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kaylagib
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/18/2009 10:00 AM (GMT -7)   
I have been having strange symptoms for a while now. I was never able to find anything that linked them until I read the symptoms of lyme. I have a strange brain foggy feeling, sometimes I get dizzy, I have facial pressure(my ct scan was normal). I get tingling and numbness in my face neck and back occasionally arms. I am now starting to have trouble with my memory. I dont ever remember being bitten by a tick or anything. I feel awful and I have been to the doctor so many times and diagnosed with nothing or dumb things like depression. If I am depressed it is because I have no answers. I think I have had these symptoms for about three years, and they get worse, sometimes I have days where I feel great but lately it is almost unbearable. I am also tired sooooo often. Can someone please tell me if this sounds like lyme or no. I hate it soooo much.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 9/18/2009 2:00 PM (GMT -7)   
Hi Kalagib,
Welcome to the board! I'm really sorry you have been feeling so poorly, but since you had questions about Lyme - this is the place to be!

I'm sure you will find everyone here helpful, kind & understanding of what you are going through! Pretty much all of us here have had to live through the same things.

I copied & pasted this from the "Newbie" thread at the top of the forum page(it would help you a lot to look through that thread). ~

-------------------------------------------------------
Below is a Lyme symptom list. You can have any combination of symptoms. (courtesy of ticker)

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.
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/18/2009 3:08 PM (GMT -7)   
Hi kaylagib,

Welcome to the forum!

We can't really tell you if you have Lyme Disease or not but you do have some of the symptoms. Have you had a Lyme test done yet? Your best bet, would be to have your blood sent off to Igenex so that you could see if you actually had Lyme specific bands. It would also be a good idea to find a Lyme Literate Medical Doctor(LLMD) to make sure the test is read properly.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 9/18/2009 5:40 PM (GMT -7)   
Welcome! I am sorry you are going through this. I can definitely sympathize with the doctors telling you there is nothing wrong with you or that it is just stress, chronic fatigue, fibromyalgia, blah blah. Now, these are real diseases as well, but it is so frustrating to not KNOW. I decided to take my health into my own hands. I went to healthline.com and put in my symptoms (you can only put in one or two because more than that will narrow things down too much. I went with joint pain because that was my biggest complaint at the time) and then went through the list. I researched each one and wrote down the ones that I thought were possible. I went to different specialists, but I made the mistake of not going through my regular doctor (who is my NEW doctor by the way). She is just wonderful and tested for things that she thought it may be and for things that I thought it may be. She did send me to specialists when needed. It is better to go where they send you as long as your insurance covers it.
I would definitely get a lyme test. However, make sure they check your B vitamin levels as well. That can cause a lot of your symptoms. Mine were tested and this wasn't the case, but just to be sure.
Just dont let your doctors blow you off! You let them know that you are the boss of you and they are there for you. If your doctor doesn't like that then find someone else. They are just holding you back in your own health if they are on any kind of power trip.
Good luck to you. I really hope they can find out what is wrong with you and fix it right away!
God Bless

strongmom
Regular Member


Date Joined Aug 2009
Total Posts : 79
   Posted 9/18/2009 8:38 PM (GMT -7)   
A few more things to consider. Have you been checked for parasites? Also, I read there is a test which is more reliable than the Western Blot (which is used to test for Lyme though not very accurately.)

I've read the CD-57 is very realible in determining if someone has active Lyme disease. It's complicated to explain how the test works, and I'm not the right one to explain it either, LOL, but it's a blood test and you can Google it to find out more.

I actually printed up a piece from PubMed about the CD-57 which I will be taking to my own docs if the recent blood tests don't come back with any definite answers. Theres a good chance you could rule out Lyme if the CD-57 comes back normal. Then you could start looking for other infections.

Hey have you ever been to a Chiropractor to get your spine checked? Long ago I used to have those symptoms and found out my neck was out of alignment. Two weeks of adjustments and I was back to normal.

This time though, everything started after some unusual bites, still went to Chiro to see if any help, didn't help this time. Oh how I wish all I needed was a few adjustments this time, sigh.

But anyway, It's like putting a puzzle together, this piece fits here but not there, etc and hopefully eventually you try enough things to figure out what it isn't and eventually know what it is.

Soooo, about the CD-57, that will be my next post, LOL.

I truly hope you find some answers and start getting treatment and feeling better soon.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 9/19/2009 11:44 AM (GMT -7)   
Another important thing to consider - get printouts of ALL test results. This will help considerably once you get home & start trying to put all the pieces together & discuss them with others.
=)
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


kaylagib
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/19/2009 12:44 PM (GMT -7)   
I am not sure that I mentioned a few other things I was not sure were related. I have extreme confusion, I sometimes mispell things and am sometimes left without the words I am trying to get out. Driving has become sort of difficult for me as I feel like I am inside of a fish bowl or that I am going through the motions not exactly in my mind. I know this all sounds dumb but I have problems with my ear (only right one). I cry sometimes because this has been taking place for about three years and I am 22 years old with 3 small boys , so it scares me.

kaylagib
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/19/2009 12:47 PM (GMT -7)   
Also I was diagnosed with something to do with my rib cage, I have chronic soreness and the doc called it some sort of arthritis, he was going to prescribe a steroid for it but because I have juvenile diabetes that was a bad idea. He gave me an anti inflamitory instead. I know that no one can diagnose me but I have had some of these symptoms for a while but it seems for the last two to three weeks they have suddenly hit me HARD and new things have come on ( the memory problems, and extreme fatigue). I just dont know what to do at this point. I am located in VA and I have an appointment with my family doctor on monday hopefully since this will be my third appointment with him in three weeks he will consider taking me seriously.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 9/19/2009 1:34 PM (GMT -7)   
IMHO - if your regular doc won't check you for any TBI's, you need to find someone who will.

Not everyone who gets checked for them has them of course - but if Lyme can be caught early, it's much more 'treatable'.

I have switched docs so many times over my life that I get a lot of people saying I'm 'doctor shopping'. Well, I am!! I'm shopping for a doctor without a god complex & one that understands that I live in this body - not him/her!!!

If we shopped for a car like the way some go get a doc, we all would be driving lemons!!

I know - I'm asking a lot from a doc!!! But I DID find one just like it. And, what the heck!!! It only took me till the age of 45 when I finally found one!!
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


kaylagib
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/19/2009 7:15 PM (GMT -7)   
Thanks for all of the replies, I am hoping that if I do end up having this that three years is soon enough in catching it. Like I said earlier I never had bite specific symptoms. No rash or anything but enough is really enough.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 9/19/2009 7:29 PM (GMT -7)   
Hi kaylagib,

You sound similar to me! If this is Lyme disease, just plain old catching it is good. But the sooner you start looking for the underlying cause (Lyme or otherwise), the sooner you can get it fixed and get on with your life. It sounds like Lyme to me, but I am not a Dr. I would find someone willing to test you, and go from there.

Good luck!

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/20/2009 8:33 AM (GMT -7)   
Kayla,

As they say, we can't diagnose Lyme, but you have so many of the symptoms, it sounds like you need to pursue this. I don't know how it can be ruled out, but you may find some answers if you see an LLMD and/or get some good tests done.

Your post about the confusion is almost exactly what I experience. And I know it is scary! It is horrible!

I do not have the rib cage problem, but I know that many here have that symptom and it is listed as a lyme symptom.

All this does not mean you have Lyme, but I believe it means you need to include this possibility in your pursuit of a diagnosis. I am very sorry that you are experiencing so many symptoms and having Dr. difficulties. It is all so unfair! We are all pulling for you!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/20/2009 5:33 PM (GMT -7)   
Hi again Kaylagib,

Regarding the rib cage problem....did your doctor say it was Costochondritis? Most of us here have it and it is usually caused by an underlying illness, so you may want to try and get tested for Lyme Disease.

If you need information on a Lyme Literate Medical Doctor, please let me know.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


kaylagib
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/21/2009 3:05 AM (GMT -7)   
yes that is what he diagnosed me with, he gave me an anti inflammitory called meloxicam. He said that it is a common thing for people between that ages of 20 and 40. Some things have been going on a while but kind of got put on the back burner, I have had a child each year for the last three years, and there was always something dealing with pregnancy or dehydration lol that they could try to put it off on. I am sick of this really. Today was a good day though thank god. I didnt feel foggy or too tired, I am hoping I can get that again today. Its so strage.

kaylagib
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/21/2009 3:07 AM (GMT -7)   
Oh and I can say that I have at some point during this dreadful dilema, had at least 22 of the symptoms listed by traveler, sometimes not all at once, but when you list them like that it is kinda like wow.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4297
   Posted 9/21/2009 3:22 AM (GMT -7)   
Hi kaylagib,
 
Nice to meet you!  As other's said I recommend getting your blood tested at IgeneX since they are pretty accurate compared to other labs that are NOT accurate.
 
If you go to the IgeneX website you can order a free testing kit though you will need a doctor's signature to get your blood tested.   It's better to know what you are dealing with.
 
 
If you do have lyme, it is treatable, I have been better for almost 4 years now and I had chronic lyme for about 10 years. 
 
Hope you feel better,
Denise

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


kaylagib
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/21/2009 5:20 PM (GMT -7)   
Deejavu, you give me hope if it is lyme. I have been wondering if I will ever feel the same again, it's almost like I have forgotten my former self. It's crazy and my kids are so young I want to enjoy them, I still do my best, but some days are better than others. Again thank you!
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