Author: Meg (---.188.244.147.euc.wi.charter.com)
Date: 01-11-03 19:13
For those of you who may be unconvinced of the effectiveness of Dr. Marshall's protocol, I'd like to share my success story.
In Feb 2002, I consulted a neurologist regarding the progressive numbness/weakness/atrophy of my left foot/leg and was eventually diagnosed with tibial neuropathy, etiology unknown. A couple months later, a CT scan to assess a unilateral sternal thickening was inconclusive but revealed multiple lung nodules and prominent lymph nodes. The neurologist connected these symptoms and suggested sarcoidosis. Because the sACE was negative and my symptoms were not debilitating, he recommended wait and watch. Searching the Internet, I came to the conclusion that I had many features of Sarcoidosis: history of skin lesions, fatigue, night sweats, neuropathy, numbness/tingling of my hands, joint pain, irritability, photophobia, muscle pains/weakness, leg cramps, dizziness, nasal congestion, history of red eye, cutaneous anergy, hypergammaglobulinemia, etc.
Eventually, I came across Dr. Marshall’s paper on Remission in Sarcoidosis and was prompted to consult with a pulmonologist and then an ophthalmologist. Frustratingly, I had no suspicious tissue to biopsy and these specialists were uninterested in an unproven treatment. Nevertheless, I discontinued Vitamin D supplementation and began avoiding foods containing Vitamin D. Within 2 days, my severe nocturnal leg cramps had resolved. I tried, with limited success, to avoid sunlight and bright light exposure. I also renewed my prescription for tetracycline which had previously kept my skin lesions under control. At my request, my primary physician, an internist, ordered the D-metabolite testing. As before, my sACE came back within normal range but the 25-D was elevated at 25 (probably reflecting previous Vitamin D supplementation) and the 1,25-D was elevated at 38.
On 12/23/02, I began taking 40mg of Benicar every 8hrs. By that time I was having significant, immediate adverse reactions to minimal sunlight exposure and delayed debilitating fatigue. During the first week of ARB therapy, I experienced an increase in symptoms, especially fatigue, but then I noticed a significant increase in my energy level.
One week later, I began taking 100mg of Minocin every other day. I have experienced a variety of Herxheimer reactions, most mild but one severe enough to confine me to bed for 12 hrs. After each Herxheimer episode I have noticed an improvement in various symptoms. My nasal congestion no longer requires a steroid spray and I have fewer sharp joint pains. I no longer routinely nap once or twice a day and my energy level improves daily. My legs are stronger and less achy. The skin lesions that developed as a result of Herxheimers disappeared quickly. Night sweats are less frequent and probably related to Herxheimers. I no longer get dizzy and disoriented with minimal sunlight exposure since I now have good eye protection with the NoIR sunglasses.
This represents an approximate 50-60% improvement in my symptoms with only seven every other day doses of Minocin. I am confident that these measures are effecting a decrease in my level of 1,25-D. I will recheck the D-metabolite levels in 2 months but the increase in my quality of life is immeasurable. My future's so bright, I'm glad I'm wearing shades!!
Meg
Addendum: One month post initiation of ARB and antibiotic therapy, my symptoms continue to abate in an erratic pattern. Most excitingly, my numb left foot and lower leg are painfully and slowly coming back to life.
Addendum #2: It's been four months since I started taking Benicar, then Minocin, then B. I have experienced a variety of Herxheimer reactions and the gradual resolution of most of my symptoms. My D-metabolites at a 3 month recheck had reduced considerably, to the point where the Herxheimer reactions are now minimal. Coinciding with that, just the past couple weeks, my energy level has amazed me. I can now, once again, work a full day without abnormal fatigue, my brain fog is gone, I'm no longer irritable, all my skin lesions are gone, the joint pains have disappeared along with stiffness and leg cramps. I still have some left tibial neuropathy to resolve but my foot is 80% less numb and my legs have almost recovered their strength. My nasal passages are clearer but seem to be the most stubborn of the symptoms to relieve. But all in all, this has been an incredible journey. I've taken some simple, slightly inconvenient lifestyle and dietary measures, some trusted antibiotics and a safe anti-inflammatory agent. I paid the price with the Hersheimer reactions which only proved to me that Trevor is right. Now, I am reaping the benefits of feeling well and I know I will eventually be completely disease-free.
Addendum #3: I've had five months of ARB and antibiotic therapy now. My Herxheimer reactions are pretty mild which is really nice. But I can still feel the antibiotic working to resolve my tibial neuropathy as my left leg reacts with increased weakness, achiness and cramps. The most exciting development is that I can now wiggle those toes that were paralyzed due to atrophied muscles from denervation. Won't my neurologist be surprised?
Addendum #4: It's been 8 months now and I'm still improving. I've increased the frequency of the Benicar to every 6 hrs. which has helped counteract the Herxheimer reactions. I am able to tolerate 200mg (the maximum) of minocycline every other day. If I forget a dose of Benicar, I am aware within the hour as symptoms of fatigue, irritability and legs aching make normal activities more difficult. Other Herx symptoms such as night sweats, leg cramps, skin lesions, nasal stuffiness, hand numbness and minor pains come and go. Just last week I found that I couldn't see the computer properly with my indoor NoIR sunglasses on and now I can view the screen in comfort without them. The foot numbness is 95% better, my legs are stronger and I can usually breathe through my nose with ease, but I won't settle for anything less than 100% resolution of all my sarc symptoms.
Addendum #5: I saw my Mayo neurologist after nine months of treatment with Benicar and antibiotics. Since he did not prescribe this treatment, he was surprised to find that my tibial neuropathy had considerably improved. He noted increased foot strength and was able to elicit an ankle reflex that I had lost. He was impressed enough to order a short trial of Z. The combination of minocycline and Z is provoking increased Herxheimer reaction and helping to resolve the lingering leg weakness/numbness and fatigue that are my chief complaints now.
Moderator note: The maximum dose of mino is now 100mg every other day.
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There will be tough times ahead, but now you have seen the light at the end of the tunnel... focus on it...
. (If you haven't yet read the simplified summary of this paper, there's a link for it on the top and bottom of every page of this site. If you're a sarc patient, you MUST, in my opinion, read it and reread it until you understand it.)
