Omg...i Might Be On To Something

[confusedks]

Yes, I spilled one of the vials and had to scoop it up off the bathroom floor ... as if the testing wasn't already gross enough.

Yuck! LOL!!!

I am actually feeling pretty good today. I got the LabCorp thing done...does anyone know what that's for? I have no idea...all I know is it was another blood draw...ouch!

I started to take prociotics and my tummy is actually doing a little bit better...as long as I eat really little amounts and SLOWLY! I guess I have a tendency to eat really fast

Birdy,

I'm sorry that happened with the Nurse at your LLMD's. I do agree though, definitely get a copy of the results and it is a clinical diagnosis...I think the main reason I got the dx though is because the rash...did you ever recall having one?

Kassandra

[AndreaB]

I started to take prociotics and my tummy is actually doing a little bit better...as long as I eat really little amounts and SLOWLY! I guess I have a tendency to eat really fast

I'm glad you are doing better today.

I have a problem with eating too fast too.

[mftnchn]

Hooray, Kassandra! Glad things are moving along and you are better today. Started the abx yet?

[confusedks]

Hooray, Kassandra! Glad things are moving along and you are better today. Started the abx yet?

Yes, I took my first Zithro at about 8 (45 minutes ago). We are waiting with baited breath to see if anything happens to me. I am a little itchy all over, but I don't know if that's normal for me...lol.

Everyone,

Anybody know how long it will take for me to herx? Is that different? Can anyone share their experiences!? Also, does it matter if I take Olive Leaf Extract with the abx or probiotics?

I am taking the probiotics in the morning on an empty stomach and then eating about 30 minutes later...then Olive Leaf 2 hours later. Then abx, then probiotics 2 hours later...then when do I do the olive leaf?

Kassandra

[Rachel--24]

OMG...you guys have been busy!!

I'm so far behind and theres alot I wanna respond to! I'll have to go back and do that tomorrow.

I feel like I've had Dr. appt.s almost every day. I had one last Thurs., Fri., Sat.....then again Monday as well as today. I go again Friday for my minerals IV. Sheeesh...I'm worn out and I still have 2 more appt.s which have yet to be scheduled!

So today I went back to HN and saw Dr Carrie. I havent been there in over a year. It was cool to see everyone and to give them my update of all I've been doing this past year. They know Dr. S. since they were the ones to refer me to him...I updated them on the rest.

My main reason for going there was to have her renew my script for the Ketotifen. I wanna get started on that asap since I have to be on it a full month before I can start the alinia. It was no problem...she called it in and I should have it by Friday.

The doctors at HN deal alot with parasite treatments so she was wanting to know Dr. Amy's plan for me. I told her she wants me on the alinia 3 days on and then 3 weeks off for at least 4 cycles. I asked her if that sounded right for getting to the parasite. She said yeah...thats pretty much how she does it as well.

She said the first round will be the roughest since alinia kills off alot... and then the rest of the rounds will get the rest as the eggs hatch.

The cool thing was that she knew alot about alinia. I saw that Laura and Mia didnt do too well with it. I sort of anticipate a rough ride with it but since I'm on it for only 3 days I dont think it'll be that bad. I think my body will have time to catch up.

From all I've read the drug is pretty broad as far as what it can kill off....I'm not really thinking its just gonna get one tapeworm. I'm sure there are other parasites and bugs its gonna hit....it seems like a really effective treatment. I think theres gonna be a big release of metals from this treatment.

I'm hoping that chelation will help deal with that so that nothing gets redistributed.

Dr. Carrie told me to drink alot of water to help flush the toxins out....plus I'll be taking my charcoal. Amy had recommended colonics or getting back to the enemas during this treatment.

Dr. Carrie was really great...she also wrote me the script for the alinia so I'm good to go with that.

She said I can keep her in the loop if I want...or just keep going through Dr. S. Its really easy to get in to see her and very affordable. I'll probably continue to see her for certain things. She was very helpful today as I got these things taken care of very quickly.

So she talked to me about the alinia for awhile...told me what to expect. Seems like its well tolerated by most...with very little side effects....which is pretty much what Amy told me as well. Amy said she uses is for the kids. It seems like most of the people on LymeNET did fairly well while on it...but I'm still preparing myself for the worst.

Dr. Carrie said its only been available here for 2 1/2 years but its been used in other countries for many years and its got a ton of research behind it. She said she was involved in some research project...she showed me a big binder she had on it. On the cover there was a looooong list of parasites...she said alinia hits every one of them!

She said its the best thing they've got as far as broad spectrum....but other drugs might work better targeting one specific type of parasite or bacteria.

It'll be exciting to see what it can do for me. I'm ready to start cleaning up my gut.

My friend said the worm (she calls it the "cobra" for dramatic effect) is probably wanting to die anyways....since all he gets to eat is beef and peas.

Yeah...me and the worm both!

Amy wanted me to start trying probiotics. She said that she has lots of patients (especially kids) who cant tolerate them but sometimes they're having BIG problems with say half a capsule...and then they are doing fine on 1/4 or less. She said she just wants me to start getting a little in...even if its just a little bit on the end up a toothpick.

Dr. Carrie agreed that a little bit is better than nothing at all. So I picked up a bottle today and she wants me to take what I can tolerate during those 3 weeks in between rounds of alinia.

So thats whats going on....it seems like I've been pretty much on the go for the past couple weeks. I need some rest!

Be back tomorrow (I have no appt.s ) to catch up on everything.

Oh...I'm definately a hugger.

I think it would have been weird to NOT hug Donna! I dont usually hug strangers but I dont consider any of you to be strangers. We have all gotten to be very close.

[AndreaB]

Wow Rachel! You have been busy!

Glad you had some good appointments and got some more info on the Alinia.

I'm up wayyyyyy past my bedtime......ok only about 1/2 hour. See everyone (who posts anyway) in the morning.

[confusedks]

Sorry to keep asking so many questions....BUT I was wondering if there may be some reason my LLMD didn't talk to me about an anti-candida diet while on abx? Hmm...should I start one anyway? Does that mean no fruit?

Kassandra

[mftnchn]

Its best to keep ahead of the fungal infections like candida, not to "feed" them. I'd cut back fruit if you can, but if that is all you can handle you may not be able to. My doc told me, one fruit a day, no sugar is best. Watching amount of carbs generally. After that, some folk also need to cut out moldy foods.

[miamia]

Kassandra-

Lab Corp does a bunch of tests but thats were i had the C D 57 done, maybe thats what you had

glad to hear you are feeling a little better. I defintly do better the slower i eat and small amounts at a time. I imagine this would be true for anyone with compramised digestive systems.

Miamia

[miamia]

ok so i decided that my bloating was definitly getting worse and causing me even more problems with my already problamatic br issues . I am starting the levaquin and am gonna stop the humaworm for right now. I made it half way through though. I contacted the company and they said it was no problem to stop it while i take the antibiotic and than re start it. I think this is the best thing becaus ei really want t clear picture of how i react to the levaquin and if i am taking both I will have a hard time distinguishing what is causing which symptoms.

Carla-

What sort of symptoms did you get from the levaquin?

[dlp252]

This is how it works for me. Generally, I wake up once though and go to the bathroom .... that's when I take the other half of the regular Ambien.

It sounds like it's working for you. It's good to get some sleep isn't it?

Well, it WAS. Didn't work quite as well last night...my schedule was really messed up though, and I didn't get to take my neurotransmitter supplements like I should an hour before bed.

Our performance ran late, so I finished about 9:15, then hurried off to catch the lightrail train...darned train was coming as I was still two blocks away, so I ran. THen thought, there's no way I can catch that train, so I'd stop, then run. I ended up making the stupid train (otherwise I would have had to wait another 30 minutes), but was pretty darned awake at that point. I took the Ambien at around 9:40 and went right to bed, but had a fitfull night, and finally just woke up at 3:00.

I am going to get the regular Ambien I think, that way I can take it when I wake up like that--I didn't feel like I could take another CR. My doctor said the regular Ambien is good for about 5 hours and the CR for about 7-8.

I am actually feeling pretty good today. I got the LabCorp thing done...does anyone know what that's for? I have no idea...all I know is it was another blood draw...ouch!

Yeah, I think mine was for the C D57 testing.

I have a problem with eating too fast too.

MEEEE TOOO!!!

Anybody know how long it will take for me to herx? Is that different? Can anyone share their experiences!? Also, does it matter if I take Olive Leaf Extract with the abx or probiotics?

Well, your herx might be a little more pronounced with the olive leaf. You'd basically be herxing from two different things...could make a little worse, but could also not I guess.

OMG...you guys have been busy!!

Ha, I was so bored yesterday and it seemed like no one was around to talk to.

So today I went back to HN and saw Dr Carrie. I havent been there in over a year. It was cool to see everyone and to give them my update of all I've been doing this past year. They know Dr. S. since they were the ones to refer me to him...I updated them on the rest.

I really like Dr. Carrie...there's another one there too, Dr. Genevive (SP?)...she's nice too, but I know Dr. Carrie better since I spent so much time with her as she injected my neck/shoulders to high heaven with sugar water.

Sorry to keep asking so many questions....BUT I was wondering if there may be some reason my LLMD didn't talk to me about an anti-candida diet while on abx? Hmm...should I start one anyway? Does that mean no fruit?

Hum, yeah, maybe a little strange it wasn't mentioned, or he may have figured that you were already having enough issues. I've also heard the one fruit a day thing. I have to really watch it though because I'm sort of like an alcoholic where anything sweet is involved. A little is just enough to make me want more, lol. I'd definitely keep the sugar/starch down to a bare minimum, especially on the antibiotics. Candida almost always goes with lyme/metals etc.

ok so i decided that my bloating was definitly getting worse and causing me even more problems with my already problamatic br issues . I am starting the levaquin and am gonna stop the humaworm for right now. I made it half way through though. I contacted the company and they said it was no problem to stop it while i take the antibiotic and than re start it. I think this is the best thing becaus ei really want t clear picture of how i react to the levaquin and if i am taking both I will have a hard time distinguishing what is causing which symptoms.

Aw Mia...I have to admit though that I am surprised you could make it half way. I took levaquin for only a week (for something totally unrelated to lyme), so I don't have much to contribute on that.

[NoGluGirl]

Dear Andrea,

Affording medical care is so expensive! Right now, just one person's bills are scary! I would not want to imagine how bad it is for an entire family with three children. Supplements are very pricey, but I really do not see any way around some of it. All you can do is get what you can when you are able.

Thank you for explaining the ASYRA more. I wondered what exactly it consisted of. I would love to do it, as well as ART and BioSet. Contacting Scott sounds like the best first step. It is doubtful anyone around here does it, though. Money is also a problem for me right now.

I think it is very possible that Sherry's massage stirred up her Lyme or metals. This makes sense. You know how Donna said a massage made her cry before? She was not in pain, but began crying during the massage. Her body must have needed to alleviate stress, and this is the only way it knew how.

Speaking of that, do you remember when we were discussing how you and T are very sensitive emotionally? Well, I read an article about that the other day. It was very interesting. I always have worn my feelings on my sleeve too, and taken the slightest thing personally that most people just take with a grain of salt. Genetics have something to do with it, but the crying making us feel better now makes sense. When we are upset, our tears consist of different chemicals that were bothering and causing stress on our body than those of happy tears.

I wish I knew more about Fry and some of these other labs. Some labs are supposed to be really good, but IgeniX is the only one I can go with right now. I am just worried about everything at this point. Speaking of, do we pay when we get the labwork done, and send it with the sample? Or, do I pay them ahead of time over the phone or Internet, then have the blood drawn and sent? My test kit should be in soon.

Is T doing better? I know she was suffering the other day from something. Did you figure out what it was?

These food sensitivities sure can be frustrating. One day you are fine, the next day you are miserable from the same food.

Dear Kassandra,

As Sarah said, the nausea and trouble breathing could have been an allergic reaction. However, in the event you have Babesia, it could be a herx instead. These things definitely take some work to figure out.

We all know how that is! It would be so nice if answers were not so complex.

Bloating really is an issue for me as well. The yeast is probably the largest contributor there. Any form of food or drink seems to contribute to mine. Lemon water helps some. I really cannot say any particular item worsens it more than anything else at this point.

Thank goodness you got an iron IV! That helped, I am sure. Your low ferritin will not bother you as much now. I bet that worm is eating it up! This makes a lot of sense. Parasites consume all of your nutrients and cause major issues from that alone.

Nystatin is a very good anti-fungal. I am afraid to try anything like that. Prescription meds rarely set well with me. I have drafted an herbal protocol that could work. Each week, adding a new supplement is going to gradually destroy the yeast so die-off is more tolerable.

Your liquid diet seems to be the only thing your system likes right now. I do better on solid food. Liquids tend to make me have more gas and cause nausea. They also do not satisfy me. I am glad you have lost weight, but I understand why you wish it had been while enjoying food and not eating it out of necessity.

You are right about the Candida Diet not allowing fruit. The natural sugars in them feed yeast. I am still eating fruit at this point, but am doing better than I was with the sugar overall. Having low glucose makes going low-carb a bad idea for me. I am not sure if you would want to do the Candida Diet right now, since it can be really rough on you. Doing it with a liquid diet would be very difficult.

I am sorry to hear you were feeling rough the other day. This week has been hard on me. Eating worries me a lot as well, because nothing seems to set well. It is so funny that your mother gets mad at you for not telling her you felt bad, when mine gets annoyed at me telling her! What is with people, anyway?

The olive leaf extract probably would be best taken with food. Many herbal supplements irritate the stomach if they are taken on an empty stomach. I too, am taking my probiotics on an empty stomach and find they work better that way. I am glad you seem to be tolerating them. Taking supplements two hours apart seems to be the normal duration of time between to be sure no supplement counteracts the other.

Dear Birdy,

Wow! I cannot believe your sister had more metals than you! That was unexpected. Is she older or younger? Environmental toxins are not easily escaped. What is the treatment plan for this?

My parents flip-flop as well on the Lyme. One second they think I have it, the next they do not. My mother has always assumed everything is just my nerves. That is such crap! I can be perfectly calm and horribly sick anyway.

Steroids were something I was on for asthma. I have not taken them in quite some time, and do not want to again if possible. It is understandable you may not have a choice with the EE right now. Hopefully, you will heal quickly. My cousin had to take oral steroids for a long time, because he had Guillon-Barre, a rare disorder that destroys the muscle fibers. He is still in a wheelchair, but has more upper body function.

I am happy to hear you finally got a hold of the nurse, even if you could not talk to the doctor! I cannot believe your Lyme testing was negative! It is difficult to believe. Fry is not the lab I am most familiar with, but I know IgeniX runs those tests as well. Right now, I can only afford the WBs from IgeniX. All I do is worry right now that nothing will show up once I get the test run.

Cashew butter in a peach smoothie sounds like an interesting combination of flavors. I might try that! I love nuts, but have to be careful because of their high fat content. Mold is another concern, but mostly with peanuts and pistachios. So far, I have been avoiding peanutbutter for a while, and have not seen a huge difference yet. The body odor has improved dramatically though, which I am sure was from the yeast.

These food intolerances you have definitely have a cause. We will find it! There is something making you react. I am having a similar situation. Nothing sets well anymore.

Dear Sherry,

IgeniX running your panel could not hurt. If you want to do it, I say go for it! The celiac disease-57 test might help assess your situation more, as well. Your doctor probably will agree to have it done. All you can do is try!

I wish I could tell you more about the LED, ASYRA, BioSet, and ART. I am just learning of it myself from everyone on here. What I have learned so far is that ASYRA is probably the most advanced. Metals, environmental toxins, and foods all show up on there besides other things. BioSet and ART both show what your body reacts badly to.

BioSet is done by computer, and ART is a form of Kinesiology. LED treatments are done by laser, greatly reducing the amount of time needed to desensitize someone's system. Doing so by supplementation can take up to three months. LED is more expensive up front, but in the long-run, is not as costly. The trouble is, when you do not have the money up front.

Thank goodness your herx/flare is better now! That sounded miserable. Massages can stir things up. Gua sha may cause Lyme or metals to be bothered, too. Let us know if your back starts hurting again after either of them!

That was a good thing to know about Samento. We often forget herbs can interact with each other, too. I never realized how much like medications they can be. At least the side-effects are not usually as bad. Medications just do not set well with me at all a lot of the time.

I heard the same thing about yeast. Fruit is not allowed on the strict protocol. I know some people who did not watch carbs, and did fine. I doubt they had a really bad case, though. The severity of the case determines this. I have a severe case, but my low blood sugar caused limiting carbs to be difficult.

Dear April,

The info on the anaphylaxis herb is great! Everyone here likely found it helpful. I really would like to get a copy of Buhner's protocol. The book you were reading about bacteria is another I would not mind getting. I will see if they have "Bacteria for Breakfast" on Amazon.

Yeast is something that causes huge problems. I have it pretty bad, but think I am finally killing some of it off. Bloating really is a major issue for me with it. I would wear at least two dress sizes smaller if I was not so bloated in my lower abdomen. This has lessened lately, but my nausea is still terrible a lot.

Children are very picky. I used to babysit a girl who would never eat any form of vegetable, except for a potato. However, this was only when it came in the form of a fry from MacDonald's. Some of the food tips you gave are great! I will keep those in mind, especially for when I get my wisdom teeth out. Also, thank you for the protein powder information.

Dear Donna,

I appreciate you giving us a rundown on BioSet and the other natural treatments. Those are kind of difficult to explain. It can get confusing. BioSet is doubtfully done nearby our town, but Indianapolis may have someone. First, I need to contact Scott to find out.

Sorry about the magnesium causing the D! I can see why your doctor is concerned. At least you found out what caused it! You may be okay again once the Humaworm is finished. It might have been just because you were taking them together.

Ginger made my heartburn worse when my gallbladder was bad. This is common with gallbladder disease. No one knows why. Maybe that is why it bothered your stomach? You have had problems with your bile duct, so that would make sense.

How exciting! You finally get to have your own big orange jug in February! I saw a guy with one at my doctor's office. They do chelation there. At least I know who to go to if I need it done!

OMG! You got to meet Rachel! It had to be awesome! This absolutely called for a hug! How could we not hug our fellow Rachelvillians? They are family!

That was weird about your shot spot being itchy. Then, it stopped after you posted! Like Andrea said, it may have been the adhesive. Gluten is on bandaids and tape. How cute that you had a Tweety bandage! When I got my shot the other week, I had Snoopy on my butt!

What a heartwarming story! Stories like yours about your friend at church are what the holidays are about! I am glad you got to see her. She seems like such a wonderful person! It is so sad, because so many people ignore the elderly.

Your doctor appears to have the right idea. Doing nothing is sometimes better. Right now, you have something going on you are not sure about. You do not want to irritate the situation further. The sleep issue alone is a large contributor.

Sleep is a rare commodity sometimes for me. People with Lyme all have insomnia or sleep issues of some sort. There are days I sleep a lot, such as twelve hours off and on. Other times, I barely sleep four hours. This can go on for several days to a week, which makes all of my other symptoms worse. Maybe the Ambien will do better for you the next time. Meanwhile, it is a relief you did not wander off to Mexico, because we sure would miss you around here!

Stool tests are gross. They are not fun at all. You have done a lot more than I have! I think I have done maybe three in my whole life. I tend to get constipated when I am supposed to do one, too!

Dear Carla,

Probiotics really do seem to do better on an empty stomach. The packages often tell you to take them with a meal. All of the ones you take sound great, but I cannot afford them right now. One thing is for sure, the s. boulardii helps the L. Acidophillus thrive. They did not seem to be helping as much as they could until it was added in.

I thought it was interesting when you said you felt worse even if you only did not take your probiotics one day. That is what happens to me. I get very ill. The probiotic helps some, because if I forget it once, I automatically suffer for it. Both parts of my stomach do not respond well to going without it.

Why are steroids bad for Lyme patients? Is it because they are immune suppressants? Or, is it due to Candida? I was wondering, because you did not say why specifically. This made me curious.

Prilosec is important for me as well. The nausea might have had to do with that and not just the new medication. If I do not take my medication on time, I often suffer the consequences. I wish I could get off of these things, but would have to go on HCl by a naturopath. PPIs are known to interfere with nutrient absorption and have an increased risk of stomach cancer for their users.

Treating Lyme is important, but I think it depends on whether it or the metals is a heavier burden. Perhaps that is what helps us decide which to treat first. In Rachel's case, metals were the larger issue. Every system is different. Since you already did other things to get rid of metals, Lyme was more of your trouble. I am amazed at how we all need different protocols.

What you said about sauerkraut reminded me about something. I read about a woman who went on business to Korea. She has a bowel condition that causes her horrible abdominal pain. In the midst of a presentation, it struck. One of the Koreans told her about Kim Chee, the spicy fermented cabbage they eat is good for it. Now she eats it daily, and is free from her miserable condition.

Fry must be a pretty good lab. I do not know anything about it, really. If Laura had not posted, I would not have known that much! Did you do your co-infections tests through them, or by IgeniX? You said you tested negative, but still had them.

I agree that Lyme diagnosis are primarily a political issue. Also, the fact doctors often ignore Lyme and other diseases is a factor. Physicians blatantly refuse to accept anything that contradicts what they learned in medical school, even if it is wrong. God complexes are way to common among doctors. I have lost pretty much all respect for the traditional medical community.

Stool tests are nasty enough. Add the fact you had to pick up a piece after dropping the vial, and that really increases the ick factor! I avoid doing them if possible. Blood tests I do not mind. Just do not make me pick up poop!

Dear Nyxie63,

Affording treatments is difficult, let alone diagnostics. Getting diagnosed is only half of the battle. I am glad you got in with an LLMD so quickly! Plus, the doctor is nearby! Lyme often causes adrenal gland issues, so it would not hurt to test for both. If you feel holding off on the testing is a good idea until the appointment, wait. Whatever you feel is best is what you should do.

Mold is taking over our home. It shows up in the toilet now! WTH? Bleach does not even kill it. This is like mutant mold. Your kitty might be suffering from the mold due to allergies. Our dog has the same symptoms.

Lemon water helps me as well. I have been losing weight as well, but the yeast is finally getting killed some. Alkalinizing my system has been a big help. Sauerkraut may help you if you do not have a yeast issue, it is difficult to say. I know what you mean about the probiotics. Without them, I am terribly sick.

Your dog being diagnosed with Lyme 7 years ago is proof the disease is in your area. This means you and your family may have it as well if they have been bitten by a tick. Animals are diagnosed sooner because their doctors are not dumb like ours. In fact, I am beginning to think I should go to the vet instead to get well. I am a dog in the Chinese zodiac.

I would not mind getting a juice for Christmas, either! I have had my eye on the Jack Lalanne Powerjuicer forever. My aunt has one, and she really likes it. Dad complains that it is cheaper to just buy juice. As you know, Dad knows so much about health considering he eats out five days per week, consumes nothing but processed junk, and smokes like a chimney. He goes through two cartons per week.

Dear tom,

Thank you for the belated birthday wishes! Hey, better late than never! My best friend forgot to wish me a happy birthday! Do you believe that? She is suffering with a cold, and the stress of the wedding coming up in April I am sure does not help.

It will be really neat if you and Andrea get to meet. I bet you hold the record for meeting the most forum members! You have met a lot of people that are not just from this thread! How cool is that? Are you up near your sister's until the end of the month?

Dear Julie,

The Chinese herb information for Lyme was nice to get! I am so glad you posted that. There are more options now. Herbal protocols look more favorable for me than antibiotics. Yeast does not like herbs as much.

You mentioned maybe needing a laxative while taking the Humaworm. Sherry mentioned licorice tea the other week having a laxative effect. Maybe you could drink that? I just thought I would mention it. She also said it helps with the nausea.

Nyxie's avatar is hilarious! I am going to have to say that expression all the time now! It is right up there with spinaching. Did anyone ever tell Kassandra and Birdy about that? I really love that story.

Well, the Cool Whip thing is confusing me. I ate it three days in a row, and was fine. The fourth day, I got sick after eating it. WTH? This happens a lot. It occurs with other foods, and on days when I had not eaten the Cool Whip at all.

Dear Laura,

Alinia probably is tough on your system. Many people do poorly on it, I am sure. It is a hardcore drug. Most people had to stop taking it due to it being too harsh. Did you find anything that did work for you that was tolerable?

It is good to know Fry Lab is a good one. I wondered if there were any other labs aside from IgeniX that specialized in tick analysis. They seem far and few between. Maybe more will spring up in the future. For now, we must go with what we know works.

Dear Mia,

Carla finished the Levaquin. Now she is taking a new drug. I hope you do alright on it. It is understandable you are apprehensive. Your system is like mine, it does not like much of anything.

Maybe it is a good thing you have not seen anything with the Humaworm. There may have been microscopic things come out. Perhaps eggs were in there, and nothing else. Is Gus gone? I know that amoeba was a problem for you. I am glad you can start it up again with no bad effects.

Alinia is hard on the system. Parasites being killed off does hurt you before it helps. Everyone seems to say that. I am terrified of what I could have stuck in my system. Worms would not be a shock.

Did you get your IgeniX results back yet? You mentioned having the WBs done again. We all are anxious to hear. They may not have them in before Christmas. It is difficult to say.

Dear Patti,

I agree that hugging is a part of a Rachelville gathering! I sometimes hug, and sometimes not. I am like Rachel, if I feel connected to someone, I will hug. It would feel more natural to hug someone from this thread than someone in my own biological family! Meanwhile, it is nice to see you on here!

Dear Rachel,

You and Donna got to meet! That is so great! It had to be nice. It probably would feel strange not hugging Donna! We really receive a phenomenal level of support here, and we are a family!

The appointment with Dr. Carrie sounded productive. She got everything taken care of quickly, which is great! Many doctors are not on top of things. You sure have been busy, lately! I do not know how you kept all of these appointments straight! Take a breather!

Now that you will be taking the Kito first, things should start to improve. Maybe the Alinia will not effect you as badly as it does some. Your system seems not to mind stuff that is non-herbal. Speaking of herbal, I was wondering if you know of anyone reacting to Italian Parsley? I think it might have bothered my stomach the other day. It was fresh.

Okay, here is the thing with the Cool Whip. I ate it three days in a row with no problems. Then, on the fourth day, I ate less than I had been eating and ended up sick. I am thinking this is a sign of Leaky-Gut. I am thinking rotating my foods may help this situation. I have had this happen with other foods as well. It can be perfectly bland and make me really sick.

Dear Sarah,

Kassandra did sound like she may have been having a reaction. Babesia can cause that as well, though. Keeping the Epi-Pen close is always a good idea. I hope she figures out which it was. All of this guessing can drive you crazy!

Sincerely,

Jin

[dlp252]

That was weird about your shot spot being itchy. Then, it stopped after you posted! Like Andrea said, it may have been the adhesive. Gluten is on bandaids and tape. How cute that you had a Tweety bandage! When I got my shot the other week, I had Snoopy on my butt!

What a heartwarming story! Stories like yours about your friend at church are what the holidays are about! I am glad you got to see her. She seems like such a wonderful person! It is so sad, because so many people ignore the elderly.

Yeah, the itching at that spot comes and goes...I had it when I woke up yesterday, then again in the afternoon for a long time. It's not bad today so far, but it comes and goes. Weird!

Yes, that friend is the main reason why I'm a lot more huggy NOW than I used to be, lol. She is a real southern lady and is just a joy to be around. If she met you today, she'd make you feel like she'd known you all your life. Her husband (the cute one I mentioned) died 2 years ago so it's been really hard for her. The three of us are "her girls", lol. My friend Becky is like a daughter to her...they live close so she physically checks in on her frequently.

Well, the Cool Whip thing is confusing me. I ate it three days in a row, and was fine. The fourth day, I got sick after eating it. WTH? This happens a lot. It occurs with other foods, and on days when I had not eaten the Cool Whip at all.

Okay, here is the thing with the Cool Whip. I ate it three days in a row with no problems. Then, on the fourth day, I ate less than I had been eating and ended up sick. I am thinking this is a sign of Leaky-Gut. I am thinking rotating my foods may help this situation. I have had this happen with other foods as well. It can be perfectly bland and make me really sick.

This happens to me a lot...I can eat something for a while and then BOOM, it hits me. This is one of the reasons why my now retired allergist wanted me on a rotation diet. Fortunately for me, it seems like BEEF is safe. Me and my slab 'o beef shall never be parted.

[Offthegrid]

Hi everyone! We're getting settled into the new house and loving it, although I can't wait until all the boxes are gone.

I have to brag a little bit.

The background: Been overweight my whole life. Hit 253 pounds last September (before diagnosis), although my highest weight ever was 270. I can't EVER remember being under 190 pounds, and in college the lowest weight I got to was 192.

When we moved, I weighed 205 pounds.

Since the move, I've lost another 10 pounds -- the scale said 196 today!!!!!!!!

I've been so much more physically active since the move because of all the work around the house, and eliminating potatoes really seems to be helping.

I'm really happy and can actually *see* a day when the scale does say 189. You have no idea how big a deal it would be for me to be 189. Plus, the size 14 pants I wear to work, which were once waaaay too tight, are now too loose, and there are all these clothes that had been packed in storage because they were too small that now I can wear. It is so exciting!

[NoGluGirl]

Dear Donna,

Itches drive you crazy! I hate them! The eczema on my hands is a real issue. Most of the time, things burn when I have tried them. Cortizone cream and even prescription cream hurt!

It is odd how your itchy spot does. I must react to the adhesives, because when the bandaid is off is when I begin to itch, too. How strange is that? The other week when I had Snoopy on me, I was going around mooning my parents "Look! I got Snoopy!" He fell off later, and I have no idea where he went.

What a shame about your friend's husband. Losing a spouse is very difficult. I am glad your friend checks on her often. It is wonderful she is so friendly! My grandmother is also very huggy. She is a Southerner, too. Just like Paula Deen!

Thank goodness beef is safe for you! I am not sure what the trouble is with me. Leaky-Gut is a good possibility for me. I just wish I did not have to play this "will it make me want to puke" roulette. If only I could afford the Enterolab stool test for the other intolerances. A rotation diet seems expensive, but maybe I could figure something out.

Dear Offthegrid,

What exciting news! I cannot wait to hear more about the new home! Is it all decorated? We actually did not get our tree up due to having nowhere to put it. There is just too much clutter!

I am so glad you have lost some weight! That is terrific! Who would have thought potatoes would be the answer to so many things? My best friend has always had trouble with her weight. I wonder if she has food intolerances, since she is of Irish and German descent.

Sincerely,

Jin

[Nyxie63]

Jin,

I love reading your article. You always catch things that I miss and have a great point of view, and a positive attitude. Don't want to ask how long it takes you to type all that.

I already know I have adrenal issues. Problem is they're not being treated. My current doc doesn't think its bad enough to do anything about because the report came back as "borderline", in spite of where the levels actually are (I hate having to educate my docs). He gave me a bottle of adrenal cortex after the third visit of bugging him about it, probably to shut me up (didn't work). My positional BP drops anywhere from 10-20 points upon standing and I fail the flashlight/mirror test every time. This really needs to be treated first so I can start up the thyroid meds again.

I really think I'm on the right track (finally!) with the whole Lyme thing. I was reading over at Lymenet and came across this article: www.cassia.org/essay.htm. I couldn't believe it! So many of the things that are currently going on with me are in there! The thyroid, the cysts, the mental stuff. Everything! I just kinda sat there for awhile in awe. Think I'm going to print out a copy and give it to my mom, with a lot of things highlighted. She thinks I'm being a hypochondriac, which is probably where a lot of the self-doubt about all this health stuff is coming from. Guess it doesn't matter how old we get, mom's will still be themselves.

Ugh! Mold! Still haven't made it up to the crawlspace yet. That's so weird that bleach won't touch yours. Maybe it's the "bad" kind of mold (not that there are any good kinds of house mold). Strepticomethingorother. I've heard there's something special you have to use for that. Are you sure its mold in the toilet bowl? If you have a lot of manganese in the water, that can cause black discoloration as well. High levels of manganese wouldn't be helping your health at all either and can screw up your iron levels. Can you get the water tested anywhere?

Stopped in at the health food store yesterday. That's where I get all my supplements from. I'd never taken a real look around at their food aisles. Turns out they have a huge selection of gluten-free stuff! I went just a little nuts... only a little. Also picked up 2 more bottles of digestive enzymes. One for home and one for my purse.

Our vet is awesome! I adore that woman! She's not only thorough, but she gives options based on the level of health improvement possible as well as taking the financial impact into acount. And she gives multi-critter discounts when we bring the crew in for their checkups! Hubby and I tend to adopt critters that other folks don't want. They're old, have health problems already, have behavior problems, strays off the street, etc. Right now, we only have 3 cats and a dog, however, at one time we were up to 8 cats and 2 dogs. A lot of them are already seriously ill when we get them. What we try to do is give them a good home for the remaining time they have left. Since we don't have kids, critters get the benefits.

Went out xmas shopping yesterday. OMG! Felt like I'd been hit by a truck by the time I got home last night. This morning, I only feel like I got hit with a couple of bicycles and a wheelbarrow. Guess that's an improvement. Now I remember why I had to quit my job at the florists earlier this year. After about an hour of walking, my knees and hip joints hurt sooo bad! Have to go out again today, but at least it'll be a much shorter trip. On the bright side, everyone was fairly pleasant which was a nice surprise considering how crazy people tend to get this time of year. I also managed to get a LOT done. Yay!

[Offthegrid]

Jin,

No, sadly, we're probably not getting a tree this year. We redid the office first, so stored virtually every box that didn't go upstairs into the living room. Heck, we can't even watch TV yet (although we do have cable) and sit down at the same time. We do have a miniature tree, though. We bought lights, but they aren't up either. Maybe on Sunday?

In fact, I'm getting my first chance to go Xmas shopping today because every other night I was needed to help around the house. Fortunately, I've had plenty of time to think about exactly what to get people (don't have too many to shop for).

Oh, my weight loss got me thinking: I don't know where to shop for clothes anymore! I used to buy virtually everything at Lane Bryant, but now I can't shop there because everything is too big. I know the size 14s there are bigger than size 14s in other stores, though. So it was frustrating at 205 pounds because I was too small for Lane Bryant, but too big for anywhere else. Maybe now I can fit into a regular store's clothes. Anybody have any suggestions?

[Nyxie63]

Offthegrid,

Congrats! Wow! That's fabulous!

[dlp252]

Offthegrid!!! CONGRATULATIONS!!!!!! That's major!!!! A major accomplishment! Very exciting. I put on a lot of weight after my father died (almost 50 pounds!) and had that for a few years, then lost all of it and more (well, except NOW, lol...got an extra 10 pounds from several cookie binges in August)...my favorite places to shop...just about anywhere, lol. It was really fun to be able to wear "normal" styles again and to NOT have to think about covering up. I find JC Penney has some good selections of basic stuff, but a lot of their brands run smaller than some of the larger department stores like Macy's.

Jin,

I know you are limited in the kinds of testing you can do, both because of where you live and your finances, but I think that BioSET did more to identify which foods I was sensitive to than the Enterolab (which only tests for a couple of things) and even the elimination diet. With the elimination diet, I couldn't find the "base" safe diet because everything that was supposed to be safe wasn't. BioSET identified all those safe foods, and then from there I could try adding new things as I was desensitized to them. As hokey as it all sounds, it was very accurate for me.

Nyxie,

Other than the supplementation, I basically just treated the adrenals myself, but it WAS nice having the guidance of a doctor who KNEW about adrenal fatigue to guide me. I also failed the standing BP test and the flashlight thing, lol.

I'll have to look at that website tomorrow...my home dial up is TOO frustrating, lol.

PS, I think you're on the right track too.

[Ridgewalker]

So it was frustrating at 205 pounds because I was too small for Lane Bryant, but too big for anywhere else. Maybe now I can fit into a regular store's clothes. Anybody have any suggestions?

Congratulations on the weight loss!!! I'm at a difficult, in-between size as well. I like Old Navy, Target, Kohl's, The Gap, and Cato.

Nyxie,

What did your docs ever say about the low enzyme levels? Did I miss that?

[NoGluGirl]

Dear Nyxie63,

I am glad you enjoy my column! A lot of people are surprised at the details I pick up. If it were not for coffee, I probably would not know anything. I would be completely useless! Sometimes my column takes an hour, other times closer to two to type. Of course, now that the weather is cooler, it takes me longer due to the computer being in the basement.

I try to stay as positive as possible. Humor is essential for me. Making fun of my relatives helps me deal with their lousy attitudes and complete insane behavior. I am still waiting on that moment when I am told I am adopted, and that I am not really related to any of these people. My brother keeps hoping for that, too. Maybe this Christmas will be the one!

Doctors definitely tend to ignore important issues. The adrenals are often overlooked. Mine probably are taxed. My BP tends to run low, and I nearly blackout when stretching or standing up sometimes! It is scary. There is a condition called Neurally Mediated Hypotension. I seem to have it. Eating salt helps some.

I have had to educate doctors in the past, and they did not appreciate it. One must desire knowledge. Doctors appear to prefer ignorance. Borderline test results are often neglected with the Thyroid as well. Many women have low hormone levels, indicating an underactive gland. Yet, doctors will not treat them, and their fatigue and other symptoms worsen.

I could not believe all of the issues I have associated with Lyme, either! When I read the list Carla gave on the Lyme Thread, I found I had 53 of the 75 listed. My emotional sensitivity may be linked to that. I can understand the mother accusing you of being a hypochondriac. Mom treats me the same way, as she pops a ton of pills and complains of how bad she feels. Some people are just pushing you to smack them, you know?

We have not had our water tested, but I think it is mold. Are you talking about Stachybotrys? It is a toxic mold that is really bad to have in your home. I would not be surprised if it was. What is in the toilet looks like spores.

Testing would be terribly expensive. It is $600 to have the environmental agency test your home for mold.

Right now, we literally have $50 in the bank until Friday. Manganese is not totally out of the question, considering there is also a dirt-like substance in there. Regardless, something needs done. Our toilets have not been flushing well on top of this, and I think this stuff has something to do with it.

Discovering all of the tasty wonders at the healthfood store is exciting! So many wonderful gluten-free goodies to sample! I love those Katoos! They are just like oreos! My brother is hooked on Kinnickinnick vanilla doughnuts. He cannot wait until his pastries come in again, because he has gone through all of the withdrawal he can take!

Dear Offthegrid,

Do not feel bad. At least your house is cluttered for a reason! Ours is just messy. I am embarrassed to have anyone over. My best friend and her fiancee came the other day, and we exchanged gifts. I got a Yankee scented candle. It is wonderful, and is called Autumn Wreath. Due to my chemical sensitivities, I cannot use it all the time, but it is great to get in the holiday spirit!

Our shopping has been put on hold due to the paycheck issue. So was my hair, I am sorry to say. That means I probably will have to wait until late this month to get the IgeniX blood draw done after the test kit comes. I still have no clue what to get Dad. He is hard to shop for. I will think of something!

The clothing is a predicament! A happy one, though. I am kind of between sizes, and always have been.

That makes finding anything that fits difficult. You may find items at the regular store that fit. Let us know how clothes shopping goes!

Dear Donna,

How affordable is the BioSet? Are there payment plans? How do I get in touch with Scott? I suppose I just e-mail him from the www.thebetterhealthguy.com site. BioSet does seem better than these other methods.

Sorry you have had such a hard time getting off the extra pounds from the cookie binges. That has to be frustrating. Since giving up chocolate and peanutbutter, I have lost weight. I do miss them a bit, though. The milk chocolate is more of a problem, but brownies that are dairy free are okay.

Shopping is great! Whether it is online or in person, I love it! Kohl's, Maurice's, Claire's, and Hot Topic are some of my favorites. If I were rich, I would get so many more things! Incidentally, I have made a list of items I would get upon becoming a lotto winner.

Dear Sarah,

I am not really heavy, but am in between sizes a lot. I always had that trouble, even when I was skinny. Don't you hate it when catalogs only have whole sizes for shoes? Then you have to figure out whether to get a smaller or larger than normal shoe. Even worse, they do not tell if their sizes run small or large.

Sincerely,

Jin

P.S. Has anyone heard from Kat, Claire, Lisa, Kristina, Susie from the UK, Judy, or Ami?

[Nyxie63]

Nyxie,

What did your docs ever say about the low enzyme levels? Did I miss that?

She didn't say anything about it. I pointed it out to her and it seemed to be a non-issue. She was more concerned about the chronic abdominal pain, thinks its dysbiosis (localized in one spot? ummm... ok), and ordered a stool test for bacteria and parasites. We only had a 1/2 hour to go over everything and it was a new patient appt, so we were really pressed for time. I'm getting a lot of relief from taking the digestive enzymes, so my proof is right there. I've decided to put off that and the other testing she ordered until I see the LLMD on the 28th.

[NoGluGirl]

Dear Nyxie63,

I am glad the enzymes are working so well. Dysbiosis may be some of my trouble, too. It is difficult to say without a test. Right now, everything just seems out of whack. Your appointment sounded productive, despite it being abridged.

Sincerely,

Jin

[dlp252]

How affordable is the BioSet? Are there payment plans? How do I get in touch with Scott? I suppose I just e-mail him from the www.thebetterhealthguy.com site. BioSet does seem better than these other methods.

...

P.S. Has anyone heard from Kat, Claire, Lisa, Kristina, Susie from the UK, Judy, or Ami?

It's expensive...the initial session was almost $200, but it was very informative. The treatments are $75 each, BUT they are all covered by my insurance. I have to pay up front, but my insurance company has so far reimbursed me for all of them. What's more expensive are the supplements and there are LOTS of them--no reimbursement there, lol. Scott doesn't do BioSET but he MAY know of someone who does in your area, and prices in your area might be different...we live in a kind of expensive area here.

I haven't heard from Claire since she was here...she briefly came back on the thread right after that, but I haven't heard from her since. I haven't seen Susie around the boards at all lately. I've seen Ami on a couple of threads. Haven't seen Kat around either. I think Lisa can't get computer access much. I think I've seen Kristina on a couple of other threads too, but not sure now. Yeah, where is our Judy?!

[melmak5]

TEST RESULT QUESTION

May 07 - TtG positive (58 - normal is <20)

June 07 - elevated IgG gliadin antibodies

*Started Gluten Free Diet*

October 07 - IgG gliadin antibodies HIGHER than in June

November 07 - TtG negative

Would would you say/do?

(FYI - I have not gotten "better" on the gluten-free diet, things have been a roller coaster of bad to worse to ok to worse, etc.)

I am utterly confused, as is the doctor. I have an endoscopy scheduled for December 27th - the doctor is going to take biopsies no matter how the intestines look because in addition to villi damage, he is looking for abnormal T-cells.

I am going to go through with it, but I am really confused as to whether or not it is time to legitimately say "this might not be celiac"