Has Dr F noticed a connection between FL1953 and ALS? I was dxd with ALS in 2010 and have been trying different abx but my atrophy is still progressing slowly.
I just tested positive for FL1953, could this bug cause ALS in some people?
Posted by kelmo (Member # 8797) on :
Yes. But, I know people who also had Lyme Disease and ALS. Treating the Lyme Disease healed the ALS symptoms. There was a beloved doctor in Colorado who treated himself for this reason. He has since retired, but he was the authority on it.
Dr. F is our doctor. What he is noticing is a combination of the FL1953 and other organisms combined to create the symptoms for certain chronic illnesses.
Since he is in the research phase I did not ask for specifics. He just said that certain combinations of the FL1953 and another organism can contribute to Autism. Pair it with another organism and get Chronic Fatigue Syndrome...etc.
He has told my daughter that he is really trying to keep her from developing MS. So, that tells me it's another combo pack she is dealing with.
Hope that helps. Are you showing signs of ALS? Were there any other infections detected? My daughter has gone through treatment for babesia and bartonella. If Lyme was in the mix, it never showed up.
Posted by 2young2dieMom (Member # 25434) on :
I've only tested positive for fl1953, nothing else on ingenex or wb. I've been taking different abx for 2 years and am still getting weaker.
I have muscle atrophy in my neck and shoulders, now my legs are weaker and I can't climb stairs.
I guess Dr F doesn't have any specific treatment that helps ALS yet. I've been going to the clinic that Dr M started in CO. I keep getting c.diff from all the drugs and I'm still gradually getting weaker.
Posted by Catgirl (Member # 31149) on :
Maybe you're missing a co infection. I was sliding backwards and my new doc tested me for a bunch of stuff I didn't even know I had!
Posted by Rumigirl (Member # 15091) on :
Mycoplasma was one of the important coinfections that contribute to ALS. And a negative test for any of these infections means nothing. You need to be treated for all the suspected pathogens, judging by symptoms (and common sense).
Heavy metals are important in the neurological illnesses, also. Along with lots of other issues to address: parasites, Candida, etc.
I'm sorry to hear about what you are going through. Maybe it is time to try rifing and herbs, too, due to the c-diff.
Posted by jdp710 (Member # 34017) on :
I would also very much look into mold. Mold is surprisingly common. Would recommend to do a google search on mold and ALS and then read http://www.royalrife.com/mold_summary.pdf Posted by little_olive (Member # 28063) on :
If you are on Rifampin, Zith, Amoxy, and Flagyl, that treats just about everything out there that we commonly get. Bartonella, Lyme disease, mycoplasma, CPN... Ehrlichiosis isn't COMPLETELY covered but I've never heard of causing ALS.
The only thing you appear to be missing is treatment for Babesiosis. Do NOT do NOT DO NOT let a negative test persuade you into believeing you can't have it. (You know how many negative tests I got before I finally, one day, got a positive result even though I'd had it all along?)
This is the organism that affects the muscles the worst out of the most common coinfections, I think. Everyone always talks about the air hunger, but it causes severe muscle weakness and exercise intolerance, as well as decreased muscle function following activity.
If FL1953 is a protozoan, perhaps treatment for Babesia such as with Bactrim or Plaquenil or Mepron or Malarone (Zith only treats it a little bit), might be of help for it also? Kill two birds with one stone? If what you're doing isn't working, change it!
Your sig says you only did Mepron for two weeks? If it was because you responded violently to it, that might be your breakthrough and a sign that it was working.
I wish you luck and bravery in fighting whatever you have that's trying to bring you down
little olive
(P.S. - As far as c. diff is concerned, seriously consider adding s. boulardi to your probiotic regimen! Just don't take it around anti-fungals. It's a good yeast that doesn't harm you, and has been proven to reduce the incidence of c. diff during antibiotic treatment by 50%. You can get it where you buy your usual probiotics at the health food store. Refrigerated is ALWAYS best.)
Posted by 2young2dieMom (Member # 25434) on :
I do take florastor and s.boulardi, also vsl3. I have also had my house remediated for mold.
I tested high for lead and mercury so I'm taking chorella as much as tolerated. I have gerd and take prilosec every morning otherwise I'll get pnuemonia again.
Mepron made me extremely suicidal. I'm sure it was killing stuff but it was too hard for me to handle it.
I have the feeling Ivromectin is going to be difficult too but I have to try it.
Posted by hadlyme (Member # 6364) on :
Do take it slow with the Ivermectin.
Yes, he does think ALS and FL1953 are connected. He is doing a couple of major studies on it right now.
ALS is an autoimmune disease.... no one knows what triggers it. Findings are that this protozoan is one of the triggers. Stay in his protocol please!! Posted by little_olive (Member # 28063) on :
Definitely do the Ivromectin. And start as slow as possible so that you can stick with it. The worst of us often have to start at 1/3 or 1/2 the doses that others do.
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