Toby's visit to ALS clinic

Hello everyone, I haven't posted for awhile because I have been so busy dealing with financial, medical, and household issues, but I do try to look at posts before retiring in the evening. Sometimes I want to respond to some I read, but since I am so tired in the evening, I can't get myself to do it. It saddens me to read what people are doing through. At least I feel a connection when reading the posts.
As some of you know, Toby had a brain injury last Sept. He is slowly recovering from that. I am worried though because we went to the ALS clinic in Portland yesterday to see the team of doctors and therapists. He had a pulmonary function test and his lungs are functioning at 58% capacity. They want to instill a PEG - forget what the acronym is - just in case he needs it later. For those who don't know, it's a feeding tube that would give him nutrition "when" he can't eat anymore. It would be inserted in the stomach and left there when it's necessary to be used. They don't want to do it when a patient is down to 50% lung capacity because of breathing complications when given an anesthetic. Toby breathes okay so he is not convinced he needs to have it done. I am very worried about the pulmonary test results. I still think Lyme/ coinfection(s) is the cause or is connected to his ALS symptoms. We haven't seen a doctor regarding Lyme since his injury. There aren't any LLMD's in the Portland, Oregon area and at the moment he only has full coverage with VA. He was put on Medicare last year due to his disability, but I need to find a supplemental Medicare plans to cover the other 20 %.....since Medicare only covers 80%.
Garden, maybe Toby should see the doctor you mentioned or we should travel farther away to see one who knows how to treat people who are diagnosed with ALS and tested positive for Lyme...as Toby was.
If anyone has any recommendations or any advice as to how to continue, I would appreciate your input. People diagnosed with ALS don't have the time to experiment so much. Maybe someone knows a good doctor who has treated people with both Lyme/ALS.

Thank you for your time, Cathy

I'm sorry to hear about what you are going through, you and your husband are very strong people. On the ALS side, there is a potentially promising drug called GM6, by Genervon. It's only in phase 2 but they just petitioned the FDA to release it immediately to all ALS patients, but the decision hasn't come out yet. It should be any day. Good luck to you

Girlie, what state is he in so Cathy will have that info. when she gets back on. It has been a long time since I watched the documentary.

Oh darn happyjo.

I will look at the utube video again and see if it mentions if he's still got a practice.

I am so sorry for what you are going through. I would try to get a doc to give him some antibiotics that work for lyme and see if there is any improvement, if you didn't go down this road already. I think it's worth a shot and that would be my approach at this point.

My son got very ill last year and started to have seizures. The docs mistakenly diagnosed him with Epilepsy. He didn't respond to Trileptal and in fact he got worse, he could not walk at times even to go to the bathroom. He got amox for a sinus infection and then for a ear infection and miraculously his seizures stopped. So doctors don't always know everything. THere is an MD that was also diagnosed with ALS and after treating for Lyme with IV abx, he recovered and is now part of ILADS. But I see you have been on the forum for a while and you probably know this.

My point is, don't give up hope! Explore all options! If you didn't yet get Toby some abx good to treat lyme, I would try to get that and see what happens. My son was so sick last year and there were days that we really thought he would die, but he is 80% better already!

Hugs and prayers

Hi all, I am sorry it has taken me so long to get back to you. We have had various issues to tend to. Right after I wrote, I got the news that my aunt had passed on and it seems like there is always something I need to get done. I probably should have waited a week or so to write, but I was so depressed over the clinical visit and I felt the need to connect. Thank you so much for replying to my letter. You are all so kind.
Garden, I probably will give you a call sometime this week. I really don't know which way to go. I haven't had a chance to get to my email so I will try to check today or tomorrow. Toby really wants to go back to CS so we are going to do that this week.
Girlie, thanks for checking for me. I saw "Under our Skin" so I do know about Dr. Martz. It's amazing and encouraging to read about people who survive this diagnosis.

Louise, Genervon is mentioned on an ALS forum I check now and then. The doctors didn't mention it to us so I wonder what came of that. Thank you for bringing it up. I am wondering about LDN that people on this forum occasionally mention.

Trav, Toby is on disability and he can't work anymore. It certainly does help with finances. You are so sweet. I miss the forum when I don't get a chance to get on and read people's posts.

Simela, Toby took only one month of Doxy back in 2013 and didn't like how he felt. I doubt if any mainstream doctor would prescribe the antibiotics that are needed for his condition. We don't have an LLMD in our area. I certainly agree with you. They certainly don't know much about Lyme and coinfections, that's for sure.

Happyjo, So....that info. is a clinic that Dr. Martz was treated at? I know he is from Colorado. I will definitely check that out. Thank you so much.....
and thank you Dancingbear for your support too! ((Hugs to all!))

If you ever consider using HBOT, please email me as I have a contact person for you! She healed using only mild HBOT.

Otherwise, please let us know how you both are doing as you can!!!

((((((((((HUGS))))))))))

Thanks Trav, You are so thoughtful. I believe I know who you are talking about and yes I have spoken to her. She is a lovely person and gave me some valuable info.

Garden, Toby lost his uncle the week before......crazy huh. I will try to call when I can. There is always so much going on with us and family. We went to CS on Tues. for the afternoon. They have a biomat now on the Light Bed which is pretty cool. We are going to go once a week. Thank you so much for saying you would give up your appts. for Toby. That means so much to us, but the problem lies with insurance. I will let you know more when I write to you.

I'm so very sorry for all that has befallen you and Toby lately!! Please give Toby our deepest sympathies. We care a lot about both of you!!

I hope that you are finally with a doctor that can help Toby recover.

Thank you Lovemychildren, I am aware of Dr. Martz's story. He is also featured in "Under my Skin". He oversees treatment at the clinic he was treated for in Colorado Springs. His story gave me hope when I found out about him a couple of years ago. I really appreciate it - whether I know the info. or not - when members share their what they know. There are times when I have forgotten about a treatment and someone brings it up and I say "That's right...I forgot about that." (:

Trav and Garden, Thank you for your continual support and kind words. It really does help. Toby is with VA medical and has Medicare (automatically enrolled because of his disability). I would like to find a doctor who treats Lyme/coinfections and takes Medicare. Garden, The light frequencies are on the sides of the bed so I don't think that applies. I'm sure Scott knows what he is doing. ((Hugs)).