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Any Lyme-knowlegeable people? Could I have Lyme?

Discussion in 'Lyme Disease and Co-Infections' started by Ocean, Mar 24, 2012.

  1. Ocean

    Ocean Senior Member

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    Hi everyone,

    I've written on here numerous times about some more unusual symptoms I have to see if others may share them but in most cases no one did. Last night I googled those symptoms along with "Lyme Disease" and immediately started getting hits on Lyme forums. I don't know much or really anything about Lyme Disease and am not sure it really could make sense that I may have it. I wanted to see if anyone may have some insight, given my symptoms and history.

    The symptoms that I have that some with Lyme seemed to share but most on here did not:
    -Severe facial pain, kind of like a TMJ Pain and bone pain but in my jaw, cheekbones and nose. Usually as a PEM/crash symptom, not daily
    -Red and hot butterfly shaped flushing on face
    -Swollen face, especially upon waking
    -Daily fever
    -Severe muscle wasting not explained by inactivity

    A main reason I have been skeptical of if I may have Lyme is my history with being sick. I first got sick more than 10 years ago and after struggling for some years had years of remission, if not a full remission enough so that I was able to function basically normally. A few years ago symptoms returned and then got much much worse after severe overexertion about 1.5 years ago. Since then I've been very low functioning. Could Lyme have long remissions like that and have resurfaced after severe exertion the way CFS can?

    I also had previously ruled out Lyme because my PEM is so bad and obvious. I didn't think Lyme had that but now I read that you can have PEM with Lyme also.

    I did have one Lyme test done a few years back and it was negative. But I'm not sure how well it was carried out, I remember it having some specific instructions and the doctor's office seeming somewhat incompetent. And I think diagnosing Lyme is not always simple?

    If I do have Lyme, does it mean I have it in addition to CFS or instead of. You can have both right, but how would you be able to know? I do mean all the criteria for CFS and ME in all of the various definitions. Any insight? I don't remember a tick bite or bull's eye rash but I had a dog who got ticks t the time my sickness began.

    Thank you so much.
  2. Esther12

    Esther12 Senior Member

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    I've read bits and pieces on Lyme, but certainly wouldn't claim to be an expert.

    It can cause all sorts of symptoms, and trigger other problems... but there are lots of dodgy tests about, being targeted at people with lots of different problems which could be CFS-y. You can google lots of symptoms and "lyme disease" and get lots of hits, but I don't think that mean it's likely that those symptoms are caused by Lyme disease.

    This is further complicated by the fact that the standard Lyme tests aren't 100% either. So even if there's no good evidence that you do suffer from Lyme disease, no-one can say with certainty that you do not.

    You could talk to you doctor about being tested, but I'd only use tests which are widely respected, and not the 'alternative' ones floating about. There is also a danger that if you have a diagnosis of CFS and go to your talking of Lyme disease that they will roll their eyes - Lyme disease has become associated with quackery because of the spread of more dodgy testing.

    Good luck with everything.
  3. rlc

    rlc Senior Member

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    Hi ocean, Lyme is a possibility and should be properly tested for to rule it out just in case, its unlikely if you had a long remission, you need to double check that you have been tested properly as it needs a couple of tests to diagnose, these are ELISHA or ILA and Western Blot. These tests however are not very accurate and give a lot of false positives. There is a lot of information and tests for Lyme being promoted by various groups, which is considered dangerous and false by the medical community so be careful what you are reading, this article on the quack watch site explains the concerns expressed by the medical establishment http://www.quackwatch.com/01QuackeryRelatedTopics/lyme.html

    Have you been tested for lupus? Because you are saying you have a butterfly shaped rash which is a classic symptom of it. All the conditions that cause a butterfly rash are listed here http://en.diagnosispro.com/differential_diagnosis-for/lupus-like-butterfly-rash-face/33344-154.html

    How to diagnose lupus is explained here http://www.lupuscanada.org/english/living/1000faces_sle1.html

    All the best
  4. Rosanne

    Rosanne

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  5. Rosanne

    Rosanne

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    Sorry about that.. I`am new here.

    What I was trying to say is that it sounds like Lupus to me nore than Lyme.
    I too suffer with chronic facial pain as well as head pain. No definative dx.
    Yours does sound a bit like trigeminal neuralygia the way it hits the portion of your face as it does. You may have two seperate things going on.
    I have had a number of dx`s but personally I belive my problem is toxins.
    The nerves and possibly muscles also have been damaged by the toxins.
    Still working on ways to detox or chelate but until now no changes..
    I do hope you can find some answers. I often wonder how many diseases
    are in case caused by toxins.

    Wish you better days ahead.

    Rosanne
  6. Ocean

    Ocean Senior Member

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    Thanks everyone. I really don't want to have to consider Lyme or to possibly have it, largely because of what you all noted, that testing is uncertain and all that. It seems maybe even more confusing than CFS? Or maybe that's because I've spent the past year reading about CFS and know nothing about Lyme.

    Esther, All the hits I got for my symptoms were on Lyme forums, with people who supposedly have Lyme saying they share those symptoms, something I'm not getting here for those same symptoms. But I suppose it's possible those people may not actually have lyme, if testing and diagnosis is questionable. And obviously the symptoms could be caused by other things, though so far I've not gotten any good explanations from doctors or elsewhere.

    Ric, I've supposedly had lupus ruled out through basic rheumotalogical tests last year. Of the symptoms you linked to I only have the rash and maybe pleurisy, but it required 4 symptoms to diagnose lupus. Maybe if my doc retests some of my results will be different this time. I do have other lupus symptoms but not 4 of the main diagnostic ones listed.

    Rosanne, I don't think the pain I have is trigemninal neuralygia, based on the description of it I read. It's says "Very painful, sharp electric-like spasms that usually last a few seconds or minutes, but can become constant. Pain is usually only on one side of the face, often around the eye, cheek, and lower part of the face. Pain may be triggered by touch or sounds. Painful attacks of trigeminal neuralgia can be triggered by common, everyday activities, such as: Brushing teeth, Chewing, Drinking, Eating, Lightly touching the face, Shaving" Mine comes on from PEM, but not the activities listed. More exertion is required and it isn't brought on my face/jaw touch or activity. It doesn't feel like electric pain at all, more like my bones hurt or are being crushed, it's really hard to explain. It's thankfully not there all the time, usually only in a crash or after activity or not enough sleep.

    I'd like to not think about Lyme right now because honestly it sounds very confusing. I'm still just trying to soak in all the CFS stuff. I'll ask my doc about doing basic tests, I'm guessing he would know which are the reputable ones.

    Thanks all.
  7. Lala

    Lala Senior Member

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    I think it is highly probable you have lyme. The facial pain is very specific for lyme. And also it is very well possible to have years of remission and then sink again. Many people had experience with it. If I were you, I would let myself tested for large range of infections to see what is going on: lyme (western blot plus LTT plus CD57), chlamydia pneumoniae (serology plus LTT), bartonella henselae, bartonella quintana, babesia, ehrlichia, anaplasma, yersinia and more according to your specific symptoms- viruses, parasites, another bacteria.
    If you do the above mentioned triad of lyme tests, the probability of showing whether you have lyme or not, is very high. (I forgot the number, but you can search the web for Infectolab, they have more detailed info.)

    At least this is what I did and I have never regretted I paid for these tests as they revealed so much. I would be probably dead now if I did not investigate what is in game.
  8. Ocean

    Ocean Senior Member

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    So Lala, did you do these tests on your own without a doctor's orders? I'm seeing my doc soon so I want to bring this up to him. I don't know if he will know all these tests or agree to them. Can you do them without doctor's oders?

    When I look at Infecto Lab they have 4 tests under lyme and 6 under coinfections. Does that seem like it covers all the needed tests?
    http://www.infectolab.de/index.php?id=32&L=1

    Is that lab the only place to get the tests done through? I keep reading about Igenex?

    Thank you so much for the info and your opinion.
  9. soxfan

    soxfan Senior Member

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    I was diagnosed with CFS first for 2 years... though I felt as though my symptoms were Lyme. I never had a rash so that was immediately dismissed. I also had pets who brought in ticks all the time. One of my first symptoms was jaw pain on and off. My first real symptom was neuropathy pain in my feet and calf which started suddenly. Then I had a flu and after that the other symptoms started.
    I also have PEM and sleep disturbances. I was treated for a year and had a year remission before sliding backwards.

    I never tested positive for Lyme but had a very low CD57 and a high titer for Bartonella. If you live in the Northeast it is possible to have a co-infection and not Lyme as well.
    In my opinion none of the tests are very reliable but I think it all makes us feel better if we at least get tested. There are many different labs doing different testing so your best bet would be to go on the Lymenet sight and ask there. There are some very knowledgeable people on that site who are up to date on all the new tests.
    I really don't think I fit into either Lyme or CFS but I do have something infectious and maybe I will never know...
    I was tested at Igenex and had the Elisa also.
  10. floydguy

    floydguy Senior Member

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    I really wouldn't pay attention to the quackwatch guy. The biggest quack on that site is him. I'd also be wary of the same medical community that has given us the current definition of CFS. That being said the Lyme treatment protocol of massive amounts of anti-biotics should really be given a lot of thought - especially if you don't test positive on the accepted tests (and for heavens sakes don't rely on ELISA) or you have a weak immune system already.

    http://canlyme.com/quackwatch.html
    http://www.raysahelian.com/quackwatch.html
    Jarod likes this.
  11. rlc

    rlc Senior Member

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    Hi Ocean, would be a good idea to make sure that lupus has been properly ruled out, it can be tricky to diagnose and different people can have very different symptoms from it.

    Another possibility that seems to fit your symptoms is Dermatomyositis when I enter lupus like rash, muscle wasting and fever into diagnosis pro it comes up as the only possibility see http://en.diagnosispro.com/differen...fuse-fever/33344_24889_25261-154_154_154.html

    Fatigue, malaise and weight loss also fit see
    http://en.diagnosispro.com/differen...3927_25304_25244-154_154_154_154_154_154.html

    it can also cause lung and stomach problems so it would be worth getting a doctor to look into it, theres some info about it here http://www.mayoclinic.com/health/dermatomyositis/DS00335/DSECTION=symptoms

    And this page list symptoms of it you dont have to have all of them but it might help you see if it fits your condition http://en.diagnosispro.com/disease_...manifestations-dermatomyositis/12987-104.html

    The most common treatment for it is prednisone and I have noticed you saying you felt better when on prednisone.

    Havent seem jaw pain mentioned with it but it does cause joint pain and muscle weakness so maybe it is affecting the joints or muscles in your jaw??

    All the best
  12. Ocean

    Ocean Senior Member

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    Floydguy I'm still trying to figure out what the accepted tests are. I'm hoping what's listed on Igenex site is good enough. It's unfortunate that the tests are not necessary that reliable, since if I do actually have Lyme of course I'd want to try to treat it and it would be nice to have some certainty. This face pain especially is awful. I thought it was mainly a PEM symptom but I've had it in a milder version for some days now and it feels absolutely awful. I'm terrified of doing anything for fear of intensifying it. I wish I could describe the pain properly, it may help to identify what it's from. It's sort of like a bad headache in my face, sort of like tightness in my jaw joints but also spread to cheeks and bridge of nose. It feels like it's in bones.

    Ric, I really would love to know it's from Lupus or not. But do you think even if I don't meet the diagnositic criteria (that one site said you should have 4 out of 11 items on the list) I could have it? Thank you for remember that I did better on prednisone. I want to bring this up to my doctor again, I really went into a semi remission after prednisone and did not get worse again until I way overdid it on activity in a very serious way (before I had a CFS diagnosis and so didn't know about PEM, etc.). I'm not sure about the other conditions, I have had weight loss but also weight gain, coming out about even in the end. I don't see facial pain coming up as a symptom of Dermatomyositis but I will make a note to mention it to my doctor just in case. Thank you!
  13. LaurieL

    LaurieL Senior Member

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    Lyme Testing

    The only accepted testing for Lyme in the Lyme community is the Western Blot by Igenex. This particular lab has extensive experience in identifying Lyme, unmatched by any other lab out there, and to have this done by any other lab is a plain waste of your time and money. Additionally, the politics surrounding Lyme diagnosis and interpretation of testing has everything to do with previous published works by those in the IDSA as well as the initial vaccine created for Lyme. Incidently by some of the same people. Completely debunked, as the bands they found in vaccinated patients were no longer considered bands to identify Lyme. Again, disinformation and a big problem in interpretation.

    When this test is done, the patients are told by their regular doc that it is negative, even if they have positive bands in either the IgM or IgG, as most have less bands than the skewed criteria set by the IDSA and the CDC. There are also bands that are cross-reactive. Most docs if not LLMD, do not know these intricasies, and there for, cannot interpret these cross reactivities adequately despite their say so.

    Do not settle for your doc to tell you positive or negative. You must ask for the report from the lab. It will identify the bands you are positive for. If you choose to do Igenix on your own, then they will send you a report. If you go through your doctor, get a copy. Do not settle for his interpretation. I cannot make this point clear enough.

    If you go through your doc, insist on Igenex. Not Quest, not Lab Corp. They are improving over the years, but still not on the same par as Igenex. Send in a sample on monday or tuesday only. Do not send a sample on thrusday or friday. As the test will sit over the weekend, and possibly affect the sample to be tested by the inactivity and lack of proper processing of the sample when received, simply because it is a weekend. You will also read this on their website.

    I am familar with Lyme protocols. If I can be of any help, let me know. Lymenet.com is also an infinite source of information and support. I am sure they would be absolutely pleased to help you, as they did/do me.

    Laurie
  14. Ocean

    Ocean Senior Member

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    Laurie thank you so much for the clear info. I did have a test from that company before. It was some years back but I think it would be good to get the report from the doctor if they still have it. And I'll ask my current doctor to do a new one. Do you think I should ask for the coinfection tests and all that as well. If I get my results and the doc says they're ok, are you familiar enough with the test to look at my results if I PM them? I really appreciate your help. Thank you!
  15. floydguy

    floydguy Senior Member

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    IMO Laurie is making it sound more clear cut than it is. If one's lab report lights up like a Christmas Tree then that's one thing. However, many people end up with a few positive bands and several equivocals. Most LLMDs will continue on with their normal protocols in these situations. My Lyme Doc, a former President of ILADS, knew all the "right" protocols but I think it was more harmful than helpful for me - I had to stop when the Mepron was trashing my liver. Just my experience...
  16. LaurieL

    LaurieL Senior Member

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    I am sorry, I am not qualified to diagnose. I can help give you information or possibly some direction in where to find information, but cannot diagnose.

    I colored red what you wrote that worries me. In fact, again may I recommend you not take solely your docs word for it that you are either okay or not. You really must get a copy from the lab in which identifies the bands. There are certain bands highly indicative and only associated with Lyme. Others can be quite ambiguous. Others still cross reactive.

    Its the politics of Lyme diagnosis that skew this disease. Politics means conflict and the conflicts can be quite vicious, as witnessed by the stripping of licensures. It also elicits quite strong differences of opinion. Of which I didn't share my own opinion here. Which leads me to address...

    Many of us here have trouble with drugs and detoxifying, I am sorry you had the trashing of your liver.

    And I am not making it sound "easy" either, although I value your opinion. Its the politics that make this so hard for any of those entities to come together at all on this issue.

    There is also no disease that can be tested that has a clear cut diagnosis path by labwork. Only accepted SOC (Standard of Care) is the difference between those already established and those trying to get established. Think of CFS/ME as well. There is no SOC that is generally accepted by the medical establishment as a whole. What do we as a group here fight for? Its similar to what is also happening in the Lyme arena.

    As far as bands go, my comments above will help to further explain the politics of the bands and why the criteria, or number of bands required to be considered positive for Lyme by the IDSA and the CDC are not acceptable to the ILADs. But there is more...

    Some will not make the appropriate antibody response either and should also be a consideration.

    I was attempting to provide a clear cut base of information, instead of flooding Ocean with a bunch of information that would only confuse. With that base, it would be much easier to build with more information and learning. I wish it was clearer when I started on my path. I am not however trying to convey simplicity.

    And for the record. I do not have Lyme. I chose to do the treatments anyways due to a particular band I had. Turns out my problem is pathogenic klebsiella and e coli. E coli being one of the cross reactive entities to be considered. I am however an active member in the Lyme community despite.

    Laurie
  17. floydguy

    floydguy Senior Member

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    I guess all I am saying is that like with most things if you're hammer everything looks like a nail. ILADS doctors may treat endlessly to eliminate Lyme. Sometimes it's helpful and sometimes it's not. In those cases, where the immune system is already compromised I think people should recognize that the Lyme treatment protocol can be harsh and potentially cause more damage. I am certainly not telling me not to do it but just to be aware of the situation.

    re: politics - I am quite aware of the politics involved. One of the Lyme doctors I saw was literally chased out of the state by an Infectious Disease doctor. This doctor threatened her license and admitting privileges of the WHOLE practice at the local hospital. I was the only patient to see her the day after this happened. Poor woman was in tears and completely devastated.
  18. Esther12

    Esther12 Senior Member

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    I did a quick google on Igenex and their Lyme testing, and to me it looked as if their testing was not widely respected, but a bit alternative.

    My view on Lyme is that, if the claims made by more alternative Lyme practitioners were accurate, then they would have been able to produce compelling evidence of this under blinded conditions by now.

    When I first heard of the chronic-Lyme stuff, it sounded plausible, and I was interested to see what would come of it. I'm still waiting for credible research to be published here, and it doesn't look as if any is coming. Just proving the internal consistency of their testing, by doing something like the BWG or Lipkin studies for XMRV testing would be a massive breakthrough, and should be easily done if the testing were accurate - yet nothing like this has happened in over a decade of these tests being sold to patients. It seems dodgy to me.
  19. richvank

    richvank Senior Member

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    Hi, Ocean.

    I just want to note that there is a new Lyme culture test now available. I've been hearing promising things about it from Dr. Joe Burrascano. He is a consultant to the lab that developed the test, but does not get a commission on the testing. When they find spirochetes, they take photomicrographs of them, and they also use DNA analysis to determine if they are Borrelia or not. Culturing is considered a more reliable test, when positive, than antibody-based tests. I don't know what percentage of cases this new test misses. I think that's difficult to determine. You would need an independent way to know if the cases tested were actually positive, and if you had such a way, you wouldn't need another test. This test is described here:

    http://www.advanced-lab.com/spirochete.php

    Best regards,

    Rich
  20. Lala

    Lala Senior Member

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    Hi Ocean,

    I see you live in US, but I am in Europe. I do not know much about US labs, Infectolab is just considered to be the best in Europe. You can ask people on lymenet, which lab is good in US. To answer your question: I tested on all these infections with my immunologist, but some of these local tests were very unreliable, so I sent my blood abroad to do tests, which were not available here like LTTs. LTT is really good as it shows current activity of infection through cellular response. I fullfiled very long and large questionaire about my symptoms ( I think it was according to Burrascano) and according to my symptoms the Dr. chose the right tests for me. I think finding good doctor is a key issue.

    I do not buy argument, that testing is unreliable, so it is not neccessary to test. My tests revealed lots of info and on the this basis I got treatment, which helped. The more factors we know, the more recovery we can get. Of course, good doctor will take into account possibility of being falsely negative, too and can judge a lot from clinical symptoms alone. But if my tests tell me I am positive for lyme, bartonella etc., I am going to treat it!

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