I would be concerned myself. I feel so sad for you because it seems like you are being ignored. I know you are feeling really sick and need someone to take you serious.
What does the doctors say to you?
If I were you, I would go into a health food store and ask to speak to someone knowledgeable. Usually one that is owned by someone and not a chain like GNC has workers that are knowledgeable. You just need to take this whole thing into your own hands. That's exactly what I did last winter when I was dieing. I started taking cat's claw to boost my immune system. I started drinking marine chlorophyll and taking hand fulls of fish oil. I was tired of drs. brushing me off. So when they tell me I'm taking too many vitamins I tell them they didn't see me when I turned gray and my BP was 60/40 and my pulse was 44. Desperate people do desperate things.
Doctors really don't have an answer yet. My Lupus tests come up negative for the Sm and the other one. My white count did go up to 2.9 from 2.1. My neutrophil's went up from 0.05 to 1.3 but are still a little low. I'm wondering if the neutrophils went up because my white count went up?
Dr. Bell who is my CFS specialist wanted me to see a Hematologist because of my neutrophil's. So my Rheumy's office called the Hematologist and I was supposed to see this doctor. But instead, the hospital office sent me to an Oncologist who didn't know anything at all.
But Dr. Bell said in CFS, the bone marrow is a little suppressed.
1. butterfly rash
2. discoid rash
3. sun sensitivity
4. oral ulcerations (sores in mouth or nose)
6. serositis or pericardium (inflamation of the lining of the lung or the heart)
7. kidney disorder (protein in urine, or abnormal sediment)
8. neurologic disorder (seizures or psychosis
9. anemia, low WBC, low platelet
10. immunologic disorder (blood testing indicating either antiphospholipid antibodies, lupus anti-coagulant, anti-DNA, false positive syphilis test or pos. anti-Sm)
11. positive ANA
(4 out of the 11 are required for a lupus dx)
how many of these 11 do you have?
SLE patients who have symptoms of achiness, fatigue, pain on taking a deep breath, fevers, swollen glands, and signs of swollen joints or rashes but whose internal organs are not involved are said to have non-organ-threatening disease. About 35% of lupus patients fall into this category.
If I understand their criteria, you have 4 out of the 11. The majority lupus patients have an elevated ANA. I believe the # is 95%. Skin is usually the first organ that is attacked. So you have the two main things that lupus affects.
Ask your dr. if he/she would try either Plaquenil or a 10 day pack of predinozone. Just to see if it helps. It takes Plaquenil 3-6 months to see improvement. I felt like a new person after 30 days. It seems like the longer I take it the better I feel. The nausea is gone, and my joints don't even swell anymore. They still hurt sometimes, especially in the mornings. But I praise God for being able to function. I'm happy and thankful.
January 23 I saw on Oncologist. I was supposed to have seen a Hematologist and they switched me to an Oncologist so I could get my appt. sooner. The Oncologist knew absolutely nothing. He said that's no his job and to go back to my doctor.
I'm not on any supplements.
Personally, I find it hard to believe that you have a problem with your bone marrow. I would think that your hgb/hct would be lower if you did and that you would be anemic.
I honestly believe that like the majority of CFS and autiommune patients, you have a successive infection. A decreased WBC is well known to be from viral infections, immunosupression and overwhelming infections/sepsis. If you are one of the two-thirds of CFS patients who have mycoplasma (L-form bacteria) infection, then that would explain your autoimmune symptoms. It happened to me. Before I started the pathogen killing treatment that I'm on, I had some symptoms of lupus (pleurisy). I also had photophobia.
"When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response. Our recently published studies demonstrated a possible link between mycoplasmal infections and CFS and FMS, since we found high frequencies of mycoplasmal infections in these patients"
Dr. Teitelbaum, one of the world's leading CFS physicians and a CFS patient, recognizes mycoplasma infections in his revised edition of "From Fatigued to Fantastic". Dr. Teitelbaum excelled academically and graduated from college in only 3 years.
Because your white cell count is so low now, I'm not sure whether or not you would qualify for treatment. (treatment makes you feel worse... due to the bacteria dying off. It is the same thing lyme patients go through). You need your immune system to fight off these infections.
I'm actually shocked to hear that Dr. Bell hasn't recommended any supplements for you ?!! There are three products that can help your immune system... you may want to discuss with Dr. Bell. I know at least two of the products have been recommended by CFS experts. There is host defense, olive leaf extract and transfer factor. In addition to that, the supplements recommended by CFS experts are magnesium, ACTYL Carnitine, COQ10, D-Ribose and others.
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