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jean15770
jean15770

I'm 39 year old male. I have suffered over 2 years from a strange set of symptoms. Headache, ear ache, dizziness, balance problems, vertigo, tinnitus, malaise, fatigue, nausea, and gastritis. I have also persistent eczema in fingers. Blood test are normal except complement level low CH50 is low 23 (should be over 30), C4 is 15 (just within normal range), WBC slightly low 3700/microl, creatinine slightly high 1.2 and low IgM immunoglobulin. Occasionally occult blood and protein in urea. First diagnozed with Meniere's disease but the doctors were later sceptical about it due to atypical symptoms. Maybe some kind of systemic autoimmune disease. Tried Valacyclovir for 3 months and it really helped a lot. However, EB virus, VZ and HSV tests are all negative IgG and IgM. Anti-dsDNA negative also. Problems now with Valacyclovir because of kindney concerns. I do not take other drugs. What do you think may be causing these symptoms? What kind of tests would you suggest?

 

0 likes, 8 replies

8 Replies

  • jacqueline01135
    jacqueline01135 jean15770

    Posted

    Gosh what a list of ''orribles. I suggest ,the first flight out of here to Barbados,

    and, stay there until you feel better.  

     

  • mrsmop
    mrsmop jean15770

    Posted

    Hello Jean,  I have had a rare kind of uveitis [eye inflammation] for very many years.  The most recent thinking, is that it was triggered by the herpes virus.  I had chicken pox as a baby, shingles at 11, Glandular Fever at 18, though, interestingly, never any cold sores.

    A couple of Ophthalmologists who were doing a lot of research about 4 years ago, said they wanted to try me on Aciclovir 800mg per day.  I started taking it  in 2 x 400mg doses and since then,  I have not had anything like the number of flares that I used to have, so I am currently on a maintenance dose of steroid eye drops, of one drop per day.  They have told me that I will be on the Aciclovir for life.

    I am only telling you this because perhaps you would benefit from taking it for life too.  Then we get to your kidney problems, what are they, have the doctors said?

    I know that on the instructions that come with the drug, it tells you to take with copious amounts of water and, I see that the drug I have, can be dissolved in water if necessary.  I also know that you have to have regular liver function tests while on it.

    What dose are you on and I wonder whether the drug you take is chemically the same as mine, or whether they differ slightly depending on manufacturer?

    Good luck Jean.

     

  • suzanne00
    suzanne00 jean15770

    Posted

    Hi Jean--Have you had a thorough work-up for autoimmune disorders and antibodies?  ANA (antinuclear antibodies), Sed rate, CRP, etc. to look for general signs of autoimmunity, as well as panels looking for antibodies.  One problem with antibody testing is that autoimmune disorders overlap so many specialties, but a rheumatologist might be a good person to check with for some of these. There is also a lab in the US that does a wide-ranging panel to look for antibodies all over the body. You can private message me if you'd like the name of the lab that does the big panel (I just had it done recently and it was very interesting and fruitful). Also, has anyone suggested Chronic Fatigue Syndrome or Autonomic Dysregulation to consider (which both can be related to autoimmunity). Are you trying any dietary changes (e.g. whole foods, no gluten/dariy, etc.)? You can search the internet for diets related to lowering autoimmune issues, if you think that might be underlying some of your issues. All my best to you.  --Suzanne
  • jean15770
    jean15770

    Posted

    Thank you very much for the ideas. ANA turned out negative, CRP is normal. I do not have any antibodies against HSV-1, HSV-2, Epstein-Barr nor CMV either. So it's a mystery why valacyclovir works so well.

     

    • suzanne00
      suzanne00 jean15770

      Posted

      That is mysterious!  Thanks for updating us. I hope that you are able to get some other ideas to investigate. Maybe some other hidden virus or something they haven't detected yet? I hope that you are eating a clean diet, taking vitamins perhaps, and exercising some to optimize your chances of healing!  I hope that you feel better, soon!  --Suzanne
    • jean15770
      jean15770 suzanne00

      Posted

      Thank you. They found a slightly enlarged spleen but no sign of CMV, EBV nor HHV-8 in the PCR. I have also mild pancytopenia. I recently restarted valacyclovir and began to feel better. Then I had to stop it again due to abnormal amount of blood cells in urea. Unfortunately all the symptoms came back again. Do you think valacyclovir might be effective against other viruses?

       

    • suzanne00
      suzanne00 jean15770

      Posted

      Wow, it does make me wonder if the valacyclovir is helping some unknown virus. You've gotten a lot of testing, but no one able to put it together yet. The kidney issues are concerning, particularly now that the medication that helps can't be used. What do they make of the pancytopenia, low complement levels, and enlarged spleen? Do you feel your doctors to be addressing this adequately? Are there any infection or autoimmune specialists who you might go to? I would be feeling pretty frustrated and discouraged if I were you (I also have had more than my fair share of medical mystery problems). I'm sure that it would be a relief just for you to get a diagnosis so that you could know what is going on with your health. --Suzanne
  • lisalisa67
    lisalisa67 jean15770

    Posted

    Have you seen an opthamologist for a full exam? You should. I had viral labrythitis many years ago. I have optic nerve pallor now. Oddly santhelesma as well but no clue on that because blood levels appear fine. Anyway extremly good idea to go to a opthamologist not an optomologist you need a opthamologist.
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