Tuesday, July 7, 2015

Beginning Month 6 - Things Were Going So Well...

Things were going so well.

 Month 5 really didn't seem to bring much progress until the very last week. In the last week of the month, I seemed to have a little more energy and was able to get a big chore out of the way in the garden. I didn't do the chore, I just helped.
We also were able to get the basement painted.

I had planned to up my A-biotic for 5 days during the full moon, which was going to be on July 2nd. I seem to feel worse around the full moon, which the lyme community says is when borrelia come out to play - they come out of their biofilm and multiply. I've read this is a good time to hit them.

On Sunday the 28th of June the hubs and I went to church and the loud worship didn't seem to bother me as much. I've had to wear earplugs at church even during the sermon and did so that day.
Came home and had a snack, then went out to tell my husband where the bags of mulch needed to go after we/he had done the hard work of removing some raised beds. 

The scene of the crime

I had planned on having him lay the bags out in the area, but it wasn't very hot out and he started opening bags, so I started raking it smooth with a 6" wide rake. I don't think it had been 5 minutes as I hadn't even broken a sweat, when I bent slightly over and pulled back easily on the rake and felt an excruciating pain. The pain was so great in my lower back/hip area and I called out to my husband who was just walking up the hill to get more bags of mulch. 

I couldn't move and was crying by the time he got to me and he couldn't understand me because I was hyperventilating, so he picked me up and carried me into the house(basement). I think he actually ran carrying me!
He later said it was a good thing I have lost 27 pounds because he's not getting any younger.

The pain was excruciating. The muscle that goes from the spine to the hip (possibly the iliacus/iliapsoas) would spasm and completely cramp up, I would hyperventilate and would scream in pain. Yup. It was worse than labor.

After a few hours of resting, it wasn't getting better and I had to get upstairs. 
It. Was. Painful... one step at a time. All 16 stairs.

The next day I took a Valium, which I had leftover from my vein surgery to take the edge off of the pain(didn't help) and  my husband took me to urgent care. They gave me some hydrocodone and a muscle relaxer. They couldn't give me anything stronger as I either had to go to the ER or my own doctor.

The drugs worked for about 24 hours, but the pain was getting worse, so we went to a smaller ER nearby. I found a single Oxycodone left over from physical therapy for my frozen shoulder awhile back (I hate taking drugs) and it helped ease the pain enough for me to get into the car and get to the ER.  This ER didn't have an MRI which would have been safer, but this ER only had a CT scan. I was given Dilaudid  so I could be moved to  get the scan and it showed that I didn't have a bulging or slipped disc. CT scans don't show muscle, which is why an MRI would have been better, plus an MRI is safer because it exposes you to a lot less radiation.  Note to self...always call ahead to see if they have an MRI on the premises because CT scans mean exposure to a lot of radiation.

The whole week was a big blur and I can't remember what happened on what day, but a warning here; if you have lyme and your bowels have low motility because of muscles being weak and atrophied, start taking stimulant laxatives immediately when you start taking opioids.
All I'm going to say is that I had another day of hell from not knowing this.

I was able to get to the bathroom with the help of my husband when he was home and my daughter who slept next to me (my husband snores) for several nights. 
I am so grateful to them for taking care of me, especially my husband. I'm also grateful my neighbor across the street who was an ER nurse was available for questions. 

After the day from hell, I started weaning off the pain meds.  Thankfully, as each day passed, the pain was a little less and could get around with my mother in law's cane we had brought home with us after her memorial a couple of months ago. 

As for weaning off the pain meds, I cut the oxy dose in half and took both drugs farther apart.

Today, I stopped taking all pain meds completely as the oxy was giving me chest pains, which is a little disconcerting. 
There's still some pain and stiffness in the area, but I've been taking care of that with epsom salts baths, using my Migun mat, using the cane and taking it easy. 
I also broke down and ordered some pain cream I'd heard about awhile ago, but felt I didn't need it. Unfortunately, that won't come for a couple more days.

As for how I feel in relation to the lyme...I feel ok. Can't really tell about the fatigue because I can't do much because of the muscle injury. 
Needless to say, I didn't get to take extra A-biotic before and during the full moon.
Will have to try again next month. 

We watched fireworks from our front yard this year. Our neighborhood throws a great show at the park behind the neighbor across the street. 

Yesterday, my husband drove me 2 hours to my see my integrative doctor.  I hadn't seen him since December when he informed me that I had tested positive for 2 bands of lyme. He was interested when I told him about the whole ordeal and some of what I had learned. I gave him some information on how to treat acute lyme should a patient of his come in with a recent tick bite. I also gave him Dr. Burrascano's  big PDF on how to treat lyme, which has a questionaire of symptoms in it.

I had my doctor do labs for the following:

all hormones-free t3 + free t4, estrogen, progesterone, free testosterone, B12, A, D, cholesterol, CBC/iron, Epstein-Barr and liver enzymes.
I also had him write me a prescription so I could have my blood drawn at a local Labcorp for CD57 since it has to be handled in a special way. 

Will let you know how things turn out. 
Will continue being on the Restore Program from Vital Plan this month and probably for several more. I've been sick a long time and most lyme patients take 1 to 3 years (if they're lucky) to get well. 

Hope today is a good day for you,


PS: this is the cream I ordered that was recommended by a well known lyme doc, (can't remember which one) so I ordered it. Will let you know how it works as soon as it arrives and I get to use it. The reviews were really good for it, as well. 

Update:, while a well known lyme doc recommends this cream, it didn't do anything for my pain. It smells pretty good though. 

Here are my symptoms as of today:
extreme fatigue - don't know... with this new injury
Numbness, tingling in feet hasn't gotten better
swollen pads on bottom of feet near toes- this is as bad or worse than it's ever been.
dizziness- only when tired
difficulty finding words (1)
blurry eyes ( comes and goes)
urgency  (2)
light sensitivity (1)
noise sensitivity (1)
startles easily (2)
muscle pain (10+ in the hip/lower back for the week- now it's about 2)
Muscle pain everywhere else- can't tell as it's overshadowed by my injury
aching forearms-less than last month
muscle weakness (6)
high pitch ringing in the ears/low pitch ringing - high pitch comes and goes
98.3 to 98.6  
Down about 27 pounds (130)


  1. I hate to hear how much pain you were in. I sure hope you get relief soon.

  2. Keep looking forward, glad you got a diagnosis. Lyme symptoms are s lot like Fibromyalgia- except Fibro goes on forever, not 1-3 years. I would like to trade. ;)

  3. Pam: I am so sorry to hear all that you are still going through. How very difficult for you and your entire family. One of my brothers, who we just visited up in Mass., has been diagnosed with Lyme and is on antibiotics. He says its working...except for the awful side effects. My other brother lives way up in northern Vermont, where there is no Lyme. Can't believe it, but it's true. None. Amazing, no? Anyway, I hope the healing continues and you have a little more energy each week. What a tough time. Sending you all good thoughts, my friend.

  4. Pam, so sorry you are going through this. Hope you have the shorter time to get through this. Hearing so much more about lyme these days.