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Posted 4/6/2009 7:49 AM (GMT 0)
Hi Guys excuse me if this is a bit of a long post. Im not sure if i have lyme and to be honest already kinda ruled it out as i was bitten by a tick in West virginia approx 8 years ago.... between the 8 years and 6 months ago ive had night sweats 3 times + a week. I constantly overheated/sweat ALOT and generally was nackered. the night sweats/sweating has now stopped since the attack 6 months ago (see below)

===============
Since then i have kind of slowly been going down hill but only recently been having major issues.I basically woke up one day after a night drinking and started having dizziness/palps etc. This is the word doc i have compiled listing my problems..

Approx 6 months ago after a night out drinking I woke up. I became dizzy and my vision started to go. I ended up having a panic attack and being taken to hospital with heart palps.

The dizziness and heart palps lasted for approx 3-4 weeks. Every so often the dizziness would become more severe and I would again fall into a panic like state.

After about 2 weeks the dizziness turned to vision problems and I was unable to read anything.

After being laid up in bed for 3-4 weeks and cutting my diet right down to forage type foods I was able to return to work.

I still suffer dizziness daily whilst working which impacts my work dramatically. If I drink have more than 1 pint I suffer the next day. If I have more than 5 pints I am unable to leave my bed.

My current/lasting symptoms are
- slight loss of feeling in my right arm ( my right arm initially tingled when this all started)
- Constantly dizzy whilst sitting upright.
- Pain and pressure at the base of my skull
- Pain upon pressing my sternocleidomastoid
- Pain upon pressing my trapezius muscles
- what seems to be muscular pain down my right hand side mainly where my bowel meets my rib cage. is.
- constant diarrhoea (niiice I know)
- I have 2+ large knots. The main being under my right shoulderblade


Tests
MRI on brain - Results showed a void – scan with contrast confirmed not cancer etc (docs said it should be nothing to worry about).
Countless blood tests – 1 slight elevated bi rubiflavin (nothing to worry about)
Neck x-ray – spine looks fine however part of my neck is straightened “possibly due to muscle tension”
Gall bladder ultrasound – clear
Sigmoidoscopy – clear.
Gluten/wheat allergy test. – this test may not of been 100 percent, as I was steering clear of these types of food up until approx 4-5 days before the test in which I ate gluten/wheat containing foods. However im pretty sure I don’t have an allergy.
==============

As i write this today ive got dizziness, loss of feeling in right arm and back/neck pain.

Now my doctors have been very thotough and im not sure theres a lot else they can do except refer me to a neuro. Lyme hasnt really been braught up in discussion as we dont have lyme over here UK. I also dont particularly want to bring it up because at the moment i sound like a hypochondriact which sux.


If anyone has a clue please help.

Thankyou.
Posted 4/6/2009 8:01 AM (GMT 0)
Kinda sounds familiar. Try getting a Lyme test. Keep in mind that the test is not 100% reliable.
Posted 4/6/2009 8:04 AM (GMT 0)
Thanks for the reply. to be honest im not sure where id go for a test. As i said im a bit concerned at suggesting lyme to my doctor as ive been through so many tests trying to figure out whats going on and im starting to feel like an absolute hypochondriact. Im sure im not a hypochondriact because im a very rational type of person... is there anything i could take/do to help without pestering my doctor?
Posted 4/6/2009 11:54 AM (GMT 0)

Hi lazynewt, welcome to the board!

I am sorry you have been so sick.  Below is a Lyme disease 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 knowledgeable 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.  

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many 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.  I am not a medical professional, but to me many of your symptoms sound like they couild be from Lyme and Babesiosis.  Some of the hallmark symptoms of Babesiosis are night sweats, heart palpitations, and dizziness.

You can call IgeneX Lab at 800-832-3200 and ask them to send you a testing kit.  You can take the kit to a doctor who is willing to draw the blood and send it in.  The results will be reported to the doctor.

If you need a doctor recommendation, you can email me at [email protected]  

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD.

I hope you can get answers soon.


Post Edited (ticker) : 4/7/2009 5:39:08 AM (GMT-6)

Posted 4/6/2009 4:03 PM (GMT 0)

I'll go ahead and post this link -

http://www.lymebook.com/africa-europe-canada-sweden-england-uk-united-kingdom

Making too many assumptions about what it can't be is one of the things that slows down diagnosis. 

Here's the IgeneX web site which has a lot of good info.

http://igenex.com/Website/

Posted 4/7/2009 7:33 AM (GMT 0)
Thanks for the replies guys. I will speak with the ENT about this when i see him. To be honest im just a bit scared of sounding crazy. After all ive had a shed load of tests for everything and just about everything bar the kitchen sink has been ruled out.. The symptoms i have are

==============
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Swollen glands
Sore throat
pelvic 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
Heart palpitations, pulse skips, heart block
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 in right arm.
Eyes/Vision: double, blurry, increased floaters,
constant light sensitivity
vertigo poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
==================================

Im kinda swaying to the possability that i might have lyme.. My bigest question is could it really and is it likely to of not bothered me too much for the past 7 years and now raised its ugly head??

The following are the symptoms ive had for a good few years now. But ive kind of grinned and beared it as my doctor told me that its just part of getting older and some people get problems as they get older.

Unexplained fevers, sweats, chills, or flushing
Fatigue, tiredness, poor stamina
Sore throat
Sexual dysfunction or loss of libido ????????
Change in bowel function-constipation, diarrhea
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
constant light sensitivity
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol


Thanks for the help and the links :)
Posted 4/7/2009 8:01 AM (GMT 0)
Something else id like to note is that i used to take tetracycline (antibiotics) for a good few years.. Might this of dulled the symptoms??
Posted 4/7/2009 11:49 AM (GMT 0)

Hi lazynewt. I edited my post above to list Dr. Burrascano's more recent treatment guidelines.

Many people who have Lyme have had it for a long time before getting diagnosed.  Sometimes people can keep the symptoms at bay until their immune system is additionally stressed such as from an illness, accident, divorce, etc.  I think it is possible that the antibiotics you took could have helped somewhat.

Many people who have Lyme are often tested for just about everything else also.  Doctors often do not consider Lyme disease as a possibility.  Of course it is good to have other things checked.

I recommend that you be evaluated by a Lyme knoweldgeable doctor and get tested by a Lyme lab such as IgeneX.  Many doctors will run the ELISA or titer test which is the least reliable test for Lyme. 

Posted 4/7/2009 1:29 PM (GMT 0)
Thanks Ticker. My only problem is im based in The UK. where ow where to find a doc thats knowledgeable of Lyme..
I will read the pdf as soon as i get back from work. Thanks. If anyone has any diet/suplement advice etc that might help me until i can get this thing sorted id appreciate it. I will look for a lyme lab in the Uk straight away also.

Thanks Ticker.
Posted 4/7/2009 10:03 PM (GMT 0)

Hi lazynewt.  Dr. B. discusses diet and supplement recommendations starting at the bottom of page 27. 

Many people who have Lyme benefit from cutting out sugar, white flour products, and processed foods.  Exercising whenever possible, doing things to strengthen the immune system, and detoxing are very important.

I know of a couple of Lyme doctors in the UK.  You can email me if you would like their names.

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