|NEURONTIN AND BRAIN
By Gail Kansky and Mike Reynolds
Dr. Jay W. Seastrunk is a psychiatrist who has worked with brain injuries for the past 30 years. With a practice in Duncansville, Texas, and a satellite office in Dana Point, California, Dr. Seastrunk has been treating all types of focal brain injuries he believes he's found in patients with CFIDS and multiple chemical sensitivity diseases.
Dr. Seastrunk believes that people who have experienced brain injuries, including PWCs, can be helped by Neurontin (gabapentin). The drug, originally developed by the Japanese, helps stabilize injured brain cells and helps to stop them from misfiring. Neurontin is a synthetic amino acid that is similar to L-Lucine but does not work the same as L-Lucine or GABA. However, because its molecular structure is so much alike, it uses the same transport system as L-Lucine to absorb the drug into the blood and then the brain.
Dr. Seastrunk finds the majority of his patients have a history of head trauma, but focal brain injuries can also be inherited. Brain focal injuries can be caused by toxic conditions as well as infections, high fevers, and illnesses such as MS and ALS. Various tests are used that can include Magnetic Resonance Imaging (MRI), that are usually normal. Functional MRIs are used to measure blood flow and a Magnetic Resonance Spectroscopy (MRS) identifies chemicals in the brain. This last test is one that, by combining it with special computer software, shows chemicals such as lactate that is elevated when one has an immune dysfunction. N-acetyl-apart (NAA) is a marker that shows the presence of neurons. In CFIDS, the left frontal lobe is usually the more severely affected, although sometimes there are nerve endings from the left frontal lobe that cross over to the right frontal lobe.
In MCS, combined with CFIDS, a liver spectroscopy can show an increase in glutamine, a toxic by-product. The creatine is often markedly abnormal. Dr. Seastrunk has a questionnaire that he calls an organic evaluator that, when answered by PWCs, shows a 95% rate of demonstrable brain pathology. The left frontal lobe is responsible for retrieving and restoring memories, understanding, and word finding while the right frontal lobe has cognitive dysfunctions that include mood swings and sleep abnormalities. Kindling is a process that happens when exposure to small amounts of a chemical or a toxic exposure causes the brain injury to fire. Dr. Seastrunk believes that chemicals trigger the nasal nerve cells that go to the brain and begin this firing process. He does not believe that detoxification will help since the chemicals are not actually in the brain. Women outnumber men with these illnesses because they are more sensitive to smells and that can trigger a focal brain injury. Both stress and sleep deprivation activate a focal brain injury. Thus, Dr. Seastrunk believes that you don't have to treat the immune system if the brain is treated. The brain will correct the immune abnormalities once treated correctly.
Parke-Davis, the company that purchased gabapentin, has seen dosages that range from 3,000 to 6,000 mg per day while, even at 10,000, the drug is not toxic. Dr. Seastrunk has never found anyone to be allergic to Neurontin in the hundreds of patients he has treated. It does not cross-react with other medications. Magnesium, however, will block Neurontin.
Neurontin is taken "in as evenly spaced intervals as possible. It is not wise...to take it only in the a.m. and then repeat in the p.m.," says Dr. Seastrunk. Side effects will occur when people first take the drug but usually pass aAer two to four weeks. However, we have heard from PWCs who claim they have side effects after being on the medication for months. One side-effect seen initially, is feeling drunk, while another is feeling excessively irritable. Some have felt their balance affected after being on the drug long-term and one PWC broke a hip while on the drug one year and, the next year, broke an ankle. Dr. Seastrunk tries to move the dose up to 3200 mg as quickly as possible, beginning at 100 to 400 mg dosages. At 3200 mg, he checks the blood level to see how much the blood is absorbing. While there are no therapeutic levels established for Neurontin, he looks for blood levels to be S to 18. Usually, benefits will increase up to 3200 mg and then level off. If one increases the dose too fast or is taking too much, he or she will feel drunk. Doses are often increased every two to three days, and two years is often the time taken for a full effect.
Migraines can sometimes occur with Neurontin. Increasing the dose can sometimes stop them. If not, Depakote (1,500 to 2,000 mg/day) or Parlodel (2.5 mg before meals) is prescribed. Dr. Seastrunk feels that a significant number of his patients show improvement but are still sick because they have something that is continuing to injure their brains. Often, this turns out to be Mycoplasma incognitus fermentens or Chlamydia pneumonia. About 15-20% of his PWCs have returned to normal health while the rest show a significant improvement, he claims. Some of these patients were bed-bound for years.
Brain injuries are also treated with SSRIs (ser-atonin reuptake inhibitors) such as EfTexor or Zoloft. Klonopin can help but can be habit-form-ing. Dr. Seastrunk says, "The antidepressant Effexor is often added ...for those who tolerate it, Effexor can be a tremendous boost toward healing."
Neurontin is expensive, at about $400.00 monthly. If you have no drug card or state insurance and earn less than $16,000 annually as an individual, the company will provide you with any amount of Neurontin for just $3.00 monthly. If you have no insurance but make more than $16,000, the company will charge $45.00 monthly.
Weight gain is often found by patients taking Neurontin. Dr. Seastrunk says this "is usually due to fluid retention or increased absorption of food and may be treated accordingly." Sometimes a PWCs initial reaction is to develop all their early symptoms in the first week. Dr. Seastrunk usually hospitalizes patients when he first begins the drug therapy. Those beginning the antibiotic therapy for additional microbes in combinations are advised to go very slowly. The antimicrobial therapy can take a few years. All these treatments are still considered experimental. Patients reactions vary from feeling initially drunk to being incredibly irritable. Yet some have claimed they have had no side effects at all.
Three groups of patients have been found:
2) 60-70% respond but take longer
3) 5% do not respond at all, while 5-10% won't comply with the regimen
If you are not sure you have a Focal Point Injury, members may send a SASE for a copy of Dr. Seastrunk's questionnaire, called "The Organic Evaluator." Requests should be addressed to the National CFIDS Foundation, 103 Aletha Rd., Needham, MA 02492. Neurontin is one of the drugs mentioned in Dr. Jay Goldstein's Treatment Protocol for Physicians, which is also available under the materials column.
Dr. Seastrunk has become very interested in Chlamydia pneumoniae and Mycoplasma fermen-tans (incognitus) and, during a lecture, said, "We see a certain portion of people who have this illness and focal brain dysfunction and they get better, but they continue to have sickness...we begin to look at Mycoplasma incognitus and Chlamydia pneumonia. Chlamydia pneumonia ...could be an explanation of the vascular problems that we see on MRI...they've got these things that look like MS that are vascular...it suggests that there's something actively ongoing that may be infectious that's continuing to injure the brain, and we need to kill that organism to stop the continuing injury."
(Sources for this article was material provided by the office of Dr. Jay Seastrunk and personal communication with PWCs.)
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606