Saturday, March 7, 2009

Lynette Update 2-13-2009

Some of you may not know that Lynette is sick. Others of you may not have heard anything lately. It's been a trying time for all of us and it is hard to keep everybody up on the latest. Hopefully this blog entry will fill in some holes. I know there are a lot of you out there who care about Lynette.

Lynette's symptoms slowly but steadily progressed from about the beginning of October until around the end of January. Her main complaints were numbness and tingling on the right side of her body along with loss of appetite and weight loss.

Although she has seen her family doctor and a neurologist she is not satisfied with their diagnosis which is they say is "consistent with multiple sclerosis". Lynette has done a lot of research in regards to her condition and at this point is pretty much convinced that she has Lyme disease.

She saw her gynecologist some time last month for something totally unrelated. All came out fine from that visit. She shared her story with her gynecologist who asked her if anybody had prescribed her doxycycline, a common Lyme effective antibiotic. As soon as she started taking the medicine her symptoms rapidly increased. She took the doxycycline for 3 days before she decided to have her blood sent out to a lab in California that does the most comprehensive Lyme testing available. After a week off the medicine she had her blood drawn and sent to California. She resumed taking the antibiotics and her condition continued to deteriorate. She has now taken about 10 days worth of antibiotics and her condition seems to have leveled off over the past few days.

It turns out that increase in symptom severity is a normal reaction for Lyme sufferers who are taking antibiotics. The condition is called the Jarisch-Herxheimer reaction. The living bacteria in your body are releasing chemicals in your body that cause damage and invoke damaging responses from your immune system. As you kill these organisms the amount of toxins released is increased. To me, this is a strong indication that it is in fact Lyme disease that Lynette is suffering from.

At this point her right leg is basically paralyzed. She has limited use of her right arm, to the point where she can't write well or use a computer mouse. She can't drive. She is using a walker and wheel chair to get around the house. She has been working some from home but she hasn't been in the office for the last 2 weeks. We are installing a stairlift elavator this weekend to help her get up and down the steps.

Now here is the good news. Through my awesome mother-in-law's persistence, she has gotten Lynette an appointment with a Lyme specialist in Rockville, MD on Monday 2/16. There is a great interview of Dr. Norton Fishman available on the internet:

(copy the link and paste it into your browser)

Based on this interview I have a lot of confidence in Dr. Fishman. The interview is kind of long, but it gives you a good idea of the struggle that Lyme patience face.

Many that are unfamiliar with Lyme disease are not aware of the controversy and conflict in the medical community. The "standard" medical community employs testing that is neither complete nor comprehensive. Insurance companies only pay for certain tests, won't approve referrals to specialists without a positive test, limit the duration of anti-biotic treatments even when it is clear that more treatment is necessary. Even the CDC says that a person with a negative Lyme test may still have Lyme disease and the diagnosis must be of clinical nature rather than a laboratory diagnosis.

What this means for Lyme sufferers is lots of run around, Dr.'s telling them its all in there head, or they have MS, fibromyalgia, lupus, etc. It also means that you have to have some money to get treatment because the insurance companies don't think you are sick so they won't cover you.

Beverly has been in touch with the Dr. Fishman's wife and Mrs. Fishman has indicated that Lynette will be treated as soon as they can consult with her and observer her condition. This most likely means that Lynette will have a picc line installed and have a couple of months of IV antibiotic treatment followed by year of oral antibiotics.

Many people suffer from this disease for years and years before receiving a proper diagnosis. While Lynette's symptoms seem rather severe, the fact that she will begin treatment soon offers the prospect of a full recovery.

The most amazing thing about this is Lynette's attitude. Of course she gets down and depressed, but for the most part she is the same old Lynette, cheery and smiling. You wouldn't want to be around me if I was the sick one.

Lynette is rather self conscious about her condition and does not want a lot of attention. We have had lots of offers of assistance from many of our friends and family. We really appreciate all of this.

Please keep Lynette in your thoughts.

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