momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Quick story...A friend/client of mine has had problems for awhile. Local doctor suspected MS...sent him to Mayo for testing and dx.
Has two lesions on his spine...I do not think he has any on his brain.
Talked with his wife and suggested LD...she knows what I have been through with my daughter and all the shenanigans with dr.s etc...she actually has a pretty personal look into our lives.
Said he has been tested twice for Lyme, and also said she has to trust the doctors...I surely understand that statement...and I suppose they are scared, too.
I let it drop.
I let it drop with her, but I cannot let it go with me.
Is there anything about MS that is definatively different than LD?
He was very fatigued for months...had a one side of his face go numb in the 1980's...right hand lost some function (recently)... function returned but not when he closes his eyes...I mean when he is given a command to squeeze his hand into a fist or something like that with his eyes closed, his hand does not perform...with his eyes open he is able to do the command.
I don't know...bothers me horribly...I know it is pointless to keep pushing and I will not.
Hoping for some direction...hope the Lord opens a door or something for me...or whatever.
It scares the beegeebies out of me.
How do you know it is MS for sure, I wonder?
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
I don't know enough about MS to offer a suggestion, but I have a friend having problems for years that was diagnosed with MS. After years of failed treatment and diagnoses of MS, fibromyalgia, CFS, and numerous other ailments she recently tested positive for Lyme. Being told her MS was rapidly advancing and given a short time to live in the mean time. Of course she was given the standard 20 day doxy treatment by her uninformed doctor, just after that her MS miraculously stopped advancing.
Posts: 80 | From US | Registered: Aug 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thats one thing...the problem with the ms dx is the tx makes lyme worse and doesnt really seem to do much for the ms
but doing lyme tx first if you herx and or end up getting well then you have a good idea it is lyme
the other think i have learned to do is there is a pamphlet from LDA -not sure which one_ but it says on it very clearly "there is NO test that can tell you whether you have lyme or not"
ok-wait a minute-it doesnt say it in those words...but that is the meaning-i dont have one in front of me right now
i give those out and show the place it says that
ppl often walk away but later they get it-sometimes
i know the feeling you are having...many on here know i am going thru a brother being very sick with lyme and refusing tx cuz he has no money and he says the docs dont know what they are doing anywy. it affects his thinking and i feel like i am walking on eggs whenever i am with him. i often see sx but have learned to keep my mouth shut cuz it makes him angry. today he asked me if i smelled smoke. i didnt . he said he often thinks he smells things when they are not there. i was able to tell him it was common for lyme patients to smell or hear or even see things that are not there. this time he seemed to accept it. i never know how he will take something.
but i too have to let it go as much as i can for my own sake
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I can relate to you lpkayak...my daughter fought the doctors and me for years. A nightmare. So sorry, I know how you feel.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
People who have had it this long are very much harder to treat. So, if they wait until their cases are nearly impossible, it is not doing any favor to lyme docs to send them there.
This has come up frequently on lymenet over the years. We want to help those who may have been misdiagnosed and who are suffering. But there is only so much you can do if people want to trust their doctors. Understandable, but it can have terrible consequences.
Very hard to look on such situations but there are consequences to misplaced trust and in the end, those people must live with them. We can't save everyone.
Posts: 8430 | From Not available | Registered: Oct 2000
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
lou-i like what you said
very true. also-some of them would be better off starteing to knock the load down slowly with herbs..at this stage herxes can be awful
when we found out my mom had had lyme for many yrs two of the top llmds told me tx would be inhumane for her
she was so fragile and she would not understand about getting worse b4 you get better
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Tricky Tickey
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Member # 26546
posted
I know how you feel here. I had a co-worker who has a sick child. He was bitten by several ticks a couple of years ago. He got sick soon after that and they took him to the doctor, who I think she said, told them he had a flu of some type or something. They told him about the tick bites, but it was ignored.
Since then, he gets fevers about once per month, has trouble in school, complains of his knees hurting. He's tired all the time and she said he's just 'not himself' anymore. I've given her all the information I have, discussed in depth the importance of seeing a LLMD. His last visit to the doctor was to AR Children's, which is the best childrens hospital in the south. They told them there is nothing wrong with him.
She even asked about a Lyme test, but was told he can't have it, no Lyme around here (right) I gave her a copy of Under Our Skin. I explained to her that she must sit down and watch with her husband to fully understand. She believed me and also believes he probably has Lyme, but as far as I know, she's never followed up with anything.
I worry about the child all the time. He was only 7, I'm tempted to contact her one last time, what would it hurt?
So I relate to how you feel here when you have a gut feeling about something and all the puzzle pieces fall into place, yet you cannot seem to get someone out of the denial phase into the action phase.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I know Garbagedump...I ALWAYS believed my daughter had LD....I was the one who had to convince the doctors...I was the one that did the research...so it is very hard for me to understand how many people just roll over and take these lies or half-truths doctors tell them.
I have done EVERYTHING in my power to get my daughter well...why isn't everyone like this?
I have researched, and read and pondered and prayed for guidance...for years and years and although my daughter is so very much better, I will still not let my guard down and continue to care for her.
So how can people just take it?
I guess that is what is most upsetting...the acceptance from people that their doctor/s are the end-all...and they can't possibly be wrong.
Sometimes we put lots and lots of effort into trying to show and educate others and so we have a stake in the outcome...it becomes personal.
I just have to let it go.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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momindeep
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Member # 7618
posted
Thanks TuTu. I will read it all.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
garby-i was a teacher in a very endemic area and for years i saw kids who i knew had lyme but i was forbidden to say much of anything. def not "LYME" cuz i wasnt a doc
it broke my heart-i had to get very "hard" and put my energy into helping myself, my kids and ppl who would listen or ask me for help
that was probably the worst part of my job
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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I gave her a copy of Under Our Skin. I explained to her that she must sit down and watch with her husband to fully understand. She believed me and also believes he probably has Lyme, but as far as I know, she's never followed up with anything. 
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