stop the tears
Posted by sixgoofykids (Member # 11141) on :
That was not an LLMD if they didn't believe in chronic Lyme. Please post in seeking doctors. If you had Lyme Disease and you are still having symptoms, then you still currently have Lyme Disease and need treatment.
Hang in there, it's one tough disease but you can get better.
Posted by Dekrator48 (Member # 18239) on :
aubsdaddy,
Sorry that you are having such a bad time.
Can you find a new LLMD for another opinion?
If you had lyme and only had 30 days of antibiotics, it is very possible that you were not cured.
Add fatigue and anxiety...and it sounds suspicious.
It does not sound like you were properly evaluated for coinfections like babesia, bartonella, ehrlichia, ect.
If it were me, I'd find a new LLMD on the Seeking a doctor board...or maybe you already have the list.
Maybe the Dr you saw wasn't really lyme literate if he didn't believe in chronic lyme.
Posted by aubsdaddy (Member # 21128) on :
But how do i get better! The supposed LLMD i saw
in west chester, pa did a dna pcr for lyme and
coinfections. was sent all over the coutry til
i finally got the test results back and they were
negative. i have all the symptoms. i don't
understand. can someone please answer this
question what exactly is chronic lyme disease...
does it mean u still have the infection or does
it mean you had the infection and you are still
suffering from the affects of the lyme or does it
mean u were never treated correctly to begin with
? i am really confused on this subject
Posted by sixgoofykids (Member # 11141) on :
It means you were not treated correctly and you still have Lyme Disease.
Posted by aubsdaddy (Member # 21128) on :
how come my basic quest lab test shows some
positive results on both igm and 2 on igg and
the dnr pcr test came back negative if i still
have it. i was on doxy when i took the dna test
tho. in '95 i was treated with amoxycilin for 30
days. how do u know if u were not treated
correctely. by your test results or by your
symptoms?
Posted by aubsdaddy (Member # 21128) on :
like how do u tell if u still have it? symptoms?
Posted by feelfit (Member # 12770) on :
PCR testing is a good test when it comes out positive, it is indisputable. However, and this is the important part, THEY RARELY COME OUT POSITIVE!
It is like finding the proverbial needle in a haystack, or more like the state of Texas.
Pay attention to your positive bands on your Western Blot...that you have them means an awful lot.
You were undertreated. Your disease is still active, thus 'chronic lyme'. Any LLMD who told you that it does not exist is not a true LLMD.
You treat by symptoms!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Get yourself to a good doctor and start appropriate treatment now. You've still got a lot of living ahead of you and you don't want to spend it in the state you are in right now.
Good Luck!
Posted by seibertneurolyme (Member # 6416) on :
You have to repeat the PCR test about 20 times to totally rule out an active infection based on that testing method. That should give you some idea how inacccurate that test is. And very few of us have the money even with insurance to rerun the same test that many times.
Chronic Lyme means that you still have an active infection.
Bea Seibert
Posted by seekhelp (Member # 15067) on :
Before BettyG swoops in with her famous post of the hour.
ORIGINAL POST
I was diagnosed with Lyme in 1995 and received oral antibiotics for 30 days... said i was cured.
I remember even tho i was only 15 at the time going to hospitals after being treated because of fatigue.
In 2002 i got another lyme disease test result and it came back positive but the infect disease told me that its like having chicken pox it never goes away.
in 2009 i got another test and lyme came back positive again. this time i seen an llmd in west chester and he said the same thing, said he didn't belive in chronic lyme and that i was crazy.
I am in so much pain its unbearable. 6mg of xanax a day doesn't even take away my axiety anymore.
i thought my symptoms subsided but i was going to hosptials left and right cause i am poor and do not have medical coverage and i was giving all types of opiates.
so really i was just hiding the symptoms. i thought i was going through opiate withdrawal but its been over 30 days or more.
I can't even move off the couch anymore. i am going to school and it is affecting my attendance at school and i can't even work to support my family.
my wife works so hard and I have a 3 years old daughter. The things i used to enjoy in life are completely gone! i think everything i could like is gone.
i don't even enjoy my family and i am very sensitive. i love my family but everything seems just dull and i have no umpf or energy. what is wrong with me? Someone please help.
I can't stop the tears.
Posted by Carol in PA (Member # 5338) on :
Pain Anxiety Fatigue Mood swings (crying)
Lyme causes conditions in the body that lead to these symptoms.
The testing is awful....so inaccurate. You may as well flip a coin.
Doctors are supposed to make the diagnosis based on the patient's symptoms and history. This is called a clinical diagnosis.
Most doctors will not make a clinical diagnosis of Lyme. They tell the patient that the test is negative, and it must be due to something else.
There are some things you can do to help yourself. Take magnesium. Take pharmaceutical quality fish oil.
Stop eating any transfats....these are incorporated into your cells and can result in poor quality cellular membranes.
Most Lyme people are deficient in magnesium, which is needed in all cellular enzyme processes. Your cells cannot make enough energy...hence the fatigue.
The fish oil supplies Omega 3's, which reduce inflammation and improve the quality of the cell membranes.
Taking things to reduce inflammation will reduce the pain, and improve bloodflow to the brain.
Good quality cell membranes allow more oxygen to pass from the blood in the capillaries to the body's cells. The cells need that oxygen to make energy.
I PMed you the PA LLMD list. Take a look at it and try to consult with different LLMD.
Posted by WildCondor (Member # 434) on :
You did not see a LLMD. That doc is not a lLMD, period. Be careful with referrals, there are only a handful of real LLMDs out there that are keeping up with treatment protocols and research. We can help you get to a real one.
Lyme testing is not accurate.
Lyme is a clinical diagnosis based on history of a tick bite and symptoms.
If your blood was negative that does not rule out Lyme or co-infections at all.
We are here to help guide you.
You have to educate yourself though.
Read up on all of this stuff.
............ LOL @ Seekhelp, poor Betty. I want to get you a magnifying glass! The spacing out makes me dizzy, oh well. Can you increase the font on your computer, make the text size LARGE? You can always highlight the text, hit CONTROL + C to copy, and then CONTROL + V to paste and pop the post into Notepad, wordpad or wherever and space it out all you want!! Posted by JamesNYC (Member # 15793) on :
Let's hope that fake LLMD that Ausdaddy saw isn't on OUR LLMD list.
Let us know if he is.
Posted by canefan17 (Member # 22149) on :
James,
I highly doubt it.
An LLMD that doesn't believe in Lyme Disease? LMAO
That's like a Government that doesn't believe in Checks and Balances.
......oh wait
Posted by bettyg (Member # 6147) on :
quote:Originally posted by WildCondor:
LOL @ Seekhelp,
poor Betty. I want to get you a magnifying glass! The spacing out makes me dizzy, oh well.
Can you increase the font on your computer, make the text size LARGE? You can always highlight the text, hit CONTROL + C to copy, and then CONTROL + V to paste and pop the post into Notepad, wordpad or wherever and space it out all you want!!
condor, seekhelp, and others, ****************************
i have never asked for ONE LINE typing and double space between each one; extremely hard on me to decipher too.
condor, your normal LONG paragraphs ... i just have to scroll on by all your posts. your short paragraphs above were very unusual for you!
yes, i have my view, size, LARGEST; i have my screen enlarged also to 150-200% too due to my low vision problems.
NO, i'm not copying/pasting, etc. i spend enough hours on here helping folks; not going to add MORE HOURS. end of subject Posted by WildCondor (Member # 434) on :
Your breaking me in gradually Betty...they're getting more spaced out. Was just poking fun with you. Posted by JamesNYC (Member # 15793) on :
Unfortunately, that LLMD IS on our list! Yuck.
Posted by randibear (Member # 11290) on :
you'll find 95 percent of "regular" doctors don't believe in lyme.
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