Is it Lyme or CFS??? Please Help

Discussion in 'Lyme Disease Archives' started by llelnino, Sep 1, 2008.

  1. llelnino

    llelnino New Member

    CFS or Lyme? Please Help

    I read many people with Lyme have pain or dullness in the ribcage, is this always the case?

    The reason why I ask is because I have just started seeing a LLMD for suspected Lyme and Co's but I dont have any ribcage pain or dullness. I dont have any pain. My main symptoms are

    Extreme Fatique(especially after exertion)
    Light headed
    Overly sensitive to Light, Sound and smell
    Multiple Chemical Sensitivities
    Loss of Appetite
    Loss of weight
    Loss of memory, words, concentration
    Very low Cortisol
    Hormones slightly low as well
    Slow reflexes
    Mood Changes
    muscle aches
    trouble staying asleep
    Stomach usually upset
    Hot Flashes
    Temperature Instability(especially in the hands and feet)

    This all started in Dec 06 with a severe bout of the flu that took me almost 2 months to recover from then I was fine for a year until getting another flu in March 08 where I continue to suffer all the above symptoms.

    In April one CFS doctor told me that I have CFS
    based on my symptoms and the fact that my EBV vca igg was 24 times above normal at 2411.

    I couldnt just lie down and accept the CFS diagnosis so I started researching. I've worked 2 summers outdoors reading electric meters(2000,2006) and I was always outdoors playing sports or doing something and I live in NJ(very Lyme endemic state) I started looking into Lyme.

    I had the Igenex WB test done and it was negative but I had IND and + reactions on 8 bands 4 on IGG, 4 on IGM and my CD-57 was 80, My LLMD thinks that this is very significant and believes that it is very probable that I have Lyme.

    My IgeneX WB results are


    **23-25 was IND
    **31 was IND
    **39 was IND

    **41 was +


    18 was ++
    **39 was IND
    **41 was +
    58 was +

    I quess I'm writing all this because I am panicking just looking at every little detail and symptom wishing I had all the Lyme symptoms so that I would be more sure that it is Lyme and not CFS.

    I just so scared that if it isnt Lyme that my life is over and that I would have to live like this for the rest of my life. I'm just so scared and wished I knew what was causing this one way or another.


  2. redhummingbird

    redhummingbird New Member

    Your test results along with your symptoms sound like lyme. Many people originally diagnosed with cfs really have lyme (some people have cfs with a viral component rather than lyme).

    There are many subtypes of cfs.

    Do you have an LLMD? If so I would bet they would treat you for lyme.

    Also, it's notable that all the activity on the bands are the ones consistant with lyme.

    I would also ask your LLMD about babesia.

    People with lyme don't always have rib pain.
    [This Message was Edited on 09/01/2008]
  3. victoria

    victoria New Member

    The 'L' word on the other board gets some upset, despite the huge overlap in symptoms and the number of people who were originally dx'd with CFIDS/FM and found they had Lyme and co-infections.

    The usual and more than likely co-infections will turn out to be as important to treat as Lyme, just harder (near impossible) to get reliable results for, however. This is where a good LLMD comes in handy who's had plenty of experience or willing to consult with those docs who have.

    Please don't give up, this is a difficult complex of diseases to treat... Take heart in that you have found a good doc ready to think about any/everything...

    And, realize that even the CDC does NOT require the 5 bands they require for tracking/surveillance purposes for an ACTUAL diagnosis of Lyme.

    Even the CDC says it is a CLINICAL diagnosis - ie, based on your presenting picture as a patient, so your diagnosis is NOT dependent on the results of a blood test.

    all the best,

  4. llelnino

    llelnino New Member

    I saw a LLMD for the 1st time 3 weeks ago. She said that my test results are very significant and that it is very probable that I have Lyme. She drew blood to test for the Co's and I will have the results back at my 2nd appt which is this thurs. I do have some symptoms that match with babesia but I have no rib pain or soreness.

    [This Message was Edited on 09/01/2008]
  5. llelnino

    llelnino New Member

    Based on my history and where I live I had to at least consider Lyme as a very real possible cause for my ill health. I cant just accept a CFS diagnosis and just be content with that. People dont just go from extremely active and healthy oneday to chronically ill the next without a good reason. Since I can no longer work or pretty much do much of anything anymore I'm making it my mission to find the root cause of my ill health one way or another. I am trying to get a viral panel done through Focus Labs(since my EBV showed 24 times above normal) who knows if it is active or just elevated due to possible Lyme infection. Thats what I tend to find out.

  6. mrdad

    mrdad New Member

    I see this CFS thingy all the time. NO one has been able yet,

    to tell me WHAT it is? I have Lyme, also I'm "Chronically

    Fatigued" all the time. I view CFS as a symptom rather than

    some ambiguous "disease". My CSF is most likely a resultant

    of my genetic blood disorder, Lyme and possibly some other

    yet unknown variables leading to being extremely tired all

    the time. Something causes IT, IT doesn't cause something


    Not all symptoms are present in All Lyme infected people.

    They may vary greatly. I have many, but certainly not most.

    Our bodies don't conform to a "Cookie Cutter" image. So

    Michael, you too may have many of the symptoms, but don't

    be "disappointed" if ya don't have them all. Ya know what

    I'm sayin?

    Hope you progress well and feel much better soon. Sounds as

    if you are on the right track!

    Best Wishes,
  7. llelnino

    llelnino New Member

    Yeah I've heard that the Co-Infection testing is just as bad as Lyme testing if not worse. I 1st tested Co's through Labcorp(Of course tthey were negative) then I just had mu LLMD test for Co's through Igenex(I hope something comes up there that confirms Lyme) The LLMD I go to comes very highly recommended from Lymenet as she has Lyme herself. As depressing as things are at times one thing that I will never do is give up. I have too many people counting on me so for them I am determined to get better. They are my motivation.

  8. llelnino

    llelnino New Member

    I hear what your saying. If you look at people who recover from CFS or at least get better they have found that there were different variables that were responsible for their fatiqued state. Its up to us to get to the root of the cause no matter how difficult that may be. So when did you get your Lyme Diagnosis? Did you test for Co-Infections? Have you been getting any treatment?

  9. mrdad

    mrdad New Member

    I was diagnosed this early part of the year. Didn't test

    for any Co-infections but will be doing that hopefully soon.

    I'd had a very bad case Mono in Grad School and suspect that

    that and some other virus(es) may be involved with my current

    problem. I understand that oft times it is thought that LYME

    may trigger long dormant and "forgotten" viral problems. I'd

    like to get checked for a number of possible virus issues as

    well as bacterial. I believe I contacted Lyme during my ten

    years in the Sierra. It has most likely lain dormant for

    many years after initial tick bite, rash and low grade nite

    fever. I suggest Micheal, that you read all that you can

    on the subject. I found that it is helping me greatly to

    understand the disease, it's background, and possible

    means of treatment. But most importantly,

    be your own advocate in pursuing your path to wellness!

    Welcome and keep us up to date with your progress.


  10. victoria

    victoria New Member

    did you delete your post from the CFIDS/FM board? hope not... it could've stayed, you were questioning your diagnosis... there's such a huge overlap.

    Just wanted to remention (since that post is gone) that my son had many symptoms that had nothing to do with pain to start with... that didn't develop til later.

    Remember Lyme is a spirochete like syphilis... which WAS the 'great masquerader'... now Lyme is, its genome is 2X as complex as syphilis... and all these stealth infections are just that, they hide out in our tissue cells and even our white blood cells, even form 'cysts' of biofilm to protect from abx.

    The lists of symptoms you'll read at different sites is just that...
    A LIST...

    Remember it reads like a 'laundry list' because how Lyme and the likely co-infections show up depends on what infections and your own genetic susceptibilities - so everyone is different.

    So you won't have every symptom that's possible, thankfully.

    all the best,

  11. llelnino

    llelnino New Member

    Yeah I deleted because I didnt want to upset anyone over there. Should I repost it? So do you think since your son has Lyme that most likely that is what you and your husband have as well? When did your son finally receive his Lyme diagnosis? Has your son been seeing any improvements? Is he seeing a LLMD?

  12. llelnino

    llelnino New Member

    Reading and doing research is pretty much all I do these days since I dont have much energy for anything. What scares me is that my case sounds alot like the typical CFS case, I caught a very bad flu that never went away(it was flu season as well) most people with lyme have a flulike illness as well but its usually in the spring or summer months. I dont see or read about people who were diagnosed with CFS then later confirmed to have Lyme that became sick in the flu season months and never got better. It sounds very CFSy to me which scares me.

  13. llelnino

    llelnino New Member

    Do you guys think that Lyme can lay dormant for years so that the person is asymptomatic and then some physical or mental stressor that temperary weakens the immune system allowing the Lyme to wake up?

    Also what do you guys think of very high virus titers? I have heard that many stay positive something like 80% of healthy people but only at a certain level. How does someone know if their very high IGG titers are active or just very high because their immune system is being compromised by something else for ex. Lyme an Co? I ask this because as you read my story you will see that my EBV levels were very high at 2411 this was the IGG vca. This and my symptoms was how a CFS doctor came to label me with CFS because he said that I have Chronic Epstein Barr.
  14. mrdad

    mrdad New Member

    Yes, I believe that in my case I contacted Lyme more than
    30 years ago in the Sierra. I previously was hospitalized
    with Mono and it took months to recover! I suspect that
    some factor may have awaken the dormant Lyme and possibly
    triggered the Fatigue symptoms asso. with Mono. This is
    all so speculative, and I'm not sure that present Medicine
    can really definitively explain most of our problems related
    to these maladies. But, one may host more than one illness!!

    Have you read anything about the "Yuppie Flue" outbreak in
    the '70's in Lake Tahoe? You may wish to research that par-
    ticular interesting study. It effected adults and children.

    Talk ta ya later, "K"?

    [This Message was Edited on 09/02/2008]
  15. victoria

    victoria New Member

    Lyme & co occurs in clusters... given that we lived on the same property in the country in Georgia for 21 years (moved right before my son was born) and the fact that we all went for walks in pastures/woods etc.......... I wouldn't doubt it. Just haven't spent the $$ on ourselves.

    I'm doing an experimental protocol - marshall protocol - you can read about in the library up above - tho I've been stalled on it several times due to other things getting in the way); it has given me some gains... I just want to finish.

    My DH has atypical Bells Palsy which could be due to HHV or Lyme... but was also dx'd with Reflex Sympathetic Dystrophy, a chronic pain condition. He has been doing some experimenting with MMS (see waynesrhythm's posts about it, I also posted on his posts), and has a rife machine in wait.

    And it is well known that Lyme & other stealth pathogens CAN lay in wait. Research has found people with no symptoms functioning fine... I think at least for some it can be opportunistic, while others are extremely genetically susceptible especially if also compromised with other infections. It seems like it affects everyone differently.

    My DH gets the worst test results on anything we do together (like heavy metals, the visual contrast sensitivity test, etc) and yet functions much better than me.

    As for me, I've had low-grade problems since I was 18 when I got mono for a year along with hepatitis A and meningitis (type associated with mono). But weirdly, a few weeks before I got sick, I'd gone camping in the Ozarks and had a tick on my back that I didn't even see til I got back home. So, who knows....

    Bacterial infections are only one thing to battle, the opportunistic virals are another - or it could happen vice-versa. It's hard to know, hard to put into remission.

    Yes my son has a LLMD since '05 when he got his dx; he did well for first 2 years, but past 8 months or so, I think he's backslid as he's tried to come off abx... not sure what we'll do next, still trying to get his sleep worked out as he gets atypical responses to most meds.

    And yes, imho you should've left it up as you were questioning about the overlap possibilities. Many people do question their diagnoses as they see many getting a confirmed dx of lyme when they were originally dx'd with CF or FM, but they wouldn't know about it or mycoplasma or anything unless others posted. It's how I found out about Lyme and dx'd my son when our internist was stumped... and how many others have finally gotten tested.

    But since it's gone and/but if you are still having questions about the overlaps, you definitely could repost. It isn't forbidden to talk about Lyme there in relation to CF/FM.

    However, as with the doctors, the "L" word often does start a lot of bickering, altho you can also get a lot of good info, so it's up to you. Please check out the post here about links for info about lyme, etc tho as well.

    all the best,
  16. Junegal

    Junegal New Member

    And sinking fast....

    I was diagnosed with CFS by a CFS doctor one year ago. I have high EBV, parvo and HHV6 numbers that haven't come down in a year.

    My friend saw the article in Self magazine and recommended I get tested for Lyme. My CFS doctor did the test and said yes, it looks like I have Lyme, too.

    I went to an LLMD (sounds like the same one you go to?) and she said she does think I have Lyme, but the root of my problems are CFS. That I definintely have CFS. I posted on the other Lyme board and got rather interesting responses (she doesn't want to take on a new patient, I should find a new doctor---though she came highly recommended on the site and by people personally. I didn't think much of the responses from the board because I didn't necessarily agree with them)

    My interpretation of what she said was that when you have EBV or other viruses + Lyme and and you don't treat them together, they play off one another. You can't just treat one without the other because you'll never win the battle. Now, that was *my* interpretation of how she explained it.

    So there I was, hoping that I'd go to a Lyme doctor and she'd say "bingo, we've definitely got Lyme here and I can turn this around" and instead she said I definintely have CFS and Lyme as well, but the Lyme wasn't my main problem. I tend to believe her and trust her on this one (despite the comments I received on the other board) because why would a Lyme doctor say CFS if she truly didn't believe someone was CFS.

    I really like the Lyme doctor and also my CFS doctor so I'll continue to see both of them and see where I end up from here.

    I'm kinda in the middle though, knowing I have both but not sure which one exactly is causing me all the problems I have.

    Hang in there.
    [This Message was Edited on 09/05/2008]