TOUCHED BY LYME: When loved ones won't heed our hard-earned advice
What should you do when you think a loved one might have Lyme disease, but they just don't want to hear about it?
After I recently blogged about Dr. Dave Martz, and how Lyme treatment turned around what had been an ALS death sentence, I received the following message from one of my readers:
Thank you for this info–I have a friend who is quickly going downhill after being diagnosed with ALS, and as I have done in the past, I am sending him this info, but what is so frustrating is that he just seems to keep avoiding anything I send him (even after knowing what I went through to get a diagnosis), and seems to be resigned to his destiny, and I am running out of ways to get him involved in a simple test for tick-related infections, to at least rule it out. It would be heartbreaking to find out that his fate could have been avoided.
This is a subject I run into a lot in both my personal life and my Lyme advocacy work. I don’t have a perfect answer for this reader, but here’s the response I sent him.
I’ve actually been on both sides of this. When my daughter first became seriously ill with what turned out to Lyme (but we didn’t know that) I can’t tell you how many people gave me information about alternative doctors, acupuncturists, homeopaths, etc, that they thought we should drop everything to see. I, however, was not receptive to their suggestions, and found it annoying to say the least. (Ironically, years later, many of those alternative treatments played a major role in helping my daughter recover her health. But we had to find them in our own time.)
Which brings us to ALS. Alas, this condition doesn’t leave much time for examining alternatives, does it? You obviously love your friend and want to help him. If you believe in prayer, I imagine you are doing plenty of that on his behalf. In my opinion, beyond that, the best you can do is pass along the information, and let him know that you will continue to be supportive whether or not he chooses to act on this advice. In the end, it’s his life and he deserves respect for making the choices that seem appropriate to him.
So, readers? Anybody else have thoughts to contribute on this subject? Enter your comment below or drop me an email at email@example.com.
- March 16, 2010 at 11:14 pm
I feel very encouraged that other support groups dealing with other diagnosis are starting to listen. I was diagnosed in 2008 with MSA. It is said that MSA kills within 6-10 years from onset…2009 my Lyme diagnosis came about…since then I continue to stay in contact with the not only folks in the MSA society but also the Parkinson's Society as well. My goal is to reach these folks and hopefully convince them to get tested. I am sure when they see my posts on their forums they roll their eyes and say "Oh no here we go again…more Lyme info!" Recently I am seeing more and more where the MSA folks are telling their people to check out my blog and to seek Lyme information! This is huge progress for not only the Parkinson plus societies but also for us Lyme sufferers to! The more people that hear us and recognize Lyme is real Woo Hoo for us! Woo Hoo for them too! I carry my CALDA brochures and give them out whenever I can. I was at the dentist the other day and handed them out all over the office. Only to have my dentist come in and say "Wow, I never realized Lyme was such a serious disease!" Just think if each of us informed someone new every month! What a difference we can make!
I never would have thought I would be taking all the antibiotics and supplements I take each day! Before Lyme I struggled to remember to take my Vitamin D and/or C! Now I am setting alarm reminders and have a check-off sheet with all my meds and sups on it so I don't miss any! Am I any better than a year ago? I am improving, slowly…MSA patients don't improve! So even a little improvement is a huge success; no matter how long it takes!
- November 22, 2014 at 10:06 am
my brother was dx with Msa, just found out he has lymes and Bartonella. We can’t find a lymes dr. to treat him because of the severe neurological symptoms. Do you have any recommendations?
thanks for your help
- November 19, 2015 at 8:33 pm
A friend of mine was diagnosed with MSA. He was directed to me, I have lyme and a huge advocate for Lyme… I get at least 20 calls per month regarding people sick and are looking for answers.
My friend is now seeing an llnd in Vancouver BC. Canada. If u would like info pls contact me
- March 17, 2010 at 8:46 am
Maye we need to understand and respect the mindset of the person and work with that.
Like they respect a certain kind of authority and not others, so to find someone to deliver the message whom they respect as an authority.
People usually trust their doctor. It can be very hard to take in info that contradicts their doctor. It requires a paradigm shift for someone to take in that their doctor might not be correct. Believing the doctor makes them feel safe, and now we're asking them to give up that feeling of safety.
They may have a certain belief system that we need to work with – that they need info to be delivered in a certain way.
Maybe we need to find out more what would motivate them to hear what we have to say.
Maybe they want to figure things out themself, do the research themself.
Maybe they need more time, a slower pace, more room in which to digest some new information.
Maybe we have to realize that people change when they're ready to, and not before.
And there may be more reasons why people don't want to hear. I think it's important to understand these reasons.
- February 4, 2016 at 2:54 pm
I was diagnosed with Lyme in 2011 after going to a myriad of doctors who could not tell me why I was so sick. I had no bullseye rash. I had many symptoms and knew I would not last if I did not find help. I knew I was in a fight for my life so I began ordering antibiotics from the Internet and taking herbals that relieved my symptoms. Finally, on the advise of my daughter, I visited a doctor in another city who tested me for Lyme and I tested positive. I have good days and bad days and I sometimes wonder when all of this will be behind me. But I know I’m in the fight for my life and quitting is not an option! Together we can change the medical landscape in this country if we could band together and demand change. People are suffering and dying needlessly and our Politicians don’t seem to notice. A change must come! If I had been treated when my symptoms first appeared, my life would be on a different projectory.
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