Lyme Rebel
Tuesday, August 20, 2013
And then there's always that thread you are hanging by...
I had some great days. Was making some progress, taking longer and longer walks and for the most part, seeing progress. Now although I've only taken a few doses of my new herbal med's, I think my body was healing and recovering from the terrible crashes. I am taking it slow, just one drop every other day because my body is too weak.
So about three days ago, my stomach started again. I've had bouts like this before but this was bad. Burning so intense about 4 inches below my chest bone and would radiate out both sides. My heart palps got bad here too. After two nights of no sleep and crying in pain for hours I finally went down and saw a doc at the ER. As can be expected, they were of no help. I was concerned that I had an ulcer and it could be bleeding. Well it was either an ulcer or gastritis. I've been drinking aloe juice and it is finally starting to heal up. Appetite and feeling sick. Almost down to 100 lbs through this and I'm getting nervous, my body doesn't have any left to spare.
Today, my body is recovering from the stress, pain and lack of sleep. I haven't taken any of my supplements, vitamins or herbs for days. Starting back today, but not with the meds yet. This morning, again crushing fatigue but after a long nap, a little improved. Burning spine and migraines...have had a little reprieve from these but here they are back again! Is it any surprize that it's a full moon? Or that my hormones are ramping up again?
I prayed to God that he would heal my insides and ease my suffering and so it is. My tummy is healing and my ovaries have stopped hurting. I don't like to pray for myself because I feel selfish but I've read so much that God loves all his children. In my darkest moments of suffering, I cry out to God for help. I don't know if I would stay here if I didn't have that and knowing God was there. The torture is sure to make anyone want to take there own life :'-( If it wasn't for my family or for God's love, I'm not sure I would be strong enough to carry on.
There's always hope though...I am feeling better than yesterday and even better than this morning, so will cling to progress. And keep on trying. Get up and do it again, try to build up my strength, try to quit smoking! Try Try Try until you get there.
Friday, August 16, 2013
Time
I was just thinking, I used to have so many things to do and not enough time. Now I have so much time and yet can't do anything.
9 long months of my life. Since I got sick on November 1st, 2012 nothing has been the same. I've been through hell it seems. Not much of a summer and spending time with the kids. I'm thankful for the little moments here and there where I felt good enough to "ride" along for family adventures. To few and far between.
The better part of August was lost to bed. Once I started the GSE with the zithro, I crashed hard. My head was vibrating inside but I pushed through three days of these meds wanting so desperately to take the stuff that was going to eradicate this illness. Then I stopped. I was too tired to breath, move, go to the bathroom, eat. I really thought, during this time, that this might be it. My body is giving up. I didn't have the energy to think or read or research. I stopped taking everything! Listening to my inner voice, my body needs to recoup, catch up.
By the time I got to my next dr. appt. I was able to walk around a little, get dressed but this all really wore me out. I discussed all this with the doc. She thinks perhaps I've had this lyme bug a long time and the reinfection set things awry. It's totally possible and would explain past bizarre things. My migraines with aura's, mitral valve prolapse, floaters to name a few. So she says we're going to herbal. This is excellent news because I was going to request it any way. Enough with killing the good and bad. My body can't handle it right now.
Well, she gave me something called cortisol manager. i said this is for energy right? The next morning I took 1/4 pill and it drugged me out bad. Thought I'd try it again and the following day it totally crashed me out. Back in bed for three days. I did find the energy to research and read. I sent my husband down to the health co-op for rhodiola and siberian ginseng. My instincts are saying my adrenals are overworked and taxed to the max. It explains the extreme anxiety and then crashing. I've been doing these twice a day (8 drops each) and have noticed an excellent improvement! Also the dr. gave me neuro anti tox and this helped immensely with the head pressure/buzzing and headaches.
For about a week an a half I let my body recover. I felt better each day. So now I'm starting on the A-BART and A-Lyme. She said 1-10 drops 2x day. Well knowing me, I started with 1 drop. Sure enough, it was hard. So I'm doing 1 drop every other day until it seems manageable. I've learned what a healing crisis is and I now know that my body can't overcome this disease if it's so weak from being put into one after another.
I am taking daily walks and trying to excersize! This is amazing improvement! I am excited but know I must be patient. There are still a lot of mountains to climb.
I've also researched the mthfr gene mutation. I beleive this is why I get so sick and herx so bad. My body feels like poison and I beleive it can't detox it out fast enough. I actually found a specialist dealing with this so am very excited for my appointment. If I can get my detox pathways funtioning good then maybe I can get up to enough medicine to really do some damage to these bugs.
Been talking to God a lot lately. This has been of some importance during these hard times. There are a lot of things we must learn. To take the time and listen...Where ever my path takes me, God is by my side and someday everything will be ok.
Wednesday, July 31, 2013
Energy
Where does it come from? How can I get more!! This last crash episode has cost me more weight. Down to 105 now and so weak. At least I am able to be upright so far today. This is an improvement so hopefully it will progress. I've skipped my meds for 2 days now and I'm hoping in one more day to start back on the protocol. No GSE yet and will cut down on the NAC just in case. My body is too weak to afford these crashes.
I've been to weak to eat and my muscles continue to melt away. I used to be proud of how strong I was. I could stack a ton of hay by myself. I used to run 5 miles a day or hike almost 30 miles up a mountian. Now If I walk 50 yards to my mailbox, I'm beat. This sucks!
Today's agenda is to try and stay away from the lorazapam. It is what I turned to get through the last few horrible days. It helps so I'm glad I have it, but don't want to depend on it ever. I might try the taurine again. Been reading up on it and I think my dr. gave it to me to help with the anxiety but I've read it can really help with the heart sx's. My heart races bad when I get up in the morning and the palps and pvc's have been bad with this crash. I don't know why but my body struggles to detox and I beleive that the overload of toxins are what cause these horrible crashes. I've learned I have to take it really slow.
Here's praying for a good day. Maybe get a few things done around the house before I try a nap. Couldn't sleep lastnight ;( Who ever knew I would get excited to get a load of laundry done!
Tuesday, July 30, 2013
Sharing my little wisdoms
Having lost a close one through a sudden death some years ago, I went on a long and painful journey that taught me much about life. My life, those around me and even strangers. I saw life in a different light and continued to appreciate all the good, bad and ugly things. Without one, we can't have the other. It was like a gift in a funny way. When it is someone's time, it is their time...I believe. When they leave we can choose to see the gifts of enlightenment they left or we can be bitter and angry. After this time I beleive I lived life more fully, more freely and without the importance laid upon the material items of this earth. I tried to help others see this gift, although difficult sometimes. You see life in different colors then. You see the little things and smile. You look at the ones you love and love more. I was lucky to find true love and loved even harder. Now here I am years down the road. Sick and bedridden at some points. And thus life's journey continues. It is always one big adventure, isn't it? Too many people forget that everyday is a journey and there is something important to take away with your heart and soul. Today I am fighting to overcome this hideous disease. I dream of being able to climb mountians, run, hunt, play with my kids, be a good wife...enjoy my family and not be a burden. I fight. I will win! Whether it be here on earth or in heaven, someday I will overcome this. Acceptance is a funny thing. Once we accept who we are, where we are, what's happend to us, it brings peace~ We must Love ourselves. We cannot force life to be a certian way. It just doesn't work like that. We all have a purpose here and finding it is part of the wonderful journey. Although sometimes it is hard and I want to give up, even in the darkest moments I see the colors of life, the spirits and energy in the living and then the potential! To my loved ones, Love Heather~
Monday, July 29, 2013
even more fatigue
Too tired to breath, to tired to read or watch tv yet I cannot fall asleep. It feels like there is a giant rock on top of my body pushing it down. It feels like my chest is pulling inward and I can't breath. My heart palps are terrible and am having that darn racing heart again. I hate this!!! Almost a year of my life has been lost to this hideous disease. When will it ever end?
I am so happy that I woke up this morning. And so blessed to have my family. I will always appreciate all things in life that others take for granted. I am glad I have learned how to be healthy and keep my family healthy. I have to have some positives here ;) On dark nights after crying for hours, I think if it weren't for my family....
I was up to 1/4 tab zithro both am and pm and just started GSE 1/2 am 1/2 pm but am skipping everything today. Can't even get the energy to walk to the bathroom. Hopefully some more rest and I might make it through this round of spin the giant symptom wheel and see what we've won today, ugh!
By the way, I don't think it was the doxy burning my esophogous. I think it's the bur bur detox! I started using it again and sure enough, there's that burning. Maybe I 'm allergic?
I am so happy that I woke up this morning. And so blessed to have my family. I will always appreciate all things in life that others take for granted. I am glad I have learned how to be healthy and keep my family healthy. I have to have some positives here ;) On dark nights after crying for hours, I think if it weren't for my family....
I was up to 1/4 tab zithro both am and pm and just started GSE 1/2 am 1/2 pm but am skipping everything today. Can't even get the energy to walk to the bathroom. Hopefully some more rest and I might make it through this round of spin the giant symptom wheel and see what we've won today, ugh!
By the way, I don't think it was the doxy burning my esophogous. I think it's the bur bur detox! I started using it again and sure enough, there's that burning. Maybe I 'm allergic?
Wednesday, July 17, 2013
Fatigue
Dehabilitating and such a waste of valuable time. I hate it when it hits me like a train like this. I had good energy, better than usual on Monday. Then on Tuesday, can't hardly walk across the room. Too tired to even breath, it feels like.
Well today is my daughter's 9th birthday so I am taking it very slow so I can make it through the party.
I tried getting going on the doxy two more times but the burning pain, unbearable, in my esophogous kept returning. Now I have a high tolerance to pain but this was brining me to tears. So we are on 1/4 tablet of zithro. 1x day for now and will be 2x once I get all the other new meds started. This time I am going very SLOW to let my body keep up. I add one per day of the other naturals that are blood/brain barrier types. I sure hope this helps with all my neuro / CNS problems. Nattokanise, bolouke, NAC and soon, grapefruit seed extract.
I know I have problems with my "methylation" pathways. For whatever reason. I couldn't do the 5-mthf or the methyl protect. It shut me down, in bed all day. So tired and feeling like my whole body is buzzing. Well I think the b complex vit's might have a similar but milder effect because I started back on those Monday. I'm going to go back to the plain old b12 instead and see if this helps.
Keeping a real positive attitude. Through my sufferings, I keep telling myself, "they're dying, they're dying, I know it!". My pain has been much improved since being off doxy.
My brain fog is bad today, so not much for writing I'm afraid. This last month has been the roughest and I am really hoping and praying that I get some real good days in here soon. This is hard. I have almost completely forgotton what "good" feels like. Like when you get out of bed and feel like charging into the day, smiling and having plans and goals...having friends, having good times...laughing? I don't remember but know it felt good back then.
Well today is my daughter's 9th birthday so I am taking it very slow so I can make it through the party.
I tried getting going on the doxy two more times but the burning pain, unbearable, in my esophogous kept returning. Now I have a high tolerance to pain but this was brining me to tears. So we are on 1/4 tablet of zithro. 1x day for now and will be 2x once I get all the other new meds started. This time I am going very SLOW to let my body keep up. I add one per day of the other naturals that are blood/brain barrier types. I sure hope this helps with all my neuro / CNS problems. Nattokanise, bolouke, NAC and soon, grapefruit seed extract.
I know I have problems with my "methylation" pathways. For whatever reason. I couldn't do the 5-mthf or the methyl protect. It shut me down, in bed all day. So tired and feeling like my whole body is buzzing. Well I think the b complex vit's might have a similar but milder effect because I started back on those Monday. I'm going to go back to the plain old b12 instead and see if this helps.
Keeping a real positive attitude. Through my sufferings, I keep telling myself, "they're dying, they're dying, I know it!". My pain has been much improved since being off doxy.
My brain fog is bad today, so not much for writing I'm afraid. This last month has been the roughest and I am really hoping and praying that I get some real good days in here soon. This is hard. I have almost completely forgotton what "good" feels like. Like when you get out of bed and feel like charging into the day, smiling and having plans and goals...having friends, having good times...laughing? I don't remember but know it felt good back then.
Thursday, July 4, 2013
Anxiety !!!
One more day left of no doxy. I don't know how all these things play out inside my body but it hasn't seemed like much of a break! Up until yesterday I have been plagued with the dreaded anxiety. It has been pretty constant and has even come close to panic attack level a couple times. I'll just be sitting there, not thinking about much of anything and it's like I can feel my brain just "release" the flight or fight chemical things in my body. I literally feel it and then it's on. But to be thankful, yesterday was good and I didn't even have to take anything for the anxiety. Today, so far, so good. I even have a little bit of energy so that's wonderful.
I'll start on 50mg am and pm for doxy tomorrow and then stay that way until I see my ND on Thursday. Hopefully things go smooth.
We were planning on leaving early to take our kids camping at the beach and I'm hoping and praying I have a good spell so we can all have a good time. I'm way over due for a good spell, it seems.
Otherwise, since being off the doxy, I've noticed my pain and joint problems have significantly decreased. I'm sure this was all herxing. My spine has been burning bad and headaches (minor) are coming and going again. I don't know if it's a flare or what.
I've started taking a tspn of apple cider vinegar every morning. I think it will help keep the yeast down. I usually take the bee pollen in the morning too. I think it makes my symptoms worse, like a herx!? It may be that it is supporting my immune system. I'm going to start adding a tspn of stevia to my green juices because I read that it kills lyme!!! Anything I can do...I really want to look into a rife machine but they are expensive. I'm also scared because I herx so bad off EVERYTHING! Have these hidous bacteria taken my body over so quickly? Will keep fighting, will not give up, ever.
At least my emotions and mood has finally stabilized since this break. It's a lot easier to be positive and fight through the pain even when my head is in the right place.
It's going to be a long road, finally accepted that. Well it's sinking in anyway. I'm worried about finances, our family business and my family. I feel like I've let them down in so many ways. They say, it's not your fault. But really, I got them all in business together and now it's all unravelling because of me. The hardest pill to swallow, there isn't a damn think I can do about it but watch it all happen. My body is holding me prisoner...Won't give up...
This was on the way back from my last dr. appt. Had a couple good days with my husband and crashed out bad on the night before this picture. In fact it's been pretty hard since that time, up until today. A long bad spell...I want a long good spell...I want a permenant good spelll!!!
I'll start on 50mg am and pm for doxy tomorrow and then stay that way until I see my ND on Thursday. Hopefully things go smooth.
We were planning on leaving early to take our kids camping at the beach and I'm hoping and praying I have a good spell so we can all have a good time. I'm way over due for a good spell, it seems.
Otherwise, since being off the doxy, I've noticed my pain and joint problems have significantly decreased. I'm sure this was all herxing. My spine has been burning bad and headaches (minor) are coming and going again. I don't know if it's a flare or what.
I've started taking a tspn of apple cider vinegar every morning. I think it will help keep the yeast down. I usually take the bee pollen in the morning too. I think it makes my symptoms worse, like a herx!? It may be that it is supporting my immune system. I'm going to start adding a tspn of stevia to my green juices because I read that it kills lyme!!! Anything I can do...I really want to look into a rife machine but they are expensive. I'm also scared because I herx so bad off EVERYTHING! Have these hidous bacteria taken my body over so quickly? Will keep fighting, will not give up, ever.
At least my emotions and mood has finally stabilized since this break. It's a lot easier to be positive and fight through the pain even when my head is in the right place.
It's going to be a long road, finally accepted that. Well it's sinking in anyway. I'm worried about finances, our family business and my family. I feel like I've let them down in so many ways. They say, it's not your fault. But really, I got them all in business together and now it's all unravelling because of me. The hardest pill to swallow, there isn't a damn think I can do about it but watch it all happen. My body is holding me prisoner...Won't give up...
This was on the way back from my last dr. appt. Had a couple good days with my husband and crashed out bad on the night before this picture. In fact it's been pretty hard since that time, up until today. A long bad spell...I want a long good spell...I want a permenant good spelll!!!
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