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momto4kids
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/18/2009 1:58 PM (GMT -7)   
Hello everyone!! I'm not sure what is "wrong" with me but I am currently waiting for blood tests to get back that will say weather I have Lyme Disease or Strep and then they also have tested SED rate, which I guess is another one for RA. They have already done blood tests for Lupus and RA, both came back negative/normal.
For a very long time I have sounded like a broken record saying I don't feel good and I think I am getting the flu. I say about year, my husband says it's been more like 3 years. I always have pulled muscles and pains all over. I'm only 30. about 3 months ago I realized that I wasn't able to pick up a gallon of water/milk. My kids climbing on me hurt. Someone trying to just hug me caused pain. I am so tired....just doing simple things such as putting clothes from the washer to the dryer made me feel like I had just ran 200 miles.
The pain was getting so bad that I went to my doctor and begged for something to help me, I can no longer do simple day to day things. I'm a stay at home mom. I have to take care of my kids and home and my husband. I also feel like I have been hit by a Mack truck then a train. I feel like a huge bruise. And I don't know if it's Lyme disease or something else.
I've been told that it sounds like Fibromyalia(sp) too. I really don't know what that is either. I have been reading on both. So if anyone could point me in the right spot I would be thrilled to understand whatever this is. Thanks.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 3/18/2009 3:36 PM (GMT -7)   
Hi momto4kids, I'm sorry you have not been feeling well for so long. I understand all too well because I was misdiagnosed and treated for CFIDS/Fibro for many years and just kept getting progressively worse.

If you do not get an answer from the doctor you are seeing now, I think it's very important that you find a lyme literate doctor who will be able to make a correct diagnosis. The standard lyme tests are not reliable and a doctor who is not lyme literate will usually not make a clinical diagnosis. Even if a non-lyme literate doctor makes a diagnosis, very rarely will they prescribe appropriate treatment.

You can send a message to the e-mail address listed on www.turnthecorner.org and request a list of doctors in your area. Sometimes there are very long waits for an appointment with a llmd so your best bet is to make the first available appointment and then call every day or so and ask if anything opened up due to cancellations.

Good luck and please let us know how you're doing.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 3/18/2009 3:40 PM (GMT -7)   
P.S. - Also try to read the first few threads in this section under "The Basics" and "Lyme Disease Resources".

momto4kids
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/18/2009 5:30 PM (GMT -7)   
Scorpio thanks for giving me that info. I don't know if my doctor knows too much about Lyme disease or not. She did tell me there aren't that many cases of it here in Southern Indiana. What I have read about Lyme disease that somewhat bothered me is that you don't really get rid of the problems. Is this true for every case? Do antibiotics not work? LOL Sorry just trying to figure this all out, and it's been scary so far.

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 3/18/2009 5:31 PM (GMT -7)   

Hi momto4kids, welcome to the board!

I am sorry you have been sick for so long.  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 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.  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. 

If you need a doctor recommendation, you can email me at ko_@bellsouth.net 

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 at http://www.ilads.org/burrascano_0905.html  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.
 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 3/18/2009 5:57 PM (GMT -7)   
momto4kids, Read as much of what Ticker suggested as you can. I was diagnosed not too long ago and do not know as much as others on this site. The one thing I am positive of is that seeing a reputable lyme literate doctor is crucial and wish I would have known more about lyme when I first became sick. The sooner you start treatmet with a llmd the better your chances of a full recovery are.

FMS@23?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/19/2009 1:57 AM (GMT -7)   

Hi momtokids and welcome to the forum. I am extremely sorry to hear of all of your debilitating symptoms and can relate with you in many ways. I am a 24 year old male suffering from many similar symptoms that you are having and I know how painful it is both physically and psychologically. My neurologist has diagnosed me with many things over the past five years such as migrains, myosfacial pain syndrome, chronic fatigue syndrome, fibromyaglia and the list goes on. Definately take both scorpio1960 and ticker's advice as they have been a great deal of help to me and extremely kind and honest individuals. I am in the process of seeing an LLMD and am looking forward to the appointment and getting a second oppinion from a credible source. My questions for you are do you live in an area or travel to an area known to have ticks and a high rate of lymes disease? And do you ever remember being bitten by a tick during your lifetime? Take care and know that you are not alone!

FMS@23?


momto4kids
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/19/2009 7:57 AM (GMT -7)   
Ticker I went through the list of symptoms.

This is what I experience daily, some of them less often:

Unexplained fevers,sweats,chills or flushing- I am always cold. When it's about 80 degrees then I might be comfy. I do wake up of a night sweating....but I keep a space heater on year round and most of the time am wearing a long sleeve shirt and a sweat shirt and jammie pants. Not sure if that could really be a symptom or not.
Fatigue, tiredness, poor stamnia- I can barely do my job, which is stay at home mom, and there are lots of things to get done. Today I have already vacuumed the kitchen floor( I know yuck carpet in there) and folded 2-3 loads of laundry..I now am so tired and the pains...I had to take one of my Tramadol's(50mg).
Sore throat- Not really sore, more like feels like I haven't had anything to drink for a couple of days...all the time.
Sexual dysfunction or loss of libido- I am so tired and hurt that I don't even like for my husband to hug me. I also don't like for my kids to touch me....I just hurt. I love them all, but its painful.
Upset stomach- I feel nauseas(sp) a lot. For no reason really. There was a time that it was happening so often I questioned if I was preggo or not.
Bowel function- just fine if I eat enough fiber.
Chest pains- I've had these for 2 yrs. and am always told that it's panic attacks. Which I believed to be true because that yr was crazy with both great and very sad things.
Cough- I am a smoker...who knows...
heart palpitations, pusle skips heart block- this one is kinda tricky to explain....I probably 3 times a week will feel like my heart is beating about 4 times instead of just normal...I hope that makes sense..I have told my Dr it's like a super fast flutter.
Joint pain-In every joint, elbows and knees not so much. It's there just not as painful.
stiffness of the joints or neck or back- yes kinda like I slept wrong or something.
Muscle pain or cramps- I get "charlie horses" in my legs a lot and stabbing shooting pains in my back.
Twitching of muscles- my fingers do sometimes.
Headaches-daily...that's normal right?
Neck creeks and cracks, neck stiffness neck pain- again like I slept wrong and well creeks and cracks just come with age right?
tingling and numbness- arms, hands and legs/hips.
Eyes/vision- I haven't been to an eye Dr for like 3 yrs. The glasses I am wearing are about 8 yrs old. Going for an exam on 4-2. Might be why I have headaches and blurred vision.
Ears/hearing- I can feel and hear my heartbeat in my ears. That is new(past month) and it's annoying
Increased vertigo/poor balance- If I get up or turn around too fast....I'm going down. Vision goes black and legs and arms burn...I pass out.
Lightheadedness and wooziness- Daily.
Tremor- more like shakes from being cold.
Confusion/difficulty in thinking- I am getting really bad.
Difficulty w/ concentration- Sticking with one thing is getting hard to do.
Forgetfulness- I will forget what I am doing. Forget where I am driving to.
Mood swings- I am starting to NOT like my self even. I feel bad for my family
Disturbed sleep- I have a very hard time getting to sleep, and then I wake up all the time. And I feel like I am sleeping but I can hear everything going on.

Well I think that's just about it. Sorry this is long. I had a few things I was gonna ask about but I have forgotten what it was. Maybe I'll think of them in a bit again.

momto4kids
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/19/2009 8:08 AM (GMT -7)   
I remembered one of the things...LOL sorry.

I don't recall the last time I was bit by a tick. Maybe 15 yrs ago. And 2 of the Dr's here have said at different times that Lyme Disease is very rare here. Is that because they are not testing right?

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 3/19/2009 9:23 AM (GMT -7)   
momto4kids said...
I remembered one of the things...LOL sorry.

I don't recall the last time I was bit by a tick. Maybe 15 yrs ago. And 2 of the Dr's here have said at different times that Lyme Disease is very rare here. Is that because they are not testing right?
Not sure where you live, but in all but three or four states doctors will tell you that Lyme is uncommon here. Lyme disease is a very misunderstood and controvercial disease. To answer your question, it's not that your doctor is giving you the wrong test, it's just that the tests themselves are not reliable. 


 
 


momto4kids
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/21/2009 8:00 PM (GMT -7)   
I live in Southern Indiana. I was looking at my paper from the Dr and the name of the test she had done is Borellis Bufgdorf antbdy. Is that a good reliable test?

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 3/22/2009 6:29 AM (GMT -7)   
Hi momto4kids,
 
I am sorry you are feeling so poorly, if you have lyme disease (sounds to me like you do in my opinion), it is treatable and you can be symptom free with the right treatment.
 
I honestly don't know about the test you mentioned, what I do know is the most accurate testing lab we have in the U.S. is IgeneX Labs in Palo Alto, CA as Ticker mentioned.   Their website is:
 
 
You can order a free kit from them but you will need a doctor's signature for them to test your blood. 
 
Also, ticks or other blood-sucking vectors have no boundaries as they are in every state and many countries, the U.K., Europe, South America, and the list goes on.   I always thought that ticks get too much credit.
 
A friend of mine became infected in Montana and all the doctors told her there was no such thing as lyme disease there.   But she had it and today she is completely better.   Remember that ticks are not the only transmitter of lyme bacteria, the host of all lyme bacteria is the white footed mouse and whatever blood sucking vector feeds on these mice get infected thus transmitting lyme to mosquitoes, fleas, black flies, mites, spiders, really most any bug.
 
In my opinion fibromyalgia is just a symptom of an underlying disease, there are no facts to back up Fibro as well as other "names" that doctors give because they don't understand lyme.
 
Many of your symptoms sound like the ones I suffered from and I was coinfected with Ehrlichiosis (there are many coinfections).   Ehrlichiosis is known to cause fatigue and joint pains as well as a non-productive cough. 
 
Your best bet right now is to first get tested by IgeneX Labs, then take it from there.  If you can not find a Lyme Literate Medical Doctor near you, then you have other options.  I was first treated by a LLMD with antibiotics which didn't work for me (not everyone responds to antibiotics like myself).   I used an alternative medicine protocol that I followed from a book that I bought on the internet. 
 
Ask questions and learn about this disease  Become your own advocate and trust your gut instincts.   I have been better for over 3 years after having lyme and ehrlichiosis for over 10 years and it took me about 8 months to get better and I know plenty of people who are better.  Lyme is not a life sentence and you will and can get your life back to where it was before you became sick.
 
Last but not least, a person could have the lyme bacteria in their body for years and when a stressful situation comes along their immune system weakens allowing the bacteria to flourish.  I believe a strong immune system as well as a healthy diet will kill the lyme bacteria by itself.
 
Hope this helps,
Denise

It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 3/22/2009 2:03 PM (GMT -7)   

Hi momto4kids.  Many doctors believe Lyme disease is rare in certain areas.  Lyme is now the fastest growing infectious disease in the US, and it is in every state.

I am sorry your symptoms are so severe.  I highly recommend getting evaluated for Lyme and the co-infections by a Lyme reputable lab.  Night sweats, heart palpitations, and being cold like you describe are hallmark symptoms of Babesiosis.

Many people are bitten by ticks without knowing it.  They are tiny, they inject a numbing agent so you cannot feel them on you, and they often go in hard-to-see places.

You can email me for doctor recommendations closest to you.


LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 3/23/2009 9:00 PM (GMT -7)   
Hi Momto4kids,
I'm so sorry to hear about your symptoms! I'm a mom of one 3 1/2 y.o. and that's difficult with Lyme.

You've got some awesome advice here. Get an LLMD and keep us updated on how your doing. Ask many questions and do lots of research.

There is light at the end of the tunnel!!!!

My prayers and heart are with you and your family,
Lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
1/29/09  Added: Rifampin 600mg- Ehrl, Lomatium 15dropsBID-parvo, andrographis 15dropsBID (super yuck!)-LD, Alinia-cryptosporidium.   


saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 670
   Posted 3/24/2009 5:31 AM (GMT -7)   
momto4kids

Try to find Lyme support group in your area.

saxmar

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 3/24/2009 9:24 AM (GMT -7)   
If a doc tells you lyme isnt common here run from him her Fast . They know nothing. And you will keep suffering. Also simple blood tests may also show you nothing. Get to a lyme doc. For proper testing.
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