Topic: Telling others that their disease may be lyme... Question.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I have a question.
How do you go about telling someone their family member may have lyme instead of MS or Parkinson's, or any other disease that is usually lyme and not whatever else they were diagnosed with in the beginning???
Though in both of the cases below I think it may be too late.
I know someone who's mother is probably too far gone now (I hate saying that) to be treated for lyme. This mother was diagnosed with MS at the age of 15 (SERIOUSLY, WHAT!?!?!) and now, presently, she's about 45 and has serious dementia and is pretty much comatose in bed. I've actually told the daughter about lyme and that that is most likely what this is due to the fact that the mother was diagnosed with MS at the age of 15 (she had lesions on an MRI at that age). That just.... screams lyme to me.
I don't think anyone can have MS at that young of an age, can they?! I've told her nearly four different times about how it's most likely lyme and she's told me over and over how they thought about it, but her mother's doc says it's definitely not lyme and that it wouldn't make those lesions on the brain, etc.
I think for this friend I've done all I could in giving her the information she needs about lyme. I feel that after telling someone so many times about something and they still don't want to listen, that's all you can do. I did my best in letting her know. -------
Now, I have a friend that I want to tell him that his dad probably has misdiagnosed Parkinson's and that it's most likely lyme.
I'm kind of dumbfounded though because he himself suffered from lyme for many years and so you'd think he'd realize there could be a huge possibility of what his dad has being lyme and NOT Parkinson's.
Also, his dad was diagnosed with Parkinson's by the time he was in his 20's. Again, isn't that EARLY? His dad is much older now and if this is lyme, he's been suffering with it for 40 or so years.
He's a new friend so I'm kind of hesistant to bring this up to him at all. I feel that it might not be my place.. or the right time for a *new* friend to be telling someone 'hey, your dad's diagnosis could be wrong!' (especially since this has been his dad's diagnosis since his 20's) I know many, many people would take that the wrong way and become offended or even very angry.
Any thoughts or ideas???
What would you do?
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Actually most people do get MS in their teens or young twenties. My husband's nephew has it and found out when he was 19.
He has responded well to MS treatment.
If it were my mother I would at least try antibiotic treatment. What could it hurt?
However not everyone diagnosed with MS has LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I think it's best to present an article or a book and put a tag on a passage that relates.
A link to a web site might be helpful, too.
I think it's important for us not to say it's this or that but to say that in our research we've come across many medical articles that highlight cases of those who had been previously dx with MS (or ALS, Parkinson's) and in many of those cases, after further evaluation, a lyme (or TBD) dx has come to light.
With treatment for lyme/TBD, many symptom improved for some patients.
It is important to emphasis that a LLMD will also evaluate for other chronic stealth infections. Lyme is not the only one.
I will post a wonderful collection of things to consider below - a list from Timaca.
Cpn is one of the most important ones to look at in addition to the typical TBD.
The key is that seeing a doctor who knows all about this can make the difference - a doctor who has seen thousands of patients from this spectrum of infections.
While the article below is about MS and lyme, it is informative concerning any neurological condition.
This discusses the differences between MS and lyme and various combinations - and then also, MS alone. This is relevant to other neurological conditions.
CONTROVERSIES IN NEUROBORRELIOSIS - Audrey Stein Goldings, M.D.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
The most important thing is to CONVEY HOPE. It can be devastating to consider some of these infections. Success stories are vital.
So, too, are names of great LLMDs whom your friend has the funds to see. It's a stake to the heart to find out all this and not have a way to see a doctor for the complete evaluation process.
You might also consider giving them copies of the books by Buhner and by Zhang as they can be very enlightening and empowering. And, as we hear more, information about the Bionic 880. You never know who just might have a relative who just might live near the clinic in Germany.
posted
I read an article in a local paper about someone who was having trouble getting their fair share of their inheritance from relatives.
The article said this person had severe anxiety and angoraphobia and could not leave the house.
I had those same symptoms for 5 months when I first presented with a bulls eye rash so I wrote the person who wrote the article and suggest the person the article was written about see a LLMD and get an Igenex test.
The author of the article passed on my email and said the person who had been having anxiety decided to go get tested. I have not heard back about the results of that test.
I also kept telling a friend that I thought they had LD.
They did not listen to me but when their ex boyfriend was finally diagnosed they got tested too and did have LD. They claimed they were in a bit of denial.
I would rather try and say something to people then not but I think in each situation it is good to use your intuition.
Some people will hear what you have to say and seek help and others will not. It does not hurt to try at least.
Years ago a neighbor had MS. She had super bad vertigo. Her husband had to carry her into the bathroom. I told her about a school that teaches people to heal themselves. She attended the school for a year and became well.
She returned to her doctors who told her they must have misdiagnosed the MS.
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adamm
Unregistered
posted
Everyone with a neurodegenerative disease should at least give
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I always preface my conversation or email by saying, "As your friend I would feel remiss if I didn't share this information with you. I hope you will take it in the way it is intended and at least read some of the information."
Some read at least some of the info, one actually got mad at me about it. I then had to go into detail about the reason I had offered it to her.
She and her young children have all been dx'd with Lupus.
All you can do is offer the information. It is up to them to consider it.
Some people are very attached to their dx's, I think because it took so long to find one they don't want to go through the entire process again.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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I have an Aunt that has been diganosed with everything and nothing and no one can find what's wrong with her, I am close with her and she knows what I am going through.
She lives in an infested area and has seen at least 5 ticks on her within the last year, I asked her to get tested more then once and her response is I was (western blot and elisa) and it was negative, I keep trying to explain that doesn't mean anything.
I will always keep trying to get her to see an LLMD and I will never stop, but I don't know if it will ever work. I have a hard enough time getting people to believe I have lyme when my western blot was +++.
I'm sure this doesn't help much, but I guess what I'm saying is it depends on how important this person is to you, and how openminded they are, if you think its worth it and can get through to them keep trying but don't stress yourself out over someone that will NEVER listen.
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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posted
You know, I have to say that I met a few friends on an MS board when my illness started about a year ago....one of them had some similar symptoms as I did and eventually got diagnosed with lyme.
I had a negative screening test come back...and so when my friend started contacting me about that it might be lyme, I wasn't convinced.
I had all neuro symptoms at that point and a lot of brain lesions. All my doctors were telling me that it COULDN'T be lyme...and a couple thought that it either was or would be MS. I had a lot of symptoms that the MS people had.
At the time I couldn't see the point in paying $200 more dollars for a test that I thought I had already run....She kept on me about it and I did finally get the Igenex test.
It was CDC positive and now I am SOOO much better after being treated for lyme. She is the one that told me about this board and a big reason that I am getting well.
THANKS JULIE... if you are reading this!!
Take it from a former skeptic, I am glad that she was "pushy" and took the time to send me information. I think we just want to spare others the misery that we have been through and it all comes from a good place.
posted
I have the same problem. I used to hike with a good friend and a small group of others, including her dad.
Her dad was in excellent health until he was caught in his mountain cabin during a fire about 5-6 years ago.
Long story to short, shortly after he discovered 3 ticks imbedded in his back and went to the ER to have them properly removed.
His health declined rapidly and now that I know Lyme symptoms - I feel he has been misdiagnosed as ALS. I sent my friend information on Lyme and urged her to get him tested when I discovered my daughter and I had Lyme 10 weeks ago.
She only writes me now. A little card, she sent me a magazine about a place we used to visit. Never acknowleges the info I sent her and never has inquired as to how we are feeling.
When I call - I get the answering machine. So I still have not spoken to her directly.
Mostly - I think the medical community is at fault for the current ill-will. People still doubt Lyme is in California.
Besides being "head-in-the-sand" unknowing, they also have each other's backs where something like misdiagnosis and Litigation may be concerned.
If you were me - about my friend's dad - what would you do now? Peedie
Posts: 641 | From So. CA | Registered: May 2008
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posted
You almost have to find stories about people that were diagnosed with ALS (and had all the same symptoms as your friend's dad)..and it turned out that they had lyme the whole time.
There are a was a physician on the Under Our Skin video with ALS, (Dave Martz). I am sure there are more examples.
It is difficult for some to go against what their doctor is saying to them. Even with a CDC positive test it was troublesome for me to walk away from the medical community here.
I am now getting better, but you only get to that point if you are brave enough to go against what all the doctor's around you are saying.
Something a little freaky,,, a few weeks ago, someone posted about one of those Diagnosis X shows with Brooke L.
That same morning my husband has a young client with MS and he finally asked her if she had ever been bit by a tick and she said yes. He told her about me and my whole experience.
He asked her how she got diagnosed and she said that she woke up numb from the waist down...JUST LIKE BROOKE did on that show.
She said she would ask her neurologist about lyme and he told her that they won't listen (same neuro that I have) and she would have to look into it herself. She is in college and said she would write her next paper on lyme disease.
I think he planted a seed and hopefully she will get a doctor to test her. It is just hard NOT to say something when it could be possibly life changing for someone.
I do understand that not all will listen. I have another friend like that. Her deal is "I'm not as BAD as you are".
I think you just have to get a story that is very similar to that person's experience. So that they can see that it is a possibility.
posted
You can lead a horse to water, but you cant make him drink...right?
Ive got a sister with lyme, both parents had the bullseye rash, Ive got lyme, another sister had lyme (bullseye rash), ...sounds like a family thing...possibly from famimly camping trips, yet I still have some other brothers and sisters believe their ailments aren't lyme.
Ive got a sister who has the worst symptoms, no known reasons, but still wont get tested for lyme.
In the end, all you can do is merely say, hey, have you ever been tested for lyme? If not, perhaps you could consider the western blot from Igenex, just to be sure.
And if they withdraw from the conversation, let them be. In time if they have enough doubts or pains, they may reconsider.
People must help themselves first...
Posts: 514 | From . | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Give them a copy of Under Our Skin, and tell them that investigating ILADS.Org and cross referencing their disease with Lyme on the internet is a good idea. Something like "Does Lyme cause MS?" etc. If you need help getting a copy, let me know.
And the comment regarding MS and Lyme Disease. It is my opinion that while Lyme is not the sole cause of MS, I do believe other infectious diseases -- likely bacterial, are responsible for the majority of cases.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Disturb me you are right, MS traditionally is diagnosed in people in their late 30's to 50. I was originally diagnosed with MS and I researched it thoroughly. In recent years they say that more and more young people, in their teens, are getting diagnosed.
They(MS Assoc.) even say they think there is a contagious element(viral) because of the number of spouses becoming ill with MS. It would be too much to hope for A BACTERIAL contagen...of course.
I know many people who have been told they have MS,Fibro,etc. I know how you feel. I look at it this way, if I mention it to them and give them some research then I have done my job. If they prefer to be spoon-fed their fate by a duck - then that's on them.
If I had a choice of dx, I certainly would rather look into Lyme versus believing a duck who says I have Lou Gehrigs and I have 5-6 years to live. The unconditional faith that some have in their ducks is scary.
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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