NotALS!
Distinguished member
- Joined
- Aug 28, 2010
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- lyme
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 my shoulder. I was diagnosed at Yale with ALS. I was 49. My neurologist immediately said "don't try antibiotics, they don't work and just make you sick" Hmm, why would I try antibiotics? He didn't elaborate.
So after considering suicide, and a week of Ativan, my husband and I started researching alternative diagnoses on the internet. Turns out that Lyme disease is commonly mistaken for ALS. I had had a negative lyme test so I thought that wasn't it. The more we read, the more we realized lyme tests were often inaccurate.
Now to find a doctor who would treat me with a negative lyme test. Luckily I found a doctor who was very experienced in lyme and coinfections who immediately gave me doxycycline. I had a dramatic reaction. I felt euphoric and immediately regained energy and leg strength. Unfortunately, I also got sick as a dog. I learned later that this is from massive die off from the lyme. I could only tolerate doxy for 4 days.
Next, my doctor tried rocephin via a picc line for 9 months. I was severely allergic to it and broke out in painful hives all over but it worked so I slowly was desensitized to the drug until I reached the usual dosage per day. My insurance switched me to cephtriaxone to save money, which didn't work as well but it still helped my strength and energy. The picc line lasted until it got wet in the shower one day and I almost died of sepsis.
Next Doctor. I tried another famous lyme doctor who prescribed massive antibiotics at the same time. At one point, I was on 5 powerhouse antibiotics at one time. Unfortunately, she didn't know how to counterbalance the rest of my system and I wound up with CDiff and was very sick from that for 6 months.
Next Doctor. I found another lyme doctor who was very young and passionate about lyme treatment since he has been infected himself and had gotten better. He was able to balance my system with supplements while trying a few antibiotics at a time. I got back on track but decided to try Doxycycline again.
Big Mistake. This time, doxy affected my breathing ability. Until now, my breathing had been unaffected. Within a month of taking doxy, I started not breathing at night. Over the next year my breathing capacity deteriorated to the point that I was close to being put on a respirator. During this time, I was also researching other ALS patient stories and came across a woman who had started an ALS online support group. She emphatically advised against taking doxycycline. Everyone she knew that had taken it died quickly of breathing difficulties. Wish I'd seen that sooner.
So during all my lyme treatments, I went to various other neurologists hoping for a different diagnosis. Yale, Mass General, and MKMG all said ALS. Mt Sinai didn't do any tests but just listened to my story and since I had gotten improvement with antibiotics, they didn't think it was ALS. That gave me hope anyway. I had 8 EMGs, 2 CAT scans, xrays, countless blood tests, spinal taps, a bone biopsy etc. can't remember everything. Nothing else showed up so they just said ALS.
Eventually, my breathing and body weakness progressed to the point where I could barely walk and needed a neck brace to hold up my head. We read about a treatment called IVIG and convinced a neurologist to try it although he didn't believe in lyme. Well, it worked, partially. I have been on IVIG, twice a month, for almost 3 years now. Its horribly expensive but luckily we have awesome insurance so I was very fortunate. I got better but was still having a hard time breathing at night.
In the meantime, my lyme doctor was still testing me for infections at specialty infectious disease labs and we finally got a positive result. I had a severe infection of a parasite called FL1953. Here is a link that describes it: FL1953 Protomyxzoa Rheumatica: An Introduction
Finally, an answer!!! The doctor that discovered this parasite believes that this is the cause of ALS. Seems simplistic, but guess what, I GOT BETTER. My lyme dr started me on Alinia, a strong anti malaria drug, and my breathing has improved dramatically. I also got a dental appliance for sleep apnea and now I don't even need the cpap at night.
So that's basically it. The combination of IVIG and Alinia are the magic combo that I believe has healed me. It makes me wonder how many others have been diagnosed with ALS that didn't pursue lyme treatment or weren't well enough to tolerate it. Insurance is a big obstacle too, they certainly don't want to pay for and I'm sure they penalize doctors who prescribe IVIG.
I'm not a healthcare professional, but I'm a professional patient. My opinion is that all autoimmune diseases have unknown causes. Lyme (and a myriad of coinfections) hide in our bodies and disguise themselves as healthy cells. Our immune system can't tell them difference between the parasites and the healthy cells so it attacks the healthy ones. Depending on your genes, that's the autoimmune disease you end up with.
I've watched 2 parents die of Alzheimer's and both had lyme. Their symptom progression was similar to my own except for the brain involvement. My brother just had a scary bout with guillain-barré syndrome and has recovered with IVIG as well.
This has been a giant game of chance. So many of my doctors have taken huge career risks in treating me and I am very grateful. Because of that, I am not able to share specific doctor's names but I can tell you what treatments have worked for me. And, yes, I can say I survived ALS. Keep fighting.
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 my shoulder. I was diagnosed at Yale with ALS. I was 49. My neurologist immediately said "don't try antibiotics, they don't work and just make you sick" Hmm, why would I try antibiotics? He didn't elaborate.
So after considering suicide, and a week of Ativan, my husband and I started researching alternative diagnoses on the internet. Turns out that Lyme disease is commonly mistaken for ALS. I had had a negative lyme test so I thought that wasn't it. The more we read, the more we realized lyme tests were often inaccurate.
Now to find a doctor who would treat me with a negative lyme test. Luckily I found a doctor who was very experienced in lyme and coinfections who immediately gave me doxycycline. I had a dramatic reaction. I felt euphoric and immediately regained energy and leg strength. Unfortunately, I also got sick as a dog. I learned later that this is from massive die off from the lyme. I could only tolerate doxy for 4 days.
Next, my doctor tried rocephin via a picc line for 9 months. I was severely allergic to it and broke out in painful hives all over but it worked so I slowly was desensitized to the drug until I reached the usual dosage per day. My insurance switched me to cephtriaxone to save money, which didn't work as well but it still helped my strength and energy. The picc line lasted until it got wet in the shower one day and I almost died of sepsis.
Next Doctor. I tried another famous lyme doctor who prescribed massive antibiotics at the same time. At one point, I was on 5 powerhouse antibiotics at one time. Unfortunately, she didn't know how to counterbalance the rest of my system and I wound up with CDiff and was very sick from that for 6 months.
Next Doctor. I found another lyme doctor who was very young and passionate about lyme treatment since he has been infected himself and had gotten better. He was able to balance my system with supplements while trying a few antibiotics at a time. I got back on track but decided to try Doxycycline again.
Big Mistake. This time, doxy affected my breathing ability. Until now, my breathing had been unaffected. Within a month of taking doxy, I started not breathing at night. Over the next year my breathing capacity deteriorated to the point that I was close to being put on a respirator. During this time, I was also researching other ALS patient stories and came across a woman who had started an ALS online support group. She emphatically advised against taking doxycycline. Everyone she knew that had taken it died quickly of breathing difficulties. Wish I'd seen that sooner.
So during all my lyme treatments, I went to various other neurologists hoping for a different diagnosis. Yale, Mass General, and MKMG all said ALS. Mt Sinai didn't do any tests but just listened to my story and since I had gotten improvement with antibiotics, they didn't think it was ALS. That gave me hope anyway. I had 8 EMGs, 2 CAT scans, xrays, countless blood tests, spinal taps, a bone biopsy etc. can't remember everything. Nothing else showed up so they just said ALS.
Eventually, my breathing and body weakness progressed to the point where I could barely walk and needed a neck brace to hold up my head. We read about a treatment called IVIG and convinced a neurologist to try it although he didn't believe in lyme. Well, it worked, partially. I have been on IVIG, twice a month, for almost 3 years now. Its horribly expensive but luckily we have awesome insurance so I was very fortunate. I got better but was still having a hard time breathing at night.
In the meantime, my lyme doctor was still testing me for infections at specialty infectious disease labs and we finally got a positive result. I had a severe infection of a parasite called FL1953. Here is a link that describes it: FL1953 Protomyxzoa Rheumatica: An Introduction
Finally, an answer!!! The doctor that discovered this parasite believes that this is the cause of ALS. Seems simplistic, but guess what, I GOT BETTER. My lyme dr started me on Alinia, a strong anti malaria drug, and my breathing has improved dramatically. I also got a dental appliance for sleep apnea and now I don't even need the cpap at night.
So that's basically it. The combination of IVIG and Alinia are the magic combo that I believe has healed me. It makes me wonder how many others have been diagnosed with ALS that didn't pursue lyme treatment or weren't well enough to tolerate it. Insurance is a big obstacle too, they certainly don't want to pay for and I'm sure they penalize doctors who prescribe IVIG.
I'm not a healthcare professional, but I'm a professional patient. My opinion is that all autoimmune diseases have unknown causes. Lyme (and a myriad of coinfections) hide in our bodies and disguise themselves as healthy cells. Our immune system can't tell them difference between the parasites and the healthy cells so it attacks the healthy ones. Depending on your genes, that's the autoimmune disease you end up with.
I've watched 2 parents die of Alzheimer's and both had lyme. Their symptom progression was similar to my own except for the brain involvement. My brother just had a scary bout with guillain-barré syndrome and has recovered with IVIG as well.
This has been a giant game of chance. So many of my doctors have taken huge career risks in treating me and I am very grateful. Because of that, I am not able to share specific doctor's names but I can tell you what treatments have worked for me. And, yes, I can say I survived ALS. Keep fighting.