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.
Wednesday, March 30, 2011
Dr. Kenneth Bock - Has Opening this Friday - Maybe he can solve the low platelet mystery
Just received a call from Rhinebeck Health Center that Dr. Kenneth Bock has an opening this Friday, April 1st. I had asked that the office put my daughter on the cancellation list. This appointment is much sooner than the May 17th appointment originally booked. We are taking it.
Do you remember Dr. Bock is the physician who discovered and diagnosed the Babesiosis? With the same symptoms returning, I wonder if he will look to rerun the Babesia FISH test. I wonder what he'll think about the flying squirrel problem in our house and that flying squirrels are known vectors for the Rickettsia bacteria. At the very least, it feels comforting to know that he will not discount these strange occurrences and rare illnesses but instead take a keen look at her history.
Will have to reschedule this Friday's newly-booked appointment with the new hematologist from MGH.
We see an infectious disease specialist at MGH on April 29. When I called to speak to someone in the department, it was reassuring that a) someone actually picked up the phone b) took an interest in my daughter's complex case c) kept asking questions to develop a full intake over the phone d) gave us the first available appointment and e) put us on the cancellation list.
This all begs the question: why does Floating believe her low platelets are due solely to Chronic ITP? Did they not see the lab results? My daughter has all the symptoms of Rocky Mountain Spotted Fever and Typhus Fever. Is is so far fetched she could have this? Could the numerous IVIG treatments have given her the very antibodies to her neutrophils and platelets that are causing their destruction? Why didn't Floating call in Infectious Disease back in 2004 when this all started? We don't expect to waste our energy pursuing these questions legally. It is what it is. But it is noteworthy.
So, it's good to get second....and third....opinions in life.
It's also good to never stop believing in your gut.
Hope to get some answers this Friday. At the very least I know we'll be taken seriously by Dr. Bock.
Do you remember Dr. Bock is the physician who discovered and diagnosed the Babesiosis? With the same symptoms returning, I wonder if he will look to rerun the Babesia FISH test. I wonder what he'll think about the flying squirrel problem in our house and that flying squirrels are known vectors for the Rickettsia bacteria. At the very least, it feels comforting to know that he will not discount these strange occurrences and rare illnesses but instead take a keen look at her history.
Will have to reschedule this Friday's newly-booked appointment with the new hematologist from MGH.
We see an infectious disease specialist at MGH on April 29. When I called to speak to someone in the department, it was reassuring that a) someone actually picked up the phone b) took an interest in my daughter's complex case c) kept asking questions to develop a full intake over the phone d) gave us the first available appointment and e) put us on the cancellation list.
This all begs the question: why does Floating believe her low platelets are due solely to Chronic ITP? Did they not see the lab results? My daughter has all the symptoms of Rocky Mountain Spotted Fever and Typhus Fever. Is is so far fetched she could have this? Could the numerous IVIG treatments have given her the very antibodies to her neutrophils and platelets that are causing their destruction? Why didn't Floating call in Infectious Disease back in 2004 when this all started? We don't expect to waste our energy pursuing these questions legally. It is what it is. But it is noteworthy.
So, it's good to get second....and third....opinions in life.
It's also good to never stop believing in your gut.
Hope to get some answers this Friday. At the very least I know we'll be taken seriously by Dr. Bock.
Tuesday, March 29, 2011
Fever gone this morning - so baffling
She awoke without any of the symptoms from last evening.
No fever, no headache, no eye pain.
Went to school.
We will check her temperature again this evening.
No fever, no headache, no eye pain.
Went to school.
We will check her temperature again this evening.
Monday, March 28, 2011
Low Platelets - or something else - new infection
OK. So the latest episode started two nights ago, March 26th.
She went out Saturday evening, March 26, with friends and returned home to pretty significant sciatic pain (1-10, 1 being lowest, 10 being highest) of Level 7. Really painful in her right leg. I massaged her leg to alleviate the pain. The pain traveled from the middle of her back to the top of her right foot. Nothing relieved the pain except for a massage---and that was just temporary.
Today is Monday March 28. She went to school, had a good day, took a late afternoon nap, and then reported not feeling so well after dinner. She took her temperature. It was 99.3 degrees. She has a headache that starts over her right eye and travels up and around the upper right quadrant of her head. She feels hot and cold and achy all over. No other symptoms. Nothing to explain the fever.
Floating Hospital has back-burnered her case. We talked with her previous pediatrician last Friday, March 25. He agreed we need a second opinion. He recommended Dr. Mark Pasternack, a Pediatric Infectious Disease specialist, at Massachusetts General Hospital. I will call tomorrow morning to get the first available appointment with him.
I wonder what level her platelets are. Last they were checked they were at 148. Now with a fever and infection they probably have come down.
She went out Saturday evening, March 26, with friends and returned home to pretty significant sciatic pain (1-10, 1 being lowest, 10 being highest) of Level 7. Really painful in her right leg. I massaged her leg to alleviate the pain. The pain traveled from the middle of her back to the top of her right foot. Nothing relieved the pain except for a massage---and that was just temporary.
Today is Monday March 28. She went to school, had a good day, took a late afternoon nap, and then reported not feeling so well after dinner. She took her temperature. It was 99.3 degrees. She has a headache that starts over her right eye and travels up and around the upper right quadrant of her head. She feels hot and cold and achy all over. No other symptoms. Nothing to explain the fever.
Floating Hospital has back-burnered her case. We talked with her previous pediatrician last Friday, March 25. He agreed we need a second opinion. He recommended Dr. Mark Pasternack, a Pediatric Infectious Disease specialist, at Massachusetts General Hospital. I will call tomorrow morning to get the first available appointment with him.
I wonder what level her platelets are. Last they were checked they were at 148. Now with a fever and infection they probably have come down.
Friday, March 18, 2011
Doctors are chalking up her low platelets to Chronic ITP, but we think it's Rickettsia related
So two days ago we saw the hematologist, the lead in my daughter's case. He quickly reviewed the lab results from the 15 tubes of blood drawn the previous week from the rheumatologist's orders. He didn't see that the Rickettsia Antibody Panel with Reference to Titers had indeed been ordered (my insistence with the Rheumatologist) and that these abnormal results were returned:
RMSF IgG Detected Abnormal
R. ricksettii (Rocky Mountain Spotted Fever)
Rickettsia (Typhus Fever)
R. typhi IgG Detected Abnormal
Her platelet count has now dropped to 148. Recent platelet counts are:
2/16/2011: 260
2/28/2011: 234
3/8/2011: 158
3/16/2011: 148
The hematologist has concluded she has Chronic ITP and has stopped searching for a different cause for her low platelets.
Also, the Epstein Barr Virus PCR lab result returned high
Reference level is < 200
My daughter's level was 10812.
We are pleading with the hospital to get her seen by the Infectious Disease specialist. Spoke today with the secretary of Hematology who arranged an appointment with ID two months out. Told her that was unacceptable, given the lab results. Waiting for calls from Infectious Disease (I called him again today) and Hematology and Rheumatology to follow up on the lab results and to get her seen by ID.
Checking out other options: MGH and Children's Hospital in Boston. Also booked an appointment in May with Dr. Bock (the physician who discovered her Babesiosis.)
My hunch is that the tick that bit her and caused the Babesiosis also carried Rickettsia or she was bitten by the tick and then contracted the Rickettsia from the flying squirrels in our house.
This is all just so exhausting......but I will never give up.
RMSF IgG Detected Abnormal
R. ricksettii (Rocky Mountain Spotted Fever)
Rickettsia (Typhus Fever)
R. typhi IgG Detected Abnormal
Her platelet count has now dropped to 148. Recent platelet counts are:
2/16/2011: 260
2/28/2011: 234
3/8/2011: 158
3/16/2011: 148
The hematologist has concluded she has Chronic ITP and has stopped searching for a different cause for her low platelets.
Also, the Epstein Barr Virus PCR lab result returned high
Reference level is < 200
My daughter's level was 10812.
We are pleading with the hospital to get her seen by the Infectious Disease specialist. Spoke today with the secretary of Hematology who arranged an appointment with ID two months out. Told her that was unacceptable, given the lab results. Waiting for calls from Infectious Disease (I called him again today) and Hematology and Rheumatology to follow up on the lab results and to get her seen by ID.
Checking out other options: MGH and Children's Hospital in Boston. Also booked an appointment in May with Dr. Bock (the physician who discovered her Babesiosis.)
My hunch is that the tick that bit her and caused the Babesiosis also carried Rickettsia or she was bitten by the tick and then contracted the Rickettsia from the flying squirrels in our house.
This is all just so exhausting......but I will never give up.
Tuesday, March 15, 2011
The Medical Mystery Continues -- Chronic ITP? Babesiosis? Epidemic Typhus?
My 17-year-old daughter has a complex medical history. Let's just start with that.
She has a team of specialists at Floating Hospital for Children in Boston, and not one of them has diagnosed her case yet.
It all began when she was 10 years old, with gastrointestinal complaints. The specialist began ordering tests, the common CBC one of them. It was discovered she had low platelets (thrombocytopenia.) For four years she was infused multiple times with WinRho and IVIG to raise her platelets. She was diagnosed with Chronic ITP (idiopathic thrombocytopenic purpura). One long-term solution was a spleenectomy. Thankfully, my husband and I shelved that one as it seemed too drastic. Good thing.
Her platelets seemed to resolve when she was 14. She then complained of not being able to pay attention. We had a private neuropsychological evaluation done by a psychiatrist. He diagnosed her with inattentive ADD and dysgraphia. We sought help from a world-renowned physician, Kenneth Bock, who was successfully reversing Autism, ADHD, Allergies and Asthma in children. It took 6 months to get an appointment with him. After running numerous lab tests, he decided to run a Babesia FISH test because in addition to the ADHD sysmptoms he knew she had a chronic infection. The lab confirmed Babesiosis with a positive result. She was treated twice before a negative lab result returned. Good thing we didn't remove her spleen because Babesiosis is fatal for splenectomized patients. Always good to follow your gut.
All other symptoms (unrelated to the Chronic ITP) --- headaches, backaches, stomachaches, unexplained and recurring fevers, achey skin, constipation ---- all were eradicated after being treated for the Babesiosis. That is ---- for four years.
Two months ago she began feeling ill again. First we thought it was a viral URI. Then two weeks later she suffered severe menstrual cramping. Then a week later another infection. Here are the weird symptoms:
So she received IVIG to raise her platelets. She is now being seen by Rheumatology because of antibodies not only against her platelets but also to her neutrophils. She also has had anticardiolipin antibody and antiphospholipid antibody seen in her blood.
Rheumatology is rerunning the classic ANA test for Lupus, which has been negative in the past.
The doctors are perplexed. Her blood anomalies don't fit any known disease. If she has Chronic ITP why is she producing the other antibodies?
Oh, and by the way, we had Flying Squirrels nesting in our chimney and in our house. Google research pointed me in the direction of Epidemic Typhus caused by the bacteria known as Rickettsia prowazekii. The results for that test are still pending.
Anybody out there who has a similar story to tell or who can shed some new light?
She has a team of specialists at Floating Hospital for Children in Boston, and not one of them has diagnosed her case yet.
It all began when she was 10 years old, with gastrointestinal complaints. The specialist began ordering tests, the common CBC one of them. It was discovered she had low platelets (thrombocytopenia.) For four years she was infused multiple times with WinRho and IVIG to raise her platelets. She was diagnosed with Chronic ITP (idiopathic thrombocytopenic purpura). One long-term solution was a spleenectomy. Thankfully, my husband and I shelved that one as it seemed too drastic. Good thing.
Her platelets seemed to resolve when she was 14. She then complained of not being able to pay attention. We had a private neuropsychological evaluation done by a psychiatrist. He diagnosed her with inattentive ADD and dysgraphia. We sought help from a world-renowned physician, Kenneth Bock, who was successfully reversing Autism, ADHD, Allergies and Asthma in children. It took 6 months to get an appointment with him. After running numerous lab tests, he decided to run a Babesia FISH test because in addition to the ADHD sysmptoms he knew she had a chronic infection. The lab confirmed Babesiosis with a positive result. She was treated twice before a negative lab result returned. Good thing we didn't remove her spleen because Babesiosis is fatal for splenectomized patients. Always good to follow your gut.
All other symptoms (unrelated to the Chronic ITP) --- headaches, backaches, stomachaches, unexplained and recurring fevers, achey skin, constipation ---- all were eradicated after being treated for the Babesiosis. That is ---- for four years.
Two months ago she began feeling ill again. First we thought it was a viral URI. Then two weeks later she suffered severe menstrual cramping. Then a week later another infection. Here are the weird symptoms:
- cycling fever (not too high but only at night - fever breaks in the morning)
- skin rash
- headache
- skin and muscle aches
- cough
- low platelets (35,000)
- eye pain (just the right eye, but painful to avert her eye)
So she received IVIG to raise her platelets. She is now being seen by Rheumatology because of antibodies not only against her platelets but also to her neutrophils. She also has had anticardiolipin antibody and antiphospholipid antibody seen in her blood.
Rheumatology is rerunning the classic ANA test for Lupus, which has been negative in the past.
The doctors are perplexed. Her blood anomalies don't fit any known disease. If she has Chronic ITP why is she producing the other antibodies?
Oh, and by the way, we had Flying Squirrels nesting in our chimney and in our house. Google research pointed me in the direction of Epidemic Typhus caused by the bacteria known as Rickettsia prowazekii. The results for that test are still pending.
Anybody out there who has a similar story to tell or who can shed some new light?
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