IDSA - busted!

I've written earlier about the Infectious Disease Society of America (IDSA).  This is the group that sets guidelines for Lyme treatment, and the group to whom insurance companies and government listen.  IDSA insists that late-stage Lyme does not exist; that the any lingering problems are the result of something else.  One panelist went so far as to call late-stage Lyme the "aches and pains of aging." Every single person in my Lyme group has been sent to a psychiatrist. These "healers" of the IDSA were caught red-handed by the Connecticut Attorney General with multitudes of conflicts-of-interest and other significant problems with their guideline writing.

Now, in a new article in the Archives of Internal Medicine, we learn:

Conclusions  More than half of the current recommendations of the IDSA are based on level III evidence only (opinion). Until more data from well-designed controlled clinical trials become available, physicians should remain cautious when using current guidelines as the sole source guiding patient care decisions.*

This is a break-through article for Lyme sufferers. Already, one of my doctors has used it to successfully argue for care for one of his patients. What a sad state when a small group of supposed "healers" is able to control life and death decisions that should left to the client and physician. Unfortunately, we can look forward to more of this nanny state rigor with the full implementation of President Obama's health plan.

For now, slowly, the iron grip of IDSA is breaking.
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*Arch Intern Med. 2011;171(1):18-22. doi:10.1001/archinternmed.2010.482

 

Thermography is a scam

I had it. It is a method of sensing heat within various organs. A breast tumor is supposed to give off heat and change the appearance and color of the output. My thermography did not pick up any of my cancerous lesions. $300, k-ching, k-ching. Then, I learned that thermography will not detect breast cancer until it has become invasive. Mine appeared not to have spread although my surgeon was concerned about a 6 cm line of tissue between the two cancerous spots. The thermographer begged me not to treat my cancer but to have ($300 k-ching, k-ching) thermography every three months, and to use various alternative, natural treatments and potions. Throughout my time there, I had to keep pinching myself into realizing I was not buying a vacuum cleaner or used car.

In the process of recovering from a bilateral mastectomy, I can only be grateful that I got that mammogram and that it was sensitive digital.  In addition to the ductal carcinoma in situ, they found one 1.7 mm invasive tumor.  Thermography didn't pick that up either.  I don't know how much invasion is necessary for it to show on thermography.

God, I am a lucky girl.

I had a bilateral mastectomy with DIEP flap construction on January 10. The surgery took nine hours - pretty major. It took a general surgeon and her assistant, and two plastic surgeons. It is a miraculous surgery. There are only two plastic surgeons in Colorado who do this surgery, and I think only about 60 nationwide. I could not have asked for more dedication and care from every single person I dealt with.

I was in the ICU all night where they carefully monitored the skin grafts. Data was sent by my breasts to my doctor's Blackberry!

My surgeon called when pathology came back. She said I had no idea what I had just done for myself. They found the two known areas of DCIS (ductal carcinoma in situ) in the left breast, but also found a 1.7 mm invasive tumor. Surprisingly, they found a 1.5 cm DCIS in the right breast. It had never shown on a mammogram. My surgeon sounded like a kid at Christmas.

The oncologist I saw is a love. He was recommended by my friend (7.5 years ovarian cancer) as the only oncologist who wouldn't give up on her. Her last scan was good. The oncologist wants to track my cancer markers and not do any scanning, chemo, etc., for now. That is perfectly wonderful with me. I also told him I am going to use a small amount of estrogen and he was good with it.

I've had some Lyme relapse but trust that will resolve with time.

I had a hard time coming to grips with the idea of losing my breasts and the waiting time was awfully hard. I'd watched a video of the surgery (which probably wasn't a good idea), and the images haunted me.

Throughout my ordeal, I had a huge circle of family and friends hugging me - a perfect expression of the Lord. One friend brought us 19 pounds of chicken soup.  It has been about all I've been able to eat for the last week+. Flowers abound.  It is good to have flowers when you're alive to enjoy them. I hardly know where to start with the thank yous.

Now that's it's over, I feel only gratitude and joy. My youngest child got engaged during this time and I will be alive and well to make her dress and do her wedding. I will be alive to hold her babies. There is no "happy face" happy enough to match my elation. I am alive!

PICC line for about $320 a month

Right after I reached my $6,000 deductible, Blue Cross dumped me off. Infusion service was costing nearly $4,800 a month with the infusion company I was using. I had to shop quickly. This is what I found:

Daily needs for a single (purple) PICC line:

Item description, size, manufacturer, stock number, #/order, cost, source
Flush - Sodium Chloride .9% pre-filled, 10 ml, Kendall, 8881570121, 120 pcs, $80, (Local pharmacy)
Heparin pre-filled, 5 ml, Kendall, 8881590125, 60, $19, (Local pharmacy)
Infusion pouch, filled, 50 ml, Hospira, NDC 0409-7984-36, 80, $100, (Local pharmacy)
Syringe (empty), 20 ml, BD, REF 309661, 100, $18, (Local pharmacy)
Needle for syringe, BD 18G1, BD, 100, $8, (Local pharmacy)
Solution Set with DUO-VENT Spike, 72 - 100", Baxter, ACT5439s (or ACT5435s), 48, $182, Web*

Weekly Needs:

Item description, manufacturer, stock number, #/order, cost, source
Dressing change sterile tray w/Chloroprep, Medstream, MSDC-8000LFCA, 30, $117, Web*
StatLock, CR Bard, VPPCSP, 50, $404, Web*
Ultrasite Valve, Braun, 415110, 30, $85, Web*

I just got a new PICC line and the nurse strongly suggested I use a BioPatch to control infection.  They are available online and cost about $10 each.  That would add another $40 to my monthly cost. You can see the BioPatch here: http://www.ethicon360.com/products/biopatch-protective-disk-chg

Meds:
Rocephin powder, generic by Hospira NDC 0409-7335-03, 2 grams, 90, $188, Chain pharmacy*
Sterile water for Rocephin mix, 20 ml, Hospira, 100, $45, Chain or local pharmacy

*For further information, contact me with your email address. You will need a prescription for some of these items.

A good PICC waterproof cover: http://www.drycorp.com

Note: For those who look upon Blue Cross as the big baddie, remember that government as a sole payer will be worse. If government is the sole arbiter of what health care you get, you won't have the freedom to go shop and compare like I did. Government will listen to IDSA just as Blue Cross does. Medicare recipients can't even use their "insurance" unless they see government-approved doctors. That leaves out LLMD visits.

Why not a health care system built on freedom?


..

Ollie is gone

We put Ollie down yesterday. We gave him a sedative, which he fought. He sat on Dick's lap for a while and then tried to make it back to his bed under my desk. He passed out, stretched out, by the wall about four feet away. It is the first time I've seen him relaxed in a long time. He usually sits, crouching or lies wrapped in a circle.

When he got to the vet, she gave him another shot to knock him out and then shaved his front legs, looking for a good vein.  She said he was terribly dehydrated.  Moments after she injected into his vein, he just went  peacefully to sleep without knowing anything.

We spent the day crying and disinfecting the floors as we had no idea how much had been tracked around. While we were careful and cleaned often, I know he made messes at night by dragging his tail around. In the day, we always immediately cleaned him up.

Little Boy and Vanna have been in mourning, pacing around this back area of the house and Ollie's box. Little Boy wouldn't let me touch him and Vanna was just more freaky than usual. They both ended up sleeping with us and seemed to settle down in the night.

The house is empty without Ollie. He's been here for going on 21 years.