Comments on: 410 – Lyme & ALS

By: Rob

Rob — Fri, 13 Jan 2012 10:28:44 +0000

Birds, not deer, are the biggest cause for spreading the disease so rapidly.

By: Rob

Rob — Fri, 13 Jan 2012 10:25:00 +0000

Susan,
Lyme is such a random disease that it may be causing kidney problems. But, I would suspect that the meds are more the culprit. I know that more liquids can only excacerbate your torture, but do you drink cranberry juice regularly? It might help.
Rob

By: Susan

Susan — Fri, 13 Jan 2012 04:29:31 +0000

My kidneys now seem to be failing. Does Lyme very often cause kidney failure in people? I know it does in dogs.

Also, I was around lots of wild birds such as geese: Do they carry Lyme/have many ticks?

By: Susan

Susan — Fri, 13 Jan 2012 04:27:29 +0000

I have advanced Lyme and now my kidneys seem to be failing. Does Lyme very often attack the kidneys?

By: Rob

Rob — Thu, 12 Jan 2012 20:07:11 +0000

Laura,
It certainly resembles neurological Lyme. Even though 3 years have passed, if it is LD and you defer treatment, curing it with antibiotics becomes more difficult and he faces the possibility of it becoming chronic. I strongly suggest seeking out a Lyme Literate doctor. A proper Lyme test and clinical diagnosis are essential before dismissing LD altogether. And please be careful, most all doctors claim to be Lyme Literate even though today’s medical journals are just beginning to learn about the disease.
Good luck,
Rob

By: Laura Mattson

Laura Mattson — Thu, 12 Jan 2012 16:11:42 +0000

We were building our “Retirement House” in Thousand Oaks, California and about 3 (Could be 4) years ago my husband found a tick burrowing into his side, he removed it and as far as I know he was fine. Last January he was diagnosed with a inner ear problem, then he started having difficulties in swallowing and was diagnosis with a paralyzed vocal cord. Then they found a massive goiter pressing against his vocal cords so a total thyroidectomy was performed. Now he has been diagnosed with Motor Neron Disease, I might be grasping for straws here but do you think it may be possible that he has Lyme disease? I don’t even know if I am asking this question at the right website, if not could someone lead me in the right direction I would be forever grateful.

Thanks,
Laura

By: Kim W

Kim W — Mon, 09 Jan 2012 20:38:53 +0000

Thank you for your response to my post. We spent about 5 days in the hospital over Christmas break. My Mom went in with pneumonia on 12/25/11 and was discharged on 12/30/2011 during that time she recieved rocephin, azithromyicin, and vancomyicin. on or about the 3rd day we started to notice some very obivious changes! She was eating without choking, and she was also able to move both of her legs with out assistance!! We are home now and have gone without the anibiotics for 8 days and things have gone back to the way they were which is very dissapointing!! We are still looking into this further and I will keep you updated!! Thanks for the kind words!!

By: Rob

Rob — Fri, 23 Dec 2011 13:17:06 +0000

Jennifer,
It is an intense debate as to whether desperate patients want to believe they have LD, or that non Lyme Literate doctors have all the answers and a better treatment. After all, what causes ALS? Auto-immune problems? Heredity? That is a cop out.

My genius neurologist insisted that I had MS. A disease that I was told afflicts 2 in a million people. Lyme on the other hand has been detected in 40% of the population. Though, the majority of these people are stage-1 and have no symptoms.

My neurologist treated me with antifuerons, and during this treatment the Lyme spirochetes overcame my spinal chord and brain causing irreparable nerve damage.

I then gave up on this neurologist and spent the next 9 years on and off daily IV antibiotics. All my Lyme symptoms cleared up, but not the nerve damage.

The genius is now head of neurology at his medical center. The medical center has a few new buildings, and he lives in a wealthy community. My Lyme doctor lives a modest, highly stressed life, with hundreds of patients that other doctors won’t touch, and constantly worries that she’ll lose her medical license because she treats so many Lyme patients.

I know several chronic Lyme patients with very similar stories.

As much as scientists, doctors, the CDC, et al want all Lyme patients to have definitive symptoms and treatment, our physiology is complex and the bacterium is random and indiscriminate. The healing process is different for everyone.

Logically, the odds are much greater that an individual has contracted LD rather than MS or ALS.

Have a good holiday,
Rob

By: Jennifer

Jennifer — Fri, 23 Dec 2011 11:40:29 +0000

I understand it is very difficult to succumb to a terminal illness, I am so sorry for you and your family. What I have learned in the past two years through my brother in laws experience, first and foremost, if the Doctor is listed on the quack list, they are there for a reason, avoid them! Unfortunately my in laws fell into the trap. There is a Dr in CO that recognizes Lyme & ALS you may want to consider. Having the blot test alone won’t matter, the results are so inaccurate and depending on the Dr you are seeing will depend on the course of action. By no means are these tests conclusive but have found that lyme patients have certain things in common through these tests: CD57, PCR Test, Spinal fluid, MRI. My brother in law was convinced by the ‘best in the country’ he had lyme, NOT ALS. My in laws have footed the bill as they have the means to do so. He has done just about every controversial method and treatment along with over 18 months of antibiotics being pumped through a port. What was clear is his mind was never cloudy (as they say lyme patients have), his muscles had atrophy and the above tests all came back normal (relevant to lyme) and yet ‘the best’ still insisted it was lyme and he could ‘cure’him. Each month he declined further and further. Understand these tests, question these tests and don’t just listen to what the LLMD’s have to say. If you are unable to look at things objectively, find someone close that you respect that can help you do that. I have recently read a quote… “Acceptance does not mean defeat. Hope is an integral part of living and should go hand in hand with acceptance.” Wishing you the best through the journey ahead of you. Merry Christmas!

By: Kim W

Kim W — Thu, 22 Dec 2011 19:58:41 +0000

My Mother was diagnosed with ALS a little over 1 1/2 ago, and we had completly accepted this diagnosis until last Wed when for the first time since her diagnosis I came accross Lyme information. We went and seen he PCP Wed 12/21/11 and I presented her with all the research that I had found and she will begin testing my Mother for Lyme disease on January 19, 2012 due to her just having a steriod shot we are waiting 6 weeks to make sure we get accurate results. I would appreciat any and all advise that anyone has to offer as far as what the next step should be if in fact she does test positive. Thank you all and have a very Merry Christmas!!