Sunday, May 29, 2011

Round 2: Testing for Congenital Lyme Disease


Congenital Lyme Disease - Three words I wish had never heard. I would be much less distraught if this fight was between me and Lyme alone. But, there is a chance that won't be the case. There's a chance that I passed this disease on to my children in utero.

This week, my husband and I took our children to a local doctor who is considered Lyme-friendly (meaning he won't laugh you out of his office when you say you suspect your child contracted Lyme in utero.) We found out very quickly that finding a doctor who will believe you, test you and treat you is battle #1 in this crazy Lyme fight. And that is for adults. It is an even bigger battle when it comes to kids.

Case in point: One of the first things I did was contact our children's pediatrician to inform her of my diagnosis (CDC-positive for Lyme Disease) and to schedule an appointment to get them tested. I was met with confusion and opposition. She requested I see an Infectious Disease doctor (a specific one here in Central Florida, that I found out later has laughed in the face of many a Lymie), so that she can become more informed and better help our children. While I appreciate the sentiment and understand her thinking on seeing an ID doctor, I was disappointed and frustrated that she wasn't automatically in our corner, ready to do whatever is necessary to help our children.

The search for a LFMD
So, my hunt began for a Lyme-friendly, Lyme-literate Pediatrician in our area. One of my new Lyme friends who is struggling with her children's recent Lyme diagnosis, told me about a Facebook message board for parents of children with Congenital Lyme. Thank goodness, I thought! Surely they will know of a doctor who can help. While the members of that board are highly supportive, not all of them live in Central Florida, and those that do have learned to keep their doctors names quiet (sometimes at the request of the doctors themselves), because if that doctor is discovered to be treating Lyme for children, he or she could lose their medical license, leaving many parents without treatment options for their children. This is a scary prospect, especially since it is not safe to stop treatment mid-way, especially in children.

Finally, my good friend Kathy referred me to someone who used to live in Central Florida: Helen Metaxas Raser. Helen is an activist and advocate in the Lyme fight. Her daughter, Teri, is fighting for her life. They moved to Washington so that her daughter can see Dr. Klinghardt, a renowned doctor in the area of Lyme treatment. Helen recommended we take our children to a Lyme-literate doctor about 40 minutes away, North of Orlando, for testing. I am forever grateful to her because although we may have to go out of state eventually if our kids require treatment, I had hoped to get their initial tests done locally. In addition, she has been a tremendous support and source of information in my search for direction.

You Are Now Entering The Twilight Zone
I contacted the doctor's office she recommended to confirm they would test our children. The whole experience was bizarre (partially because I still feel like I am living a bad dream, waiting to wake up and realize we aren't going through this nightmare.) The responses I got from the office staff on two separate calls were cryptic and seemed almost rehearsed. If our children were due for their well visits, they could see the doctor. If not, they would see a PA and he/she could consult with the doctor about the possibility of Lyme. They would give us a script for the labs and it would take approximately 30 days to get the results, as the labs would be completed out of state. We would need to come into the clinic-side of their lab, where appointments were not necessary. Just show up during business hours, they instructed. So, we did.

The outside looked nice enough, but the inside was a bit discouraging. The floors looked like they hadn't been cleaned in months. They had two toys in the waiting room that were filthy and broken. But, we were there on a mission to get a script for Lyme testing.

We saw the PA, as they said we would. Here's where it got even more bizarre. Initially, she acted like she couldn't understand why we were there and why we would think our kids have Lyme. I spoke up immediately: "We came here because we were told that this doctor believes that Lyme is transferred to the fetus during pregnancy." She changed her tune immediately: 'Oh, he does!' Huh? The only thing I can guess is that they are being careful with how they respond to cases of Lyme. So many doctors have lost their licenses for treating Lyme, so I can't really blame them for being cautious. (*NOTE: I have purposely withheld this doctor's name for this reason. However, if you are a parent who is searching for a doctor in the Central Florida area, please contact me. I will be happy to share all that I have learned with you, including this doctor's information.)

I had hoped the doctor would pop in and that we would have questions answered and fears abated on this visit. I had grand visions that he would be straight with us about the risks, treatment options, the chance that my kids will lead a normal life and so on. But, instead we had the PA, who was nice enough, but clearly not informed (or was just being overly cautious.)

LLMD and insinuated that we could see him next time since she consulted with him, even without a previous well visit there.

So, we left there with all of the fears we had walked in with. But, we had a script for testing...and that's what we needed most at this point. One step at a time, right?

Treating Congenital Lyme
I still have a lot to learn, but one thing I have read over and over again in my research is that there is not a cookie cutter protocol for treating Lyme Disease, in adults OR children. Every person is different - infected with different bacteria, individual immune system issues, different toxic loads, differing financial circumstances - and will require different treatments. Lyme-treating doctors often refer to each patient as a puzzle. What works for one will not work for another, so each case requires different courses of action. There is a fair amount of information on treating adults with Lyme, but very little (that I can find) on treating children with Congenital Lyme or for that matter, children who have been infected by a tick directly.

Many a parent has told me that there are two schools of thought when it comes to Congenital Lyme: 1. Treat before it is too late so that the bacteria doesn't become too deeply buried to successfully treat OR 2. Don't treat unless there are symptoms because you may 'awaken the beast.' You see, when you treat Lyme Disease, the 'bugs' die off, releasing many toxins into the system, increasing current symptoms and sometimes causing new symptoms to arise. Sometimes these new symptoms do not go away after treatment is completed, so the child is sicker than they were before they started treatment. There aren't words to describe how hopeless this makes me feel. I may have given my children a debilitating, life-threatening disease for which there is no known cure and treatment is risky, at best.

One of the doctors that has been highly successful in treating Congenital Lyme is Dr. Charles Ray Jones. Dr. Jones is one of many doctors who has fought legal battles for treating Lyme. Here is a speech he gave on the topic at the 2008 Lyme-Induced Autism Foundation Conference. Another highly acclaimed doctor in the Lyme community is Dr. Dietrich Klinghardt. Here is a speech he gave in 2009 that discusses Congenital Lyme and the link to Autism, the link to metal toxicity and more. From what I can tell, Dr. Klinghardt's treatment protocols are believed to be the most cutting edge. A good friend and fellow Lymie read that approximately half of Dr. Klinghardt's patients are children and a significant amount of those children have Autism.

The Lyme-Induced Autism Theory
As a parent, I have followed Autism research and the vaccination controversy very closely. It was fascinating to learn that there is a potential Lyme/Autism link. There is a foundation dedicated to this, the L.I.A. Foundation (L.I.A. stands for Lyme-Induced Autism) and many Lyme-literate Pediatricians, including Jones and Klinghardt, believe there is a link and that the hotly debated MMR vaccine can be one of the Autism triggers when Lyme is present. In this video, Dr. Warren Levin explains his experience with Lyme-induced Autism.

My children have both been vaccinated. I was terrified of the MMR vaccine and therefore had our oldest vaccinated for each disease individually (Mumps, Measles, Rubella), instead of all in one shot. Apparently, this is no longer an option, as the MMR manufacturer no longer offers this option. And as an added bonus, another live virus, the Chicken Pox vaccine, has been added to the MMR, our children's pediatrician offered encouragingly on a recent wellness visit with our youngest. What?! Has everyone gone insane? The MMR caused enough controversy on it's own. Now they are ADDING to it? They certainly aren't making the choice very easy for parents.

In my opinion, vaccines are risky as it is. They contain many toxic chemicals and are given out at specific ages, regardless of weight. To me it was always a choice of the lesser of two evils: vaccinate knowing there are risks or don't vaccinate and hope our children do not get a dangerous illness. On this topic, Lyme changes things for me. And it should be a careful consideration of all parents, as many doctors feel Lyme is an epidemic and many, many people are not aware that their vague symptoms are actually Lyme.

Worrying for Good Reason
I still have a lot to learn. I still have so many questions. I still don't know if my children have Lyme and if they do have it, I don't know if they will live a normal life because of it.

Some may say, "Why are you worrying about this when you don't even know if they are positive yet?" Well, if you are a parent, surely you understand the fears I am experiencing. Even if you aren't, surely you must understand. These are my children, who I would do anything to protect. And this is one 'boo boo' I may not be able to make better.

A few family and friends have recently reassured me: "Parents give things to their kids all the time...Scoliosis, Cancer, short stature, bad teeth." While I appreciate that logic, if my children do have Lyme, the spirochete (corkscrew-shaped bacterium) could be 'eating away' at their brain, their heart, their muscles, their nervous system as I type this. They could wake up one day paralyzed or unable to stand without blacking out (two cases I have learned about in my research). They may spend their lives fighting a disease that is evasive and difficult to treat. They may become aware that they are 'different' and face social isolation from their peers. Many kids with Lyme fight depression, severe anxiety and many often contemplate and attempt suicide. Even if they show little signs, they will spend their lives on a very strict gluten-free, dairy-free, sugar-free diet, which is challenging to follow in this pizza, chocolate, carb-loving world we live in.

Every parent I have had the opportunity to speak with that has been diagnosed with Lyme, has children who have also tested positive. Their stories are heartbreaking. Tiffany, a mom I met through one of the message boards through Facebook, recently found out four of her five kids tested positive. She is waiting for the results of testing on the fifth. Helen, who I mentioned earlier, has two children. Her oldest is symptom-free to this day and is therefore not treating. The youngest, her daughter Teri, made it into college before becoming seriously ill. As Helen puts it, she was: "fine one day and down the next - and has never recovered since." Her symptoms include "severe dysautonomia - where she can't sit up or stand more than a few minutes without starting to black out, seizures, horrific headaches 24/7, heat intolerance, brain fog, chronic fatigue, bizarre neuro issues, etc." Their lives now revolve around getting her well.

Other parents talk about how their children battle illness constantly due to their weakened immune system that is characteristic of Lyme patients. Many of them are very sick from their own battle with this disease and it is all they can do to take care of themselves, let alone their children. Some call Lyme Disease a disease for the rich, because some of the treatment options cost thousands of dollars a week.

My husband's aunt was diagnosed with Lyme a few years ago and she has a child who is autistic. As far as I know, he has not been tested for Lyme, but it would be interesting to see the results, considering the research that has been done in recent years.

These are just a few of the reasons I worry. This is what is keeping me up at night. I pray my children are spared from this disease. I hope the worst they experience is having to watch me go through this. I hope that my son's chronic leg pain is just growing pains. I hope my daughter is just petite and not experiencing what doctors call 'failure to thrive.' Chronic leg pain and failure to thrive are both found in kids that test positive for Lyme. Most of all, I cling to the hope that if they do test positive, that there is a doctor who can cure them or, at the very least, make their experience better than my paranoid mind is envisioning it. In the meantime, I am researching and planning and contacting doctors that may be able to help...and researching some more.

My Plan of Action
I am depressed. I am distraught. I am frustrated. And I am a type-A personality. So, I don't sit still well. And I definitely don't give up without a fight. So, regardless of whether my children's tests come back positive or negative, I am on a mission. A mission to...

1. Eradicate this terrible disease from my family - if the kids test
positive, or my husband (I'll have to take that on in another post
entirely.)

2. Educate myself and my community of fellow parents (and anyone else who
will listen) about the risk of Congenital Lyme and how to prevent tick
bites and infection.

3. Get something substantial published on Congenital Lyme that parents and
interested physicians can learn from and act on, since to my
knowledge, there is nothing of the kind at this point. I am reading a
great book right now entitled 'Insights into Lyme Disease Treatment' by
Connie Strasheim. It is an excellent resource for anyone suffering from
Lyme, but there needs to be a book that is just as informative, just as
specific as this one that tackles Congenital Lyme and treating tick-
borne illness in children.

4. Inform local doctors who I come into contact with about the risks of
Congenital Lyme and how to educate themselves about providing successful
treatment.

5. Support organizations that are conducting research on effective
treatment of Congenital Lyme Disease.

Now, I have taken many a course on goal setting and I know that setting goals is just the first step. So, with that in mind, I have done at least one thing, taken one step, towards achieving each of these goals: I started this blog; I had our children tested for Lyme; I've researched doctors specializing in treating children for Lyme; I've contacted the publisher and author of Insights into Lyme Disease Treatment to inquire about current projects and to hopefully plant a seed; I left a message for my Dermatologist with my diagnosis and encouraged him to research it, as he may have the opportunity to diagnose many patients present with cysts and refer out for effective treatment; I met with my Primary doctor to inform him of my diagnosis and find out his stance on the disease. He informed me I did not have Lyme Disease, despite my CDC-positive test (and a request for information from the Health Department), and offered to put me on anti-depressants (true story.); I created information packets for our pediatrician, primary doctor and OB/GYN, to be mailed out in coming weeks. And I made a donation to Turn the Corner Foundation, one of the few organizations funding research on Lyme.

I will not give up. I will continue my fight against this disease, and if need be, I will teach my children to fight too. And hopefully someone somewhere is doing research that will make a difference for children fighting this terrible disease.

13 comments:

  1. You have opened my eyes to something that I had never heard of or thought about ever before. Your blog is like a window into the Lyme world. I look forward to reading further into your experiences. I will pass on your info and anything I learn to others. I hope you know how inspirational you are. You may not feel like it now but you are helping so many out there that are afraid to voice their concerns. Thank you for starting this blog.

    ReplyDelete
  2. I'm right there with you, Melissa. My youngest was denied a Western Blot, by her primary, a few weeks back. I let the primary know that I was documenting everything, and that as soon as I had cash in hand, I will get both my girls tested privately. This denial of care for our children is cruel and unusual.

    ReplyDelete
  3. Melissa,
    Your words could have been coming out of my mouth. All the fears and tears, I have felt also. It's such a terrifying journey we are on. I hope you and I can be a support for each other as we venture forward with getting our kids tested.

    If it's ok with you, I want to share your post on my blog.

    brandi

    ReplyDelete
  4. Melissa, I know how scary it is to be waiting for an anvil (forget the shoe) to drop when it comes to the health of your children. And finding support from parents dealing with the same disease can be so helpful in so many ways. It is also important to remember that while the parents you are meeting right now are in their own parent-hell (because that's exactly what it is when your children have a "boo-boo" you can't fix - no matter how old they are), the parents whose experiences aren't so severe are not on the blogs, Facebook, etc.

    When Devon was first diagnosed with NF, I went to a conference and saw the worst case scenarios (picture Elephant Man) and just wanted to run crying from the building. Fortunately, God blessed me with meeting a wonderful set of parents over lunch. Their daughter also had NF and her case was not severe. They actually told me that they don't really think about it except for her annual check-ups and when they attend the conferences. I think that was when I finally started breathing normally again. This is not to say that I don't still worry and think about what may happen, it just doesn't take me down that long, dark path.

    It's natural to be scared - I would be worried if you weren't. And you are taking this on with your usual grace and determination. Just try to keep in mind that it may not be nearly as bad as the worst-case-scenario that is going through your head right now. And if it is, you will tackle it head on, taking no prisoners. And please know that I am here for help and support in whatever form you need.

    ReplyDelete
  5. I am thankful to have discovered your blog. Thank you so much for sharing your story. My husband is fighting this battle and knowing others are out there helps! we too have been through doctor after doctor...it is exhausting and highly frustrating. Just wanted to encourage you on this endeavor and know that people are reading and you are helping people in so many ways by raising awareness. I am praying for your family and especially your children.

    ReplyDelete
  6. Debbie, I am so sorry to hear about your kids. You are so right. It is ridiculous what we have to go throught to find someone to help them. Kellie and Christine, thank you so much for your kind words. You are so right Kellie! I know you have been through this Hell too, with NF. All we can do is research, think positive, pray and fight, fight, fight for the care and respect our kids deserve. Marianna, I am so sorry your husband is fighting Lyme. Thank you for the encouragement. We will get through this together!

    ReplyDelete
  7. I hope your research has given you answers. While I don't yet have children I do understand the fear. I have been treated for the past five years and sick for seven. One treatment that I strongly recommend, especially of you aren't sure of your children's diagnosis is Hyperbaric Oxygen Therapy. There are no reasons not to give it a try. It's not a cure all (nothing is) but Hyoerbaric along with IV Rocephin literally saved my life. I know there are many treatment centers in FL that offer HBOT. If you haven't read it yet, look into the book "Oxygen Revolution". I wish the best for you and your family. Continue to pray for answers!
    Taylor.johnson@rockets.utoledo.edu

    ReplyDelete
    Replies
    1. I will be checking this out. I understand Lyme does not like oxygen which is one reason the detox baths with hydrogen peroxide are helpful. Thank you.

      Delete
    2. Thanks for the comment Taylor! I am not sure how I missed it before. Thank you very much for the info! I too will look into it! I am open to anything that helps, especially when it comes to my kids!
      Melissa

      Delete
  8. Melissa,
    Thank you so much for this blog! I was just diagnosed a month ago with chronic Lyme that I may likely have had since the 1980s, which means that my daughter, who was born in 1998, very likely contracted it in utero. Of course her Western Blot came back questionable because her body was made with the bacterium present and so no antibodies will ever form in response to the presence of the bacteria. We are in the process of getting cultures ordered for both of us (rather than antibody tests). We're told this is the gold standard to test for the presence of any bacteria. It will be quite expensive, probably around $600 each and insurance will not cover it. Even so, we feel this will be extremely significant information to have in dealing with any doctor or insurance company if there is denial that she or I could have it. My daughter exhibits almost all of the symptoms for childhood exposure but has just come off as a "problem" child. Now we know. Same with me- all of the niggling, "hypochondriac", changing symptoms over the years, but nothing that put me in bed, down for the count.
    I am also terrified what this means for her. She is 14 and in denial that there is anything wrong with her and therefore is resistant to all of the diet changes we are making, etc. I will follow your blog and check out the FB page. Thank you so much! Good luck in all of our walks with this very challenging time.
    Leslie

    ReplyDelete
    Replies
    1. Leslie, thank you so much for your comment! I am sorry about your diagnosis! It is a difficult one, but if you are like me, it is better to have answers and a path than nothing at all. I hope your daughter will come around. It is tough on them at any age, especially the diet change. The culture test sounds awesome! I'll have to look into that for my kids. Thanks for the info! Best of luck on your journey! Please keep in touch!

      Delete
  9. My 2 daughters have had lyme because I have carried it around for 25 years. Here is the saddest part... My ex used the fact that my girls had missed school to take them from me. So even with LLMD saying they had lyme I am here alone and they are with the parent who does not understand lyme. I only see them supervised a few hrs a week because I made up their illness according to the very ill informed professionals, ANYONE have ANY HELP for me? Thank God they were better before they took them but I fear it will rear its ugly head again when they get run down or a trigger happens. I wish someone could help me I feel like this is against the law.

    ReplyDelete
    Replies
    1. Elsa, I apologize! I was not receiving notifications and therefore missed your comment. How are you feeling? I am so sorry you were struggling and that your husband does not understand. This is so common, and can be devastating to a family. I hope things have improved greatly. Thank you for reading!

      Delete