hardly stand it. Now it has set off a whole other set of things. I was doing so much better up until that point! Flagyl is a very brutal drug on your body. The bloating in the lower abdomen is a major frustration, too. I get it right below my bellybutton too! It just never goes away!

Sincerely,

NoGluGirl

Aww well NoGluGirl, congrats on making it through the Flagyl. And I totally feel your pain on the whole bloating-below-the-bellybutton thing! How do you deal with it? I feel like it's so unnatractive, not to mention uncomfortable...I always want to wear clothes that hide it! I know it must be related to what im eating...i just dont know how to fix it.

[LL04]

I'm glad you came back to the board and found this thread though

.

So am I, you guys have been great. I haven't found as much info as to what might be wrong with me in the last year than I have on this board in the past week. Now that I find amazing!

It was almost $500, I can't remember the cost. Everyone has to pay for it up front ... I don't know if I'll get reimbursed by my insurance or not ... but knowing for sure was the most important thing for me. I'll most likely be paying out of pocket for most of my medical care for Lyme, too. I just don't see my medical insurance covering it ... but maybe they'll surprise me.

I am curious like Rachel to know what were in your panels? I can get a Western Blot here in Canada and our insurance will pay for it, but is it the same one as IgeniX offers or is their's different do you think? Any care or drugs that I may need to deal with this is covered by our insurance so I'm thankful for that. Plus we also have what we call "extended medical"-an extension to cover off even more things not covered by our regular insurance. I could probably order the panels from IgeniX and our extended would cover it...I'll have to see.

Is it possible your daughter might be developing problems with gluten that could be bringing her immune system down?? Thats another thing that could contribute to freqent colds and such. I saw that they've all been tested and are negative but it could still could be a possibility....something to watch out for.

Honestly, I think that probably all my children have a problem because WITHOUT fail after any meal that is not gluten-free, at least one of them will complain about feeling unwell, nothing in particular, just a general feeling of unwellness. I'm happy to announce that as of this weekend our whole family is going gluten free soon to be followed by dairy free (it should make Claire happy to know she has another convert in her camp)!! I don't think I can manage it all at once but I think I should be able to get it all together in a week or so. In fact, I want to take everyone caveman I think you call it...nothing but fresh fruits, veggies, organic protein and water. Oh my kids are going to LOVE me!!!!

[LL04]

Do you mind if I ask some questions>

How old is your oldest daughter?

When she does get a cold, what (if anything) do you give her? Do you use a humidifier, either in your house or in her room? And do these colds come on suddenly, or does she sniffle and drip for several days before coming down with a full nose-blow-out cold?

She's 9 and 1/2 and I never give my kids anything for their colds except on the rare occasion if their coughs get out of control, then I break down and give them one Triaminic night time dissolvable strip for kids. I got rid of my humidifier years ago. The colds (like this fever she just got) come on suddenly. She goes to bed fine and wakes up stuffed up to the nines. I have never had any of my kids tested for anything but celiac disease. When I got to my teens, after being a sickly kid, I forewent dr.s. I rarely went to see them in my adulthood, just for my pregnancies. When I got so sick I just kept putting it off and putting it off trying to "learn to live with it". The same goes for my kids...I just found out my youngest daughter's immunizations are not up to date as I'm registering her for Kindergarten in September...WHY? Because as the receptionist noted, she has not been in to see the doctor since she was 12 months old!!! That pretty much says it for all of them, even the sickie, finger-licker.

Hi Lauralee

The discussion about anti-bac stuff is interesting. My mum was always fastidious about cleaning & me & my sis have ended up with loads of allergies. It'll be interesting to see how my DS turns out, as cleaning is not quite so high on my list of priorities!!

Susie x

My house is a disaster!!! I have blinds on every window (I HATE BLINDS) and they are so dusty, I'm ashamed if people come over and see them!!! I'm going to hire a cleaner to do them ASAP! Happy late birthday by the way!!

No. I was really poorly, as if I'd been glutened, after using a codex cake mix last summer. Never again! I'm of the camp that can't get my head around how any amount of gluten can be ok.

I'm with you on that one!

I have read a study that compared some of the new juices, like mangosteen and acai (sp?). I don't have the article in front of me, but it was from a separate non-profit that studies claims like this. The upshot of the article was that you're better off saving your money. You can't get enough of the good stuff in drinking mangosteen juice to get the health benefits they claim, but if you enjoy drinking it, what the hey? If I find the article, I'll send it. I'm definitely in the messy house camp .

I definitely would like to see that.

Have you looked into IgA deficiency? The IgA antibodies are in your secretory juices, and coat the lining of your whole digestive system and lungs (I think). If you are deficient in them, I think you are more likely to catch things through your mouth. I was sick a lot as a young kid, and recently found out my secretory IgA was low, so I wonder if I've been IgA deficient all along.

No, like everything else, we have just learned to live with it. Not anymore though.

[Fiddle-Faddle]

Hi, Lauralee,

Sounds like you are doing everything right, especially the not being up to date on vaccines!!! (I'm not anti-vaccine, I just think injecting a baby with 26 of them by the time he is 18 months old is insane.) You do know that, even if you are registering for kindergarten, you can continue to hold off and still send your kids to school, right? At least, in most states, you can do so, but as far as I can tell, the media is controlled by the pharm lobby,s o every year we hear that they can't go to school without their shots, and that is a BIG FAT LIE. You can request an MMR titer, which will show if your kids have an appropriate immune response, and if they do, they don't need the second shot. The second shot is only given because 5% don't mount an immune response to the first one, and the pharm companies don't make any money off of the blood draws.

I don't know if this will work for you or even if it is any different from what you are already doing, but I go all out with chicken soup (with lots of ginger and garlic), ginger tea, hot lemonade, and diluted orange juice when my kids get colds, and it does seem to wipe it out pretty quickly. I tell them they are peeing the germs down the toilet,a nd they get a kick out of that.

Any possibility she is allergic to down, feathers, or whatever her sheets are washed in? (I'm grasping at straws here.)

I'm glad somebody else out there got rid of their humidifier--I keep getting lectures as to how my children need one, but I swear it always made their colds worse, and, since we got rid of it, things have been MUCH better around here!

[miamia]

Thanks Miamia...when will you get your urine test results?? Waiting sucks.

Are you taking anything for candida now?? The candida will be there until we get better from the Lyme.....or whatever else is contributing to weakening our immune systems and making us toxic. You gotta keep treating it or it will come right back. I'm going to be on the nystatin indefinately....plus other natural anti-fungals. I dont want any extra stress on my liver so I'm not gonna take diflucin. I never got a good response from taking it in the past.

If you wanna get back on antifungals....nystatin is very safe and can be taken long-term.

Heres some info on both....

Rachel-

thanks for the comparison info. Right now for the yeast I am taking Three lac and my probiotic. I had a really bad experience when i went on nyastatin last time - which at this time was a couple of years ago. For now though my main thing is the antibiotic shots. I am feeling pretty terribe but my doctor actually felt like this was a good thing when i described my symptoms he felt like they were very indicitive that the antobiostics where affecting the lyme so I guess that puts me in the herxing boat with everyone else (its getting very crowded but we will save a spot for you once you start the Nystatin) . I ahve no idea when the uroine test results will be back I sent them on Monday so I am gonna call igenix on Monday and ask them when they will be finished.

I am worried about the yeast but given tha tI took diflucan and then went straight to the 3 lac I am hoping I am keeping it under control to some degree.

when did you decide to start the nysatatin?

Miamia

[Rachel--24]

I guess that puts me in the herxing boat with everyone else (its getting very crowded but we will save a spot for you once you start the Nystatin) .

Thanks for saving some space for me! I'm sure I'll be joining you guys on the Herx boat very soon.

I havent got my nystatin yet...it sucks going through compounding pharmacy.

First, they dont deal with insurance so I gotta pay up front...and the freakin stuff is EXPENSIVE. Then I gotta fill out the paperwork (well ok....my mom does this part) so I can get reimbursed...but my co-pay for the compounded stuff aint cheap either.

I used to get it from the regular pharmacy for like $10.

I went to the compounding place yesterday and they said I better check with insurance first....to make sure they cover the meds. So I did that today (well ok...my mom did it ). I went back to get it filled and they're not gonna have it ready till monday.

It didnt take that long when I was getting my thyroid meds compounded...I figured I was gonna be able to pick it up in the morning....but its not gonna happen.

Also I wanted to know exactly whats the difference between the compounded stuff and the stuff I get from the regular pharmacy....aside from the fact that I have to pay alot more. The explanation I got didnt lead me to believe its really necessary to get it from the compounding pharmacy.

It sounded like its the same stuff...except theirs might be less bitter....and they measure exact amounts and put it in the capsules. OK....I dont think at this point I care too much about how stuff tastes.

I used to take nystatin powder everyday and it tasted like cardboard and I really didnt care. I measured it with a teaspoon and put it in water and drank it....and it costed $10. Now I'm paying $150 cuz its in pill form and doesnt taste bad?? Heck if I was worried about taste I could put the $10 stuff in capsules and swallow them.

So thats my rant for tonight. I cant start on the nystatin over the weekend now...so I'm just gonna go ahead and start on Monday. I feel sorry for all my friends and co-workers who'll be around me next week.... that is if I make it to work.

I still have nystatin in the fridge but its old.....very old.

I looked at the bottle and it says

"For use in extemporaneous preparation of oral suspensions & prescription compounding"

I bet its the same exact stuff....just being put into capsules.

I'm gonna bring it with me on Monday and ask them if its the same stuff.

[NoGluGirl]

Hey everyone, hope everyone is doing well today.

Flagyl DID suck...it sounds like you had a tough time on it too Congrats on getting through it though!!! I didn't make it through the whole amount of time that I was supposed to take it. Yea, it landed me in the hospital for 10 days and yea I have been through a lot, but I think EVERYONE posting on this forum has been through a lot. I just get sad when I think about it because you all seem like such GREAT people...you're all so caring and compassionate...why do bad things have to happen to such good people? Bummer.

And yea...was that Kaiser that you were referring to? They kept trying to tell my parents that I had a "psychological fear of foods that make people go to the bathroom". I was like YOU HAVE TO BE KIDDING ME...like seriously...is that a joke? Because that's the most ridiculous thing that i've ever heard a group of doctors say!! Thank goodness for alternative medicine.

OH, and to answer your question...I was taking Flagyl for the Babesia, and my homeopathic doctor though it might also go after some of the other parasites I have.

I'm sorry that you're eyes cause you so much pain, but it's kind of a relief that it's happened to other people too because I thought that I was going crazy! I actually thought that I was going to be blind...because I was kind of like...seriously...you never know what's going to happen next with me. LoL.

Aww well NoGluGirl, congrats on making it through the Flagyl. And I totally feel your pain on the whole bloating-below-the-bellybutton thing! How do you deal with it? I feel like it's so unnatractive, not to mention uncomfortable...I always want to wear clothes that hide it! I know it must be related to what im eating...i just dont know how to fix it.

Dear peacenlove_girl17,

I am surprised I survived those pills! LOL! I do not have a clue what to do with the bloating issue. No matter what, it seems to be awful. I tried giving up diet soda ( I only used to drink one daily) but that did not make a difference. I am like you, I just wear baggy clothes. Everything feels so tight! It is so uncomfortable! I feel like someone took an airhose, stuck it up my butt, and inflated me! (Feel free to laugh.) Of course, it would help if I did not have a period all the time, off and on, every freakin' day! Doing Pilates a few days a week does help, though. I have been so sick lately, I just have not been able to do it. I barely have to energy to brush my teeth. Doing the dishes is a herculean effort much of the time. I know eating foods like asparagus and cucumber can help the bloat. That yeast controlling diet is something I will have to ease into. Do you really have to give up coffee? It is like my best friend. Without it, I am useless. I have decreased my sugar intake, though. The next few days will be hard, because of all the rain. I hurt so bad and just want to curl up in a ball and not move. I force myself to, though. If you give in to the Fibromyalgia, it only gets worse.

Sincerely,

NoGluGirl

[NoGluGirl]

Yep, I really should have the walls checked for mold.

Yep, I just finished the PrevPac/Pepto Bismol treatment for h.pylori...heinous, lol. I haven't heard of Mastic Gum, but I have heard the broccoli sprout thing before so I think I'll get some tomorrow if Whole Foods has them. Funny you mentioned not being able to lose weight afterwards...cuz I should be losing lots of weight now that I've cut the carbs way way down, but I'm not, and in fact this morning gained slightly. Right now the doc has me on Prilosec OTC and double doses of probiotics for 30 days. I'm hoping the PrevPac/Pepto thing killed any of those little pylori dudes that were hanging around, cuz I really don't want to take that again, lol.

Dear dlp252,

I take double doses of Prilosec too! Now since going gluten free, I have improved to the point I do not have to take it right on the dot. In fact, sometimes I can get away with only taking one a day now. I had to do that horrible Helidac therapy four times as long as most people. I was on it for two months. It was absolute misery. Never again! I had to stop the first time, because I got too ill from the Tetracycline. I tolerate very few antibiotics. So, I actually had to go online and find my own combo of what I could take. I ended up taking amoxicillin, Flagyl, Pepto, and Prilosec. You know Prilosec is the only PPI that is cabable of killing h. pylori? Or maybe its Prevacid. I was on it, Aciphex, you name it! I have to watch my fat intake too, because I had my gallbladder out in 2003. The doc told me the tests did not show anything, so I was fine. I disagreed. I finally drove him crazy until he let me see a surgeon. It is a good thing I did. It got out in the nick of time! It turns out my gallbladder was severely inflamed and irritated, and could have ruptured had it not been removed! Doctors really seem to go to school for all that time for nothing! Paging Dr. Dipstick...paging Dr. Dipstick...! That sucks you gained weight. That feels like what I have had. The antibiotics started the trouble for me. After the surgery, I was losing weight, but then after those antibiotics, no matter how hard I tried, I could not lose a pound! My Thyroid went crazy, too. That could not be a coincidence. It is also very hard to watch your fat intake on a gluten free diet. Some of the specialty items we can eat are fattening. Gluten free bread has anywhere between 5 to 9 grams of fat per slice! It is too expensive to buy often, anyway. Not being able to eat yeast makes it even more difficult. Bloating is a major problem for Candida sufferers. Some gain weight once they go on the diet, some lose. It normally depends on whether the person is under or overweight. You may want to see if your thyroid is pokey. Until it is straightened out, no matter what, the person has trouble losing weight.

Sincerely,

NoGluGirl

[NoGluGirl]

Flagyl is sometimes used for Lyme, so it may have even been causing a herx. I get SICK anytime I disturb the bacteria.

Dear CarlaB,

That is interesting. I wondered. Herxheimer reactions can be extremely miserable. In fact, my doctor mentioned bacterial die-off can make you really sick. I did not know about that before. I suppose that is why they say you often feel worse before you get better! Still, whether or not it is Lyme is hard to say. Candida is extremely likely. My medical history is classic for it. Bacteria is dangerous in so many ways. Speaking of bacteria, those antibacterial soaps can spawn big problems with more than skin. These soaps also assist in breeding super bugs. Bacterium become resistant to the antibacterial agents, and before you know it, once it mutates and changes its DNA, they no longer respond to traditional antibiotics. This is very dangerous. Once again, this is just my nerdily way! I have a compulsion to research everything.

Sincerely,

NoGluGirl

[dlp252]

Dear dlp252,

I take double doses of Prilosec too! Now since going gluten free, I have improved to the point I do not have to take it right on the dot. In fact, sometimes I can get away with only taking one a day now. I had to do that horrible Helidac therapy four times as long as most people. I was on it for two months. It was absolute misery. Never again! I had to stop the first time, because I got too ill from the Tetracycline. I tolerate very few antibiotics. So, I actually had to go online and find my own combo of what I could take. I ended up taking amoxicillin, Flagyl, Pepto, and Prilosec. You know Prilosec is the only PPI that is cabable of killing h. pylori? Or maybe its Prevacid. I was on it, Aciphex, you name it! I have to watch my fat intake too, because I had my gallbladder out in 2003. The doc told me the tests did not show anything, so I was fine. I disagreed. I finally drove him crazy until he let me see a surgeon. It is a good thing I did. It got out in the nick of time! It turns out my gallbladder was severely inflamed and irritated, and could have ruptured had it not been removed! Doctors really seem to go to school for all that time for nothing! Paging Dr. Dipstick...paging Dr. Dipstick...! That sucks you gained weight. That feels like what I have had. The antibiotics started the trouble for me. After the surgery, I was losing weight, but then after those antibiotics, no matter how hard I tried, I could not lose a pound! My Thyroid went crazy, too. That could not be a coincidence. It is also very hard to watch your fat intake on a gluten free diet. Some of the specialty items we can eat are fattening. Gluten free bread has anywhere between 5 to 9 grams of fat per slice! It is too expensive to buy often, anyway. Not being able to eat yeast makes it even more difficult. Bloating is a major problem for Candida sufferers. Some gain weight once they go on the diet, some lose. It normally depends on whether the person is under or overweight. You may want to see if your thyroid is pokey. Until it is straightened out, no matter what, the person has trouble losing weight.

I'm not sure if prilosec or prevacid actually kill the pylori, I think they're prescribed to heal the stomach/esophagus, at least that's what I was thinking in my brain fogged brain, lol. I took Prevacid along with amoxycilin and clarithromycin and Pepto for 14 days, then he switched me to prilosec and the probiotics both of which I'll have to take for 30 days. Yep, I'm pretty sure I also have a thyroid problem and am a little shocked that the doctors who checked my adrenals didn't also check the thyroid. The BioSET lady is actually the one who is having me test the thyroid, lol.