Recent content by NotALS!

Thanks Nikki. I believe the infection FL1953 causes ALS in people that have the necessary gene(s). I have the infection but not the exact sequence of genes. If I hadn't pursued lyme treatments and ivig, I would be dead by now and I would have been classified as a death caused by ALS. It depends...

Ok. Just wanted to let fellow patients know that someone who was dxd with ALS multiple times did survive and improve with antibiotics and IVIG. I never tested positive for lyme or coinfections, just FL1953.

Hi. I want to share my ALS journey with others to let them know that it is possible to be misdiagnosed with ALS. Since my story spans 8 years, I will try to give a brief synopsis of what cured (yes, I said CURED) me. It started in 2009 when I lost strength in my left hand. It quickly spread to...

I was diagnosed with ALS 5 years ago. After numerous antibiotics and twice monthly ivig infusions, I have regained 60% of my strength and breath without any aid. I never tested positive for Lyme but it seems that I have some type of infection since my ALS like symptoms developed after a severe...

It is incredibly hard to find a dr who will try ivig even with positive results with rocephin. IVIG is a very expensive drug and most insurances don't want to pay for it. I'm sure they don't encourage drs to prescribe it. My advice is to check out Lymenet.org and pursue your disease as if it was...

I've had muscle cramps on and off the last 4 years since my diagnosis. I'm lucky that I responded well to ivig and my insurance is continuing to pay for it. The muscle pain has returned recently and the only thing that makes it better is amoxycillan. I don't test positive for lyme but I don't...

I have been on IVIG for a year now, treatments twice a month. I've had remarkable results. It has saved my life. I am a 53 yr old female and was diagnosed with ALS 4 years ago. I initially tried rocephin and had great strength improvement and cessation of progression. Eventually, I tried...

I've had every test (including numerous pricey genetic ones) and they all point to ALS. I'm still doing well and have IVIG twice a month. My breathing gets difficult as the week goes on and improves after the infusion. I'm hoping this isn't temporary but I am concentrating on enjoying my...

has anyone else had such good results with ivig? is it temporary?

I've been diagnosed with ALS 4 times and seen 6 neurologists. I've had 7 EMGs, 3 MRIs, 2 CAT scans, numerous xrays, hundreds of blood tests and taken tons of antibiotics prescribed by 3 of the best known lyme specialists in the country. I was still deteriorating, shaking and barely breathing at...

I offered to kill myself by taking sleeping pills yesterday. My husband and son were horrified. It made me realize that even though my ALS is more work for them that they want me around anyway. It made me feel so loved and blessed. :o

This is good to hear, thank you. I'm surprised Dr David at MassGeneral didn't know about it.

I've been going to lyme docs for 3 years and tried every antibiotic and antiparsitic drug available. Most of them helped for a little while, ceftriaxone was the best. Eventually none of them worked. The IVIG has helped tremendously but I'm afraid it too will become ineffective over time. I...

I have monoclonal gammopathy, a precusor to bone marrow cancer, as well as ALS. I also have periperal neuropathy. Rituximab is sometimes used as a treatment. I'm currently on IVIG and its helped alot. I just thought it was an interesting coincidence.

Everytime one doctor says I don't have ALS, another one says I do. Its been back and forth 7 times. Noone can figure this out! I just went to MassGeneral and the head of the EMG lab, Dr David, said I didn't have ALS because I improve on antibiotics and IVIG but then he did an EMG and said I DID...