Tested positive for Lyme. Now what?

[Yoda]

My daughter developed a few motor and vocal tics back in December. The 4th pediatrician we went to did some bloodwork and my daughter tested positive for Lyme. The pediatrician makes it sound very simple and curable. Almost like it wasn't a big deal. 10 days of antibiotics and it will clear. I've been researching online and everything I'm reading makes it sound like the worst, most complex disease that's extremely hard to cure. We're in south Florida and there aren't any Lyme literate pediatricians nearby. I'm very lost and confused by all the information that's on the web. Im nervous to give her the antibiotics. I'm hoping someone here has some advice or guidance on this. I don't know where to start.

[aba]

I don't think any of us like the idea of long-term antibiotics -- but right now, it's one of the therapies that, when combined with other things, does give relief for lots of kids. It comes to the point where allowing the drugs is better than watching them suffer so much. That's what it comes to.

 

I'm still pretty new at this, and am currently transitioning to a LLMD myself. But I realize that there are basically 3 aspects to healing: 1) killing the bacteria/co-infections, while helping 2) immune support and 3) detoxification.

 

There is a pinned post at the top of this forum for help with lyme, and finding a doc, etc. You may have to travel for an LLMD if you can't find one nearby.

Edited April 3, 2015 by aba

[msimon3]

You are in the right place. You will find a wealth of information in this forum, and many people who are, or were, in the same situation as you.

Lyme disease is a big deal. Borrelia are exceptionally good at evading our immune system and persisting through antibiotic treatments. How we perceive and treat Lyme disease is an even bigger deal. The medical community is split -- many doctors follow a 20 year old treatment protocol that many say is outdated and does not work while other doctors point to new research and treatment protocols that they say is more enlightened and appropriate. Watch "Under Our Skin" or read "Cure Unknown" for a primer on the split and controversy.

 

Keep in mind that there is no single test that definitively says you have Lyme disease or not. The available tests have potential for false positive results and false negative results in some cases. Lyme disease remains a clinical diagnosis based on the assessment of a doctor. Therefore, finding a reputable and informed doctor is essential. If the tics are indeed caused by the infection, they may be a helpful gauge in monitoring the effectiveness of a treatment protocol.

 

It is natural to be cautious about giving antibiotics -- most parents don't want to give their child medication without considering the consequences. Certain antibiotics have more potential for risks and side effects than others. However, the risks of not treating Lyme disease need to be considered. Lyme disease can be persistent, creating chronic suffering. It can also be pervasive, creating crippling effects on health.

 

Many on this forum have had to make the same decision as you, and for that reason you will find a lot of empathy and support here. You will also find many who wish they would have discovered the cause of the disease sooner so they could treat it sooner and possibly avoid the complications of persistence.

My advice is to start the treatment recommended by your doctor, hope for the best, and plan for the worst. Search this forum for LLMDs in Florida or create a topic with that subject and ask folks to private message you with names of doctors they recommend. You may need to pay out of pocket in some cases but it will be worth it to know that the doctor is free to pursue the right treatment without influence from health insurers. As aba mentioned, you may need to travel but it will be worth it to find the right doctor and not waste any time.

[rowingmom]

If your daughter has tested positive for lyme I would investigate the possibility of coinfections.

 

DD13's PANS was caused by bartonella / babesia - the treatment of which resolved her PANS/PANDAS symptoms. Only a LLMD or LLND will realize that lyme/coinfections can result in PANS. Ours did and told me right away that if we were successful in clearing bartonella her tics, raging etc. would improve.

 

Most PANDAS treating doctors continue to focus on strep antibodies as the cause.

 

Our LLMD initially treated bartonella with abx for 2 years and recovered her to approximately 80%. I continue to treat bartonella and an underlying, negatively testing babesia with Buhner's herbal antimicrobials. It has taken 4 long years but she is now totally asymptomatic.

 

Don't be averse to treating with abx but keep in mind that:

 

1) you will need to supplement REALLY GOOD probiotics and fermented vegetables to keep the gut functioning properly, A significant portion of the immune system is housed in the gut and abx will impact immune function. This includes the antibiotic action of pesticides/glyphosate in food. Stop eating antibiotics in food, and that includes conventional grains and legumes which are dessicated with glyphosate to aid harvest, and the meat of animals that are fed conventional grains.

 

http://www.mdpi.com/1099-4300/15/4/1416

 

http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf

 

2) if you are not finding improvement with the abx your doctor choses, your daughter may have other underlying infections that are not showing up on tests. This may be because:

 

a) the doctor hasn't tested for the infection (ie your daughter may have bartonella, babesia etc. because they are known to be significant coinfections but your doctor didn't test for them. Because he has found lyme (or strep in the case of PANDAS) to be positive he will assume that lyme (or strep) is the culprit and treat only that. Lyme (or strep) treatment will not address bartonella or the other coinfections.) or because the tests that are run are not specific for the species of organism that your child is infected with.

 

DD13 tested negative for both Babesia duncani and B microti, the 2 standard babesia tests. She was also asymptomatic for it - all of her symptoms were bartonella. It was only when I trialled Buhner's babesia herbs that she had a herx (die-off reaction caused by endotoxins released from dying bacteria which cause specific cytokine (inflammation) cascades) which involved the well known babesia symptoms of air hunger, chest pressure, dry cough, large muscle (thigh) pain. It was at that point that our LLMD clinically diagnosed her with babesia and gave me the go ahead to treat with babesia herbs.

 

You will spend a lot of time researching in the next couple of years. Please don't leave the fact-finding only to your chosen doctor. It is important that you educate yourself on your daughter's illness and the reasons why her immune system was incapable of handling it in the first place.

 

Here I go - our children are compromised (and not only our children, but the many, many adults who are developing diseases like MS, ALS, Parkinsons, cancer - all with no visible underlying cause because doctors don't associate those diseases with infective organisms), not because they happened across an unlikely/improbable bacterial infection. These infections are everywhere and carried by many arthropods, not just ticks. There is a reason why some people succumb; their immune function has been compromised in some way and they are incapable of keeping bacterial numbers from overwhelming the body, and why other don't.

 

In my mind our children are compromised by:

 

1) their aggressive vaccination schedule (the metal adjuvants and other constituents result in immune-overactivation/dysregulation),

 

http://www.ageofautism.com/

 

http://www.vaccinationcouncil.org/

 

2) the antibiotic action of pesticides in food which kills beneficial probiotic bacteria in the gut resulting in overgrowth of pathogenic species which are not conducive to proper immune function/regulation,

 

http://www.momsacrossamerica.com/blog

 

http://articles.mercola.com/sites/articles/archive/2013/06/09/monsanto-roundup-herbicide.aspx

 

3) insufficient nutrition.

 

https://www.facebook.com/Dr.Terry.Wahls

 

https://www.youtube.com/watch?v=KLjgBLwH3Wc

 

It is a long, paradigm changing road; keep an open mind.

Edited April 3, 2015 by rowingmom