Abdominal Pain, Diarrhea, Vomiting, Black Stools, Low Platelet Count, Bumps On Tongue, Headaches. Fibromyalgia, CFS Or HIV?
Took an EKG test and didn't see anything abnormal but did send me to wear a Holter for 24 hrs. to monitor heart activity.Everything with my heart checked out okay. XXXXXXX 11th,2012 wed. The Hematologist called to say the blood looks good but the platelets dropped again for the 3rd test in a row,down to 45,0000 from 50,0000 and the HIV ab1/2 blood test was negative. I looked at a past history of my platelets from 3 yrs. ago and they were at 189,000. XXXXXXX 16th 2012 , I went in for a bone-marrow biopsy.They took Marrow,Bone fragment & Blood. I also went to the lab for more blood work for Hepatitis Test and a Viral Load quantitative RNA test for HIV. Results came back non reactive on all but the platelets remained at 45,000. XXXXXXX 20th 2012 fri. My joints have been sore for sometime and my neck is a little stiff. My left knee which is bad to begin with is making it difficult to walk at times XXXXXXX 30th tues. I went to GI Dr for a scope down my throat. I went to him a year earlier for a colonoscopy due to my father having a small amount of colon cancer. My results were negative and my scope was as well.Feb 15th 2012 my Platelets went up for the first time from 45,000 to 54,000. March 15th 2012 thurs. Platelets up again from 54,000 to 60,000. April 13th 2012 results down from 60,000 to 57,000. Sun April 22nd my hands and feet are starting to tingle and ache.This is still continuing today and has been about a month now.May 15th 2012 tues. I went to see my Family Dr. about the tingling in my hands and feet & He ordered more blood work. I tested Positive XXXXXXX Low Vitamin D (22.3), and platelets slight drop again from 57,000 to 55,000. I went to the Rheumatologist for more blood and urine test. In addition to all the symptoms above, i now noticed what appears to be little red bumps on my tongue and the right side of my jaw was starting to ache a bit.I have a few bumps on the sides of my tongue that started to appear around early XXXXXXX The bottoms of my feet have been causing me some pain for almost 2 months now. My b12 normal,metabolic normal, thyroid normal, Rheumatoid arthritis negative. He did test for Lupus and Lyme disease which came up negative and additional blood work. Which he said all looked pretty good. I have NO skin rash. I do have an uncle that has MS. My platelets have remained low between 30,000 and 60,000, I am very fatigued and taking afternoon naps cause the lack of energy.The bottoms of my feet are still a bit painful and difficult to get out of bed in the morning for about 2 months now.My hands are not as bad but a little joint pain.Sometimes i feel that I have to think about recent events more than usual. My memory at times is a little foggy. Occasionally my neck and back get stiff.
I'm 43 and felt like i was still in my 20's until that one night in Nov. out to dinner. Everything has gone down hill since that night. I'm not sure if something with the food could've triggered something that is the cause of this? It just seems odd that I felt great and 20 yr.'s younger with no medical history at all,then all the sudden i woke up in severe abdominal pain a few hrs after a late dinner at a restaurant. From that point on i went from no history to now carrying a folder full of test files over the past 7 months. Another question,How ACCURATE is HIV test? I had an HIV 1/2 AB screen at 87 days since possible risk that came back NONREACTIVE result. I also took an HIV RNA Quantitive HIV PCR Quant,Log 10 Hiv and the results came back Not Detected. This test was 94 days after possible exposure. Are these ACCURATE results? Am i out of the woods with those test? Just to recap, my platelets have been in the 40k-60,000 range. I just tested Positive XXXXXXX 1:1280 and a Vitamin D level at 22.3. Pain in the bottom of both feet lasting about 3 months so far,mild ache in both hands,extreme fatigue in the afternoon,mild headaches that come and go only lasting a few minutes,occasional stiff neck.I feel at times i have a little bit of foggy memory where i have to think harder about what i may have done last week.I can remember but it seems to take time to really think about it. I have not noticed any fever or weight difference at all.No loss of appetite.No Swollen Lymph Nodes.My stomach has been causing a mild belly ache the past few weeks that just feels a little off.I was retested for my XXXXXXX which this time came back 15.It's been 8 months so far and the frustration and stress of not knowing what's wrong is killing me I keep reading about Fibromyalgia & CFS . Can any of these be a cause or is that something that could develop because of something that brought it on? I'm Lost and very scared especially about if there's any HIV possibilities? Is my HIV 1/2 AB screen test & Viral Load i did at 94 days (since possible exposure) accurate to where it can be taken off the list? Thank You, XXXXXXX
Thanks for the query.
I went through the details submitted with diligence and I see your concerns are:
1. Accuracy of HIV tests
2. Persistently low platelets
As far as accuracy of HIV tests are concerned, let me reassure you that the tests you have done are extremely sensitive. Polymerase Chain Reaction (PCR) detection of HIV is almost 100% sensitive and doesn't lose in picking up HIV infections. A negative HIV PCR rules out any suspicion of HIV beyond doubts. So be rest assured you do not have HIV.
Persistently low platelets which is described as chronic thrombocytopenia is many a times detected coincidentally while investigating for other causes. The events on the thanks giving don’t bear any relationship with the occurrence of low platelets. It is not like you had some food / drink and you developed the low platelets; I wouldn't be wrong to say - you've had it since a while and it showed up on thanks giving day.
Yes, the persistently low thrombocytopenia is concerning and I have two things in mind - Is it related to an immune mediated cause or is it an idiopathic (where no cause is found)?
Positive XXXXXXX does indicate towards an immune mediated condition. It is good that you've been tested negative for lupus, HIV and Hepatitis. Apart from this, there are some reports that other viral infection such as Cytomegalovirus, Helicobacter pylori could also be associated. I would like to rule these infections out too, presuming aplastic anemia were found. Review all your test which have been done yet and discuss further about these options with your hematologist /Rheumatologist.
If all the tests come up normal, then the episodes of body aches, painful feet and joint soreness could be related to fibromyalgia which may be treated independently.
I understand you are disappointed with the way things turned up one fine day, but looking at the bright side I see you do not have any signs of serious bone marrow disease including cancer; no serious viral infections; low platelets that has not caused any bleeding episodes and no symptoms of connective tissue disorder. With close watch and regular follow-ups with your doctor's, you should be able to lead a better quality of life.
Hope this answer is informative and assuring. Let me know if you have any further concerns.
Thanks again for the follow-up query.
If your are still concerned about HIV, then let me doubly assure you that if there wasn't any risk exposure after the HIV tests, then there is no chance you could have the infection.
To answer your queries,
1. About window period for HIV
a. Average window period for antibody detection test is 3 months
b. HIV PCR test is as low as 2 weeks.
Since the PCR test was negative at 94 days, it is 100% accurate and there is no chance you could be suffering with HIV. Please be rest assured of this fact.
2. Fibromyalgia can cause myriad of symptoms ranging from body aches, mood disturbances, depressive symptoms to burning sensation, etc. However I haven't heard that they can cause drop in platelet counts.
Diabetes, alcohol, chronic fatigue syndrome or feet might be a neuropathic symptom. It may be associated with metabolic abnormalities including low vitamin D levels. Other parameters including positive XXXXXXX diabetes and alcohol too could be contributing. Apart from the positive XXXXXXX other parameters can be corrected through a competent physician. I believe this correction can partly relieve this burning sensation.
4. It is surprising to know your platelets were normal before the thanks giving day. But your history of least drug usage and normal good news.
5. Positive XXXXXXX titres of 1:1230 are significant and suggestive of an autoimmune condition. In the presence of such positive titres, it would be difficult to name fibromyalgia / CFS as the primary cause of all your symptoms. If it helps, you may consider a second opinion from another rheumatologist to review all the tests done. He/she can consider repeating the lupus anticoagulant antibodies and other extractable nuclear antigen antibody (panel of antibodies) to rule out each and every autoimmune conditions. You will also need to consider family history of autoimmune problems since one can have positive XXXXXXX titres in the presence of autoimmune disorders in the family.
In all, I understand the abrupt appearance of health problems without a clear cause is both disappointing and frustrating. However as I mentioned in the earlier reply, you have plenty of positives. I am really glad to know that most of the serious problems including HIV and cancers are ruled out. You may consider reviewing with another experienced rheumatologist to review all your reports and perhaps give you more clues as to what really is happening. My bet is that you probably have an autoimmune condition and that is in control. Definitely not HIV!!
Hope you found some positives which you can take forwards. Work closely with your rheumatologist, hematologist and your physician.
Let me know if you have any further concerns. If all your queries are answered, please close this discussion.