Omg...i Might Be On To Something

[CarlaB]

HEy everyone

SO I went for LED treatment yesterday. It was okay. Felt really tired and sleepy today and didn't want to get out of bed. HUH wonder why ? So unfortunatley I do have Lyme as well. GO FIGURE

I also have scurvy. Zero, I mean 0 vitamin C in my system. So got more supplements and such.

my next led isn't till January 7 which I feel is a long time between. I don't know.

Only Sh*t once today when I was suppose to go twice. But I didn't feel anything knocking at my back door so How could I. I ate apricots too and nothing. Lots of vitamin C and magnesia. Felt sick after all that.

Anyway talk to you all later

lisa

I'm glad you are getting treatment. Did you get tested for Lyme?

Carla,

I have dreams about being an OB/GYN who is Lyme literate!! I think that would be amazing!!! I agree that studying Western Medicine will be a great thing to do, and who knows I may decide to become a bone doctor....lol!

As far as the health stuff with my mom, it is really hard because I do think she has Lyme, but she chooses to ignore it also. Hmm.

Kassandra

Kassandra, the thing is, you may choose to be on ob/gyn, but if someone with Lyme showed up at your door wanting treatment, would you treat them? If so, then at some point that might overtake your practice! Unless things change by then and Lyme is more widely treated.

Hopefully your mom will notice her symptoms once you start getting better. I think many of my family members have it, too, after all, we all lived in the same place back when I got it.

[dlp252]

Hello everyone...I got so far behind, lol. It was really busy yesterday morning, then I had rehearsals yesterday evening, so no time on the computer at all.

Laura,

It is still amazing to me to see the difference in your health in just the time I've "known" you! Truly amazing and yes, miraculous!

Tantwan,

Hello and welcome.

Kristina,

Everyone is right...we've all been there or at least close to the point of giving up, but you just can't. It's hard, but keep looking! Many of us didn't think we'd find the answer, but we have and are.

Nyxie,

Hope this is the answer for you!

Kassandra,

Glad you got your IV in! The LLMD office probably has IV capabilities, so if you can't get more from the other doctor maybe the LLMD can order them?

And, you're exactly the kind of person who should go into western medicine because you've experienced the frustration as a patient that comes when doctors don't look beyond what they know.

Sarah,

I'm so happy to hear that your mother is doing much better!!! That's exciting!!!

Rachel,

I'm happy that you'll be seeing Dr. Amy too...wish I was, lol. I'm way too low on the waiting list to actually get to see her, but maybe someday!

Lisa,

Glad the LED treatment went well. I have to say that I am NOT shocked that you have Lyme too, lol. Was the testing for Lyme done by LED?

[confusedks]

Carla,

I am hoping Lyme will be viewed differently by the time I go through Med school...lol! One can hope!

Donna,

I think that the LLMD may be able to order these things, BUT I don't know if he'd know about dosing, etc. It is a tricky drug to deal with. And, if you do too much of it, etc. you can kill someone. There really is an art to it. We'll see though.

Everyone,

So we finally found a pharmacy that does IV meds, etc. and we are waiting to go get the stuff I need. It turns out the lady there is a nurse and she said that they usually give meds to be administered at home...so the iron I'm getting they would fill as a rx from my dr.

She also said that my mom should look into CCS (California Children's Services) so my mom called and they said that she makes too much money to qualify. But she then called the lady at the pharmacy back, and she said that it's not true, she knows people who have tons of money, but were able to prove that they were spending over a certain amount a month on medical bills, and they got "coverage."

CCS is apparently a program that would give us help with all these stupid medical bills in the sense that we may get discounts at dr's offices, etc. They would also allow us to get all of these IV supplies for FREE!!!! Let's hope that somehow they will choose to cover me. It's not insurance, it's just like a supplement to insurance.

Kassandra

[AndreaB]

CCS is apparently a program that would give us help with all these stupid medical bills in the sense that we may get discounts at dr's offices, etc. They would also allow us to get all of these IV supplies for FREE!!!! Let's hope that somehow they will choose to cover me. It's not insurance, it's just like a supplement to insurance.

Hope it works out for you Kassandra.

[Rachel--24]

Lisa,

Glad the LED treatment went well. I have to say that I am NOT shocked that you have Lyme too, lol. Was the testing for Lyme done by LED?

I'm answering for Lisa since she doesnt get alot of computer time.

She hasnt tested for Lyme (Igenex)....but it did show up in muscle testing. LED is acctually not a test....its a detoxification treatment....but prior to LED there is extensive testing (either kinesiology, ART, Asyra, etc). Lisa's Dr. (the same as mine) uses kinesiology.

I'm not surprised about the Lyme either.

[CarlaB]

I'm not surprised about the Lyme either.

Me either.

[tabasco32]

Hi everyone

How is everyone today?

I feel sick, sick,sick. Does anyone else suffer from pale skin and dark eyes or circles? This just started happening today. I look dead.

Oh Rachel Dee says hi and asked how you were doing. I told her you were doing good.

I know about the carpet cleaning incident.

So anyways I am going home now to eat. Is there anything we people with intestinal pain can take to make it go away?

Bye everyone

Lisa

[CarlaB]

Lisa, my pain finally went away a couple months ago when I started treating Bartonella. I never found anything that helped with it.

I'm feeling crummy today ... it's my week on Tindamax ... it still kicks my butt .... but a bad day now is better than a good day was a few months ago .... I spent the morning hanging around the house, but I did manage to get to Kohl's to do a little Christmas shopping and Starbucks for a latte. Now I'm exhausted and lying on my bed with my laptop ... the kids were watching tv in the family room, so it was just too much noise for me.

Pretty much, when I can take the Tindamax without flaring, I'll be done with meds and will move on to herbs. It's a cyst-buster, so goes after the more dormant form.

[mftnchn]

Hey everyone.

I am still mostly down with back strain but it seems better after two days back on abx.

Bad news is my liver enzymes are still elevated. I have emailed my doctor with the scanned results, I am afraid that I will have to drop the antifungal. So, no sugar and starch for me for Christmas!

Lisa, I am sorry you are still having pain and hope you can hang in there. Have you done Igenex? Sorry I have forgotten.

[mftnchn]

Anyone taking NAG and/or GLA? Did it impact your appetite?

[ShadowSwallow]

My sister was on GLA for a while (she might still be on it) and she didn't notice any difference in her appetite (of course she's 15 and sick now, and only saying "I don't know" so I can't vouch for the information's accuracy ). The only thing that made a noticeable impact on her appetite was going gluten-free, and if she ever goes casein-free (Entrolab says she needs to, but we've done nothing about it so far) I think most of her weight will drop off (she needs to lose about 50lbs).

[mftnchn]

Thanks, I should have said I have decreased appetite. Which is annoying but ok as I can still lose some weight.

[Tantwan]

Tantwan,

Hello and welcome.

Thanks so much for noticing me. It seems like you all keep really good track of each other.

I just wanted to give you a little bio about myself and my family. I feel like an "old" celiac looking at all of your bios. My mom was diagnosed with celiac in 1986 after 8 years of pain, diarrhea and tests. She weighed 78 lbs at 5'7" when she was finally diagnosed. My aunt was diagnosed in 1991 and I was diagnosed in 2002. So I've been around celiac for my whole life. We're a little different than most because celiac is brought on by pregnancy or illness for our family rather than being born with it.

I do really well with the diet and hope one day to start a gluten-free bakery/cafe. I love to see people's faces when they enjoy a chewy chocolate chip cookie for the first time in ages.

I started looking at this site because I've been having trouble with idiopathic anaphylaxis lately. I can't really find a page dedicated to that, but I saw it in a few bios. I just wondered if anyone had any ideas or experience. It's so frustrating.

I also have trouble with myofascial pain/headaches a lot which is getting better gratefully. I have such trouble concentrating, I feel like something must be wrong with me. I just can't focus on anything. It seems like you all know so much more than me about related illness/diseases, etc., I wanted to get some feedback. If any of you have any ideas for me, just let me know.

Tantwan

[AndreaB]

I also have trouble with myofascial pain/headaches a lot which is getting better gratefully. I have such trouble concentrating, I feel like something must be wrong with me. I just can't focus on anything. It seems like you all know so much more than me about related illness/diseases, etc., I wanted to get some feedback. If any of you have any ideas for me, just let me know.

I don't have answers but wanted to say "welcome" too.

I would think something else is going on. The challenging part is narrowing it down. Many here have lyme affecting them in various ways and a lot of us have some degree of problems with metals. Both of those can affect concentration but I'm sure there are other things that can as well.

[CarlaB]

Thanks so much for noticing me. It seems like you all keep really good track of each other.

We do. Welcome.

I think late onset celiac like you are describing is more common than you think.

[confusedks]

More insurance drama!! Besides the fact that they wouldn't pay for the iron IV's...they won't even pay for the saline and heparin flushes!!! OMG...this company is ridiculous!

I have no idea what we are going to do because we are leaving tomorrow and it will need to be flushed on Friday and we won't have anything to flush it with....ugh!!!

Tantwan,

I just wanted to say welcome!

Kassandra

[ShadowSwallow]

Oh my goodness, Kassandra. :angry:

If I were you I'd be contacting the local paper and asking if they want a story about a neglectful insurance company. Good thing you're not me.

Welcome, Tantwan.

[mftnchn]

Quick update, I have to stop Lamisil and Flagyl for at least a month.

[mftnchn]

Welcome Tantwan. I wonder about B12?

[confusedks]

Sherry,

Do you have to stop because of the liver enzymes? Also, did your LLMD order the h. pylori blood test?

Kassandra

[mftnchn]

Yes and yes. H pylori testing was done by my LLMD and I have to stop the meds due to elevated liver enzymes.

[AndreaB]

More insurance drama!! Besides the fact that they wouldn't pay for the iron IV's...they won't even pay for the saline and heparin flushes!!! OMG...this company is ridiculous!

I'm beginning to wonder about this insurance company. I hope your mom is going to make lots of waves. This is ridiculous!

Quick update, I have to stop Lamisil and Flagyl for at least a month.

You answered my question which Kassandra had already asked.

I hope your enzymes level out.

[mftnchn]

me too. Guess 7 years of meds has finally taken its toll.

[confusedks]

Sherry,

WOW!! 7 years...that's pretty scary!

Andrea,

After today, my mom is really conviced we need an attorney...and they are being ivestigated. Also, my uncle who knows a lot of people in the flim industry, etc. said we should call someone he knows who works for the LA times, I think. We will definitely make BIG waves!!!

I understand if they don't cover certain things, but the fact that we are told one thing and then another and another, that is a law suit waiting to happen!!! UGH!!

I called on Sunday to ask about the IV supplies and the lady said they would cost about $3 for saline (one month supply) and $5 for a week of heparin, if we got it at a local pharmacy. Well, now the IV pharmacy is saying that they won't cover anything! This is such BS!!!!!

The good thing is that we do qualify for CCS because their criteria is pretty easy...so hopefully that will start to happen and we can get some help with them.

Kassandra

[NoGluGirl]

Dear Kassandra,

It is wonderful your uncles share the wealth! I understand why you would not want to refuse their gifts. People can take offense to that. Grandmom grew up extremely poor. She understands what it was like to have little.

My grandmother always spoiled us. Since there were only four grandchildren, that made it easier. We have a special bond. I am the only girl of the four. She is the kind of grandmother who would make you a baked potato at 1am just because that is what you wanted.

This is pure insanity with the IV supplies! I hope you can get assistance for this. It is so irritating how they never keep in mind just because you have a larger income, most of it goes to medical bills! I am just so glad you finally got to start your IVs! You really need that iron!

The arguments with my mother always are an issue. Things will be going just fine, and then she decides to go nuts again! An excellent and reasonable offer on your part would be to tell her you need to at least get the IgeniX results, and if she is not happy with the LLMD, then you do not have to go back. However, considering the fact you had the rash, there is no way Lyme is not behind your health problems! WTH is your mother smoking?!

She is so much like my mother, it is unreal! Mom also has had bad health for years, but refuses to do anything to fix it. All she does is lay around like a beached whale, because she is on so many pills. My mother refuses to go gluten-free or dairy-free, and then has the nerve to complain about feeling bad. At least I am making an effort to get well!

Your Hanukkah gifts sound wonderful! Those eye masks are great to help with sleep. I wish I had a laptop I could take with me to my room upstairs. I have one of those prop-up pillows you got, and they are good to have! You never know when you will need it!

That fudge ball recipe sounds great! I would not mind trying those. I need to get almond butter. Since it is so expensive, I probably will not be able to make it often. This seems quite healthy. Speaking of, did you ever find out if the dates were causing you trouble?

Western medicine is quite useless on many fronts. You know how you said that they cannot help you unless you are dying? The sad truth is, even then, we are not often saved. Lyme disease is one particularly deadly illness that is often neglected. Celiac is another, and most of us were literally dying before our diagnosis.

I have thought about becoming a doctor as well, but modern medicine has been such a jagged little pill to swallow. It cuts your throat as it goes down. With all of the medical research I have done, I might as well become a doctor. I do not handle vomit at all, though. Blood I am fine with, but some of the other stuff grosses me out too easily. However, prosecuting bad doctors I can stomach!

Being busy is not that glamorous. I wish I could say I have been doing fun things, but mostly it is cleaning and organizing. One of the things I did this past week was get as much of the mold off of the shower as possible. Cleaning out the fridge is not exactly fun, either. The piece of mind is priceless, though. Knowing where things are is very nice.

Dear April,

I get neck pain all the time. I am not sure what the deal is. Antibiotics definitely helped it after a few days, but as soon as I went off of them, there it was again. This tooth has something to do with it. Since I get it out today, that might relieve some of it. Going back on antibiotics does not thrill me, but may be necessary.

Dear Ami,

Chlorella may be causing the discomfort. As Rachel pointed out, there are a few possibilities here. Easing up on it may help. Stirring up a lot of toxins and metals can really make your body ache. The Humaworm may be adding to it with the parasites being forced out.

Are you feeling alright after your D&C procedure? I hope you are not in any pain. I know this has been so rough physically and mentally on you! Perhaps in the coming months everything will improve. Everything has to come in time, whether we like it or not. We might both get a miracle in 2008!

Dear Nyxie63,

Thank goodness you are finally getting some answers! It is about time! I wonder if I have low enzymes as well. When I had my gallbladder out, fat no longer could be tolerated. The operation was more than four years ago, yet fat still makes me terribly sick! I think I may need to do some research on that.

That is great you do not have to get your gallbladder out. My grandmother had hers out due to a polyp years ago. Back then they removed it as a precaution, because they did not know if it was benign or not. They preferred to be safe instead of sorry. Is it just me, or did doctors have more common sense back then?

If you have information on natural hair dyes, I would love some! Going natural is best when possible. Your hair is blue? How cool! It is interesting you mentioned you are changing it to purple, because my favorite anime character has purple hair!

I love your idea of a Goth Christmas tree! I know something you would really like at the Pyramid Collection