Author: Admin (---.vnnyca.adelphia.net)
Date: 10-28-02 16:12
>>> Make sure you read the "Minocycline Dosage Issues" Tutorial to get the latest info for your Doc on how to use Minocycline to cure Sarcoidosis<<<
>>> Make sure you read the information about the Herxheimer Reaction before taking Minocin <<<
The only way you can get rid of the microbes that cause Sarcoidosis is to kill them inside the inflamed cells that they have colonized. Your immune system has failed to do that, which is why you have the sarcoid inflammation.
Plaquenil (hydroxychloroqin) was one of the early drugs found to be capable of killing some microbes, but not many. At this point we have no experience with using Plaquenil to bring on remission.
The primary way to kill the bacteria is to use Antibiotics. There are three main antibiotics that have been used succesfully to improve Sarcoid symptoms. This message will examine each of them in turn.
The thing to remember is that your body picks up lots of different microbes as you journey through life. If you have the genetic pre-disposition to Sarcoidosis then each time you are exposed to these microbes a few of them will find a home in your granuloma. Thus you are likely to have many different types of bacteria that have to be killed in order to get a full remission/'cure'. And the bacteria is living deep in the tissue, they will not be all killed overnight. From time to time you will need "boosters" if symptoms return.
SarcInfo folks have a unique tool, in that we can use the D-Ratio as a measure of the effectiveness of each antibiotic therapy. It indicates total inflammation, and typically drops in steps each time a species of bacteria is eliminated. When the D-Ratio has reached 1.5, or so, the effect of the antibiotics will be slight, and any suffering that you still have is most likely due to your D intake/storage, or to the drugs you have been given over the years, and you will need to deal with that issue as well.
There is a seminar article on the following antibiotics "New Uses for Older Antibiotics" that is worth reading, and printing for your Doctor.
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1a. Minocin - minocycline
The antibiotic that gets rid of the worst bugs, Rickettsia and Borellia
Minocycline, of which Minocin is a well-metabolized form, is a synthetic variant of Tetracycline. It is more effective than Tetracycline because fewer bugs are resistant to it, and also because "compared with conventional tetracycline, minocycline is ten times more lipid-soluble", "minocycline has particularly good tissue penetration and excellent CNS penetration" (read more here)
I took a photo of a Lederle Minocin capsule:
http://www.sarcinfo.com/lederle.jpg
Note that on the left it says "Lederle M46" and on the right "Lederle 100mg". Lederle is owned by Wyeth now, and there may be different markings used throughout the world.
Don't take Minocin with Calcium tablets or antacids, or with Orange or Grapefruit Juice. I recommend weak Hot Tea (not coffee) to wash the capsule down. Carnation Hot Chocolate mix (in water) is also suitable.
I suggest taking your blood pressure twice a day to make sure it is heading downward. An allergic reaction to the Minocin should be sending it upward, herxheimer should send it down (over 2-3 weeks).
STEP BY STEP TIMELINE:
1. Antibiotic therapy will not be fully effective in immune-suppressed patients. Patients must be weaned from Prednisone and Methotrexate if reliable results are to be acheived
2. Take your first Minocin on a weekday morning (when your Doctor will be in his office) and wash it down with plenty of weak hot tea (or Hot Chocolate in water)(not coffee). If you have not confirmed that your 1,25-D level is below 45 pg/ml then the initial dose should be no more than 50mg.
3. You may feel unusual within 2 hours. This is usually Jarisch-Herxheimer shock. For those with low 1,25-D levels (under 30 pg/ml) this is light-headedness and mild nausea and mild muscle and joint pains. And irritability. If your starting 1,25-D level is higher, then you can expect to experience some greater degree of Herxheimer.
4. Herxheimer feels like a worsening of all your Sarc symptoms at once. This is because the bugs are driving up the production of 1,25-D as they die. Some patients have reported worsening airways constriction and difficulty breathing. Don't tough this symptom out - get some oxygen immediately (eg at your Doctor's office). Similarly for "heart flutters". If you get any noticeable cardiac symptoms then stop taking Minocin until you can get an Angiotensin Blockade in place.
5. YOU DO NOT HAVE TO TAKE ANOTHER MINOCIN if you could not control the symptoms of the first - kill the bugs gradually, don't attempt to do it all at once.
6. If you have herxheimer discomfort, you can reduce the dosage to 50 mg every other day, and gradually work up to the point where you can tolerate the full 100 mg dose again as the bugs, and the herxheimer they were causing, gradually die off. Your dosage and antibiotic may vary - be sensible - you have plenty of time to kill the bugs - you have already lived with them for years
7. There are many different species of CWD bacteria. Not all of them will succumb to Minocin. You will need to be creative in your antibiotic therapy beyond the initial 60-90 days on 100mg Minocin every-other-day. Three other antibiotics known to be effective in Sarc patients are listed below.
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2. Doxycycline
Doxycycline is often preferred by doctors, for some strange reason. This tutorial explains "minocycline has particularly good tissue penetration and excellent CNS penetration; although doxycycline does penetrate the CNS, it does not do so to the degree that is achievable with minocycline" It is capable of killing a slightly different spectrum of microbes than Minocin. Both are capable of killing a lot more than Tetracycline. Take a look at the "Doxycycline worked for me" discussion thread.
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3. Clarithromycin (Biaxin)
This antibiotic is frequently used for Strep infections, chances are your Doc is comfortable with prescribing it. It is very effective against Mycobacteria, that are certainly capable of causing sarcoid inflammation, and also H.Pylori and a number of other common pathogens. I recommend you ask Doc to try a 7 day course of it at two tablets (morning and afternoon) every second day. Calrithromycin also works well when added to a minocycline regimen. One 500mg tablet qod with the minocycline.
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4. Bactrim DS (Sulfa/Trimeth)
Bactrim acts to stop bacteria replicating. Because it does not actually kill living bacteria there should be less herxheimer from using this antibiotic (it still gave me quite a lot of discomfort, but not pain). Not to be used for long periods, just a week or so at a time. Doc should be comfortable with prescribing it for a short trial at 2 (morning and evening) every second day. Bactrim seems to work best when added to a minocycline regimen, one Bactrim DS qod with the minocycline. It has better eye and ear penetration than minocycline alone.
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You need to be 'creative'
(This is where an Infectious Disease specialist might be able to help)
Personally, Minocin worked wonders in the first few weeks, and continued to reduce neuropathy out to 60 days, but after 120 days it got to a point where there was little incremental benefit. I found that soaking a hottub (maybe a hot bath might work) at 102 degrees until my body temperature had risen by about 2 degrees (using a digital thermometer)(but don't let it get too high, and certainly not over 100) made a huge difference, kicking in some minor herxheimer again and then fixing the remaining neuropathy, and more importantly, making my eyes less hyper-sensitive to bright light.
--->Update - 2/17/03 - 200mg qod Minocycline found bugs that 6 months of 100mg therapy had missed
--->Update - 2/17/03 - Study and implement the new Minocin Dosing Tutorial
---> Be creative - Herxheimer is your friend - you have to kill all the gram-negative bacteria
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Constipation
The 100mg every-other-day Minocin dosing regime eliminated the side effects that are reported in the literature (but your mileage may vary...) Constipation was the only problem I had with antibiotic therapy. "Solaray" "Multidophilus" lactic flora, taken three times a day (but NOT within 3 hours of taking the Minocin) seemed to help a bit.
I found that Milk of Magnesia worked well, at quite low dosages.
For severe constipation the Over-The-Counter laxative 'Dulcolax' (Bisacodyl 5mg) worked fine (but only use it occasionally - it is addictive).
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When you get remission - you need to strengthen your immune system with Vit D supplements
As the antibiotic does its job be careful that your 1,25-D level does not fall too low (mine fell to 13.5 pg/ml when I went into remission, well below the optimal 20-25 pg/ml). You will probably find it more convenient to take a D supplement that to try and juggle sunlight exposure. Keep it very, very, small. I used some Calcium/Magnesium and Cholecalciferol softgels ("Nature's Life") which give 200 IU when you take three capsules a day. Take only one capsule (66IU) every two or three days, as needed, and take capsules more frequently as needed to maintain the target 1,25-D level (you will recognize the symptoms of low 1,25-D after a while)... If you take too much D then you will need extra ARBs to knock back the symptoms...
I think that trying to use just sunshine to boost up your D supplies (when in remission) is too erratic. But don't take a 'normal' 400 IU capsule - or you will be guzzling extra ARBs for a week
It seems as though your calcium/bone system gets back into normal kilter when the 1,25-D is at low levels (in remission), but I haven't rigorously proved this yet...
..Trevor..
ps: Remission (IMO) is defined by "a wonderful feeling of liberation from all those years of suffering"...
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