It has been 102 days since the pain first started, I have been in and out of the doctor's office having more test run and still nothing. In September my doctor sent me for an Upper GI and an FT hoping that something would show up but yet again it came up blank. She switched me over to Novo Ketorolac 10MG to help with the pain, I took it for over a month, at first it worked but after awhile it stopped. She then moved me over to Tramacet but it made me sick so I had to stop taking it. Then a couple of weeks ago she put me back on the Cipro again for a week to see if it would reduce any possible inflamation I may of had but it did nothing. Now more symptoms have started showing up, I still have the pain in my abdomen and in my back, and the pressure in my head has been there almost everyday for the past 2 months, the bruises on my abdomen have been coming and going and now I have been getting some on my legs and arms. I have now had joint pain in all of my joints for the past month as well, my joints feel stiff and some of them keep cracking and popping when I move, I have also had a slight fever off and on this enitre time and had developed a sore throat. I went back to my doctor on the 8th of October hoping she would be able to give me something for the pain to help get me through school. She took a swab of my throat because it was red and I had some swollen glands and sent me for some more blood tests to check for lyme's disease for a second time and some other things. Then on the 13th I got a phone call from her saying that I had Strep Throat, I had no clue where I got it from because I had only been out of the house twice in the past 2 weeks, so I had to start APO PEN VK 300MG to get rid of it. On the 15th I went back to the doctor's and she told me that the blood tests came back normal again, and she started me on APO DICLO SR 75MG to help with the joint pain which has been sort of working so far. She then said that she got me and appointment with a Rheumatologist for Feb. 1st, to hopefully help find an answer to my joint pain and maybe a reason for my other pain. I go and see a GYN on Oct. 30 and maybe she will be able to find something that everyone else has missed, and I go and see my Cardiologist on Nov. 10 to see if he can find anything.
In total I have seen 14 doctors, 21 nurses, 5 radiologist, had 5 or 6 ultrasounds, 6 urine test, 8 blood test, a pelvic exam, CT scan, 3 abdominal x-rays, and an Upper GI and an FT, and nothing. What test are left to do? I just wish that something would show up on one of the tests so that I could go back to my life I had before all of this started.
Loading recent content...
Post Comments
Add Your Comment!
Log in to leave a comment or Create an account
Have you had an MRI of your abdomen? (with dye)
Melissa.
No I have not had an MRI done, I have tried to talk my doctor into sending me in to have one but she thinks we should wait for now. I think that they should just give me a full body MRI because maybe the pain I am having is just a symptom caused by something somewhere else in my body.
My doctor said that it could possibly be an autoimmune disease but she is not too sure because my blood test keep coming back normal. She said that it could be lupus but it doesn't really look like it because not all of my symptoms fit.
I have chronic knee pain and friends have recomended Cobroxin. They say it's new and can only be ordered online at this point. I've read the web site info and placed and order yesterday. For $20 I thought it's worth a try. It's not going to heal you but may help with your joint pain.
i agree some kind of auto immune disease... go to a specialist friends Pam
You and your doctors are probably not aware that Lyme Disease tests are only 50% accurate especially in late illness. All the symptoms you describe could be caused by Lyme. Even the strep throat is often associated with Lyme.
Most Doctors follow IDSA 2006 discredited Guidelines that say Lyme is rare and easy to cure and that blood tests are reliable.
Currently these 2006 guidelines are under review and at a recent hearing presentations made by Dr Steven Phillips show evidence of Seronegativity and persistent infection. Details on IDSA website (Infectious Diseases Society of America)
Alternative Guidelines ILADS (International Lyme and Associated Diseases society) say that Lyme is not rare, that blood tests are not reliable and that some people need long term antibiotics.
I am in touch with several Lyme patients from Edmondton area and would suggest you contact http://www.canlyme.com/
With so much controversy over diagnosis and treatment you need to get well informed about this illness before approaching your doctor and don't be surprised if you are dismissed out of hand. Ideally you need to see a Lyme Literate Medical Doctor found through ILADS or Canlyme.
The smallest tick is the size of a poppy seed and you can not feel it because it injects an anaesthetic, so many people are not aware they have been bitten, about 40% do not get the tell tale bulls eye rash which is the hall mark of lyme and should be treated regardless of blood tests.
The more Doctors you have seen and the more symptoms you have and the more tests you have had that come back negative the more likely it is to be lyme.
Good luck in getting some treatment that helps you.
Hello
I too live in Alberta and like so many others who were finaly diagnosed as having Lyme Disease saw a gazillion doctors specilists here only to be told "There is no Lyme in Alberta" regardless of the fact that I KNOW I was infected in Europe and told this to each and every medical person I saw !!
Any way to cut a long story short
check out http://www.canlyme.com
I am sure you will find lots of information there about Lyme Disease and the inaccuracy of the testing done here and most everywhere around the world! There is a lab in the US ( http://igenex.com/Website/) certified by their CDC, who do Lyme testing costs a bit but at least that should confirm wether or not you have "joined" the ever growing number of people suffering from this disease.
I totally agree with everyone who suggested an autoimmune disease. I have Lupus, fibromyalgia, arthritis and assorted other things. I'm glad you are going to see a rheumatologist. But, as I read what you wrote, you said the rheumi was scheduled for February 1st? I really hope you're kidding. You need to be seen way sooner than that. If I had to wait that long, I'd be a real (bad word). My pain, luckily, is manageable by Excedrin. It does not take the pain away. It just lets me deal with it. When you see the rheumatologist, ask him about an ANA blood test. He probably will take it anyway. It will determine if he needs to perform more autoimmune tests if your titers are high. Please let me know how everything turns out. I feel so very sorry for you for how you're feeling. If your rheumatologist puts you on Plaquenil because he thinks maybe you have Lupus, it worked for me like a charm. I was diagnosed, June 1, 1999 and was in remission June 8 of 2000 and I was very sick with it at first. I attribute it to the Plaquenil. Best of luck to you.
Anne
Its too bad no one has mentioned Lyme disease..of course"we don't have Lyme in Canada" right?? Wrong!!
The sad thing about this is that they will "merry-go- round" you until you cannot function any longer or end up in a wheel chair.
I suggest you look up Can Lyme an other websites and get yourself informed.
Remember also that the Canadian "ELISA" and Western Blot" tests are close to pretty much useless.
You'll have better luck buying a 6/49 lotto ticket than being diagnosed positive with Lyme and even if you are "positive", they will say its a"false positive"... get the picture
Thats the scenario for ANYONE in Canada that gets Lyme, some provinces are worse than others.
I also suggest you think back to "any occasion" where you we outdoors and got a "spider bite"....
Good luck and remember, you have to be your own advocate,this is unknown territory for 99% of doctors and most won't touch it wiht a 20ft pole.
So in closing, consider it being lyme disease, bartonella or some type of serious bacterial infection, unless its stopped in its tracks by antibiotics, it will simply continue to proliferate.
Regards,Sitenatinen
Thanks everyone. Feb. 1st is the closest appointment that my faimily doctor could get me with the rheumatologist, it would have been a longer wait but she snuck me in throught the back. We phoned the rheumatologist to see if we could get the appointment moved up any closer but they said that they were completely booked and said that they would put me on a waiting list so that it and appointment was cancelled I could take it.
Just for the benefit of the person who commented with a Lupus diagnosis many peolpe have been diagnosed wrongly with Lupus and then found that it was Lyme and on correct treatment of antibiotics for what is actually a bacterial infection they get their health and lives back. See the trailer of Under Our Skin at www.underourskin.com Have a look through their blogs and other exerts from their DVD you will be astounded at what you see is going on.
<font face="Arial" size="2">www.canlyme.com</font>
<font face="Arial" size="2">www.canlyme.com</font>
Your symptoms are almost exactly like mine. I was vitamin D deficient. Get your vitamin D blood level tested. From your symptoms, I'd say you're about a 15 ng/ml in the deficiency range. See my profile for details on what to do if you are indeed deficient. It took 22 doctors, CT scans, colonoscopy, heart stress test, a multitude of ob/gyn exams, treatment for irritable bowel syndrome, vaginismus, interstitial cystitis, pain clinic classes and biofeedback for chronic pain and on and on and on till finally one of the doctors ran a vitamin D test. And now 99% of my symptoms are gone. Definitely do the vitamin D test, read my profile, and if you have any questions, please let me know.
Larissa
Don't GIVE UP! I went through something similar... I was never really sick or rarely went to see a doctor; besides to have my three children.
I had developed severe, dibilitating pain after a benign biopsy in my auxillary gland. At first I would get through the pain thinking it was part of the what happens after an excisional biopsy of the breast. Well my friend who's husband is a OBGYN told me I needed to go to the ER because their was something wrong and then my journey began...I was in and out of doctors offices and ER's when my pain was so dibilitating I was gasping for air, this went on for about 18 months and when I was to the Mayo Clinic in Rochester I was diagnosed with Reflex Sympathatic Dystropy;(I tested positive for it) which is a neurological disorder where my nerves didn't shut off after my surgery and continue to affect my right extremity and right breast.
Through this journey I went through MRI's, CT scan's, x-ray's, etc, etc and tried many medications... that didn't seem to work. I also was at 3 to 4 different medical facilities; like you. I went from physician to physician until a found a physician who believed in me and was willing to take the time to help me, but it took me a while to find her. I thank God I did!
Now that they have diagnose me with RSD I am able to understand it and learn how to manage it. I recently had a surgery in the same area which they believe to be a neuroma from my first surgery. Hoping it will lesson my pain.
So don't give up; be persistant and don't give up!! Find a good support team: Family, friends or a church group.
I will keep you in my prayers!
Hey...
From Calgary as well. Experiencing some of the same symptoms. It first started out as "flu like symptoms" that left me with pain in my stomach, muscle twitches & IBS symptoms for about 4 months. Had numerous ultra sounds, xrays & and a CT done. - Nothing.
Stomach is now better but it was like it moved to my joints/muscles & nerves. My bones keep cracking everywhere- (which didn't before). My joints are not right - I walk around the office or move a certain way and I can feel them "pop". The twitches have increased in my lower legs and arms.
I went to see a naturalpathic doctor last week. He thinks it might be Lyme disease.
<font size="2" color="#0000ff">http://www.calgarynaturopathic.com/#</font>I am in the process of trying to get tested but my Doctor has no clue what to do! What tests did you request?
Thanks,
Hi Katfish
The sooner you get tested for Lyme the sooner you can get treated and the sooner you start treatment the more likely you are to get better. It can be a very long process
the "usual tests" are notoriously poor.
Most people get a "test kit" sent up from The Igenex labs in California
http://igenex.com
Check this site
feel free to ask them questions, I have always found them super helpful, they can tell you what tests would be best and how to pay for everything.
When you get the kit have your doctor sign the requisition included. Best to return the filled specimine tubes to them on a Monday or Tuesday so there is no weekend delay and they will contact your doctor with the results
For moral support check out the Canadian Lyme Foundation ( in BC) www.canlyme.com
Thanks everyone. Im am going to wait and see about getting tested for lyme disease for now because I am going in for surgery on November 23rd where they are going to see if I have endometriosis, if they find nothing I will ask to be tested for lyme disease.
MY MOM IS HAVING THE SAME PROBLOMS TEST AFTER TEST AND NO ANSWERS I AM HOPING FOR SOMEONE TO HELP ME OUT ON THE MAJOR STOMACH PAINS THAT MY MOTHER IS HAVING KEEP US POSTED. OR ADD ME AS YOUR FRIEND THANKS DAWN
» Comments RSS