posted
Hello all, was wondering if you could give me a little expertise as well.. This thought has also made me ponder as to if I am postive or false pos. I was sick one year prior to all this with a postive EBV in 98 and went through mono..half a year later I fell Chronically ill.. Any feedback would be greatly appreciated..I have been sick for 7 years this May and was tested for Lyme again in 7-20-05 through Igenex WB..I was originally dx'd with CFS at Mayo Clinic in 99' due to a elevated protein level in my spinal fluid..I have been to 2 of the best CFS dr's in the Nation and neither did to much for me. One in Ashville, NC. and one in Incline Village, NV. I am currently taking a beta interferon for my immune system through my CFS doc. and have seen improvements in my test results, but none to my symptoms..I was dx'd from a LLMD out here about 3 months ago, but I still feel like I need your input..I never had a bullseye rash that I can remember but had been bitten by several ticks, mostly dog ticks..I will list my Igenex lab results and would love your feedback..I live in Nebraska, which is not a endemic area, but Iowa and Minnesota aren't that far away and they are..My doc is good, he is young but his father owns Igenex so i would think that he knows what he is doing..Thanks again for any input..I have been on Omnicef 1200mgs a day and 1000 mgs of probenecid along with Nystatin and probiotoics for about 3 months now..The first 2.5 were hell, extreme fatigue, even worse cognitive problems, extreme muscle twitching and shooting pains in my legs, night sweats and pains in my teeth.. and now I feel abit better, not sure if the meds were making me sick or if I went through a really bad HERX. Whatever it was wasnt fun at all..
IGG WB Igenex Negative 30 IND 31 IND 39 IND 41 ++ 58 IND The rest are all NEG.
IGM WB Igenex Postive through Igenex and CDC but this is 6 years after I became ill. So from what I read they would throw this out. 18 ++ 30 IND 31 IND 39 + 41 ++ 58 IND 66 + 93 + Rest are Neg. Thanks, Clay
Posts: 9 | From Nebraska | Registered: Jun 2006
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi Clay. I am sorry you have been so sick.
Were you tested for the co-infections ticks can transmit--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? Are you seeing a doctor in CA?
It sounds like you were herxing from the meds. It is good that you are seeing a Lyme doctor for treatment.
Regarding the Western Blot, although the CDC requires a large number of bands to show for it to be considered positive, many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme. Below is a breakdown of the Western Blot:
9 cross-reactive for Borrellia 12 specific for Bb 18 unknown 20 cross-reactive for Borrellia 21 unknown 22 specific for Bb, probably really the 23/25 band 23-25 outer surface protein C (OspC), specific for Bb 28 unknown 30 unknown; probably an outer surface protein; common in European and one California strain 31 outer surface protein A (OspA), specific for Bb 34 outer surface protein B (OspB); specific for Bb 35 specific for Bb 37 specific for Bb 38 cross-reactive for Bb 39 is a major protein of Bb flagellin; specific for Bb 41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia 45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis) 50 cross-reactive for all Borrellia 55 cross-reactive for all Borrellia 57 cross-reactive for all Borrellia 58 unknown but may be a heat-shock Bb protein 60 cross reactive for all Borrellia 66 cross-reactive for all Borrelia, common in all bacteria 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane 93 unknown, probably the same protein in band 83, just migrates differently in some patients
Although a bullseye rash is a definite sign of Lyme disease, only about 50% of people who have Lyme ever get a rash.
It can take time to recover from Lyme and it is normal to feel worse before feeling better. it sounds to me like you are on the right track.
Hang in there okay?
Posts: 4681 | Registered: Oct 2000
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1)You have had a response to antibiotics -- most likely an extreme herx -- this is a sign of an infectious illness -- not a virus. Most likely Lyme, but it could be something else. Normally if you take antibiotics and do not need them all that will happen is that you get diarrhea and maybe an upset stomach.
2) Elevated protein in your spinal fluid -- was EBV identified in CSF? LLMD neuro gave this as one of the reasons he felt hubby had Lyme disease (Lyme was not found in CSF)
3) Are you still taking beta-interferon? Does LLMD know this? Somewhat controversial to be taking this with antibiotics.
4) You know you were bitten by a tick. No one knows with absolute certainty in my opinion what diseases each of the different tick species carry. In fact, I am pretty sure a tick could have given you EBV or that weakened your immune system so Lyme and coinfections were activated. One of my own theories is that people with stronger immune systems are the ones who get the rash.
5) Hubby has only ever had band 41 show up once on numerous Western Blots from numerous labs. However he was really lucky and did get a posiitve PCR once for Lyme. In my opinion, based on your tests, your history of tick exposure, your symptoms and your response to antibiotics I think you have Lyme and possibly coinfections.
Good luck with your treatment.
Welcome to LymeNet. Many helpful friendly people here. Ask all the questions you need to.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks Bea and Sammi, I apprecaite your input..They never found Lyme or EBV in the spinal fluid, however i don't think that mayo even checked the s-fluid for Lyme..My CFS specialist did and it was neg. I did test positive for EBV both IGG and IGM..For some time while I was sick..I am petty sure that this was the cause of my mono for one month prior to getting Chronically ill 6 months later..I have never had joint pain or swelling but all the other symptoms of lyme, is that common? When I first became ill, I was lost in my own world, couldnt think, neck really really stiff, muscel pain and muscle twitches.. couldn't stand light and noise and still cant but better then before, couldnt hardly read or watch TV..thought for sure I was dying..felt as if someone had pullled my brain out and stuffed it with cotton and I was watching the world through a thick pane of glass..This all happened at age 25 and now 6 yrs later I may be on the right track..I did test neg for all the co-infections through MDL. However my doc still thought he may treat me with cipro for Bab..Are these bands that you mention contribute to the IGG and IGM? My LLMD does know that I am on a beta-interferon but he was fine with it, I only have 2 infusions left and I am done with the trial, i think it is Interferons that they are more concerned about.. Thanks so Much, Clay
Posts: 9 | From Nebraska | Registered: Jun 2006
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posted
Beck...I'm a bit overloaded right now, but have you read this?? I would be VERY concerned about all the IND's which most LLMD's consider to be a weak POSITIVE.
posted
Thanks for all your responses..You all are great here..Thanks so much for the article form Dr. M Lymetoo, its a must read for anyone whom is just coming into the Lyme realm.. Thanks again and be well, Clay
Posts: 9 | From Nebraska | Registered: Jun 2006
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