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Old 12-27-2008, 01:00 PM   #1
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High Protein Levels, Low Anion Gap, High Immunoglobulin

Sorry this is so long if you see the big picture maybe you can help me. I hope so.

I have seen four doctors in the past several years went through a variety of tests such as Lumbar Puncture (Spinal Tap), muscle biopsy, EEG, EMG, MRI's of brain and back, CT Scans of back and lungs, Hydascan, PET Scans, Echo Doppler, Broncoscopy, needle biopsy, and many different blood tests. I have muscle inflammation in every muscle on my back. I can't sleep most nights because of the pain. I have no reflex on my left side. I have difficulty getting up out of a chair and worse if I am on the floor. Finding it very difficult to continue working a full time job.

This is what they have found out so far.

High Elevated CSF Protein levels
Elevated CSF % Seg
Elevated CSF % Lymph
Low Angio Convert Enz levels
Low Anion Gap levels
Low IgG/Alb Index levels
Elevated Sed Rate levels
Low Immunoglobulin levels
Elevated Sed Rate
Elevated CK

Hydascan showed fatty liver but I do not drink alcohol at all and do not eat a high fat diet. My cholesterol level is within normal ranges.

Echo doppler showed two leaky valves

Lung CT Scan showed two nodules
Broncoscopy did not show anything except Chronic Bronchitis and the two nodules, they could not reach nodules for tissue sample
PET Scan was negative both times.
CT Scan showed cyst in Kidney

Leg muscle biopsy showed Myositis

Shoulder tissue/muscle biopsy showed the following Pathologic diagnosis:

Degenerated fibrocartilaginous and adipose tissue with fragments of synovial tissue showing vascular proliferations and early fibrosis. Degnerated striated muscle fibers. Focal mesothelial cell hyperplasia of the synovium and scattered microcalcification.

My Neurologists at first thought I had MS but now said I do not have it. He said he does not have a diagnosis except that yes there is something wrong. He said he would tell me straight out if he thought there was nothing wrong with me.

He is recommending that I go to Mayo Clinic for evaluation. After all these tests I am not sure they will have a answer for me.

I am lost not sure what to do anymore. I know I am exhausted from all the testing and very little sleep.

Has anyone gone to Mayo Clinic if so were they able to give them a diagnosis?

Last edited by bestoldies04; 01-01-2009 at 08:44 PM.

 
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Old 12-30-2008, 01:09 AM   #2
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Re: High Protein Levels, Low Anion Gap, High Immunoglobulin

Hi I saw your post because I did a search for Pet scan. I wanted to comment to try to give you a different direction because you have done a lot of testing, with know real answers. Have you ever been tested for Lyme disease? If so and it was negative, you should know that the chances of finding Lyme bacteria in the blood stream are remote at best after the disease has disemenated in your body. I say this because I had a high protein in my CSF fluid. Doctors ruled out MS. I also have low Immunglobulin levels mainly the M levels. Did they order an IgG blood subsets? The immunglobulins are T-killer white blood cells that fight bacteria. Lyme disease suppress the immune system tricking the immune system from seeing it's there by actually penetrating and hiding out inside the white blood cells. It also can change it's shape and become dormant when it sees a hostile enviroment like antibiotic treatment. I have been in antibiotic treatment for the past year. My Immunglobulin was at 17 now it's at 33 so my immune system is recovering. It takes a long time. If you can I would find an LLMD (Lyme literate medical doctor) who can properly evaulate you and you may start treatment. There are also co-infections that come with Lyme disease.

Are you having anymore symptoms ie. brain fog, cognitive problems,ringing ears, ect. Do a search on Lyme symptoms, there are over 70 different ones and not everyone has the same.
Any questions please ask.

KA

Last edited by KSA84; 12-30-2008 at 01:10 AM.

 
Old 12-30-2008, 12:35 PM   #3
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Re: High Protein Levels, Low Anion Gap, High Immunoglobulin

Hi, thanks for answering.

Yes the Neurologist ordered IgG blood subsets and it was low. I thought he also tested for Lyme disease when the Lumbar Puncture was done. The doctor commented that the Neurologist covered everything that could be tested with the Spinal fluid. I am going to ask my primary doctor if he can order these blood tests Serum Protein Electrophoresis to check for M Proteins, also blood cell counts, calcium levels and maybe Beta 2 - microglobulin.

If the primary doctor orders these blood tests and they are negative I am finished with all testing and doctors.

you mentioned you were doing a search on PET scans, do you need to have a PET scan or know someone that does?

 
Old 12-30-2008, 09:36 PM   #4
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Re: High Protein Levels, Low Anion Gap, High Immunoglobulin

I'm having a Pet Scan because another doctor I am seeing doesn't believe in chronic Lyme disease. He just wants to check me out for Lymphoma. A couple of things to know. Lyme disease shows up in less the 5% of spinal taps. Also the fluid has to be sent out to a specific Lyme lab like IgeneX in California. And lyme is on the rise many doctors aren't even trained to look for it. It is a devestating illness. The reason I answered your post is because of the low immunglobulins you have. I would say that your immune system is suppressed and Lyme does that. The standard blood test for Lyme is not accurate. If you have been sick for awhile with Lyme most of the time the bacteria is out of the blood stream and penetrated deep into bone, organs, the brain, ect. If I were you I would have your blood sent out to a specific lyme lab like the one I mentioned. Look there website up it may help you because your not getting the answer. What state do you live in? Also, Lyme causes so much pain. It is an imflamatory disease. When the lyme bacteria is killed off by the t-cells it causes a inflamatory process like Fibro. Your in pain for a reason. Please don't discount Lyme. I didn't believe in it either because I never had a bulls eye rash that you get with a bite. A lyme tick is smaller then the period on this sentence. Would you even know that you have been bitten without a rash? I didn't and went 1 1/2 years without diagnosis or treatment. It is well into my system. Do you have pain in your neck middle back area? Does your neck make cracking/ crunchy noises when you turn it?

PS Did the pet scan make you nervous at all?

KA

Last edited by KSA84; 12-30-2008 at 09:42 PM.

 
Old 12-31-2008, 07:08 AM   #5
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Re: High Protein Levels, Low Anion Gap, High Immunoglobulin

You definitely have my attention on Lyme disease I will see my primary doctor and see what he has to say. He is very well rounded in medical knowlege even though he is only a Internal Medicine doctor.

The reason I mentioned about the new blood tests these are specific to Multiple Myeoloma which is what my Mother has a couple of my out of range blood tests fall in that possibility.

The PET scan takes aproximately 2 hours just for the scan. You also will have to allow time for the radioactive injection. I have had two PET Scans in the past three years, the only bad part is the waiting to find out the results. I was being scanned for Cancer. In regards to Cancer PET scans can be inaccurate they can be a false negative or a false positive I new that before I had it. My Mom also has had a PET scan, her scan was positive for lung and thyroid cancer. She did have both which was diagnosed by lab after surgery. I don't know about scanning for Lyme disease if the PET scan can be inaccurate or not or if they do something different when scanning for Lyme disease. This is something you should ask your doctor. Good luck with your PET Scan, it does not hurt at all, let me know what the results are. Take Care.

 
Old 05-10-2011, 08:22 AM   #6
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Re: High Protein Levels, Low Anion Gap, High Immunoglobulin

After several doctors and many tests I finally have a answer, it was the one thing I hoped I didn't have. I was told I have Multiple Myeoloma, this is what my mom had, she died one year ago. Now I can end all the test and doctors and just try to move on and enjoy life as much as I can.

Thanks for all your support and advice.

 
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