Conquering MS

Dec 22, 2009

Its much easier if I just right a blog to fill everyone in.

I wish there were easy answers, please know that we are trying everything we can to get Michael well.

Yesterday Michael had an appointment with his doctor, Dr Talty. She has many Lyme patients and is the local authority on Lyme disease. She is also a very open minded integrative doctor, she knows a lot about natural and alternative healing, but she is not afraid to recommend drugs as needed. We feel very lucky to have a great doctor so close to home, and Michael is good hands with her.

Recap:
Michael was diagnosed with Multiple Sclerosis 12 years ago, at that time he was tested to rule out Lyme, but unless the exposure had been with in the last 4 weeks of testing, standard Western Blot tests will not find Lyme, his test came back negative at that time. We are thinking now that this MS may all be due to Lyme disease, its a new road we are trying for him and I will explain the reasons why later in this blog.

Recent:
He started to have a really bad neurological event On Dec 5th 2009, by Dec 9th he was much worse. He had not had any major attacks for over 2 years. This has by far been the worst attack he has ever had. He is not in any condition to be left alone right now. His legs are so weak that he has trouble transferring in and out of his wheel chair, he has either had pain, numbness, or pins and needles from head to toes; hands are weak and numb, arms are weak... his core and stomach muscles are weak, and he feels the “MS hug” like a steel belt around him... splitting head aches, hates to have anything touch his skin, having hot and cold sweats. Etc... No “brain fog” like some Lymies and MS patients report, he is, unfortunately, acutely aware of everything.

We have been going on the hope that this is a herxheimer reaction to the Lyme die off. But after 2 weeks of it with no real improvement, I got more worried and I still am, but the appointment with the doctor helped us to relax a bit, for now anyway. She said this is a herx reaction, classic, and she has seen it a lot. She talked to another authority on the subject too, Dr Martz, who is in the movie about Lyme “Under our skin”. Dr Martz had been diagnosed with ALS, and it was in fact Lyme. Dr Martz recommended that the proper treatment for long time neurological Lyme (as it appears Michael has) is to take a very slow approach to getting rid of the Lyme. Treating Lyme is a long hard road.

Stem cell treatments will be critical for him to have this year. While stem cells wont cure what is causing the MS, it will help to repair the damage and boost his immune system. The sooner he can get stem cells, the better his recovery will be from the recent attack.

Ethical Stem cells
What is important to note here is the type of stem cells we are talking about. The stem cell treatments he is needing are derived from ethical sources and are not embryonic. Embryonic stem cell are too prolific and not recommended for treating MS. The stems cell he is needing are from umbilical cord blood from live births, or those derived from his own bone marrow or fat tissue.

In the Summer of 2007 he did get stem cell treatments and was given 3 vials of stem cells in an iv drip, we had to go to Mexico to have them administered. He also had a bone marrow transplant at that time to utilize his own adult stem cells (detail on his site www.conqueringms.org) We had to pay for all of this out of pocket (on credit), and we were able to eventually able to raise most of that money through various forms of fundraising. Thank you to EVERYONE who helped us! This treatment DID help him to make his immune system stronger, and recover some of his abilities. And his health remained pretty steady, with no exacerbation until he had back surgery in June.

But we are thinking now that he is needing stem cells administered directly into his spinal cord, to get the stem cells across the blood brain barrier to heal the lesions and inflammation, and to do this before the damage is permanent.

Back Surgery and why we now think Lyme
After having stem cell treatments the 1st time, we knew the next step had to be getting his sciatic nerve decompressed, but it was very difficult to find a surgeon able or willing to work on him since he had an MS diagnosis. Some purposed to do nothing, others wanted to fillet him like a fish. Eventually we found the perfect surgeon for him at Stanford (Dr Mindea) and his surgery only took 1 hour and 10 minutes. He has had great success from the surgery itself, with no regrets. He had been in horrid pain for years, and after seeing the compression on that nerve the doctor doesn't know how he had been living in that kind of pain.

A week after the surgery he had a neurological event, his tongue went numb. The surgery did not seem so stressful to have caused something like this. So we called Dr Talty. She said she had seen this symptom before and it directly correlates with Lyme disease. And since he had been on strong iv antibiotics during and right after the surgery, this most likely riled up the Lyme because it hides out in nerves, and these was a nerve directed antibiotic.

Also when he was originally being diagnosed back in 1997, he had his cerebral spinal fluid tested for oligoclonal banding, it shows up in 80% to 90% of people diagnosed with MS, and he did not have it. He had a Lyme test back then too, it came back negative, but Standard Western Blot Tests aren't very accurate and will only show Lyme if one had been exposed with in 4 weeks of testing. We had also cut and gathered all our own fire wood in the Sierra for many years. He had what seemed to be a bite and rash in 1997, but it was not a “bulls eye” rash. In 2006 he had a “live blood cell” analysis in Reno, and they saw some kind of spirochete, it may have been Lyme they saw. Eventually he did get tested for Lyme through Igenix and he tested positive for having been exposed to Lyme. At that time, Dr Talty didn't want to tackle the Lyme, because he was doing pretty well and the Lyme was quiet. He was also needing to have his horrid back pain addressed before we could move forward to the next step to his wellness.

After having the back surgery last June, and then the neurological attack 7 days later. This helped to confirm the Lyme as a likely cause of what ails him. And since he did have such a harsh reaction to the antibiotic, his doctor did not want to tackle the Lyme until he recovered from the surgery. She said she wanted to wait 3 month before starting anything, until he rebuilt some of his strength. After a couple of months, with Dr Talty's consideration, she gave him the go ahead to start taking herbs for the Lyme. He started slowly with low does of a TOA free cats claw called Samento. He started to respond fairly quickly to the herbal antibiotics, with cycles of herxing as many Lyme patients report. Eventually by Nov 10th he worked his way up to the full recommend dose of 20 drops 2 times daily the next week was the best week I had seen him have for a LONG time. Then December 5th, he got hit hard, like I expressed at the beginning of this blog. He has still not recovered.

He is doing everything he can to be well, I have never seen anyone so dedicated and diligent.

Please keep your prayers coming, and donations too. We want to be ready to get him the help he is needing as soon as possible. Thank you for helping on his journey to wellness.

--Mrs. Rebecca Swift