posted
Every day I wake up, I am in survival-mode because 1. I can't think 2. I feel very good all over (some kind of positive euphoria like feelings are steady in my thyroid all day that just act as a mask the horrible reality), yet I know the reality of it, is I am holding on by a very thin thread because when the euphoria-like feeling goes away momentarily, and it very rarely does, my brain/thyroid/whatever is like a structure just ready to collapse, and when that happens, it looks like a good chance I will lose the ability to speak, walk, and feed, clothe, bathe myself. 3. I have to take care of myself, yet my thoughts are forcing me to depend on things if it makes sense -- they're making me think something is going to fall out of the sky and save me. Every day I wake up, I forget what I have noticed and the day before about my condition. 4. I believe people like some kind of simpleton -- whatever they say, I don't even question. And I don't even realise to question it, I just accept it. 5. This is just a glimpse of the problems I have been having. I wasn't even able to articulate what was hurting not too long ago, let alone even realise that I wasn't wearing clothing to _____ for instance. So me not realising things, i.e. I could be staring at someone for 15min. and not even know it.
I have to call Dr. S about this on Monday.
I had to write all of this out because I literally can't think, this is my organiser -- I don't realise any of my actions have consequences, and my 'thoughts' are all 'thought' outloud like some kind of savage. It's like I have 0 privacy. Everyone knows and sees what I am 'thinking' but me. I.e. if I wish someone harm in whatever's left of my mind but don't really mean it, they can somehow see that I am wishing them harm, but I can't see it myself.
I live with my parents, but they don't believe me about the seriousness of all of this, and they can't help me financially.
I give off the appearance of me being fine as if something is forcing me to answer that everything is good, and I answer that way. This has been happening for years. I am finally able to put it in words.
Posts: 40 | From Maryland | Registered: Feb 2013
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lax mom
Frequent Contributor (1K+ posts)
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temporarilyplagued: my best advice to you is to let your parents know your true reality. They can't help you if they think everything is fine.
Carol in PA
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posted
I think you may be showing some symptoms of psychosis.
This can be caused by B12 deficiency. If you cannot get B12 shots, try sublingual tablets or a B12 patch. Look for methylcobolamine.
You need to take magnesium.
You need to take a higher dose of fish oil, one that's very high in EPA.
You have some insight into your condition, which is good, but you have not been able to interact much with people who are trying to advise you.
The chemicals in your brain are out of balance, and this affects your ability to function.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
temporarilyplagued: What I hear you saying is that writing things out (here on Lymenet, for example) is one tool you use to keep thoughts/experiences organized, and that this is something very valuable for you.
This is wonderful insight into your current functional state.
I would suggest keeping a journal, either on a computer (be it a word processing document or a blog) or on paper. Try to write every day.
Document your current meds, diet, etc., along with your symptoms. That's the "just the facts" bit.
Also document how you feel, emotionally and spiritually, what thoughts you have, which thoughts you find intrusive, what is worrying you.
Document your successes, particularly if you find a new strategy or coping mechanism, so you'll remember the good things as well as what has worked to make things less bad.
This can then be something you can choose to share either entirely or in part with your LLMD, a therapist, or your parents, as a way of explaining just how bad you feel. It might also shed light on patterns, if, say, eating dairy is followed by a day of worse symptoms (just a random example).
You might also find the act of documentation empowering as you can flip through the pages and see each day, each data point, organized into manageable chunks.
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
temporarilyplagued - I've been collecting my thoughts to be sure I include everything I wanted to say to you to help you. I will repeat most of what I wrote in the pm I sent you, addressing the spiritual and medical.
My heart breaks for you as I read your posts and I am so sorry for all your suffering. Please know there are many in the same or even worse situations, you are not alone.
God has opened a window for you by bringing you to Lymenet - take it and use it. Research all you can and know that we are here to help you, because we are all in this together.
God does not hate you or any of us. We are His children, His creation.
He died on the cross for all of us to save us, even though He didn't have to! He ultimately paid the price for all our sins, because He loves us.
I don't understand why there is illness and so much suffering in the world either and that has been, and still is, a centuries-old question. Unfortunately, we live in an imperfect world due to the fall of man and the consequences of sin.
God does not send illness, the Devil does. Satan is the one who hates us and is doing this.
Scripture tells us that "he is prowling like a lion, looking for the next one to devour." 1 Peter 5:8 . He comes to kill and destroy - that is his whole purpose.
I really think you are being under-treated by Dr. S in NJ and you need to find a new one a.s.a.p.! I have sent you some suggestions as to how to go about doing this.
Lyme bacteria cross the blood/brain barrier. You mentioned in your post that you are taking Artemisinin. That plus Mepron is the treatment usually used for Babesiosis.
Babesiosis can cause psychiatric problems - have you been tested for it or any other co-infections (IGENEX Labs in Palo Alto, CA is usually the lab Lyme-literate doctors use)?
Educate your parents and others by viewing the DVD, "Under Our Skin", for free on www.hulu.com. Read the book, "Cure Unknown", by Pamela Weintraub if you can (check your local library to see if they have a copy).
Listen to KLOVE, a contemporary Christian radio station, with affiliates all over the country. You can find one in your area by going to www.klove.com. They also have a prayer line at (800) 525-5683.
God bless you and hang on to the Lord with everything you've got. Keep these lines of Scripture in mind:
"I can do all things through Christ Who strengthens me." Phil 4:13
"Come to me all who are burdened and I will give you rest. Take my yolk upon yourself, and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yolk is easy and my burden light." Matthew 11:28
I also highly recommend you read (if you are able to) Joel Osteen's new book, "I Declare - 31 Promises to Speak Over Your Life".
Posts: 9020 | From Illinois | Registered: May 2006
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lax mom
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temporarily:
Did you know that despite immense suffering, it's still possible to have a sense of peace deep in your soul and feel the warmth of God's love?
(Just a few months ago, I would have said that was hogwash. That I needed to be healed before any part of me felt better.)
Dekrator48
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Member # 18239
posted
If this site had a like button, I would "like" hopingandpraying's answer above.
Just to add that you can listen online to klove.com...go to the site and scroll over the heading "Music Room", then click on "Listen online".
Their music helps me daily to keep my thoughts in the right place, so I highly recommend it.
I think it also helps to watch videos of someone like Nick Vujicic, who was born with no arms and no legs, but has made such a difference in the world. Here is his site, and more can be found on youtube. Very inspirational!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Young and going through this, how awful. I am sorry for your pain. You will be in my prayers.
The brain fog is an evil that robs one of basic abilities to learn, share, communicate, etc.
Many have tried to give you advice and hope. Notice there isn't one just right answer? Our bodies are a wonderful, unique creation, and it will respond in ways that differ from others. You, your docs, and maybe some of the info here should work up a plan for you to try.
Our bodies do change and may react to our meds and supplements and diet differently, so adjustments may meed to be made.
You may want to consider a naturopath who does muscle testing. Perhaps some mold or flukes have reared up. Consider that and consider a zapper or other parasite evacuation protocols.
As for God, remember that even Jesus cried out that He felt forsaken. It's a human emotion, and it stinks. However, God is big enough to handle your being angry .
Now, for a bit of motherly and teacher advice. Look around your house, neighborhood, or city for ONE way you can help someone else in the next few days. We are hard-wired to respond positively when we do this. It can beanything
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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