Cryptostrongylus Pulmoni anyone????????

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

  1. Defor

    Defor New Member

    Hi,
    Has anyone heard of the above? A friend has just been tested for this and she is waiting for the results.

    I've looked at the website:
    Melissa Kapron's Chronic Neuroimmune Disease.
    Info on CFS, FM, MCS, Lyme Disease, Thyroid and more!
    www.anapsid.org/cnd/diffdx/kaplow2.http

    It sounds as if they've now discovered a new parasite/round worm (oh yuk) and I wondered if anyone knew anything about it.

    Cheers,
    Defor.
  2. matthewson

    matthewson New Member

    Dr. Kaplow is the ONLY Dr. pushing this. Dr. Trevor Marshall of the Marshall protocol calls it rubbish. I don't have CFS, but I do work in Microbiology in a Lab, so this caught my attention.

    I wouldn't rush to treat for this parasite until I saw more Drs and more studies to support this.

    Take care, Sally
  3. Defor

    Defor New Member

    Hi Sally and Anchorholds,
    Thanks for your replies....

    I live in the UK and my friend is being treated by a private doctor in the UK who specialises in Lyme/Borrellia. He's just recently returned from America and attended a seminar to discuss C Pulmoni with other well known American doctors.

    He visited my friend at home and has taken some blood tests. It used to take ages for the results but now they've found a quicker way...which should only take about two weeks!

    I have just Googled for it and there's so much about it linking it to CFS...I daren't read it be honest! It's a bit pointless if there's no one to treat it in the UK yet.

    I've had CFS for over 25 years...(misdiagnosed for 12 years) and I'm sick and tired of feeling sick and tired. I've tried so many things over the years and spent a small fortune so I'm getting a bit (well a lot!) sceptical about the latest theory and the miracle cures.

    I do believe that one day there will be a breakthrough and the people who dismissed us as being hypochondriacs etc. will have to eat humble pie. I for one will be waiting with a ladle the size of a fork lift truck!!!

    Cheers,
    Defor.



  4. CAM57

    CAM57 New Member

    New Parasite Discovered In Some CFS Patients



    New Parasite Discovered In Some CFS Patients
    From Patricia Doyle labgal_5@yahoo.com 2- 15-2000


    Hello Jeff,

    I thought you might like to see the transcript of a CFS radio show that airs in New York over WEVD about the discovery of a new parasite found in some CFS patients.

    Patty

    CFS Radio Program 1-16-00
    Host: Roger G. Mazlen, M.D. Guest Dr. Larry Klapow, PhD

    Dr. Mazlen: To kick off the new millennium with a good show that you'll find of great interest and great importance, I'm talking today with Dr. Larry Klapow, a Ph.D. in Invertebrate Biology who's in Burlingame, California near San Francisco. Good morning Larry, welcome to our show.

    Dr. Klapow Good morning, Roger, I'm glad to be here.

    Dr. Mazlen Can you tell our audience something about the this suspected new parasite that you've found in a percentage of patients with Chronic Fatigue Syndrome? How'd you find it?

    Dr. Klapow Well, Roger, it came about as a result of a conversation I was having with an immunologist friend of mine, Dr. Vincent Marinkovich, here in Redwood City, California. He was treating a CFS patient we thought might have a roundworm infection. The patient had a low grade eosinophilia and some unusual rashes on the torso that suggested the possibility of threadworm disease. Antibody tests and stool tests were negative. I thought about this for a while and I know that some chronic parasites migrate between the digestive tract and the respiratory tract and some of them are coughed up in sputum. So I looked at the sputum and that's where I found it. I called the new parasite "Cryptostrongylus pulmoni", that's a provisional name and it means "the hidden lung worm".

    Dr. Mazlen That's pretty appropriate in terms of what you say.

    Dr. Klapow It definitely is, Roger. It's very difficult to find. And I hope other people will start looking for it. In fact, I've put together some material that I think can help them.

    Dr. Mazlen You recently completed a small blinded study in cooperation with a small number of CFS doctors including Dr. Anthony Komaroff in Harvard. You're now doing a larger blinded trial and you're also trying to develop a clinical test for the parasite. But for these other investigators and clinicians, can you tell us what does the parasite look like and how can they find it?

    Dr. Klapow You can identify the parasite, the female by its mouth parts and the male by its very intricate reproductive structure. This parasite is very small. The female is less than a millimeter long and the male is about a third that length. So, in addition to being small there's also a lot of difficulties. The specimens I usually pick up are naturally expelled in sputum and they're usually very decayed and rare and because of this you need very specialized imaging techniques to find them. They're not expensive techniques, they're just specialized. In any case I wanted to help people look for this parasite and so I put together a website which describes how to find it in great detail. It also includes anatomical drawings. I can give you the website address if you like.

    Dr. Mazlen Yes, give us the address right now, that'll be great.

    Dr. Klapow OK, I'll give you my own email address and then I can post the other rather longer address for people who contact me. My email address is lak123@gateway.net.

    Dr. Mazlen Now, this is really important because this introduces a whole new dimension about Chronic Fatigue Syndrome and its possible relationship to roundworm infestation. Can you tell us so far, at least, as you've been looking, what percentages of Chronic Fatigue Syndrome patients are turning out to be positive for this worm?

    Dr. Klapow Yes, I find the parasites in about 40% of three-day sputum samples from CFS patients. However, I have to tell you that yields are very low. In fact, they're so low that I think I'm probably missing as many positive patients as I'm finding. The problem here is that over 80% of the positives I get are represented by only one identifiable specimen. So just by chance it looks like I'm missing a fairly high percentage.

    Dr. Mazlen So, the prevalence can be a lot higher and this, of course, stirs some very great interest in terms of causation and etiology which we'll go into later. Can you tell us anything about the blinded trials so far?

    Dr. Klapow Yes, I did a small blinded trial in cooperation with a number of doctors including Dr. Anthony Komaroff at Harvard and here are the results. I think they're interesting but you judge for yourself. 5 of the 11 patients were positive while all 6 controls were negative. Now, it's a small trial but if you were trying to do as well by guessing, say by just tossing a coin, you'd only do as well as I report here in about 1 in a 100 tests, so it's a very hard thing to do by just guessing. The results of this small trial can be used to devise an experimental design for a large trial that could give a statistically significant result and going through that exercise suggests that between 50 and 80 samples will be needed. Now, it may take some time to process these samples microscopically. It's now taking me somewhere between 50 and 100 hours to find a single positive patient so I think the progress will be slow, that is unless we can get something more rapid going in the form of a PCR test.

    Dr. Mazlen Well, I certainly congratulate you though for the effort that you're making because this is totally important to patients for their prognosis and recovery ultimately. There's a lot more to learn and, of course, we're going to go into that and you mentioned the PCR test and that you have some arrangements whereby this can be developed and hopefully you'll get some funding to help this along soon. If anybody in the audience is interested in helping in this regard they can reach me at rgm1@aol.com which is my email address and I'll forward it on to Dr. Klapow. Larry where do you think these parasites might be coming from?

    Dr. Klapow Well, Roger, they have some specialized anatomical structures that suggest that they're related to parasites of animals that live in the jungles of Southeast Asia. In fact, there's been somewhat of a history of hard to diagnose parasites coming out of that area and being brought back to "Western" countries after periods of warfare. It happened in the Victorian era when French soldiers were returning from this area and brought back the chronic parasite Strongyloides stercoralis to Europe where it was first diagnosed in 1894. It also happened again in World War II. This time British soldiers became infected while they were imprisoned in Burma returned to England and 30 years later, in 1974 they were diagnosed with chronic parasites they had gotten while they were in prison. It's kind of a testament to how difficult some of these parasites are to find and treat. I would like to look at people who've been to Southeast Asia and I think I plan to do that as soon as I finish with the large trial I'm doing on CFS patients now.

    Dr. Mazlen It's a natural sequitur because you're going to be having a chance to look at all of the veterans of the Viet Nam era who either served in Viet Nam or Cambodia or neighboring areas. Dr. Klapow That will happen, I think, rather quickly if I can get the PCR test
    going.

    Dr. Klapow That will happen, I think, rather quickly if I can get the PCR test going.

    Dr. Mazlen You say it might be coming from this source and that's a possibility. How is it contracted? How do you get it then?

    Dr. Klapow I'm really not sure. What I can tell you is this. I've never seen a fresh transmissible stage of the parasite in any sputum sample I've seen so far. I've done a couple of hundred samples at this point. So I don't think there's any evidence right now of casual transmission. But roundworm parasites are typically acquired by eating contaminated food, but an outbreak of Cryptostrongylus infection, if it were transmitted in this way, would look very different then a typical food poisoning incident where people get sick within a couple of hours after eating.

    Dr. Mazlen That's due to the long latency that you mentioned.

    Dr. Klapow Cryptostrongylus is very small but it produces a larvae which is very large so there's an implication here that it must be reproducing very slowly and possibly has a very long latency time. Of course, we know that the outbreak of Chronic Fatigue Syndrome usually take place over several months and in some cases a couple of years and that I think would be consistent with the possibility of a food borne infection with a very long latency period.

    Dr. Mazlen Well, now we're going to turn to the clinical side. Most of the time that doctors are looking for parasitosis, they look to see elevated eosinophil and serum IgE, or immunoglobulin E, levels in patients. Isn't this usually the case?

    Dr. Klapow Yes, but that's the first question that I get from doctors when I tell them that I found what I think is a new species of roundworm parasite. Where's the elevated IgE? And the answer is elevated IgE is mainly apparent in acute roundworm infections. With time, the chronic parasites are able to suppress the IgE response and many of them produce a clinical picture where the patients either have normal or lower than the normal average level of IgE and, in fact, that's the picture you see in CFS and in all the studies I've reviewed, IgE is lower in CFS patients than in healthy control populations.

    Dr. Mazlen Here I want to interject that I'm part of the new study looking into C.pulmoni in CFS patients and one of the things that prompted me to call you and talk to you about getting involved is the fact that I had been seeing low IgE levels, low eosinophile counts in patients that I thought were inappropriate.

    Dr. Klapow In fact, there was a paper that's a few years old in the Journal of Chronic Fatigue Syndrome that indicates that if you correlate IgE and eosinophil levels with the number of symptoms the patients report, the sicker they are the lower the IgE and eosinophil counts and that's a statistically significant relationship.

    Dr. Mazlen And I see it and it seems to be borne out. Now, what do you think is suppressing IgE in this CFS or Chronic Fatigue Syndrome patients? What's the mechanism?

    Dr. Klapow Well, I think the mechanism may involve the cell marker CD23 which suppresses IgE. There are a couple of other things that activate CD23, the IgE suppresser and those are active herpes viruses and some of the TH1 cytokines, particularly interferon-gamma and the 2'-5'A, the activator of the latent RNase enzyme. Both herpes viruses and 2'-5'A, as you know, are highly elevated in CFS patients. In fact, it looks like some roundworms may be using chronic viruses as cofactors to help perpetuate their own survival.

    Dr. Mazlen That certainly rings true from what I've seen clinically and that leads us to another question. If a lot of Chronic Fatigue Syndrome patients have allergies, they should have elevated IgE levels but a lot of them, as we were just saying, don't. It seems to fit the model you propose of a suppresser.

    Dr. Klapow Yes, there are some doctors, in fact, that think allergy is a risk factor for getting a roundworm infection and that's because patients who tend to produce too much IgE to non-specific stimuli, harmless things, may not have enough reserves left over to fight off the parasites so they get a foothold, and in fact, initially, you can even see patients who report increased allergies, but later on when they're diagnosed with CFS and the presumptive parasite, if we may go so far and speculate, has suppressed their IgE response and the values come out clinically low.

    Dr. Mazlen Now, this brings us to a leading question, which, obviously is a speculation, but that's all right because that's what this show is about. We want to raise issues and have other people contribute to answering them as well. There seem to be many infectious agents that have been proposed as being possible etiological agents for Chronic Fatigue Syndrome. None of them have held up specifically as a single causative agent. What do you think about this roundworm infection, c.pulmoni, is it a primary infection or is it just another opportunistic organism?

    Dr. Klapow Well, I don't know if it's a primary cause of CFS. We'll just have to have to go through the rules of Koch's postulates and see how far we can get. I think it's an interesting candidate for a possible primary agent. I don't think it's an opportunistic infection. Opportunistic infections are usually airborne and are present everywhere. They're just waiting for our immune systems to be weakened before they establish a chronic infection. Cryptostrongylus doesn't seem to be ubiquitous. If I'm right about the taxonomy, it looks like it's coming out of a particular geographic area. They're are also a number of things that I think can connect roundworm infection to the major physiological systems that malfunction in CFS. And they have to do with the wide variety of physiologically active agents roundworms are able to secrete.

    Dr. Mazlen We're going back now and talking about the hormones that these roundworms secrete, namely vasoactive intestinal polypeptide, which is known as VIP, and hippocampal cholinergic neurostimulatory peptide which is known as HCNP, and what they do and Larry, what do these hormones cause? What do they do?

    Dr. Klapow Well, VIP is involved in regulating blood pressure and blood flow. It's important in regulating blood flow to the brain. It's believed to be implicated in orthostatic intolerance from which a number of CFS patients suffer. And, it also controls hypothalmic CRH, a hormone that's ultimately responsible for the level of cortisol in the blood which is suppressed in CFS
    and it's also suppressed in chronic roundworm infections. And the other one, HCNP, is a limbic system neuropeptide and it's believed to be involved in memory and immune function. When it goes wrong in areas that have Alzheimer's lesions, there are cognitive symptoms. In fact, some doctors have suggested that CFS looks in some respects like a reversible form of Alzheimer's.

    Dr. Mazlen It seems like that sometimes.


    Dr. Klapow Well, the bad news is that it bares any resemblance to that disease. *What good news there is, is that the cognitive symptoms come and go, without apparently doing permanent damage. I think it is a reasonable hope that increasingly effective treatments for CFS will be found in time to substantially help most of those who now suffer from this difficult and often misunderstood disease.

    *Added to transcript by Dr. Klapow after the show.

    Transcribed by

    Carolyn Viviani carolynv@inx.net

    Permission is given to repost, copy and distribute this transcript as long as
    my name is not removed from it.

    © 2000 Roger G. Mazlen, M.D.

    Thought you might like to read this.
  5. Defor

    Defor New Member

    Hi,
    Thank you for all the replies.

    My friend, Margaret has the results...it's POSITIVE for CP.
    Her doctor uses a special live blood screening machine to test for Borrellia.

    Her symptoms are all the usual for ME and FM, Vascilitus, severe, constant pain, widespread inflammation, dilated blood vessels, easy bruising etc.
    She is now completely bedbound and has been ill since she was 14...she is now 60.

    I will let you know more when my one flickering brain cell wakes up.

    Take care,
    Cheers.
    Defor


  6. zoster

    zoster New Member

    Hi Defor - thanks for mentioning your friends test.

    I think I know which UK Lyme Doctor you are talking about and I am really interested in this. I read about the CP worm a little while ago and wondered how the research was going.

    I didn't realise you could get tested for this, I'm guessing it is a new test, do you know any more about it?

    Please it would be great if you might be able to keep us posted on your friend and how she is doing. Do you know how much the testing cost? Did she test positive for Lyme also? Wonder if this worm could be tick transmitted and so a Lyme co-infection?

    Very best wishes
    Z

  7. Defor

    Defor New Member

    Thanks for your reply.....I'm also very interested in this too. I'll keep you posted and will let you know how Margaret is getting on. We've never actually met but we are in regular contact by phone.

    It might sound silly but she's delighted that 'something' has shown up at last. Yes, she did test postive for borrellia with the same doctor but nothing he gave her made her any better, in fact she was getting worse. She'll have to wait a week to find out what the treatment is so I'll let you know.

    It is a new test here in the UK and it costs £60.00. It can be done by post. They send you three slides to put a drop of blood on...it's a bit like the borrellia test.

    I 'Googled' for info and there was a lot of information about it from various doctors in the USA.

    I didn't stay on for long though because it showed a picture of it and it had an eye and it seemed to be looking right at me...oh yuk!

    I think it said that it was a lung round worm but I'll go back and check. I'm hoping to send for the test kit 'asap'.


    Kind regards,
    Defor.














    [This Message was Edited on 01/29/2008]
  8. zoster

    zoster New Member

    I did a bit of a search but couldn't find much, this is so interesting. I have heard about some taking Ivermectin to kill worms but it is a harsh drug I think. I rekon you'd need to be pretty sure you had them to go with it. I wonder if that is what your friend will try?

    So they can be seen in the blood? May be worth going for, I think I know the doctor you mean, he tests for Lyme the same way.

    Could you possible post links to the info and pictures you found online?

    Best wishes
    Z

  9. acer2000

    acer2000 New Member

    if its a lung worm does it show up on chest x-ray or ct scan?
  10. zoster

    zoster New Member

    Here's the site I found about the worm.

    http://www.members.tripod.com/lak123/
  11. Defor

    Defor New Member

    Thanks once again for your replies....I'm finding out about this bit by bit!

    Zoster...I've never heard of that drug but I'll find out what treatment this doctor advocates next week.

    I'm sorry but I'm not to hot on my computer and I don't know how to send pictures yet.
    I'll try to find that webpage and make a note of the address and pass it on to you.

    Rosenb10. I don't think they'd show up on a chest X ray or an MRI scan as they are almost microscopic. I've had lots of chest X rays and they were all 'perfectly normal'.

    Margaret said that the female is twice as big as the male and they are different colours...one is red the other blue and they look like tiny threads of lint.

    Kind regards,
    Defor. -X-



  12. Defor

    Defor New Member

    Thank you for the article....it's very interesting and so kind of you to go to all that trouble.

    I'll send it to my friend....she'll be so grateful.

    Cheers and best wishes,
    Defor.
  13. jo007

    jo007 New Member

    Hello Defor and others,

    I'm being treated by this UK doctor too. Did my DIY bloods today and sent them off.

    I know that the treatment protocol is just about ready and that a couple of research papers are being submitted by my doc and afew others. My doc met up with Dr Klapow in the states last month.

    The worm is likely to have come from south east asia back in the 1970's...maybe earlier, apparently.

    Does anyone get lower back pain (coccyx area??) - this parasite may infect this area, as a base. I am interested if this is a true symptom of a crypto infection....so far I think it maybe.

    All good wishes,

    Jo
  14. jo007

    jo007 New Member

    Hi Defor and others,

    I've now tested positive for cryptostrongylus and borrelia.

    Trying the learn more about the nematode. There's very little info online about it.

    I'd get a second opinion if I thought any other doctors in the world were testing for it, but I'm not aware of any that are.

    Got the protocol. Good luck to your friend. Lets hope it works.

    Jo
  15. Webbie

    Webbie New Member

    Hi Folks,

    I am presently taking a 15 day course of Ivermectin (Stromectol) for the treatment of Chronic Fatigue. I think I am being treated by the same Doctor in England as Jo, and Defor's friend Margaret. He has tested my blood and found evidence of Borrelia and Cryptostrongylus Pulmoni.

    It has been very interesting to read this thread. Many thanks to everyone who has taken the time to contribute.

    I'll let you all know if I gain any benefit from the Ivermectin. Hope it helps Jo and Margaret.

    Warm regards, Webbie
    [This Message was Edited on 03/28/2008]
    [This Message was Edited on 03/29/2008]
  16. rooftile

    rooftile New Member

    Hi to everyone interested in this thread
    Defor's friend Margaret is my wife. I spend 15 hours a day minimum looking after her as she is in severe pain, bedridden and helpless. She has just completed the first 12 doses of ivermectin with no discernable change. Start the abx cocktail tomorrow. She has been ill for a long time so I don't expect overnight improvements. Get rid of the bugs and give the body a chance to recover, could be a long time in our case.
    The pain is everywhere, she can't bear to be touched. It is particularly bad in her feet and lower legs so she can't stand without support. So we have gone back to the morphine patches to try to get some relief.
    Anyone else out there with such pain?
  17. Webbie

    Webbie New Member

    Hi Anchorholds,

    I have been on holiday to Thialand. My doctor says I probably picked the worm up from a mosquito or tick bite.

    To Margaret and her hubby,

    I was very sad to read about your situation. I do hope the present treatment Margaret is receiving will bring improvement to her condition and make things easier for you both.

    With love, Webbie
  18. Webbie

    Webbie New Member

    Hi All,

    I thought it would be good to let you know how I’ve been getting on since taking a course of Ivermectin. I finished taking the tablets nearly 7 weeks ago. Initially, there were some occasional glimpses of improvement. Unfortunately though, when I came off the tablets, my personal circumstances dictated that I needed to do more than usual. As a result, I had to take some time to recover from these exertions before I could see wether or not I could make comfortable increases in my activity levels.

    I am now starting to notice some improvement in my ability to recover from any exertion, as well as being able to do a little bit more walking about the house. The most noticeable change, is the fact that I have been well enough to increase the amount of time I spend working at the computer. On average, I have been able to increase the time I spend at my PC by 30% in May, compared with March this year. The last time I was able to do as much on computer was nearly 2 years ago ! (Pain usually limits what I do on the PC, fatigue usually limits what I do on my feet).

    Earlier this year, during a telephone consultation with the specialist doctor who is treating me, I mentioned that I was experiencing some muscle twitches. He described them as a ‘fluttering under the skin’ and suggested they may be a sign that the worm (Cryptostrogylus Pulmoni)is being released throughout my body. Well, I have been getting a twitch every day or so since finishing the course of Ivermectin, so I don’t know if this means that the worm is still in my system. Maybe I still need more treatment ? Will give it to the end of the month and then will contact doctor by e-mail to see what he would suggest as the next step.

    I would be interested to know how anyone else has responded to Ivermectin, and what advice they have had subsequently from their doctor.

    PS In reply to Polvani, I have no connection to organic farming.

    Warm regards, Webbie.

    [This Message was Edited on 05/22/2008]
    [This Message was Edited on 05/23/2008]
  19. petechan

    petechan New Member

    Hi,

    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

    Pete
  20. Defor

    Defor New Member

    The British doctor is called Dr. Andrew Wright. He practices in Bolton, Lancs.

    Rooftile's wife and others are being treated by him so I'm sure that they can give more details once they log on.

    Good luck.....
    Cheers,
    Defor