Sunday, June 26, 2011

Day 2 Rocephin

Did my 2nd day (4 doses of IV Rocephin).  Felt crappy off & on but nothing major.  Then suddenly tonight I could barely stand.  My husband had to help me to the bathroom.  It was quite comical.  Usually when stuff like this happens, I get scared.  But it wasn't scary.  My husband then decided I'd better get upstairs & get my IV done.  So I crawled up the stairs.  Literally crawled up the stairs.  Barely made it to the top.  Then I just layed there.  I almost felt drunk.  My husband asked me if I took anything... Nope.  I felt kind of happy too.  It only lasted about 10 minutes, then I just felt like poo.  Head about to explode.  Wish I could drill a hole in my skull to let the pressure out.

Can't wait to start the Alinia!  Got it today.

Saturday, June 25, 2011

Re-Started Treatment Today

I started my IV Rocephin today.  I haven't been sleeping well, so I woke up at 6:30am and went back to sleep via 2 valiums.  Woke up at 1pm.  WOW!  I knew I needed sleep.  So I didn't get my IV in until around 2pm (a little late).  So finishing up my last dose now.  I should be receiving the Alinia in the mail tomorrow or Monday.  I will watch for it.  Just got my new dose of LDN 4.5mg.  Saved myself some money there.  YAY!  But it was hot when it got here.  I am sure it's ok if it's warm for a period of time.  It can be such a disadvantage to live in a HOT area.  The stuff that gets delivered is usually delivered hot.

I hope to start feeling well soo.  I really can't wait to start the Alinia.  I hope it starts to give me my life back.  I wish my doctor was in town so I could know what my plan is now that we figured out I am diagnosed with Anaplasma.

I'm rambling now.  I'm on Ambien.  So I'll try to fall asleep.  I feel like I need to eat something..

Wednesday, June 22, 2011


Since I stopped my antibiotics, I have gone downhill.  And downhill FAST!  I have had a major return of symptoms and it scares the crap out of me.   Air hunger, painful, stiff neck, feeling like death warmed over!  Headache so bad that I can feel my heart beating in my teeth.  I can physically feel it with my fingertip!  When I wake up my heart is racing (I haven't even sat up or rolled over yet)! I have dropped the 10 lbs that I gained back and am now back at 99lbs.  As I type this, my hands hurt, my muscles ache.  I am feeling better tonight THANK GOD, but have felt so bad I haven't been able to shower since Sunday (it's Wednesday now).   I have been in bed (or couch) since Sunday afternoon.  I had a decent morning Sunday and Saturday night was good, but I had been in bed (or couch) for several days before that.

I am sure the immense amount of stress me & my family have been under has had a lot to do with the relapse as stress weakens your immune system....

I am scrambling to get on the Alinia (anti-malarial drug) my doctor prescribed as a cyst buster.  I have a $500 deductible and a $60 co-pay.  So I need to come up with $560 for 30 pills.  But after that it will be $60 per month.  Please pray that this works for me!  My doctor will have me do it 2 weeks on (500mg twice daily) and 2 weeks off while doing IV rocephin.  I am hoping that even though my doctor is on vacation until mid-July, that his nurse practitioner will order up the bags of IV sodium chloride I need.  I have 25+ vials of rocephin and at 6 doses a week (2 grams twice daily) that will last me a month.

I got to see my dad on Father's Day.  I haven't seen him since weeks before his chemo & radiation treatment started.  He doesn't look so hot but he is hanging in there.  It was nice to see him and my mom.

Monday, June 20, 2011

Elizabeth Chalker & a Source of Low Dose Naltrexone (LDN)

Elizabeth Chalker got on a plane to see the LLMD she needed to see!!  That is the good news.  One of her friends updated and said she is hanging on by a thread, doing really poorly waiting to see the doctor.  I believe the appointment is tomorrow.  I have faith that she will make it to that appointment.  She's made it this far.

Low Dose Naltrexone

I found an inexpensive source of LDN (Low Dose Naltrexone).  I was paying about $37 for a 30 day supply.  Skip's Pharmacy in Florida "services" California too!
Fax: 561-218-8873
Emails:  General
Clinical Questions:skipthepharm@aol.comI am getting 4.5mg, 30 capsules for $19.95 plus $5.95 shipping.  So 26 bucks!  Not bad.  Every penny counts so I wanted to share them with you in hopes that it can save someone else some money.  Got my script faxed over to them, they called me, and they are getting it shipped out.  Hopefully it will go out today.  I will NEVER go without my LDN.  Last time I was without, I relapsed.  I don't know if that was the cause, but I won't be without it.  I've had to cut down my dose to make it last, but it'll all work out....

Wednesday, June 15, 2011

Help Elizabeth Chalker

This is Elizabeth in her happy, healthier days.
Elizabeth Chalker is suffering greatly and she needs everyone's help to raise money to hire a charter plane to get her to see the only doctor in the country that will help her.  She has extreme sensitivities (beyond comprehension) and cannot fly commercial or have stops in between.  She also need a pressurized cabin.  She needs to get from Boca Raton, FL to Salisbury, MD on June 19th.  You can find out more information in the links below.  This has become a life or death situation for someone that cannot help herself in any way.  

If you know ANYONE that may be able to help financially or with a plane, please forward this information to them.  All the charity flight organizations have already been contacted & because of Elizabeth's dire health condition, they cannot meet her needs.  So she needs a private plane.

Friday, June 10, 2011

Changing Course and Fighting For My Family

Still waiting on MDL Labs test results.  The C3a & C4a kit has STILL not arrived to LabCorp.  I also contacted Jewish National (they perform the best tests for this) and I am going to get a requisition signed by my doctor to have it sent there by LabCorp (like they used to do) instead of them doing their own testing.  Only issue I am finding now is that they have to add that preservative after blood draw & when speaking to Jewish National, they don't want that preservative in it.  I will just delay the test until I get it all worked out.

I never heard back from my Malibu doctor on the MRI for my brain.  Still don't know what caused the seizure.

My step son is going to be tested through MDL Labs for Lyme and co-infections because he has been having pain throughout his body (low back pain, now better, but now his neck is hurting, his right ankle & right knee & shoulder were hurting, with odd things going on (numbness in his hands, etc which has also gone away).  My step son is concerned.  He has also been under a lot of stress with the family drama and that may be exasperating his symptoms and may not be Lyme related, may be stress after all.  I hope not and I will continue to believe that he is a perfectly healthy kid with every day aches & pains from the sports he plays until I am told otherwise.

I have stopped most of my supplements and meds and I am only taking some new supplements that were sent to me by an Amish man in Pennsylvania.  He heard about me through a friend of a friend and SWEARS these supplements are what help when people in their community contract Lyme Disease.  They work in fields & close to animals & it is widespread through their community.  I started 24 hours ago & will be faithful in doing what he says I should do and will give it a go for 30 days.  I will keep my blog updated as I go...

On another note......

My family's life has basically been turned upside down and shaken by some individuals who do not have my step children's best interests at heart.  My poor children feel as though they are being ripped apart in a tug 'o war.  Adults that wish to flex their "power", influence and their financial means for their own selfish needs & desires on someone else's children.  I have not been able to concentrate or do anything but worry and stress for the well being of my husband and my step children.  My kids are victims in a game that should never be played with children no matter what their age.  My husband's heart is not well and the stress of this is causing him to become more ill.  I am VERY concerned about him.  We had to hire a high powered attorney (friend of a friend and is cutting us a MAJOR deal) and my husband has been without medical insurance because we had to make a choice.  Attorney?  Or Medical Insurance, food, medication, doctors, etc.  Obvious choice is to fight for our children.....  Please keep my family in your thoughts and prayers as we fight an uphill battle.