Im pretty frustrated today, i've been dealing with being sick now for 6 months! I know this is nothing to some of you an I apologize for that, but this stupid health system we have is driving me batty.
In October I became very i'll after returning from traveling around the U.S. for work. It started as just general fatigue but has now spread to the list of symptoms below.
I thought all doctors were the same and wanted to help you. Wow did I figure out something new. Well I did what many of you did at first went to multiple doctors who ran the same CBC, metabolic panel blah blah blah. And said you just have anxiety.
Well, after trying multiple meds nothing got better and continued to get symptoms. To make a long story short finally I found a doctor who without even mentioning lyme to her. She said "you know lyme could do all these things to your brain and heart". I was kind of taken back she ordered a full lyme work up ELISA the other etc and a MRI.
Finally, a doctor who cared! Also, I know those aren't the preferred test but common finally a doctor who didnt say "no fever, no rash, no elevated wbc no lyme"
Soooo.... I go to get my blood work done thinking maybe a doctor who will be able to know whats going on.
And what happens? After waiting all these months! The lab doesn't take enough tubes of blood from me! The phlebotanist didnt do all the test! So now I have to go back in on Monday get poked again cause someone didn't do their job.
Ugh its just frustrating dealing with this. Im 22 before this I was perfectly healthy. What is with these doctors? Your job is to help people so dont give up if one test doesnt come out right.
Well, sorry had to get that out I was getting ready to begin getting better in a couple weeks but now because someone didnt do their job I have to suffer longer.
Here is my list of symptoms, remember in October I was only dealing with fatigue.
HEAD hair loss headache seizure like things weird deja vu etc facial pressure twitching tingling nose stiff painful neck jaw pain
So do you think it could be lyme? I mean it cant right no fever, no rash, no lyme right (jk). Oh well I wish you all a fast and healthy recovery. Sorry you had to listen to me complain.
Posts: 286 | From St. Louis | Registered: Dec 2009
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It very much could be Lyme and other pathogens (called co-infections such as Babesia, Ehrlichia, Bartonella, etc).
The next best step to take, if you have not already, is to go under the Seeking a Doctor section and look for a Lyme Literate doctor (LLMD) near you to test for Lyme and co-infections.
Your are on the right track and on your way to getting help. Don't give up. Lyme and co-infections can cause many of the symptoms you describe.
My only problem with finding a LLMD is that I live in New York now, but mid May I will be moving back to St. louis. So just about the time I get in to see one here is about the time I will have to move back home.
I think I may still try to make an appointment with one, but am also going to schedule one back home. Just upset really I mean I'm a kid out of college.
I was smart and racked up only a small amount of loans in college and busted my *** to get through with only a small amount of money owed.
Now these stupid medical bills have almost reached the amount of my college. Just ridiculous when you realize it could have all been figured out with a simple test or a $25 bottle of pills from the start.
i know there are people who have suffered much longer than I have and once again I hope you all have a quick recovery! Just very annoyed today hopefully these test will show something.
Posts: 286 | From St. Louis | Registered: Dec 2009
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You have a genuine complaint so no need to apologize. I have gotten the "anxiety" diagnoses several times. Usually, once the dr. says anxiety that's the end of the story and there is no need for further testing. At least that was my experience. I thought these md's took a Hippocratic oath. Anyhow, a year ago I was a healthy 29 yr old and since then, my symptoms have manifested to make me feel 90. You have many symptoms that are indicative of Lyme.
Posts: 45 | From AL | Registered: Feb 2010
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It was mentioned in your previous post that your doctor was going to do an ELISA test. Please know that this test gives a lot of false negatives.
It you were able to find an LLMD in NY to at least test for Lyme and the other bacteria /pathogens, that way when you move in May you can have the results in hand to see an LLMD in Missouri. This can speed up treatment and recovery.
Just concerned about the seriousness of your symptoms.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I don't believe Igenex is allowed in NY. Why I do not understand.
But that is who I would test with. It may be in your best interest to go ahead and get an appt. as
most have a long wait list, but you can ask for cancellation drop in.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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I think some of them took the Hypocritic oath instead.
I have been sick for 9 months already. I pulled the tick off, watched for Lyme, then diagnosed myself when my doctor scoffed at me.
I started treatment 10 weeks after the bite, and got to an LLMD as soon as I could. He confirmed my amateur diagnosis and put me on better treatment.
I never went the rounds of useless specialists like many people have. I did that before with two other health problems, so I thought I would skip it this time.
My symptoms are not as bad as yours, or most people on here. But I've been on drugs for 7 months now, and I can't tell much if any improvement from what it's been like since the beginning.
I definitely share your frustration that it is taking so long to get better. And I know that the longer I have it, the more likely my symptoms could get worse in the future.
I know 9 months is nothing compared to those on here who have been sick for decades, but when you start out believing you have a mild, short-term illness that will be easily cured, and that you caught it early and got rapid treatment, it takes a while for it to sink in that you will be fighting it for a long time. And even longer to learn to accept that.
Meanwhile, I count myself tremendously lucky to be highly functional, still working, and to have supportive family and friends and a good LLMD.
I know I will eventually be okay. I just wish it would hurry up.
There is a good LLMD in Missouri--post in the "Seeking a Doctor" folder for recommendations.
Don't waste your time with a doctor who is not an LLMD, as far as finding one who can tell you for sure if you do or don't have Lyme, and can treat you for it if that's what it is.
Your symptoms sound like Lyme symptoms. An LLMD can diagnose you clinically, according to your symptoms. The blood test can show that you have it, but a negative test cannot rule it out.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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