It said that Minocycline should not be used in cases of ALS.
Why is this ?
I want to try Mino because of my neuro symptoms. I have NOT been diagnosed with ALS. But I do have twitching/weakness/wasting.
Is the warning just because Mino hits the nervous system and could cause a neuro herx ?
Does Mino affect glutamate in the nervous system ?
Some other reason ?
-------------------- You won't know how sick I was until you see me when I'm well ! Posts: 123 | From Colorado | Registered: Sep 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
My symptoms are primarily neurological.
Bells palsy cause muscle loss on one side of my face, and the left side of my body remains twitchy and weak.
I don't know in regards to ALS specifically.
But in regards to my neuro lyme, minocycline helped quite a bit.
Does Terry Wahls have ALS? Because she uses mino.
Can you run this by you LL in an email?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Mino has an excellent ability to penetrate the blood brain barrier; therefore, it is very effective for neurological symptoms.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Yes I had a top notch doc about 1.5 years ago and I had major ALS like symptoms. I got pretty sick with kidney problems (had been on multiple antibiotics and mepron) then switched me to monotherapy, but symptoms progress horribly started having problems swallowing. They told me that latest data showed that if you have ALS type symptoms you cannot do monotherapy with Doxy. They said I could combine tetracycline family with cyst buster but not tetra family by itself.
I would also definitely explore anti-malarials, anti-parasitics, heparin, boluke, crypto, art, PEMF, infrared sauna, colonics, juicing.
Posts: 697 | From CA | Registered: Dec 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
If you live in Colorado/other states that have changed legislation...you maybe in luck.
Medicinal "pot" is legal and it looks to put ALS in remission.
mlg's docs said "They said I could combine tetracycline family with cyst buster but not tetra family by itself."
Minocycline is a tetracycline family, and crosses the blood-brain barrier, which doxycycline does not. A cyst buster is grapefruit seed extract (GSE) non-prescription, but the tindamax recommended with mino by WW is a bleb-killer.
Most of the antibiotics are known to cause threatened Bb to throw off blebs, which later turn into spirochetes if you don't kill them.
Posts: 254 | From North Carolina | Registered: Nov 2013
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From reading WW it seems no one (ALS symptoms or not) should do Mino without Tinda.
So it sounds like the problem is doxy because it doesn't get into the nervous system. This makes sense, but I'm still a wee bit concerned about trying it.
Anyone out there who has had muscle twitching in arms and legs (not limb jerking) and weakness and muscle wasting who has tried mino ?
-------------------- You won't know how sick I was until you see me when I'm well ! Posts: 123 | From Colorado | Registered: Sep 2012
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-------------------- You won't know how sick I was until you see me when I'm well ! Posts: 123 | From Colorado | Registered: Sep 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi LuluBelle,
Yes, I had muscle twitching.
Rampant. Small connective muscles. Big muscles. Torso muscles. And in throat. Sometimes even my diaphragm-affects breathing and swallowing.
My LL always paired high dose mino with high dose tinidazole.
Did have herx-increase in twitching/seizure like activity when first few days after starting mino but lasted 48 hours.
Had to stop it because of diareha scare.
When restarted it again-few days in, herxed again.
I DO NOT reccomend pulsing mino in short intervals. No No No!
Mino is a gooder after the 48 hour herx.
Then my doc treated bartonella which took care of the remainder of the twitching.
I don't choke on my food anymore or when I drink water. It is really nice. Hands are getting stronger.
I took mino for about 4 months.
Still on tinidazole now. (about 11 months).
In my opinion, and I will stand by this firmly, pulsing mino one day on/one pill is a real $h|tty idea!
Do NOT do it! It will not reach high enough serum concentrations to be effective.
And even pulsing for a few days-you will only herx once you reach effective serum concentration-it will be pure unpleasantness. You won't feel the neuroprotective effects of mino.
It really helped me. I took it with tinidazole.
It put the brakes on the constant twitching.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Tindamax is a brand name or later form of Tinidazole, so they are basically the same drug. I read that one of them had to be taken several days, I think 14, to reach a certain level of concentration, but then could be pulsed to some extent as it had staying power.
Is that the mino? I do not think it was the Tinidazole/tindamax.
I saw some research by woman Dr. S, that showed that the tetracyclines doxy and mino both killed spirochetes better than samento, but made more blebs occur than did samento. At least mino crosses the blood-brain barrier.
Posts: 254 | From North Carolina | Registered: Nov 2013
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