Lynette's appointment with Dr. J last week went well. She had a successful trial of the IV Azithromycin at Jemsek Specialty Clinic (JSC). It's only once per day, but it takes an hour to dose. Dr. Jemsek was pleased with Lynette's progress. He did a simple motor skill/coordination test that confirmed her improvement. We didn't expect many changes in Lynette's protocol prior to the visit. But we left with 4 new prescriptions and recommendation for another probiotic.
Minocycline is an antibiotic that Lynette has been taking since the beginning of March. It was originally prescribed to her by Dr. Fishman in Maryland. This drug has other beneficial properties that may reduce inflammation. Mycobutin is an antibiotic that has similar properties. Dr. J switched Lynette off of the Minocycline and onto the Mycobutin.
Another new prescription that Dr. J wrote was for Deplin. Deplin is a source of folate, a substance similar to folic acid, which is necessary for a multitude of molecular/biological processes in the body. This substance is crucial in the building of new cells.
One of Lynette's most aggravating symptoms right now is a tightness across her abdomen. She describes it as feeling like she is wearing a very tight corset. It flairs up when she exerts herself. Exertion for Lynette right now is walking up our treacherous driveway to the mail box. Dr. J wrote Lynette a prescription for Lyrica. It's a drug that you see advertised on TV to treat the symptoms of Fibromyalgia. Dr. J said he was prescribing the lowest dosage available. In fact our pharmacy had to order more. Lynette doesn't feel that this medicine is helping her.
There are some 5 trillion living organisms in our body. The majority of these are beneficial bacteria that live in our digestive system. These organisms aid with digestion and control the growth of undesirable organisms. Antibiotics kill beneficial organisisms in our body. Taking antibiotics upsets the mix of all these beneficial bugs in your gut.
Lynette has been taking antibiotics since the end of January. Since the middle of June she has been receiving IV antibiotics 2 out of every 3 weeks, 3 days a week, twice a day. Along with the antibiotics, Lynette has been on a constant regimen of probitics. Probiotics are live organisms meant to replace those that are compromised by the antibiotics. It's impossible to replace the specific mix of cultures that are killed by the antibiotics so there are bound to be affects on your GI tract. Lynette's symptoms have been no worse than loose bowels, but there is nothing pleasant about that. Dr. Jemsek prescribed Lynette Diflucan and recommended taking a probiotic with saccharomyces. Diflucan is an antifungal that is often prescribed to control yeast overgrowth. Saccharomycesis yeast. I don't get it, but Lynette reported today that she thought the probiotic was helping.
Dr. J asked about Anna when we were at JSC for Lynette's appointment. Anna is doing well. After we got home from our beach vacation, one of Anna's friends called her and invited her to return to the beach. Anna spent several days over an extended weekend with her friend Sierra, most of which was at Myrtle Beach. Anna got back from the beach on Monday and turned around left for Volleyball Camp in Salisbury, NC on Tuesday. She finished up VB camp today and is home now. We'll be taking her up to King, NC on Sunday to attend Camp Hanes for the week.
Some of Anna's friends tease her about all of the pills she has to take. I told Anna to remind her friends what shape Anna's mother was in back in February, and to tell them she's taking the pills to avoid being sick like that.
In Lyme disease treatment there are two schools of thought. One group, supported by the Infectious Diseases Society of America (IDSA), contends that Lyme disease is easily diagnosed, and easily treated. The IDSA says that all infections are cured with a 10 to 28 day course of antibiotics. They also dictate that there is no such thing as chronic Lyme disease and that any symptoms that remain or recur after treatment are unrelated to a resistant or recurrent Lyme infection. They contend that standard testing methods are accurate and adequate.
The other school of thought in treatment and diagnosis of Lyme disease is supported by International Lyme and Associated Disease Society (ILADS). ILADS believes that the standard testing methods are grossly insensitive. They believe Lyme patients should be treated according to their clinical response and not based on any rigid treatment duration.
The IDSA has authored Lyme disease treatment guidelines which are generally accepted by mainstream medical practitioners and insurance companies. This presents a major roadblock for Lyme disease sufferers seeking adequate treatment.
Connecticut Attorney General Richard Blumenthal filed an anti trust suit against the IDSA last year. He sited multiple conflicts of interest among the IDSA's guidelines authors. Guidelines authors were shown to have financial interests related to Lyme disease, including patents, interests in test kits and vaccines, and associations with insurance companies and universities with endowments from major medical corporations. The IDSA agreed to have their guidelines reviewed by an entirely new panel that did not have any known conflicts of interest in this area.
As part of the settlement, a hearing was held in Washington, DC yesterday by the IDSA to allow testimony in regards to the IDSA's Lyme guidelines. Presenters at the hearing included members of the IDSA and ILADS, as well as researchers, practitioners, patients and advocates. From what content of the hearings that I was able to see, I thought that most presenters made valid arguments for their side. There were 4 or 5 presenters who I was familiar with because of our journey through this disease. Most of the information presented conformed to my understanding of the various issues regarding treatment and diagnosis of Lyme disease.
Many years ago the IDSA was the only authority on Lyme disease so they got in the door first. They drew sweeping conclusions about Lyme disease before there was enough evidence to do so. In 1982 our government made it much easier for scientists, practitioners and businessmen to profit from the discovery of new biological entities. Patents could now be issued for the discovery of a new bacteria, disease pathway or antigen. Lyme disease researchers gobbled up all the intellectual property they could grab. Very early in the game, in order to solidify their position in the treatment and diagnosis of Lyme disease the IDSA drew a line in the sand. With the publication of their guidelines they committed too early and found themselves in a position where they could not relent and still save face.
If Lyme treatment guidelines were to be relaxed it would cost insurance companies money. Insurance companies control health care costs by dictating which treatments and diagnostic procedures they will cover. They also have very robust lobbying representation at all levels of legislation. My local NC Representative told me that you can't go after the insurance companies because their lobby is too strong. The insurance companies have nothing to gain by conforming to relaxed standards regarding diagnoses and treatment of Lyme.
The truth will eventually come out. The current attitudes about Lyme disease are not too different from public opinion of early HIV. The general population thought that HIV was not a problem because it did not affect them. Then gay friends started dying. Then there were friends who weren't gay that were dying. The government paid attention and kicked up funding for research into treatment and diagnosis of HIV. I think that Lyme disease is approaching the stage where it will get much more recognition.
Tick populations are increasing. Incidence of tick borne illness is spreading like osmosis from areas of higher concentration to areas of lower concentration. Eventually there will be enough people infected that there will be public outrage and our government will realize the impending crisis of tick borne illnesses.
There's very little that we as individuals can do to support this fight. The press and our legislators are just about all we have. We can only hope for the best and be prepared for the worst.
Tuesday, July 21, 2009
If you Google "Lyme Disease Symptoms" you get 35,800 results. Dr. Joseph Burrascano lists 63 separate symptoms of Lyme disease in his Advanced Topics in Lyme Disease -- Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses.
The symptoms vary so wildly that they describe conditions that millions of people suffer from. So many of these symptoms are general like fatigue, headache, fevers, joint pain. When you are familiar with the symptoms associated with Lyme disease, it seems like everyone could have the disease.
A friend has a swollen knee with unexplained stiffness. A coworkers spouse has numbness and tingling in their hands and feet. Your friends mom has a multiple sclerosis diagnosis at 55 years old. Somebody on a news broadcast has Bell's Palsy. Lynette and I look at each other and say in unison, "Lyme disease!"
Our population suffers from an astounding array of chronic diseases. There are very few of these diseases for which there is a known cause. No causative agent has been identified for ailments such as Chronic Fatigue Syndrome, Fibromalgia, Rheumatoid Arthritis, Amyotrophic Lateral Sclerosis, Alzheimer's Disease, Multiple Chemical Sensitivities, Lupus, or Multiple Sclerosis. These are all common misdiagnoses for Lyme disease sufferers.
Dr. Alan MacDonald, a respected Lyme researcher and pathologist in New York state received brain tissue from 10 deceased victims of Alzheimer's disease. He found the spirochetes that cause Lyme disease in 7 out of the 10 specimens.
The CDC admits that their reporting of Lyme disease is likely understated by 90 percent. Is it possible that all of these people with CFS, FM, RA, ALS, AD, MCS and MS are infected with borrelia burgdorferi?
I don't think so.
I do think it is possible that some of them are infected with Lyme disease. I also think it's impossible that all of them have Lyme disease. But if you consider how adept this disease is at evading the immune system and how hard it is to detect with standard testing, is it so unlikely that there are other unidentified or hard to detect pathogens that are the cause of illnesses for which no actual cause has been identified?
Sorry it's been so long since I've posted. We have just returned from enjoying a week at the beach with Lynette's family. We had a great time and Lynette held up pretty well. The heat got to her on a couple of days. She figured out early in the week that an afternoon nap was beneficial. The week was a drug holiday for her so she wasn't subjected to twice daily infusions 3 times a week. We did infuse a couple of liters of lactated ringers to keep her hydrated.
Lynette's brother Tim and his wife Jonna were a major part of our life support system when Lynette was in really bad shape. They were a big part of helping Lynette get back on her feet. A few days before the beach trip Jonna became very ill. She is doing much better now, but Tim and Jonna were unable to join us for the beach trip. It was a huge disappointment for the whole family. How strange is it that Tim and Jonna were there to help Lynette when we needed them and then they had to miss out on the trip?
I made it through my 4th PICC dressing change tonight. I messed up once and had to redo my gloves. I still find the whole process rather nerve wracking. But I want to be careful because I don't want to be responsible for giving my wife an infection.
We are headed back to see Dr. Jemsek tomorrow. Lynette has not had any IV antibiotics since the July 10th. We have heard about Dr. J's protocol from enough of his patients and the nurses at the clinic and figure that Lynette will start IV Zythromicin tomorrow. She likely will be discontinuing the IV Merren. We'll see what else they have in store for us.
Anna is doing well. Although her symptoms have been milder than Lynette's, I see improvements from the symptoms that she has had. Anna is heading back to the beach this weekend with a friend. She'll be going to Volleyball camp the next week. Soon after that she'll be spending a week at Camp Hanes. Most of the time she is a ball of energy bouncing around the house.