Daughter's IgeneX results - what would you do?

I had my daughter IgeneX tested - WB IGM only. She has band 31++ and band 41 IND. I've seen Dr. H's graphic showing the bands that are highly related to lyme and I know that 31 is one of them. Obviously she's CDC and IgeneX negative.

She's been symptomatic off and on. In January she woke up one morning after an illness and couldn't walk. That lasted for a few hours. She lost hair this summer; not losing as much now. She's had headaches but I now have her on an elimination diet due to many food allergies and intolerances. She has the pins/needles feeling in her hands.

I'm willing to treat with herbals, but what do I do about vaccinations? I don't want her vaccinated, but she's not CDC positive so how do I get out of that? I'm afraid if she's vax'd, it'll make her symptoms worse. Also, what about high impact exercise - running the mile in gym class, intensive tumbling class, etc.? She's only 11 - will going through puberty cause a flare in symptoms?

My opinion would be that if you have babs and bart yourself, your daughter likely has those infections as well. It does sound as though your daughter is somewhat symptomatic - have you tested her for any coinfections?

We are fortunate that we live in Ontario where exemptions are available and I have taken them out for both of our children - K as well as her healthy 19 year old brother. We will not be vaccinating again. K's pediatrician is insisting on vaccination as part of her well visits - we will not be going back to the ped. either.

I would let her go ahead and participate in physical activity if she is showing no cardiac involvement. It will serve as an indication to you as to how she is coping with physical stress. I remember at one point (age 9) K could only sit on the curb watching as her friends played because she had no strength at all. She is great now though (age 14)!

K's headaches and extremity numbness/tingling both resolved early on with bartonella treatment.

K went through puberty 1 year ago, with no physical symptom flares. However at that time she had completed her bartonella antibiotic treatment and we had transitioned to herbs (which included treatment for babesia as well). I see the normal emotional PMS swings now, but nothing extraordinary.

I agree and disagree with both rowingmom and itsnotjustlyme.

My answer would be treat, treat, treat. Her symptoms alone are enough and the western blot results as indeterminate strength the case for Lyme. i believe that there is another test you can have run based on the 31 and 41 being indeterminate. Some people have done it, but again I would go with her symptoms.

Someone please chime in and chastise me if my information is incorrect.

As far as high impact exercise goes I would a stop to that immediately. Yes she does need to exercise but high impact exercise is just going to punish her body. Walking is great. If you belong to a gym that has a pool, they usually have a water aerobics class designed for arthritis patients and that is really good. I belong to a gym that is associated with a local hospital and they definitely have those classes. I also sometimes just go when there are no classes and walk in the pool back and forth. There are usually "weights" you can use for exercising arm muscles. The water provides resistance but doesn't put the same stresses on the body as exercise out of the body. There are also things that can be done at home like resistance bands and an exercise ball. You can get them at any store that sells athletic equipment and they usually come with instructions for exercises. There are also some good books and youtube videos aimed at people with chronic pain.

The other thing is that she needs to listen to her body. It will tell her when she has pushed it too hard before she ends up in bed unable to walk. At 11 she is old enough to learn this. She is the only one who can make that judgement call.

Here goes.

You should get her vaccinated. Her immune system is already compromised. Without the vaccinations she is at risk. You never know when someone might walking around in public unknowingly exposing people. I had a friend whose son had leukemia and she couldn't even take him to the grocery store because some people with kids sick from chicken pox would bring their with them to grocery store thinking "its only chicken pox everyone gets it." But for some one with a compromised immune system there is no "only".

During the outbreak of measles that started at Disneyland the people that got the measles were people who were not vaccinated. The risk of many of the things we vaccinate our children against is far greater than the risk of the vaccine. Its the complications that is the issue.

The only time my kids had a reaction to the vaccines was the flu vaccine and that was just a little cold like reaction. The rest were no problem. Neither of my kids had any flare of symptoms during puberty. My son has been symptomatic since he was a toddler.

The only issue they had with puberty were hormonal. My daughter was hypothyroid and my son's body did not produce enough growth hormone. Both had testing done as a result of either falling off the growth chart pr not growing enough during puberty. Both are now slightly above average in height.

The elimination diet. Are you removing one food item at a time? Just like Lyme&co, if you multiple food sensitivities you will never find the by eliminating one food at a time. Dr Horowitz's 16 nails in your food analogy works here.

A couple of years ago I worked with an allergist who recommended an elimination diet that goes as follows. For two weeks, chicken; white rice and salt. No oils, no spices (especially black pepper). Nothing else, nothing out of a bottle or can. The white rice is because he has found it to be the least likely to cause people to react. The only issue with chicken is that some people who react to eggs (and the whites are the part of the egg most people have a reaction to) can cross react with Chicken. So he said i could replace it with Lamb or beef. Turkey however is something that many people figure out when trying the diet by themselves.

After the two weeks, add in one food item at a time as long as there is not reaction to it then in another 4 days you can add something else. If there is a reaction then you have to remove the food item and let your body get back to where it was before that food was introduced.

He also said that when you introduce a food you are sensitive to the reaction will be way worse than you have ever had before. After a while some people can add in foods that they have had a reaction to because once you have gone a long time without the offensive food it kind of resets itself and there is no reaction.

Having said all that, the chicken/rice for two weeks is an impossible diet to stick to. i modified it to start with foods that are least likely to cause problems. This made it easier.

Just my two cents,
Kim

I personally had the 31 epitope test done to make sure it wasn't cross-reacting. It was positive.

Just to clarify about exercise - I would let your daughter be the judge of what she can and can not do. K started Celtic dancing (ie River Dance) 2 years before she developed symptoms of bartonella. She loved (and still loves) it. I let her continue, explaining to the teacher the treatment/symptoms she was experiencing. She danced when she could, and sat out when she couldn't. She remained very involved.

It wasn't easy for her to dance with severe shin pain and headaches, but she kept up with her peers. As treatment progressed she reported less and less pain. When bartonella abx were weaned she still had some shin pain, although only with dancing, not walking or running. The addition of babesia herbs made all the difference to this exercise-induced pain, resolving it completely.

If I had pulled her out of dance between the ages of 10 and 13, I have a feeling she would no longer want to be involved as her class would now be 3-4 years her junior.

If the sports you mention are important to your daughter, I would try to keep her involved in them at some level.

As for the comments on vaccination; until you have seen your child regress into oral apraxia and develop ASD symptoms within 3 weeks of the initial 15 month MMR vaccination (and to be told by the doctor that it is a coincidence), and develop symptoms of what I now know to be the autoimmune syndrome PANS within 1 month of the 7 year MMR booster, you will not question the authority of the prescribing doctor. I have, and I do.

Our LLMD feels that K's negative response to vaccination was the result of her congenital infections as well as her MTHFR deletion. She was one of the immune/detox compromised, only I didn't know it.