Still sitting on the fence. :p

Discussion in 'Lyme Disease Archives' started by CelticLadee, Feb 16, 2010.

  1. CelticLadee

    CelticLadee New Member

    Hi again. Been awhile since I posted here. But after reading responses to Street129 on the FM board I have a question.

    Dr. B says something along the lines of that you can say you have LD if your WB results show 41 positive and positive one LD specific band. Right?

    My IgG showed:
    41+
    31 IND
    34 IND
    66 +
    Twice now my IgM showed the same result. LLMD repeated IgM after a month on Biaxin.
    41++
    39 IND

    So although I don't have a positive on a LD specific band I have what you say are a fingerprint on two LD specific bands. 34 & 39. What would you say the odds are that I do have LD? Clearly your opinion I know. ;)

    Bearing in mind I have multiple clinical signs and have been sick with them for 8 years.

    Bearing in mind that for sure I was bit by a tick in the early mid 70's. Engorged adult 8 hrs in my chest near my heart.

    Bearing in mind that we now live where deer live in our yard. (who knows while gardening and trimming trees if I did not get bit again)

    Bearing in mind that since my initial bite I have had increasing painful migraines, stiff fingers... over the years symptoms worsening. Crashed in 2002 after struggling a year after what seemed like a mild shingles rash on my right shoulder blade area. Nerve pain followed, right side chronic headache, fatigue and growing intolerance to sun exposure.

    2002 frequent bouts of high blood pressure, heart palpitations, daily low grade fevers, especially afternoons. Low temperature otherwise usually 96.8-97.8. Heart area pain, racing pulse, high BP and abnormal EKG at a doctor visit sent me into the hospital for a week of tests. Diagnosed with non-classic pericarditis. Had a squeaky heart for a few months & bed bound with fatigue. ie. Could not talk on the phone without losing my breath and heart pain. I could stay upright for an hour before I had to lay down for an hour. I teased my husband that I was his new human type yo-yo. I was up and down all day. Also could not sleep full night since. Snap awake to this day 2-4 times a night even with herbal sleep aids. Have never wanted to take the drugs.

    Out of the hospital symptoms increased and multiplied. Doctor said looks like FM. Other docs said looks like CFS. Been basically housebound since 2002 but during my good days can venture out and about to my expense later.

    Presently am having increase neck stiffiness then release with crunching, related headache, eye pain pressure, dry eyes, pain in scalp followed by swollen spot, then itch, then heals slowly leaving rough patch. Shoulder sockets have been flaring up for years before and now.

    Left foot numbness/pain over a year. Leg pain/burning/aching. Also arms at times. Left chest soreness increasing again. Fatty liver, gallbladder pain causing some of the shoulder pain. IBS chronically but not usually extreme unless on antibiotics which I am not for now. Taking a break. Some upper intestinal pain and/or spleen.

    Since being on the Wheldon protocol my energy was better. Might be decreasing now though. Not feeling as well as last summer. But not as sick as last year.

    I have had brain fog/puffy sensation. I am taking Lauricidin now and it has really helped that. Been working on bringing down yeast overgrowth I think maybe some viral issues too. Working on my gut health while deciding my next step.

    Not happy with the LLMD I had hired so am in the process of finding a different doctor.

    So I am sitting on the fence wondering if I really do have LD or just FM/CFS with Cpn. Or all of the above.

    Partly I am writing this so I can get a reality check. Maybe I am tired and in denial? Maybe I wonder if these tests and abx treatments are real. I don't know what to think today. Does that happen to anybody else?

    Sorry this is so long. I think I need to get my feet on the ground. ;) Maybe you can help me?
  2. Nanie46

    Nanie46 Moderator

    Hi,

    To answer your main question, I think the odds are very good that you have chronic Lyme.

    I am happy to hear that you are finding a new LLMD.

    If you go back and read your post, you really answered your own question.....

    A Lyme diagnosis is clinical...means it is based on history and symptoms. It can be supported by labwork, but it is not necessary.

    Take a look at what you report in your HISTORY:

    1. You had an attached engorged tick on you for 8 hrs.

    2. You live in an area where many deer live, which means many ticks also live there.

    3. You have spent time outside gardening and trimming trees.


    Take a look at your reported SYMPTOMS:

    1. After the initial bite you had increasing migraines and stiff fingers.

    2. Later you had nerve pain, chronic headaches, fatigue, many heart problems, low body temperature but daily low grade fevers, NECK STIFFNESS, eye pain, dry eyes, numbness/burning/aching/, chest soreness, shoulder pain, IBS, brain fog, gallblader pain, insomnia, etc. (they are all lyme and coinfection symptoms)

    Positive HISTORY + many Positive Symptoms = High probability of Lyme.

    Then factor in your IND results on some Lyme specific bands and that is a clue.

    Sometimes the sickest patients are not making antibodies. Sometimes they may have positive Lyme DNA tests, sometimes not.

    In my opinion it is just as important to find a good LLMD who will properly evaluate you for common coinfections like Babesia, Bartonella and Ehrlichia.

    Many people with chronic lyme were also infected by one or more of those tick-borne coinfections. The more infections you have, it is likely that you will have more symptoms and be more sick.

    It looks like you have already read at least part of Dr B's paper. Make sure you also read the coinfection info on pages 22-27...


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    Also read:

    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    Remember that Fibromyalgia and Chronic Fatigue Syndrome...when you break them down...are really symptoms of a larger (likely infectious) picture.

    Most people who have chronic lyme were previously given a diagnosis of FM or CFS (among others).

    Do yourself a big favor and follow up with a good LLMD on what seems very obvious.

    I wish you only the best.
  3. CelticLadee

    CelticLadee New Member

    I really want you to realize fully that your time and effort in writing such a comprehensive response is so very much appreciated. :) I did read the pages & pamphlet you suggested.

    Would you venture to say if I didn't have LD then those fingerprints - IND's - would not be there? Would there be any truth in that?

    I have a doctor in mind I have heard will work with patients, but is not a LLMD. This doctor does have Lyme patients and understands those of us labeled CFS/FM often have numerous infections to deal with so RX's CAP's. There are so few good LLMD's in the nation let alone a state not known for tick disease. The "good LLMD" I went to has only practiced several years and seemed opinionated in a bad way in my opinion. One thing I have learned is not to waste my time and money with insensitive doctors that act superior yet display ignorance in alarming ways. I want a team player not a false god. lol <wink>

    I tell you when I read the symptoms for Lyme Disease again I thought it seems to fit me. But honestly so many infection descriptions do as they are so alike. Anyway, not sure about the others. Maybe Bartonella? I have a few symptoms there. No red streaks though.

    The LLMD I went to did say that since I had been on Doxy, Azith with Tini pulses for about 6 months last year for C.pneumonia I didn't need to concern myself with the Cat Scratch Fever tick disease. The E. named one. I forgot how to spell it. Does that make sense in your opinion?

    Thanks again for your good thoughts. :)



  4. Nanie46

    Nanie46 Moderator

    I am not a LLMD, but from what I have read, I think you would not have those IND bands if you have not been exposed to the bacteria Borrelia burgdorferi (Lyme).

    I know many people are not close to a good LLMD which makes it tough.

    If you are going to try that Dr who has Lyme patients, print out Dr B's guidelines and take them with you.

    See if he will work with you to follow the guidelines to treat you with long term combination antibiotic therapy.

    Many Dr's do not treat aggressively enough. If they only use one antibiotic at a time or use low doses, it may be hard to recover.

    Many people test negative for Babesia, Bartonella etc, yet they have symptoms of it.

    The tests are not that accurate and there are species of babs and bart that there are not even tests for.

    LLMD's treat according to symptoms, not relying on a test to treat.

    Many people have babesia and do not get better on lyme treatment until they are finally treated aggressively for it.

    My babesia test was negative, but I did treat for it for awhile. I may or may not have to treat for it again later.

    Bartonella is cat scratch fever and can also be spread by ticks. Maybe you had enough doxy to kill Ehrlichia.

    You should know fairly quickly if that Dr is willing to work with you to follow ILADS guidelines.

    If not, you can find a LLMD at lymenet.org's Seeking a Doctor board.

    I hope you can get the help you need.
  5. jarjar

    jarjar New Member

    Are you aware that most LLMD's consider a IND as a positive? It is like a weak signal for that band.
    You have been given some good advice so no need for me to go into a lengthy response.

    With all the herxing you had with Sujay on the MP there is little doubt that you are dealing
    with a bacterial/lyme infection IMO.

    I seldom return over to this site but when I saw you post I wanted to throw my 2 cents in.
    Hope your Husband is doing better.

    Hugs
    J
  6. CelticLadee

    CelticLadee New Member

    I spent a lot of time yesterday reading about tick diseases again. Awful stuff!!! Too bad it is such a political issue too. Makes it more confusing.

    One important point I gleaned by reading about Bartonella is that it is "immune suppressive" so can mask the other diseases on your test results.

    (You may have mentioned it to me but somethings don't stick. LOL This time it did. :)

    Phew. I need a day off the PC to recoop. But first I wanted to let you both know how much I appreciate your opinions.

    For some reason it is so hard for me to face this. Probably because of my MP experience.

    But I really have no choice I am slowly beginning to realize. :p

    Being off antibiotics since Dec, the month of Biaxin, I can now feel myself relapsing I think.

    Well, at least my symptoms are worsening so that must be it I assume.

    The past two nights have been pretty bad with little sleep and widespread burning pain.

    Food intolerances are increasing too so I am losing ground there. Becoming more fatigued again.

    Thought it was the Lauricidin I am taking so I didn't take it yesterday. So far it hasn't changed anything. :(

    Hi & Thanks J. He is doing better but I am still concerned. He is having night sweats now more frequently.

    But he found an article stating many men do this as their body temp regulates. So requires lighter covers so don't overheat. So nothing to worry about. LOL Hmmmm.

    He had 41+ and 31 IND on his WB IgM (both times - before and after Biaxin).

    Also he had 41+++ and 31 IND on his WB IgG.

    So he has something going on too, but not sure what? 31 can cross react with viruses I read. The LLMD seemingly was doubtful he has LD.

    The circular shaped pale pink rash on his arm has disappeared. Wasn't a bullseye - nothing in the middle. The LLMD saw it when it was at it's palest before disappearing all together. He didn't seem impressed at all. LOL

    He has been taking Lauricidin also and has felt more energy. He works laborously daily so it isn't like he doesn't have energy normally.

    Just sometimes, something hits him and he comes home feeling like something the cat dragged in. His legs got weak after working very laboriously a few times too which worried me.

    He feels better taking the Lauricidin so I think he is fighting something or it would not make a difference me thinks. ;)

    He trims our tree hedges every year which are about 50-100 ft. long on each side on part of our property.

    Since we have deer roaming our property and sleeping in our yard many nights. Since we have racoons in those tree hedges judging by the droppings under them. Also flocks of birds nesting in them.

    I wonder if he didn't get bit by a tick and his immune system is struggling with a growing infection too.

    Hope you both are having a good day. :)
  7. Nanie46

    Nanie46 Moderator

    It sounds like your husband may have Babesia among other things.

    Night sweats are a big symptom.
  8. victoria

    victoria New Member

    even if you feel better after doing whatever protocol for a while... most LLMDs still feel you need to do something prophylactically to keep it in submission/remission.

    I hope you keep at it, I'd agree you have 'it' plus more... you know of course it's a clinical dx more than anything.

    all the best,
    Victoria

  9. jarjar

    jarjar New Member

    Everything you are posting is screaming Lyme for you and your husband. Night Sweats, tell me about it honey, my first couple of years I use to wake up with my upper legs drenched in sweat. I had lyme for a long time before it got so bad I had to leave my job. I hope both of you can find a good LLMD ASAP.

    Jay
  10. CelticLadee

    CelticLadee New Member

    Well, since our CDC & Igenex aren't positive, the MD I thought would help us, I found out today, will not. Deflated. :(

    Doctor did mention that the XMRV symptoms looks a lot like Lyme Disease and asked if I have been tested & then told me the only lab testing is RedLab in CA. That isn't right is it? I thought VIP DX is doing them via WPI. Plus have they got a perfected test yet? Plus some labs aren't doing it like the WPI does it. Plus even if a person has XMRV there is no treatment yet. I've been trying to read about it to keep on top of it. Especially when Dr. Mikovits made a comment if you have chronic Lyme Disease it could be because of XMRV. Wow!

    Oh my gosh. You all sound so extreme now. I mean after the LLMD and the MD speak as if we are unreal. You all make it sound like we have real problems. Thank you, I think. Ha ha ha. It is hard to take it serious when the doctors don't. Hope I didn't offend you with my cheeky humor. I'm just kidding around. Good to let off steam so not so much anger building. ;)

    Now I don't know what to do. Those two were my aces in the hole so to speak. What a joke.
    Well, I am in no mood to write a descent reply right now so I will try to get some sleep tonight and see what I can think of tomorrow.

    I will read about Babesia again. Thanks for mentioning it. Thanks for the support. Hugs all around.
  11. jarjar

    jarjar New Member

    Celtic just because you didn't test positive on the CDC and Igenex means nothing to a true LLMD. Go to the top pinned thread about lyme info and scroll down. You will see where Victoria posted more research. The guy in CT. is saying if you test positive for band 41 you have lyme period. Same with Dr. C if you faxed your results to him and told him your symptoms you would be told over the phone you needed to be treated for lyme. Dr. C's post on reading a western blot use to be on this site as well as lymenet. Not sure if they still are.

    Just not sure how much these dr.s you are going to are familiar with lyme or if they are avoiding taking on new patients due to harrasment. Would be nice if you could find a good LLMD in WA. on lymenet and see if you could fax him your results and explain him your symptom on the fax. Then have a nurse call you back if she thinks you need to be see the Dr.
  12. CelticLadee

    CelticLadee New Member

    I had not heard that before about band 41. Not a popular view no doubt. I looked and could not find where to read it in Victoria's research thread so gave up.

    I'll try again later... Hard to think clearly. My brain is puffed up again today among other pesky things. The big D arrived yesterday and continues today. ACK! But at least I did get some sleep last night. 12-4 and 5-8. Woo Hoo! :)

    Anyway, I have been using that thread to link to interesting Lyme info. So Victoria ... giving a shout out to you here ... Thank you so much! Good job lady! :)

    I'll go over to lymenet and see what I can dig up. I saw my two on the list giving to me before. But they don't seem to know a lot of things I thought they would know. I think they both are just learning. Have only done it a few years. They were the closest to me. May need to travel out further.

    Thanks again J for your support. It really helps to have your input. ~ Dee
  13. ChuckNBerkeley

    ChuckNBerkeley New Member

    " The guy in CT. is saying if you test positive for band 41 you have lyme period."

    I can provide a URL to a scientific paper which shows 43% of 320 normal people, ie not lyme, were positive, combined IgG & IgM, for band 41.
    and for other CelticLadee bands:
    band 31, 1.3%
    band 34, 2.5%
    band 39, 1.3%
    band 66, 13.1%

    I have other papers that show the same thing for band 41. Do you and your husband have lyme? Probably.

    Mine, not unlike yours, 7/29/09
    IgG
    34 IND
    39 IND
    41++
    IgM
    31 IND
    41+

    I started tetracycline and one hour later a red rash developed on my inner left ankle. 6 weeks later while thumbing through a diary I found an entry from 4 years earlier.

    "5-2-05 1.6 (miles) 1:00 (hours) TICK ON left ankle."

    Coincidence? Doubtful!

    Good luck
  14. jarjar

    jarjar New Member

    Here you go I copied and pasted it for you. I understand the confusion and being overwhelmed by it all.

    There was an article written at Science Line http://scienceline.org/2007/07/30/ask-webster-lymetests/

    The article is not very good, but the comments below by Kathleen M. Dickson are excellent: ---------

    This is false. (referring to info in the article at above website)

    There are far more false negatives, because even according to Allen Steere, only the people with Lyme arthritis will test positive, and that is a small percentage of the population.

    According to Allen Steere and the CT Ag Station, perform only a Western Blot (NEVER and ELISA), and if you have band 41 and no periodontal disease, syphilis, or obvious arthritis, you have Lyme Disease.

    This is why there is a controversy, and why the CT Attorney General is suing the Infectious Diseases Society of America- RESEARCH FRAUD.

    The following two reports by Allen Steere and Yale state that if a person has band 41 (or flagellin), Lyme symptoms, and they do not have severe periodontal disease or syphilis, they have Lyme borreliosis: http://www.pubmedcentral.nih.g.....obtype=pdf (sorry, my computer is freezing and I can't get the full pdf url so go to first link above & look at link in her comment)

    1) Allen Steere in 1986, when he developed the first CDC Method to diagnose Lyme, recommended: ” Perform serial Western Blots to look for changing and expanding IgM and IgG antibodies,” since Lyme is a borrelisis, a relapsing fever, and the changing antibodies is a reflection of the varying antigens- and that, THIS CHANGING phenomenon means β€œthe spirochete remains alive throughout the illness.”

    In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia.

    2) Yale and CT Agricultural experiment Station- the full pdf: http://www.pubmedcentral.nih.g.....id=8788993 (again, please refer to article at the 1st link as my computer's not being cooperative in downloading the pdf so i can get full url)

    Use of recombinant antigens of Borrelia burgdorferi in serologic tests for diagnosis of lyme borreliosis. Magnarelli LA, Fikrig E, Padula SJ, Anderson JF, Flavell RA. Department of Entomology, Connecticut Agricultural Experiment Station, New Haven 06504, USA.

    Recombinant antigens of outer surface proteins (Osps) OspA, OspB, OspC, OspE, and OspF of Borrelia burgdorferi sensu stricto and of p41-G, an antigenic region of flagellin of this spirochete, were tested with human sera in class-specific and polyvalent enzyme-linked immunosorbent assays (ELISAs).

    In analyses for immunoglobulin M (IgM) antibodies, 18 (85.7%) of 21 serum samples from persons who had been diagnosed as having Lyme borreliosis on the basis of the presence of erythema migrans reacted positively in ELISAs with one or more Osp antigens or the p41-G antigen. Eleven serum samples contained antibodies to OspC antigen, and of these, six also reacted to the p41-G antigen and to one or more of the other recombinant antigens.

    The remaining five serum samples reacted solely to OspC (n = 4) or to OspC plus OspA and OspE without reactivity to p41-G (n = 1). In analyses for IgG antibodies, seropositivity was comparable to that of IgM analyses and was marked by predominant reactivity to p41-G, OspC, and OspF. Similarly, all 21 serum samples were positive in polyvalent and class-specific ELISAs with whole-cell B. burgdorferi.

    Minor cross-reactivity was noted when sera from persons who had syphilis, periodontitis or other oral infections, or rheumatoid arthritis were tested with OspC, OspE, OspF, and p41-G. With relatively high degrees of specificity, ELISAs with recombinant antigens, particularly OspC and p41-G, can help to confirm B. burgdorferi infections. PMID: 8788993 [PubMed - indexed for MEDLINE]

    Kathleen M. Dickson ActionLyme.org Former Analytical Chemist for Pfizer


    [This Message was Edited on 02/19/2010]
  15. CelticLadee

    CelticLadee New Member

    You said, "I can provide a URL to a scientific paper which shows 43% of 320 normal people, ie not lyme, were positive, combined IgG & IgM, for band 41."

    So doesn't that mean that normal people can have a positive 41 in both IgG & IgM? Which disputes that the 41+ is a good sign of Lyme Disease.

    Yet the rest of your reply seems to say the opposite. Help me out here. ;)

    ~Dee
  16. CelticLadee

    CelticLadee New Member

    Interesting comments. I read through all of them below that article via your link.

    "Minor cross-reactivity was noted when sera from persons who had syphilis, periodontitis or other oral infections, or rheumatoid arthritis"

    My man has peridontitis and the other type arthritis so wonder if the 41+++ he had could be from that? That makes it more confusing.

    I sure do wish they had a better test. By the way, we also had the CD57 done. But I guess that isn't so reliable as it can fluxuate even in the hours of one day. The LLMD told me mine is abnormal but my man has a normal one. I don't get that as they were fairly close in number and above 100. Mine 120 at 5%. His 150 at 10%.

    I became so miserable tonight I couldn't take it anymore. I have some leftover Doxy so I took one and got instant relief. Eyes quit burning/aching so bad, head cleared a lot, finger & neck pain eased up. Pretty amazing stuff. ;)

    The LLMD had told me by now (since I used Doxy on the Wheldon Protocol for eight months) I was resistant to Doxy so I should go off it. Seems otherwise to me. Why do they say things like that. It just makes it seem like they don't know what they are talking about.

    I am so tired of running in circles and getting no where. Been chasing Lyme Disease since Sept. with no meds except the Biaxin in Dec. Talk, test and collect lots of money from us. Now we are suppose to go give him more money to tell us we need more tests. It's crazy cause in the meantime a person just gets sicker waiting to get the meds. Dangling the carrot. :p

    ~ Dee
  17. jarjar

    jarjar New Member

    What I should have said was that if you have lyme symptoms and test positive for band 41 it is presumed you have lyme by most in the lyme community. Yes healthy people can test positive for 41 but as always mentioned lyme is a clinical diagnosis. You have a history of a tick bite and symptoms plus positive for 41. Not to mention you tested positive and IND on other bands.

    From what I copied from above.
    In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia. [This Message was Edited on 02/20/2010]
  18. CelticLadee

    CelticLadee New Member

    Thanks for lining up my sights again. It always comes back to the clinical symptoms being the paramount issue. Tests are so fallible... only indicators. Got to keep that as my base thought. If only it would stay in place and quit floating away. LOL ;)

    Last night I found my saved list from Lymenet with names of LLMD's in my state. Was reading patient comments on a WebMed site about them. It is so hard to judge from the extremes in opinions. But the bottom line is they are worth looking into further. So am back in that process. At least my head is clearer this day so maybe I can accomplish something.

    Thanks again JJ.

  19. victoria

    victoria New Member

    good call CL/Dee!

    As we all know, no one protocol works for all of us...

    my feeling is that the idea of pulsing meds is the best overall as it gives your immune system time to recover.

    Keep us posted as to what you decide...

    all the best,
    Victoria
  20. ChuckNBerkeley

    ChuckNBerkeley New Member

    "Which disputes that the 41+ is a good sign of Lyme Disease. " It alone is weak.

    I have a spreadsheet with IGeneX data for 100 tests, from roughly 95 people, including you and your husband. There are virtually none that include just 41.

    Band, normals and a new last column, the percent positive for 186 lyme patients. Note how much lower the % positive for the "normals" is than for the "lyme". Note also the 81.2% for band 39. Which means that IGeneX 2 bands for a positive works quite fine because most people will be positive (I will assume INDs are positive) for both 41 and 39.

    band 31, 1.3% --- 31.4%
    band 34, 2.5% --- 14.5%
    band 39, 1.3% --- 81.2%
    band 41, 43.1% --- 87.1%
    band 66, 13.1% --- 55.9%