Cryptostrongylus Pulmoni anyone????????

Discussion in 'Fibromyalgia Main Forum' started by Defor, Jan 26, 2008.

  1. petechan

    petechan New Member

    Hello Everyone, I am sorry if my last email sounded evasive but I just don't want to get my hopes or anyone else's up at the moment. I did mention that a different parasite was found in my blood at a hospital in London,It seems that if you mention AW s name (which I was unsure of) you automatically get the kiss of death on referal.The specialist there was horrible and told me I was lazy and needed to loose weight,He believes that it is so rare to have a parasite in your blood that it must be a false positive, I have offered to pay elsewhere I have to wait for another blood test in december.I have tried to call AW but he has not responded. I think we are in this on our own.
    Take care everyone
    Will keep you posted x
  2. Webbie

    Webbie New Member

    Hi Petechan,

    Thanks for your update. I hope you can get to the bottom of your parasite problem.

    Hi All,

    I thought it would be helpful to let you know how my present treatment is progressing.

    Dr Wright found borrelia and cryptostrongylus pulmoni in my blood, so prescribed 3 months of Doxycycline and Metronidazole, plus 6 doses of Ivermectin(taken once a month over 6 months).

    Well, I’ve finished the 3 months of Doxycycline and Metronidazole, still have 2 more doses of Ivermectin to take.

    I was making some small improvements initially - able to do a few more minutes on the computer, spend a bit longer on my feet on occasions and walk about the house a bit more occasionally. Unfortunately, I then made some mistakes when trying to pace myself, overdid things, and caused a set back.

    Have lost any improvements made with regards to my ability to spend time on my feet / walk about the house. But managed to increase time spent on computer a little bit more since the set back. Unfortunately, over the past few weeks, I have been struggling to maintain this increase, so have had to ease back on the amount I am doing on the PC. Thankfully, as a result, my symptoms seem to be easing.

    What I do on my feet is limited by fatigue, what I do at the computer is limited by pain. Both are a sign that I’ve done too much.

    Hope to report some improvements the next time I make a post.

    Warmest regards, Webbie

    [This Message was Edited on 10/03/2008]
  3. polvani

    polvani New Member

    sorry PeteChan, but on 23rd June you wrote

    "My mum has suffered from CFS for years now and like everyone else, searching for the cause.

    I am interested in this recent discovery. Where is this UK doctor based and how do we contact him?

    Is there a set treatment plan or is it individual?

    thanks for any help


    and you then go on the next day to say that YOU are being treated by Dr Wright and have been since February
  4. Bluebottle

    Bluebottle New Member

    Since starting the treatment I have done nothing but cough up phlegm, all day every day - well, it is a lung worm. I wonder if anyone else is experiencing this?

    it's weird because I could hardly breathe beforehand & was told by my GP it was because I was unfit! My lungs must have been full of the stuff.
  5. Webbie

    Webbie New Member

    Hi Bluebottle,

    I have been treated for c.pulmoni/worm, but thankfully have not had problems with coughing up a lot of phlegm. I hope your lungs have cleared now and that your breathing has improved.

    To All,

    I thought it may be helpful to let you know how my treatment with Dr Wright was progressing:

    In all, I have completed 4 courses of treatment with Dr Wright....with no obvious lasting benefit to my health. The treatments were Samento, or Ivermectin, or a combination of Ivermectin and other treat borrelia, chlamydia pnuemonia and the worm/cryptostrongylus pulmoni.

    I have been off work for 6 years and gradually getting worse. Admittedly, I did seem to improve a little during some of the treatments (seemed to respond to Ivermectin, an anti-parasitic drug), but then relapsed and got worse every time. Nevertheless, I'm glad to have been able to atleast try them.

    Have decided this year to go back to basics and get the foundations of my nutrition far as I am able. Have assessed my health using some of Patrick Holdford's books and by what my body is telling me. Have improved diet and am on a supplement programme, including supplements to improve my digestion.

    Hope some of you have made some improvements.

    Warm regards, Webbie

  6. johnwun

    johnwun Member

    Why is the last mention of this from 2009? Is anybody looking at this now?
  7. JaciBart

    JaciBart Member

    Been tormented with parasites for 3 yrs now

    This is all very interesting to me as the Docs are treating me as if this is 'delusional parasitosis'. To my knowledge this particular one has never been mentioned, tested for or even considered. I have dealt with Dermatologists, Internist, Infectious Disease Specialists, and they are all treating me as if I am a loony bird. My problem is most apparent in the scalp just under the skin, just barely below top layer covering most of scalp. I have huge areas of complete hair loss, have to wear wigs now as I look like a freak.

    It started after 3 rounds of cipro 10 days, one round after another in an attempt to rid my upper sinuses of chronic long term staph. After the 3 rounds, I think I became resistant but all of a sudden my head swelled so huge and had like what felt like an inch of fluid, sticky, stinky, it was pus, turned out to be MRSA and was put on Levaquin. Suffered 3 months of all of the worst side effects that Levaquin causes. Once the infection seemed to tame down all of the fleshy tissue turned into fungus. That was an attractive environment to parasites. I literally learned more from my doggy's Vet than all the Docs I have seen in all this time. As far as Ivermectin, a few times I was lucky enough to get a script for it but never in all this time have I had one Dr believe what was going on enough to give me a long term treatment on Ivermectin or Diflucan. I believe had I just been able to once do 3 months of Ivermectin and Diflucan I would have been able to have it finally end. I literally have been living all this time with their lifecycle determining what my scalp will be going thru.

    I do cough up sputum with what looks like the eggs in the mucous. If I look at my blood under my microscope, inside the red blood cells, which have very fuzzy cell walls, thick and fuzzy, inside about 1/3 of the cells have inside of them what looks to be a tiny little curved worm.

    But, what do I know, I am just a loony bird. Delusional. And, all of a sudden at 50 yrs old started pulling out her own hair. For no reason. Psychlogical issues.

  8. johnwun

    johnwun Member

    Hey Jaci,
    Sorry to hear your going through this. Glad to hear someone is still on this forum though.
    I don't have any suggestions for cure, but I've been combing the internet for rational discussion of this affliction that don't involve hawking some product.

    The best I found so far is the following. This Pathologist gives a chilling account of the inability of modern medicine to diagnose, much less treat patients with spyrochite related infections, and goes in to it's history and connections to other (seemingly unrelated) diseases.
    So much information and clarity packed into one talk...

    Part I
    Part II
    Part III

    Hopefully it gives you something to show your medical professional.
  9. johnwun

    johnwun Member