posted
Some of my family have suggested that perhaps some of this is psychological and that I'm chasing after a diagnosis of Lyme Disease as I can come up with nothing else.
I have tried over and over again to explain what I am feeling as it's not just anxiety, tachycardia, and shortness of breath, which even the Dr.'s in the hospital said I was having panic attacks and nothing more as my MRI was normal and other labs, etc.
Well, I also have Chronic Fatigue, Aching bones / Joints, Insomnia, Head Pain, Eye Pain, Memory Problems, Confusion, a droopy right eye, Weakness all over, mood changes, just an overall feeling of blah, can't focus on anything or concentrate. I'm getting chills every morning and during the day, yet I have night sweats at about 2 or 3 am and my pillow is soaked. I'm Herxing like crazy most of the time from some Andrographis I'm taking and still from the Antibiotics I was put on.
I had a pos. IGG #41 and IND on #39, CD57=42, Vit D=< 7.0, Sed rate of 105 then back to normal within 2 days.
I have found a few checklists for LD and the co-infections from searching around and I can check most symptoms.
The lack of support I'm getting makes me second guess myself, but I know in my heart that it can only be Lyme Disease. The symptoms just don't fit each other. There is no connection between Anxiety and Weakness, or Anxiety and a drooping right eye.
Sure, anxiety can cause a fast heart rate and even shortness of breath during a panic attack, but even still, I'm getting these symptoms when the anxiety isn't present.
So I ask, how do I convince the ones I love and that love me that this is not all in my head ? It is so frustrating to deal with the symptoms, but I'm finding equal frustration in convincing people this is not a psychological problem, although there are definately psychological components that present, and I see them as only secondary.
Any suggestions would be appreciated.
Shannon
Posts: 32 | From DC | Registered: Jan 2009
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posted
A difficult place to be. Even after my diagnosis of early lyme CDC criteria, I was misdiagnosed with bipolar and/or schizophrenia by the ER after beginning treatment.
It was hard for me to explain to my family that I wasn't crazy, just really sick. Being paranoid and unable to think clearly didn't help.
Try not to focus too much energy on trying to convince them, you need to focus on becoming healthy! They may come around as your treatment progresses and you begin to feel better.
My sister printed out information on neuropsychiatric lyme for my family to read.
My mom also read some ILADS information online.
And I had each of my parents come with me to my appts.(this can help in so many ways!)Especially to my LLND.
-------------------- -Love and Gratitude Posts: 69 | From another planet far far away | Registered: Oct 2008
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You know what I have realized after many years of the "it's all in your head" oh yes and the "you are just searching for a doctor who will tell you what you want to hear"
Even after a positive lyme test.
It was the book "Cure Unknown: inside the lyme epidemic" by Pamela Weintraub that finally got them to understand more.
Now with my family, it's more about them than me so they can only understand to a point. However I have heard of other family and friends who have read this book that it really helped alot.
Fancy
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Shannon, I'm so sorry your family is not supportive yet. So many people have had the same experience.
My aunt told me that my huge list of symptoms and disability was all caused by post traumatic stress syndrome.
I told her that I didn't think a low blood volume with low red blood cell mass could be caused by post traumatic stress. She didn't have much to say to that. Now her daughter is sick with similar symptoms.
I've also been told that the reason that my pulse increased so much when I stood up was due to anxiety. Turns out my blood pressure was dropping to as low as 65/40 and that's why my pulse was so high.
Many people think that doctors have all the answers and they don't understand when people are sick and the doctor can't find anything wrong via current testing. Surprisingly, even some doctors think they know everything and they also tend to move toward a psychiatric diagnosis when they can't figure out what is wrong.
Maybe the best way to help them understand is to print out some of the info on the blog that has been posted by the science journalist who wrote "Cure Unknown".
In the book, she details her own family's harrowing story of how hard it was to get help and how they were told that thier very sick child needed to see a psychiatrist.
Point out your positive test for babesia to them and find something that lists symptoms. That may help a little.
Aside from getting them to read the book, also consider getting the movie "Under our Skin" and asking them to watch it with you.
Hang in there. Come here to vent and get support. We understand what you are going through.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
shannon,
in my newbie package links are 3-4 stories:
lymedad's letter to family/relatives about lyme,
dar's toy story;
spoon theory; and perhaps others...
view UNDER OUR SKIN lyme dvd documentary as a family and then discuss it aftewards...
just remember to stay AWAY FROM FAMILY/RELATIVES WHO WANT TO BRING YOU DOWN...
this is where yu need POSITIVE folks only around you to survive and deal with the hand dealt to us ok!
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi Shannon, I understand where you are at! Except that my family knew I was sick for the first 2 years. That was when my panic attacks started, when the fatigue/twitching/swallowing problems started. Doc's diagnosed me with multiple things, eventually Chronic Fatigue Syndrome. I finally got well enough to function, but later the panic attacks came back.
My family kept telling me to go to counseling, ect. Instead I did the raw vegan diet again and again it went away. Came back about 2 years later and my sister and dad kept sending me spiritual links and numbers for counselors, ect.
It was frustrating! Last fall when I finally decided I needed to see an LLMD, I was speaking with my dad on the phone and he said, "You really think you have Lyme Disease, I mean that's just..." I know he wanted to say crazy, but didn't.
My mom thought that I probably did have it the whole time. She herself had anxiety for years and didn't have the symptoms like I did. I never complained about all the symptoms, so I realize they were unaware of the heck my life was, but still, it made me angry that they kept telling me I was mentally ill, when I knew physically there was something wrong!
Funny how the other times I got over the 'panic' it was never through counseling (I've never seen a counseler/therapist), it was with supplements, colloidal silver and a raw diet. Hmmm...to me that suggests that it is a physical cause!
Hang in there, just lean on Lyme.net for now. I did until I got my + then my family was like, "ohhh...." Luckily my husband always believed something was physically wrong, he may have been kicked to the curb if not, lol!
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hello Shannon, I'm sure you see by now your not along.
I've been sick for over a year now and no one in my family understands and they don't care to learn anything about lyme.
I know what your going through and it's hard with no support.
Keep positive and get better for yourself.
e-mail me anytime you would like to talk!!!
Take care
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Here's a letter that might help, previously posted by LymeDad:
Dear Family of a Lyme Disease patient,
I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.
I am one of you.
For more than 6 years my daughter has suffered through this ugly, dark disease.
She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).
She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting time of her life.
We have taken her to every known medical specialist in southern California as well as three different General Practioners.
She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).
For the first 4 years of her struggle, I was not a good parent, even though I thought I was.
My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".
I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me").
Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.
You can't possibly be this ill and not have something tangible to show for your symptoms.
You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.
Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.
That's the way I approached her illness. It's time you took control of your illness and will yourself well.
I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.
My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.
Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.
If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.
I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.
Hey they just can't help the way this disease treats them. It's not their fault.
We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.
They need our understanding.
If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.
Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.
We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.
My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.
She certainly doesn't need someone who claims to love her causing her any more pain than she has already.
Families. from one who has been in your shoes, please let them know you love them.
Let them know you're there to help them.
Let them know that there's no way you can possibly understand their pain, but that you wil try to understand their illness.
I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.
I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.
I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.
Sincerely,
LymeDad
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I just love LymeDad.
While family support is great,
If you don't get it from your biological family,
Come here and get it from your Lyme Family.
Give your family the information.
I had to change my relationships with family members who don't get it.
(Never really tried).
Father, sisters, etc.
I still speak with them on occasion, but our relationship has changed.
I don't explain any more. Two years plus of treatment and still going.
Plenty of time to have even looked it up on the internet.
I think that they don't want to understand and that is okay too.
I can still love them and have a different relationship with them.
I come here for friendship, support and love.
I consider all here my friends and Angels that God has surrounded me with.
In fact when I speak of posts or threads I find myself
Saying that I spoke with my friend in (blank) state
And he/she said (blank).
I tell people that I have friends all over this country.
The greatest people I've ever had the honor of knowing.
Please know that as long as you are here, you are never alone
And never with out support.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Lymedad, you said it all!
What a great note, your a good dad,l keep taking care of her.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Like BettyG said..
"view UNDER OUR SKIN lyme dvd documentary as a family and then discuss it aftewards..."
For some reason seeing it on their own TV is more impressive than all the medical reports combined.
Glad we have Under Our Skin to make the points for us.
posted
Someone mentioned that family members had sent them some spiritual stuff it reminded me of something that I totally forgot. Thinking about it, I broke out in laughter.
First I'd like to add this is not intended to offend anyone.
It probably had been 2 years after I had been disabling sick looking for answers. My sister-in-law told me that I Jesus had made me sick because I turned away from him 3 years before.
She said he was punishing me. Too funny. I've always had God in my heart and life. Just not the way she thinks it should be.
I hope that brought a smile to your face.
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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posted
I love the letter above, it is awesome, however a few things are of concern to me:
quote:She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).
quote:She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).
I can relate to all of the above, as I have experienced all of them, I havn't had the diagnosis of Lupus or MS, or at least not yet, but I get terrible anxiety. It sits in my chest, it goes into my head, and most recently, I'm feeling it in my stomach.
The past few days, I've been freezing especially in the morning. My temp is 96.0 and I wake up shaking and shivering. Part of the shaking is from the cold and the other part seems to be not from the cold if that makes sense.
This afternoon, out of nowhere, I got this surge of "I'm feeling better". I reported this to my husband and even sent an email to my father. Less than an hour later, I was told dinner was ready and I walked down the steps and as soon as I sat down, it was like someone flipped a switch and all of a sudden I couldn't keep my eyes open. I'm like, what the heck ?
I made it through dinner and excused myself to go take a nap, which I rarely do, even though I'm always feeling tired, but this was different. I couldn't keep my eyes open. So, I go lay down and once again I'm shaking while in bed, I close my eyes and the room is spinning, and I feel intense anxiety in my chest.
I'm asking myself, how the heck can I be anxious when I can barely keep my eyes open ? I was sedated as if someone had given my 5mg of Xanax or something, yet I'm laying there anxious. I guess this is more herxing.
How can I explain to others what I even don't understand ?
I quoted the letter only because it didn't mention Anxiety, but it did address Psychosis, so I guess I'm covered.
Thank you everyone so much for posting back to me. You guys are great support. I apparently have a bad case of the disease, but I will fight it to the end, whatever it takes. The pain doesn't bother me so much as the neuro stuff.
Please keep posting so I can let my Family and Friends read your words.
Greatfully,
Shannon
Posts: 32 | From DC | Registered: Jan 2009
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Your post brought back sad memories that are, unfortunately, more common than not. I'm ashamed to say that I was one of those doubters when I first fell ill to Lyme disease: I had believed much of the hype and made assumptions on that basis.
I think the first step is finding a good doctor; someone who is both Lyme literate and capable of explaining the various afflictions you're suffering from. Unlike many others who suffer from Lyme, I am not prone to doing copious research on my own (I find the medical aspect extremely boring) and prefer to leave that to the professionals.
Others have offered excellent advice (here) and I'd urge you to take full advantage of the options they've listed. I know, for me, one of the most powerful testimonies was a u-tube video by a young lady (http://www.youtube.com/watch?v=jHLqs28dItM). I believe she has other videos up as well.
Not wanting to bring trouble, I'll PM you with other thoughts.
Posts: 31 | From New Jersey | Registered: Jun 2007
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posted
Shannon, I have found it's easiest for people to understand when I medically explain to people what may be going on - what the bug is like, what symptoms it causes, what treatments we do for it.
There is a huge list of Lyme symptoms, btw, at www.anapsid.org - scroll down and click on the Lyme Disease box, then click on Diagnosis, then Master Symptoms.
Now a question for others on the board: I just checked on this master list of symptoms, and saw in the autonomic symptoms list that it includes fever, chills and sweats.
Yet I was under the impression that night sweats and chills Shannon is mentioning above can indicate the presence of a coinfection, babesia.
When someone describes symptoms like that, is there any subjective way to distinguish between Lyme and babesia, or do folks basically have to get tested? Even then, I understand that tests for babesia may not come back positive right away.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I am so with you here! My family thinks if I "think about something else" it will go away!
Pretty sure the swelling in my knees won't go away if I think about something else. I don't think my hearing will come back by thinking of something else.
I don't think my chills and fatigue and sever joint and body pain will go away by thinking of something else!
I'm sorry you are going through this... It just makes being sick even harder!
posted
Under Our Skin and Cure Unknown are prob the 2 best ways I can think of to educate others
If they don't "get it" after seeing the movie or reading the book, I don't know if there is much else to do.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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