lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i'm an oldie-a lot of experience with myself, my family and friends...support group people etc.
i am seeing something new and not sure how llmds are handling it.
i am seeing a lot of people who have probably had lyme and coinfections for 20 yrs or more...undiagnosed...BUT they have been told they had something else and have received many years of steroids, chemo, (even brain surgery) and other big time meds.
now the docs they have say: "we don't know."
many of these people have symptoms very much like lyme and coinfections...but should they start treatment like any other lymie? how have these meds made things worse-and will br b's guidelines and ilads protocols still make sense for them?
i know they need to get to real llmds - but many of the people i am seeing don't have insurance or money. some might educate themselves and use supps...
i don't know. i feel really bad about this. this disease and the response from the medical community really stinks.
i'd just like input from anyone who has had experience treating someone after lots of other treatments didn't work. i can't help but feel those treatments must have done a lot of complicated stuff to the body...and of course, then not healed it either.
thanks.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Good question. Don't know the answer. If treating late stage lyme possibly with coinfections is difficult, imagine the problems of dealing with people who have already been compromised by the wrong things done over a long period of time. Sheesh, talk about risky. And without an ironclad test diagnosing it.
If I were a doc, I would be very nervous about getting such patients. If I were a patient, I would want someone to try. But without any money, probably this will not be done anyway. In that case, I might wheel my chair down to Mexico and do some trial abx regimes to see if there was any response. This would require great strength of will and desire on the part of the patient. No one who is worn out from years of botched medicine will be able to do it.
Posts: 8430 | From Not available | Registered: Oct 2000
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For many years, we had been diagnosed with depression, fibromyalgia, CFS, even MS. We were given all sorts of anti-depressants, sleeping pills, and steroids of course.
Then I met a woman in my neighborhood who had Lyme and when she heard of my symptoms, she gave me the phone number for her LLMD and told me to get tested immediately.
SO - I personally think that they should pay to get tested, if possible, and start treatment. If they can't afford that, they should definitely at least try a good herbal regimen for Lyme.
Although the incorrect meds did make things worse, that doesn't mean we haven't improved. It just means that a lot of extra damage was done and it will take us longer than average to repair it (or at least stop it).
We are both currently following ILADS protocols and have both experienced improvement.
Unfortunately, there are some people who just won't listen. One of my mom's long-time friends has been severly ill, but she refuses to get tested for Lyme for some reason. I don't know why they wouldn't want to at least investigate it.
Posts: 220 | From central TX | Registered: Jun 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thanks to both of you...anyone else?
texaschaos-it won't take you long to realize LOTS of people won't listen. i've learned not to blame them or waste energy on them. it's certainly not their fault given what the mainstream medical folks tell them. also - its really scarey when you first find out about the lyme/coinfecton mess. it IS very sad and VERY hard when they are people you love dearly(adult children, spouses etc). but it doesn't help to worry over them. stress will make your response to treatment less positive.
i was a teacher in an inner city school for a long time-where the problems are HUGE. i learned to put my energy where it will do the most good...and i guess i've finally learned to do that with lyme too. take care of yourself and your mom. good luck!
lou-thanks as always. i appreciate your experienced input.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
If I were in that situation I would try a couple things...
write a letter to Dr. Fallon at the Chronic Lyme Research Center at Columbia University and descibe the extent of symptoms and treatments to date...ask to be taken into one of his studies at no cost. He is looking for tough chronic lyme cases to study.
Find an LLMD who takes insurance (mine does) or go to your regular doc and tell them you were bit by a tick and saw a bulls eye(little white lie)...see if you can at least get some cheap doxy for a year or so...ask them to send your blood to Stonybrook in long island...my insurance paid for this
Write to Pat Smith at the LDA and ask if there are any funds available for indigent patient care. They get lots of money and maybe if they don't have a fund set up already they should...I would contribute to it to help those in need.
Have your friend join or start a local lyme support group. Have fund raisers for care of those in need.
Wish I could think of more but this is making me so sad and angry...for G&^%-sakes, if it were cancer, people would come out of the woodwork to help....
-------------------- We are spiritual beings on a human journey...
posted
i'm positive my mother and uncle have lyme, but nobody will even listen to me. i'm the crazy one that complains all the time and there is nothing wrong with me. blah, blah, blah.
well crap i give up. you can't help people who don't want to be helped.
especially since my uncle's wife is an emergency room nurse and what she doesn't know ain't worth knowing........
heck with them. i get tired of trying to help. i've got myself to take care of......
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi LP,
My mom probably has had Lyme for about 30 years. After some initial symptoms, they seemed to go dormant for years, but resurfaced in spades after an auto accident. She had the typical story -- healthy all her life, then full of weird symptoms that doctors couldn't seem to identify or cure.
To make a long story short, she eventually did see an LLMD and start treatment. Herxed and everything. But she decided that she didn't want to go through with long-term treatment, and is having her PCP just treat her symptoms instead.
She's well into her seventies. She's entitled to live her life how she wants. She takes Lyrica for the nerve pain, antidepressants for mood, and meds to control her blood pressure. She reports she has developed a tremor, and has trouble holding things, but the PCP says it's not Parkinson's.
I know what it is, and so do you. But I can't insist that my mom spend her final years fighting herxes in the hopes of getting better. She lives alone, and with meds she can travel, and laugh. It works for her.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thanks for the input.
shaz-you're right about not necessarily treating the lyme at that age. my mom ended up with dementia from lyme and a lot of other stuff. i talked to fallon at a conference and he said with her being so fragile he wouldn't reccomend treatment. another doc who used to be on here agreed-said if it was him he wouldn't do the tx.
genevieve- sometimes i think of it the way you think about alcholics-if they are not ready to ask for help you just can't force them...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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quote:Originally posted by shazdancer: I know what it is, and so do you. But I can't insist that my mom spend her final years fighting herxes in the hopes of getting better.
The same thing happened to my mother. I knew when I was dxd that my mother was also infected. [and my father died of "Parkinson's".]
By the time, I found out about the lyme, my mother had already had 3 major strokes, suffered from some amount of dementia, and was in no shape to handle anything more.
She passed away last Christmas at the age of 81. I'm glad I didn't put her through the lyme treatment.
posted
I have a neice who most likely has lyme and co infections. She has been diagnosed with Behcet's disease. A disease that hits a different population than she is entirely. She has had massive amounts of steriods in the last year and is in a wheelchair with R A at the age of 25. She has put on 70 pounds from the steriods.
My sister (her mother) won't hear a word of Lyme, same reason as above poster. It is all in MY head, there is nothing wrong, we are making our selves sick, blah blah blah. I have had to let it go, but it breaks my heart to think that she could have treatment and possibly get better. She is 25 for G*d's sake.
She did see the Under our skin documentary trailer and it got her wondering again, but not enough.
Oh well, another relationship bites the dust.
Wizard
Posts: 252 | From USA | Registered: Sep 2003
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