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Life Changes - More Platelets
I had ITP. I am now healing. Am I cured, you may ask? Probably –
no, make that almost definitely – as long as my body’s healing system remains
healthy. Why am I telling my story now? Maybe my experience can help someone
else who’s just been diagnosed with the disease – I remember the almost
overwhelming helplessness and hopelessness when I first recognized the symptoms.
Maybe my story will encourage caution to those who are faced with the myriad
choice of treatments – my natural skepticism helped me avoid much un-necessary
suffering and expense. Finally, my story is told to give something back to this
most helpful website: a catalog of information that helped me to begin to
understand the disease, and learn from the experiences of others who have lived
with ITP.
It began in late May, 2003. I awoke in the middle of the night and became aware
of several raised lumps on the inside of my mouth. Looking in the mirror, I saw
a dime-sized blood blister on the inside of one of my cheeks, and two smaller
ones on the top of my tongue; my gums were oozing blood. That was also the first
time I noticed the bruises on my chest and leg. Since I had been diagnosed with
ITP in childhood (I was 13 at the time; I’m now 55; I’ve had no symptoms since
childhood), I recognized that these might be symptoms of that disease. A blood
test at the Medical Department at my place of work revealed the unwelcome
confirmation: my platelet count was 8K; the other blood counts were all normal.
Self-examination found no liver or spleen enlargement.
I checked a number of websites for information on ITP – all the symptoms pointed
to this disease. Since I had lived through the disease in childhood – although
the symptoms were less severe – and the latest literature confirmed that the
disease is generally not life threatening for an otherwise healthy person, I
chose to adjust my activities to protect against trauma and to provide a low
stress “healing” environment without medical care. My research had already found
that the primary treatment for ITP had changed little since the late 1950’s, and
these drugs and other second-line medications can produce toxic side effects
(the PD website was extremely helpful in alerting me to these side effects.)
Sometimes environmental factors can trigger ITP – I resolved to search for them.
Further, while spontaneous remissions in adult ITP are rare, they can occur in
5% to 10% of patients – I was “up” for the gamble.
For the next two days, symptoms expanded to include: petechiae on both legs, as
well as a few on the arms and face; several additional blood blisters
(hemorrhagic bullae) on the inside of my mouth; feelings of weakness and mild
nausea; and some knee joint pain. On the third day, all symptoms began to
quickly resolve. I began to resume normal activities, but with some moderation
of intensity. Three weeks after the initial symptoms, another blood test showed
that my platelet count had risen to 53K. Except for an ongoing malaise, I
thought the worst of the disease was over. That belief began to change less than
a month later.
In early July, I awoke with two blood blisters, one on the inside of my cheek
and one on the tip of the tongue. By mid-month, petechiae had returned to both
ankles, large bruising was present on an elbow and a thigh, blue/black streaking
was noticed near the front of the tongue, some bleeding of the gums was noted,
and a general “un-well feeling” had set in. When I nicked my ear while trimming
hair, nearly an hour of attention was needed to stop the bleeding; several hours
later while sleeping, bleeding resumed, staining the pillow. Even though I was
spending a lot of time resting and avoiding strenuous activity, conditions
worsened.
Toward the end of July, I called a hematologist/oncologist for an appointment to
confirm the diagnosis. Based upon my prior blood work and a physical exam, the
doctor confirmed the ITP diagnosis. He ordered extensive additional blood work:
the platelet count came back at 2K, MPV (mean platelet volume) was 3.9, and
other blood factors were normal. The doctor prescribed daily doses of 80 mg of
prednisone; I delayed, still seeking a cause and cure of the disease rather than
just treating symptoms. Further, I was concerned that I had either a primary or
a secondary bacterial infection that was causing the tiredness and malaise
(these are not ITP symptoms) - the prednisone could suppress the immune system,
allowing the infection to flourish. Certain infectious diseases – Helicobacter
pylori (H-pylori) and Ehrlichiosis, for example – can also produce ITP-like
symptoms. I requested an antibiotic; the doctor refused, but promised to test
for H-pylori at my next visit. He strongly urged I start the prednisone: “It’s a
matter of life or death”. In sickness, I began the prescribed medication.
Blood work at my next doctor’s appointment a week later, showed no improvement
in the platelet count. The doctor immediately prescribed hospital outpatient
administration of Winrho, 7500 IU. Three days later, my count was 94K – symptoms
were resolving. A week after the good news, the platelet count was back down to
5K; other blood factors including red and white cell counts were now also below
normal (the H-pylori test was negative). For the first time, the doctor stated I
had Evans Syndrome, an autoimmune disease attacking both the platelets and the
red blood cells. He stated I was a candidate for chemotherapy and splenectomy;
he wanted to immediately admit me into the hospital – I refused. Instead, he
prescribed another 7500 IU of Winrho; I later cancelled the appointment for the
injection.
Over the next week, after the news that the Winrho treatment was short-lived, I
experienced an increasingly focused “congestion” in my chest in addition to all
the ITP symptoms. By the time of my next appointment at the beginning of August,
my blood pressure had risen to 138/90 – way out-of-line for me. The blood count
remained at 5K. Again, the doctor strongly recommended hospitalization and
aggressive drug “therapy” including IVIg, Winrho, prednisilone, and a cocktail
of third-line medications (Vincristine, Danazol & Imuran). By then I had
received the hospital bill for the 1st Winrho injection (K$19.2), was set
against an experimental “cure” using toxic drugs, and was convinced of a
bacterial component to the “congestion” and malaise I was feeling; I refused
hospitalization. In a compromise, he agreed to prescribe an antibiotic of my
choice (doxycycline, 100 mg, bid) with the understanding that I would consider
his treatment if my condition did not improve. Almost immediately after starting
the antibiotic, the “congestion” subsided and I began feeling markedly improved;
the ITP symptoms continued, however.
By this time, I had concluded that the medical approach to this disease was a
guessing game in which a variety of powerful (and toxic) drugs would be used to
raise the platelet levels; there would not, however, be any attempt to identify
and eliminate the cause of the disease. It reminded me of the stereotypical
witch doctor, cloaked in mystery, speaking unknowable incantations, blending
unfamiliar herbs and potions…to give to his “victim.” (I learned from my
brother-in-law, who lived in Africa for 10-years, that the witch doctors there
are really very good at their trade. Apparently, if a patient becomes more sick,
or dies, the community forces the “healer” to take his own medicine - the bad
ones don’t last very long.) Without my doctor’s approval, I began to
aggressively reduce the prednisone dosage; by early August, I was completely off
this, and all other drugs.
Instead of seeking a medicinal cure, I was now committed to finding
alternatives. After extensive on-line research, I began to notice a thread of
evidence that nutrition played a significant role in the health of the body’s
“healing system.” While intuitively I had resumed taking 1000 mg vitamin C
around the middle of July (a habit discontinued 6 months earlier), it wasn’t
until the end of August, extending into mid-September, that I had significantly
altered my diet. While the dietary changes were introduced gradually as I
learned more about the subject, the final result was revolutionary: anti-oxidant
vitamins A (as beta-carotene), C, E, and the mineral selenium; vitamin B
complex; the detoxifying herb milk thistle; flax seed (as a source of omega-3
fatty acid); reduced protein intake with no meat except skinless chicken breast
and fish; no oils, butter or other fats except extra-virgin olive oil; no
processed foods; plenty of fruits, vegetables (even began juicing raw
vegetables) and coarse grains; no coffee – green tea instead.
Through the month of August, I continued taking the antibiotic for twenty-one
days – the recommended duration to treat one of the possible infectious agents
associated with thrombocytopenia, Ehrlichia. During this period and the period
immediately afterward, many of the ITP symptoms seemed to worsen. Some of the
most pronounced petechiae outbreaks on the legs, pelvic region and even on the
face occurred. Blood blisters inside the mouth and red or dark streaking of the
tongue were common. Occasional bruises were large and vivid; toward the end of
this period, calf and leg muscles ached. By the second week in September, I
started to feel that the illness was turning around. Over the next two weeks,
all the symptoms fully resolved.
My next doctor’s appointment on September 25, confirmed the good news: platelets
– 90K, MPV – normal, red and white blood cells – normal. The doctor was
incredulous; he had the blood sample retested. “What did you do?” he asked. I
explained that we had discussed the approach: an antibiotic and nutritional
changes. A book I had recently completed reading was mentioned that succinctly
captured this approach: Spontaneous Healing by Dr. Andrew Weil. While my doctor
had heard of the author, he confessed what I fully expected: he would not read
the book.
It’s been more than two weeks since I’ve been symptom free. My energy levels and
strength have returned to near normal. I’ll be going back for follow-up blood
work toward the end of November. I have no doubt that the blood count numbers
will remain normal.
If the unexpected does occur and I relapse, there are other healing aids that
would be interesting to explore further. In addition to the nutritional changes
and vitamin supplements, controlled fasting, colonics, other herbal tonics, and
visualization and other alternative therapies are available to enhance the
healing process. Even certain herbal blends prescribed in traditional Chinese
medicine (TCM) would be considered, but only if the other approaches failed.
This experience has been life changing for me. I now realize that while
appearing healthy to others, and even to myself, I had been mistreating my body
with the food I was eating, and by other environmental and emotion-created
toxins. The nutritional changes made will continue (although with less rigidity
as my health sustains.) I plan to stay ahead of another physical crisis.
Perhaps most importantly, I’ve learned that modern medicine, while indicated for
broken bones, other severe trauma, massive bacterial infections, vaccines, and
some other serious acute conditions; for autoimmune and other chronic diseases,
viral diseases, and most other health issues, the body’s own healing system is
perfectly devised to manage the task – it sometimes just needs a rest from what
can be an overwhelming task.
Warren (
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