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Old 04-11-2012, 11:13 AM   #31
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Re: Invisible illness, very sick.

ya, its very sore dull aches followed by random instense squeezing.cramping pain. at this point i dont care what they tell me it is. I just want answer to it so I can start recovering or live it to the fullest possible. going on 5 months is way to long. summer coming, summer vacations, soccer, baseball i want to be out side with my children feeling free from the crap

 
Old 04-11-2012, 04:40 PM   #32
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Re: Invisible illness, very sick.

I know exactly what you mean. I started to feel sick in November so it's been a little over 5 months for me of feeling very sick. Right now I am laying on the couch with a headache, dry mouth, back pain, neck pain, heart palpitations, muscle twitching and an electric/ tingling sensation on my arms and legs and this flu type feeling that I hate so much . I already know that I am going to start having eye flashes as soon as I close my eyes tonight and night sweats. I feel the same way you do. I need a diagnosis soon so that I can move on and start working on a treatment or enjoy life as much as I can before pulling the plug. My two boys are the ones that keep me going and fighting through this everyday. I would've given up a long time ago if it wasn't for them.

 
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Old 04-12-2012, 09:11 AM   #33
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Re: Invisible illness, very sick.

I have to been in tomorrow morning for a picc line, not sure why yet, nurse left a message for me to 10am appointment for picc line. Waiting to hear from my doctor.

 
Old 04-12-2012, 09:56 AM   #34
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Re: Invisible illness, very sick.

justwannahunt,

You are going through some rough times my friend. If you are going for a picc line, that probably means that they found your problem and it is treatable which is a good thing. Keep your head up and please keep us posted.

 
Old 04-12-2012, 10:03 AM   #35
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Re: Invisible illness, very sick.

I just got off the phone with the doctor....He seems to think its late stage lymes...Not for sure. Wants the picc line in for 28 days..running some pretty strong anti-biotics for aleast 7 days. If I'm not feeling better then he is going to refer me to mayo. No positive lymes, but he just wants to try this. I also have to have another ekg done to see if my heart rate is doing anything funny. I hope this is it...but i'm not 100% sure about this. No signs of lymes in anything including my spinal tap. but will keep my fingers crossed. How you feeling today

 
Old 04-12-2012, 10:30 AM   #36
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Re: Invisible illness, very sick.

I am doing "ok" today. I didn't have a rough night like I thought I would since I was feeling very sick in the evening. I had a little bit of night sweats, a headache and the usual joint and muscular pains.

Man you got me worried there for a second. At least your picc line is not for chemo which is a very good thing!. You know, I am no doctor but if I had to guess I would also say that you have Lyme disease or something of that nature, which is what I think I have as well since I've been bitten by ticks so many times and I also spend a lot of time out in the woods hunting. I've heard that if you have Lyme you will get very sick once they get you started on antibiotic treatment because all the bacteria starts to die off and it gives you some kind of toxic reaction.

I have another appointment on the 30th and hopefully I'll get some answers after all the testing my new doctor wants to do. I know that if he doesn't find anything wrong he is going to refer me to Mayo as well. Keep us posted!

 
Old 04-12-2012, 06:02 PM   #37
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Wink Re: Invisible illness, very sick.

I am keep you in my thoughts and prayers. I am a firm believer in thinking the "patient is always right when they say something is wrong." I don't care how many tests are run-if the aren't the right one, then you have to keep searching. I have something wrong and the doctors tell me "haven't you had every test done under the sun?" I think to myself obviously not the right tests or I would be better. So hang in there.

 
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Old 04-12-2012, 06:20 PM   #38
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Re: Invisible illness, very sick.

Thanks abmarino! You are correct by saying that patient is always right. I've been very sick for a little over 5 months now and still have no answers. I go to work everyday because I have a family that needs my support, but I struggle everyday. Like you said, I've had all kinds of test done but obviously not the right ones. I'm hoping for my new doctor to find the problem because I am running out of energy to keep fighting through this. Thanks again abmarino.

 
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Old 04-13-2012, 02:49 PM   #39
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Talking Re: Invisible illness, very sick.

Keep searching for answers. I have been told by a well known neurologist at ucla that he didn't care where i went(i went to mayo clinic)that that doctor was wrong. Having surgery to take out an umbilical hernia. I keep getting fluid in the abdomen that comes and goes but I have a feeling that it is neuromuscular and so the search goes on. Hopefully, the removal of the hernia will help. Family thinks I dwell on every little thing that I feel and I always say,"you live in my body and see how you like it." Too bad there is not a diagnostic facility you can go to when test and after test has been done and no answers. This is all so draining but have to put my faith in god.
For everyone out there with no answers, please keep the faith that don't let doctors bother you that look at you like you're crazy and say,"up the anxiety meds."

 
Old 04-13-2012, 03:54 PM   #40
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Re: Invisible illness, very sick.

abmarino1,

I know what you mean. My primary doctor tried to give me anxiety meds and I said no. I told her that a lot of my symptoms can be explained by anxiety with exception of the night sweats and the painful lymph nodes. Night sweats and lymph nodes problems mean that there is something wrong. It could be anything like some kind of virus, bacterial infection, cancer, who knows and they need to keep looking until they find the cause. I won't give up until I get a solid answer. I have two little boys that need me around and I will do whatever it takes to make sure that happens. There are some very good doctors out there but most doctors are just a joke. They wasted their time and money by going to med school.

Take care abmarino1 and keep us posted.


Justwannahunt,

How did your picc line go? I hope everything went well.

 
Old 04-14-2012, 04:00 AM   #41
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Re: Invisible illness, very sick.

It went ok, My platelets have dropped to around 115, so there was alot of blood, but everything went fairly smooth, another night of nightsweats and terrible headaches, haven't slept much this week, but hopefully/fingers crossed this will be it. My last ACTH test came back low again, and high very level of protein..not really sure what that means, but I saw my primary yesterday afternoon, who has done a incredible job with me so far, she told me that most Infectious disease doctors really don't believe in chronic lymes, so if this guy is treating me for it, he must really believe that what the problem is. The infectious disease doc told me again, give this treatment 7-10 days and if we don't see any results, he will send me down to mayo. I have a home care nurse coming in a few hours to go over everything with me and take more labs. They are going to come once a week for a dressing change and labs. My wife got suite tickets to the twins game today from her boss, so hopefully I will feel ok this afternoon and we can have a nice little date today. We have a babysitter coming, its been along time since we have done anything together. I know I need it, but she probably needs it more, taking care of me, a 9 yr old, 6 yr old and 2 yr old twins. She's been my rock these last couple of months.

Last edited by justwannahunt; 04-14-2012 at 04:03 AM.

 
Old 04-14-2012, 09:19 AM   #42
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Re: Invisible illness, very sick.

I just happened to be watching Dr. Phil yesterday and he had a woman on there who is very sick with seizures and probably lyme disease. There wer 2 additional women(one is a producer for the Dr.Phil show)who had had lyme disease. There were 2 doctors on there-one from John Hopkins who doesn't believe in Lyme disease and an ****** lady doctor from Southern California who treats lyme disease. The other woman besides the producer woman is a reporter on tv in San Diego who was so so sick. If you are perhaps interested in finding out more, you could probably contact the Dr.Phil show and ask them the name of the doctor in so cal. This doctor is going to treat "pro bono" the woman on the show having such extreme seizures. Thought you might be interested in hearing this. Take good care.

 
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Old 04-14-2012, 06:30 PM   #43
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Re: Invisible illness, very sick.

justwannahunt,

Good to hear that everything went ok. Now go out with your wife and have some fun! You both need it! It is always good to take a break and try to forget about feeling sick. Weather permitting I am planning on taking my boys fishing tomorrow. I haven't been able to do a whole lot with them since I got sick but I don't waste a second of my life if I am feeling "ok" and take the boys out on nature walks, aquarium, wildlife viewing, etc.

A very good friend of mine lives in Minnesota and told me that Lyme disease is rampant up there. Even his dog had it.

abmarino1,

I keep hearing that CA has very good Lyme disease specialists. I wish I lived there because I really believe that I have Lyme. I've been bitten by a lot of ticks! Thanks for the info.

 
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Old 04-16-2012, 11:58 AM   #44
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Re: Invisible illness, very sick.

@mojo--you mentioned that your Vit D is/was "low". How low are you talking about? Are you on D supps?

 
Old 04-16-2012, 12:17 PM   #45
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Re: Invisible illness, very sick.

Fitness Seeker,

I don't recall exactly how low my vitamin D level was but the doctor told me it was really low and placed me on supplements once a week for 8 weeks. I now take over the caounter vitamin D and it helps a little with my pains.

 
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