Alinia and breathing better!

[NotALS!]

After being diagnosed with ALS two years ago, I chose to pursue lyme treatment. I didn't test positive for it but had all the clinical symptoms.

I began with doxycycline which made me violently ill with diarrhea but improved my mood better than any antidepressant I had ever been on. I only took the drug for 4 days and lost 10 lbs. Too much too fast.

Then I tried rocephin for 9 months via IV. I had a horrible rash reaction but slowly built up a tolerance with desensitation. The strength came back to my legs and my arm atrophy slowed. I developed a staph infection so the picc line had to come out.

Then there were numerous oral meds and consequently c.diff. Now I'm on herbals and getting weaker.

Then I tried an antiparasitic drug called Alinia. My breathing got signifcantly better! After a month, I had to go off due to diarrhea again so now I'm on another antiparasitic drug and it isn't helping as much. The breathing difficulty has progressively returned.

I have tested positive for the Fry bug, or FL1953. Ivermectin didn't really help but Alinia did so I wanted to share that with anyone who wants to try it. I don't think it will hasten ALS like an antibiotic but it can be tough on your digestive system.

Just thought I'd share some glimmer of hope.

 

[Danijela]

What is an antiparasitic drug?
Who prescribed it?
And what exactly is it meant to treat?

Thank you. D

 

[wattif]

What is the Fry bug? Also, I didn't realize that taking an anti-biotic gives you als or does it just escalate the symptoms?
I am new here and till trying to learn.
Thanks

 

[momap53]

There is no data to support that antibiotics give you ALS.
NotALS! was taking an antibiotic for treatment.

 

[BrianD]

I don't think it will hasten ALS like an antibiotic but it can be tough on your digestive system.

Also, I didn't realize that taking an anti-biotic gives you als or does it just escalate the symptoms?
I am new here and till trying to learn.
Thanks

The first statement is much too generic. There have been various datapoints that antibiotics can have an effect on the progression rate of ALS.

Initially minocycline showed promise to slow down ALS progression. It went into clinical trials, but the trial was terminated early because the wider participant group showed it actually increased the speed of progression.

There is currently a clinical trial with ceftriaxone (generic for Rocephin) that has reached stage 3. Early feedback from some participants seems promising but I haven't got any data to support that other than previous comments on this and other forums.

I've never seen information that says antibiotics in general speed up progression.

 

[NotALS!]

I've been a patient at 3 well known lyme clinics and there is the theory of that ALS could be the end stage of untreated neurological lyme or some type of parasite/organism infection. If an ALS patient's disease is too advanced and they are given high doses of antibiotics, too much of the parasites are killed at once resulting in a massive die off producing toxins that can hasten the ALS symptoms and death.

I've struggled with tolerating antibiotics for almost 3 years now. My atrophy and weakness continue to advance slowly so I'm not sure if the drugs are helping or I just have slow progression ALS. I've been losing muscle since 2007.

A few antibiotics have made me feel stronger: doxycycline, rocephine and now alinia. All are very difficult for my gut to tolerate and one I'm very allergic to.

To be clear: one neurologist at Yale thought I had ALS but 2 others elsewhere felt that I didn't. I have so many lyme symptoms like numbness in my face/hands/feet. voice loss and then regained speaking but not singing, tongue faciliation improved, ringing in ears, burning sensations on my skin, muscle loss/atrophy in the back of my large joints first shoulders now hips. My diaphram has shown a 30% decrease in function but I hope the alinia will help in time.

I've never tested positive for any infection except FL1953, which is not an organism recognized by any dr but the one who claims to have identified it. His name is Dr Steven Fry in AZ if anyone wants to look up info on him. I've spend thousands of dollars on tests, prescription and herbal medicines. Still no definate diagnosis but I'm not concerned with the label they put on me at this point. I try to live in the moment enjoying my family and hoping the next new drug might work. I just wanted to share my experiences and maybe offer some hope.

 

[slavomir]

Hi, I have similar experience with garlic - Allium sativum - it contains antibacterial organic polysulfides like allicin - and it also helps my father with better breathing. I do not know why, but it helps. But he must avoid drinking milk, because milk cause increasing of mucus in lungs. But yogurt is OK, it has very good consistency a helps eating. I mix yogurt with baby food and it is perfect for eating.

He use also Mestinon - It helps a little, but may also increase producting of saliva, so one must be carefull of overdose.

 

[NotALS!]

My second try with Alinia doesn't seem to be helping as much. I'm on the full dose again but my breathing hasn't gotten much better. I've always had trouble with breathing and muscle weakness during hot weather and this summer has been horrible. My dr is going to try Mepron next. I get very depressed when I take that so I hope to be back here at some point.

 

[Gusflower]

Try Tinidazole. And take it despite your troubles with the stomache. Unless you have blood in your stool you should go on.