My Medications

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My daily medications may seem like a mundane subject, but I'll mention the why and how of them. Additionally, I'll mention those I've tried, their results, and why I'm not taking them now.

TODAY'S DAILY:

Oxycontin (Brand, not generic) 80mg twice a day. This is an opiate, highly addictive pain medication determined by multiple doctors of various specialties to be vital for my quality of life because of severe pain. In my career, I have hurt my back many times. I must have thought I was Superwoman but in reality, the culture in the ICU's encouraged nurses to not ask for assistance when lifting and turning patients. Also, I've had two major falls in the past 5 years. The worst one broke my ischial spines (the pointy bits at the bottom of your pelvic bones on which we sit underneath our fat padding) and fractured the vertebra at the level of L5-S1 (the 5th lumbar vertebra and 1st sacral section which are located at the waist area). As you can imagine with those breaks, I sat down hard. I was unaware that virtually minor surgery could have placed a gel-like substance in that vertebral space to correct the fracture until it was too late to do it. So I'm left with what's called a compressed fracture of L5-S1 and it has caused sciatica down both legs. So that's why I've needed narcotics after having gone though every over-the-counter (causing a total of 5 gastric bleeds since 1985) and non-narcotic med available before ending up with this brand medication at this dosage. Just an anecdotal comment: my drugstore "accidentally" filled my monthly dose with the brand instead of the generic Oxycontin and for the first time, I didn't need any "break-through" medications.

MSIR 30 mgs up to three times a day as needed. This is the drug I no longer need on an usual day, However, I'm finally realizing that when I do need to take these, my Lyme has relapsed, as was the case just recently.

Lyrica 50mg twice a day as needed. I seldom take any. At one time, I needed 150mg added to my nighttime "cocktail" (more later) just to fall asleep.

Remeron (mirtazpine) 30mg Sol-Tab at bedtime. This is a SSRI (an antidepressant drug that acts by blocking the reuptake of serotonin so that more serotonin is available to act on receptors in the brain). This low serotonin has been proven to be a problem for us.

Restoril (temazepam) 15mg at bedtime.

Not too long ago, I needed 30 mg Restoril (twice as much), Lyrica 150mg (three times as much), and the Remeron to become drowsy enough to fall asleep. Just by changing the generic Oxycontin to the brand has allowed me to drastically lower the dosages of the Restoril and Lyrica over a period of two months.

Biaxin 500mg twice a day for my Lyme relapse. I've tried higher doses but have not seen any appreciable difference.

Crestor 20mg daily. For my high cholesterol, it has been the only one that has worked (and like almost everything, I've tried them all). I notice that our LLMDs suggest our high levels is yet another Lyme symptom.

Lasix 160mg daily as needed. As I've mentioned in other posts, I no longer have to depend on this for my pedal edema (feet & finger swelling) since I've restarted the Biaxin.

K-lor 20mEq twice daily. I take it when I take Lasix to replace the potassium it loses.

HAVE TAKEN:

This list is sooo long, I'll only mention a few.

Vitamin D3 1000IU, five times daily
While relatively inexpensive, I believe that having a Vitamin D deficiency when one lives closer to the Equator and walks one's dogs for about an hour a day is sheer BS. I've taken this vitamin just as the Vitamin D3 docs have advised for about 8 weeks and have "felt" nothing. And since I'm in the 4th month of a Lyme relapse, this vitamin has made no changes in my immune system's struggle.

Immunoglobulin IV(IVIg):

Because testing proved that I had immunodeficiencies of IgA, IgG, and IgM, in 1998 my CFS guru ordered ten doses, which came out of my pocket primarily. Since this meant that my immune system was decreased in its ability to ward off the chronic relapsing Herpes infections and even normal bacteria that we encounter daily. In order to strengthen my immune system, IVIg was prescribed.(caution medical jargon ahead)
Antibodies (also known as immunoglobulins, abbreviated Ig) are gamma globulin proteins that are found in blood or other bodily fluids of vertebrates, and are used by the immune system to identify and neutralize foreign objects, such as bacteria and viruses.
IVIG contains cytokines, antibodies which have been found to be elevated in us and giving it is of unclear clinical significance, perhaps neutralizing; interestingly, antibodies against granulocyte macrophage colony-stimulating factor, interferon, interleukin 1, and interleukin 6 in immune globulin have biologic activity in vivo.4 IVIG contains natural antibodies, accounting for some of its effects.
I'm sure that I still have these immunodeficiencies and I would be asking for these IVs now but (Rumor) apparently the government has kept it off the open market since 9/11/2001. Last I heard, it's still restricted to individuals with severe immunodeficiencies (and I probably would not qualify). I could "feel" some improvement with these IVs and was worth the effort back then.

Deplin (l-methylfolate) 7.5mg daily. Deplin is used together with anti-depressant medications in people with major depressive disorder and low folate levels. I've found this to be virtually worthless but very expensive. I don't deny that I've had symptoms of a major depressive disorder, but this wasn't the magic bullet!

Ambien, Lunesta, Melatonin...worthless for me because the cause of my not getting restorative sleep was that my pain wasn't under control.

Every oral antibiotic available (except penicillin) both before and after the Lyme diagnosis in 2000. Pre-Biaxin, the only antibiotic that provided some lessening of my arthritis was Ceftin but my stomach didn't like it much so I would always quit by the fourth or fifth day. Years ago, Cipro always left me feeling better but I've not been able to obtain a new script for it thanks to our wars.

WHAT I WISH I WERE ON

Cytovene (gancyclovir) 1,500mg daily. With my systemic HSV (Herpes Simplex), chronic relapsing EBV (Epstein-Barr), and chronic relapsing HHV-6, an antiviral is absolutely necessary to give my immune system a fighting chance. I've tried over-the-counter meds as well as long-term trials of acyclovir, Valtrex (valacyclovir), Famvir (famicyclovir), and finally Cytovene before any change was felt or testing proved its efficacy. For the first time in literally years, I felt well! I'd be on it now except it's no longer available. Medco, always trying to be helpful, has told me that if I can find some Pharmacy to supply it, they will forgo my co-pay! However, I can't find it! (How far-fetched it is to wonder whether this drug's inavailability could, like the others, be secondary to our wars?)

SLEEP MEDICATIONS AND PAIN MEDICATIONS

Over the years, I have stressed that no sleep medication is going to be worth it if one has uncontrolled pain. I didn't realize how my pain had effected me until it was gone! Please venture into interviewing pain doctors to find the one who understands your pain. Additionally, stay away from those who believe that you only need more exercise to cure you of your CFS, FM, Lupus, CWS, and/or Lyme Disease. There is now peer-reviewed research which backs up our anecdotal results that has proven that exercise is detrimental to us.

SUPPLEMENTS (Caution: Bankruptcy ahead)

I've taken every one you could think of, but I stick with amino acids, vitamins and minerals, especially COQ-10 200mg daily (for my brain & fatigue), B-Complex and/or individual B vitamins including sq B-12 (it only depends on how I feel and what I have on hand). I have Omega-3 (can vouch for better nails, skin, and hair) and Magnesium tabs (eliminates muscle cramps for me) on hand also.

I mention bankruptcy because in '97 to 2000, in my desire to get well, I became the darling of GNC and Vitamin World, spending ~$1,500 monthly on just supplements and protein shakes (since I was too sick to prepare meals! Because they seemed to help me, I continued on with this plus paying out-of-pocket for other prescribed drugs and treatments - right into bankruptcy. Please don't follow my path.

HOW ABOUT YOUR LIST??

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