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UPDATE...... Diagnosis and School Presentation
Hi Everyone!! Well, Here is my update. First I will start off with telling you how the presentation went as my nephew's quest speaker for his LYME report. I was alittle nervous but I did well! My nephew did an awesome job with all of the research he did!! He didn't even have to look at his notes to talk about any of it. After about 10 mins. of him discussing all about Lyme, he introduced me and directed any questions to me. :)
Oh yeah, and .... I brought in some real live ticks to show to the class! One was an engorged tick that was feeding on my cat, and the other was the one I found on my son's pillow ( I know, I am disgusted too) but, I have had my husband spray the yard, the dogs and the cat have frontline, but unfortunately they are still able to bring them into the house. (We are actually going to look at a house tomorrow) I love my house, but I am sick of the ticks!!! Sorry, got alitlle off track as usual! LOL
Anyway, when my nephew asked if anyone had any questions, about 12 hands went up in the air!!! I was like, OMG!! I answered all the questions to the best of my knowledge, and referred them to some great websites to check out. I was then asked by one girl, what made me think I have lyme disease, so I then started to talk about my story and what I have been going through and all of the doctors I had seen, and the misdiagnosis.
I told them when I was their age, 17, I used to go hang out with my friends in the woods, the usual teenage stuff, (I didn't want to get into my personal dirt of smoking cigarettes and bom fires and drinking OV spilts LOL) TMI especially for the HEALTH TEACHER right in the room. LOL, but anyway, I told them that I started to feel sick, have swollen lymph nodes, and one particular behind my left ear. I told them how I had to have surgery on it to remove it and was told that I have Cat Scratch Fever. (Yep, I told them, I know, you are probably thinking of the song,) but, its real,.... It's a very real disease. AND... that. Cat Scratch Fever, is Bartonella, and Bartonella is a Co - infection of Lyme. I went on and on, and answered tons of questions, even the Teacher asked me questions!!
So,,,,, I think I opened up some eyes... and I told them to not fear going in the woods or being outside, but to just simply do a tick check or look for a bulls eye mark, or unexplained rashes. I said, at this age, you wouldn't think its such a big deal, (because I didn't either), but at 39 years old and all of the problems I have had to endure, its worth being careful and knowledgable (sp?) about what ticks can do to you!! so that's it!!
Next,,, my LLMD update..... I am clinically a LYMIE!!! I will be starting on Mepron and Zithromax. The doc. believes that I have been having some herxing along with some positive results ( hand tremor improving). I am feeling pretty crappy, flu like symptoms, body aches, joint pain, twitching, and extreme fatigue.
I will admit, I had a breakdown last night with some big time sobbing!! I am scared to death of what's to come!!! I fear that because I have a seizure disorder, that one of my "herxes" could be a seizure, and I do not want my kids to see that, nor do I want to go through that, I am trying to think positive still, but I can't help but feeling so scared!
Thanks for anyone that took the time to read my long winded "story books" that take me forever to type because of my constant dyslexia switching of letters and misspelling! And .... my need to ramble on and on and on.. ha ha!!
LOVE TO ALL OF YOU FOR BEING HERE FOR ME!!!!!!
Pam :)
Oh yeah, and .... I brought in some real live ticks to show to the class! One was an engorged tick that was feeding on my cat, and the other was the one I found on my son's pillow ( I know, I am disgusted too) but, I have had my husband spray the yard, the dogs and the cat have frontline, but unfortunately they are still able to bring them into the house. (We are actually going to look at a house tomorrow) I love my house, but I am sick of the ticks!!! Sorry, got alitlle off track as usual! LOL
Anyway, when my nephew asked if anyone had any questions, about 12 hands went up in the air!!! I was like, OMG!! I answered all the questions to the best of my knowledge, and referred them to some great websites to check out. I was then asked by one girl, what made me think I have lyme disease, so I then started to talk about my story and what I have been going through and all of the doctors I had seen, and the misdiagnosis.
I told them when I was their age, 17, I used to go hang out with my friends in the woods, the usual teenage stuff, (I didn't want to get into my personal dirt of smoking cigarettes and bom fires and drinking OV spilts LOL) TMI especially for the HEALTH TEACHER right in the room. LOL, but anyway, I told them that I started to feel sick, have swollen lymph nodes, and one particular behind my left ear. I told them how I had to have surgery on it to remove it and was told that I have Cat Scratch Fever. (Yep, I told them, I know, you are probably thinking of the song,) but, its real,.... It's a very real disease. AND... that. Cat Scratch Fever, is Bartonella, and Bartonella is a Co - infection of Lyme. I went on and on, and answered tons of questions, even the Teacher asked me questions!!
So,,,,, I think I opened up some eyes... and I told them to not fear going in the woods or being outside, but to just simply do a tick check or look for a bulls eye mark, or unexplained rashes. I said, at this age, you wouldn't think its such a big deal, (because I didn't either), but at 39 years old and all of the problems I have had to endure, its worth being careful and knowledgable (sp?) about what ticks can do to you!! so that's it!!
Next,,, my LLMD update..... I am clinically a LYMIE!!! I will be starting on Mepron and Zithromax. The doc. believes that I have been having some herxing along with some positive results ( hand tremor improving). I am feeling pretty crappy, flu like symptoms, body aches, joint pain, twitching, and extreme fatigue.
I will admit, I had a breakdown last night with some big time sobbing!! I am scared to death of what's to come!!! I fear that because I have a seizure disorder, that one of my "herxes" could be a seizure, and I do not want my kids to see that, nor do I want to go through that, I am trying to think positive still, but I can't help but feeling so scared!
Thanks for anyone that took the time to read my long winded "story books" that take me forever to type because of my constant dyslexia switching of letters and misspelling! And .... my need to ramble on and on and on.. ha ha!!
LOVE TO ALL OF YOU FOR BEING HERE FOR ME!!!!!!
Pam :)
Hi Ann,, how are things going for you and your family?? Were you able to speak to your daughter's class yet? I am not sure if my slight upper back spasm was a herx or not, but for two days, I thought I was going to be locked in one position for the day. Fatigue is my most horrible thing right now, the twitchy muscles are annoying but at least they don't hurt, not like the spasms.
I like your ending statement, "Lyme hates LOVE, LIGHT and WARMTH" it's awesome!! Thanks!
Pam
I like your ending statement, "Lyme hates LOVE, LIGHT and WARMTH" it's awesome!! Thanks!
Pam
Hi - First I just want to say - take a deep breathe and applaud yourself. You are active, questioning and communicating. This is hard work, great work and helps everyone. I am sure you (like me) get tired of talking Lyme especially to those uninfected... but you can already see the help you are doing. I can now recognized people with Lyme by their grey skin tone and have saved them from lots of unnecessary medication, time, and further bad treatment. You now have some knowledge and as you can see that is powerful.
This all really ***** AND you have found a doctor who is treating AND you are getting underway. It takes a long time, it's a step by step long road. One at a time. Do things you love, get help with everything! Just because the majority (depending where you are) don't think this is a serious illness, know that it is serious and it calls for serious action - you can't just take the pills (or liquid). You must rest and experiment.
So try a day, then a few days, then a week without white sugar then just quietly observe if it makes a difference. If it does keep going or try another possible food or drink you suspect isn't promoting your recovery.
I have been experimenting with an occasional walk early in the day and cutting out the night shade veggies - has helped so far with energy and the aches.
Keep in mind this is not for good! (not forever, I mean)
Think what you would do for a friend or loved one in this condition and do it for yourself or ask a friend to help.
Remember Lyme hates LOVE, LIGHT and WARMTH and you have plenty of that. Keep it up! Praying for you!
Ann
This all really ***** AND you have found a doctor who is treating AND you are getting underway. It takes a long time, it's a step by step long road. One at a time. Do things you love, get help with everything! Just because the majority (depending where you are) don't think this is a serious illness, know that it is serious and it calls for serious action - you can't just take the pills (or liquid). You must rest and experiment.
So try a day, then a few days, then a week without white sugar then just quietly observe if it makes a difference. If it does keep going or try another possible food or drink you suspect isn't promoting your recovery.
I have been experimenting with an occasional walk early in the day and cutting out the night shade veggies - has helped so far with energy and the aches.
Keep in mind this is not for good! (not forever, I mean)
Think what you would do for a friend or loved one in this condition and do it for yourself or ask a friend to help.
Remember Lyme hates LOVE, LIGHT and WARMTH and you have plenty of that. Keep it up! Praying for you!
Ann
My friends 5 yr. old daughter was brought to the ER last night with an embedded tick in her back!! The ER doc. did not get the head out and left it there!! I told her to go to a different ER and get that thing out! I also told her to make sure she is on antibiotics to be on the safe side and after treatment to get more bloodwork done! Does this ever end!!
Something needs to be done!!!
Something needs to be done!!!
Glad they listened Pam. Just shows how you have made a difference.
I have had a hard time too. Pizza. Coffee. Holloween Candy. Ciggarettes. All the things I love. But it shows how are immune systems are already overloaded with crap from everyday life.
Don't worry about the herxing. I have not been that bad either. But I can tell a MAJOR difference w/ cognative abilities from what it was before. I realize it's just gonna take time. And I will take "time" over being ill anyday. Keep up the good work. And keep the stressors low. Your hubby is going to have to understand.
I have had a hard time too. Pizza. Coffee. Holloween Candy. Ciggarettes. All the things I love. But it shows how are immune systems are already overloaded with crap from everyday life.
Don't worry about the herxing. I have not been that bad either. But I can tell a MAJOR difference w/ cognative abilities from what it was before. I realize it's just gonna take time. And I will take "time" over being ill anyday. Keep up the good work. And keep the stressors low. Your hubby is going to have to understand.
Hi, and thank you so much for such a detailed explanation.. I was supposed to be on the mepron, but because the insurance only pays for 21 days at a time and the script called for 30, it would have cost me $100.00 to have two months worth when I only needed one month. I think that is why my doc. suggested I take the flagyl.
As far as the herxes,,, I don't think I am herxing to a bad degree if its a herx at all or just a side effect from the meds that I am on. I am fatigued more than normal. I can fall asleep halfway through the day with no problem. When I first started the flagyl and zithromax, I was having a hard time falling asleep, and I thought, "first I couldn't stay awake for anything, and now I can't go to sleep" now it's back to me getting tired during the day.
I have been crazy with thoughts of moving, money, my kids, my dogs, TICKS!! I feel more overwhelmed than I have in a long time. I don't even know if there is a pattern with me. What if there is no pattern? What if I don't have a big herx? Does that mean the medication is not enough, or does it mean something else?
I know I have to change my diet, but , man o'man is that going to be hard. I love my pasta, and breads, love coffee, and have two tsp. sugar with creamer, I do take a probiotic, so far so good with that.
I hope your daughter welcomes you to speak to others regarding this, because my nephew told me that one week after I was there showing these kids what a tick looked like, a boy told my nephew that he found a tick on him!!!! THEY PAYED ATTENTION!!! Knowledge is Power!!
I would love to hear more, any advice or stories,, I listen!! thanks so much,
Pam :)
As far as the herxes,,, I don't think I am herxing to a bad degree if its a herx at all or just a side effect from the meds that I am on. I am fatigued more than normal. I can fall asleep halfway through the day with no problem. When I first started the flagyl and zithromax, I was having a hard time falling asleep, and I thought, "first I couldn't stay awake for anything, and now I can't go to sleep" now it's back to me getting tired during the day.
I have been crazy with thoughts of moving, money, my kids, my dogs, TICKS!! I feel more overwhelmed than I have in a long time. I don't even know if there is a pattern with me. What if there is no pattern? What if I don't have a big herx? Does that mean the medication is not enough, or does it mean something else?
I know I have to change my diet, but , man o'man is that going to be hard. I love my pasta, and breads, love coffee, and have two tsp. sugar with creamer, I do take a probiotic, so far so good with that.
I hope your daughter welcomes you to speak to others regarding this, because my nephew told me that one week after I was there showing these kids what a tick looked like, a boy told my nephew that he found a tick on him!!!! THEY PAYED ATTENTION!!! Knowledge is Power!!
I would love to hear more, any advice or stories,, I listen!! thanks so much,
Pam :)
You are an inspiration - thanks for giving all the details. I have been educating my daughter's school nurse via the phone and maybe it's time to visit. I am not sure my 13 year old middle schooler will want me at her health class but I'll ask her!
I was reading about your medication with concern. I am not a doctor - just an educated Lyme sufferer with two girls who had it too (Lyme and Babesia, Bartonella and Ehrlichiosis) for the last 7 years.
I know a lot of the antibiotic use is by trail and error cause there are so many forms of Lyme and their co-infections but I am concerned about you taking Flagyl if it's very early in your treatment.
This is what I understand from my treatment (and others under the same Doctor):
You treat the Lyme in stages. It seems to have a life cycle of 2-3 weeks. You can usually observe this because you experience some sort of flair up -fever often, worse aches and pains, nausea, headaches every 2 weeks or so.
The idea is to use the mildest or least invasive antibiotic to start to get the most from it's use until you plateau. That could be two weeks or a month.
Once you start to plateau, the effectiveness is gone and the Lyme will get used to it - so you switch up a level to a stronger antibiotic and/or add an additional antibiotic (or you increase the dosage).
The idea is to start to battle the Lyme while keeping the body as strong as possible. Getting rid of white sugar and flour, alcohol and caffeine if you can, increase exercise, sunshine and fresh air to support your health.
You must take probiotics (billions with a variety of types) or you could burn out your stomach. Cider vinigar tablets are recommended also for gall bladder health.
This is a slow process. Once you go through all the effective oral medications, if you still are presenting you can elect to try IV stronger dose to give the bugs the final kick!
Metpron does seem to be the best for Babesia, tastes aweful and very tiring but effective. I would reconsider taking it.
In my opinion, Fagyl is very strong and pulls out more Lyme than a new patient can process. See how it goes for you. Everyone reacts differently.
Get rest! Everyone seems to think life should go on as usual - you need much more rest, and sleep. Avoid hot tubs - it will cause a lot of herxing and circulate the Lyme (massage can do this too).
Best of luck - stay positive - Lyme hates LOVE, LIGHT, and WARMTH!!
I was reading about your medication with concern. I am not a doctor - just an educated Lyme sufferer with two girls who had it too (Lyme and Babesia, Bartonella and Ehrlichiosis) for the last 7 years.
I know a lot of the antibiotic use is by trail and error cause there are so many forms of Lyme and their co-infections but I am concerned about you taking Flagyl if it's very early in your treatment.
This is what I understand from my treatment (and others under the same Doctor):
You treat the Lyme in stages. It seems to have a life cycle of 2-3 weeks. You can usually observe this because you experience some sort of flair up -fever often, worse aches and pains, nausea, headaches every 2 weeks or so.
The idea is to use the mildest or least invasive antibiotic to start to get the most from it's use until you plateau. That could be two weeks or a month.
Once you start to plateau, the effectiveness is gone and the Lyme will get used to it - so you switch up a level to a stronger antibiotic and/or add an additional antibiotic (or you increase the dosage).
The idea is to start to battle the Lyme while keeping the body as strong as possible. Getting rid of white sugar and flour, alcohol and caffeine if you can, increase exercise, sunshine and fresh air to support your health.
You must take probiotics (billions with a variety of types) or you could burn out your stomach. Cider vinigar tablets are recommended also for gall bladder health.
This is a slow process. Once you go through all the effective oral medications, if you still are presenting you can elect to try IV stronger dose to give the bugs the final kick!
Metpron does seem to be the best for Babesia, tastes aweful and very tiring but effective. I would reconsider taking it.
In my opinion, Fagyl is very strong and pulls out more Lyme than a new patient can process. See how it goes for you. Everyone reacts differently.
Get rest! Everyone seems to think life should go on as usual - you need much more rest, and sleep. Avoid hot tubs - it will cause a lot of herxing and circulate the Lyme (massage can do this too).
Best of luck - stay positive - Lyme hates LOVE, LIGHT, and WARMTH!!
Jacie, You are so right!!! Yes, my decision making was really off over the past week!!!! I am so glad I was not making any final decisions becuase I would have regretted every single one!! We are not moving!! I love my house too much, my kids and my husband all love it here and we are going to treat our lawn, put up a side fence for our dogs, and continue to spray them before going outside along with the kids....
I rrealized that no matter where we go, its alwasy going to be there. I had blood work done yesterday and the phlebotomist asked me if I had any luck yet on what's going on with me, and I told her I was being treated for lyme. She was so shocked because she told me how her granddaughter was having the "lice" check at school by the nurse and the nurse found an embedded tick behind her ear.
...... HERE I GO AGAIN...... SAME STORY ... SAME ADVICE,, that's when I said,, ITS EVERYWHERE AND WE CANNOT ESCAPE IT!!
I rrealized that no matter where we go, its alwasy going to be there. I had blood work done yesterday and the phlebotomist asked me if I had any luck yet on what's going on with me, and I told her I was being treated for lyme. She was so shocked because she told me how her granddaughter was having the "lice" check at school by the nurse and the nurse found an embedded tick behind her ear.
...... HERE I GO AGAIN...... SAME STORY ... SAME ADVICE,, that's when I said,, ITS EVERYWHERE AND WE CANNOT ESCAPE IT!!
That is a good story. One thing about lyme is that just simply puts me in my place as far as nature's food chain goes. I always felt very smug in my part of the world....there was not predators like bears, lions etc.... The biggest animal in the forests around me are deer...
Lyme is such a tiny, but mighty, predator.
I am in fight or flight mode. When I am down and out sick I want to move ASAP. When my neighbour told me he had a bullseye rash all I could think of were the neighbourhoods on Under Our Skin.
When I am feeling better, I am more rational.
I will take the winter to think about it....and get my house market ready in the meantime. :)
Lyme is such a tiny, but mighty, predator.
I am in fight or flight mode. When I am down and out sick I want to move ASAP. When my neighbour told me he had a bullseye rash all I could think of were the neighbourhoods on Under Our Skin.
When I am feeling better, I am more rational.
I will take the winter to think about it....and get my house market ready in the meantime. :)
You might want to delay a huge decision like moving from a place you love until your physical condition settles down a bit. Lyme has a nasty way of affecting decision-making that is hard to describe. I think it comes from the body's chemical reaction to the infection, but can't point to anything I've read that specifically says that ... I just know that I was going through the same thought patterns that you describe. It's hardwired into us, from our caveman ancestors yelling, "Run! T-Rex is coming!!" down to the spurt of adrenalin that helps us jump out of the way in a crosswalk if a car comes too close. It's a survival instinct, and that's good.
In 'Cure Unknown' by Pamela Weintraub (a trained science journalist whose whole family got Lyme), she talks about feeling trapped by the beautiful green, leafy lot their Connecticut house was on, and how they loved it ... but after she realized what had made her family so sick was still lurking out there, she couldn't deal with it anymore and they moved into a highrise in a less leafy part of a Conn. city. She feels more secure there, and that's a valuable thing.
So you may want to follow her example, but in that situation, I would give it some time, until your own treatment has fully kicked in and your nervous system is not on hair-trigger anymore. Truth is, Lyme ticks are everywhere, on your neighbor's cute little dog, on the shrub you brush by on the sidewalk. We live in a tall apartment building, across the street from a park. After I was successfully treated for Lyme and babesia, I went and sat on a towel in the park one lovely day, being careful to stay ON the towel, when an aggressive dog came at me, so I jumped up and threw the towel over my shoulder and got out of there. Little did I know that there was a dog tick (not a tiny Lyme tick) on the towel, and the dog tick burrowed into the back of my thigh where I didn't find it for weeks. By then it had given me Ehrlichiosis.
Moral of the story: it's always something. We are at war with the microbes, and that won't end any time soon. You might want to give yourself some breathing room, like "Hubby, let's agree to revisit the issue of whether to move next May 1." See if you feel differently then.
Just an idea ... but like Pamela Weintraub, you may feel better with some concrete around you ... tho like me, it may not be enough. :)
It's always something.
In 'Cure Unknown' by Pamela Weintraub (a trained science journalist whose whole family got Lyme), she talks about feeling trapped by the beautiful green, leafy lot their Connecticut house was on, and how they loved it ... but after she realized what had made her family so sick was still lurking out there, she couldn't deal with it anymore and they moved into a highrise in a less leafy part of a Conn. city. She feels more secure there, and that's a valuable thing.
So you may want to follow her example, but in that situation, I would give it some time, until your own treatment has fully kicked in and your nervous system is not on hair-trigger anymore. Truth is, Lyme ticks are everywhere, on your neighbor's cute little dog, on the shrub you brush by on the sidewalk. We live in a tall apartment building, across the street from a park. After I was successfully treated for Lyme and babesia, I went and sat on a towel in the park one lovely day, being careful to stay ON the towel, when an aggressive dog came at me, so I jumped up and threw the towel over my shoulder and got out of there. Little did I know that there was a dog tick (not a tiny Lyme tick) on the towel, and the dog tick burrowed into the back of my thigh where I didn't find it for weeks. By then it had given me Ehrlichiosis.
Moral of the story: it's always something. We are at war with the microbes, and that won't end any time soon. You might want to give yourself some breathing room, like "Hubby, let's agree to revisit the issue of whether to move next May 1." See if you feel differently then.
Just an idea ... but like Pamela Weintraub, you may feel better with some concrete around you ... tho like me, it may not be enough. :)
It's always something.
LOL, you sound like me,,,,, I told my husband to get all of the tires from the garage (he is a mechanic) and crush them. Then we can make the backyard have the "playground" effect with the cushy blacktop ground instead of grass.... and ,,,, I wasn't kidding when I told my husband. I said, its either that or we move to mars. LOL I love my house too much to sell it!! I cried and cried to my husband, I said, I can't do it!! I can't move.
I am also struggling with whether to move or not. It is heartbreaking since our property is so special to us...on the foot of a beautiful lake and conservation land...we would never be able to afford it anywhere else. We are also settling in the community.
It is a risk benefit analysis. Do I benefit enought to risk my families' health. (That is assuming I got sick here...which I don't totally know).
I always remember what Jackie said...ticks are part of life and disease is part of life.
I am constantly struggling with what to do. Are tick checks enough?
We are also considering landscaping to elimate grass and gardens....maybe turn our acre of land ito a parking lot....just kidding...kinda....
It is a risk benefit analysis. Do I benefit enought to risk my families' health. (That is assuming I got sick here...which I don't totally know).
I always remember what Jackie said...ticks are part of life and disease is part of life.
I am constantly struggling with what to do. Are tick checks enough?
We are also considering landscaping to elimate grass and gardens....maybe turn our acre of land ito a parking lot....just kidding...kinda....
Ha Ha Ha!!! LOL, Your funny!! :) Thanks for the giggle, and ,,, You are probably right!! Sometimes he is like, Your still typing, what are you writing a book!!?? He jokes with me too, I always have alot to say, I can't help it, lol
Big Hugs!! :)
Pam
Big Hugs!! :)
Pam
LOL, if your husband has to read all your posts, he might finish Moby **** faster, LOL. J/K Pam!! Thnx for the answer to the health teacher's question.
Tears, sniffles, and happiness all describe my emotions right now. Wow! Thank you both for such kind words. I really hope that I can make a difference, It makes me feel useful somehow, (simply because I am on disability) I talk about kids, cleaning house, seeing drs. and how I feel on a daily basis, so I need to have a purpose some way, some how!!
ewford, Thanks for sharing what you went through and how at one point felt that your wife didnt believe in what you were feeling, I know how hard it is.... As far as what the health teacher had asked,,, he wanted to know if it is curable, and also asked me about , Why pregnant women should not be changing litter boxes..
I answered the first question with,,, " If you are able to catch this disease in its early stages, you have a greater chance of getting rid of it, however.... if the doc's do not treat you long enough with the right dose of antibiotics, it might still be lurking,,, in that case, it can continue to spread,and make you more ill (as in my case). I told him, and the class that once it becomes in the later stages, it takes a longer treatment protocol with a higher dose of antibiotics, and in some people, require IV antibiotics. For weeks, to months and even years!! They were shocked.
The answer to the litter box, was,,, I think it has more to do with "Toxoplasmosis",,,, I didn't get into the whole definition, and even explained to him that I wasn't 100 % sure, but I do not believe that Lyme and Toxoplasmosis are in the same catergory, its seperate. (NOT SURE IF I WAS RIGHT!! lol)
My husband is actually reading some of my forum posts to help him become more educated on what I will be going through. I need to
buy the documentary Under Our Skin so he can see it. When I saw it, I rented it on my IPad and watched it with my mom and sisters, I think its time for him to view it!!
Another quick update,,,,, My insurance does not cover the full 30 day supply of Mepron, so Dr. C called me and wanted me to get the Flagyl filled instead.. so I will be on that and zithromax..
Niko,,,,, That was very sweet of you to say that of me. Its a great feeling to know that someone that doesn't even know me can "see" me through my words!!!
Big Hugs to both,
Pam
ewford, Thanks for sharing what you went through and how at one point felt that your wife didnt believe in what you were feeling, I know how hard it is.... As far as what the health teacher had asked,,, he wanted to know if it is curable, and also asked me about , Why pregnant women should not be changing litter boxes..
I answered the first question with,,, " If you are able to catch this disease in its early stages, you have a greater chance of getting rid of it, however.... if the doc's do not treat you long enough with the right dose of antibiotics, it might still be lurking,,, in that case, it can continue to spread,and make you more ill (as in my case). I told him, and the class that once it becomes in the later stages, it takes a longer treatment protocol with a higher dose of antibiotics, and in some people, require IV antibiotics. For weeks, to months and even years!! They were shocked.
The answer to the litter box, was,,, I think it has more to do with "Toxoplasmosis",,,, I didn't get into the whole definition, and even explained to him that I wasn't 100 % sure, but I do not believe that Lyme and Toxoplasmosis are in the same catergory, its seperate. (NOT SURE IF I WAS RIGHT!! lol)
My husband is actually reading some of my forum posts to help him become more educated on what I will be going through. I need to
buy the documentary Under Our Skin so he can see it. When I saw it, I rented it on my IPad and watched it with my mom and sisters, I think its time for him to view it!!
Another quick update,,,,, My insurance does not cover the full 30 day supply of Mepron, so Dr. C called me and wanted me to get the Flagyl filled instead.. so I will be on that and zithromax..
Niko,,,,, That was very sweet of you to say that of me. Its a great feeling to know that someone that doesn't even know me can "see" me through my words!!!
Big Hugs to both,
Pam
Wow! Pam, I don't know what to say other than you have shown a courage that very few would ever do! I commend the speaking to the class and I HOPE your nephew got an A+ on his assignment. I would love to know what the Health teacher asked you and if he/she was a little skeptical of your presentation. I would hope he/she would connect the dots and start to see that this is a very serious illness with very serious consequenses.
I remember when I was very ill, I thought I was dying. My wife did not understand that I would just break down and sob in her arms for no appearent reason. And I am not a very physically emotional person. My wife thought I was going thru a mid life crisis and she said it was in my head. THAT made it all the worse, when a spouse dosen't believe you.
Even though you think you suffering more, you are actually getting better. Always remember that. Sometimes I need to remind myself that on every road to recovery, there are going to be a few flat tires and running out of gas.
I am so proud of you for being an advocate and using your own personal experience to teach others about your illness. You might not know it, but someone will actually thank you (maybe not in person, but in prayers) for what you did. Sometimes I get depressed over the one person who blows me off and thinks I'm full of crap, but the other 10 that listen and say "wow!" make it worthwhile.
I hope your treatment goes well, just remember the "flat tires" are just that. You will get there. I'm glad you found this forum and will get better, so many won't and be stuck in their diag for life (until they find this forum, or someone like you that will help them).
I remember when I was very ill, I thought I was dying. My wife did not understand that I would just break down and sob in her arms for no appearent reason. And I am not a very physically emotional person. My wife thought I was going thru a mid life crisis and she said it was in my head. THAT made it all the worse, when a spouse dosen't believe you.
Even though you think you suffering more, you are actually getting better. Always remember that. Sometimes I need to remind myself that on every road to recovery, there are going to be a few flat tires and running out of gas.
I am so proud of you for being an advocate and using your own personal experience to teach others about your illness. You might not know it, but someone will actually thank you (maybe not in person, but in prayers) for what you did. Sometimes I get depressed over the one person who blows me off and thinks I'm full of crap, but the other 10 that listen and say "wow!" make it worthwhile.
I hope your treatment goes well, just remember the "flat tires" are just that. You will get there. I'm glad you found this forum and will get better, so many won't and be stuck in their diag for life (until they find this forum, or someone like you that will help them).
You made me feel soo soo good. Thank you for that!! Yeah, sobbing is very good to get it out every now and then. I try so hard all of the time to hold it all in and "act" as if "I'm fine".
When my family calls me to ask how I am feeling, I say, "eh, I'm ok, nothing unusual that I haven't dealt with already". So when I finally broke down to cry as hard as I did, it felt good to let it go.
The last time that I cried that hard, was when I was told I had Graves Eye Disease. I have seen people with the protruding eyes before, so I was totally freaked out and knew what I was going to look like! That is so hard on someone to not only have a disease, but to have it show in the window to your soul was just extremely horrifying.
I hated to look at myself in the mirror, or look anyone straight in the eye, knowing that they had to look back into my eyes. .... horrible........
Anyway,,,, yes, the LLMD is treating me for Babesia and also mentioned Bartonella. Not sure if the meds he just put me on is for the bart, but, I do remember the word babesia and how much my symptoms are related to it.
I didn't realize how much Mepron is.. my insurance will only pay for 21 days so I have to call my LLMD and ask for them to write another script for the remainder at $50.00. So for the 30 days of zithromax and mepron, its going to cost me $110.00. Not to mention, the office visit at 145.00. Does this disease make people go bankrupt or what?? OMG
I am going to write my senator, or governer or whoever i need to write to, becuase thsi is just plain rediculous!!!!!!!!! It's not fair!!!! We are sick and the insurance company's are A$$ES!!!!!!
Sorry for that little rant, I have been extremly miserable today, I haven't had my celexa (my happy pill), and I am feeling it!
Jackie, thanks again hon,,, you are an amazing person for taking so much time in helping others!! You definately have a way with words!! :)
And,,,,, Thanks for sharing your story about you and your friend and the letter you wrote to her,,, I cried right along with reading your post, because it hits home!!!
Love ya, and big hugs,
Pam
When my family calls me to ask how I am feeling, I say, "eh, I'm ok, nothing unusual that I haven't dealt with already". So when I finally broke down to cry as hard as I did, it felt good to let it go.
The last time that I cried that hard, was when I was told I had Graves Eye Disease. I have seen people with the protruding eyes before, so I was totally freaked out and knew what I was going to look like! That is so hard on someone to not only have a disease, but to have it show in the window to your soul was just extremely horrifying.
I hated to look at myself in the mirror, or look anyone straight in the eye, knowing that they had to look back into my eyes. .... horrible........
Anyway,,,, yes, the LLMD is treating me for Babesia and also mentioned Bartonella. Not sure if the meds he just put me on is for the bart, but, I do remember the word babesia and how much my symptoms are related to it.
I didn't realize how much Mepron is.. my insurance will only pay for 21 days so I have to call my LLMD and ask for them to write another script for the remainder at $50.00. So for the 30 days of zithromax and mepron, its going to cost me $110.00. Not to mention, the office visit at 145.00. Does this disease make people go bankrupt or what?? OMG
I am going to write my senator, or governer or whoever i need to write to, becuase thsi is just plain rediculous!!!!!!!!! It's not fair!!!! We are sick and the insurance company's are A$$ES!!!!!!
Sorry for that little rant, I have been extremly miserable today, I haven't had my celexa (my happy pill), and I am feeling it!
Jackie, thanks again hon,,, you are an amazing person for taking so much time in helping others!! You definately have a way with words!! :)
And,,,,, Thanks for sharing your story about you and your friend and the letter you wrote to her,,, I cried right along with reading your post, because it hits home!!!
Love ya, and big hugs,
Pam
Pam,
You did fabulously! Good for you. Your presentation sounds balanced and detailed and reasoned, which is what is missing from so much about Lyme. You did great --
Mepron is what I was given for babesiosis, as I recall, along with zithromax. My LLMD treated that first, then moved on to treat the Lyme. Any discussion of you having 'babs'?
About your boo-hoo breakdown -- it was well deserved. You are going through a lot, and letting the tension out is healthy. I sat down the other day and wrote a letter to an old acquaintance I last saw several years ago when I was still very ill ... she and I hadn't know each other all that well before I was ill, and I seldom saw her, but she seemed at that one meeting to pick up on the fact that something was going wrong for me. I didn't tell her my diagnosis then or even say I was ill, but as I finally turned the corner in the past year and came back to being largely my old self, I wanted to write her to thank her for kindness ... she had called me several times back when I was sick, not asking specific questions, but clearly checking up on me with great gentleness.
So finally the other day I wrote her a letter and explained why I had seemed so odd when I last saw her, and that I figured she knew something was wrong, and how much it had meant to me that she was concerned, even though we never talked specifics. While I was writing that letter, I started crying and the tears kept rolling the whole time till the letter was finished and in the mail. It was an acknowledgement to myself how bad off I had been, how lonely and scary it had been back then, and how far I have come.
So when you say you had a breakdown the other night with some big time sobbing, I DO so understand. I'm glad you could let go like that ... I think it's very healthy, and there are still more tears for me in the future to catch up with myself and all I have been through in the recent years. To feel damaged and frightened and confused is so terrible, and it takes effort and time to deal with it all.
I think you are doing a great job and commend you for it. A big hug to you, with a moisty-eyed 'Good for you!'
You did fabulously! Good for you. Your presentation sounds balanced and detailed and reasoned, which is what is missing from so much about Lyme. You did great --
Mepron is what I was given for babesiosis, as I recall, along with zithromax. My LLMD treated that first, then moved on to treat the Lyme. Any discussion of you having 'babs'?
About your boo-hoo breakdown -- it was well deserved. You are going through a lot, and letting the tension out is healthy. I sat down the other day and wrote a letter to an old acquaintance I last saw several years ago when I was still very ill ... she and I hadn't know each other all that well before I was ill, and I seldom saw her, but she seemed at that one meeting to pick up on the fact that something was going wrong for me. I didn't tell her my diagnosis then or even say I was ill, but as I finally turned the corner in the past year and came back to being largely my old self, I wanted to write her to thank her for kindness ... she had called me several times back when I was sick, not asking specific questions, but clearly checking up on me with great gentleness.
So finally the other day I wrote her a letter and explained why I had seemed so odd when I last saw her, and that I figured she knew something was wrong, and how much it had meant to me that she was concerned, even though we never talked specifics. While I was writing that letter, I started crying and the tears kept rolling the whole time till the letter was finished and in the mail. It was an acknowledgement to myself how bad off I had been, how lonely and scary it had been back then, and how far I have come.
So when you say you had a breakdown the other night with some big time sobbing, I DO so understand. I'm glad you could let go like that ... I think it's very healthy, and there are still more tears for me in the future to catch up with myself and all I have been through in the recent years. To feel damaged and frightened and confused is so terrible, and it takes effort and time to deal with it all.
I think you are doing a great job and commend you for it. A big hug to you, with a moisty-eyed 'Good for you!'
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