Just a record-keeping update:

 

Barely 9 days into it....I believe I have begun herxing from the Babesia treatment.  Muscle aches, abdominal pain, anorexia, diarrhea, nausea, and fatigue.  I stopped Mep/Azith for the past two days to recover a bit of the strength I had regained after getting out of that 'Hotel California' hospital.  Surprised to be herxing so soon...but I suppose it is a good sign.

 

Happy to share that I have achieved my first PT goal and am now independent in my own home**yea!**  Now I can focus on strengthening my legs.  PT is bringing a walker on Monday so I can get started,.

 

Also, since I am kind of back to normal, I got started on the first leg of my Lyme/+coinfections with Mepron to treat the Babesia.  It is quickest and easiest to treat and once that is complete I can move on to treat the Lyme and Erlichiosis separately.  They are easier to eradicate after the Babesia is gone.  Two doses of Mepron so far.  I've read that it takes about two wks for the herx'ing to start--not sure if that is accurate.

Time will tell...

All I know for sure is that I want to get out of this wheelchair pronto.

After being virtually held hostage for three weeks in two hospital[s], I threatened to leave ama[against medical advice] so they finally discharged me.  I feel like I've been in a prisoner of war camp, but without the Stockholm Syndrome.  I feel no affection for those who tried to coerce me into getting a baclofen pump.  No sleep, meds that made me feel worse, therapies that didn't seem to help.  Seriously, I will likely need time to recover from the assault that was my hospital stay.  Post traumatic stress disorder.  Please forgive my writing this...it is merely to help myself process through this experience.

 

Have been in hospital since 9/15 to treat msi [5] flare up.  Had one active lesion.  Three days iv steroids, now tapering.  Leg muscles not relaxing well.  Considering Baclofen pump implant.  In rehab center until strong enough to go home.

 

Stubborn rehab doc here cannot explain why Zanaflex makes me feel worse. 

Does anybody know if Zanaflex has sulfites in it?  This would make sense.

An update for the record.

 

After 2+ mos. off the abxi [7], I reluctantly had to admit that I have a new, deteriorated baseline. 

 Ugh.

 

 On top of that I was worsening rapidly by the day, so restarted Azith 250 M-W-F.   It has always made me feel better in the past, so am hoping that will happen once again.  [??]

 

One full month off all abxi [7] per severe prophyria.  During that time, I tried adding Iodoral to my skeleton crew of supps.  12.5mg tab did nothing, 25mg caused increased clonusi [9], 50mg caused pounding heartbeat/insomnia/spasticity.  I shelved it for now.

I also restarted Wellbutrin XL to deal with increased depression/fatigue.  It caused increased clonus and some vague vision problems.  I shelved it, also. 

 My whole purpose in life has boiled down to reducing clonus at virtually any cost.

Ten days of being downstairs now in my 'second' bedroom.  I have not even ventured to try ascending the stairs just yet.  Consistent trouble continues with even my good leg--cannot lift or bend it much at all.

After nearly three weeks of living in and around my bedroom[and too discoordinated and weak to go elsewhere] I have come downstairs.  My sons set up a bedroom for me in my husband's office on the main floor right next to the powder room and just a few steps from laundry and kitchen.  I thought I'd be much happier, but the weakness and tight/wobbly, halting gait make me feel afraid to ambulate.  I force myself to traverse the length of the hallway[the one I had the energy to paint in March] twice daily by pushing a travel wheechair with hand brakes.  Each step requires much thought, planning and concentration.  Tiring and humiliating, but somehow through my fear I am doing it.  

 

Time for a record keeping update.

 

The blog I just spent an hr typing just disappeared when I hit a wrong key....hmpf. So I will attempt to be brief. Great Milestone: I took experimental Prilosec with Pyruvate from mid Feb '08 to Mid April '08. A very hopeful and happy time during which I cleaned my entire house and re-painted. It was like a magic bullet. Not-so-great Milestone: Stopped the Prilosec as it caused constipation and switched brands of Pyruvate as the cayenne hurt my stomach. Downhill from there with increasing spasticity, bladder spasms, nausea, leg heaviness, weakness, knee joint swelling and extreme difficulty walking.

With Springtime finally here and things going so well for me I thought it was about time for an update. Since the inclusion of Prilosec OTC and Calcium Pyruvate six weeks ago I have improved tremendously! I also added in Inositol and Ribose, and have doubled the Norwegian fish oil caps to support my nervous system while I discontinue antidepressants. I am still waiting for the other shoe to drop but here are the changes: 1. Able to successfully discontinue Wellbutrin XL 2. Able to tolerate Flagyli [21] pulses now [timely and full dose] 3. Able to tolerate 600mg NACi [23] daily[first time since I began CAP] 4. Beginning to gradually reduce Zoloft and Trazadone 5. No more strep-throat type neck aches, etc 6. Previously chronic low grade temp. is now a RARE event

A little wordplay to celebrate my current state of relative wellness. My trial of pyruvate/Prilosec one hr before abxi [7] has been a tremendous success! I began with my last pulse. While I have been waiting for the other [horse]shoe to drop, I just keep feeling better and better so have decided to post my results. Not only have the nearly constant strep-throatish aches, ear pain and burning myalgia been quelled, but I also can now take 600mg NACi [23] once daily! I suspect that I can also do regular, timely pulses now. I will start pulse #21 this weekend....AND I feel READY to do so.**Wow!** Of course I have hit the supplementsi [27] extra hard to deal with porphyriai [28], but I think the "py-Pri" combo has been the answer for me. I must have quite a bacterial loadi [29].

I want to share that my very vibrant father passed away today. He was a fighter though until the end. He was 86. I am remembering fondly how he was the always optimistic rock of our family, a lark who was always whistling happily even when my dear mother, God rest her, was worried or anxious about something. I adopted that way of life when I was blessed with my three children, even since the msi [5] diagnosis six years ago and throughout the past 2.5 years on the CAPi [31]. It has been challenging especially when they see me seeming much worse, like today for example; fraught with grief I cannot get either of my legs to bend at all and I am feeling scared. If only I could get these darn muscles to relax. Anger and fear...that is what I feel, but mostly very very sad. -kk2

Finishing up pulse 20 this week. One pill each day X five days. I can manage it. Pulse 19 in Nov '07 was a whopper[3X/day, 5 days]. The burning myalgia, strep-throatish aches, mild fever and spasticity sent me searching for my dusty old bottle of Baclofen....and ibuprofen. It easily took two months to recover to baseline and during that time I lost huge clumps of hair on a daily basis. Sarah will want to know that I had to clean the shower drain for the first time in two yrs. In other words it was clear that there was a lot of die-off. A. Lot.

As you may know, my 85 yr old father in AZ had a stroke several weeks ago. His recovery has been stinted by a chronic infection[sound familiar?] He had developed sinus infection/bronchitis in early January, then had the stroke while on his eighth day of nebulizers and Levaquin. The stroke doc at the hospital knew nothing about the infection so he deteriorated. He had brain inflammationi [34] which made him sleepy and non-interactive and he could not get rid of the increasing secretions on his own. The doc eventually honored my request to restart and complete the Levaquin.