Well, I'll be.
Today is a happy day for our family. For the second time in history since 2003, her platelets have risen, this time not coincidentally.
The first time occurred in 2004 after a weekly acupuncture visit. We were so hopeful at that time that the acupuncture would resolve her low platelets. It never did, and after valiant efforts made for a full six months, we discontinued those treatments.
Today is Day 14 of the Doxycycline treatment for the Rocky Spotted mountain fever and Murine typhus caused by Rickettsiae agents. It is not an easy treatment to withstand: yesterday she became extremely nauseous after taking her morning dose (on an empty stomach, as prescribed) and was released from school at 8AM because of vomiting.
Today is Day 14 from the last platelet count:
April 1: 125,000
April 15: 174,000
I am convinced to the core this is not a coincidence. I believe her low platelets have been caused by both Babesiosis and either/or both Rocky Mountain spotted fever and Murine typhus.
After she was treated in 2008 for Babesiosis, all symptoms eradicated but her platelets hovered around the low end of normal: 150,000. They remained normal but never returned to pre-2003 levels of 350,000 because we were unaware of the Rickettsiae exposure at that time, no one thought to run the tests for diseases caused by those bacteria, and she was only treated for the Babesiosis. The Zithromycin and Biaxin, the antibiotics used to treat the Babesiosis, must have killed off some, but not all, of the Rickettsiae bacteria.
We see Dr. Bock again on April 26. Let's see what her platelet counts are then. I'm betting they will be higher than 174,000.
:)
Friday, April 15, 2011
Saturday, April 2, 2011
Daughter being treated with Doxycycline for the Rickettsia
We saw Dr. Bock yesterday. To sum it up:
Vindication.
We are firing the Floating physicians.
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:
RMSF 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:
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:
Vindication.
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
RMSF IgG Detected Abnormal
R. ricksettii (Rocky Mountain Spotted Fever)
Rickettsia (Typhus Fever)
R. typhi IgG Detected Abnormal
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
Vindication.
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