Are my symptoms lyme disease?

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Carly18
Regular Member


Date Joined Apr 2009
Total Posts : 125
   Posted 5/28/2009 10:53 AM (GMT -6)   
Please help me. I am not getting any answers from any doctor. My symptoms started in September 2008 with a taste in that comes into my mouth. The taste sometimes changes, it started as a distinct mint taste now it will change to sometimes a burning sensation and sometimes just a tingling feeling inside my mouth. After a few weeks my throat felt like I had strep......was tested came back neg. Burning started in my neck and went to my throat and across into my shoulders and arms. Doctors thought it was acid reflux, the med's made my stomach and chest burn.  The burning continues and my skin will turn red in those places. My arms seem to burn more in cold weather and when I have clothing against the skin. I have been tested for just about everything and all comes back normal. I have had two endoscopes, two visits to ENT with scopings, mri of my stomach and heart, chest x-ray, ct of head because of vertigo. I have had two tests for lymes they came back negative so my doctor said I don't have lymes. I have gone to several specialist for gastric, heart, ENT, nerurologist and gland specialist...no one can find anything wrong but the burning and irritated throat and the taste in my mouth continue. I also have a redness to my cheeks and forehead that stays pretty much all the time. It is effecting my nerves..most days I push myself to do the simplest things. I do work full time, during the winter all I did was work, go home and lay on the couch and hope no one came over or called. Thanks for any and all information.

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/28/2009 11:18 AM (GMT -6)   
Have you looked into lupus. Although lymes is hard to rule out w a test reg docs dont understand that because lye tests look for lyme antibodies for a pos result and lyme reduces your immune system so chronic lyme patients dont have alot of lyme antibodies so for that reason lyme antibodies cant be found. Lyme lowers your whats called CD-57 immune systems killer cells. So a cd-57 levels test cant tell you if it is lyme although that is not entirely accurate also but it is almost. so also lyme is a spirochete type bacteria so it can go anywhere and produce almost any symptom so you cant say that these arent lyme symptoms although they dont seem typical. So keep pressing on and understand if you want to rule out lyme you have to go to a lyme doc. Some reg docs dont believe in chronic lyme. it is a scary fact that needs to change while people wait and suffer for that change and are being misdiagnosed. -V
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/28/2009 11:36 AM (GMT -6)   
Carly18, I'm so sorry you are going through so much and can't seem to get an answer or help. Not everyone experiences the same set of symptoms. Lyme and coinfections definitely can affect the central nervous system so yes it can be Lyme Disease. Also, Lyme is made by a clinical diagnosis and not necessarily through blood tests. Blood tests can back-up a diagnosis but definitely do not preclude those who test negative. When I first started on oral antibiotics and herxed I experienced many of the symptoms you're describing. If the doctors can't figure out what's wrong it might be worth it to see a llmd. You can get a referral in your area through www.turnthecorner.org or you might want to possibly try one of the alternative protocols mentioned on the forum (Zhang or Cowden). Good luck and let us know what happens.

Carly18
Regular Member


Date Joined Apr 2009
Total Posts : 125
   Posted 5/28/2009 1:18 PM (GMT -6)   
Thanks for all the input I really appreciate all your time. I have been tested for lupus, that came back neg. Lymekiller, what do you mean by floaters? I occasionally have spots but not all the time that I notice. Is this something that is really bothersome if you have lymes? I ended up in the ER with vertigo in February. They did a CT of my brain and said everything was okay.I get a sensation in my mouth that is a sting like if have ever tasted orange juice that has gone bad.......that's the best way to discribe it. I don't have much energy, I have to push myself to get things done. I do things instead of thinking about it. In the middle of stuff I usually have to take a break.......I never used to have to do that.

gorbybelle
Regular Member


Date Joined May 2009
Total Posts : 147
   Posted 5/28/2009 2:31 PM (GMT -6)   
have you researched 'burning mouth syndrome' ? - just a thought.

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 5/28/2009 3:44 PM (GMT -6)   
Carley18,
Has your doc checked your B-12 level? Look up symptoms of B-12 deficiency.
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/28/2009 4:09 PM (GMT -6)   
Some Lyme doctors do except insurance. Mine did. The only thing I paid out of pocket was for the Western Blot test with Igenex. It was $200.00, plus my $20.00 copay.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 5/28/2009 6:22 PM (GMT -6)   
i don't have any answers for you carly. just wanted to say that i understand your frustration. i've been dealing with specialists always finding their specialty. now with ms and lymes, even the specialists have no answers for me. hang in there.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/29/2009 12:29 AM (GMT -6)   
Carly, from everything I have read so far, ANY undiagnosable (is that a word?) illness should be tested for Lyme. That's how weird, sneaky and copycat Lyme can be. And as everyone says, many people w/ Lyme test negative. Have you looked at the test results yourself? Many labs' guidelines are too tight, missing a lot of ill people.

I'm not saying you probably have Lyme, of course, we don't know. But sounds like it should be at least considered. As they've said, everyone reacts differently, AND everyone describes the way that they feel differently -- maybe some use words you don't relate to and vice versa.

Obviously something is going on, and you and your Dr must get down to the bottom of it!

Take care and keep on truckin.....

Kiss My Lyme
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/28/2009 3:32 PM (GMT -6)   
I tested negative 5 times for lyme. No. 6 was a clinical diagnosis.I've had more strange nonesensical symptoms than I can count (can I still count?)Nothing surprises me anymore.Just keep researching.You need to become your own advocate. Keep the Light on.Peace Out...

dilligad
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/28/2009 3:43 PM (GMT -6)   
I am new to this having just found this link....however, I am convinced that I have Lyme disease. Got the bull's eye rash in 2001....after two biopsies, demotologist diagnosed it as some kind of feline fungal infection.....since then I have experienced a menagerie of medical problems....loss of smell, joint aches & pains, chest pains, chronic cough/bronchial infections, chronic fatigue, memory loss, vertigo and the list goes on and on! Tested twice for Lyme....only one was with the recommended Western Blot & Eliza....both were negative...yet not one doc, specialist or otherwise, has come up with a reason for any of my symptoms......!

HELP!

Carly18
Regular Member


Date Joined Apr 2009
Total Posts : 125
   Posted 8/31/2009 7:51 AM (GMT -6)   
I seriously wonder about some doctors and their diagnosis. I have not to date recieved any answers to where all my symptoms are coming from and I saw a lot of doctors that are experts in their fields. I still have most of the problems but they are getting better by me going to a homeopathic doctor. My insurance doesn't pay for me going this route which I think is crazy because I could still be spending thousands of dollars on tests that would still be showing nothing and getting nowhere where now I am actually getting results. The cure is slow but I continue to feel better all the time. The homeopathic doctor I go to said that it doesn't matter what I have wrong with me going this route will cure it. Through all the tests that I have had and everything coming up negative is why I feel this was the only way for me to go. I asked her about curing lyme and she said yes it would. I was referred to her by a medical doctor who also goes to her and was cured for migrain headaches. I feel she came highly recommended and if you can get cured of any illness and be natural about I think that's the way to go.
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