Jo Jo - Fibromyalgia Message Board

Meme · 01-28-2007, 11:39 PM

You around? I haven't been around for awhile..I have been sooo sick and have been basically bed ridden...it has NOT been fun.

I wanted to see how things were going for you?

Have you seen the dr lately or had a phone call? Just wondering if you are up on the new Vitamin D stuff they are doing?

I am still taking the Valtrex and Ursodiol. I was on the INH and was taking 1/2 tab and had to cut that dose in half. Just literally throws me in this weird state. Literally cant' get out of bed,everthing hurts etc. it's very strange. I guess that is my way of the endotoxins taking over.
Anyway so Michael wanted me to stop the INH right now so I could get some relief and at least be able to function to some degree.

Also my sleeping has not gotten better. I have tried everything in the book. So we decided to give it a try and to a test and see if a dopamine would help me. I started taking Mirapex with Vitamin C 1000mg at bed and I couldn't believe it but I have been sleeping. It's been a godsend so far. I can tell each day gets a little better so I am thankful for that.
But what I couldn't believe is how much better my pain was when I started sleeping....literally the first night. It was truly amazing. I don't think I have had a good night sleep in 8 years at least.

So that is what's going on with me. I just wish I could tolerate the antibiotics and get going with the CPN treatment..I think it just goes to show you how bad I have it.

Oh ya...good news tho. I just found out that my hearing for SSD is March 1st. I can't wait. I really have faith that I am going to get it. I have a really good case and things just have to be looking up some.

In 2 days it's been 1 year since my dad died. I can't believe it's already been a year. I miss him dearly. He was an incredible man.
Ok just wanted to say hi
Meghan

jojo · 01-29-2007, 07:35 AM

HI Meghan!!

I am so happy to read you

I have wondered where you were. And my heart goes out to you for going through all of this...

What is the INH? I am confused on which med this is....So is this a Herx that you are going through (killing off the bacteria) ?

I really am happy that you have found something to help you sleep. It is SO important to us. and it helps us to heal as you know.

I am curious have you been tested for Lyme? I had/have lyme and all of these other wonderful things

And it took me along time to get someone to go on my symptoms and not what the dang test said. I do know that the Lyme bacteria...Chlamydia Pneumoiae bacteria are alot alike..and hard to tell one from the other....(symptom wise)...

Have you done this protocol for 2 years straight? Or have you just been having to cut back and start back up when you feel better? Did doc say why he feels you are having such a hard time with it. but then guess all of us are different, right....

I have a phone appt. on the 6th of feb. REally nothing to say but i cancelled my last appt. for this reason...
I had a problem around the holidays with the insurance I was on through Medicare, they had decided NOT to pay for Valtrex...and then I found another insurance company and by the time I got all of it straightned out I was flipping sick again...
But think I have that back under control again...yeah! Nice to beable to breathe....
I was going through some old test yesterday and all of those years that my results were sky high for Epstein Barr and Cytomeglovirus...oh my gosh and I was never on Valtrex for them. Infact I was never on Valtrex until I started seeing Doc Powell. Makes me wonder how many people I had gotten sick being around...good grief!

Hey you take care of yourself..And poke your head in here once in a while. I posted to you while back. No answer. Wish I could do something to help you. Make those kids help you around the house

Your in my thoughts and Prayer's...just remember you are with one of the BEST doctors around for this...that right there is a comfort.

Hugs to you!!!

Meme · 01-29-2007, 09:00 AM

I was on the protocol for a year straight..then when I went to Florida last year in Jan to care for my dad I just couldn't do both. It was more important to help my dad!
He's been gone 1 year ago tomorrow..I am so sad. I was cleaning my craft room...well trying to get it organized and I ran across some pics of him and all his sypmathy cards and just cried.

Well that is why I asked Michael if something else could be going on? Lyme, Lupus, MS etc...he was like yes yes yes.....so we are just fishing...right now

I asked him about Lyme....basically he said that the tests are so iffy and can always give you a false positive etc..that they are not concrete...and he's always said in the beginning that if it is Lyme also we are treating it.
I think when I go back in we are switching the zithromax with the doxy and try that cause I have never been on doxy.
I grew up in Virginia, where my back yard was woods and then MD where our house was in the woods....it was so gorgeous there...but almost every night we had tick night where mom had to go thru our heads...she found many and many that were imbedded...I wouldn't be surprised if I did have lyme.

INH is Isoniazid...its just another lovely antibiotic that is used usually for TB

Kids help, that's pathetic...husband understand, that's pathetic...all I hear from him is how he's sick of living like this and how he's not happy etc...I keep telling him where the door is...I don't need that. We have been married 16 years...and he's so selfish when it comes to me being sick and all....it's sooo frustrating....it hurts when he says hurtful things and causes **** with me.
anyway
just got the kids off to school I am off to lay down cause I ended up going to bed way to late lastnight and I might go back and nappy nap!!!
take care
Meghan

jojo · 01-30-2007, 07:43 AM

Hi Meghan!

I just want you to know that I understand about missing your Dad. It sounds as though you did everything that YOU could to make your Dad feel comfortable. Think I told you my Daddy pasted away 6 years ago this March. Can't believe it has been that long. We all got to be with him when he past over. And I held his hand. I understand as many I am sure could on the board. Wish I could take your pain away but just know that I am thinking of you.

I took the INH...thought I had but just wanted to make sure before I put my foot in my mouth. I was told to take half pill the first month. Well I want things done now and took them whole. "NOTHING" I mean NOTHING happened, no herx. so I took that protocol for a month. Then I had the problem of having my Valtrex filled then I got sick...so I started myself back up on the doxy.

Well you heard correctly about the lyme test not being accurate. But from what I have learned and read over on the lyme board. And going through my own experience....the test are not accurate. And give false negatives. Soooo many people mis-diagnoised saying they do not have lyme and actually they do. And are told they have fibro. m.s. ect...I knew when I had gotten bit I got sick the next day..within a week fevers, nightmares, nightsweats, pain, ect...and because my test didn't come out positive I was told I didn't have lyme. Anyway long story. But I wonder how many on this board actually have lyme. And are not being treated. Scary thought. I have read from the top Lyme doctors and see what others have gone through..that I tend to believe the test do give falst negatives...And yes I agree you are being treated with antibiotics. I just know that I was given much higher doses of antibiotics being treated with lyme. anyway...from what you said about your Mom picking Ticks off of you...Have you thought about seeing a Lyme Literate Doctor? Not all doctors are up on Lyme just as you have found out not ALL doctors are up on the CPN bacteria.

Actually it is kind of a catch 22 ....I know that I have the Chlamydia pnumoinae bacteria also...and the EBV and CMV so guess in the end it all works out. Right

Have you tried taking detox baths? I learned this one over on the lyme board then found the doctor on line and got full details of it. It is very good for you. It helps draw out the dead bacterias and toxins in your body. And using Hydrogen Peroxide helps to put oxygen back into your skin. Maybe today would be a nice day to try it. You use 4 Cups of Epsom Salts...and 64 ounces of Hydrogen Peroxide. And soak for atleast 20 minuets. I like putting eucalptus (mis-spell) and Lavender in mine. Read it is good for the lungs when we have the flare ups of EBV. (mono) I put as much of my body in the water as I can from my head to my toes.

I am sending you big hugs and prayer's today. Try and comfort yourself today. It is okay to go through what you need to today. Don't let anyone tell you differently. Talk to Dad...he is there for you too.

chat with you soon!

Meme · 01-31-2007, 09:18 AM

Thank you for the nice note. I actually had a pretty good day.
I actually went to mass after I dropped the kids off. That was very nice.
I just kind of hung around the house and rested.

I am slowly getting more energy with the improved sleep I am getting.

I have never tried the bath with the hydrogen peroxide. I do use Epsom Salts tho

I am off to my pain management appt. I had a cervical epidural a week ago so its a follow up.

Take care and keep in touch