Macrobid - a horrible experience
by Melody Cleary, OR, U.S.A.

I recently had a terrible reaction to the medication called Macrobid, an antibiotic prescribed by a gynecologist for a urinary tract infection. I have had antibiotics in the past for upper and lower respiratory infections, yeast infections and streptococcus infection, so I didn't object to being given something new and effective (Nitrofurantoin).

I didn't take the CMT article seriously because in the '89 article it indicated your illness would have to be serious to have one of those drugs prescribed. Not so. Mine was minor. I am suffering from numbness in the fingers, extreme weakness in the hands and arms and also in the legs and hips. It's so bad in my legs I can't drive my car without assisting my legs with my hands and arms. I used to use the 10 key easily; now I use one finger on my computer at work.

All exercising has been stopped because I'm afraid I'll stress my muscles. It's been almost a month since I was told to stop the medication after taking it for six days and there has been no improvement. My neurologist says the effects could last two to three months and doesn't know if it could be permanent.

I am annoyed with the doctor who prescribed this. I was seeking a new internist because my doctor always forgets I have a neurological disease. (How many patients does he have on crutches anyway?) Instead of digging in my chart to see what I've taken before, he prescribes some new drug that also costs $20 more. Well, he's basically told me I should have known what I could take.

Please warn CMT women about this widely prescribed drug. Macrobid is the generic name. I believe, I hope and pray I will be back to normal after this horrible experience.

Lithium

Q: I am a family physician caring for a CMT patient who is bipolar (manic depression). He has stopped his lithium due to info on the Web that lithium is contraindicated in CMT. Neither I nor his neurologist have found any medical literature describing such a contra indication. Your help would be appreciated.
David Lown, M.D.

Linda here - We asked Dr. Thomas Bird, Chief of Neurology, Department of Veterans Affairs Medical Center in Seattle, WA to reply to Dr. Lown's question:
A: This is one of those seemingly simple questions that turns out to be complex and sent me off to the medical library. Bipolar disorder (manic-depressive illness) is relatively common and lithium is a mainstay of therapy that is often critical to the patient's well-being.(This is impressively and poignantly described in "An Unquiet Mind" by Kay Jamison, Knopf, 1995.)

The key issues for your readers are: Does lithium cause peripheral nerve damage and is it dangerous to take if you have CMT? As best I can tell, there is no clear cut answer. There have been a few reported instances of severe nerve damage in persons who have been intoxicated or overdosed with lithium. Thus, there is some evidence that it is a nerve toxin in high doses.

There is very little information as to whether it causes mild nerve damage in normally prescribed doses, but one 20-some-year-old article suggests that it might. Lithium rarely if ever appears on lists of peripheral nerve toxins and is often not even mentioned in textbooks of peripheral nerve disease. It looks like this may be an "obscure" area of interest in clinical neuroscience about which we need more information.

It would be useful if any of your readers with CMT could tell us if they have ever taken lithium and whether or not there were any adverse effects.

I would presently be reticent to tell someone with bipolar disorder and CMT not to take lithium, but on the other hand, there is some evidence for nerve toxicity, so I would keep doses on the low side and search for more information.

Related journal articles sent by Dr. Bird:
Polyneuropathy in Lithium Intoxication by Geert Vanhooren, MD, Ides Dehaene, MD, et al. Muscle & Nerve 13:204-208, March 1990

Severe peripheral neuropathy due to lithium intoxication, Roger S. Pamphlett, Roderick A. MacKenzie. Letters, Journal of Neurology, Neurosurgery, and Psychiatry 1982; 45:656

Peripheral neuropathy due to lithium intoxication, Masanobu Uchigata, MD, Hitoshi Tanabe, MD, et al. Annals of Neurology, Vol.9 No.4, pg.414, April 1981

Effects of Lithium on electromyographic recordings in man, W.Girke, F.A. Krebs, B.Muller-Oerlinghausen. Int.Pharmacopsychiat.10:24-36 (1975)

Linda here: Dr. Thomas Bird answered a question from Dr. David Lown about the use of lithium and asked for feedback from people using lithium. This is what they said.

Substitutes for Lithium
Daniel Hunter, Oregon, U.S.A. writes: "This is in response to the requests by Drs. Lown and Bird regarding lithium. My mother's family has bipolar affective disorder, and after volunteering that side of my family for research, it seems about 50% of the extended family has it, as do I, one of my brothers and one of my daughters. (I inherited CMT from my father's family.) Neither my brother nor my daughter with bipolar illness have been diagnosed with CMT, and both have been tested.

"I am unable to take lithium without feeling like it is literally killing me. I was still teaching when I first took lithium, and it caused such severe tremors in my fingers, hands and arms that I could not keep a pen steady on overhead projector film, and sometimes I had a hard time controlling chalk on a chalk board. At that time, I was still walking with the help of AFOs, and CMT's progression in my hands and arms was just beginning. Lithium also caused a variety of other problems, such as the destruction of my sex life, which I believed were all neurologically based. This was before anything about lithium was published in your newsletter.

"My brother and daughter both take lithium with no notable side effects. I did extensive reading and research in bipolar disorder when I was diagnosed (and hospitalized because of it). I learned that when a drug treatment works on one member of a family it generally works on the rest. I went for several years poisoning myself, then taking controlled "lithium holidays" so that I could feel like a human being once in a while, though my family uses lithium successfully.

"Finally, about seven years ago, I was hospitalized again, and the doctors decided to try Tegretol, an anticonvulsant, which was noted by Japanese doctors to control mania in patients with epilepsy who were also bipolar. I have taken it now ever since that hospitalization and never had another manic episode, and I feel no side effects though it has several possible, including an immune system problem. It does nothing for depression in me, so I combine it with an antidepressant. After many years, five or so, of searching for an antidepressant that works for me, we finally found Wellbutrin. It does a great job and I feel no side effects.

"I've been taking a combination of Tegretol and Wellbutrin under close (twice monthly) supervision of a good psychiatrist. This combination is working well for me. Some antidepressants, by the way, caused convulsive and spastic episodes in me as well as hypomanic states. So, I'd have preferred just taking lithium, like other members of my family, but I felt that it was killing me. I often wonder if it contributed to the rapid progression in those years of CMT and my resultant need for a wheelchair. However, I am not angry that my doctors tried lithium. Bipolar illness destroyed my mother's life and consequently much of my childhood. It has been much scarier than CMT in my life. Without medical intervention, I am sure I would be dead by now. My family doctor "tricked" me into a mental hospital where they put a legal hold on me and first started me on lithium. Due to my mother's failed psychiatric experiences, which I saw as a child, I had hated psychiatrists and distrusted hospitals.

"I believe lithium damaged me even though it did control the mania. I think the fact that it hurt me and not anyone else in my family who takes it is pretty suggestive of it being contraindicated in the presence of CMT.

"Dr. Lown needs to know that many bipolar patients who are unable to manage lithium are being successfully treated with a combination of Tegretol and antidepressants. However, this combination must be closely monitored, especially in the first year, and I suggest that the patient be monitored by a psychiatrist as that specialty should know most about treating mental patients with Tegretol. It was not designed for this and the PDR didn't list it as something to treat bipolar disorder back when I started it. I do not know if that has changed."

Atenolol for high blood pressure exacerbated CMT symptoms
by Marilyn Durham, ME, U.S.A.

I was diagnosed with REM cycle sleep apnea in the summer of 1994. The cardiopulmonary specialist who diagnosed my problem placed me on protriptyline to help minimize the frequency and duration of my apneic periods. I developed asymptomatic tachycardia as a side effect of this drug.

In August of 1999 my primary care physician decided that my borderline high blood pressure should be treated with a beta-blocker, atenolol, so that both my blood pressure and the tachycardia I had could be treated with the one drug. It seemed that the atenolol was doing the trick as my blood pressure levelled off and my average resting heart rate dropped from the low 100s to mid 70s to low 80s.

Throughout the fall months of 1999 I noticed a gradual, but definite, progression of my CMT symptoms to the point that I was beginning to feel I would not be able to continue to work as a bedside nurse in the hospital for more than a couple more years. I consulted with a physiologist and had several physical therapy sessions to learn some exercises to help maintain my function as long as possible.

In May, 2000 I felt that my sleep apnea symptoms were worsening so I contacted my specialist who ordered another sleep study, anticipating that I might have to start using a Bi-PAP machine to help me breathe better during sleep. Surprisingly, the sleep study showed that the protriptyline was still doing its job very well in regard to my sleep apnea but the symptoms I thought were worsening in that regard were in fact caused by a second degree heart block during sleep caused by the atenolol. Needless to say I was promptly taken off the atenolol and advised to avoid all beta-blockers in the future.

After a couple of months off the atenolol I noticed that my CMT symptoms seemed to be gradually lessening. This trend has continued over this past year and today I'm pleased to say that I'm almost back to where I was neurologically speaking prior to starting the atenolol almost two years ago.

At a recent speaking engagement where I mentioned a significant increase in my CMT symptoms which improved after discontinuing a blood pressure medication, I met a woman who asked me what drug I'd been taking. She told me she suffers from HNPP and her symptoms had escalated since taking atenolol for blood pressure.

I had thought the effects of atenolol were unique to me and no one else would be similarly affected. Now I know that it appears to have affected at least two of us living within 15 miles of each other.