Cryptostrongylus Pulmoni anyone????????

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Defor, Jan 26, 2008.

  1. Webbie

    Webbie New Member

    Hi Petechan,

    I am being treated by Dr Wright, he is based at Markland Medical Services Ltd, Bolton, England. Tel 01942 819301. I think his office is open Mon-Thurs 9am-2.30pm.

    Hope this helps.

    He has done some more blood tests on me and I am to speak with him on the phone tomorrow to find out the results and what treatment he recommends.

    Warm regards, Webbie
  2. petechan

    petechan New Member

    Yes I have started treatment for the above in march 2008 after a test showed it in my blood. after a short course of ivermectin I have never felt so well in my life with all my symptoms disappearing but just 12 days later all my symptoms returned and I am much worse than I ever was. I always had a fine rash around my torso visible mainly in the mornings which disappeared with treatment.This rash has now returned.
    Regards Petechan
  3. petechan

    petechan New Member

    Hi Defor, yes I am being treated by Dr Wright in Bolton I just dont know after being so well I am now so ill again
    cheers petechan
  4. Defor

    Defor New Member

    Oh I am so sorry to hear that your are ill again. I haven't tried this yet but I know of people who have or are trying it.

    I don't have any feedback yet but Rooftile's wife Margaret is now very ill and she's tried all sorts of treatments from Dr. Wright.

    There MUST be a way of getting rid of these flipping parasites/worms without killing off the host!

    I hope that you get back on track very soon Petechan.
    Sending best wishes,
    Defor.
  5. Webbie

    Webbie New Member

    Hi Pete,

    Sorry to hear that you had a relapse after an initial improvement, when you took Ivermectin.

    From what I have read and been told, I think this is because of the nature of the worms lifecycle. Often people need treated for the worm over a period of a number of months to completely eradicate it.

    See article that has been mentioned earlier in this thread:
    http://www.patentstorm.us/patents/5645819/fulltext.html
    Here's the relevant bit of text in relation to C.pulmoni

    "Because the parasite can reproduce in the host and its larvae can re-infect the host,
    repetitive treatment at an interval less than the generation time is
    needed to receive significant and lasting therapeutic results. Recurrence
    of the subject's symptoms at about two-week intervals implies that the
    organism has a generation time of at least two-weeks."


    Dr Wright was very keen to know how I was 2 weeks after finishing my course of Ivermectin. Today he told me that the worm has a life cycle of 6 months.

    After looking at blood samples I sent him last week, he has found some worms still in my blood ( was on a 2 week course of Ivermectin 3 months ago ) and also some borrelia. As a result he has precribed Ivermectin once a month for 6 months and Doxycycline daily for 3 months to hopefully kill off the worm. He has also prescribed Metronidazole to treat the borrelia.

    Will let you know how things go.

    Warm regards, Webbie[This Message was Edited on 06/26/2008]
  6. jaded_lady

    jaded_lady New Member

    What doseage has everyone used that has used Ivermitcin and how long did you take it for?

    From reading this, it seems some have taking the Ivermitcin without testing positive for the worm. Is that the case?

    Thanks.
  7. Webbie

    Webbie New Member

    I have been on Ivermectin twice previously.

    End of 2007 - took 12mg, for 3 days, each dose was 5 days apart ie. 12mg on Day1, Day7 and Day13. Took this with 2 other antibiotics, with no effect.

    Three months ago - Took 12mg daily for 3 days then every 3rd day for 4 further doses ie 7 x 12mg doses over 15 days. I received some benefit from this.

    Still have worms in my blood when tested last week, so my doctor has prescribed 12mg Ivermectin once a month for 6 months and 100mg Doxycycline twice daily for 3 months, which will also helps kill off the worm. Also have to take Metronidazole to clear up borrelia. Am about to start the course of treament tomorrow.


    Warm regards, Webbie

    [This Message was Edited on 06/27/2008]
  8. Webbie

    Webbie New Member

    Hi Kelly,

    Thanks for your words of encouragement.

    Hope your health improves too.

    Warmest regards and best wishes, Webbie
  9. petechan

    petechan New Member

    Hi everyone,
    For the moment I have just been prescribed doxycycline and not ivermectin, I have had no improvement in my symptoms. Webbie how are you getting on? as we are both under Dr Wright, and have both been prescribed similar drugs but in different doses.
    Cheers
    Petechan
  10. Webbie

    Webbie New Member

    Hi,

    Sorry for the delay in replying, I've had quite a lot of work to do on the computer recently and have been unable to get time/energy to check in with the forum.

    I have been on 100 mg doxycycline twice a day for 3 weeks now ( aswell as cycling Ivermectin once a month and Metronidazole for 5 days every 2 weeks ). The mixture of pills is to treat borrelia/?lymes and the worm.

    Since starting the above cocktail of tablets, I have noticed some benefits - my speed of recovery seems to be improving, and it seems that I'm not getting sore as easily as usual, when working at the computer. Let's hope the improvements continue.

    Let me know how you are getting on too.

    Warm regards, Webbie

    PS I am making sure that I take the doxycycline on an empty stomach, an hour before any food, and 2 hours away from eating any dairy products, as they contain calcium that can reduce effectiveness of drug. Thankfully I am able to tolerate the drug on an empty stomach at present.


    [This Message was Edited on 07/17/2008]
    [This Message was Edited on 07/17/2008]
  11. petechan

    petechan New Member

    Yes I know what you mean about having the energy and finding the time to reply.My health is now very poor and I am so much worse than before I started this treatment. Webbie did you ever take 12mg Ivermectin running every day for 12 days, this is what made a big difference to me at that time which was back in february.
    Cheers
    Petechan
  12. Webbie

    Webbie New Member

    Hi Petechan,

    Very sorry to hear that you are so unwell at present. I do hope, that in time, you will be able to work out a treatment regime with Dr Wright that will prove beneficial.

    The most Ivermectin I've been prescribed close together is one 12mg tablet a day for 3 days, then one every 3rd day for a futher 4 doses. This means I took 7 x 12mg tablets over a 15 day period. I found I received some benefit.

    From 2006 - 2007 I did some very useful nutritional work with Niki from the Optimum Health Clinic. They have a lot of info on their website and do an initial 15min free chat, so you can ask questions and see if you would like to start any programme of treatment with them. Niki has a number of patients who are liasing with Dr Wright aswell.
    Two of their websites -
    www.theoptimumhealthclinic.com/index.html
    www.freedomfromme.co.uk/index.html

    Best wishes, Webbie

    [This Message was Edited on 08/02/2008]
  13. Webbie

    Webbie New Member

    Hi French,

    Thanks for your post and pleased to hear you are feeling a little stronger.

    Looking forward to hearing about how you are at the three month mark.

    Best wishes, Webbie
  14. getwellgirl

    getwellgirl New Member

    I just wanted to say that muscle twitches are so common to an underactive thyroid/and or adrenals. With both these problems which might originate in the pituitary one can have normal blood tests but a trial of low dose hydrocortisone and or Armour can make a massive difference to how one feels.

    AW told me I had borrelia many years ago and that was the reason for my problem, but it wasn't I have adrenal insufficiency and hypothyroidism and with the right meds I have improved so much physically and suffer very little pain unless I get a migraine or really overdo physcal stuff like being active for 6 hours non-stop!

    If you don't feel any benefits from 3 months of his treatment there is probably something else going on. I regret the year I spent on antibiotics following his varying protocols during 2003/4 cos they always made me feel worse because they often blocked the effrect of my steroid which is what my body really needed but in a higher dose than he was prepared to give me.

    Over the years I have come across a huge number of patients of AW who did not improve so I have to say I take everything he says now with a huge pinch of salt but that is not to say that some people who have probably travelled abroad a lot do have this problem.

    Finally he used to treat the thyroid and adrenals as a priority but since he got into his borrelia and now CP theory he seems to have forgotten it all saying that they are causing the problem but I am convinced it is the other way around. Many many studies have shown up the problem with the HPA axis in CFS/ME but they cannot find the borrelia in the blood of so many people who are told this is keeping them ill.

    Pam

  15. Webbie

    Webbie New Member

    Hi Pam,

    Thanks for your post. It was very interesting to read, and certainly some food for thought.

    Glad to hear that you are much improved.

    Thanks again, Webbie
  16. Defor

    Defor New Member

    Hi Get Well Girl,
    I was very interested in your e mail. I've been looking at adrenal fatigue lately and it sounds as if that's what I've got too.

    I sent blood tests to AW a few years ago and I tested positive for borellia. I cannot take antibiotics now so I didn't follow it up.

    I have many symptoms of a low thyroid...except I haven't lost weight and I haven't lost the outer third of my eyebrows. I've read that this can mean that you can still have a thyroid problem and the inability to gain weight sometimes happens as you get older.

    My GP and endocrinologist are adamant that my thyroid is OK and my blood tests are within the normal range although on the low side.

    There is a lot of controversy about the reference ranges being set too high in the UK.

    I was prescribed thyroxin by a private doctor about 10 years ago but I developed hyperthyroid symptoms on a low dose and my eyes began to protrude (as in Graves disease). I am frightened of taking it again as I tried three times (on my GP's advice) and the hyper symptoms happened again time on even lower doses.

    I do believe that I have adrenal and/or thyroid problems but getting some help with it is nigh impossible.

    Good luck,
    Cheers,
    Defor.







    [This Message was Edited on 08/16/2008]
  17. wanderingbluedragon

    wanderingbluedragon New Member

    All I can say is I will never be able to sleep again. Oh wait..I all ready wasn't! Whew! Ok everything is back to normal.

    blue
  18. Bluebottle

    Bluebottle New Member

    i have been diagnosed with borrelia and cryptostrongylus pulmoni by Dr W too after 20 years of severe M.E. & fibro.

    My prescription from him was three weeks each of three different antibiotics, then a two week rest then repeat. In addition I take Ivermectin 3 days running, then one every four weeks. I'm taking salt baths, garlic, olive leaf extract and cat's claw too.

    It amazes me that we can have useless GEt & CBT on the NHS, but no tests or treatment that actually help us.
  19. petechan

    petechan New Member

    Its been a while since I have been able to chat as i am now so ill and much worse since starting this Dr Wrights treatment,But somthing strange has happened, I have been for a test at the Hospital for Tropical diseases and somthing else has shown in my blood, I will update everyone when I get further info as the whole procedure has been a total fight. I really do hope that you are benefiting from Dr Wrights treatment, we need to here some good news, will keep you posted.
    Love to everyone
    Petechan xx
  20. Defor

    Defor New Member

    I'm so sorry to hear that you are so ill now....I hope that you improve very soon.

    I wonder what has shown up in your blood tests. I hope that it's something they can treat easily and you don't have to go through months of feeling much worse.....whoosh...was that a flying pig?

    My friend Margaret is still very ill and getting worse by the day. She's tried everything that Dr. Wright has prescribed but she never picks up at all. I think she's trying Allicin Max.....(or something similar) at the moment. It's a liquid form of garlic but she's at the end of her tether just now.

    Surely there must be something that will get you sorted out and the sooner the better!

    Take care and good luck,
    Defor.