Mommyfaithe Posted December 19, 2011 Share Posted December 19, 2011 He is the one who has Lyme Disease. He was just diagnosed with neurological palsey. He is having double and quadruple vision. If you know anything about this, please share with me. I am kind of freaking out right now. He has come so far...yet he is still sick.....now he is losing his sight... Please pray... Faithe Quote Link to comment Share on other sites More sharing options...
Trresh Posted December 19, 2011 Share Posted December 19, 2011 I'll definitely be praying! My DH was diagnosed with Lyme disease and had a very short lived phase where his eyesight would go in and out in his left eye. It was about a year ago and lasted a few days and hasn't returned. Hopefully, the same will hold true for your son. They're now thinking dh may have MS....but who knows? Quote Link to comment Share on other sites More sharing options...
thescrappyhomeschooler Posted December 19, 2011 Share Posted December 19, 2011 :grouphug::grouphug: Saying a prayer. Quote Link to comment Share on other sites More sharing options...
MamaT Posted December 19, 2011 Share Posted December 19, 2011 Oh Faithe, I'm so sorry. I'm praying for your son. :grouphug: Quote Link to comment Share on other sites More sharing options...
OLG Posted December 19, 2011 Share Posted December 19, 2011 Yes, prayers surely and :grouphug: So, so hard to see our babies endure such things. Stay strong. Quote Link to comment Share on other sites More sharing options...
danybug Posted December 19, 2011 Share Posted December 19, 2011 I will join with you in prayer! :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Trresh Posted December 19, 2011 Share Posted December 19, 2011 (edited) He is the one who has Lyme Disease. He was just diagnosed with neurological palsey. He is having double and quadruple vision. If you know anything about this, please share with me. I am kind of freaking out right now. He has come so far...yet he is still sick.....now he is losing his sight... Please pray... Faithe Do you have a doctor that specializes in Lyme? I know of one just north of Indianapolis. Her family was affected by it. She takes it very seriously and treats it as a real disease. I can pm you her website address if you'd like. My husband convinced himself that he didn't really have Lyme although his symptoms improved immensely after being on antibiotics for a couple of months. He's never been all the way back to normal and has been 'relapsing' on and off for the last year. Unfortunately, he doesn't see the Lyme doctor anymore. Edited December 19, 2011 by Trresh Quote Link to comment Share on other sites More sharing options...
BamaTanya Posted December 19, 2011 Share Posted December 19, 2011 Praying, too! :grouphug: Quote Link to comment Share on other sites More sharing options...
elegantlion Posted December 19, 2011 Share Posted December 19, 2011 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted December 19, 2011 Author Share Posted December 19, 2011 Do you have a doctor that specializes in Lyme? I know of one just north of Indianapolis. Her family was affected by it. She takes it very seriously and treats it as a real disease. I can pm you her website address if you'd like. My husband convinced himself that he didn't really have Lyme although his symptoms improved immensely after being on antibiotics for a couple of months. He's never been all the way back to normal and has been 'relapsing' on and off for the last year. Unfortunately, he doesn't see the Lyme doctor anymore. Thank you all for the prayers. I am too freaked out right now to do anything but cry.....so, Cry I will, and then I will get busy. I would love the website address for yourbdoctor. I am willing to travel. I am going with my df down to a doctor in Westchester who os very Lyme aggressive, and obviously NOT covered by insurance. He has been adamantly refusing the IV antibiotics...so, I kind of went with it.....but now, I think I will use Mamma force. He is just having too many symptoms to ignore....and now his eyesight....:confused: Butbif you ask the doctors around here, They will tell youth has been adequately treated....:glare: ARG!!!!!!! Faithe Quote Link to comment Share on other sites More sharing options...
Andie Posted December 19, 2011 Share Posted December 19, 2011 (edited) Oh, my.:grouphug: This August my (then) seven year old came downstairs complaining of double vision. Long story short, within a week he'd been hospitalized with Lyme meningitis and some other complications. I'll echo everyone else's advice, please get to a doctor who knows Lyme. The "good" (!!!) thing about this apparent cranial nerve involvement is that you'll not have anyone doubting the need for more treatment now. Was it your son or the doctor resisting IV antibiotics? How long has it been since he was diagnosed initially? I'm so sorry you are going through this! Edited December 19, 2011 by Andie Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted December 19, 2011 Share Posted December 19, 2011 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
happi duck Posted December 19, 2011 Share Posted December 19, 2011 :grouphug: Quote Link to comment Share on other sites More sharing options...
Trresh Posted December 19, 2011 Share Posted December 19, 2011 PM sent. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted December 19, 2011 Share Posted December 19, 2011 :grouphug::grouphug::grouphug:How long has he been on treatment for Lymes? My friend said it can take up to 7 years. I hope and I pray that his sight loss is temporary! Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted December 19, 2011 Share Posted December 19, 2011 (edited) :grouphug::grouphug::grouphug: Edited November 10, 2021 by prairiewindmomma Quote Link to comment Share on other sites More sharing options...
Trresh Posted December 19, 2011 Share Posted December 19, 2011 He has been adamantly refusing the IV antibiotics...so, I kind of went with it.....but now, I think I will use Mamma force. Faithe Has he seen this documentary? http://www.underourskin.com/ Quote Link to comment Share on other sites More sharing options...
Andie Posted December 20, 2011 Share Posted December 20, 2011 I just read your blog post. I'm so sorry your doctors have been so dismissive! It is maddening to hear over and over the same line from so many doctors, especially when their patients are proving them wrong RIGHT IN FRONT OF THEIR EYES. Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted December 20, 2011 Share Posted December 20, 2011 Praying -- dd31 had periods where her vision was compromised -- that has passed -- praying for your son.:grouphug: Quote Link to comment Share on other sites More sharing options...
Lang Syne Boardie Posted December 20, 2011 Share Posted December 20, 2011 Praying. :grouphug: Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted December 20, 2011 Share Posted December 20, 2011 :grouphug: and prayers. Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted December 20, 2011 Author Share Posted December 20, 2011 My son is the one who did not want the IV. He has seen his friends go through IV therapies and it was not pretty....at all. One keeps ending up back in the hospital with dehydration etc. He did have several rounds of Doxycycline and zithromax. He was actually feeling much better....and now he is having symptoms again. I just don't know what to think right now. I am not sure if this is a new development or residual from his first case. He had a positive blot in June of 2010. He was sick for 18 months prior to that with the 8 months prior pretty much bedridden. He had good, but not great results with the antibiotic, but the more I research, the more I find that oral anti biotics can not cross into the brain or the bloodstream completely nor with good results. There is so much to learn....and this kid is losing more and more of his childhood. It is heartbreaking. Faithe Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted December 20, 2011 Share Posted December 20, 2011 that is heartbreaking, Faithe. I'm so sorry for all of you. My friend who has lymes has been on doxocyclene (sp>) for hears. Every time she tries to get off it, the symptoms reappear and worsen. Is your son seeing a Lymes specialist??? :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Catwoman Posted December 20, 2011 Share Posted December 20, 2011 I'll definitely be praying! My DH was diagnosed with Lyme disease and had a very short lived phase where his eyesight would go in and out in his left eye. It was about a year ago and lasted a few days and hasn't returned. Hopefully, the same will hold true for your son. They're now thinking dh may have MS....but who knows? One of our friends lost her sight completely for 2 weeks when she had Lyme Disease. The right combination of medications was the key to her recovery. Quote Link to comment Share on other sites More sharing options...
ma23peas Posted December 20, 2011 Share Posted December 20, 2011 Faithe, I am so sorry! I have a friend who has two children that have had lyme disease..they moved from Maryland down here to escape it...I know she knows most the treatments and experimental stuff...I know her two children are debilitated by it at times...my heart hurts for you and your ds! I would be glad to pass your email along to her so she can forward you some help/prayer/information! She has a large family and has been through the same path, so you both may have some things in common! :) Just PM me and I will send her your email! Blessings! Quote Link to comment Share on other sites More sharing options...
Catwoman Posted December 20, 2011 Share Posted December 20, 2011 I hope your ds reconsiders the idea of the IV antibiotics. Just because others have had problems from it, doesn't mean that he will, too -- he might not even receive the same medication. The IV treatments should work more quickly and effectively than oral medications, and it sounds as though your ds really needs that kind of aggressive approach. I'll pray for him. Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted December 20, 2011 Author Share Posted December 20, 2011 I think ds is rethinking IV antibiotics now. He has outright proof that his sight is now being affected by the Lyme...and although he is feeling better physically now, The Lyme is still active in his brain. I think the only way to get at that is by IV. I have found a doctor who will administer IV antibiotics, but it is extremely expensive, and not covered by our insurance company. I can try to fight it...but no one I know has had much luck with that. Thanks for all of your thought and prayers. They are so greatly appreciated. Faithe Quote Link to comment Share on other sites More sharing options...
Remudamom Posted December 20, 2011 Share Posted December 20, 2011 Praying for your son. Try to hang in there and stay calm. Lyme is terrible. Quote Link to comment Share on other sites More sharing options...
Cindy in the NH Woods Posted December 20, 2011 Share Posted December 20, 2011 I will pray for your son! Our nineteen year old dd has been treated for Lyme disease for over two years now. She also has Lyme disease in her central nervous system, and experienced double vision, and a swollen/slight bleed of an optic nerve. I hope a few thing we have tried will be helpful to you: ~ Acetazolamide helped clear her vision issues, but caused psychiatric problems as a side effect. If I had it to do over again, I would not put her on that particular med unless there was a serious risk of permanent damage to her vision. (She was prescribed this before her Lyme diagnosis.) Psychiatric issues improved after discontinuing this medication. ~Our dd's doctor occasionally prescribes monthly "pulse" doses of antimalarials to help antibiotics to penetrate the blood/brain barrier. ~Our dd did take IV Rocephin for about three months through a PICC line. I'm not gonna lie and say it was a piece of cake, but I personally believe this was a very beneficial and necessary part of her treatment. Insurance would not cover the costs, which I think were about $4,000 a month. By God's grace, my dh's company covered the costs. The insertion of the line, delivery of meds, dressing changes, etc. were performed by visiting RN's, several of whom were also being treated for Lyme! They were a terrific support. She is still in the process of healing, but our daughter is doing much, much better. She still has pain and minor neurological issues when she goes off her meds, and will probably need to continue treatment for some time. You are doing the right thing getting your son the help he needs! He will improve! :grouphug: I always debate sharing stuff on the internet, but LD is a life altering, nasty thing that needs to be eradicated. Somehow it seems very unethical to me that I can immunize my dog against LD, while my children remain at risk. May the Lord's peace fill you and your family. Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted December 20, 2011 Author Share Posted December 20, 2011 Cindy, thank you for sharing your experience. I don't think our insurance will cover any of this....if I can't get his pediatrician to back me up. Unfortuately, his ped is not lyme aggressive...but quite the opposite. He is in the "adequately treated" camp, like most of the medical people around here. I dragged him around to several doctors...only to have the say the same thing...or offer a spinal tap, which is only 50% reliable. sickening. If my son would remain stable, I would be happy ...but it seems as if he is slipping again....The neurological symptoms on his eyes, his muscles and even hos perosnality are starting to show again. We had a few months of a hiatus...now we go back to battle. i will keep your daughter in prayer. Lyme is a beast. Faithe Quote Link to comment Share on other sites More sharing options...
5LittleMonkeys Posted December 20, 2011 Share Posted December 20, 2011 I am so, so sorry. I can't imagine the ache in your mommy heart. Praying for strength for you both.:grouphug: Quote Link to comment Share on other sites More sharing options...
Starr Posted December 20, 2011 Share Posted December 20, 2011 Praying for your son :grouphug: Quote Link to comment Share on other sites More sharing options...
Merry Posted December 20, 2011 Share Posted December 20, 2011 Praying for you and your son. Quote Link to comment Share on other sites More sharing options...
MBM Posted December 20, 2011 Share Posted December 20, 2011 I will definitely keep your son in my prayers. And, if I come across anything that might be helpful, I'll pass it along. I wonder if there are any nano particle drugs available that could help? They can pass through the blood brain barrier. ?? :grouphug: Quote Link to comment Share on other sites More sharing options...
Medieval Mom Posted December 20, 2011 Share Posted December 20, 2011 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted December 20, 2011 Share Posted December 20, 2011 My son is the one who did not want the IV. He has seen his friends go through IV therapies and it was not pretty....at all. One keeps ending up back in the hospital with dehydration etc. He did have several rounds of Doxycycline and zithromax. He was actually feeling much better....and now he is having symptoms again. I just don't know what to think right now. I am not sure if this is a new development or residual from his first case. He had a positive blot in June of 2010. He was sick for 18 months prior to that with the 8 months prior pretty much bedridden. He had good, but not great results with the antibiotic, but the more I research, the more I find that oral antibiotics can not cross into the brain or the bloodstream completely nor with good results. There is so much to learn....and this kid is losing more and more of his childhood. It is heartbreaking. Faithe :grouphug::grouphug: Faithe. Been praying, will step it up. Rowan looses vision transiently with her Lyme. Scary. She actually wants IV because her friends on the teen Lyme boards tell her she will get her brain back, something she is utterly desperate for, but we are going to stick with the combo she is on for another month. Supposedly her Biaxin/Plaquenil combo will both get through the blood/brain barrier as well as break up Lyme's cyst form? I read until my eyes bleed too, it is so disheartening and frightening. Because our Dr. knows so little, I do all the research and give highlighted copies so she gets the "cliff notes" version. At least she is willing to learn. Have you been detoxing with him? Epson salt baths? Lemon water? Yogi tea? We use Burranscano's guidelines for supplements too. They are on the ILADS website. Is your ds on FB? Maybe he and Rowan could friend each other? Message me there ok? Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted December 20, 2011 Share Posted December 20, 2011 Praying.:grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted December 20, 2011 Share Posted December 20, 2011 I think ds is rethinking IV antibiotics now. He has outright proof that his sight is now being affected by the Lyme...and although he is feeling better physically now, The Lyme is still active in his brain. I think the only way to get at that is by IV. I have found a doctor who will administer IV antibiotics, but it is extremely expensive, and not covered by our insurance company. I can try to fight it...but no one I know has had much luck with that. Thanks for all of your thought and prayers. They are so greatly appreciated. Faithe Faithe this was just posted on the Lyme Awareness group, maybe it would help? Check infuserve America. They work to keep costs down for lyme patients. Depending on your protocol the costs can be cut dramatically .other than that, find a way to get them covered if you have insurance. Quote Link to comment Share on other sites More sharing options...
Tammyla Posted December 20, 2011 Share Posted December 20, 2011 :grouphug:Prayers:grouphug: Quote Link to comment Share on other sites More sharing options...
Heather in Neverland Posted December 20, 2011 Share Posted December 20, 2011 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
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