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A while back I posted that I was finally getting a thorough workup by an infectious disease doc, believing they had the expertise to diagnose infectious diseases 😆 . I was tested for many things including brucellosis, erlichiosis, syphillis, TB, HIV/AIDS. The only tests used were the antibody tests despite the fact my blood work shows my body may not be producing enough antibodies to show up in a test. I had tested negative for Lyme several times via antibody tests so he saw no need to retest for Lyme despite the fact a CD57 test came back with a result of 34. He refused to run additional tests.
Not finding anything via the tests he chose to run, he consulted with the immunologist I had seen recently and my old rheumatologist who I have not seen for over 10 years. Despite the following test results indicating illness of some kind, they concluded that there was absolutely nothing wrong with me physically, that I was mentally ill, and that the bruises that formed along the areas affected by leaking capillaries and tenosynovitis were the result of self harm and that I needed psychiatric treatment. It is all so ludicrous that it doesn’t even upset me. I will be speaking with an attorney though.
Test results indicating illness:
– Steadily worsening Lymphopenia documented via lab tests August 2007 to the present
-Low percent gamma globulins documented via lab test February 2011
-NK cell deficiency documented via lab tests April 2011
-High sed rate (54) documented via lab tests as recently as August 2011
-GFR final February 2011 = 65.01 (GFR was 111.9 March 2009)
-ANA Positive, titer 1:320, speckled pattern documented via lab tests October 2008 and March 2009
-Protein in urine documented via lab tests March 2009
-Abnormal EKG (Nonspecific T wave abnormality) documented June 2010
-Profound bradycardia and symptomatic PVCs documented via Holter monitor and event recorder July 2010
Reaction to doxycycline followed by improvement in many symptoms, especially heart symptoms and hearing, August 2010.
Drenching sweats followed by chills DAY AND NIGHT since November 2008.
BG
@BG wrote:
Not finding anything via the tests he chose to run, he consulted with the immunologist I had seen recently and my old rheumatologist who I have not seen for over 10 years. Despite the following test results indicating illness of some kind, they concluded that there was absolutely nothing wrong with me physically, that I was mentally ill, and that the bruises that formed along the areas affected by leaking capillaries and tenosynovitis were the result of self harm and that I needed psychiatric treatment. It is all so ludicrous that it doesn’t even upset me. I will be speaking with an attorney though.
Hi Barb,
So, have I read this right? An Infectious Diseases doctor, a rheumatologist and an immunologist all provided you with a diagnosis of psychiatric illness? I’m just a fellow patient,but I’d always been led to believe that psychiatrists were the only trained specialists who can legitimately diagnose and treat mental illness. 😯
Barb, have you considered seeing an AP or LLMD rheumatologist for a second opinion? It would involve travel, but there are rheumies, infectious diseases physicians and psychiatrists on both coasts who could provide you with a complete rheumatological,infectious diseases and psychiatric work-up, offer diagnosis, as well as assess you for tickborne or other infectious diseases, if needed.
When in doubt, I’d personally seek out a second opinion.
Barb, don’t feel bad. I second Maz’s always right on advice. I also saw an infectious disease doctor in 2005, because after a minor sinus procedure, the test indicated I had gut fungus in my sinuses. (Leaky gut?) Anyway, the infectious disease doc didn’t examine me or anything, he just wanted to know if I had personal problems or excess stress. I couldn’t believe it, this was at a MAJOR hospital and medical group in San Diego, well recognized nationally. I will NEVER go to an infectious disease doctor again.
Lizz,
That’s exactly how my visits with two infectious disease docs went. The first one refused to test me despite a referral from my primary physician because of a reaction to doxycycline and kept asking me about stress instead. The second one agreed to test me because of a referral from my rheumatologist and the immunologist but kept asking about stress. His notes in my medical record say something about the need to humor me. Both said the reaction to doxycycline didn’t really happen. I will never go to another infectious disease doc either and now it’s unlikely I’ll be able to receive medical care at the local medical clinic because no one will believe I’m physically ill.
Barb
Hi Barb,
That’s a lot to deal with. Try not to be so hard on yourself. I do understand it is frustrating. Don’t waste your time if your illness(es) falls on deaf ears.
With documented labs & tests like you have, how did these drs. come up with a psychiatric diagnosis 😮 — and three of them (none of which is a psychiatrist)? Ditch all of them and start over with a new medical team.
Please don’t be hard on yourself and get third, fourth and fifth opinions if you need to. It can’t hurt — and might just help you piece this together so you can start down the path to better health. You will find a good (MD) match, but unfortunately, it can take some time.
I had an issue some yrs. ago and when I left the drs. office, I instructed his secretary to ‘not bill my insurance company for the wasted time visit.’ I checked and followed up. They didn’t. 🙂 Patients need to be their own advocate and not be pushed around in the system of medical care, or lack of it.
Please let us know how you are doing. I wish you well.
Eileen
Maz, Eileen and Jan,
I will see another doctor, in a different practice, when I can. As of the end of this month, I will no longer have health insurance. Because I’ve been too sick to work since May 3, 2008, I have no income and my savings and retirement funds have been exhausted. I have an SSDI Appeal hearing next Tuesday but, because of the report from the infectious disease doc, I will likely be denied again.
The good thing is that the antibiotics (doxycycline since July 26, 2010 and amoxicillin for 10 days in August) helped me immensely. Many symptoms have improved and some blood work has improved (the improvement is slight but it appears to have arrested a steady downhill slide that started May 3, 2008) so maybe everything will continue to improve.
Barb
I should explain how I got amoxicillin and what happened with it because I think you’ll find it interesting.
In July, I came down with a bug, got really sick with ear pain followed by an intense sore throat, high fever, high blood pressure, etc. Felt really ill. It was after hours so I had to go to emergency care. The nurse practitioner was concerned I might have strep throat despite a negative rapid test for strep so she prescribed 875 mgs amoxicillin two times a day for 10 days.
I had a sun induced rash on my legs and feet when I started the amoxicillin (fluid and blood filled rash from leaking capillaries) I had purposely exposed my legs to the sun to see if this problem had improved after many months of doxycycline. Because it developed as quickly as ever I knew that I was still very ill. Normally this rash takes many months to over a year to clear up once I have it. It cleared up in record time (about 17 days) with the amoxicillin. Completely cleared up, with no residual evidence which has never happened before either. When I realized this, I decided to test my legs again to see what would happen if I exposed them to the sun again. This time, absolutely no fluid and blood filled rash developed during sun exposure for the first time in at least 2 years. I have been able to wear shorts and sandals, exposing my legs and feet to the sun every day since then without developing even a hint of a rash. This rash first developed 10 years ago after a severe bout of hives but gradually improved and disappeared then came roaring back in 2008 or 2009. Until the amoxicillin, I couldn’t expose my feet and legs to the sun without getting the rash, edema, elevated pain, fever, etc. After the amoxicillin, all of those symptoms are gone. Amazing! Wonder what kind of infection that was — obviously something susceptible to amoxicillin.
Barb
Barb I feel for you very much. Sounds like my story. I also know what it is like to not have the funds to get the help you need.
What is it with some of these guys who seem to be intent on putting you down when you know yourself how dreadfully ill you are. The biggest stress of all is their casual attitude, and being treated as though you don’t have a brain. I know you will never give up. At least you found something that worked. The clindy often does too. It sure does help to know what your treating, but it costs money to find out. I wish you all the best in your recovery and source.
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