HealingWell
Search Close Search
☰

not sure about lyme's disease

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/12/2011 10:54 PM (GMT 0)
For the last ten years (i'm 21 years old now) i have had severe stomach issues, diagnosed as IBS. I have been searching in vain forever for relief and none of the usual IBS treatments seem to do a thing. I have also suffered from severe depression, anxiety, and an on again off again flu like feeling. I can't remember the last time i wasnt exhausted (its been years) and i have zero memory and feel like im in a constant fog. It just hit me recently that i may have lymes disease and i hope anyone here can help. What tipped me off was a sudden swelling in my knuckles (just a month ago my rings fit loose, now my knuckles are huge and i cant barely fit my rings on) they are extremely painful and feel stiff always. almost every morning i wake up feeling tired, stiff, and in pain, as though i was running all night instead of sleeping. i researched this and everything came up about lyme's disease, and reading all the other symptoms it all seems to fit. i live in an area where they are many deer, so i assume its a possibility. i'm worried all my symptoms may be undiagnosed lyme's disease. my problem though, is that whenever i tell a doctor how i feel, they assume i'm just imagining all my symptoms due to depression. do these symptoms really seem like they could be lymes? in other words how likely is it that i do have lymes disease, so i know whether pursue this and try to convince my doctors to test?

i'm only 21 years old and i feel miserable and in pain everyday! i should be healthy and able to enjoy life. any suggestions are greatly appreciated
Posted 4/12/2011 11:33 PM (GMT 0)
Hi AutumnGypsy and welcome!

Really sorry that you are having all these problems.  I also researched my symptoms when doctor's could not diagnose me and everything came up Lyme, sure enough, I finally found a doctor (after seeing many doctors) who sent my blood to IgeneX and sure enough, I tested positive.

You may want to first order a free test kit at:

www.igeneX.com

Then find a doctor who will sign the forms for the test.  Any lab can draw the blood by the way.  Just keep searching for a doctor who will sign for the test.  Please don't use labcorp or quest because they use rat's blood instead of human blood.

I hope this helps,

Denise

Posted 4/13/2011 4:51 AM (GMT 0)
Yeah... could be Lyme. The key is that you're having both mental and physical symptoms.

Doctors love to just fix one problem at a time... but if you take a step back and look at a persons health... alot of times there is 1 underlying cause to ALL their symptoms. I am also in my 20s and my first cry for help was ignored by a Doctor on Cape Cod who said "the 20s are typically a healthy time in peoples lives... you're probably just depressed". But I knew there was something else wrong.

If you feel somethings wrong... you're probably right. Don't let anyone tell you otherwise.

-MysteryLyme
Posted 4/13/2011 11:28 AM (GMT 0)
Hi AutumnGypsy,

Lyme and it's possible coinfections present in so many different ways and can be very individual for each person. Therefore, many doctors think a person has some other problem and not Lyme-- as Mystery said.  

IMO-- I wouldn't wast time on GP's or PCP's-- or even infectious disease doctors. I would seek out an LLMD: Lyme Literate Medical Doctor in your area and go straight to them. 

I wasted a lot of precious time flailing around with doctors (with good intentions) BUT they did not think I had Lyme because my tests were always negative.  Some even thought my symptoms were atypical!   And I had about 15 of them!

They each did treat me with the obligatory 1 month of low dose Docycycline but it was not enough. My symptoms only got worse in the end.

It wasn't until I began working (as a patient) with an LLMD that I truly got proper treament and am finally seeing great and long lasting improvement.   

Negative testing does not mean you do not have Lyme.  But of course it is also possible that you don't....but trust your instincts...and an LLMD will take your symptoms into consideration and not just a blood test result should yours be negative.

Good advice from Deejavu on igeneX.   But some people are lucky enough to test postive with the standard ELISA and Western Blot tests.  Stonybrook in Long Island, NY is supposed to be a good place for blood to be sent for these tests if you need for your insurance to cover it.  I don't think igeneX takes insurance.  Maybe they do now...not sure.

 I never tested with them because my LLMD believes in my symptom history and is treating me accordingly. 

I would not waste time with this disease should you believe you have it.  The sooner you get treatment, the better.

Hope you quickly get to the bottom of your problems-- as to what's causing them.  So sorry to hear you are suffering like this!  

 

Posted 4/13/2011 6:32 PM (GMT 0)
thank you so much for the replies! i think i will take everyone's advice and go straight to the lyme doctor and see if they can help me.

deejavu- thank you for the link for the test kit! i will certainly try that. its so difficult because something i think WE know whats wrong with us better than the doctor, but they dont like that idea. anytime i have asked a doctor if it could be this or that, they automatically tell me now it can't be! then yell at me for looking up symptoms on the internet and trying to self diagnose. i have seen way to many stories about people who felt ill, and suffered for years because their doctors didn't believe and help them.

mysterylyme- yes unfortunately doctors seem to be so skeptical when we ask for help and tell them something just isn't right. i always assumed it was "just depression" too, but i always wondered why because i have severe anxiety,depression and mood swings that developed without a real direct cause. sure i have had some past events that would cause depression, but there are times i feel like im going completely insane and feel mentally unhinged for no reason at all. its also become scary how difficult it is to process things and recall anything from memory. but again they told me that was just the depression! i think i will trust my instincts like you say!

cat111- i will look for a lyme doctor right away. one of my fears is that i will get a negative test, and my doctor will say "oh well your fine then". even if its not lyme, i need a doctor who will be able to figure out possible other issues that could be causing my symptoms at least, instead of just throwing in the towel. sadly my hands are awful and i hope i can quickly get relief before any more damage is done.

thank you all for the advice and support! i can't describe how much this has helped, i feel a lot more hopeful about this. i'm sorry all of you are suffering from this and hope you are getting relief with your doctors and medication. if this is what is wrong with me, its both overwhelming and a relief. it seems all my mystery problems can be solved all at once, but i also wish i tried to get help with this sooner.

wish me luck!
Posted 4/13/2011 9:40 PM (GMT 0)
one of my fears is that i will get a negative test, and my doctor will say "oh well your fine then". even if its not lyme,

I totally understand your fear of the above.  But a good LLMD will not throw in the towel just because you test negative-- if you do. 

Your symptoms are the real test (IMO and according to my LLMD....and others on this board)....and once you are put on antibiotics and have a herx reaction and then start to feel better with certain symptoms going away quite quickly (fingers crossed on that) THAT is the really true test that Lyme has been the culprit.  

A non herx and then a non reaction (feeling better) to antibiotics could very well mean that it isn't Lyme.  

I already mentioned this, but I have NEVER tested positive for Lyme yet....and I KNOW I have this disease as does my doc. My own herx reactions and positive response to antibiotics has proved that.  

BEST OF LUCK TO YOU !!!  wink   

 

Posted 4/16/2011 2:20 AM (GMT 0)
Yes I wasted many years of gp doc telling me I had many different health issues Save yourself a lot of grief and get to a good Lyme doc and see if you get a herx reaction from antibiotics that a good indication that you might have Lyme. Good Luck
Posted 4/16/2011 7:18 AM (GMT 0)
get the book Insights into lyme disease. 13 different doctors approach
Posted 4/20/2011 2:29 AM (GMT 0)
thank you all! i hope i can get on antibiotics soon. unfortunately we are switching insurance which means switching possible doctors, all that fun stuff. i hope i can be on antibiotics soon so i can see how i feel. about two years ago i had my wisdom teeth removed, and i felt unbelievably fantastic. i thought it was either A) the painkillers making me feel de-stressed and happy or B) the prednesone reducing inflammation (i thought that it meant i had colitis, not IBS) unfortunately my mother took control of dispensing my meds (i was home on winter break and high as a kite anyways on meds) but she never told me i was on antibiotics until recently when i asked. i feel upset because if she had told i could have avoided two years or worsening symptoms (if i do have lymes). it also could explain why i felt amazing for once in my life, and why the prednesone my doc gave me not only failed to make me feel better, but may have just made my symptoms worse (after a full week of prednesone is when i first had another mysterious flu like bout and my arthritis symptoms started) i also wrongly assumed i was tested for lyme when i had blood tests years ago, my fault for assuming :(

anyways the more and more i look at lyme the more and more it fits. im frustrated though that i could have gone down this road sooner had my mom not withheld info from me (we had lots and LOTS of talk on what exactly it was that made my stomach feel better after the surgery and she always just ASSUMED the antibiotics weren't worth mentioning) i don't even know if they were the right antibiotics or what kinds they were, but it just confirms this more in my head it may be lyme.

does anyone here experience arthritis? if i do get treated with antibiotics, will the arthritis reverse it self or will i have swollen joints in my hands and toes forever? i'll be crushed if i can never wear my precious rings again :(
Posted 4/20/2011 3:34 AM (GMT 0)
does anyone here experience arthritis? if i do get treated with antibiotics, will the arthritis reverse it self or will i have swollen joints in my hands and toes forever?

 

I never had arthritis swelling but did have severe elbow pain in both elbows-- for a year. This was one of my first symptoms. The pain moved around to different tendons and attachments and was also in the joint-- sometimes the pain would disappear for a day or so but always returned. 

I thought at first (pre Lyme diagnosis) that the pain was actual arthritis and that I would have it forever (age catching up with me).....but after 6 months (and counting) on antibiotics the pain is 90% gone.  I do get a bit of a flare very occasionally but for the most part I have to say that my elbows feel pretty normal and healthy.  Finally!

In my case I truly believe the antibiotics have reversed my elbow issues caused by Lyme.  I hope that will be true for you too! 

 

 

Posted 4/21/2011 3:34 AM (GMT 0)
thank you cat111 and lymester, that gives me a lot of hope to know my symptoms might reverse themselves after proper treatment. sadly my toes are suffering right now! they are completely purple (and its very warm outside now now i know thats not poor circulation) and i'm loosing feeling in them :( my little toes on both feet are completely numb now, but i will be at the doctor tomorrow or saturday (finally!) i will update what happens after i actually talk to my doctor and see if i can start on some meds. i know i probably shouldn't blame my mom! yes its true that a lot of doctors miss that, i guess i feel upset because had she told me i would have done some research and maybe come to the possibility of lyme disease about two years ago.

i will try to list my other symptoms as well. i'm not sure if some are related to lyme's disease or not but as of now i have:

arthritis like symptoms (swelling of joints and severe pain)
purple/blue toes
tingly sensation and numbness in toes and fingers
IBS/ gastrointestinal problems
severe anxiety
depression
a strange chronic red rash on my face (on my cheeks and nose, it comes and goes but is neither rosacea or a lupus butterfly rash) i'm not sure if this one is related but it came up out of nowhere about 2 years ago
memory and concentration problems
"brain fog" as many people call it
stiff joints and muscles which are at their worst when i wake up
night sweats
insomnia
sudden outburts of anger
hair falling out (from even my eyebrows eek!)
never ending fatigue
"ice pick" headaches
fainting

i can't think of anymore at the moment, i'm so used to ignoring my strange random health issues!
thank you all so much for the support! i will let you know what happens after the doctor visit
✚ New Topic ✚ Reply