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Old 03-14-2007, 12:02 PM   #1
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Question 4 Years of struggles any help I would appreciate it.

Hello everyone,

I come to this board after years of trying to figure out what is wrong with me. I have had many strange symptoms for about 4 years now and I have seen many different specialist al with no real diagnosis. I have seen a rheumatologist, infectious disease specialist, neurologist, allergist, and a few different internist. All of my blood work comes up pretty clear, the only thing that was found was a mycoplasma infection by the infectious disease specialist, I took antibiotics for several months and my mycoplasma infection cleared but that did not fix any of the symptoms that I had before or after the mycoplasma infection. I donít know where to turn at this point and the pain and irritation I feel is unbearable, I have been prescribed antidepressants and pain medication all which have helped only slightly. The only thing that seems to help is NSAIDís like Aleve, any help would be appreciated. The worst part of my symptoms of the severe irritation and inflammation I can handle the pain.

These are some of my symptoms

After working out really hard a day or two later my symptoms get really bad, this happens when
my body feels really sore, and then the inflammation and irritation doubles

If I sweat sometimes a day or two later my symptoms will be very strong, I occasionally have
night sweats,

I feel really hot at times, certain parts of my body will feel like it is burning up but my temp is
normal,

I also feel like in a dream like state at times, unable to concentrate, think normally or remember
I feel as if I am totally out of it, I also feel dizzy at times, definite mental affects

Seems that the issue is more do to with my skin, this is from head to toe, palms and finger tips
feel irritated and harden up and texture changes and also have severe burning shooting pain, this is
the same feeling I have in my gums and feet and elsewhere on my body

Eyes lids and eye feels irritated at times as well, same irritating feeling I feel in my hands

Extreme pain that shoots from place to place, feels like burning sensation and extremely irritating
area of my skin feel extremely sore, that is where the pain exists, also feel cool burning pain at times

When I pinch my skin in the are that has the pain It feels extremely painful and sore, this is also the
same areas I feel the irritation, this is all over my body

I have noticed that gum inflammation and pain only occurs when the rest of the body becomes
inflamed, my face is one of the worst area of pain,

Also my gums feel as if there is pressure on them at times, gums pain is very server and the
irritation is unbearable,

The inside of my mouth I can feel a texture change at times, like little bumps, slightly swollen
sometimes rough patches, this can be viewed with a clear light flash light, with my tongue I can
fell these texture changes on my lips, gums and cheeks



I feel that if the issue can be figured out why my skin is hardening up on my finger tips and why
there is soreness in my skin and fatty tissue an answer can be found.

Sometimes I have twitching and feeling of cold water splashing on skin, or other strange sensations
so there are nerve issues from time to time as well

At times I notice my heart rate jump up and I feel hyper, this happens before I get the severe attacks

Left side lymph node under chin swells up and has pain from time to time, ear pain also exists

Major soreness and pain on scalp mostly consistent on the top right side, but happens all over

Bitter taste in mouth and sometimes white film on tongue and or lips forms

Feeling very very tired and worn out on some days and some days feeling energized

 
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Old 03-14-2007, 01:11 PM   #2
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Re: 4 Years of struggles any help I would appreciate it.

Hi mainman, welcome to the board.

I am sorry you have been so sick, I know it is frustrating. I highly recommend that you get evaluated for tick-borne illnesses by a Lyme knowledgeable doctor.

Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It can cause many seemingly unrleated symptoms. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and 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.

Since you had Mycoplasma, it is very possible you have other tick-borne illneeses. The co-infection Babesiosis can cause night sweats and heart palpitations. Lyme disease and Bartonella can cause swollen lymph nodes.

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.

I also suggest having your thyroid tested. Ask for the Free T3, Free T4 (besides the T3, T4) and thyroid antibody tests in addition to the normal panel. They are not usually done but are necessary for a comprehensive view. Some people who have Lyme also have a thyroid disorder.

If you would like a doctor recommendation, let me know. Don't give up, you will find out what is wrong.

 
Old 03-14-2007, 08:50 PM   #3
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Re: 4 Years of struggles any help I would appreciate it.

Antibiotics can totally mess up your stomach, so I suggest taking a really good probiotic to fix it. A good probiotic may ease some of your symptoms.

 
Old 03-15-2007, 06:23 AM   #4
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Re: 4 Years of struggles any help I would appreciate it.

Hello,

I thank you all for your responses, I greatly appreciate it. Ticker I had a question in regards to lyme, what is actually used to treat it as I am taking antibiotics (tetracycline 500mg twice daily). Also does lyme cause gum problems? I seem to have a lot of gum inflammation and did see dentists and had scaling and some more treatment but with no avail.
It seems like my skin, gums, eyes and outer areas of my body are extremely irritated and inflamed. I will look into getting a probiotic as well.

Also if you do know of a reputable lyme doctor please do send me some information. I did get tested for lyme a few times but I was tested with ***** diagnostics. I thank you all for taking the time to post to me, thanks once again

 
Old 03-15-2007, 06:42 AM   #5
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Re: 4 Years of struggles any help I would appreciate it.

Hi mainman. I agree that when taking antibiotics it is good to take high-quality acidophilus. The best ones to get are refrigerated. Most healthfood stores have them. Wait at least two hours before or after taking the antibiotics to take the acidophilus.

Lyme disease is treated with high dose antibiotics. Tetracycline may be used in some cases, but I think the dose would be higher than what you are taking. I don't know if gum problems could be Lyme related, but I know that teeth problems can be. Before I was diagnosed, my teeth became extremely sensitive when they had never been before. I saw several dentists and no cause was found. I think it was nerve related. It resolved when I was treated for Lyme.

Realize that no Lyme test is completely reliable. Regarding the Western Blot, the CDC requires a large number of bands to show for it to be considered positive yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme. It is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA. They have more sensitive tests and list more bands on the Western Blot. Testing should be used as an aid in diagnosis not solely for diagnosis. A lyme knowledgeable doctor will not rely solely on test results to diagnose tick-borne illnesses.

I know of three Lyme doctors in the MD/DC area: Dr. Kenneth Singleton in Towson, MD comes highly recommended. The other two doctors are Dr. Mark Garzon in DC and Dr. Elizabeth Lucas in Timonium, MD. All I know about them is that they are supposed to be Lyme knowledgeable.

Good luck! Keep us posted on how you are doing okay?

 
Old 03-15-2007, 09:37 AM   #6
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Re: 4 Years of struggles any help I would appreciate it.

Thanks a ton ticker, I will setup an appointment with one fo those specialist asap and see what they have to offer. I am also going to Georgetown University to get evaluated as well, basically getting a second opinion and see if they can come up with any ideas as to what is wrong with me. I will update everyone on my journey.

 
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Old 03-15-2007, 10:05 AM   #7
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Re: 4 Years of struggles any help I would appreciate it.

Ticker do you have any contact information for any of the doctors you listed, I am having a hard time trying to get info on them.

 
Old 03-15-2007, 11:19 AM   #8
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Re: 4 Years of struggles any help I would appreciate it.

Hi mainman have you tried calling information?

 
Old 03-15-2007, 02:13 PM   #9
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Re: 4 Years of struggles any help I would appreciate it.

mainman, i am new to the board. i just read your post. in the beginning u said u worked out and did a lot of sweating, when u do that u lose salt and if u don't replenish it over the course of time it can cause problems. i worked out for a number of years and did a lot of sweating. thought it was good for me but found out that it could effect u in ways u wouldn't think. look into "SEA SALT" not the table salt, that stuff will kill u.

Last edited by edeb; 03-15-2007 at 02:14 PM. Reason: taking out quote

 
Old 03-16-2007, 11:34 AM   #10
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Re: 4 Years of struggles any help I would appreciate it.

Hello,

Does anyone knwo where I can find any more Lyme specialist as I am having a hard time locating the ones ticker sent to me, I would like to find a doctor that also accepts insurance as cost is a big issue for me. Also does anyone know of any fibromyalgia experts in the washington dc area as well, I think I would also liek to see someone who has experience in that field as well. I thank everyone for their time to respond back.

 
Old 03-16-2007, 01:55 PM   #11
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Re: 4 Years of struggles any help I would appreciate it.

Hi mainman. Most Lyme doctors do not take insurance because often they do not get reimbursed. You can pay for the visits and submit them to your company for what they will pay. You could call ahead of time to see what they would cover. I know it is difficult, but your health is the most important thing.

Good luck.

 
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