Lynda’s Story

Lynda’s Medical History

41 Years ago I was told that my WBC was 1500. Today I am 65 and my counts range from 4.4 to 2.1.

I was five months pregnant with my second child when I was told that my WBC was at 1500 At this time I had my first bone marrow test done to determine if my bone marrow produced the proper number of white cells which,  it did. I was told that more than likely my count would return to normal after I gave birth. It did go up to around 4700 and stayed for a number of years before it began to drop again.

(When I was pregnant with my first child I was sick almost my entire pregnancy. Two days before I delivered him I saw a doctor that cared and said that nothing was consistent my whole pregnancy. Not sure what that meant, as we were in the Army at the time and I didn’t get my med. Records.)

The first doctor that I saw was a Dr. Fine, and then I saw a Dr. Goldfarb followed by Dr. Suresh Katakkar

I have also seen Dr. Richard Rosenberg and Dr. Michael Boxer, with AZ Oncology.

In January 2014 I began seeing Dr. Debra Wong, under Dr. Northfelt, at Mayo Clinic in Scottsdale; my hope was that I would get a doctor that specialized in Neutropenia. I was told that they don’t have any MD’s that specialize in Neutropenia.  Dr. Wong diagnosed me with Benign Idiopathic Neutropenia.  She had me going for CBC twice a week for several weeks. My count would range between 5.2 to 3.1. I have been as low as 2.1 at times.   These counts would be after taking 300 mcgs of Neupogen every other day for the 5 day span.   I no longer see Dr. Wong as her fellowship expired and I felt that I wasn’t being treating any different than any other Hematologist had treated me.

While under Dr. Katakkar’s care I was tested for many diseases and the test came back normal

I had blood work done and then went out and walked for twenty minutes and back in for more blood work to make sure my spleen was working and it was as my count would be higher

Dr. Katakkar, did a second bone marrow test about 18 years ago and it showed that my bone marrow was making the proper number of white cells.

About 7 years ago I saw a Dr. Linda Carl, a Rheumatologist and she was sure that I had Lupus or an arthritis and was amazed when I didn’t

When I was 6 years old I had all of the child hood diseases that year and it took me awhile to get over them, but over all I was healthy the rest of my childhood. Just a cold now and then.

I have tried Naturopaths also to find out what is happening to my Neutrophils and No one seems to be able to find that out.  I have been test for allergies to grains, and was told that I am allergic to most grains.  Wheat, corn, rye, barley, sugar, soy and coffee.  Soy is my worst. Try to find items without soy, good luck. So I mostly eat proteins, veggies, fruits and nuts. Very little gluten or even grains free items.  I eat very healthy and it makes a huge difference in my life.

I feel much better when I don’t eat any of them. They make me very lethargic, and I began to itch within 15 minutes of consuming them.

Thirteen years ago I started taking Juice Plus and eating as much organic products and grass feed beef that I could afford, and find.   I no longer get sick 5 – 6 months out of the year.

I have gone for regular lymphatic work and my legs will feel and look much better, and today I do a daily dry brushing which really help move the lymphatic fluids out of my body.  It has made a big difference in the fluid retention.

I have also worked with an acupuncturist; she helped with my energy level

I have been looking for answers for years and have not been able to find anyone that can give me any. Dr. Wong probably has given me more answers than anyone. I feel like I am not being treated for Neutropenia correctly, and more like a cancer patient.

I am so thankful that my lymphatic specialist suggested that I look into the NIH website to see what I could find about Neutropenia. I was elated to find NNN. Which lead me to the Severe Chronic Neutropenia International Registry.

I would love to finally meet a doctor that can give me answers and treat my Neutropenia. .

I have had blood work done twice a week for months and that does show that I am cyclic and my Neutrophil count ranges from as high as 1.4 and as low as 0.1.

I can tell when I think my count is getting low as I will get mouth sores, and fell more fatigued .  I now take L Lysine daily for the mouth sores, so I rarely get sores in my mouth, but I will get a sore in my nose now and still get very tired.

The past few Januarys I have felt sick around the 11th of the month and it will last for several days.  I don’t know if this is when my count is at its lowest, since this is around the time that my count will drop, but I feel like it is. This does not happen every month.

Dr. Wong wanted me to do Neupogen injections every other day for three days around the 25th of the month in the hopes that it will raise my count enough so it won’t drop so low. This is all well and good if in fact my count drops within the next five days.  (I take 300 mcg)  Dr. Rosenberg wanted me to take 480 mcg) I told him I would not take 480 mcg as it makes me dizzy and I begin to itch all over with  this amount of Neupogen.

In March of 2015, during my visit with Janet Bruce, my Absolute Neutrophils count was at 0.5 she suggested that I have a Neupogen injection. I agreed to do the injection that evening, on March 10, and I insisted on having blood work done for the next few days to see just how long my count stayed up.

March 10, 2015   – 0.5    took a shot this evening.

March 11, 2015   – 1.8     day after shot

March 12, 2015   – 0.8    2 days after shot

March 13, 2015   – 0.6   3 days after shot

I was not surprised at the outcome.

I had been told by Dr. Katakkar that the Neupogen should only be used if I had a major illness and need a surgery. That the Neupogen would only affect my count for as long as I was taking it.   No one had ever done a study to see just how it did affect my counts.

The Neupogen makes me hurt all over, and I am exhausted. This last for at least a week during the time of the injections of 3, 300 mcg every other night for five nights.  I was told to take an allergy pill and extra strength Tylenol before the injections. This will help a little with the allergic reaction that I have to the Neupogen, and it does.

So if I am lucky I have two really good weeks out of the month and this is beginning to suck.  I have asked what the Neupogen at this dose is doing to my body and if it’s not over work my system.  I am told I DON”T THINK SO…  I have asked not to be treated as a Cancer Patient ( of which  I am very thankful I don’t have a Cancer)  but all the Hematologist I have seen don’t know how to treat Neutropenia.   The last 10 years have been very trying as I know that I am aging and as we age we are more susceptible to disease and infections.  Well this is very frightening, and I can’t find anyone that seems to care or can give me answers…

I found out through the network that I should be taking smaller amounts of the Neupogen, but without a doctor to instruct me with this I am not taking Neupogen on a regular schedule.  I will take it when I feel that I am in trouble, which I am sure is harming me more. I am very fortunate that I stay healthy.

I work very hard to stay healthy, so therefore I do. However you never know what is around the corner.

I am so thankful that I have found the NNN and fell that I can finally get the answers I have been looking for, for years. I am so looking forward to finally meeting with a doctor at the convention in Ann Arbor, in July.

Thank you for your time.

Lynda

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