Watch how my colors change based on my activity level. If I do a little too much (and who gets to say what is too much) I get thrown in Antibiotic Bed Jail!
Green Activity: Too much and you are forced to slow down
Yellow Illness: Read your speed and check your colors before a forced full halt
Red Meds: You got a ticket and your put in BED JAIL
Orange Review: Look back to see changes needed going forward
Since the Jan 2011 diagnosis of CFS, I am really truly to study the cause & effect of my illness. Watch when tickets get issued here below.
2011
JULY 2011
01 June 2011 Starting Bactrim 160mg + 800mg, 2 pills a day for 7 days for bladder infection
4 July 2011 Got a pedicure all was o.k.
7 July 2011 After my international flight I found an infection in my toe at the nail on my right foot. I massaged it and it seemed to disperse. Had an appointment at Kaiser to check it out plus blood lab work ups.
12 July 2011 Cycle arrived.
13 July I met my infectious disease doctor who has agreed to treat me. He support my VALTREX medication. The appeal process gets dropped and the head pharmacist approves my med for about 1 year.
19 July 2011 Immune Doctor visit where we ruled out a chronic yeast infection. I am so relieved, plus numerous immune lab tests and all came out clean! Yeah!
20 July 2011 Oral out patient surgery of 1 tooth gum line being restored. Intolerant to pain meds.
Antibiotic pretreatment started to be followed with 7 days of Amoxicillin 500 mg 3 times a day.
Reuflor Lactobacillus 1 per day everyday, Valtrex 2000 mg per day, Atarax 25 mg every night, and I stopped the Himuno star syrup for 3 weeks now. Now that the antibiotics are ending I want to add the syrup back.
21 July 2011 Dr. Henderson was happy with my progress on Valtrex and being off antidepressants. He suggested a new second antiviral to add to my regime. Kaiser infectious disease doctor said NO. Dr. Henderson believes I get THRUST throat infections when i say my throat burns so badly. He thinks I may be getting it gone myself without treatment. This for me confirms I need to stay on that probiotic!
25 July 2011 Extra visit to oral surgeon for fear of infection to be safe. he clears me of all being ok and removes the stitches.
27 July 2011 Kaiser send me an intimidation letter telling me the compliance department is investigating my elligibity for their small business health insurance. I provide documentation and add to the formal complaint of discrimination against them. I am pushed to take legal action as I sense that is what they want. Instead I say I want change and rights for patients with CFS.
28 July 2011 Throat glands swollen and aching. I have no reason why...
August 29 & 30th I have appointments scheduled in Florida with Dr, Nancy Klimas. It will be expensive but after evaluating my life and my health... what could be more important then that for me and my girls. I need to make it to 75 YOA for my littlest daughter!
It will be total, I believe about $5000 (including flight, hotel, and workups) but I will have had blood tests that are beyond what Kaiser can or is willing to do. I will get a recommendation of what level of exercise I could return to, and what additional drug doses or new drugs are best for me!
I hope to get to meet Dan and get my story interviewed through the process for patient advocacy. I will start a new page with my intentions of KP and global CFS advocacy.
JUNE 2011
01 June 2011 Starting Bactrim 160mg + 800mg, 2 pills a day for 7 days for bladder infection
05 June 2011 Stopped all antibiotics for now. Bladder infection seems to be at bay. I did suffer a 2 week relapse but it was milder than any other relapse I had. I still work up early but just needed rest on the couch versus living in bed!
What I can finally say is the back ground noise in my head stopped. While I was sick, I did not know what to call it but now that it has cleared, i can describe the difference. My brain seem clear. there is not the noise and aggravation I have lived with for 5 years. I have started to function!
My joint pain is low but still have freezing up moments.
14 June 2011 Did not feel good all day. Lymph glands in neck hurt. Feel like the flu is arriving in my body. Slept from 2:00 p.m. to 11:00 a.m. this morning, 9 hours only. But felt bad all day...
I think I pushed it too hard believing I was a FAKE cured. Still it is 100% better and tolerable to live right now with these meds then without these meds. My mind seems to be functioning but my body is not there.
22 June 2011 Been severely sick with a burning sore throat, sinus, entering chest now cold. I sweat-ed in Rome at the embassy, then went into a/c. I fought with the Embassy and started crying. All got resolved. Walk in intense heat and the train ride back with window open. Next day (Friday) was horrible sick and gets worse each day, though I think it is getting better today.
23/24 June 2011
I started the formal complaint process with Kaiser after I saw the lack of protocol, interest, concern and updated knowledge about my illness.
Conclusion thoughts: Thought the antiviral med is helping 1000%, relapsed do happen. My mind has never felt so good. I am sleeping normal hours, I am getting out. I am in good spirits but.... my life still has to be very low key! I need all the support around me that I have. But the meds are a miracle as far as I am concerned.
29 June 2011
Current med doses:
Reuflor Lactobacillus 1 per day for 20 days then a break for the rest of the month.
Valtrex 1000 mg per day two times per day for a total of 2000 mg.
Atarax 25 mg every night to help with allergies and to sleep calmer.
Himuno star syrup 2 tablespoons every day to naturally help my immune system.
And that's it!!! I am free of all others!
MORE CONCLUSION THOUGHTS:
This antiviral had given me 30% of my life back with my mind and with refreshing sleep. My immune system is still very low and fragile. My physical energey though better is low, but much better. The naps have turned to sitting up and resting and I sleep only about 8 a night and I do feel refreshed. But all it in regards to where I was being sick these past 5 years and not in % to where I was when falling into this trap.
The back ground noise in my head is gone and I can write and think and read for the 1st time in 5 years!
MAY 2011
02 May 2011 Ikea shopping, doing good. Bladder infection not letting up still on CIPRO 500 mg. per day.
03 May 2011 Cleaned the garden. Joint pain started to clear up drastically.
06 MAY 2011 Day trip to Perugia for couch. In afternoon started not feeling good. But still have bladder
infection and still on antibiotics
07 May 2011 Riding low not feeling so good...
08 May 2011 Ditto
09 May 2011 Riding low again
18 May 2011 Urine lab test came back full of bacteria severely my Dr. said. I started Bactrim 160mg + 800mg for 2 weeks, 2 a day.
18 May 2011 Urine lab test came back full of bacteria severely my Dr. said. I started Bactrim 160mg + 800mg for 2 weeks, 2 a day.
19 May 2011 Picked up Pam and Steve in Rome. Stayed in Spoleto for 3 days then Amalfi.
22 May 2011 Walked and Walked in Amalfi. Steve and Pam could not keep up with me. Felt like Sleeping Beauty work up after 5 years.
28 May 2011 Warm tingling has started and again like warm to hot water is being pored over my feet and other body locations.
28 May 2011 Warm tingling has started and again like warm to hot water is being pored over my feet and other body locations.
29 May 2011 Horseback riding
30 May 2011 Cleaned extensively art studio
Ended 3 type of antibiotics for bladder infection
31 May 2011 Up at 8:30 a.m. but back down till 2:00 p.m. definitely a small SETBACK RELAPSE
Concerned about bladder infection status, I believe I still have it.
APRIL 2011
09 April 2011 Valaciclovir 2000 mg. per day for Chronic Fatigue Immune Syndrome
11 April 2011 Vitamins started
14 April 2011 Throat culture taken
15 April 2011 Norma’s party and dancing
18 April 2011 Cipro 1000 mg.per day, started due to bladder infection
19 April 2011 Train to Naples
19 April 2011 Citralopram reduced from 30 mg. to 20 mg. per day
00 April 2011 Naples & very active late nights
20 April 2011 Cranberry pills started, vitamins stopped
22 April 2011 Train from Naples to San Giorgio A Liri
25 April 2011 Cipro 1000 mg. finished but still have infection
26 April 2011 Train to Spoleto
28 April 2011 New lab test needed, bladder infection still
29 April 2011 Toxicity of Valtrex went away for now. It took 3 weeks to get here.
29 April 2011 Cipro 500 mg. per day started at Dr. Fiorani’s request
30 April 2011 Reuflor Lactobacillus 1 per day for 20 days then 10 break, I started feeling pretty good.
30 April 2011 Performed with the walking street band. Let's see if this new med sustains me or whether
a red light gets issued...?
MARCH 2011
01 March 2011 SSDA agreed to pay
00 March 2011 Friends in for 1 week
02 April 2011 Severe burning throat started
FEBRUARY 2011
02 Feb 2011 Ran out of Valaciclovir 2000 mg. per day
07 Feb 2011 I did heavy labor cleaning up my court yard
09 Feb 2011 I became terribly sick
12 Feb 2011 Veclam 1000 Mg. per day, 7 days, because of red painful throat
13 Feb 2011 Sore throat continued
JANUARY 2011
05 Jan 2011 SPECT Brain scan
07 Jan 2011 Neurological psychiatrist visit with CFS - XMRV diagnosis
10 Jan 2011 VIPDX lab blood draw at Kaiser shipped out
12 Jan 2011 Valaciclovir 2000 mg. per day started for CFS but ran out at 3 weeks
15 Jan 2011 Flight back to Italy from USA
2010
December 2010
15 Dec 2010 Flight to Denver
20 Dec 2010 Joint pain continued in Colorado
NOVEMBER 2011
00 Nov 2010 Cipro 500 mg. started due to Kidney infection again
SEPTEMBER 2010
00 Sept 2011 Joint pain out of control started
AUGUST 2010
20 Aug 2010 Horseback riding pushing 200 cattle
21 Aug 2010 Face laser-ed
23 Aug 2010 Cipro 500 mg. started due to kidney infection, IV drip at triage unit
JULY 2010
00 July 2010 Bladder repair surgery
