February 20, 2014

A new year

Posted in Uncategorized at 4:51 pm by serenamuse

Have any of you found that you have recurring UTI’s that never seem to grow bacteria on the culture? Do the doctors just make excuses, saying things like, well, the culture may have been contaminated, or we lost the sample, or maybe it is just too early for it to grow, you are just really sensitive to the pain? Do they just throw antibiotics at you, often needing a second round? Do the symptoms improve only to come back at a later date? Well, this has been me for the past ten years. I finally have a new GP who said, you are not having UTIs. I think this is CBP (chronic bladder pain) and sent me to a urologist. I had never heard of it, also known as interstitial cystitis. http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439 It is common among women who have other chronic pain issues, like fibromyagia, CFS, Parvo, though men can get it as well. The latest research suggests that it is not an isolated condition but just one more system in your body being attacked by whatever is causing your other pain issues. This makes sense to me as I had an infectious disease doc tell me years ago that the Parvo will affect every system in your body. Of course, there is no one way to treat it, and there is no cure. The first thing they have you do is go on a very restrictive diet until the flare up is over. I’m trying this now and believe me as a vegan I didn’t think I could restrict any more. I was wrong! Nothing to drink but water. Eliminating all

  • Alcohol
  • Artificial sweeteners (aspartame and saccharin)
  • Coffee
  • Citrus juices
  • Cranberry juice
  • Hot peppers
  • Soda
  • Spicy foods

but that is just the start. No fruit except blueberries and pears. No chocolate or chocolate flavored anything. No tomatoes. No nuts, except cashews and almonds. No vinegar, soy sauce or tofu. No bread that has rye or sour dough, or preservatives or MSG. No onions. I am having to rethink my entire way of eating. I’ve lost two pounds in two days. Crossing fingers that it will work! In the mean time life and food are very bland!

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33 Comments »

  1. Lynn said,

    I have IC too. Be very strict with the food for a while, then you can add some things in ONCE IN A WHILE. I still drink only water 99% of the time. My Dr put me on Valtrex 500 mg twice a day and it stopped the chronic parvo symptoms completely- pain, exhaustion. I take it continuously. It also stopped cold sores. This antiviral is the only thing that made a difference for the Parvo symptoms. I feel like I am healed. πŸ™‚

    • serenamuse said,

      How long have you been on the Valtrex? Are there side effects?

      • Lynn said,

        I don’t know- I used to just take it for a few days for cold sores. I think it was probably about a year or more ago that I started taking it every day. When I increased to twice a day that’s when the Parvo symptoms went away. 500 mg 2x per day. The symptoms went away quickly- within a few weeks or less. I plan to stay on it the rest of my life and have not seen any side effects. πŸ™‚

      • serenamuse said,

        That is really fantastic. I’m glad you found something that helps.

  2. Rebecca Miller said,

    Thank you for this. It happens all the time to me.

  3. serenamuse said,

    Interesting overview. http://chronicfatigue.about.com/od/whyfmscfsarelinked/a/ICbladderpain.htm

  4. Susana said,

    Have you found any doctors that will perform the ivig therapy? I would be willing to travel within US for it.

    • serenamuse said,

      I have not personally, but perhaps others will respond. If I remember correctly most of the people who have posted about it were from Canada…

    • Lynn said,

      It turned out to be interstitial cystitis. Go to a good urologist. They will prescribe pyridium for pain/frequency. Look up foods/drinks to avoid online- it will make a huge difference. Marshmallow root tea works well for it.

      • Lynn said,

        Oh shoot was viewing the comment on IC from tiny cell and didn’t realize there was more to your IC post until I posted my reply. I see now you already know it’s IC please disregard. πŸ™‚

    • Leslie said,

      Susana… I understand your hope and desire for IVIG therapy. I had four high-dose IVIG treatments, four months apart as insurance approval was VERY difficult and took great advocation from my doctor. They monitored my IGG level and DNA level before and after each treatment…. with no variation in either. The IGM level probably was long gone as the discovery of the DNA was made a year and a half after I first contracted parvo. Because we could not prove it had a beneficial effect, I was never approved for further IVIG. I don’t think many insurance companies will approve this treatment for parvo, unless there are accompanying really significant medical emergencies… not just awful pain. I wanted to respond because I sought out IVIG with a vengence thinking it would be the answer to all that I’ve suffered (literally) because of this virus. In the end, I was told that since my body had, in fact, produced IGG antibodies, and because the IGM was now negligible, the IVIG would be of no benefit. Maybe you, and others, would have a different outcome, but I just wanted to caution you against the notion that if you had IVIG all would be better. Not always the case:( I’m not trying to discourage you… just caution you.

      • serenamuse said,

        Thank you for sharing Leslie.

      • Susana said,

        Thank you Leslie for that, it makes me feel better especially after going to my Rheumatologist yesterday and mentioning it to him. I got the “look”. Anyways, when I told him that I felt I still had the effects of the parvo in me, he felt I had fibromyalgia instead, and that is why some of my joints were still hurting. He said he didn’t know if parvo could still be in my system to be causing the pain in my hands and the fatigue. He ignored most of what I had found, and just kept going back to the fibromyalgia. I did have a positive ANA test at the same time as the parvo diagnoses last July, he will continue to monitor it as he said I haven’t exhibited any signs of Lupus and I could just be that 5% that tests positive without having Lupus.

      • Leslie said,

        Just to add… I’ve had/have some difficult gastrointestinal problems (colitis) and severe neuropathy caused by this virus. Three years this month, and I’m still DNA positive. Constant suggestions of fibromyalgia, too, but I don’t have the tender spots. That was probably another reason I managed to get the IVIG that I did. I’ll forever wonder why parvo affected me the way it did when it’s supposed to be just a passing virus.
        Best wishes to all who find themselves here.

      • Melissa said,

        Leslie are you also on fb?

      • Teri said,

        Leslie, I know you posted a while ago, but I am wondering about your GI problems. I was diagnosed with Parvo in July, 2011 and have struggled with ongoing digestive issues since. It’s like I get “flare-ups”. I thought they were under control once I had my gallbladder out and went gluten free (all a result of Parvo, I know – along with MANY other problems.) I am currently having one of these flares, that last months, and can not eat. Everything makes me hurt. Having another scope next week, with a colonoscopy this time. Thanks!

  5. Melissa said,

    I have the same thing!!!! They thought I was having utis and it turns out it’s not, it’s inflammation and they final uh diagnosed me with interstitial cystitis. It’s misery!!! I hate this pain!! And I really don’t want the diet! I still have the parvovirus PCR in my blood, so I’m hoping this will all go away once I start IVIG.

    • Leslie said,

      Hi Melissa… what is fb? guess I’m not.

      • Melissa said,

        Are you on Facebook? That’s what I meant.

      • melissa said,

        Leslie, Please connect with me, I have had IVIG therapy for the parvo and would love to see if we have similar situations, I had the positive DNA for parvo for two years ! my email is mmitche2@gmail.com

  6. julia said,

    I regularly feel as if I’m getting a uti, but my doc usually dismisses it. I pee all the time. Has any medical expert told you that chronic Parvo is an auto immune disease. Doctors in Ireland still believe that you get Parco once, and that’s it. However my neurologist has recently said I have cfc. However he doesn’t believe it’s chronic Parco.

    • serenamuse said,

      Julia, you probably have interstitial cystitis. It basically is chronic bladder pain and they have linked it to other chronic pain illnesses. In a nut shell, I was told that it is just the Parvo affecting one more organ. There is no cure, just an anti acidic diet. It sucks. It very much feels like you have a uti but it never shows up on any tests as being positive.

      • Lynn said,

        If u are strict with diet in beginning then u can have some things sometimes without a prob or only temporary prob. Marshmallow root tea helps and urologist can give you pyridium for pain. I rarely take it. Watermelon seems fine for IC-for me anyway. I am ok with bananas too but peaches and strawberries make a problem. There are extensive lists online and also a book on amazon called Along the Healing Path. I drink water only except at church can handle lemonade or ice tea which are big no no’s for IC but due to water rest of week no prob. The main thing is to become pain free by strict diet in beginning and then can add things back in- moderately. DO NOT DRINK ANY CRANBERRY JUICE EVER AGAIN- it’s pouring acid on a wound.

      • melissa said,

        I wound up with the same thing as well, interstitial cystitis, it’s very difficult to deal with.

  7. gigi said,

    I am so glad to see some up to date posts here! I am 40 yr old female who has had 3 bouts of what I believe is Chronic Parvo B19 virus symptoms. It started in April of 2013 and occurred with less severe symptoms in October of 2013. It reared it’s severe symptoms again this past April. My symptoms start out with a cold sore/ sore throat, then I get little red painless dots on the inside of my fingers. Within days those multiply and usually are on both hands (3-4 fingers on each). After about 5 to 6 days my hands swell so much that I can’t even make a fist. To do virtually anything with my hands is a painful struggle. At this point my skin has become hyper sensitive and touching anything at all is difficult in the morning, by the end of the day the pain is so severe that I can’t bear to touch tactiles, do the dishes etc., (It is the initial touch that is so painful). Along with the swelling and the skin pain, at night my hands are incredibly itchy. Let me tell you, this is NOT a scaly rash that is linked to psoriasis. I would have answers! This is Bizarre! IN ADDITION to those symptoms, I also have joint pain throughout my body, in my first episode it was so bad, I could not walk 45 ft to my mailbox by 6 pm due to the pain throughout my body. The fatigue was incredible, I literally slept through days on the weekend’s. I fight through the worst weeks of an outbreak, because I run a childcare center. I have been to my Primary Care physician and to a very well respected teaching Hospital during my last outbreak. That led me to a Rheumatologist. I have sought out help of an Allergist/Immunologist recently. Upon looking at my own test results I saw that my Parvovirus B19 IgG Antibody had been flagged back in April at a level of <0.9 which is explained as on the line and patient should be retested in 2 weeks and then perform a DNA test to confirm.TO BE CONT.

    • Sondra Bailey said,

      Gigi did you get your second parvo test done?

  8. gigi said,

    Blood work just taken last week showed high levels of Urine Leukocyte Esterase and my Urine Random Protein/Crest Ratio was flagged high at a level of 223. Normal range is 21-161.To top it off my Rheumatoid factor was 17 with normal ranging from 0-14. This does possibly help explain the constant pain in my lower back and deepens the earlier findings of inflammation the showed in Rheumatologist’ s test’ back in April. I DON’T suffer From reoccurring UTI’ s! I don’t have bladder pain either! The only symptom that lingers is my back pain, mental fog….. and mood swings (especially-mostly) at the end of he DAY when my back pain is at it’s worse! OH I FORGOT TO MENTION…. WHAT DID I GET DIAGNOSED WITH? The rheumatologist labeled it as Raynaulds syndrome, however, she couldn’t understand why it only affected me periodically… Primary says, as I understand, these auto-Immune disorders sometimes take time to diagnose, wait ok another flair up, and we will follow-Up. JUST WHAT we WANT TO HEAR…. THAT WE WILL HAVE TO ENDURE WEEKS TO MONTHS OF PAIN, WITHDRAWING FROM OUR LIFE, CRY OURSELVES TO SLEEP, WHILE PRAYING THAT THIS WILL BE DIAGNOSED AND TREATED! To know that a DR. Will say….. “We got it” and people will stop guessing what it is…. I am not a name that Disorder game…. I LOVE LIFE AND RESPECT LIFE! I VALUE THAT SOMEONE ALWAYS HAS IT WORSE THAN ME, I WOULD JUST LIKE to be HEARD and not just LISTENED and NODDED at and then politely dismissed…ANY WORDS APPRECIATED!

  9. Sondra Bailey said,

    I have been sick for 6 years with severe muscle pain and fatigue. I was diagnosed with Parvo and CFS 3 months ago. Im a nursing student in my last year. Im on this site to look for medication or remedies to help me. I noticed a lot of people dont understand about viruses. Parvo is a virus. Viruses are virilent. Viruses cause disease by destroying or damaging the cells they infect, damaging the body’s immune system, changing the genetic material (DNA) of the cells they infect, or causing inflammation that can damage an organ. Once you have the virus your immune system is lowered exposing you to new immune disorders. You have to wash your hands and dont expose yourself to anyone that is sick. Any symptoms are possible. I have had a ton of strange symptoms that come and go but the severe muscle pain and CFS have stayed. My doctor put me on a cocktail of medicine that helped me a lot. I was able to walk and get better but still my quality of life isnt where it should be. Here are the meds. (methotrextate, Low dose naltrexone, and quinacrine) the last two meds are compound meds.( they have to be made by a special pharmacy). The drugs calm your immune system down so its not attacking your system as strong.Has anyone on here had any success from other types of medication or treatment. Has anyone tried intravenous immunoglobulin?I go to new infectious disease Dr next month and Im requesting the intravenous immunoglobulin.

    • Melissa said,

      Sondra thank you for sharing your experience. I have had it for two years now, two years and three months, actually. I have been on IVIG therapy, this past summer, I had a hematologist who put me on intensive IVIG, I had a total of 8 days of high intensity treatment. 35 grams a day. I had three sessions and each one did trigger aseptic meningitis, but my PCR for the virus finally went negative. I had a positive PCR for the virus for two years! I have been very sick, my doctor has me also on plaquenil. I feel like methotrexate may work better maybe?? It’s all very confusing, as I’m on plaquenil and also on weekly IVIG, I am now on 4.5 grams a week via subq…

      • Sondra Bailey said,

        Melissa. Thank you for your reply!! Are u feeling better since the IVIG treatments? I was sick for 6 years with this disease and just found out the official diagnosis 3 months ago. I’m still very sick but better since I got on the meds. Before the meds I had swelling over my whole body , severe fatigue I slept about 15-16 hours a day , I couldn’t hold my arms up to drive and it hurt my muscles so bad to walk from the bed to the couch. I had to get on disability. When the doctor put me on the methotrexate , low dose naltrexone and plaquenil ( I had reaction to plaquenil and they changed it to quinacrine ) . The three drugs combined calmed my immune system , reduced my swelling, and pain. I was bed bound on the verge of suicide and now im where I can get around but I’m still sick.

      • Melissa said,

        Oh wow Sondra.. i am so sorry you have had such a hard time. I was bed bound too, we really should connect. I have started a FB group as well, if you want to join us there. https://www.facebook.com/groups/500411196744631/?ref=br_tf

        I do feel better since the IVIG, but I am nowhere near the same. I am always exhausted and always have pain. My joints were so severely affected that I had to have two spinal surgeries within 7 months of each other. My first surgery failed and I needed a spinal fusion.

      • Sondra Bailey said,

        I’m so sorry Melissa I have problems with my disc in my back also. I sent a request to your FB page. I look forward to talking to you and sharing information. Thank you.

  10. Annie Johnston said,

    Dear everyone

    I was diagnosed a month ago with Parvovirus having previously been diagnosed with polymyalgia Rheumaticawhen in June 2014 I was put on Prendisolone which I am now tapering off and am currently on 10m. Anyway I have found an amazing natural cure my friends cannot believe how well I’ve been over the last three weeks since I’ve been on the miracle remedy especially as I’ve been reducing the steroids.

    I live in London UK and there is a small shop called Dulwich Health in Gypsy Lane. I’ve been taking every day and evening 2 teaspoons of Allicin the brand name is Allitec and taking Oxytech – ( for Oxytech you take 1 tablet then increase daily by a tablet so on day 10 you are on 10 tablets this flushes your system) .
    The Allitec is pure garlic liquid and since I’ve been taking that and Oxytech I’ve been pain free!!!! If you google Alli Tech or Allicin it should tell you all about it – in short allicin is a powerful anti-parasitic,antibiotic, anti viral, anti fungal and immune booster. It’s truly amazing and can boost your immune system, prevents infections from returning and invading your body, it fights and protects us against parasites. I have also invested in a radi tech which you will find on the Dulwich Health website – 3 weeks ago I was in immense pain, crippled couldn’t put my socks on was a mess, and was terrified how I was going to cope no longer being on steroids. I swear by this cure as I should be more sick as coming off those steroids. If anyone needs any further help you can email me on annijohnston@gmail.com
    Annie


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