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Very Sick-Might Be Lyme Disease-Help!

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Old 08-29-2008, 08:13 AM   #1
Join Date: Aug 2008
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astriapage1 HB User
Very Sick-Might Be Lyme Disease-Help!

Hello Everyone
To Start Off-I just had open heart surgery 12 weeks ago for severe mitral valve damage-they a originally thought that it was endocarditis and had me on 9 weeks of IV antibiotics before the surgery. After the surgery they said that there was no infection in the valve as originally thought-but severe damage-about to have heart failure.
Before that I had been sick for 2 years with fever, which gradually got higher and higher, pain-especially lower right abdominal pain and joint pain, especially knee. Extreme fatigue-I just feel like I have the flu everyday.
My main other symptom is pschological. Depression,severe anxiety and I am beginning to have memory loss, etc. I feel like I am developing alzheimers. Note I am only 30 years old-I am not saying I have alzheimers-that is just the way I feel-I am having a hard time spelling and communicating-which I used to be very good at.
My current fever averages 102 on Tylenol, ibuprofen etc. I have floaters in my eyes.

I used to be an avid hiker-outdoors girl-So yes I was bitten by ticks. But I have also read it can be transmitted by mosquitos.
I have lived in Florida for 4 years-and I am from NC before that.

After my surgery I was on 3 weeks of IV Rosephin and oral Doxycylcline and I kind of got better-like my symptoms were getting better-I still had low grade fever. But now it is getting out of hand again. I can not tell you how hard it is to write this-something that used to be so easy and should be easy. I also need to mention that I have-darn I just came here to edit this and I can't remember what I was going to say. I want to scream!
The doctors have basically given up on me-I am a mystery case. I just remembered that I lost half of my tooth yesterday-which is highly unusual-i take very good care of my teeth-you can tell it is just rotted out-it just adds to my pain!

If anyone can help me it would be appreciated.

Last edited by astriapage1; 08-29-2008 at 08:51 AM. Reason: Forgot some things

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Old 08-29-2008, 07:54 PM   #2
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luckeeluke HB User
Re: Very Sick-Might Be Lyme Disease-Help!

Have you had any Lyme tests yet? Westerm blot test? Lyme can cause heart issues in some people. I'm not sure of the specifics on that, but I know it can cause heart issues.

Hang in there and find some doctors that will listen and work with you. Otherwise it's like hitting a brick wall over and over again.

Old 08-30-2008, 05:15 AM   #3
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astriapage1 HB User
Re: Very Sick-Might Be Lyme Disease-Help!

After you have been to 30 doctors you just want to give up. I have applied for disability and was just denied! Without the disablity I do not qualify for Medicaid-which really makes it hard to find a doctor-I have been fortunate to get the treatment I have without insurance-I now owe over 1 million dollars in medical bills-and have lawyers hunting me down-I truly cannot work-the worst now are the brain issues-plus the high fevers-I am so stuck!

Old 08-30-2008, 07:21 AM   #4
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Re: Very Sick-Might Be Lyme Disease-Help!

Sorry you are going through all of this. If you have been bitten by ticks or mosquitos then there is a very strong possiblity that you have Lyme. Your symptoms sound like it. But then there are other bacteria's that can cause these symptoms also. I know you are in a tight squeeze for money. But I agree somehow you need to get a western blot test done. See what types of bands are pulled up. Going through the lab Igenex is the best. But no test for lyme is accurate.

Possibly there is a Medical clinic in your area you can go too? I think that would be better than nothing. The best thing, if you can find some finincial help is to get to a Lyme Literate Medical Doctor. (LLMD). They will go on symptoms and not solely on test results.

I am so sorry you are this ill. Many of us understand about going to numerous doctors before we find help. Have you looked at the thread at the top, the one that says "doctors and clinics" look through that and see if there is a lyme specialist in your area. If you don't find one post a new thread asking for a doctor in your area.

You might also try searching on the computer for a Lyme support group in your area. Maybe you can find someone to talk to in your area.

You have fevers and many aches and pains. Doesn't take a brain specialist to see you have something bacterial or viral going on.

Let us know how you are doing.

Old 08-30-2008, 07:44 AM   #5
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luckeeluke HB User
Re: Very Sick-Might Be Lyme Disease-Help!

Originally Posted by astriapage1 View Post
After you have been to 30 doctors you just want to give up.
I have not been through the hell that it sounds like you have been though/are going through. It does sound like you are really in a rock and a hard place. Everyone's got their own special case, symptoms, hell, etc. If you think it's Lyme, as you already have mentioned you thought that's what it might be, keep pursuing it whatever way you can.

If you look at it from a different angle, it may help. Keep trying to go through the doctors, getting answers, getting Lyme and other tests, and getting anitbiotics if they help. However in the mean time while waiting for results from that end of things, maybe you should go a more natural route and try some herbs that have had success with Lyme, co-infections, and other bacterial infections. It can be cheaper than antibiotics. I almost think some of the herbs can work just as well as some of the antibiotics or work well in conjunction with anitbiotics.

You can try the herb protocols in this book. If they work they work, if not then they don't. Start slow and work your way up. You may feel worse while doing them, which can be normal with Lyme. I suppose some folks can have allergic reactions to herbs as well- just keep that in mind. It's worth a shot at this point. If it's not Lyme then it sounds like from what the doctors initially diagnosed, it might be some sort of bacterial cause or major complication from bacteria.

I always tell people about this book, because I think it's a great book to read and have in one's arsenal. It's got a lot of good references and was written by a master herbalist. I don't know the author at all; I'm not trying to sell it or anything. I did contact the author to ask a few questions though and he was extremely helpful.

Antibiotics are good but when you combine antibiotics with herbs, I really think that's the way to go. Just my laymans opinion though.

Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections: Stephen Harrod Buhner

Just some thoughts. If you aren't getting any help from docs and insurance right now then you might have to try something else in the meantime.

Try and find the smallest positive thing each day and focus on that. I know it's easier said than done. I also know from my own experiences and what I've read, you don't start to think/feel more positive until you feel better mentally/physically. If your in a limbo stage of sorts then you can't feel better, espcially with Lyme. There is so much back and forth with the symptoms too, you feel better one day the next you don't, it really degrades you over time. Sometimes for weeks on end I feel awful. Sometimes only days or hours. Messed up for sure.

I wish you luck with your search for answers.

Last edited by luckeeluke; 08-30-2008 at 07:49 AM.

Old 08-30-2008, 09:48 AM   #6
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astriapage1 HB User
Re: Very Sick-Might Be Lyme Disease-Help!

Hey Guys
I really appreciate your help-I forgot to mention ofn course that I have recently developed Bell's Palsy-the only doctor I have right now is my Cardiologist-but he is about to give up on me! I am trying to convince him of the Lyme-I pulled up a 40 symptom checklist and I had all of them except milk production in the breasts-I have also had a hysterectomy trying to solve the abdominal pain!
I have read that you can take high doses of salt and Vitamin C-Does anyone know about this? I think I am going to try it-what do I have to lose?

I can not thank you enough for your help!

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