lymed out

my quest to getting these suckas out!

So it’s not all about me anymore.

If it’s not one thing, it’s another. From 2 posts ago, I mentioned that I took my 5 year old to have him tested at my LLMD’s office with the IgeneX Western Blot. I got the results yesterday (shown above). As I did this mainly for the reason to have peace of mind, there really is no peace. The bottom line here is that he has been “exposed “ to Lyme and according to these results, it shows that he has made antibodies specific to Borrellia. Remember IND means a small yes. More details below.

Source from: Western Blots made easy

Igenex Western Blot Break Down by band

• 9 cross-reactive for Borrellia
• 12 specific for Bb
• 18 highly specific to Lyme (from the link above by Dr. James Schaller, if this band alone is positive, you have Lyme)
• 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 – Has cross-reactivity with several different types of viruses
• 31 outer surface protein A (OspA), specific for Bb – Has cross-reactivity with several different types of viruses
• 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 spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas)
• 45 cross-reactive for all Borellia
• 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

Further excerpt by Dr. James Schaller, M.D. on Western Blots made easy.

Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant–perhaps this is a rhino? This is the 41 band. It is from the flagella’s, the parts inside Lyme that help it move—they get a lot of attention in the body, in the same way a whip snaps and gets attention in the hands of an expert user. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.

Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. Jones’ point. It you see a Western Blot 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme—just like double tusks on an elephant.

What Do the Number of Pluses Mean?

IGeneX gives levels of antibodies. One + means you have some antibody of that type. A single positive is plenty strong, because that is the same level of brightness seen in the positive control run next to your blood test. This means they run a fake sample with all 13 proteins which should show always show up as 13 positives. It helps confirm no error in the testing.

If you have a ++ or a rare +++, this means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives sometimes goes up with treatment and healing of the immune system. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.

Also, many people have “IND” or indeterminate findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. Consider a positive in the level of a single + to be a sharpie flair black line. I consider the IND to be a black pen line.

In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the IND sometimes becomes a clear + which means you now have new and clear antibodies against this part of the Lyme bug. I consider all IND’s as weak positives. This is my opinion.

Currently, IGeneX does not use Dr. Jones’ criteria. I have not asked them why. Perhaps because they are accountable to different laboratory regulating agencies and in general the government is perhaps decades behind real-world clinical medicine. Apparently, the government and many insurance companies blindly follow 14 individuals who actually think they can control 800,000 physicians and 300 million Americans.

So my questions are:

  1. Could this have been passed in utero? If you compare my IgeneX results with his, you will see we have the same bands marked, his is IND, mine is ++. I showed symptoms 3 years after he was born, so does this mean that my Lyme was dormant in my system? Or could we have been vacationing together and got this? All unknown.
  2. Do I treat him if he has absolutely ZERO symptoms and awaken a potential beast? Or do I treat him when symptoms start coming if at all? At which time from what I read, it can be either slow or fast.

My LLMD’s response:

All you can say from a Lyme blood test is that there has been exposure to the Borrelia Burgdorferi (Lyme) bacteria if there are either IND (indeterminate= weak positive) or +’s (positive’s) next to the ** bands (except for band 41, which is + in all Lyme patients, but is not specific for the Lyme bacteria – it can be from bacteria in the mouth). So an IND or + in bands 23-25, 31, 34, 39, or 83-93 means they have been exposed to the Lyme bacteria. (There is no mention here of Band 18)

You cannot say someone has Lyme disease from a test result that says “positive” because the only way to make that diagnosis is clinical symptoms. Some people have a positive test but no symptoms – they do not have Lyme disease, they have been exposed to the Lyme bacteria but without symptoms they cannot be said to have Lyme disease.

LLMD’s Bottom line: Don’t treat based on labs, treat on symptoms. This brings me back to what my LLMD told me 2 weeks ago. “ Be weary about trusting tests. It is not about proving it on a piece of paper. It’s about how you feel.” Of course, this is only in relation to Lyme.

My Lyme Homeopath’s response:

I emailed my Lyme Homeopath to get his interpretation of the results and he said this is suspicious of Lyme and to do a Lyme Challenge (if I wish to). The Lyme Challenge (which is what I did back in March 2012) is when you take herbs such as Cat’s Claw or Teasel Root for several days to see if it produces a herx. A 5 year old would most likely do 1/4 adult dose. I asked if this would “awaken the beast”. He said no. But I am not sure if I want to do this because I’m not trying to prove whether he has Lyme or not (like in my case). Infact I want to disprove it. If I were to treat him, I will not subject my 5 year old to harsh antibiotics. If anything, I will do as my LLMD advised on symptomatic kids and start him on the Cowden Condensed Protocol with specific dosages according to weight. However, I need to do more research on that and I need to monitor him on symptoms. In the meantime, my pantry will be cleared out of all skittles, gummi bears and chocolate chip cookies.

Another great point that he brought up was the mention of Dr. Dietrich Klinghardt where his theory is that 70% of people on earth are walking with Lyme antibodies and their immune systems can fight off the infection.

Homeopath’s Bottom line: Don’t treat if asymptomatic.

Dr. Marty Ross Response:

A western blot is a technique used to see if a person is making antibodies that attach to very specific proteins found on the Lyme germ covering. We identify the proteins by what they weigh. For instance, one of the proteins weighs 18 KDa (a KDa is a microscopic unit of weight.) On the western bot a + of ++ or +++ means that the tests detects antibodies against that protein. An ind could mean one of two things: there was a very weak antibody reaction so it is barely detected or during the test some dirt or another artifact showed up on the test strip. So an Ind could be a weak antibody reaction but is not always. A test is positive if there are antibodies against 2 of the following, 23-25, 31, 34, 39, 41 or 83-93. Ind do not count in determining a true positive. Having said this, I would interpret the results as very weakly positive given the number of ind findings at the 6 important proteins.

However, having a positive test or even a weakly positive test does not prove one has Lyme. We also have to consider is there a risk of getting it, the symptoms, any physical findings. So in the case of a person like your son who does not have any symptoms, I do not treat. It is possible that even if he has Lyme his immune system is dealing with it. I do not use antibiotics in this situation because they may not rid his body of the infection if it is present, it is also possible they could cause any Lyme to become dormant which is much harder to treat. Finally, even if he is on antibiotics, it is not clear how long to treat given that he does not have symptoms.

Yes, some of my patient had Lyme infection but not disease for many years and then they became symptomatic. Again though it is hard to tell who this will happen in.

Regarding the 18 +, the Europeans consider it to be one of the important proteins. I sometimes consider it, but prefer to look at the reaction to the six proteins I discussed earlier.

Dr. Ross’ Bottom line: Don’t treat if asymptomatic.

Ok, so I got 3 of the same answers from great sources and my mind is now at ease. Again, the good news is that he shows no symptoms at all, he’s very active, sleeps really well, very smart and intelligent especially with technology, on the ball, and can sometimes outwit me and always calls my bluff.

So what next? Right now, I must leave things up to God and pray that everything works out fine for our future. Next step, get hubby tested. I’m curious now to see if every living soul on earth has Lyme antibodies.

Just curious, what would you do in my situation and have any of you been in this dilemma? Any advice would be appreciated.

In other news, I got my monthly blood labs back and things are looking much better.


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14 thoughts on “So it’s not all about me anymore.

  1. I have always worried that one day if I get lucky enough to find a wife and have kids that I could give my children Lyme somehow.

    Since he is showing no signs yet then the best thing to do is keep an eye on him for any unusual signs or symptoms in the future. I was infected with Lyme and many tick-borne diseases at age 6. It took nearly 28 years before they made me disabled. I did show many symptoms as a kid yet in those days Lyme was not a household name. My mom and doctors thought I just had bad luck and I would get many rare medical issues.

    I wouldn’t worry too much right now but maybe as he grows and starts to show signs. Do his regular check-ups, blood tests and if you start to see signs you know are Lyme then take him to the LLMD.

    I would say if he is showing physical symptoms where he can be diagnosed such as.. dizzy, neuro issues then start to treat but I would stay away from antibiotics or at least longer than a month. He is too young for long term abx. Maybe try herbals. But lets hope it doesn’t get to hat point right. 🙂

    I think he will be fine. He may have a strong immune system and be a healthy boy for the rest of his life.

  2. I am in the same boat in regards to wanting my husband and my 22 year old to have the Western Blot done by Igenix, but it is because of symptoms I am noticing and an incredible story posted by Dolores Claesson on most Lyme sites yesterday. I felt so fortunate that I was the only one infected in the family. The docs did the basic Lyme test on all my kids and husband, but we know that’s a waste of time. So in response to your question, yes, Lyme could have been dormant in your system at the time of his birth or it could have been on vacation – choose the vacation as you don’t need any more guilt thinking that this is your fault! Your LLMD sounds smart and usually swollen knees or a facial Bell’s Palsy is get to the doctor sign in children that weren’t showing any symptoms. There are lots of kids who have constant headaches – which is telltale as at his age he shouldn’t have any. Of course, any one of these plus fever is a huge positive. I wish you some peace of mind in knowing that he is symptom free right now and offer this: try your hardest not to quiz him too much or he might think you want to hear “YES” after a while. At his age, you probably still help him bathe, so it is the perfect opportunity to “check him out” without saying anything. I will be thinking only positive thoughts for your son and I am glad your lab numbers are better. Be well! Kathi

    • Lymed Out on said:

      Hi Kathi,

      YES! I have been quizzing him much in the past 2 months and I notice he only comes to me with his “minor” aches and pains to see if he can get a reaction from me (he never goes to hubby for this), so I need to bite my tongue and just observe. Thanks for your words of encouragement. Are you going to get your fam tested? Do they shows signs?

    • Well, my husband has a doctor’s appt. for MRI results due to tingling and numbness in his fingers that looks like it is from stenosis of the cervical spine, but I called the office yesterday to tell them my concerns as I have Late Stage Lyme and he is all of a sudden unable to finish any job he starts around the house, was outside at a work outing and complained that his lower legs ached and he was just out of shape and old (50). He never complains, he does have a diagnosis of ankylosing spondylitis that has only tweaked his hips, but now he is probably worried that it is going to start causing real damage. I asked them to have him get the Igenix test and have the doctor talk to him about stressors in his life. He falls asleep all the time and says it’s because he sits at computers all day. The nurse was so lovely and typed everything I said and was going to talk to the doctor. My daughter is another thing altogether as she does not live here (22) and even though her senior year was hell for her – she did not graduate and keeps putting off getting her GED and she is so smart, has lost at least 20 pounds, was a raging maniac and complaints of joint problems she blames on all her cheerleading. She doesn’t have her license, something else she keeps finding excuses for and has not been to the doctor’s for a physical in over 2 years never mind the dentist and we have dental insurance. My sister was just here for a visit and told me to make an appt. and tell Meg that she was coming to take her even if she had to pull her by the hair. I love my sister! She lives with her boyfriend who is controlling (something Meg never would have put up with) in his parent’s in-law apt. and works tons of hours in retail so always has an excuse. I’m really tired of it. That’s my story!

      I am glad I was able to give you a little helpful advice 🙂

    • Lymed Out on said:

      Yikes! it’s a little more difficult then to try to convince older kids…. so I should count my blessings that he’s only 5…

    • YIKES – my husband was so pissed that I called the doctor’s office that he wouldn’t talk about it at all – I had hijacked is visit he said and he didn’t get the MRI results just lots of questions about how he was feeling. Maybe I’m paranoid, maybe it’s a result from this new IV Doxy. But I know I was worried for him. I don’t know why he didn’t ask about the MRI – he was probably so mad he wasn’t even talking at that point!!!!!!!!!!!!!!!

  3. This is a hard situation to be in. I think that 1) you are with a very knowledgeable group of doctors, listen to them. STOP LISTENING TO THAT VOICE INSIDE YOUR HEAD, that worrying voice(that annoying voice..that we all have). If he shows no symptoms, then let it be.

    I’m glad that you are feeling better. In regards to the Paleo Diet, diet plays such a big role, I went gluten free and feel good (even drinking green smoothies for breakfast and tonight I am doing my own almond milk thanks to your recipe.) 🙂

    Sending you hugs your way.


  4. Rebecca on said:

    Hi, I was wondering how your son is doing. I tested by son by igenex and he came back igg positive with bands 41 and 39. He does not show any symptons at all so wonder the same as you- what is going on? Should I treat him or wait? It is torture wondering. Just had my daughter and myself tested as well but I am waiting for results. We do not have symptons either but had us all tested because my little guy had the rashes and got treatment. Thanks for any advice/help you can give me.

    • Hi Rebecca,

      My little 6 year old shows no symptoms… well he does have the “oh my leg hurts” or “my tummy hurts”… and then I flip out and get all paranoid when those things are probably very well just growing pains as a kid. So if I take a step back and if I didn’t know anything about lyme, then I can safely say he has absolutely no alarming symptoms… my doc said to watch for signs of repetitive sickness… and if they get tired all the time, etc, my son’s nickname is energizer bunny and he never stops… which sometimes is annoying but at the same time good, because I know he’s well…. so if they don’t have symptoms, my doc said not to treat. Remember, Lyme is ALL ABOUT SYMPTOMS!!! take care and keep me updated.!

  5. Rebecca on said:

    Thank you so much for your reply. I feel the same way when any of my kids complain about anything hurting them. I guess all we can do is pray! I will let you what my daughter and my results are when we get them in about a week.

  6. It’s a very confusing disease for sure. I was diagnosed … bulls-eye … covered in rashes, a bite (originally suspected a spider bite) … started breaking out in rashes two weeks later … eventually bulls-eye rashes up one arm … terrible mess … prednisone and cortisone cream did not work … diagnosed at a local hospital and put on doxycycline … within 48 hours, rash stopped spreading and by the time I finished two weeks, feeling much better, rashes healed … but had a terrible time with neck pain and what felt like a muscle spasm that kept moving around my left shoulder. Original symptoms, included eye infection, confusion, memory problems, brain fog, sleeping ten hours at night every night, rash was itchy/ burning, felt like my skin was crawling, weird feelings like nerves moving around my body, by the time I went to the hospital and got treatment at 30 days. Of course, the Elisa test showed negative. However, I was lucky to get an appt and see an infectious disease specialist four days after I completed first round of antibiotics. Received another three weeks and had chiropractic treatments for the neck and shoulder pain. Finished second round of antibiotics (total five weeks) … visited a lyme cognizant naturopath who has suggested the Cowden Protocol and intravenous vitamin C, along with a botanical (including Cat’s Claw) which he provided. Just deciding which way to go … being retired, I want to spend my few dollars wisely.

Foggy brain or not, I would love to hear from you!

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