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 ?
Posted by GretaM (Member # 40917) on :
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?
Posted by Abxnomore (Member # 18936) on :
Mino has an excellent ability to penetrate the blood brain barrier; therefore, it is very effective for neurological symptoms.
Posted by LuluBelle (Member # 38865) on :
Thanks to you both.
So many have said that Mino helps with neuro that I was surprised when I found that post. And I am well aware that few of us are doctors.
My LL knows I want to try the Mino because of my neuro symptoms.
Anyone with more input, please chime in !
Posted by droid1226 (Member # 34930) on :
I've only heard of doxy advancing ALS in some cases.
Posted by mlg (Member # 35383) on :
Hi,
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.
Posted by Marnie (Member # 773) on :
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.
I often wondered if it is related to toxins from die-off.
Posted by Nancy L (Member # 42733) on :
Lulubelle,
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.
Posted by LuluBelle (Member # 38865) on :
Thanks to all.
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 ?
Posted by mlg (Member # 35383) on :
LuluBelle,
What is WW?
Thanks!
Posted by LuluBelle (Member # 38865) on :
Will Wiegman.
Refers to his thread regarding his protocol.
Posted by GretaM (Member # 40917) on :
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.
Posted by VV (Member # 38828) on :
Greta,
Has minocycline helped fatigue or weakness at all?
Posted by GretaM (Member # 40917) on :
Hi there VV,
Not fatigue as in feeling exhausted.
But did help muscle weakness significantly as the muscles can rest now.
Before I couldn't pull a pen cap off or flip a ketchup lid.
Now muscles get tired but after use.
Like going up a flight of stairs, then it will be hard to walk down a flight.
Before I couldn't go up, my legs would just give out.
But they used to twitch all the time, same as my torso.
Posted by Nancy L (Member # 42733) on :
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.