Lizzie in Ma Posted November 7, 2012 Share Posted November 7, 2012 This has been the most difficult time of her life. I have to be grateful for WTM schooling year round through 8th grade right now and her internship for credit because it pretty much put her a year ahead credit wise for high school. She lost most of last year and has been unable to do much so far this year as well. The good news is that if she takes this year and her senior year to finish the work she has at present, she will still have 8 credits more than she needs to graduate. Small mercies. (background, she has had Lyme for about 6 years before we got the diagnosis) Her health had a small upswing over the summer after 6 months of heavy duty Lyme meds but then we had to pull her off all meds and deal with the damage they caused to her stomach and intestines. We are, right this minute, pretty much back to square one. She has unrelenting headaches, stabbing pains, ulcers from the meds, nausea, vertigo, and overall body pain not to mention fatigue. Her memory is a disaster, her cognitive issues and brain fog are a huge part of why school is a total wash. She also has auditory sensory issues. Having an "invisible disease" is hugely difficult for anyone let alone a teen. Her friends don't understand and haven't been very nice. In fact, I am pretty upset with most of them. We went in yesterday for another PT evaluation, they do them every 8 sessions. What a blessing, what a day, what a revelation. Her amazing PT loves her and admires her strength but said enough is enough. She is calling our primary and telling her that her recommendation is to go to a specialist in chronic pain and illness and work on the whole mind/body to get her better including a therapist she knows who understands this sort of thing. I am so grateful that someone finally realized how desperate this kid is right now. How hopeless she has been feeling and how much she has been dealing with all this time. Never mind adding in the traumatic loss of her beloved aunt last month. I am just sad that our dr., to whom she has told flat out how depressed she has been and about her anxiety issues and panic attacks, has never once said "let's address this". I am sad that her specialist in Boston just kept saying stick with the PT and get a good night's sleep and give it time. I had a problem with him in the first place because I strongly feel that "Post Infectious Disease Syndrome" which he says she has, is bull****. So, we are feeling hopeful at last that she will get the kind of help she needs. Just needed to share. Keep her in your prayers if you are of a mind to do so. Quote Link to comment Share on other sites More sharing options...
momto3innc Posted November 7, 2012 Share Posted November 7, 2012 :grouphug::grouphug::grouphug: I have chronic lyme. I find the lack of understanding of it so utterly frustrating. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted November 7, 2012 Author Share Posted November 7, 2012 :grouphug::grouphug::grouphug: I have chronic lyme. I find the lack of understanding of it so utterly frustrating. I didn't know you had Lyme too, I am sorry. It blows my mind sometimes the complete and total lack of anyone's ability to diagnose and treat this wretched disease. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Tammyla Posted November 7, 2012 Share Posted November 7, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Remudamom Posted November 7, 2012 Share Posted November 7, 2012 Dr. Singleton in Maryland is my dh's doc. He's the best there is. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted November 7, 2012 Author Share Posted November 7, 2012 Dr. Singleton in Maryland is my dh's doc. He's the best there is. It makes me nuts that we have to stay within our insurance network, I don't generally mind our low income level but it really hurts when we can't just take her to the best LLMD we can find. Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted November 7, 2012 Share Posted November 7, 2012 Look into an oxalate free diet........my dd who had been ill for four years and was the. Diagnosed with chronic lyme's starting doing oxalate free about 18 months ago. The improvement has been miraculous.:grouphug: Quote Link to comment Share on other sites More sharing options...
Spryte Posted November 7, 2012 Share Posted November 7, 2012 :grouphug: "Post Infectious Disease Syndrome." :glare::banghead: I'm sorry your DD is going through the misery. Do you have a good LLMD to work with her? The best one *you* can get? I hope so, and that she will be on the road to recovery. Hoping you have lots of support, too. (From another Lyme battler, currently back on meds for the newly discovered protozoa... Fun times.) Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted November 7, 2012 Author Share Posted November 7, 2012 :grouphug: "Post Infectious Disease Syndrome." :glare::banghead: I'm sorry your DD is going through the misery. Do you have a good LLMD to work with her? The best one *you* can get? I hope so, and that she will be on the road to recovery. Hoping you have lots of support, too. (From another Lyme battler, currently back on meds for the newly discovered protozoa... Fun times.) :grouphug::grouphug: Spryte, hope you feel better soon. No, we don't have an LLMD. Been educating our primary care who is doing her best and we have a rheumatologist who is supposed to specialize in Lyme but he is the one who gave her the PIDS diagnosis. So frustrating. Best we can do as we live paycheck to paycheck. My eyes practically bleed sometimes doing all the research I do and making the "Cliff notes" version for our Dr. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted November 7, 2012 Share Posted November 7, 2012 This has been the most difficult time of her life. I have to be grateful for WTM schooling year round through 8th grade right now and her internship for credit because it pretty much put her a year ahead credit wise for high school. She lost most of last year and has been unable to do much so far this year as well. The good news is that if she takes this year and her senior year to finish the work she has at present, she will still have 8 credits more than she needs to graduate. Small mercies. (background, she has had Lyme for about 6 years before we got the diagnosis) Her health had a small upswing over the summer after 6 months of heavy duty Lyme meds but then we had to pull her off all meds and deal with the damage they caused to her stomach and intestines. We are, right this minute, pretty much back to square one. She has unrelenting headaches, stabbing pains, ulcers from the meds, nausea, vertigo, and overall body pain not to mention fatigue. Her memory is a disaster, her cognitive issues and brain fog are a huge part of why school is a total wash. She also has auditory sensory issues. Having an "invisible disease" is hugely difficult for anyone let alone a teen. Her friends don't understand and haven't been very nice. In fact, I am pretty upset with most of them. We went in yesterday for another PT evaluation, they do them every 8 sessions. What a blessing, what a day, what a revelation. Her amazing PT loves her and admires her strength but said enough is enough. She is calling our primary and telling her that her recommendation is to go to a specialist in chronic pain and illness and work on the whole mind/body to get her better including a therapist she knows who understands this sort of thing. I am so grateful that someone finally realized how desperate this kid is right now. How hopeless she has been feeling and how much she has been dealing with all this time. Never mind adding in the traumatic loss of her beloved aunt last month. I am just sad that our dr., to whom she has told flat out how depressed she has been and about her anxiety issues and panic attacks, has never once said "let's address this". I am sad that her specialist in Boston just kept saying stick with the PT and get a good night's sleep and give it time. I had a problem with him in the first place because I strongly feel that "Post Infectious Disease Syndrome" which he says she has, is bull****. So, we are feeling hopeful at last that she will get the kind of help she needs. Just needed to share. Keep her in your prayers if you are of a mind to do so. I know I can't really offer anything more than to say you and your dd are not alone. We don't have a clear dx, but we have struggled with school work, with friends who don't understand because it's invisible and whose misunderstandings of the situation cause more pain, with no routine in our lives because of all the medical appointments, etc. Counselling has helped. Whenever I take a week off, dd asks when we will go back. Keep sharing. Of course, I want your dd to make a complete recovery but it helps me to know we are not alone either. I will be interested in reading your updates anytime you care to share. In the meanwhile, we will pray. :grouphug: Quote Link to comment Share on other sites More sharing options...
besroma Posted November 7, 2012 Share Posted November 7, 2012 :grouphug: and prayers. Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted November 7, 2012 Share Posted November 7, 2012 Oh Lizzie...I am so right there with you with my Lymey kid.....sigh. What a nightmare. We get 2 steps forward one step back....ds had Lyme 5 years before he was diagnosed. He definitely is dealing with post Lyme syndrome and many emotional issues he is dealing with from losing a huge chunk of his childhood and now his movement into adult life is being hindered....and what makes it even harder, is most people think we are babying him, or holding him back or controlling him. We are not. He just will need more time to heal... :grouphug::grouphug::grouphug: I hope your dd receives the care she needs...and healing and peace. If you need to talk, you can pm me. Faithe This has been the most difficult time of her life. I have to be grateful for WTM schooling year round through 8th grade right now and her internship for credit because it pretty much put her a year ahead credit wise for high school. She lost most of last year and has been unable to do much so far this year as well. The good news is that if she takes this year and her senior year to finish the work she has at present, she will still have 8 credits more than she needs to graduate. Small mercies. (background, she has had Lyme for about 6 years before we got the diagnosis) Her health had a small upswing over the summer after 6 months of heavy duty Lyme meds but then we had to pull her off all meds and deal with the damage they caused to her stomach and intestines. We are, right this minute, pretty much back to square one. She has unrelenting headaches, stabbing pains, ulcers from the meds, nausea, vertigo, and overall body pain not to mention fatigue. Her memory is a disaster, her cognitive issues and brain fog are a huge part of why school is a total wash. She also has auditory sensory issues. Having an "invisible disease" is hugely difficult for anyone let alone a teen. Her friends don't understand and haven't been very nice. In fact, I am pretty upset with most of them. We went in yesterday for another PT evaluation, they do them every 8 sessions. What a blessing, what a day, what a revelation. Her amazing PT loves her and admires her strength but said enough is enough. She is calling our primary and telling her that her recommendation is to go to a specialist in chronic pain and illness and work on the whole mind/body to get her better including a therapist she knows who understands this sort of thing. I am so grateful that someone finally realized how desperate this kid is right now. How hopeless she has been feeling and how much she has been dealing with all this time. Never mind adding in the traumatic loss of her beloved aunt last month. I am just sad that our dr., to whom she has told flat out how depressed she has been and about her anxiety issues and panic attacks, has never once said "let's address this". I am sad that her specialist in Boston just kept saying stick with the PT and get a good night's sleep and give it time. I had a problem with him in the first place because I strongly feel that "Post Infectious Disease Syndrome" which he says she has, is bull****. So, we are feeling hopeful at last that she will get the kind of help she needs. Just needed to share. Keep her in your prayers if you are of a mind to do so. Quote Link to comment Share on other sites More sharing options...
Spryte Posted November 7, 2012 Share Posted November 7, 2012 :grouphug::grouphug: Spryte, hope you feel better soon.No, we don't have an LLMD. Been educating our primary care who is doing her best and we have a rheumatologist who is supposed to specialize in Lyme but he is the one who gave her the PIDS diagnosis. So frustrating. Best we can do as we live paycheck to paycheck. My eyes practically bleed sometimes doing all the research I do and making the "Cliff notes" version for our Dr. Thank goodness you have an open-minded primary care doc, who is listening to you and receiving all the hard work you are doing in research. It is always the kids with Lyme who worry me the most. It must be so, so hard. I just want to hug them all and tell them it gets better. Many, many moons ago there was a teen support group for kids with Lyme... I think it was through Lymenet? I wonder if something like that might help her process some of what's happening? Just a random thought. I am so much improved that there's not much to complain about re: my current treatment. It's not terrible, but not fun either. At this point, I'm just grateful, deeply grateful, for my LLMD. Isn't it a crazy moment when just trekking the laundry up the stairs can make one pause and feel deep gratitude? :) Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted November 8, 2012 Author Share Posted November 8, 2012 So grateful for all of you. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
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