Omg...i Might Be On To Something

[CarlaB]

Happy Mother's Day!! I think we're going to take the family to go see Superman today.

I always find it amazing how we all have similar illnesses and similar ideas and we end up on such different paths to wellness.

With the herxing, I know for me anyway, it's a return to how I used to feel all the time, but in between herxes I feel better than I did before. I think there's a balance between killing off enough bacteria to get well, but causing some herxing, and not doing enough to get well. My doctor expects cycling/flare-ups/herxes, but he doesn't think it's the right protocol if something makes you feel bad most of the time. It's all about balance.

I find it interesting that most LLMD's seem to be into alternative treatments. Mine is even though he starts with antibiotics. He doesn't do one treatment for everyone ... my friend here who has Lyme and babs is on significantly fewer medications than I am, and different ones at that. There definately is not one treatment that fits all ... it's not like getting rid of strep throat where the same medication will work for everyone.

Truthfully, I don't think someone will get well on antibiotics without the alternative therapies as support.

Chloe and I have our appt. a week from tomorrow. We're flying into La Guardia, so I'd like to stop by the Risotteria for pizza on our way up there Sunday. Chloe was thrilled to order a hamburger in a restaurant, I can't imagine what she'll do when she can order a pizza!! We're flying in Sunday and out Monday evening.

Get this: Open Original Shared Link The AMA wants to make health insurance mandatory. Ummm, are the doctors and insurance companies in cahoots? Is this why chronic Lyme doesn't exist? (said sarcastically).

I used to put a lot of time and effort into youthwork with the church ... it was worthwhile to spend my time on that. I'm bored ... I need to add something back into my life now that I'm not always laying around all day ... what do you think could be done to help with Lyme Disease awareness, treatment, etc. Any ideas? What can we as non-medical people do? What (new or existing) organization could be helpful? What do you think is the biggest need? Think big.

[CarlaB]

Oh no, not here

Yeah, we'll have no more of that.

[Rachel--24]

Hey Donna.....I cant get to page 1036!!

This was happening to me a fewc times last weekend too.....but it didnt happen at my moms at all.

Stupid Dial-up.

I think on that page you asked about "The EX"??

Well I've got lots to say about the ex ( just ask Andrea )....I think you were probably talking about the movie though.

The movie was SHORT....it seemed like it was over pretty quickly. I think maybe it was less than 90 minutes.

It was just OK...it was pretty funny....not so much a "romantic" comedy....it was more comedy....and it had some really funny parts.

I didnt walk out gushing about the movie and about how I wanna buy it when it comes out on DVD....which I always do when I really like a movie.

I'm gonna go see Disturbia next.

Oh...we had two kids with us (pre-teen) and as we're driving to the theater my friend asks me how my day was. I was feeling really toxic Thursday and Friday so I wasnt feeling FABULOUS or anything even close....so I answer "It was alright...I kind of didnt feel too good today though....it wasnt the best day ever."

THEN....I hear this BIG sigh from the back seat and following the dramatic sigh..."OMG...not again!!"

and I'm like "Excuuuuuse me???"

Then the other boy says "Yeah....she NEVER feels good!!"

So I say..."Thats not true.....just wait till we get out of the car and I kick your butt....I'll be feeling pretty good after that!!"

Kids.

and yeah....I did "rough" him up a little after that.

[cheryl50]

Rachel - Thank you for the lovely post.

Happy Mother's Day to all. Enjoy your day.

Rachel - enjoy your yard today. I hope the weather is hot enough for you.

Carla - I really don't know how you do it!

Cheryl

[CarlaB]

Carla - I really don't know how you do it!

It's really not hard ... everyone contributes ... the hardest part is cooking for 8 every day.

[AndreaB]

Yeah, we'll have no more of that.

Agreed.

I think on that page you asked about "The EX"??

Well I've got lots to say about the ex ( just ask Andrea )....I think you were probably talking about the movie though.

[AndreaB]

Well, we must get ready to go shopping. Talitha wants to make french toast for dinner and we don't have a drop of syrup or eggs.

Been fun reading all the posts this morning.

and hugs to everyone!

[Rachel--24]

With the herxing, I know for me anyway, it's a return to how I used to feel all the time, but in between herxes I feel better than I did before.

Yeah...and for me I think if I dont lower the dose or stop all together I'll just feel bad all the time.

I've just got a really heavy load right now.

I find it interesting that most LLMD's seem to be into alternative treatments. Mine is even though he starts with antibiotics.

I'm sure there are still some who still primarily use antibiotics....but yeah ...you're right...I think most seem to be geared toward alternative stuff or least have incorporated it in as a big part of the healing process. Its good that each patient gets looked at as an individual though....and the treatment is based on that persons needs and that the Dr.'s can see that not everyone responds to the same treatments.

Truthfully, I don't think someone will get well on antibiotics without the alternative therapies as support.

I dont think so either....its pretty apparant when you read the posts on LymeNET. Alot of people seem to spin their wheels on antibiotics....it just seems to reach a point where things stall or begin to regress. They need other things to get them over the hump...like Sherry posted here about her own experience. Antibiotics can be very good to a point....but they definately dont seem to get the job done by themselves.

This is why I think its necessary to have an LLMD...a traditional Dr. (or a "duck" as they call them on LN ) isnt gonna be successful treating chronic Lyme....they just dont know all of what it takes to get the immune system strong enough to overcome it.

Chloe and I have our appt. a week from tomorrow. We're flying into La Guardia, so I'd like to stop by the Risotteria for pizza on our way up there Sunday. Chloe was thrilled to order a hamburger in a restaurant, I can't imagine what she'll do when she can order a pizza!! We're flying in Sunday and out Monday evening.

AWESOME!!! Cant wait to have pizza again...OMG....so yummmy.

I used to put a lot of time and effort into youthwork with the church ... it was worthwhile to spend my time on that. I'm bored ... I need to add something back into my life now that I'm not always laying around all day ... what do you think could be done to help with Lyme Disease awareness, treatment, etc. Any ideas? What can we as non-medical people do? What (new or existing) organization could be helpful? What do you think is the biggest need? Think big.

Hmmmm...I will have to think on this one.

That reminds me though....I got my Lyme bracelet from Scott the other day.

[CarlaB]

Hmmmm...I will have to think on this one.

That reminds me though....I got my Lyme bracelet from Scott the other day.

I got mine, too. Thank Scott for me ...

Yeah, I was thinking there has to be something that can be done to help the situation ... something way short of going to medical school!

I don't want to mention what I've been thinking because I don't want to stifle ideas others may have had ... I want to see what all of you think is the biggest problem that we can help with.

[Rachel--24]

Talitha wants to make french toast for dinner and we don't have a drop of syrup or eggs.

French toast for DINNER!!!!

Is there anything better than this???

I am so envious of all the french toast eaters.

My mouth waters when people come through my line buying that super thick french toast bread....YUMMM!!

I want me some french toast.

I told my mom next year I'll be able to take her out to brunch.

My brother is taking her out to dinner tonight...I gave her her mothers day gifts yesterday.

[AndreaB]

Chloe and I have our appt. a week from tomorrow. We're flying into La Guardia, so I'd like to stop by the Risotteria for pizza on our way up there Sunday. Chloe was thrilled to order a hamburger in a restaurant, I can't imagine what she'll do when she can order a pizza!! We're flying in Sunday and out Monday evening.

That should be so much fun for her.

[AndreaB]

Duplicate post.

[Rachel--24]

Ok...I got my new pics up.

The one in my personal pic is the "before".....I had only had the lawn, patio and "mowstrips" put in and was working on getting ready for plants and trees. I had the them leave me extra space on that one corner of the yard because I wanted a big tree.

After the yard was completed that one corner remained empty for a long time cuz I never got around to getting the tree.

One day when I was on disability I saw those plastic ponds you could just put into the ground...I got three pieces so I could make a cascading waterfall. I had to buy tons of soil in order to make the ground really high for the waterfall.

It actually worked the way I planned it in my mind and in just a couple days I completed the project. I dont know how well you can see it in my avatar. I even had 4 fish in there....my koi got too big and jumped out...I found him on the lawn.

There were lots of fish by then...they had babies and everything.

One day the power went out and the pond stopped circulating and I lost all my fish.

I dont have any fish at all right now but maybe this summer I'll get some.

[Clark Bent as Stupor-Man]

Yes, it's fine. I take Nystatin with my antibiotics.

I'm taking Ultra Flora, Theralac, and VSL#3. They all come up on a Google ... I order the first two from my doctor and the third online. I'm on an extra amount because of my GI issues.

is Ultra Flora the Metagenics one? sounds familiar... and Theralac is different than Threelac, right? I remember you talking about the VSL one a couple months ago... it's a pretty strong probiotic if I remember right... I'm probably gonna just take 2 different Klaire probiotics daily to start with as I seem to react fine to them and I'm not sure I want to test out mixing in unknown supplements as I start the antibiotics..

I was hesitant to get on heavy duty antibiotics long term, too. I understand your hesitation. I was so sick that I've not felt worse on the meds than I did before treatment, but I do feel as bad as I did before treatment during a herx. I don't know if that makes sense, my brain left when I started this herx that I'm finally coming out of .... slowly.

makes sense to me... I guess I'll find out soon enough if it holds true for me too...

You're correct that I'm not on antibitoics. I'm taking Cats Claw/Samento for Lyme and Noni for Babesia. I take Nyststain for yeast and as far as I know its not a problem while on antibiotics.

Nystatin is very safe...however Diflucin is hard on the liver so I'm thinking Nystatin would be a better choice...especially since antibiotics are also hard on the liver.

I knew you were taking cat's claw and I think I remember you mentioning the noni as well.. don't know much about samento

as for Nystatin, I've been hesitant to take antifungals that aren't very mild after my previous experiences... I took SF722 last summer for 6 weeks and it did a number on me... I took only one tablet per day (maybe 300 or 500 mg) of caprylic acid early this year and I could handle it but still felt a rxn for a couple hours afterwards... I didn't feel comfortable bumping up the caprylic acid, especially after the SF722...

I never reach that plateau of die-off rxns after a week like you're supposed to... it seems to me that if I took an antifungal every day for a year, I'd still be reacting every time... this might change when I start lyme treatment (or maybe I have to look into some other factors as well)... on top of that, my mom who went on a candida diet for years when I was younger also couldn't tolerate regular strength antifungals like Nystatin... I think she took a very reduced dosage of it for a little bit and just did the diet aside from that..

I'm actually a little surprised you react fine with Nystatin... you have problems with most probiotics, right? I guess if you can tolerate the Nystatin, maybe I can give it a try or I could just be one up on you with reactions to antifungals

[miamia]

Happy mothers day to everyone!!!! especially you andrea my on line mother!!!

no rachel- no furry friends for me but I have a plant that I have had for 7 years- and to me that is impressive. Oh if you want to count alll the mean little beasties recking havoc on my system I am the mother to many!!!

Rachel-

I total agree with everything you said about detoxing- its not enough just to kill the candida or parasites you need to find a way to actually get that die off out!! thats why they usuually recomend cleanses and such if you are going on an antifungal.

[dlp252]

HAPPY MOTHER'S DAY TO ALL!

I am not a mom at the present time, lol. The only living things I care for at the moment are the mold and dust mite spores, lol. I'm doing well at keeping them healthy. Once I regain my health I will get another dog or maybe two!

I can't get to page 1039 or 1042 either...seems to be every three pages or so. Once I post this message it will take me to the last page, which I hope is still 1042, lol. Really stupid dial-up!

Oh no, not here

Agreed from me as well...not here on this thread!

We could be the Sisterhood of the Traveling Toxicities. But we have Charlie too so I'm going to have to think on that one!

...

Donna- I will write you a eulogy for chocolate.

Yeah, the Siblinghood of the Traveling Toxicities just doesn't have the same zing to it!

Thanks for teh eulogy! I AM eating the remaining truffled walnuts though...I may get sick, but I'm finishing them.

HAPPY MOTHER'S DAY TO EVERYONE!!! (IT'S ME ROBBIN!)

Hi Robbin! Glad you stopped by...come back more often!

I think on that page you asked about "The EX"??

Well I've got lots to say about the ex ( just ask Andrea )....I think you were probably talking about the movie though.

Yep, the movie ex...I've heard just a little about the real ex, lol. Good, your "review" will keep me from buying it.

and yeah....I did "rough" him up a little after that.

Good, that always makes me feel better.

Happy Mother's Day to all. Enjoy your day.

Happy Mother's day Cheryl!

I dont think so either....its pretty apparant when you read the posts on LymeNET. Alot of people seem to spin their wheels on antibiotics....it just seems to reach a point where things stall or begin to regress. They need other things to get them over the hump...like Sherry posted here about her own experience. Antibiotics can be very good to a point....but they definately dont seem to get the job done by themselves.

That reminds me though....I got my Lyme bracelet from Scott the other day.

Yeah, it's pretty depressing to read over there sometimes...but then I remember that most just accept their fate and aren't open to trying other things. Hum, I hope he still has bracelets left if and when I find out I have lyme, lol. Course, then I'll have to change my purple toes to lyme green.

French toast for DINNER!!!!

Is there anything better than this???

I don't think so. I LOVE french toast. I actually like it just fine with millet bread...I'm hoping some day I can eat millet bread again, lol.

[dlp252]

no rachel- no furry friends for me but I have a plant that I have had for 7 years- and to me that is impressive. Oh if you want to count alll the mean little beasties recking havoc on my system I am the mother to many!!!

Yeah, the mean beaties keep me plenty busy...and I forgot about my dad's plant that is still alive...

[Clark Bent as Stupor-Man]

I'm willing if Charlie will repost his. I think he was at the bottom end of range.

Charlie?

yeah, my CD57 result was the exact bottom of the reference range... my number was 60... I think the reference range is 60-300...

and the information rachel posted about typical #s, the analogy comparing lyme and CD57 to the suppression of certain cells from HIV infections, the gaging of a person's progress against lyme infection and chances of relapsing based on these numbers is all pretty much word for word what my LLMD told me..

[Clark Bent as Stupor-Man]

Dear Charlie,

As far as I know, it is a smart move to take antifungals like Nystatin with antibiotics. This helps prevent the possibility of Candida. Like Rachel and Carla said, Lyme tends to be part of a nasty trifecta that also includes Candida and Mercury poisoning. Probiotics are a great thing to add for a lot of reasons. Killing yeast is one helpful thing they do. I heard somewhere that 1 Billion microorganisms is what to shoot for.

I've been taking probiotics for a while, off and on the past 15 months and daily this year... I've also taken antifungals, but as I stated earlier, I typically don't react well to them..

Yeah....my mom works with a woman who takes FMLA....for migraines. My mom says she gets paid though...from all that I've read I thought that FMLA is unpaid leave??

My Dr. was going to put me on FMLA....and I was not diagnosed with anything. I didnt have a diagnosis for the two years I was on disability either...my diagnosis was simply called "illness".

FMLA is unpaid leave... maybe her job has some additional provisions... FMLA simply provides a person with protection against punishment or losing one's job for having to take time off due to illness (or a family matter)... FMLA, for example, can be used when a person takes a few months off to care for a child or in my case, when I was taking some hours off on random days each week due to a chronic, or persistent illness.. but yeah, all the hours I missed (when I was full-time) were unpaid... when I lost my FMLA, I set up part-time with my job and have been working 30 hours a week since then

Rachel- That was beautiful. We could be the Sisterhood of the Traveling Toxicities But we have Charlie too so I'm going to have to think on that one!

don't let me get in the way of your plans... I'm fine with chilling on the couch watching football with an ice-cold Poland Spring while you ladies do your sisterhood activities...

Chloe and I have our appt. a week from tomorrow. We're flying into La Guardia, so I'd like to stop by the Risotteria for pizza on our way up there Sunday. Chloe was thrilled to order a hamburger in a restaurant, I can't imagine what she'll do when she can order a pizza!! We're flying in Sunday and out Monday evening.

you know, this is probably the most exciting part of my lyme diagnosis... I'm pretty sure I'll be able to eat dairy, at least in moderation, at some point down the road... hopefully sooner than later... I'm probably going up to the city in the next month or 2 and I'm definitely going to the risotteria when I go up.. not sure if I'll give dairy a try then but I wouldn't be surprised if I did...

[AndreaB]

Ok...I got my new pics up.

The one in my personal pic is the "before".....I had only had the lawn, patio and "mowstrips" put in and was working on getting ready for plants and trees. I had the them leave me extra space on that one corner of the yard because I wanted a big tree.

The new picture looks much better than just grass......as much as I like a nice lawn.

You'll have to email me some more pics so I can see the fountain. I love fountains!

Happy mothers day to everyone!!!! especially you andrea my on line mother!!!

Thanks Miamia. I always like to know how you are doing.

Hum, I hope he still has bracelets left if and when I find out I have lyme, lol. Course, then I'll have to change my purple toes to lyme green.

yeah, my CD57 result was the exact bottom of the reference range... my number was 60... I think the reference range is 60-300...

and the information rachel posted about typical #s, the analogy comparing lyme and CD57 to the suppression of certain cells from HIV infections, the gaging of a person's progress against lyme infection and chances of relapsing based on these numbers is all pretty much word for word what my LLMD told me..

Got it. Now we'll wait for Donna, Bev and Rachel's results this week. I know Donna gets hers on Tuesday and Bev on Wednesday.

Rachel, are you supposed to call mid week or so?

[CarlaB]

Charlie, I wouldn't be surprised if most of our food intolerances come from the Lyme. I think the things we're intolerant to are probably things we should avoid in general, but an occasional splurge might sit just fine. I just know that when I get this Lyme under control that I don't want to do anything to aggravate it again! I'll need to do everything I can to keep the upper hand.

When you start your meds, including if you start Nystatin, you're going to want to start one at a time and wait a few days before you start the next. That way you can tell which one you react to if you have a problem. I started the Nystatin right away so that I wouldn't develop a candida problem from the antibiotics. I had been doing the candida diet and taking anti-candida supplements when I was diagnosed with Lyme ... by the time of diagnosis, it was under control so I didn't have to be as strict.

Donna, my toes are purple, but I do my fingernails in green once in a while, but not often.

Rachel, pretty yard. At our old house we had an acre pond. When we stocked it the fish guy asked if he could dump the rest of his load in there including a few koi. He did. Every once in awhile you would see them swimming under the dock. They were pretty, and they did get big.

We also had an attack bass in that pond ... one day I had my feet dangling in the water when the kids were swimming and this HUGE bass bit my foot! The kids wouldn't swim after that. The next day we went out and the bass bit off the end of a blue swim noodle! That 24 inch bass now hangs on our wall! Chloe caught it.

[Rachel--24]

You'll have to email me some more pics so I can see the fountain. I love fountains!

I dont have a fountain in the pond....its a cascading waterfall. The water comes out from the top (cant see in pic) and spills over rocks into the pond. It keeps the water circulating.

Rachel, are you supposed to call mid week or so?

I'll probably call tomorrow or Tuesday to see if the results are in.

Rachel, pretty yard. At our old house we had an acre pond. When we stocked it the fish guy asked if he could dump the rest of his load in there including a few koi. He did. Every once in awhile you would see them swimming under the dock. They were pretty, and they did get big.

Thanks Carla.

Yeah....the koi get hecka big!! I didnt know it until mine started looking like a trout in my small pond!

My other 3 fish were goldfish....they got big too but nothing like the "trout".

There was maybe at least 8 babies that I saw....if they had all been able to grow up there would have been no room for all the fish!!

We also had an attack bass in that pond ... one day I had my feet dangling in the water when the kids were swimming and this HUGE bass bit my foot! The kids wouldn't swim after that. The next day we went out and the bass bit off the end of a blue swim noodle! That 24 inch bass now hangs on our wall! Chloe caught it.

Wow! Thats crazy!

I would be terrified of the pond just after seeing that he bit off the end of the swim noodle!!

[NoGluGirl]

HAPPY MOTHER'S DAY TO RACHEL, CARLA, ROBBIN, PATTI, MIA, LAURA, JUDY, CHERYL, ANDREA, BEV, AND DONNA AND EVERYONE ELSE!

Dear Rachel,

Thanks for the shout out! Poor Dart had a seizure today. He was doing so much better. It may take a bit for them to completely go away. For the most part, the Potassium Bromide, Lactulose, and Amoxil have helped greatly.

I love your landscaping! It is beautiful! You have a turtle! I love turtles! My best friend's dad had a pond with fish and a turtle and snails. The turtle ran away! Unfortunately, my best friend accidentally sat on the snails when she sat at the side of the bond. I think she might still have the shorts with the brown spot from where it was crushed. It made this noise...it is hard to describe.

Dear Bev,

The Sisterhood of the Traveling Toxicities! ROTFLMAO! That is a good one! I love that. Incidentally, it was my idea to paint Charlie's toes green. However, he probably would not like it much.

Dear Carla,

How you feel with your herxes is about how I feel off and on all of the time! It comes in spurts, too. I may have two or three days or up to a week of feeling really bad. Then, I will recover and do better for a while. The nausea and stuff always is worse around when my original menstrual cycle was.

An attack bass? That is frightening! Chloe caught the mean old thing, huh? I bet you are proud! Keep us updated on your upcoming trip. I am sure Chloe will enjoy her pizza and hamburger!

Dear Andrea,

Thank you for the compliments on my pic. I did not think I looked good at all. I have no make-up on. I hope to get a better pic done soon. That was not my best photo, but it was more current.

Dear Charlie,

As far as I know, you are supposed to do the Candida diet for at least a month prior to taking Nystatin or any other antifungal. This minimizes your chances of a herx. I do feel that herbs are a better option for certain people, though. I prefer to go all herbal if possible. I do not tolerate drugs well at all. Many antibiotics are a problem for me.

Dear Robbin,

Welcome to the board! It is so nice to finally meet you! There is so much we discuss, it can be difficult to keep up. I think we will do alright though. One thing is for sure, it helps if you speed read!

Sincerely,

NoGluGirl aka Jin

[CarlaB]

I would be terrified of the pond just after seeing that he bit off the end of the swim noodle!!

Yeah, until they caught the attack bass no one would swim!

The summer before last we ran out of propane ... it's hard to remember to buy when 1. I'm a city girl and 2. I'm not using the heat. The well water was COLD. Adam was out of town for several days, and I didn't want to deal with figuring out how to light all the pilots, so the kids and I would bathe in the pond every night.

It was crystal clear water, very pretty. We'd jump in, then get out and soap up, then jump in and rinse. Talk about hillbillies! It was a fun, memorable experience.

Unfortunately, all the kids got many ticks when we lived there. I never did ... I avoided the woods because of the poison oak. I had one crawling on me, but it didn't bite.

[CarlaB]

How you feel with your herxes is about how I feel off and on all of the time! It comes in spurts, too. I may have two or three days or up to a week of feeling really bad. Then, I will recover and do better for a while.

This is how I was before treatment ... I still fluctuate with good days and bad, but I have a clearly defined herx.

I ran out of iron a few days ago ... stupid me ... today I can hardly sit upright ... Adam hates it when I forget to buy iron ... this has been an ongoing problem for most of our marriage, I forget to buy iron and get weak ... stupid babs.