Lyme not ALS

My mom started having trouble with balance a couple of years ago. She has a bad leg from a car accident many years before. She started walking with a cane in 2012. She then progressed to walking with a walker. In May of 2013 she was on a scooter for most everything other than transfers.

My parents lived with me in Asheville, NC for 3 years. They moved back home to Florida last year. I came to visit in June and I couldn’t believe the deterioration in my mothers health.

She was steadily declining and by the end of June I had to take her to the ER as she couldn’t stand at all.

She ended up having a horrible UTI and a secondary infection throughout her body. (they never elaborated what that secondary infection might be) They put her on a high dose of Rocephin. She also had surgery on her neck for a compressed spinal cord.

After the Rocephin and surgery her speech was near perfect and she steadily improved. She had rehab and was even walking with a walker again. It was absolutely amazing.

Six weeks later (August 2013) she took a downhill turn and within a week she couldn’t walk again. She has steadily declined since. Her speech is slow, headaches, joint pain and does not have the ability to walk. She has to have assistance going to the restroom. (for transfers)

The neuro-surgeon that did her surgery said there was nothing more he could so and sent her to a regular neuro. That Neuro doctor did an EMG test. (she said it was brutal) He then told her she had ALS and would eventually be on a feeding tube and respirator.

On the second visit to that same Neuro I was able to go. I asked him why she improved over those six weeks. ALS does not present that way. You don’t get better ever with ALS. He said he did not know and that I needed to take her to the Mayo clinic. Really I felt like he was trying to get rid of us.

Mayo was booked and not accepting new patients. I decided on the 2nd best ALS clinic, USF. We saw a doctor there. She looked at mom about 5 minutes and said yes I think she has ALS. I again asked about why she thought she improved in those 6 weeks. Again, the answer was “I’m not sure about that.”

The ALS association is an amazing organization. We have a wonderful representative that has helped with lots of information. She is actually the person that got us an appointment at the Mayo Clinic in Jacksonville.

It was there we then saw our third Neuro doctor. By this time I had been doing some research and found the ALS/Lyme link. Her symptoms were so much more Lyme. It was then I really knew she had Lyme. They did another EMG test, a bunch of blood work and a Lyme (ELISA) test. (the Lyme test only because I asked for it) The Lyme test came back negative and once again we were told ALS. That doctor did tell me that although he is diagnosing ALS he does not attribute all of her symptoms to that. OKAY??? Then what are you attributing her symptoms to? I did not get much of an answer to this question other than arthritis. We were sent home empty handed. They said the could manage her decline with equipment but that was it.

By this time my mom was feeling defeated and pretty depressed. I still knew in my heart that it was Lyme. I had been reading these boards and posts from people. It gave me hope and the perseverance to continue searching for someone to help.

I got information from these boards about a doctor in Orlando. We went yesterday and for the first time someone listened to us. I cried in the office. He believes she has Lyme and has had it for a couple of years. The office and doctor were amazing!!!! He believes she improved those six weeks due to high doses of Rocephin.

She starts IV antibiotics (Rocephin) on Monday. I can’t express the joy and most importantly hope we now feel. I also wanted to say thank you to everyone on this board. I found valuable information and I’m sure will continue to find information in the months/years to come.

I know we have a long road ahead of us but we will continue on, one day at a time.

Thanks for reading my (my mom's story). I look forward getting to know everyone.

Melissa

Hi Pathways!
Welcome to our community officially!! I'm so glad that you found us!!

What a wonderful post!! And a big congratulations to you for your insistence that the diagnosis didn't fit! Many of us here have gone through that.

And thank you so much for your kind words about this forum and how it has helped - what a wonderful thing!!! We too look forward to getting to know you better!!

Please be sure that your Mom is taking plenty of probiotics (30,000 - 50,000 a day or more if needed) and is detoxing to help deal with all of the extra toxins being created as the bacteria is being killed. She should also be checked for other infections and viruses that she may have gotten at the same time as she was infected with Lyme disease.

As Sooverthis has said, we have a lot of really important information in our "New to Lyme? Start here!" thread that will be beneficial to your Mom's healing! There are symptom lists, tips and hints for detoxing, and lots of helpful links and pdf's.

We also have a wonderful member here who's husband was first diagnosed with ALS as well, her user name is Cat53. They are using alternative methods to heal, but you would still have some things in common, I'm sure!

Welcome to our group Melissa. I get such a lift when I hear good news like this. As Traveler pointed out, my husband was also diagnosed with ALS. Even though he can't function well with his arms and hands, the progression of his symptoms stopped sometime during 4 months of alternative treatment. He only used an antibiotic for one month in the spring of last year just to see if it would help him with the damage that had been done. He didn't like it so he stopped. His treatments were with light/energy frequencies. Another member - who hasn't been on for awhile now- also was diagnosed with ALS and followed the same protocol for one of her treatments. I am in touch with her and her symptoms have also stopped progressing. You can also write to me by clicking on my user name. My profile will come up with my email address.
Trav, are you trying to make me blush! LOL A cyber hug for you!

I would like to add...please consider mHBOT (mild hyperbaric oxygen treatment) for neurological Lyme...it literally gave me my life back after 8 years of extreme illness (5 years homebound) with little hope of recovery...

It is the only known treatment that promotes release of stem cells and healing of neural tissue, as well as killing pathogens, normalizing the immune response, promoting angiogenesis, reducing inflammation and hypoperfusion, increasing cellular metabolism, supporting organs of detoxification, healing gut tissue, treating PTSD...shall I go on???

To start learning about mHBOT, I usually recommend that people check out "The Oxygen Revolution", by Dr. Paul Harch...he has been researching mHBOT for over 20 years, and includes before and after brain SPECT scans in his book and on his website (hbot.com) that are impressive.

Although the book/website illustrates the benefits of mHBOT for many conditions, it is relevant to Lyme, as many chronic illnesses, including Lyme, share "common denominators"...

You are amazing to be able to help your mom in this way and to have the insight to know that this might be the answer. I suffered from UTI's for years along with other infections in my body due to Lyme but never had any doctor make the connection for me or help me. I suffered for a long time. These UTI infections and other problems are due in part to the fact that when a person's immune system has a priority such as a lyme infection, it focuses on that, and then cannot put all it's attention on other things going on in the body. This was happening with me. Therefore I suffered from UTI's a lot and other infections due to the fact that my body was too absorbed with dealing with the Lyme disease and that was my body's focus. My body was unable to them fight off infections such as urinary tract infections and other infections such as yeast and I was going to the doctors all the time with these symptoms and others as well. There is a Nobel prize winner and I can't remember his name but I swear I am going to find it out and post his research on this site but the basis of his research was to demonstrate that all autoimmune system diseases start from a bacterial infection of some kind. (such as borrelia burgdofferi --lyme and i spelled that wrong I am sure) He found that all people with an autoimmune system disease were primarily suffering from one of two bacteria's that caused the body to go off track. One of the bacteria's he named in this reserach was lyme bacteria. He won the Nobel prize for his research.

Thanks Phoiph, I don't want to take the focus off of Pathway too much so write to me again when you get a chance. I would like to know more about how people can access the machines without spending a fortune. I am always happy to hear when someone finds success in treatment though so many thanks for sharing with us.

Thanks Garden. I would really appreciate it if you would find out if Toby could try out the hyperbaric chambers. Send me the info. when you can. Also, we are going to try to go to the Lyme support group this weekend. I'll let you if we our plans change.

I just wanted to say thank you to everyone for the encouraging words. I will look into everything people have mentioned.

I took her yesterday for the second IV antibiotic round. She seems to be tolerating it and her outlook is great.

The main thing I'm troubled by is the reaction from family members. They are all so hesitant to accept the possibility of lyme. I swear some people believe anything a doctor says. Like all doctors are created equal.
I guess at one time I was probably like that as well but after the journey I've been on with her that statement is far from true. Doctors PRACTICE medicine and they are not all equal.

Thanks again! It's nice to have a network of people that understand! I will update soon!

Melissa