posted
I lived on LymeNet when my daughter was so very ill during her early teen years, 2007-2010. The support I received at times kept me going.
Then she had a miraculous remission, which lasted 6 years. They weren’t easy years, as I was still sick and she developed a number of difficult secondary mental issues, but she was out of bed, in school and living her life.
She graduated from college and even got married 1.5 years ago! She was slowly relapsing, but didn’t want to believe it.
So now here we are again, with her bedridden, tube-fed, seizures, POTS, anxiety, etc. requiring round the clock care again.
I am heartbroken. She and her husband are living with us and we are fighting to achieve remission again. I’m so worn down. I’m 61 and still fighting Lyme myself.
Our house has a mold issue and my husband has Alzheimer’s (or mold induced dementia). It’s a struggle every day to keep going, to keep her going, to hold onto a shred of hope when I am sick, broke and everyone in the family in leaning on me.
I don’t know if I still have it in me. I just want to sleep. I wanted so much for her. It’s so painful to be back here again. Thanks for listening.
(breaking up the post for easier reading for many here)
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
4Seasons--I am praying for your whole family.
May God bestow healing on you all.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
4-Seasons, I'm offering you my unlisted phone number by PM so that we can chat privately. Our daughter's story will give you hope to hold on, but I'm not free to post very much about her openly because she is an adult now and she insists on her medical privacy on the internet, for very good reasons.
It was the example of just a very few persons over the years which gave me the courage to hold on when I thought I couldn't cope any longer by myself, but I knew that they had triumphed against incredible health challenges.
Their examples gave me the courage to "hang on by my fingernails" when I was so worried and upset that I couldn't sleep at nights and when I had absolutely no one else to turn to at all for any kind of support. (Long story -- can't go into details here.)
I feel free posting this much openly though: She contracted Lyme disease at the age of 8, back in 1973, which was two years BEFORE Steere began his investigation of the outbreak of a mystery illness in Lyme, CT. It took 25 years to diagnose and then another 10 years to treat because they didn't really know what they were doing back then.
She missed all four years of HS on the homebound program and had to take the GED to graduate because home schooling was not a legal option back in those days.
We had to break up the family for two years, and she and I moved to another part of our state -- in West Texas where the air is dry and clear -- i.e., no molds, which did help a lot, but not nearly enough because we didn't know anything at all about Lyme disease back in those earlier years.
The good news is that she celebrated the tenth year of her recovery, without relapse, this last December -- after losing ~ 3.5 decades out of her life to undiagnosed illness. (Long story. I'm not free to post all of the details here.)
She is totally well now and has remained well since the age of 44, after having lost ~ 3.5 decades of her life!
I can't imagine how hard it must be for you to be ill yourself, too. We were luckier in that regard because when my husband contracted Lyme, he received prompt diagnosis and treatment, with no long-term sequelae, or else I cannot imagine how our family would have survived intact.
Nevertheless, I do have some ideas for treatment that I'm not free to post about openly because of copyright violation (and also because of our daughter’s insistence upon internet medical privacy) but which I can tell you about by phone.
That's why I'm offering you my unlisted phone number, in case you want to contact me privately to chat by phone. Just send me a PM to let me know if you are interested, and I'll reply by PM.
PS -- If anyone else is tempted to contact me privately, please understand that I'm working against a couple of VERY important deadlines and that it might be a couple of weeks (or longer) before I'll have any spare time to communicate with anyone else, either by PM or by phone.
Posts: 4563 | From TX | Registered: Sep 2002
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Please have someone check to see if you are eligible for some help from friends, the church, the city, county or state.
Nobody should have to provide so much for the family. You are entitled for some relief.
Maybe someone here has more ideas. Let us know how you are doing.
Sending my best thoughts and wishes,
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
4-Seasons, Upon re-reading your previous message, it sounds to me as if your family might have a genetic issue with celiac. The cheapest way to find out would be to do the cheek swab genetic test for $149 which EnteroLab offers. https://www.enterolab.com/StaticPages/TestInfo.aspx#gene
If anyone in your family is positive for any of the celiac genes, then an absolutely 100% strict gluten-free diet could make a huge difference for all of you.
The gluten-free (GF) lifestyle is a very steep learning curve at first, and inadvertent mistakes can be almost impossible to avoid. and setbacks can be extremely difficult to endure. But the payoff later will be well worth the time and effort and expense -- after you get past the initial adjustment period.
Upon re-reading your previous message, I'm almost certain that celiac and/or gluten intolerance could be a major factor in your family's difficulties!
There is a ton of free info on the internet about celiac and about how to avoid "hidden" gluten and "cross-contamination" with gluten which you'll need to learn about. If I had any spare time, I'd try to help you find them, but I trust that you'll be able to manage to do that yourself -- after you find out from the genetic celiac testing whether gluten might be an unsuspected problem for your family.
PS -- I'm editing to add that I'm convinced that Lyme toxins can act as "triggers" in activating celiac in someone who is genetically predisposed to it -- which is 40% of the American population.
This is probably why so many of the ILADS LLMDs are now insisting that their Lyme patients avoid gluten and casein (the protein in milk). I don't have time to explain what I know about the science behind this, so you'll just have to take it on blind faith that there is indeed a connection between celiac symptoms and Lyme symptoms, especially neurological symptoms.
I wish I had time to go into all of it, but that's another topic for another day -- one which deserves its own separate topic and subject heading.
PPS -- I'm editing yet again to add that the neurological symptoms of what I call "neuro-celiac" are so similar to the symptoms of "neuro-Lyme" that it's often very hard to discern when one condition stops and the next condition starts.
It's your daughter's neurological symptoms which caught my attention and which caused me to wonder if your family might be dealing with some form of either celiac and/or gluten intolerance, both of which have genetic components.
40% of the American population carries at least one celiac gene, but that doesn't mean that you automatically have celiac, or gluten intolerance, if your genetic test is positive for one of those genetic markers. It simply means that you are predisposed to celiac or gluten sensitivity, but a "triggering factor" is required to activate these genes and to trigger actual symptoms.
N.B. -- Do NOT assume that you don't have celiac simply because it didn't show up on the 23&Me genetic test. 23andMe tests for only just ONE of the celiac genes, but not for both of them, nor for any of the gluten intolerance/sensitivity/allergy genes either. That's why I recommend Enterolab because their test is thorough, but it is much cheaper than any other labs which specialize in genetic testing for celiac.
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I am so sorry to hear this. I unfortunately understand all too well. I am the same age as you and the timing is similar. I am ill myself as is our youngest. It’s so beyond my my comprehension that after so many years we are basically back to square one.
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