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Old 05-25-2007, 12:24 PM   #1
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nightphoenix HB User
New here, Lyme disease or something else? Please help.....

Hello, I've just registered here and need some feedback from people who've had Lyme disease. I'll try to make this as short as I can....it all started (or I think it did, but now I'm not sure) in January when I got that "coming down with something" feeling. I began to notice a mild aching pain in my stomach and began burping a whole lot. (I know symptoms of acid reflux and ulcers but this WILL fit in with Lyme just bear with me) By February I started to become more and more fatigued and the stomach pain got a little worse. My appetite began lessen and by the end of march I was having severe nausea and some pretty decent stomach pain. Then one morning I woke up with chest pains, "tingly" pains in my back and left arm and trouble breathing...rushed to the ER, they did all the basic ER workups and was told I was in good health just probably had a virus infection. If not better in a few days see my doctor. (didn't have one at the time)

After 2 weeks not much better went to urgent care (different hospital) did more blood work...this is when they got me to thinking about any symptoms I might have had BEFORE the onset in Feb/March. I got to thinking back and remember that first in Nov. I had a HORRIBLE case of norovirus/stomach flue whatever they call it now days. The most violent vomiting I can ever remmeber....couldn't drink water for 24 hours......took 10 days to fully recover. (had to cancel Thanskgiving) I also began to think back and noticed that over the last year or so I got cold alot easier than I used too. I never used to get cold, could take the cold really well...now after a morning of physical activity I'd be chilled, even if it was 70 degrees outside. I also realized that the fatigued feeling started back in the summer of 2006, and really kicked in in Fall of 2006. They did Thyroid tests, and everything else under the sun including a Lyme test (at my request)....all came back "normal"!

So i finally got in with a new family doctor, and was put on Prevacid for the stomach pain. And it helped....after about 3 weeks the ulcer/acid reflux pain was pretty much gone. BUT I began to have new symptoms....one being a FEELING that my whole body was shaking....or like I was havign muscle contractions....very tiny ones all over.....I call it the heebie geebies or someone else called it "the jitters".....there is no visible movement and no one can feel it, but I feel it. Once or twice it felt more like I could feel the blood rushing through my veins....but mostly its a jittery feeling.

The problem is even though the stomach pain and reflux is basically gone, I'm still incredibly fatigued...I've literally been house boudn for 2 months now...the first month I didn't have the energy to get up to use the restroom...I'd have to psych myself up to get up....I'm not that bad now but a brief walk outside and I'm finished for the day. The jitters remain...sometimes hardly noticable sometimes very....it depends. But basically I started getting better day by day.

Then last week I at a little bit of yogurt....and started to feel bad again....(didn't notice this feeling before when I had milk with a bit of cereal though) Then 5 days ago I lost my appetite...then 3 days ago I took a turn for the worse when I woke in at 4:30am with extreme upper right abdomenal pain and shoulder pain....rushed to the ER again.....more blood work, more X-rays and an ultrasound to check gall bladder....everything normal. They ran a second Lyme test, and it came back normal again. I was told I had musculoskeletol pain because the pain would worsen when I would move my shoulder or when I would breath...kinda like bruised ribs...every breath it would hurt, I was told that didn't sound like gall bladder....they gave me a pain shot and some meds...and no pain today. Still have little appetite, but not terrible feeling like a few days ago.

the ER doc was pretty sure it sounded like Lyme but the test came back normal. After reading some more the last couple days about Lyme I tried to think back to other possible symtoms...and I noticed that last summer I had a rash on my right foot. Red, but not bright red, and sort of scaly looking...it itched...after a couple months it went away. But last fall I started feeling more tired....I also at times had some tingly feelings in my hands or arms...but thought it was just because I was sleeping on my arm or shoulder...(maybe it was). I've also noticed some twitches in my face and eye area...but nothing bad.

Now all the doctors have asked about stress...and I HAVE been under extreme stress for the last year or more....but I don't believe stress can be causing ALL of these different things. Nor do I believe ulcers or acid reflux can be causing it all. (the ER doc agreed) Maybe gall bladder could, I don't know....but I've never been sick until recently...or at most the last year. Since going on the Prevacid I've also experienced joint pain, muscle pain in other places....

I'm also now running a temperature below 98.6....sometimes 98, but most of the time in the low 97's....is any or all of this consistent with Lyme? The docs are relying on the tests but I dunno what to do........

please help.......

 
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Old 05-25-2007, 01:08 PM   #2
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Join Date: Mar 2007
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sarah92202 HB User
Re: New here, Lyme disease or something else? Please help.....

nightphoenix, your symptoms are consistant with Lyme, and you pepbably were only tested by the Elisa which is a very inaccurate test. You need to see a Lyme Literate MD (LLMD) and be tested for Lyme and co-infections by Igenex labs. Most of the people on this board suffered for years with Lyme after having neg. Elisa's. Myself and son included. Wisconson has become an endemic state for Lyme. I know several people with Lyme that live there. You can look through the list of LLMD's on this board, I know there are a few in Wisconson. Don't see any other doc except an LLMD refered by this board for proper lyme testing. I do know there is an LLMD in Eagle River named Dr. Hoffman, but he is currently under investigation by the WI Dept. of Licensing & Regulation and the WI Med. Examinars Board. Do not let this scare you away from seeing an LLMD, unfortunately they put their med. licenses on the line to treat lyme patients. research everything you can about Lyme and you will understand. The more you know the better you will be prepared to get yourself diag. and treated. Sincerely, Sarah

 
Old 05-25-2007, 01:44 PM   #3
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: New here, Lyme disease or something else? Please help.....

Hi nightphoenix, welcome to the board!

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first. Is this the test you had done?

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

If you need a doctor recommendation, let us know.

Regarding your thyroid, I suggest that you have your Free T3, Free T4 (besides the T3 and T4) and thyroid antibodies tested in addition to the normal panel. They are not usually done but are necessary for a comprehensive view. If you need help interpreting your results, let me know. Some people, including myself, have Lyme disease and a thyroid disorder. Many symptoms of both can overlap.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Hang in there okay?

 
Old 05-26-2007, 09:49 AM   #4
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nightphoenix HB User
Re: New here, Lyme disease or something else? Please help.....

Quote:
Originally Posted by ticker View Post
Hi nightphoenix, welcome to the board!



When Lyme disease is a possibility, it is very important to see a knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first. Is this the test you had done?
I'm not sure! All the doctors I've been too are very secretive about what tests I've had, and what they suspect might be wrong. I'm going to try and find out today, or Tuesday just what test they ran.

I've had almost all of those symptoms you've listed with only a few exceptions at some point over the last year. One of the reasons I suspect Lyme is because there are very few illnesses left that could explain the vast differences in symptoms I've had. I also have this continuous twitching in my calf muscles....it never goes away. Its not painful and I've had it for a few years (long before I noticed other problems)...so maybe I've had Lyme longer than I even suspect. My family doctor is stumped and is sending me to some sort of internist or something....but I just got the appointment date, and that's not until July 25th!!! What am I supposed to do between now and then? I've been so sick for so long I feel like I won't make it until then. I literally do nothing all day because I'm unable too.

I'll try and find out what Thyroid test they ran too....I'm sure they only ran one kind and not anything else.

Thanks for all the information I'll definitely try and find out what test was run....and my dad knows someone who was treated for Lyme but got negative results on their tests....and they got better after treatment. So maybe I'll see if I can get that doctor's name. (although sadly they practically killed the guy while treating something else)

Thanks for the information and the support.

 
Old 05-26-2007, 01:31 PM   #5
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: New here, Lyme disease or something else? Please help.....

Hi nightphoenix. In my opinion, the most important thing that someone who has Lyme or may have Lyme can do is to see a Lyme knowledgeable doctor. There are not many in the country.

In WI, I have heard these doctors are knowledgeable about Lyme, but I do not know if it is true: Dr. Waisbren, Waisbren Clinic Milwaukee, WI; Dr. Steven Meress Fon Du Lac, WI, Dr. Hoffmann, Eagle River, WI. Maybe you could start a post asking if anyone has seen a Lyme doctor in WI.

I highly recommend that you make an appointment with a Lyme doctor and be tested for all the co-infections.

I also recommend getting those thyroid tests done. Thyroid disorders and Lyme can both cause lower-than-average body temperatures.

 
Old 05-26-2007, 02:53 PM   #6
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Posts: 171
ktp812 HB User
Re: New here, Lyme disease or something else? Please help.....

nightphoenix

I had to reply to your post because I too have continous calf twitching and have had it for almost 3 years. I had horrible calf cramping before the twitching and then all the other symptoms appeared within 3 weeks. I was sent to neurologists and had every test you can imagine except the WB and CD-57. I was diagnosed with Lyme in November 2006-2 years after my first symptoms. I have been on abx since. I was also diagnosed with adrenal insufficiency and hypothyroidism. My twitching is not painful either just annoying at times. I was first diagnosed with CFS and given the name of a psychiatrist. I hope you get the right diagnosis and start treatment soon.
Kim

 
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