The 12th Invest in ME Research Conference June, 2017, Part 2
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Compile the % of PWCFS/FM/etc. with Lyme

Discussion in 'Lyme Disease and Co-Infections' started by serg1942, Aug 24, 2014.

  1. serg1942

    serg1942 Senior Member

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    Hi everybody,

    I would like to compile as much information as possible about people with ME/CFS and/or other similar conditions, also positive (or negative) for Lyme and/or co-nfections.

    I think it is necessary to really confirm :

    1- The role of Lyme in ME/CFS

    2- The percentage of people with ME/CFS also positive for Lyme/co-infections. According to some doctors and laboratories it is about a 90% by the LTT test.

    I have opened in the CFS-research Spanish forum I run, a thread for this purpose. I would really appreciate if the ones of you tested for Lyme/co-infections by any test, could just write your diagnose and your tests results.

    This is the thread on my Spanish forum:

    http://www.sfc-em-investigacion.com/viewtopic.php?p=23496#p23496

    (On it, the above info is more elaborated and I have also explained how to post your data, provided you are a member. If you are not a member, just post here and I'll copy and paste the message, with the link)

    Thank you very much,
    Sergio

    PS- I will share the statistics here.
     
    Last edited: Aug 24, 2014
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  2. justy

    justy Donate Advocate Demonstrate

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    @serg1942 Hi - this is a good idea! do you want us to respond here, or over on the other site/forum? I have looked at the other, Spanish site, and I can't post there unless I join as a member.
     
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  3. serg1942

    serg1942 Senior Member

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    Hi @justy, sure! I tried to make it open for everybody but it is not possible. So yes, you can just post it here, and I will copy and paste your text with the link, ok?

    Thanks!
    Sergio
     
    Last edited: Aug 24, 2014
  4. serg1942

    serg1942 Senior Member

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    Ok. right now 5 out of 5 PWCFS positive for Lyme and or co-infections by different tests and laboratories (Of course most of us know tents and tents, but I want to be strict and have it written down in a post).

    I think it may be extremely useful to convey as many experiences as possible. I commit to get the statistics when the number of cases posted is high enough, to contrast the numbers some doctors and laboratories are already giving.

    Let me explain that this is even more useful for the Spanish community. Lyme is fairly known between the English speaking patients/doctors/relatives, but unfortunately it is barely known in the Spanish community, due mainly to the language barrier. So any help here would be most appreciated!

    So please, write your diagnoses here and I'll continue with this task of compiling data!:thumbsup:

    Best!
    Sergio
     
    Last edited: Aug 24, 2014
  5. Valentijn

    Valentijn Senior Member

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    I've tested positive for Lyme via Elispot-LTT, and I also have ICC/CCC ME with PEM.
     
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  6. justy

    justy Donate Advocate Demonstrate

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    I have a diagnosis of M.E I meet the CCC and ICC criteria. I was recently diagnosed with Bartonella Henselae (1/64 low titres IgG) By RED labs in Belgium. Chlamydia Pneumoniae Redlabs, serology positive IgG.

    Negative by Infectolab Germany Elispot LTT for Lyme (result was 1,1,1.) BUT my doctor thinks I DO have Lyme disease as he says my immune markers and clinical symptoms point to it, and the other infections I have are common co infections with Lyme. My immune system is not working well, and if I have Lyme it will have been for a pretty long time, so it may be hiding. He will re test at another point with 4 tubes, rather than 3.

    It would be great if you could post up a summary of what you find here as well as on the Spanish forum.

    All the best
    Justy.
     
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  7. serg1942

    serg1942 Senior Member

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  8. Valentijn

    Valentijn Senior Member

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  9. serg1942

    serg1942 Senior Member

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  10. serg1942

    serg1942 Senior Member

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    Oh!, for sure @justy , I will definitively share the statistics I find putting together the data gotten from both , the English and the Spanish speaking communities!

    I would like to have at least 100 reports to do it...

    Sergio
     
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  11. roxie60

    roxie60 Senior Member

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    I met the Canadian criteria for cfs. Also had receivec a fibromyalgia dx in 2012?. In my heart I did not feel those 'diagnosis' explained what was causing all the symptoms but after ten years I was desparate for a diagnosis that might give me some direction to regain my health, life.

    Since 2004 I had two ELISA tests that I wax told were negative so no further testing was done. Late 2013 my gp ordered a test I was not familiar with, CD57. I was shocked to find out it was a possible screen for lyme, see my gp was adamant that I could not possibly have lyme, something else must be causing my symptoms so I was confused why this test was ordered. I thought Lyme had been removed from the list of suspects.

    After years of blood tests being mostly normal, yet me being very ill, the Cd57 came back very low (55). That was enough for gp to approve western blot, so I researched and decided on Igenex. My Igenex came back 'negative' BUT as Igenex result put in large print, Negative does not mean Negative but gp just saw the word NEGATIVE. it would have been dropped again had I not pushed the issue and asked the gp to review my case with lyme literate doctor. Once gp reviewed test results, symptoms and treatment history GP changed opinion and agreed with llmd that there was a strong possibility of lyme. See even though my Igenex was CDC Negative I did have reaction to some lyme specific bands (3 INDs and a couple +s). That result plus my symps apparently enough for llmd to suspect lyme.

    I finally got in to see that lyme dr 3 months later and further testing was done for lyme and coinfections. At this time I only came back positive for anaplasma/erhlichia and mycoplasma. She also suspects bartonella and borellia but current tests are negative, llmd explained that may change to positive once my immune system starts working again.

    so positive for 2 TBI but getting treated for these and since there is overlap in same treatment used for lyme and bartonella getting treated for lyme and bart because same drugs used and she suspects based on symptoms.

    I have been in treatment now 4 months and I believe finally after ten years of misery I am seeing improvement in some symps. However the wax and wane experience I have had over the years makes me skeptical and need more time and continued improvement to be certain of the treatment and diagnosis. I just noticed this week a big improvement in my opinion. I had rashes that would flare up regularly on fingers, hands, elbows, chest, torso, legs, behind knees. Also had small wounds in same areas that would nsver completely heal. As of this week I noticed these wounds are healing. They are leaving bad scars, not surprised, but they are definitely healing. I always felt my skin issues were an indication on the condition of my immune system. I have also not seen the rash flare ups that were fairly regular for many years. I may need a few more months though to be certain that symptom is also improving.

    I still have othe symptoms but I feel slowly I am seeing some improvements with antibiotic treatment. My ibs has improved greatly( waterfall diarrhea everytime I ate, sorry if too much info but this was a debilitating symptom). The tingling, twitching, spasms have decreased. The pain has decreased. The internal vibrating has decreased. The heart palpitations and chest pressure sensation has decreased. I still get them, especially after exertion, but not constantly anymore. In spite of still having other symptoms I am finally encouraged that my health issues have been figured out.

    I hope this info can help someone else not have to suffer the losses I have for ten years. It is criminal what is being done to chronically ill people, yhe lack of awareness, testing and proper treatment for lyme and coinfections.

    Im now ecpecting to have continued improvement. Llmd thinks I could be about 80% functioning with 2 yrs of treatment. That will be an answer to prayer, I would be so happy with 80% functioning.

    I look forward to seeing the statistics you are gathering.
     
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  12. fibrodude84

    fibrodude84 Senior Member

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    Had bulls eye rash and lyme specific bands but not conclusive. Doctor thinks because of my autoimmune disease I'm not producing antibodies. So we aren't sure if I have lyme and whether to treat but most likely yes.
     
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  13. Sushi

    Sushi Moderation Resource Albuquerque

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    I am positive for Bartonella by PCR. My Igenex was equivocal and I was negative on the LTT--but I have low lymphocytes which may be a factor in getting a negative on the LTT.

    I meet both the Canadian and the International criteria. I have been treating Bartonella with antibiotics and Cowden herbals (under a lyme literate M.D.) for 4 months and have some nice, but slow, improvements.

    Sushi
     
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  14. serg1942

    serg1942 Senior Member

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  15. serg1942

    serg1942 Senior Member

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    Hi @fibrodude84, thank you for your message. I cannot add your info to the statistics as I need people diagnosed in the past with CFS (or another neuroimmune disease) and who also have been tested for Lyme and or co-infections... Do you fit this criteria?

    Best!
    Sergio
     
  16. serg1942

    serg1942 Senior Member

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  17. Sushi

    Sushi Moderation Resource Albuquerque

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    Hey, I can even read the short sentence in Spanish!

    Equivocal = ambivalent, unclear. In other words I had two ++ on band 41 but also know that I have been positive for C. Pneum which cross-reacts.

    Sushi
     
  18. serg1942

    serg1942 Senior Member

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    Yes, but, was it a wester blot IgG, IgM? and for what pathogen, borrelia I guess?
     
  19. roxie60

    roxie60 Senior Member

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    @serg1942 im trying to remember but did Rich VanK...suspect a relationship between lyme and CFS/ME? Do you recall his opionion?
     
  20. Sushi

    Sushi Moderation Resource Albuquerque

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    I had the full Borrelia and co-infections. I just looked more closely (the other post was based on faulty memory! :p) On IgM for Borrelia I had one + on band 41. On the IgG, band 31 was IND, band 39 was +, band 41 was +++, and bands 83 - 93 were IND.

    Whatcha think? A likely positive? Cowden herbals will hit both Bartonella and Borrelia though I am only being treated with abx for Bartonella.

    Sushi
     

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