Daughter being treated with Doxycycline for the Rickettsia

We saw Dr. Bock yesterday.  To sum it up:

Vindication.

We are firing the Floating physicians. 

• Hematology:  Fired
• Rheumatology:  Fired
• Infectious Disease:  Fired
• Neurology:  Fired

On Monday, we were scheduled to see new physicians at Massachusetts General Hospital.  We are holding off on that until we evaluate how she's doing after the antibiotic treatment.

The history of low platelets extends far back to 2003 when the gastrointestinal complaints began.  All these symptoms started in Sept 2003:

• headache
• backache
• stomachache
• fevers
• dizziness
• constipation
• low platelets

and all are listed as symptoms of Rocky Mountain Spotted Fever and Murine Thyphus.  Remember we found:

RMSF IgG Detected Abnormal

R. ricksettii (Rocky Mountain Spotted Fever)

Rickettsia (Typhus Fever)

R. typhi IgG Detected Abnormal

  

in her blood on 03/08/2011?  And this was run only because I insisted the rheumatologist run the Rickettsia Antibody Panel because of the flying squirrels.  He was so sure it would be negative.  However, Dr. Bock says those labs indicate 'borderline positive.' No one at Floating (Hematology, Rheumatology, Infection Disease) bothered to review the 43 pages of lab results.  No one at Floating believed us.  No one even called us back to review the labs.

With this lab result and the rest of her medical history, Dr. Bock says we need to start the appropriate antibiotic therapy immediately.  The CDC http://www.cdc.gov/ warns physicians:  don't ever wait for a confirmed laboratory test to treat because it is difficult due to the timing of the illness for it to show up in the labs and the sooner the patient is treated the higher the likelihood of complete recovery.   However, in my daughter's case it IS showing up in the labs.  Then she has all the classic symptoms and has had them for 7 1/2 years!

Also consistent with Rickettsia:

• Her BUN is dropping. 
• White blood cells are dropping. 
• She has elevated liver enzymes

The doctors at Floating have stopped looking for causes for low platelets and are giving a blanket diagnosis of Chronic ITP.  We are firing them.  Not one of them acknowledged her case history and put the puzzle pieces together.  7 1/2 years later we may be heading to complete resolution!

Dr.  Bock affirmed what my husband and I have believed all along:  CHRONIC ITP IS NO DIAGNOSIS AT ALL.  WHAT IS CAUSING THE LOW PLATELETS?

He immediately agreed with us that one of the Rickettsial agents is most likely the root cause.   In fact, he said 'it's a no brainer' and revealed his frustration with his medical profession.  Yesterday, he ran repeat labs for Babesia, Rickettsia, BUN, liver enzymes, CBC and many more.  My daughter's poor veins.

"A no brainer."  After 7 1/2 years of persistence on my part, seeking answers, my daughter undergoing numerous hospitalizations and possibly unnecessary infusions of IVIG and WinRho, stepping outside the medical norm and finding Dr. Kenneth Bock http://www.rhinebeckhealth.com/, there is hope.

She starts the Doxycycline this morning.  Twice a day for a month.  Check her platelet count in 14 days.

If this is it, one would expect the platelet count to rise and to stay between 150,000-400,000 for good.

Recent platelet counts are:

• 2/9/2011:  35,000
• 2/16/2011:  260,000
• 3/8/2011:  158,000
• 3/16/2011:  137,000
• 4/1/2011:  125,000

In Dr. Bock's words:  "Yes, it's rare.  But you don't not treat because it's rare.  You look at the entire history.  It's a no brainer."

Vindication.