Monday, November 8, 2010

Frustration and to be honest, a little fear...

I am getting really frustrated being stuck in bed the past 3 days.  It's bad enough when I am just stuck on the couch.  I don't get it because when I first started the IV rocephin, I was the best I had ever been.  I had a GREAT 2 months.  I had even started exercising again.  Then I crashed, hard.  Scary hard.  This was around the 12th of September when my lyme cycle hit.  When I started pulsing, I started to feel better again right away.  I even had a few good days in a row.  And my muscle weakness that had returned had disappeared again.  YAY!  I have done 3 pulses over the past 3 weeks.  I herxed on the 3rd day of the first pulse, then had those 3 good days.  Then on the second pulse, I herxed again on the 3rd day.  The day before the herx I had a good night & went to my nephews birthday party & felt pretty good (nights are always easier on me).  I also made it to my step son's baseball game (night).  But that's it.  Since then, I started my lyme cycle & just finished my third pulse.  I herxed again on the 3rd day HARD.  This was my biggest herx (other than the early treatment herxes) and I laid in bed miserable all day.  My husband was gone, I can't remember where he went.  But I laid in bed all day & went downstairs only when I was desperate enough for something to drink & eat.  I waited as long as I could hoping my husband would come home soon & either bring me something to drink or feed me.  Luckily there were leftovers downstairs that only took a minute to heat up in the kitchen.

Well, now I'm telling a story.  Oh well.  Anyway, I just want to be able to get out of the house and on days where I just have fatigue (I can get up & clean & cook dinner in spurts) I want that to go away.  The only time I have energy to do anything is at night when my family is ready for bed!

I am just wondering if I am ever going to get better.  If I stop the drugs, I'll just deteriorate again & get worse.  But my insurance is most likely going to cut me off soon.  I also need to get co-infections tested, but I have to pay for that out of pocket & we can't afford it.  I just know that if I don't treat the co-infections, the lyme can't go away.  The only testing I have had was through the standard labs & you cannot count on them.

I want to try something natural as well, but there are so many things out there and no studies to back what they claim to do.  I want to go see Dr. H up in the Bay Area, but he charges $650 per hour!  LLMD appointments are usually at least an hour.  I feel like the amount of money they charge is unreal.  Especially for people disabled by lyme.  Knowing that most of our care is paid out of pocket.  In the meantime, I will try to save some money to go see a chiropractor in Yorba Linda that does ART (muscle testing) to see which naturals & antibiotics my body needs.  She had lyme herself & treats a lot of Dr. H's patients down here.  I need to save up $275 cash in order to see her.  Oh bother.....  Lyme disease is a rich persons illness.  You only get better if you have money.

4 comments:

breathbybreath said...

Can the person you’re seeing for ART test you (using ART) for co-infections? I know I’m positive for Bartonella, Babesia, & Ehrilichia because of muscle testing; blood tests from specialty labs didn’t even come back positive. Thank goodness for muscle testing!

I really hope you start feeling better again, very soon!

Argonauta For a Day said...

Sonya-
I totally hear you. Lyme disease is the worst. Most LLMD's say that it gets a lot worse before it gets better, and they are right. I have been in remission for 6 mos, and everyday I count my blessings, and wonder if I will be in that trap again. Keep the faith. Be strong, even when you can't imagine it. You will make it through this. Let the toxins go out and know that every herx is a step closer to remission. There were day I really thought I was going to die. I wanted to die, just to be done with the pain. I know how you feel, but trust me that it will improve. You have come so far and soon you will be all better. Chin up.
Hugs from Washington,
Maryalice
Author, Mother and Survivor of Lyme

Unknown said...

Sonya, I am so sorry you are going through this. I hate that we are having so much trouble and I loathe this horrible disease. I hope that you feel better soon and get a break. I will be sending positive thoughts your way

Sonya Fights Lyme said...

I need to find someone local that can do ART inexpensively. That would be a good idea.