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one positive band on Western Blot
Hello everyone,
I will be seeing an LLMD on Monday for a number of neurological symptoms that I have had since July of 2008. This all started with a rash and a viral infection. I have had numerous tests for MS, autoimmune, thyroid issues and the only thing that came back positive was Epstein Barr titers and low Vitamin D. I reviewed my labwork last night and noticed that when I had the Western Blot test in October of 2008, I had a positive band present, which was #18. I also had a spinal tap that revealed high myelin basic protein but also revealed(0.21) Lyme present. The neurologist never said anything about this. I explained to him that I would be seeing an LLMD and having a test through Igenix. Does anyone have any thoughts about the one positive band and the spinal fluid revealing a small amount of lyme?
Any insight will be helpful at this point.
Thanks
I will be seeing an LLMD on Monday for a number of neurological symptoms that I have had since July of 2008. This all started with a rash and a viral infection. I have had numerous tests for MS, autoimmune, thyroid issues and the only thing that came back positive was Epstein Barr titers and low Vitamin D. I reviewed my labwork last night and noticed that when I had the Western Blot test in October of 2008, I had a positive band present, which was #18. I also had a spinal tap that revealed high myelin basic protein but also revealed(0.21) Lyme present. The neurologist never said anything about this. I explained to him that I would be seeing an LLMD and having a test through Igenix. Does anyone have any thoughts about the one positive band and the spinal fluid revealing a small amount of lyme?
Any insight will be helpful at this point.
Thanks
Jason,
All 3 of my EBV titers were high. The reactivated # was in the 2000s and the other one was in the 1500s. Only the first titer was slightly elevated with all 3 normal ranges being 0-99. Therefore, my titers are off the chart. My neurologist has not tested me since October, which makes no sense to me. My ID didn't even acknowledge Epstein Barr, which is ridiculous. The rheumatologist didn't do anything for me. My PCP is useless and therefore, the only hope I have left is the LLMD. It certainly won't hurt me to go and see what she has to say. Right now, I know that I have HSV, low Vitamin D, Epstein Barr, and possible thyroid issues (Graves Disease). My neurologist is treating it with some natural supplements, which don't seem to be helping much, but is helping some.
All 3 of my EBV titers were high. The reactivated # was in the 2000s and the other one was in the 1500s. Only the first titer was slightly elevated with all 3 normal ranges being 0-99. Therefore, my titers are off the chart. My neurologist has not tested me since October, which makes no sense to me. My ID didn't even acknowledge Epstein Barr, which is ridiculous. The rheumatologist didn't do anything for me. My PCP is useless and therefore, the only hope I have left is the LLMD. It certainly won't hurt me to go and see what she has to say. Right now, I know that I have HSV, low Vitamin D, Epstein Barr, and possible thyroid issues (Graves Disease). My neurologist is treating it with some natural supplements, which don't seem to be helping much, but is helping some.
I've seen various specialists: LLMD, ID-viral, Migraine, Rhemy, MS, in addition to regular ID and other doctors. Only the MS and Rheumy specialists thought that I didn't have their respective specialty so I crossed them off my list. The only thing in common to all of these doctors, but the LLMD, is that they believe that my illness is proably something other than Lyme. I suppose it is also possible that I have more than a single illness, but it's too horrible to imagine I have multiple illnesses. It seems that all of my CNS is being attacked, so I see no reason why a single illness/defect in the brain couldn't explain all of it.
We can debate the validity/appropriateness of ILADS vs. CDC guidelines on whether a Lyme test is considered positive or negative. But one thing that confuses me and irritates me is what lab I should use/trust -- that shouldn't really be a subject of debate, but it is.
I don't pretend to know much about the sensitivity or error bars with these measurements, but I doubt they can be that great, since my blood work sent to different labs has given fairly different results as well, at nearly the same time.
By my ID's comment: EBV was slightly high and HSV1 was moderately high, at least compared to folks that have seen improvement from being on antiviral therapy. I didn't catch your EBV numbers.
We can debate the validity/appropriateness of ILADS vs. CDC guidelines on whether a Lyme test is considered positive or negative. But one thing that confuses me and irritates me is what lab I should use/trust -- that shouldn't really be a subject of debate, but it is.
I don't pretend to know much about the sensitivity or error bars with these measurements, but I doubt they can be that great, since my blood work sent to different labs has given fairly different results as well, at nearly the same time.
By my ID's comment: EBV was slightly high and HSV1 was moderately high, at least compared to folks that have seen improvement from being on antiviral therapy. I didn't catch your EBV numbers.
I hate the pulsatile tinnitus. I was just dealing with regular tinnitus and now I have both. I have seen many posts that state that lyme in the spinal fluid is unreliable. I was surprised just to see any lyme detection at all. On top of that, to have one very important band to be present should certainly be of some significance. I have not had the CD57 test done, but I am sure the LLMD will do it on Monday.
We certainly have a lot in common with having all 3 of the positives listed above. Were you ever worked up by an LLMD? If so, how did that turn out and were you actually positive for lyme disease? Yes, my viral responses are very high. Were you EBV titers that high?
We certainly have a lot in common with having all 3 of the positives listed above. Were you ever worked up by an LLMD? If so, how did that turn out and were you actually positive for lyme disease? Yes, my viral responses are very high. Were you EBV titers that high?
Thank you for your kind words and your insight. It has certainly been a very trying time for me. Your story was inspiring. At least with lyme and the antibiotic treatment, you are feeling better. I hope to do the same. I have my Igenix test with me and I will be heading to the LLMD on Monday. Its over 2 hours away, but after all that I have been through, I don't care. I need to know what is going on with me. Whatever it is has got my thyroid function all messed up too.
Sorry to hear your troubles. They are very similar to mine and others that have responded. I also have pulsatile tinnitis, which is 24/7, so I learned a new name for it.
For a time period I had accelerated heart rate, but haven't had that for > 6 mo so I hope and think that was correlated to the medication I took (Nortriptylene). Since I've been on Gabapentin my heart rate has been well behave.
Each specialty doctor will give you a dx from his/her speciality. I have 3. I need a 3 sided coin to make my own dx. I also have high EBV, HSV1 and low Vit D.
I don't know about the sensitivity of Lyme in spinal fluid, but if it is like the other blood tests, I would take the 0.2 at face value as negative (i.e., presumably not out of family with normal healthy population is my guess). But as you know, no one gives a lot of credence to these tests anyway. By comparison, your viral responses are high compared to normal population. Did you have your CD57 measured, I assume LLMD will advise for this?
For a time period I had accelerated heart rate, but haven't had that for > 6 mo so I hope and think that was correlated to the medication I took (Nortriptylene). Since I've been on Gabapentin my heart rate has been well behave.
Each specialty doctor will give you a dx from his/her speciality. I have 3. I need a 3 sided coin to make my own dx. I also have high EBV, HSV1 and low Vit D.
I don't know about the sensitivity of Lyme in spinal fluid, but if it is like the other blood tests, I would take the 0.2 at face value as negative (i.e., presumably not out of family with normal healthy population is my guess). But as you know, no one gives a lot of credence to these tests anyway. By comparison, your viral responses are high compared to normal population. Did you have your CD57 measured, I assume LLMD will advise for this?
Hi Ginak,
I spent over a year with the incorrect dx of MS, only to find out a few month ago that I do indeed have Lyme. A couple of thoughts on MS:
1: The definition of "MS" is simply "multiple scars". It is just a name for a collection of symptoms that no one really knows the cause of. Most believe it is an autoimune disorder. Don't let the disease scare you.
2: Some researchers believe Lyme can induce MS. Some believe MS is Lyme.
3: With abx for Lyme, you can (and most do) get better. With the disease modifying meds for MS, you are simply helping the disease not to progress. In my case, I spent a year on an injectable and only got worse and worse.
Both are serious, but they know what causes lyme and it can be treated. I also agree with the person above that says "any lyme in your spinal fluid is telling". Take care, Amy
I spent over a year with the incorrect dx of MS, only to find out a few month ago that I do indeed have Lyme. A couple of thoughts on MS:
1: The definition of "MS" is simply "multiple scars". It is just a name for a collection of symptoms that no one really knows the cause of. Most believe it is an autoimune disorder. Don't let the disease scare you.
2: Some researchers believe Lyme can induce MS. Some believe MS is Lyme.
3: With abx for Lyme, you can (and most do) get better. With the disease modifying meds for MS, you are simply helping the disease not to progress. In my case, I spent a year on an injectable and only got worse and worse.
Both are serious, but they know what causes lyme and it can be treated. I also agree with the person above that says "any lyme in your spinal fluid is telling". Take care, Amy
Patsy, I don't know what made me go back and look at my spinal fluid results and yes, it clearly states that under Tube #3, the results for VDRL was Non-Reactive and for LYME, the result was 0.21. The reference range is showing <0.90, which is why I guess to the neurologist, this is a negative reading.
I told him that I was going to see a LLMD and he laughed. He told me that he would sign off on the Igenix results if I wanted him to. I told him that it was ok and that I would give him a copy of the results once they were received back.
The first infection that I had was viral and that was in July. The virus went away (HSV) and in September, I came down with like a sinus infection/cold and that is when the parasthesias started. It could be a bacterial infection, but right now, the only thing that I have been told is that I have Epstein Barr because my numbers came back very elevated.
I did read the information from Dr. Crist. I really hope she is very familiar with the information and treats accordingly.
I told him that I was going to see a LLMD and he laughed. He told me that he would sign off on the Igenix results if I wanted him to. I told him that it was ok and that I would give him a copy of the results once they were received back.
The first infection that I had was viral and that was in July. The virus went away (HSV) and in September, I came down with like a sinus infection/cold and that is when the parasthesias started. It could be a bacterial infection, but right now, the only thing that I have been told is that I have Epstein Barr because my numbers came back very elevated.
I did read the information from Dr. Crist. I really hope she is very familiar with the information and treats accordingly.
Thank you so much for responding. I can certainly understand why you were relieved when you received an abnormal reading. At least knowing what monster you are dealing with will allow you to move forward. Right now, its still treating symptoms of an unknown cause for me. I just left my PCP's office, which was a waste. She spent all of 7 minutes telling me why I needed to lose weight. Not one time did she discuss how abnormal my thyroid results were, which is probably why I had gained 3 lbs. I asked her about lyme and showed her the results and she laughed at me and said that there was no lyme disease in Georgia. Yea right....Heard it all before.
I will certainly post on Monday when I leave the LLMD's office. I pray that I can get some answers and some help.
I will certainly post on Monday when I leave the LLMD's office. I pray that I can get some answers and some help.
If you haven't already, I recommend you read Dr. Crist's info. about testing in the health pages. It explains the band 18.
Oh my goodness!!!! Lyme in your spinal fluid. The number should be zero. IMO, any is a positive. Let's see what the llmd says. I'm glad you are seeing him. You need a correct diagnosis.
When you said you had a "viral infection" how do you know it truly was viral and not a bacterial infection?
What did the neuro say about you seeing the lyme doctor? I would be livid about not being told about the spinal tap result!
When you said you had a "viral infection" how do you know it truly was viral and not a bacterial infection?
What did the neuro say about you seeing the lyme doctor? I would be livid about not being told about the spinal tap result!
Ginak, Sorry to hear that you are so upset. You have been through a lot. Believe me I know it is an emotional ordeal. Been there done that. It's not a picnic. Just know that you are a strong person and your only choice is to go forward.
I went two neurologist, ENT, Endocrinologist, Head-neck rehab, my GP,Cardiologist,and other specialist I can't even remember. Took a ton of tests. Went to the hospital twice for a rapid irregular heart beat, still have the ringing in my head which is most annoying, right side of face went numb, stiff neck, balance issues and the list goes on. I had a history of an infected deer tick bite. I just never put it together with my symptoms.
I can tell you as oddly as it sounds when my test came back positive I felt relieved. I finally knew what I was up against. You have gone down a typical road that most Lyme patients go. We still don't know what it is you are dealing with but once you have your answers you can start treating it. You will get better.
Please post back after Monday I am curious to know how your appointment went.
The waiting is the hardest part.
Stephen
I went two neurologist, ENT, Endocrinologist, Head-neck rehab, my GP,Cardiologist,and other specialist I can't even remember. Took a ton of tests. Went to the hospital twice for a rapid irregular heart beat, still have the ringing in my head which is most annoying, right side of face went numb, stiff neck, balance issues and the list goes on. I had a history of an infected deer tick bite. I just never put it together with my symptoms.
I can tell you as oddly as it sounds when my test came back positive I felt relieved. I finally knew what I was up against. You have gone down a typical road that most Lyme patients go. We still don't know what it is you are dealing with but once you have your answers you can start treating it. You will get better.
Please post back after Monday I am curious to know how your appointment went.
The waiting is the hardest part.
Stephen
Thank you for replying back to me. I cry as I write this to you because I am just having a rough time emotionally with all of this today. Since July of 2008, I started off having rapid heartbeat, then migratory joint pains, tingling, numbness, and electric-shock like sensations all over my body, tinnitus in left ear, pulsatile tinnitus in my right ear. I am also having some internal tremors that seem to be noticeable only to me. I am driving over 200 miles to see the doctor and I am just tired at this point. My neurologist seems to think that I have a much greater chance at having MS since the Epstein Barr titers are very high. Any insight would be helpful. I am just frustrated and have lost faith in the medical community.
Ginak, #18 band is specific to Lyme (outer surface protein). For what it's worth I was tested twice for Lyme and they came back just negative. After 7mos of numerous doctors I saw a Lyme doctor who tested me through Igenix and it came back CDC and Igenix positive with numerous bands.You have underling evidence that supports your direction. I think you are doing the right thing.
What are your neurological symptoms?
Stephen
What are your neurological symptoms?
Stephen
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