Omg...i Might Be On To Something

[Green12]

paula

who is also on her way to get hair dye. Im so excited i can dye my hair again lol

She took the random strands from the back of my head, just not from the nape of my neck. The first analysis I did my nutritionist cut a huge chunk right at the nape, it was totally noticeable when wearing pony tails

I was lucky I hadn't done any highlights for 3 months when she took the hair for the analysis. I had stopped, trying to eliminate as many toxins as possible.

Kassandra, well said about coping. I think we all just have to cope the best we can.

Little Miss, if i can just add one piece of advice.....I got sick pretty young, I was just into my freshman year of college when a handful of symptoms that had come and gone over the years decided to hit me full force all at once.

This was back in the 1990 and we really didn't know much back then about food intolerances and so I was on a special diet that everyone thought was weird. Weird things were happening to my body that I had never heard anyone else having to deal with. Symptoms that were labeled as Chronic Fatigue had me bedridden...I was pretty isolated and not getting any understandinf from friends/family.

I would have to say don't isolate, even with these life restrictions of chronic illness there is lots of life to be lived. It may be on a smaller scale, but there is still life to be lived.

Support groups, or threads like this can be a godsend, so that you can have people in your life that are going through the same or similar things.

[dlp252]

I would have to say don't isolate, even with these life restrictions of chronic illness there is lots of life to be lived. It may be on a smaller scale, but there is still life to be lived.

Support groups, or threads like this can be a godsend, so that you can have people in your life that are going through the same or similar things.

Excellent advice miss Julie Marie!

[confusedks]

I would have to say don't isolate, even with these life restrictions of chronic illness there is lots of life to be lived. It may be on a smaller scale, but there is still life to be lived.

Yes, exactly what I was trying to say. You just said it better! Just to know that there are people out there who care about you is very helpful. Again, if you want to PM me, feel free to do so. Also, do you have other Lyme teen friends? I talk to a friend who lives fairly close to me, we talk on the phone at least once a week. It's great to talk to someone my age, who understands herxing, etc.

[ShadowSwallow]

My hubby is going to Cleveland tomorrow.

That's too funny!

Oh and one more question aimed toward Kassandra and other young lymies...I dropped out of college (for now!, and it's justified medically now that I have the positive lyme blood test) and now I'm kind of panicking...because most days I feel kind of terrible (I know it'll get worse on the antibiotics though...which I start this week, Nistatin was today...then 2 days later Biaxin and 2 days after that Docycycline) so I'm just stuck on the couch, and mentally that's killing me because I feel like I'm missing out on these years that are supposed to be so social and fun, where I'm supposed to be growing and establishing myself. I'm 19 and I can't even drive yet. How do you guys deal with this? I don't even know what to do with myself all day (though I know once the antibiotics kick in I won't worry about this as much).

I usually push myself too hard when I really want to do something, then crash, then complain to my (very patient) friends, then repeat. Not that I'd recommend this, of course. I'm still dealing with accepting my limitations, and discovering what they really are, and working out how to find the balance between being satisfied with my life now and getting as healthy as possible as quickly as possible so that I can enjoy life to the fullest later. It's all part of a long process that won't happen magically or overnight... which makes it more and less difficult in different ways.

I would have to say don't isolate, even with these life restrictions of chronic illness there is lots of life to be lived. It may be on a smaller scale, but there is still life to be lived.

Support groups, or threads like this can be a godsend, so that you can have people in your life that are going through the same or similar things.

Thirding this excellent advice!

Everyone,

The appointment with the dr went very well. He's not going to be able to help me very much until I'm done with the lyme treatment, but he should be very helpful in strengthening/supporting my immune system afterwards. (He has some very good credentials, too, but I don't quite want to say them incase I identify him. ) He says he usually looks for bugs instead of treating the toxins caused by bugs... works on killing them, then doing immunomodulation to strengthen the immune system (and regulate its inappropriate overreactions) so that the body's able to detox the toxins itself. It's very interesting. He recommends that once I'm done with the Lyme therapy I should get the Dr's Data complete stool analysis.

The immunomodulation peptide therapy is very... interesting. I've gone through a course of this before (didn't stick because of the undx'd lyme, etc) and it's very cutting-edge and used openly by drs in Europe, but is technically illegal in the US. Here are a few articles I dredged up about them... I haven't read through them myself, though. Very full of scientificness. He also said that my plan for the treatment of the Lyme looked very good, so he would keep his hand out of that.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Oh, I got my lab results faxed into the office while I was there, and my CD57 came back at 25. Guess I really can't ask for a more definitive dx of chonic lyme between herxing, Ehrlichia, and this.

Oh... I also forgot to mention that a while back I got the No-Phenol and tested well for it. At this point I'm off of it... a different digester of Cellulose testes better right now. I'm probably going to toggle between the two (No-Phenol and GastroCalm (by BioSet)) to help keep the liver supported and the candidia under control.

I also started a liver support supplement (basically a bunch of vitamins and minerals... with vitamin Bs! I can tolerate them now! ) that's been working very well (NutriClear by Biotics). It's supposed to be scooped out... but I can only handle 1/4-1tsp. But this is very exciting, and helpful. I can finally provide my liver with the nutrients it needs to function. The SpecraCell testing I had for vitamins came back with me deficient in every form of B vitamin. Does taking these put anyone else to sleep?

Birdy

[confusedks]

Kassandra,

You are SO strong. It looks like you're handling this SO well. I'm glad to hear that you've got some friends supporting you too. My friends are all away at college right now, but I've got about 5 or 6 checking in with me and sending me facebook messages. It's just hard because like you said, you want to just be a "normal teenager"...like I wonder what's going to happen to my future...when will I go back to college...will I be behind...will I ever meet someone that I could date or marry? Hopefully getting rid of this lyme (and metals) will help me to restore my health and I'll be able to get back out there. In the meantime though, I can't help but feel isolated and stuck. But I have to take your advice you guys...I know you know what you're talking about

...

Sooo...I'm wondering....do you all feel like you've made progress with your health? How long have you all been at it? And for those of you with Lyme...I'm wondering...have your food sensitivities cleared up (Carla, I know yours have ) and if so, how long did it take?

Thank you. I'm only strong for other people! LOL! I understand the isolation thing, all too well, unfortunately. I am actively working on talking to some supportive people about things, instead of going through things on my own. For example, I was talking to someone about my port surgery, and I don't know her well and she offered to help me in any way she could...she said she'd take me to the hospital, etc. if I needed.

Before I talked to her, I felt totally like I was in this all alone. But even though she doesn't have Lyme and doesn't understand what's going on, she was very sweet. For me, I have to try to understand that people try to do their best at trying to tell you they "get" how you feel. They don't get it, but they are just trying to be understanding in the way they know best.

We really don't have to walk through things alone. We just think we do. The hardest part is reaching out...picking up the phone, writing emails or anything else.

....

As for progress...I haven't made much progress since December. That is why we're going with IV's. I do realize that most LLMD's would wait longer, but mine doesn't want to wait. I have made progress in the sense that we know what's *causing* things. I had all these strange blood work results, symptoms, etc. that no dr could ever figure out why they were screwed up.

My health hasn't really changed much. Again, this is why we're going with IV's.

[confusedks]

Has anyone here taken Flagyl? Or Diflucan?

I've only taken 2 doses, last night and this morning and WOW!!! LOL! I'm already herxing hard. I went to my uncles house for an hour and had to leave because I was getting so dizzy, headachey, etc.

Anyone get that feeling where you're not in your own body? Like, I'm watching me drive, walk, etc. but I'm not doing it? (Does that make sense? ) It's so strange.

[ShadowSwallow]

Anyone get that feeling where you're not in your own body? Like, I'm watching me drive, walk, etc. but I'm not doing it? (Does that make sense? ) It's so strange.

Yep... I get that sensation... It's so weird. Once I was sobbing and yet part of my mind just stepped away and was observing and commenting on what I was doing perfectly calmly and rationally.

[confusedks]

Yep... I get that sensation... It's so weird. Once I was sobbing and yet part of my mind just stepped away and was observing and commenting on what I was doing perfectly calmly and rationally.

Glad to know I'm not alone! LOL! I was sitting in horrible traffic and I was like "Hmm, look, there's lots of cars." Usually I get really annoyed at traffic, but I just kinda looked and thought "oh well!"

Also, there was a sudden death in my family. So I will be going to a funeral soon, but not to play the flute. Same think about watching myself feel...it hasn't hit me that this person died. It's so surreal. I feel like it's a dream I'm living in.

[ShadowSwallow]

Also, there was a sudden death in my family. So I will be going to a funeral soon, but not to play the flute. Same think about watching myself feel...it hasn't hit me that this person died. It's so surreal. I feel like it's a dream I'm living in.

Oh, Kass, I'm sorry. :( Yeah, it usually takes a while... sometimes even months, for that to sink in (at least for me).

[AndreaB]

Oh and I figured since I went all emotional on you guys, I should probably at least tell you my name It's Candice.

Good to formally meet you Candice.

Oh, I got my lab results faxed into the office while I was there, and my CD57 came back at 25. Guess I really can't ask for a more definitive dx of chonic lyme between herxing, Ehrlichia, and this.

Wow! If I remember right, you and Mia are the lowest on this score. Sounds like you had a really good appointment though.

Kassandra,

Sorry for your loss and the herx from the flagyl. Hope tomorrow is a better day for you.

[Guest LittleMissAllergy]

Has anyone here taken Flagyl? Or Diflucan?

I've only taken 2 doses, last night and this morning and WOW!!! LOL! I'm already herxing hard. I went to my uncles house for an hour and had to leave because I was getting so dizzy, headachey, etc.

Anyone get that feeling where you're not in your own body? Like, I'm watching me drive, walk, etc. but I'm not doing it? (Does that make sense? ) It's so strange.

OMG...last summer I took Flagyl because my doctor thought I just had some parasites, and I got soooo sick that it landed me in the hospital for 10 days!!! This was before we knew I had lyme, so no one could figure out what was going on.

I'll be thinking of you while you go through all of this! Email me sometime if ya need to talk, and I'll do the same

[Rachel--24]

So is there a way to find out how many points you have against your driving record, lol?

I found out when my insurance went up to $400 a month.

I have AAA...I think they're more expensive....actually I think they're feaking out of their minds for charging what they charge! OMG...I got a couple tickets.....you'd think I've had a ton of accidents or DUI's with what they're charging me!!

Yeah...I would totally switch insurance companies if I was in my right mind.....but obviously I'm not.

Sorry about the wheels not being available. We'll miss seeing you during the day. I hope you figure out something safe to eat......hot dogs definately don't sound like they fit in that category.

Theres alot to catch up on when I dont come home for lunch!

Ok...I couldnt get the hot dogs out of mind. I was like..."I need HOT DOGS!"

I bought a pack of Oscar Meyer dogs and a pack of buns. I ate 4 hots and 5 buns.

I got a little brainfoggy from the buns but I seem to do ok with the hot dogs. I hate when I get spaced out because I end up getting really quiet...I'm in my own world and not really communicating all that well.

As crazy as it sounds I handle Oscar Meyer hot dogs WAY better than any of the "healthy" brands I've tried at Whole Foods.

I'm guessing its the "spices" and other ingredients that are in all of the ones I've tried previously. They all have ingredients like spices, garlic, honey, etc. The Oscar Meyer ones have a bunch of chemicals...which apparantly are better for me than the high salicylates and sulfur ingredients.

Seeeeee....my body has ALWAYS done better on the crappy stuff. It does NOT like healthy foods!! No veggies, no fruits, no herbs, no spices.....but yeah.....gimme some processed chemical loaded hot dogs and I'll have no problems with it. WTH??

Maybe its time to go to McDonalds.

If you wear pony tails, be sure it's not from the very bottom or it will be obvious.

Yup....I can verify that this is very true.

Dont cut out big chunks of hair from the nape of your neck if you wanna wear ponytails.

Thats exactly what I did...but at the time I didnt really care about anything because I was so sick. It took a long time to grow back and I did wear ponytails all the time....I just didnt care all that much that I had a big chunk of very short hair on one side of my neck.

Has anyone here taken Flagyl? Or Diflucan?

I've taken both. The Flagyl was heinous. I was on it for two weeks....about the 3rd day on it I woke up with the whole room spinning, I had no balance, was very nauseaus and had to hold onto the wall because I was so dizzy. It was not fun. I was only like that for a few hours but the rest of the two weeks I felt really depressed and "yucky".

Diflucin never did anything to me...except it *did* take care of a couple spots that had been on my skin for over a year. I guess they were some type of fungus.

Glad to know I'm not alone! LOL! I was sitting in horrible traffic and I was like "Hmm, look, there's lots of cars." Usually I get really annoyed at traffic, but I just kinda looked and thought "oh well!"

Yeah....I used to be like this ALL the time. I was just totally zoned out. When I was really bad off I couldnt process certain things...like when you're driving... red means STOP....green means go...basic stuff like that wasnt coming to me very quickly.

I was running red lights and under normal circumstances having several cars headed straight toward me would totally freak me out....I'd be scared and then upset if I did something like that! But noooo....I was just totally unfazed by the whole thing....like "Oh...I just went through a red light...cars almost hit me....oh well." There was absolutely no reaction....no fear....no concern...NOTHING....I just kept driving.

I was totally aware that my response was not normal...I knew that it wasnt right and I knew that I was a danger to myself. That was the thing that made me decide to go back on disability and stay on disability until I got things figured out. By the time I went back to work I wasnt having those problems anymore because I'd totally changed my diet.

[CarlaB]

will I ever meet someone that I could date or marry?

Might be time for my story again.

I met my husband in college. A couple weeks later, I had a few drinks, then the next day was so sick (as many of you other Lymies understand). Hubby walked clear across campus (a half hour walk .... I had a car and wouldn't go see him 'cause I was too sick) to come see me. He made me go for a walk. When I was just lying around later, he had his first thought that he could marry me!

Taking care of me was his calling! We actually didn't start dating until about a year later than this .... back then we were friends. But it's funny to me that the first time my Lyme showed through to him was the first time he thought he could marry me.

So, the moral of the story is, yes, there is a man for you.

Sooo...I'm wondering....do you all feel like you've made progress with your health? How long have you all been at it? And for those of you with Lyme...I'm wondering...have your food sensitivities cleared up (Carla, I know yours have ) and if so, how long did it take?

So much progress it's unbelievable!!! I'm finally resting for the first time today and it's 9:15. I'd say I'm about 80% of normal, but I have had a few months where I've been 95% of normal.

I started treatment in Jan. 2006, I was feeling pretty good by summer. I backslid again in the fall .... got diagnosed with bartonella and made incredible progress after that. The reason I backslid is I had been on an abx for something else in the summer that also works for bart ..... so that's how we knew I had bart ..... kind of by accident.

Has anyone here taken Flagyl? Or Diflucan?

I've only taken 2 doses, last night and this morning and WOW!!!

I've heard it's tough. I had a very difficult time with Tindamax, so I think I know what you're talking about .... and I was doing Tini when I was about 95%, it would knock me down to about 50%. Rough drug!

Anyone get that feeling where you're not in your own body? Like, I'm watching me drive, walk, etc. but I'm not doing it? (Does that make sense? ) It's so strange.

Oh, yeah, very odd feeling.

Glad to know I'm not alone! LOL! I was sitting in horrible traffic and I was like "Hmm, look, there's lots of cars." Usually I get really annoyed at traffic, but I just kinda looked and thought "oh well!"

I knew my bart was coming back when I was looking at cars going through the light I was headed towards and wondered why they weren't stopped ... the light I was approaching was RED, I thought it was green ... fortunately, I figured it out and stopped. I knew if I got worse cognitively I would have to stop driving ... but I went back on meds and am okay now.

Also, there was a sudden death in my family. So I will be going to a funeral soon, but not to play the flute. Same think about watching myself feel...it hasn't hit me that this person died. It's so surreal. I feel like it's a dream I'm living in.

I'm sorry Kassandra. I actually am going to a funeral tomorrow. A lady in the choir died .... very sad. She had colon cancer. She and I understood each other because we both understood living with long-term illness and she was sick much of the time from chemo. I'm playing flute. Was this a person you were close to?

[mftnchn]

Has anyone here taken Flagyl? Or Diflucan?

Yes, both. Diflucan has been fine, not as effective as lamisil for yeasts. Flagyl...well, always an upset stomach with it. And herxing. Fatigue, brain fog and stuff. I almost always pulsed it, two days a week. Once I did 2 weeks, my doc thought I would push through the symptoms. I did, it got much better, but was pretty bad initially.

My hubby and I used to say I was "flagylating" on those couple of days.

I can no longer take this after my liver enzymes went up last fall, and I didn't test well for it with ART either.

Sherry

[tom]

Anyone get that feeling where you're not in your own body? Like, I'm watching me drive, walk, etc. but I'm not doing it? (Does that make sense? ) It's so strange.

I call it "Living in 3rd Person".

No fun when it's all day every day, like it was yrs ago.

I think cow's milk still somehow does that to me. Hard to say since it's also been yrs since I had any, but it was how I knew one of my pills changed formula in '05.

(Wish I'd just READ the replacement bottle more closely while AT the ND's office! )

Sorry about the death in the family Kassandra. I presume it's someone you didn't know very well?

[aprilh]

Another serious health threat from mold exposure is systemic fungal infection. Immunocompromised individuals exposed to high levels of mold, or individuals with chronic exposure paired with mycotoxin exposure may become infected. Sinuses and digestive tract infections are most common; lung and skin infections are also possible. Alcohol and mycotoxin production may result from the fungal growth, leading to myriad symptoms. Sudden food allergies and digestive problems can mislead diagnosis. Treatment can be long-term (many years). Systemic infection may be of the environmental mold itself, or by other common food-related molds consumed under a weakened immune system. A weakened immune system may also give rise to opportunistic infections, for example bacterial infection.

So this could be the cause of all my food intolerances in the last few years.

This is all making sense, the more i research. My oldest son was diagnosed with asthma 2 years ago. Then my 8 yr old was suspected of asthma about 2 months ago. My girls get croup alot lately. My husband has sore throats and sick alot. I of course have more health issues from the mold.

Andrea,

From what i have read, penicillium is the worst one of the 4. This is the one that lets off mycotxins.

paula

Paula,

Do you remember Moldlady on the Yeast thread? She knows a LOT about molds. If you can't find her here she is still active on Open Original Shared Link. You could post a question to her. Her long life of yeast problems was caused by mold exposure over a long period of time in the building that she worked.

Molds can definately cause yeast, asthma, lung problems, toxic buildup, intestinal issues (mainly from yeast I think), food sensitivities, ect. They can impair your immune system so that you are more exposed.

Another good site is Open Original Shared Link. The lady who started this board was subjected to mold which contributed to a lot of her health problems.

They will both say to get on a good human strain probiotic - like Natren brand.

Have you moved into the hotel yet? I can't believe you are having to go through this again! How frustrating!

April

[aprilh]

Kassandra,

Sorry about the death in your family

Carla,

Sorry about the death in your church choir

Sherry,

Can you post that recipe again for constipation? I can't find it anywhere!

Andrea,

What kind of chlorella was your child on? I hope I haven't asked you this before....sorry if I have. Is it chewable? What was he/she toxic in? Mercury? I would like to do something like that.

We are supposed to start the summer detox program. If I don't get my energy back - not sure how I will be able to keep up!

Rachel,

I can't believe you were paying $400 a month for just liability insurance!! That's outrageous!

[Rachel--24]

Rachel,

I can't believe you were paying $400 a month for just liability insurance!! That's outrageous!

No...I'm actually not that crazy!!

I might be lazy about some things but OMG....if I were paying $400 a month for liability I'd MAKE myself do something about it. I would not be driving or I'd be driving under some other insurance....maybe the one with the cute little green lizard.

I switched to liability when my insurance skyrocketed to $400....its much more affordable now.

[AndreaB]

Andrea,

What kind of chlorella was your child on? I hope I haven't asked you this before....sorry if I have. Is it chewable? What was he/she toxic in? Mercury? I would like to do something like that.

He and the rest of us are on King Chlorella with Russian Immune Support.

[Rachel--24]

I have my phone consult with Dr. Amy scheduled for June 9th. Its still a month away.

She wants to talk to me but not until after her conference...which isnt until later this month. I faxed over my recent labs and by the time I talk with her I'll also have the results of my porphyrin test.

I dont think she's going to be able to come back until July or August so in the meantime I think the phone consult will be a good thing.

[confusedks]

Yeah....I used to be like this ALL the time. I was just totally zoned out. When I was really bad off I couldnt process certain things...like when you're driving... red means STOP....green means go...basic stuff like that wasnt coming to me very quickly.

Yea...that happened today. I was looking at a car who was pulling out of a parking spot on Sunset Blvd, and they almost hit me, but I was just like "silly car." I didn't freak at all...and it was CLOSE! It's really scary to be like this.

Tom, I LOVE that...3rd person. That's so perfect! It's been all day almost every day for a week or so now. It's scary!

About the death, no I don't really know this man very well. He is my mom's uncle. He was very sick for a long time, living in a nursing home, and was living on TPN...hadn't eaten in over 3 years. So, he will be in a better place, but it's still shocking.

He went to the hospital yesterday, but that has happened many times before. But this time, was the last time.

I'm really not very upset about it, but there is a lot going on. My mind is going crazy with the IV stuff, insurance things, my mom's bday tomorrow, my new diet, etc.

[aprilh]

No...I'm actually not that crazy!!

I might be lazy about some things but OMG....if I were paying $400 a month for liability I'd MAKE myself do something about it. I would not be driving or I'd be driving under some other insurance....maybe the one with the cute little green lizard.

I switched to liability when my insurance skyrocketed to $400....its much more affordable now.

Oh! Ha ha! That makes more sense!

[confused]

April,

Thank you. I sent moldlady an pm. I hope she will check her emails in here. If i dont hear from hear from her in the next few days then I will try to email her on the other groups, or if u see her, will you let her know i need her expertise lol.

Right now im taking an break from detox and everything til i get my hair test back and until i get this mold out of my house.

paula

[tabasco32]

Has anyone here taken Flagyl? Or Diflucan?

I've only taken 2 doses, last night and this morning and WOW!!! LOL! I'm already herxing hard. I went to my uncles house for an hour and had to leave because I was getting so dizzy, headachey, etc.

Anyone get that feeling where you're not in your own body? Like, I'm watching me drive, walk, etc. but I'm not doing it? (Does that make sense? ) It's so strange.

I took Flagyl one night and the next day I felt like I slept too much. Body aches and stuff like that. I felt nauseous and couldn't even look at food and I worked in a Restaurant in South San Francisco.

I had chills and diarrhea. I stopped because it wasn't helping what I thought was a bladder infection. It helped my constipation though. Doesn't Flagyl have those bad sulfates in it? Isn't it a sulfur antibiotic? My grandma can't tolerate it either.

Yeah that out of body experience, happenes with trippy drugs. That happened to my mom on some kind of sinus medication, or and morphine, or ice cream?

Sorry about your loss Kassandra.

[Guest LittleMissAllergy]

I took Flagyl one night and the next day I felt like I slept too much. Body aches and stuff like that. I felt nauseous and couldn't even look at food and I worked in a Restaurant in South San Francisco.

I live right next to South San Francisco

And I had the same experience with the Flagyl. Body felt weak, nauseated etc.