1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Lipkin Microbiome Crowdfunding Campaign Launches!
An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!
Discuss the article on the Forums.

17 years of a ME/CFS dx, and it is Lyme, Bartonella and Babesia not ME/CFS

Discussion in 'Lyme Disease and Co-Infections' started by katieann, Jul 8, 2011.

  1. katieann

    katieann

    Messages:
    57
    Likes:
    2
    colorado, US
    I was dx'd with ME/CFS for 17 years before finding out I had Lyme, Bartonella and Babesia last November. Since being on treatment for the last 7 months, my life is returning. I am getting my life back after 17 years. My passion now is to ask all of my ME/CFS friends to consider getting retested for Lyme Disease.

    Even if you had tests and they were negative (mine was three times from 1993-2004), and/or even if you cannot recall being bit by a tick, or think you cant have it because you don't live in a "Lyme" state. Lyme tick distribution in the US is growing past the old borders on the east coast. And there is evidence that Lyme can be gotten in other ways (See the page "First things first..." question #1 on the web site)

    The standard (CDC's of course) test given (the ELISA test) to test for Lyme is 50-59% wrong Always. You need to get a western blot test at a reputable Lyme lab to accurately test you. I can help you with this with resources on Push Pin Angels, and/or feel free to fb mail me.

    This is my story that starts when I first found out I was Lyme positive till this week. I pray you all consider getting re-tested. There is a page on the web site above entitled "first things first..." that describes the process of getting retested, and answers your immediate questions.

    Remember that Dr. Mikovits reported that of the ME/CFS patients she tested for XMRV, 40% had Lyme as well. And there are two other studies now reporting that so many ME/CFS sufferers are testing positive for Lyme. Please consider getting retested? Thank you for reading this!

    http://pushpinangels.blogspot.com/2011/07/reclamation.html


    :thumbsup:


    .? .? . .` ???.

    EDIT: The Shor study:

    "Patients with symptoms that are consistent with chronic fatigue syndrome should be
    seriously evaluated for the potential of chronic Lyme infection. Common features in both
    conditions include profound fatigue, sleep, and cognitive impairment, along with
    fibromyalgia and dysautonomias, In addition, if chronic Lyme is determined to be
    present, then evaluation for the potential of co-infections with Ehrlichia sennetsu,
    Bartonella henselae or Babesia microti should be undertaken. In doing so, we are more
    likely to effectively reverse the chronic, often debilitating processes with which our
    patients are so often presenting.

    http://www.cfids-cab.org/cfs-inform/Mycoplasma/shor07.pdf

    Also, his newest:

    http://www.iacfsme.org/BULLETINWINTER2011/Winter2011ShorCFSinLyme109123/tabid/458/Default.aspx
  2. hope love light

    hope love light

    Messages:
    40
    Likes:
    4
    East Coast, US
    Hi Katie,

    I'm gearing up for some viral testing hopefully on the 19th.
    I have heard that getting LYME tested at a Lab called Igenix is good, but costs around $500.
    What lab do you recommend?

    Also can I get the Bartonella and Babesia done at Quest Labs since insurance will at least cover that?

    Thanks for your input,
    Hope
  3. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, Katie.

    I very much want to endorse what you have said. I am aware of quite a few cases in which the person carried a CFS diagnosis for years, and only learned that they had Lyme disease after the pathogens had been able to dig in and cause a lot of misery. I have offered a hypothesis that Lyme disease can lead into ME/CFS for people who are genomically predisposed to developing a partial methylation cycle block. The link is that Borrelia have been found to deplete glutathione in their hosts, and glutathione depletion can lead to a partial methylation cycle block in those who are genomically predisposed.

    Best regards,

    Rich
  4. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,257
    Likes:
    1,626
    London
    Hi Katie,

    Lyme has been discussed a great deal on ME and CFS internet groups since they started. I've been able to follow the progress of many patients trying different protocols over those years.

    That's one of the reasons I have never bothered getting tested. I've learnt from these existing ME and CFS patients.

    The first problem is finding a test that is reliable. I've known people go from lab to lab to find a test and pay out a lot of money along the way.

    The second problem is finding a treatment that works. I've followed fellow patients and friends and friends as they struggle to find a doctor then struggle to cope with the different protocols. I've even tried a few of these myself to see if I can tolerate them or they make a difference.

    No luck so far.

    For me, it would be pointless.

    I'm XMRV+ and have had better luck with antiviral treatment than Lyme protocols. We are all different.

    Hope that it works more smoothly for you.
  5. Timaca

    Timaca Senior Member

    Messages:
    413
    Likes:
    69
    Hi Katieann~ I'm glad you are seeing improvements in your health! I hope you get all the way well. After much searching I was given a "probable" Lyme diagnosis....and put on IV rocephin. I improved greatly. Then I developed a fungal infection in the picc line, it was pulled, and 3 weeks later, all my symptoms came back and hit me like a freight train.

    It was then discovered that I have chronic viral infections too. I'm currently on antibiotics (for a likely Cpn infection) and antivirals.

    A helpful website is: http://chronicfatigue.stanford.edu/ (check out the infections tab).

    If treating the tick borne pathogens does not cure you consider testing for viral pathogens as well.

    Rich, I really should look into the glutathione depletion and methylation cycle block. Is there a link on this site you can direct me to for testing or other info? Thanks,

    Best, Timaca
  6. anciendaze

    anciendaze Senior Member

    Messages:
    821
    Likes:
    736
    There's a second way ME/CFS and Lyme may be connected, in addition to Rich's above. The virus infects several types of immune cells. Often it seems the initial infection doesn't do much until there is an independent challenge to the immune system. This allows the virus to gain ground while another pathogen takes the blame. What I've discussed with several people is that the infection doesn't move into macrophages until there is an immune challenge which requires them, bacterial infection. If this is true, treating the Lyme may be only outer layers of "peeling the onion". (Any such gain is worthwhile, even if you don't get to the bottom. Right now, a 20% improvement would be marvelous for me.)

    I've learned that people treated for Lyme often remain unusually vulnerable to reinfection, even after they test cleared of infection. This sounds like an underlying immune impairment. We know the envelope of the virus has a domain matching an immunosuppressive domain which has been demonstrated to have that effect in similar viruses in mice.

    By all means get yourself tested for treatable conditions with similar symptoms.
  7. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
  8. warriorseekspeace

    warriorseekspeace

    Messages:
    72
    Likes:
    46
    Florida
    Dear KatieAnn,
    I just got an order from my CFS doc for Lyme Western Blot (at my requeest, although I've had negatvie Lyme test in past). She wrote it for LabCorp, and my insurance should pay for it there as well. I would like to second HopeLoveLight's question about what lab you recommend for the Lyme Test. If it is really better, I will hold off and do it elsewhere, like Igenix.
    I have been ill over 22 years, and Ijust read last night, that chronic infections are the hardest to detect on tests, as the pathogen has moved from one form witha cell wall, to another form with no cell-wall.
    (My doc was sort of short with me, when I aksed f I needed to go somewhere special, due to false negatives, stating Labcorp should be fine, but she is just like that with sometimes, sort of impatient and bothered by all my "excessive" and "obsessive/compulsive" details; she is overwhelmed with too many of us to treat, I guess).
    By the way, have you heard of experimentation using disease-free ticks to as a new test?
    Thank you for posting, by the way.
    WaSP
  9. Wayne

    Wayne Senior Member

    Messages:
    2,174
    Likes:
    1,235
    Ashland, Oregon
    Lyme Disease and Rife Machine

    Hi Katie,

    Thanks much for your post, and your entertaining blog post. Its really very special to see somebody describe in words the regaining of some of their health, and what that means for them. Who but another person with ME/CFS could ever understand the exhilaration of feeling 20% functional?

    My story has many similarities to yours. I had tested negative for Lyme at least a couple times over the years. When I finally got a positive diagnosis (with numerous co-infections) in November of 2008, I wasnt even sure how to integrate it after so many years of a CFS diagnosis. My initial thinking was that I still had ME/CFS, but was now aware that I had one of those pesky co-infections.

    My limited reserves at the time did not give me an opportunity to delve into the world of Lyme in a meaningful way. What I did know was that most LLMDs use long-term antibiotics, that they could cause some very intense dieoffs and herx reactions, and that many who went the antibiotic route did well, but others did not. Antibiotics were also somewhat contraindicated because of my age (59 now).

    So I was pretty nervous about getting started on a treatment path without having a much better reserve of energy and knowledge than I did at the time. It was only this past spring that I began to feel I had the energy resources to delve into it, and try to figure out what my best approach might be.

    As I did so, I was amazed at how the symptoms of Lyme are nearly identical to those of ME/CFS. It began to give me hope that focusing on treating Lyme could be my key to better health. I was heartened by many of the success stories that are out there, just like yours. I noticed these success stories were a result of a wide array and combination of treatments, from antibiotics, to other more alternative ones, such as Rife machines, Salt C, etc.

    I eventually decided to go the route of using Rife machine frequencies. Bryan Rosner struggled with Lyme for many years, did not have good success with antibiotics, but eventually became completely well by using a Rife machine. His books provided a good roadmap for me to follow, and I made a big decision of spending $1800 for a Rife machine.

    When Antibiotics Fail - Lyme Disease and Rife Machine
    With Critical Evaluation of leading Alternative Therapies


    I only started in May, and was heartened when I started noticing some subtle shifts in the very first few days. My cognition was becoming slightly better. Because of this, I began to be able to think strategically and organize a little better. I began to be able to focus more on detoxification issues to address Lyme bacteria dieoff toxicity. My energy increased just enough to be able to do more FIR saunas and clay foot baths. I started taking lithium orotate and molybdenum to help with detoxification and brain protection, and I became much more disciplined with my methylation supplements, taking them on a daily basis. I had not been able to do the methylation supplements daily because the detoxification symptoms would become too intense. All of this combined turned out to be very helpful in dealing with herx reactions. It was a tremendous relief to me to feel that I could make meaningful progress without having to endure excruciating symptoms of neurotoxicity.

    In one of Bryans books, he mentioned that a person should start noticing within about 6 weeks or so that they are feeling much better for at least an hour here and there. I had gone about 8 weeks when I re-read that, and began to wonder whether it would happen for me. About the next week (only about a week ago), I had one of the best days I had in years. Not only did I manage to juice 25 lb. of carrots (and more), but I didnt feel like death warmed over after I was done. I had strong walks for about three days in a row about this same time.

    Im now feeling very hopeful about what may be in store for me as I continue to go forward. Lyme bacteria are very immuno-suppressive, and I think its quite possible that as I continue to clear out this bacteria, my immune system will come back online and be able to much better deal with other bacteria, viruses, fungi, etc. that my body is dealing with. I wish now I would have started sooner than I did, but am feeling very grateful that I'm at the junction I am right now.

    Im not trying to endorse any particular therapy with my post here today, but wanted to endorse (like Rich), what youve written and shared here today. I think it is soooo important that this Lyme issue be thoroughly considered by many on this board. Its not everybodys answer, but the statistics show that it is for many of us.

    Congratulations on your improvements, and thanks again for sharing. BTW, regarding those 70 lb. bales of hay you used to pick up in your youth. You did throw them over your head as well, right? ;):Retro smile:

    Best Regards, Wayne
  10. katieann

    katieann

    Messages:
    57
    Likes:
    2
    colorado, US
    IGeneX, Fry Labs or Labcorp. IGeneX has the best FDA accuracy rating, and a few Lyme labs use IGeneX to test for co-infections after a Lyme western blot has returned positive. I have not used Fry labs or Labcorp. They come from people I know who have used them.

    It is expensive, and if you do not have insurance, there can be help. Medicare covers this. And if you have Medicaid (They do not cover this), there is also orgs that can help.

    If you go with IGeneX, and your insurance pays for it, and your doc agress to it, I would get the complete lyme panel #6050 and teh complete co-infections panel # 5090

    IGeneX will send you a test kit free to your door.

    Please let me know if I can help!

    EDIT: Also, make sure to get a copy of any results. Some offices do not understand how to accurately interpret the results!

    EDIT: It doesn't matter where you have the blood pulled, but it does need to be sent to for example, IGeneX. If you go IGeneX, get the test kit sent to your home, and take it to your doctors office. Either nurses there, or Quest will pull the necessary blood for IGeneX. The tubes are included in the kit, as well as teh requisition form for you and your doctor to fill out. Also, the test kit needs to get to IGeneX in 24 hours (They include a fedex paid for container, so it's good to get this done on a Wednesday or thrusday morning at the latest.
  11. katieann

    katieann

    Messages:
    57
    Likes:
    2
    colorado, US
    So sorry you feel it's pointless. :( I too am XMRV positive. And all I can do is offer my own story of survival. IGeneX is the best rated FDA Lyme Lab in the US, and they will send you a test kit you can take into your doctor if you ever decide to test. Medicare covers it, but if you have no insurance and/or have medicad, then there is financial assistance.

    Bless your heart,

    ~ katie
  12. katieann

    katieann

    Messages:
    57
    Likes:
    2
    colorado, US
    Indeed! I ALSO want to get a rife machine, and have been researching it. There are a few out there, and I intend to build mine (My engineer side wants to play and I cannot afford to pay for one). I have seen Bryans videos. The rife machines are something I want to sue for long term, and actually, as soon as I can get my hands on one.

    Thanks for your response, and if you have any other rife information I should think about, please let me know?


    well DUH! =p ~giggle~
  13. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,257
    Likes:
    1,626
    London
    Thanks Katie, for the kind reply. I'm in the UK so we are not covered by any assistance programs and I am out of money.

    Good luck to you!
  14. katieann

    katieann

    Messages:
    57
    Likes:
    2
    colorado, US

    >< ARG! I really want all of you in teh UK to move here now..

    My 501c3 (Push Pin Angels) is to help those with No assistance, and that means in the UK as well, and IGeneX does send kits, to be used in the UK.

    I am hurrying as fast as I can to get this 501c3 up and running, so I can help you! In the meantime, go here to see what I envision and am working hard on:

    Push Pin Angels: Imagine
    GcMAF Australia likes this.
  15. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,257
    Likes:
    1,626
    London
    Katie,

    I would most respectfully argue that the money should be spent on research into what causes ME and CFS.

    I'd not want to see money that could be spent to benefit us all, spent instead on individual testing for patients of one particular niche diagnosis.

    It's certainly not something that I would donate to or ask other people to donate for me.
  16. soxfan

    soxfan Senior Member

    Messages:
    638
    Likes:
    194
    North Carolina
    I have been tested 3 times through Igenex lab. In my opinion they are the best lab for Lyme testing but I know many many people who come back with a test full of IND (Indetermenent) which raises more questions than answers. Some doctors as mine did don't put any value in an IND. It in no way means a slight positive as alot of people say. It means they are unsure. I only came up with a 41 positive and a whole bunch of IND (all Lyme specific bands).

    None of my doctors were ever able to say that I had Lyme...even one of the top doctors in NY. They treated me anyway since I had been having symptoms for over 2 years. After 30 months of treatment I have had ups and downs but now I am worse than ever. I now am testing positive for high titers to EBV and HHV6 where as before I never have....and I had been tested numerous times.
    Maybe I had Lyme and maybe I never did...it could have allowed the virus's to emerge and now that is what is causing my symptoms. I also feel Lyme is being overdiagnosed because it is a hot topic especially where I live.

    There are definately differences in some of the major symptoms of both illnesses. I also believe that people want hope that they can get well by taking abx where as with CFS there are no clear cut treatments. I was so hopeful when I was in treatment that I would get well and my life would return..now I have the diagnosis of CFS and I am not as hopeful that I will ever get well....

    Also I was just tested again for Lyme with the Elisa and it was a positive. The doctor then sent the blood to Imugen for confirmation and it was totally negative....I think it is kind of strange that after 7 years I finally had a positive test even if it was the Elisa....
  17. katieann

    katieann

    Messages:
    57
    Likes:
    2
    colorado, US
    If I hadn't had help getting the test and getting treatment, I would still be bed/chair/housebound. Not something worthwhile?

    If I can help one father, one mother to get well so they can provide for their family, not worthwhile?

    If one child can leave their room after years, and go back to school, not worthwhile?
    GcMAF Australia likes this.
  18. katieann

    katieann

    Messages:
    57
    Likes:
    2
    colorado, US
    Possibly, but if the test is true, and antibiotics save your life? It's not so over-diagnosed then imho. I am so sorry your having such problems. I wish I could help.

    Bless your heart.
  19. kday

    kday Senior Member

    Messages:
    259
    Likes:
    46
    As somebody with the amount of tick-borne infections as yourself, I strongly believe these conditions may be related. I have not tested positive for viruses, but virtually all markers and VO2 exercise test indicate CFS. I do not have reactivated viruses that I am aware of and I have not been exposed to EBV, but my sed rate was 1, I have low NK cells, no growth hormone, etc. Treating for non-existent viruses (I tried stuff for enteroviruses for example) does nothing.

    I strongly believe a subset has mostly viral infections, another subset has mostly bacterial infections, and another subset has both. It has bugs me how much attention viruses get from CFS doctors, with too little attention to bacterial infections. I think the opposite could be said about many Lyme doctors.

    But I'm glad you are doing better. I was in hell without antimicrobials and the local hospital called me a frequent flyer.
  20. Wayne

    Wayne Senior Member

    Messages:
    2,174
    Likes:
    1,235
    Ashland, Oregon
    Lyme - Spirochetal Bacteria

    Hi ukxmrv,

    I think I have to respectfully disagree with your characterization of Lyme as a "niche" diagnosis. I've seen some very high estimates (up to 40%-80%) of the number of certain doctors' CFS patient populations who end up testing positive for Lyme. It seems clear there's an association.

    Something else to consider is that the current understanding of spirochetal bacteria in general, such as Lyme, is still relatively unresearched with much to be learned. I learned recently that common oral spirochetes are showing up in the brains of people who had Alzheimers, in the hearts of people with heart disease, and in other organs of the body that are adversely affected. And yet we know virtually nothing about these oral spirochetes (except that they can migrate to all parts of our bodies) and how they can so adversely affect our health.

    Given the extraordinary similarities between Lyme and ME/CFS, I think completely avoiding researching this whole area would be a big disservice to the ME/CFS community, IMHO of course. ;)

    Best Regards, Wayne

See more popular forum discussions.

Share This Page