Officially diagnosed today. Everyone should READ THIS !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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NURSE GARY
Regular Member


Date Joined Jul 2007
Total Posts : 29
   Posted 12/4/2008 8:30 PM (GMT -6)   
Symptoms: 20 mos. ago started with Stiff Neck, Headache, Right Eye Blurryness, constant Nausea

Soon after, symptoms resolved and started having terrible Anxiety, which landed me to several Psychiatrists who couldn't get me well with Antidepressants, Antianxiety meds, etc. In all, I tried over 26 Prescription medications and they all made me sick, the kind of sick where your nauseated all of the time and it made the anxiety worse.

about a year in to all of this I started getting Short of breath for no reason. I was still convinced it was Anxiety as this is what they kept telling me. Here is a short video I made of the Shortness of Breath I experienced daily for the last 9 months or so: http://www.youtube.com/watch?v=dk9M9wVgD1k

I would get breathless just sitting still, but didn't have anxiety with it, then my heart would start to race for no reason. I was put on a Beta Blocker to slow the heart rate, but it didn't work. My heart rate at rest was about 110 and with any exertion would jump to 140's easy. Just yesterday, I went for a stress test and my heart rate went to 170 on the treadmill while just walking fast. I hadn't even began to run. They stopped the test and I could see the Question Mark in a cloud over the cardiologists head. He told me I had ideopathic tachycardia, which means a fast heart rate with no known cause. lol, I could have told him that.

Things really took a bad turn over the last two months:
Chronic fatigue, body aches, Major stiff neck at times, more eye pain, Tremors in my hands and an overall sense of nervousness. Night sweats, and return of anxiety at times. I never had the rash, or at least never saw it.

My Sed Rate was 115 from blood work drawn yesterday. Normal is 0-15. Not one other test is abnormal. Thank god I'm an RN and know a top notch ID Dr. who treats the symptoms and doesn't care about the labs. Nevertheless, he wants to do a Lumbar Puncture and a few more tests which will land me in the hospital over the weekend.

The ironic thing out of all of this is that I lost my 38 y.o. Brother to lung cancer exactly 2 years ago yesterday. I went out to his grave yesterday and cried my eyes out to him to find out what was wrong with me. Less than 24 hours later, I have a diagnosis and have started oral Amoxacillin 1500mg three times per day. Over the past 20 months, besides all of the medications I've tried, I've had the following tests:
Cardiac Catherization, multiple stress tests, pulmonary studies, neurology visits, upper and lower endoscopy, MRI of brain, CT of brain, CT of chest, Tons and tons of blood work, about 30 ER visits or more, 7 Psychiatrists, 5 psychotherapists. I'm sure there is more, but my memory has also been affected from all of this, so I'll leave it at that, but I think you get the idea.

I'm reading that once you start Antibiotics, you get worse before you get better. I can't imagine getting any worse. Can someone please tell me what this means for me. What gets worse ?

I want to end by saying , Don't give up if you think you have Lime Disease. I have at least a year, or so the literature states, before I will be better. I just pray that I get better no matter how long it takes. I want to take my kids to Disney World so bad and get back to life. Losing my brother and having all of this start shortly after losing him has made the last 2 years of my life a living hell. Amazingly, I was never suicidal through it all. I stayed strong, and researched daily until I found out what I had. My family thought I was nuts and obsessed. Well, obsessed yes, nuts, No. I wouldn't wish this on my worst enemy, but it would sure make a nice punishment for serial killers and the like.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 12/4/2008 8:55 PM (GMT -6)   
hey gary,
wow...I am so sorry for the loss of your young brother. I can't imagine! And having something like that along with
lyme is really even harder for you.
Im sorry, did you say that you tested positive for lyme? You sound lyme to me. Classic. I had the chest pains real bad too.
did you also get tested for bart? like at fyi labs?
trying to answer all of your questions...um, get one of your Dr.s to give you Levaquin 25 mg. take one in the morning.
and then see how you feel. man, it worked for me big time.
The lyme just makes things go haywire. You may not really have anything wrong with your heart at all. I say this because of
all the things that they told me were wrong, and when they looked at it, said that my heart looked better than any of theirs.
they had me jog with a live sonogram of my heart. yes I wanted to faint. but it is the lyme. it is a nasty little liar!
and it pretends to be everything else. when it is not, it is just a stupid bacteria that is screwing with you.
you are lucky to be on the amoxy. and is that right???? 1,500 amoxy ...three times a day????
wow, buddy that is some serious abx! My 5 year old was on 1,200 a day. But she weights 44 pounds.
since you are lucky enough to have dr.s that are going to help you...look into getting a IV or even a port, like me, to
get your meds. so that you can in fact stay with the program and not kill your stomach. you are in a good position to beat this
really you are very lucky to have dr.s to help you and who listen to you! and who will give you the abx.
oh about the worse before you get better. that just means that as you are killing off these nasty little burgers that you will
end up with alot of trash to take out. there dead little bodies. so it is a good thing. you will feel sort of tired, and sluggish.
not really worse. it will sort of hit you and then go. some people it is a day or so, they call it herxing. it is a good thing.
you will know it. you wil feel like poop. but just get through it. it is a good thing. many people post detox ideas.
baths and the such. I can't take a bath with my port. or jacuzzi. But others have diet detoxs too. so look into that.
you will be going to Disney with your kids...
If you are having to deal with despair over your brother, this is normal for you to greive. Give yourself time.
it is good to go to his grave and cry your eyes out. You have every right to grieve the loss.
But kiss your kids faces and get better!
Marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 12/4/2008 9:18 PM (GMT -6)   
What WAS the diagnosis, Lyme or a co-infection?? That is a really HIGH sed rate, do they blame that on the Lyme as well?? My sed rate was always normal even though I feel inflamed all over. Intersting. Good luck with your treatment ,Take care ... D

NURSE GARY
Regular Member


Date Joined Jul 2007
Total Posts : 29
   Posted 12/5/2008 12:42 AM (GMT -6)   
It's 1:15 EST right now, and I'd normally be sleeping. Not sure why I'm up, but it would appear that the first dose of Amoxacillin 1500mg is having some kind of effect on me.

It could just be that I'm relieved that I got a diagnosis, but for some reason, my mood has been very elevated tonight which began a few hours after the first dose. The chronic fatigue that I normally feel, and the heavy snoring which makes my wife leave the room each night isn't happening tonight for some reason. Even my resting heart rate which has been around 100 is now sitting at about 85.

I'm not a placebo person. I've tried meds that I swore I thought would make me feel better only to feel worse and have taken meds that I thought would make me feel worse that made me feel better.

So, I think I know now what your talking about when you mentioned taking a big dose of Levoquin. My head is pretty clear right now. I still have the aches and pains, but they are more tolerable with the mood lift. I just hope this roles into tomorrow.

BTW, the only test that came back positive was the Sed Rate. The Doctor I'm using is well known in the Baltimore area. He is considered one of the best Infectious Disease MD's around here and I was fortunate to get him.

For the last 6 years, I have done high tech IV infusion in patients homes, and I took care of many of this Dr. Patients, mostly with Lyme Disease. I'm fortunate to live in the Baltimore area as this Doc. comes from Hopkins and most of his patients are Lyme.

He told me straight up, that he was going to treat my symptoms and not the blood work. Everything I'm reading suggests that when your far into the disease your not going to find Positive blood work in most patients.

Your signature says you've been fighting this for 5 years. Are you still on antibiotics ?

When my brother got lung cancer, I researched and researched for him to try and help him beat it. I found things outside protocol that his Hopkins cancer Doc.'s didn't even know. For example, Celebrex is a cox 2 inhibitor and studies have shown that cox 2 inhibitors inhibit tumor cell growth. I took the research to the "Hopkins Oncologist" and he put my brother right on it. I don't understand these guys. It's like they arn't up on the latest treatment regimens.

I ran into the same problem when this problem first began. I studied anxiety disorders down to the cellular level. The reason I went through 7 Psychiatrists is because they were treating me by protocol. Once again, I would bring in research articles about meds being used off label that were very effective for anxiety / depression, etc. and boom, the Doc. pulls out a Rx and writes the med for me.

Now, I will study Lyme Disease and with the help of everyone here, I hope to be able to help all of you at some point down the road.

It's really not that difficult. The truth is, I did have an anxiety disorder. I also am having fybromyalgia, chronic fatigue syndrome,Stiff Neck with Headaches (Aseptic Meningitis ?) <--Not sure about that one, but it is possible, ST memory loss, Parasthesia,Hyperventilation Syndrome, Sinus Tachycardia (ideopathic) <--- Not ideopathic anymore. It would appear that when you have a host of CNS disorders that come out of nowhere over a short period of time, there is a great likelihood of it being Lyme Disease.

I want to write more, but I want to put it in another post, as I have found a few ways that worked for me to deal with many of these symptoms..

Gary

beths
Veteran Member


Date Joined Aug 2006
Total Posts : 690
   Posted 12/5/2008 7:51 PM (GMT -6)   

Hi Gary-I also live in the baltimore area-I went to Hopkins initially,and they told me I didn't have lyme. I actually had lyme, babesia and bart. Just out of curiosity-PM me who you see at Hopkins> I see Dr S, but he isn't taking new patients, and when people ask me who to see, I don't know who else to tell them. 

Actually, I finished 2 years of abx, and am doing really well. I had a lot of cardiac issues, dizziness, fatigue-and a host of other stuff. Back to my regular life now, but it was a looong 2 years.


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 12/5/2008 8:24 PM (GMT -6)   
Hi Gary, I am glad that you are diganosed and recieveing treatment. I hope your life takes an upswing now as you have been through so much. When I started ABX I felt sicker for a few weeks. I have never been as sick as I was right before diagnosis and during the first two weeks of treatment. I had muscle pain, vertigo, ataxia, headache, memory loss, and terrible fatigue. . . .more but can't remember it all.
Remember to take probiotics and don't eat sugar or high carb food like white bread. Stay away for all alcohol. Take supplements especially magnsium, C, B6 and B12, zinc and a multi. Also good are fish oil and apple cider vinegar (with the mother). Good luck and I look forward to reading what you discover in the progress of recovery.
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