Hello. My name is Kimberly and my heart has been weighing very heavy for a long time because of the suffering that you all are experiencing in different ways. I wanted to share what I have recently learned about myself in hopes that perhaps it will help someone in some way.
I will give the short version and am more than happy to help if there are any questions.
On Sept 28, 2016 my life changed. A few days prior I noticed numbness and tingling in my hands and feet and soon my legs began to throb and then heaviness. On the 28th I would end up in the hospital because I could hardly walk, a hard time to articulate, process and I looked like I had a stroke. There was not a word for the extreme fatigue also. I felt as if my body was shutting down on me. It was so scary. This would be the beginning to many unknowns as many of you know all to well.
In January I was diagnosed with FND and would soon realize that there were many like myself (some of you) with similar symptoms and in my heart feeling like there must be a connection with some of us and the Doctor's were overlooking something.
The MRI'S came back clear. I did notice things in my blood work. My ANA was positive, C4, white blood cell, proteins, glucose, INR to name a few were abnormal. I would keep being told that it was not that "out of range". I would express that if one was healthy I may agree however I am not. You all can probably relate to all of the feelings and emotions that we have being told this and no one can connect the missing piece so you are left to continue to search.
I could tell my body was not processing anything I was putting in it correctly. I would always feel so dehydrated and my health just continued to worsen and no answers. We had questioned many things and one of those being Lyme which I had been tested for at a few hospitals and all said it is not Lyme. I tested negative. We had always worried about this for living in a wooded area as well as having pets.
Recently I decided to have the Western Blot blood test by IGeneX , to rule Lyme out and to continue to try to find answers. I did not think it would be Lyme because of all of my symptoms. Before getting the test done I had read and learned more about Lyme and realized it is not just Lyme but the CO-INFECTIONS . I decided to not only be tested for Lyme but the Co-infections also . I am so GRATEFUL I did because I tested POSITIVE for Co-infections!! The Lyme came back negative. (Not only ticks carry but also other biting insects)
I am sharing this because I care. I am not saying that you all have Lyme, please do not misunderstand me. If you do not know a lot about Lyme and the co -infections which are Babesia, Bartonella, Mycoplasma, Ehrilicia, Anaplasmosis, and Rickettsia and who knows how many new ones. Please read more about for there is a range of symptoms and it effects the immune system which effects many other systems in our bodies. There is a lot of controversy with the conventional medical with this topic, Lyme. As I know to well having been to four hospitals and no one looking into this farther .
After learning all of this and still learning , I felt it in my heart to share. I was not aware of the damage Lyme and Co-infections could do to one's body and systems. My heart feels everyday for what each one of you is enduring and my hope is God led me to FND and to learn what I have, to possibly help one of you. Please always know that you are not alone. I am here if any of you have any questions about anything.
With Love-Kimberly
Remain Hopeful, today, tomorrow and always. God Bless each of you.
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Hopeful40
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That is one thing I have not and will never be offered but I have thought about it as I travelled a lot in countries where there were lots of diseases to take home as a free carry on.
I was thinking of doing it privately.
Iv seen the devastation it can invoke, a lot like what we are going through. And for many, good or bad a diagnosis is all that is wanted.
I call it better to be proactive than reactive- get that tiny little problem and get on top of it before it's one big mess than costs a lifetime of costs instead of what could have been a scan or whatever but could then have been managed much more easily.
Egs iv had since returning here.
In Australia every single person gets their thyroid checked every 6 months here although I am hypothyroid and iv told them I had many years of nests left blood results I think iv had 1-2 tests in 3 years and that's usually because I ask.
Asthma in Australia you go through the whole battery of lung function tests at the hospital every 12 months. You sit in little booths and they measure your input, output abs many more things in your lung function. When I came back here I got invited to go for my annual Ling function check up at the GP. It was seeing the nurse and her giving me a peak flow meter to breathe into. In oz I had one st home so I could see if I was having shortness of breath. My result was 300 which she told me was great. I told her it was not great my normal is 530 and it goes by your height and I'm tall so just by looking at me you would know 300 is bad. I told her that's even lower than when I'm in an acute asthma attack in a hospital and she smiled and sent me home.
Cholesterol. In Australia everyone gets it checked. Mine was always perfect but for some reason I had 3 high readings before I left. The doc was really on top of testing you every few months for everything and because this was abnormal she kept bringing me back. Unfortunately life intervened and I moved countries. I have not had it checked for 3 years now because it is never thought about when you go to the GP unless you have s known history or it's been recorded at a hospital. So I just don't even mention it ad I already feel like a hypochondriac.
Point is the above is all public healthcare. Why should people have to become really sick before anything is done. Should I wait until I have cardiac issues then they say - oh you have high cholesterol?
This is a challenge in so very many ways and many things are so hard to understand.
Try not to give up. Know that you are not alone. We are in this together and hold onto Hope for something to change so many can heal.
With Love-Kimberly
"Angel" Kimberly.
What a Blessing you are to hear from while I fix my Gluten-free Cheerios for breakfast.
Well, God tells me I will learn something new and I did.
I don't have to ask questions, I just need to see about getting this tested right. I have no idea what the Lyme test they did so many times was but I now have grave doubts that they included the co-infections. I was too stupid to ask.
In Georgia, where I first got sick, we built a house so far up in the backwoods, you could not hear a sound if you sat on the front porch and all you could see off the back porch was trees so thick with green that it changed the color of the sky. How many years we lived there....
Right now, I just want to ask how you are doing? Can you get better? Is there anything I can do for you? I want to know that you are going to be OK. Let me know that then I will talk about how best to get this addressed in my family.
How touched I am that you took time to share your experience in this community. You bring great value to us with this information.
Each day I live it must be for a reason. You have shown that to me again by your willingness to be a friend.
Dan- I truly appreciate your response and to have a dear friend from Seattle which has brought joy to my day! Thank you. How are you feeling today? I am going to be ok and you will to my friend. Remain hopeful!
I too was tested many times and did not realize about the co-infections and honestly there is so much about Lyme and so many test negative if they have had it for a while, are chronic. I would recommend the test for sure especially knowing where you lived when you started not feeling well.
I have had to step out of the conventional medical for this and I am starting to feel better already. I would recommend a Lyme- Literate Doctor (LLMD)/(they tend to treat with antibiotic therapy) and specialize in treatment of Lyme Disease or a Naturopathic Doctor (they tend to use natural herbal therapy). Unfortunately the testing and some of these types of Drs are not covered by insurance. I have recently learned we can have the blood work taken and sent on our own also.
You asked if there was anything you could do for me...you made me smile...thank you and yes there is. Please let me help you in any way that I can. I do not have all the answers however I would love to share what I have learned with you so far and what I have chosen for a treatment for this. I would be happy to exchange emails or I would be happy to call you. Let me know what is the easiest for you.
God is good Dan and he has allowed our paths to cross for a reason we may not understand this very moment. God bless you and remain HOPEFUL!
Hi Kimberly, thank you for that. I too have taken the western Blot test by igenex but it came back negative for Lymes ....I too live in a wooded area and an area with the largest rate of Lymes not too sure if I was tested for the co- infections but I will look into it. Thank you for sharing.
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