Saturday, March 21, 2009

Las Vegas

I managed to wear my 20 year old out in Las Vegas! I felt 100% the whole four days I was gone! I kept up with a 20 year old, and even woke up before her every morning. We walked miles, and miles, and miles .... if you've ever been there, we walked through many casinos working our way from the MGM Grande, stopping for some mac and cheese and creamed spinach at Smith and Wollensky's (we had steak there the night before, came back to try the mac and cheese the waiter was trying to get us to order as a side dish .... didn't want to take our appetite away from the steak), and ended at the Wynn. LONG walk. We had some carrot cake, a latte, and split a bellini at the Wynn. I bought a cute hat. :-D

I didn't have any breathing difficulty at all while we were gone ..... or any other symptoms, but had shortness of breath within a couple hours of returning. I'm hoping this slight fatigue and shortness of breath is caused by the mold in our bathroom ..... I'd hate to have to move. We have been planning on remodeling the bathroom, but I really think we need to move it up .... immediately. It's really bothering me that I know that away from my house I am symptom-free.

I haven't used the Bionic in a week now. I don't seem to have any other symptoms than the shortness of breath and fatigue. I plan on continuing juicing, eating healthy, my dark chocolate habit, my latte habit, and some good supplements. I also plan on continuing my biweekly lymphatic drainage massages.

I hope all of you are well. I have a question to throw out there ..... since many of you have Lyme, what is the number one thing that you need (aside from medical care) that is not provided for Lyme patients? I'm just curious ....

Saturday, March 14, 2009


I figured out where this fatigue is coming from .... remember when I said I cut back on thyroid meds because I thought it might still be too high? Well, I think I cut back too far on them. I started taking 5 mcg of Cytomel (was on 10 recently, and 20 before Germany) and the energy level is right where it should be. In fact, today, I don't have any symptoms at all. Woohoo!

Friday, March 13, 2009

Too much?

As you know, I have been fatigued from treating with the blood. It's not tiredness like from lack of sleep, it's different. It's more like a lack of motivation to get out of the chair. That is a far cry from where I was when I was sick when I couldn't even hold my head up, much less get out of the chair without substantial effort .... now I CAN get out of the chair, I just am not motivated enough to.

I have been keeping up with working out - 30 min. cardio and 30 min. weights and stretching. I have been cooking, cleaning, etc. .... all the things that moms do ... driving .....

But this fatigue permeates everything. I'd rather just sit around. That is so unlike the real me!

So I was talking to a well-informed fellow-Lymie-who-went-to-Germany yesterday. When I told him I was treating with blood, he said, "Only once per week, right?" I said, "Uh, no, twice per week, like the Lyme treatment we did in Germany." He said, "Nope, you're only supposed to treat with blood once per week."

I've treated five times with blood ... first one at 25%, the other four at 100% ....

Now I will take a week and a half break from photons, except for the photons I will be absorbing out in Las Vegas next week with my daughter .... it's supposed to be in the 80's.

Hopefully, this rest in the middle of treatment will help me catch up with myself. I'm running a race, and instead of taking days of rest, I'm running full force day after day. As the dear doctor in Germany says, this is a marathon, you don't run marathon races every day, you rest ... well, that's sort of what he said .... you get the idea. So, I'll be resting out by the pool beginning on Sunday. :-D

Tuesday, March 10, 2009

Quick update

I did treatment #3 at 100% power with blood last night. I didn't sleep longer than normal like I normally do after photon treatment. I didn't have left-sided pain, and my shortness of breath is minimal with no chest tightness.

I have been fatigued for the past few days, since Saturday. I have two sick kids, so perhaps that's why. If you're a poster on Lymenet, you know that has been a source of stress for me lately, and in fact, I'm on a hiatus from there till I'm feeling better again, so perhaps that has something to do with it. Stress is not good for the adrenals, and I'm building mine back up after a prolonged illness. I've also forgotten to take my iron supplement for the past few days. It's hard to remember everything is not Lyme, but it appears that I have several options of where this fatigue might be coming from aside from Lyme.

I did end up stopping Cytomel completely. My basal temperatures were higher than 98.6, and basal temps are a good indicator of thyroid function. Some docs say even better than blood tests. My shortness of breath, chest tightness, and insomnia are all improving. Of course, some of this could be from treatment as well.

During my month off, I actually forgot how difficult treatment with photons is. My body is working on these lingering infections/symptoms, and I feel it. I am anxious to take my next break!!! I believe 3 more treatments and I'll be taking time off again ... that's six treatments with blood, not including the one at 25% .... Dr. W uses six treatments for Lyme.

Sunday, March 1, 2009

Treating again

My almost four weeks off treatment went really well. I took the supplements I mentioned previously, though I cut out the kelp. I continued to juice, eat healthy, and exercise.

I still am not sleeping great, but am getting by on a half an Ambien. I seem to wake up at the slightest noise (I sleep with earplugs, so that helps). I sleep straight through when hubby is out of town .... maybe it's HIS fault I wake up, LOL! Even with wakeups, I'm getting nine hours total per night.

All my pain is gone, even the left shoulder pain and I've been practicing my flute more than I used to. The fatigue is gone, too.

My doctor wouldn't send me a thyroid test because the testing is not due till next month .... so I didn't get that test taken. I reduced my thyroid meds myself (bad to do, but I called twice about getting the test done early, grrr) and cut out the kelp.

The shortness of breath has still been bothering me along with some chest tightness. Not enough to make me feel bad, but enough to be very annoying. I remembered that I got psittacosis around the time I started declining with the Lyme. Psittacosis is a respiratory disease caused by chlamydia psittaci .... it causes the two symptoms I'm still having. Of course, it's as hard to get diagnosed with Psittacosis as it is with Lyme (never got a diagnosis, but got treated anyway). Since so many with Lyme get chlamydia pneumonia infections in a chronic form, I'm thinking that perhaps the chlamydia psittaci is still lingering. Just a theory.

I don't think I'll be able to find nosodes of that illness, besides, I'm ready to treat with blood to mop up all the remaining pathogens I might have. I started this new protocol on Friday. It was a JOKE trying to get a few drops of blood out of my fingers! I had a safety pin, some rubbing alcohol and fear of pricking myself. Hubby said he'd be happy to do it ... yeah, right, not in a million years! So, instead of getting one good prick and getting enough blood, I pricked about four fingers to get a few drops. I mixed the blood with potato vodka as the doc in Germany said was okay to do.

The breathing problems have let up slightly. I have more energy. I really don't feel sick at all!!! :)

I did have flare ups after the treatment. The left side of my abdomen was bothering me a lot. It was like there was something there that didn't fit .... spleen? I have a rib that is detached on that side ... Dr. W asked if I was in an accident when I showed it to him (he's also a chiropractor) .... I've had a lot of left-sided pain throughout the illness, sometimes severe ... and guess what? I've seen spleen pain on lists of Psittacosis symptoms! Anyway, that flared up after treatment with the blood. When I was really symptomatic, this pain was almost enough to get me to go to the ER ... severe pain that needed painkillers. The flare up was not that bad at all, but terribly uncomfortable.

So, I'm a couple days past the first treatment at 25% power and feeling great! GREAT! I will increase the power to 50% tomorrow.

I went another month without a flare up. I am not symptom-free so I don't consider that to mean I'm in remission, but I think I'm really, really close.

I'm also looking forward to the thyroid tests which I guess will be next month.

I tried to put a counter on this blog to see if people are still reading .... I'd love to know (let me know either here or wherever else you see me). I hope this finds all of you well. Take care.