7 year old daughter diagnosed with Lyme

AWESOME!!! That will really help you both track what's going on with her. It will also serve as reminders of how far she has actually come, as you can look back and see how she was doing and compare.

UPDATING:

Three weeks of Amox. and I don't see much difference or improvement in my daughter. I mean, there is some improvement...but not as much as I expected.

Symptoms: fatigue, headaches, she has mentioned her head felt heavy a few times, feels sick after eating (but only for a minute or so), less endurance than before (she could once outrun her big brother, but now has to take lots of breaks when walking), still takes naps (after giving them up years ago), occasional sore throat, and she just described feeling pain on the side of her thigh.

Nothing is severe or acute (like bedridden with fatigue or curled up in the fetal position with headache pain). It's all subtle, but very noticeable to her and me.

Went to pediatrician today so it would be on her record that she wasn't better. They did some more blood tests. CBC is normal and others are going to be sent to LabCorp. They want us to make an appointment with an ID.

We have an appointment with an LLMD in July. Should I still see the ID? Or just drop it and wait for the LLMD appointment?

Any thoughts about the symptoms I described?

I did not like how the ped. appt. went today. I got just a small taste of what so many of you have been through for years. It was like the doctor wanted me to back down and say it was no big deal. The ped. did some "strenth" tests, like "push on my arms" (resistance), hop on one foot, etc. The weakness I described was not a sudden weakness, but a lack of endurance. An inability to hold things for a long time like she used to.
Thanks to you all and my own research, I will not back down, even if the symptoms aren't severe. They are a change. They aren't my daughter's normal. I don't know if they indicate on-going infection, or a need to convalesce, or a nutritional need because something's been or is being depleted in her body, but the symptoms mean SOMETHING.

P.S. Thanks Trav. and Rowingmom for your encouragement and suggestions about visiting grandparents! I've asked them if a time in August would work out, they are too busy in July.

I am afraid the ID appointment will only result in more of the frustration you saw with the pediatrician. They both follow CDC/IDSA guidelines, meaning they feel lyme is rare and can be quickly treated. You want to find a LLMD recommended by ILADS that will treat for as long as is needed. You also may not find any blaring inconsistencies in your daughter's routine labs. We didn't never did. Some results were either border high, or low, but nothing that would make an ID doctor take notice.

The ID doctor will try very hard to make you feel that you are doing the wrong thing by treating either alternatively, or for the long term.

Our trusted family doctor of 30 years told me that Igenex was a bogus lab and that LLMD treatment was a total waste of my time and money. We are proof that he was very wrong! The IDSA has so much to learn.  Because of our daughter's coinfection, treatment with one antibiotic was not useful.  Before seeking an LLMD she had a couple of rounds of penicillin for strep (which exacerbated her PANS symptoms).  During the first round, all of her symptoms resolved for 7 days.  During the second round, her symptoms started returning after 3 days.  By the end of the round, all symptoms had returned.

Hi there!

Personal opinion of course, but I'm all for going to the other doc too, so long as it's not a financial hurdle. Brace yourself for more annoyance, but...

You have a diagnosis which may help, if it gets you another prescription, that may help. If that particular doc isn't just a yes-man for the ped. you may get some more info at least.

I recommend taping your appt. so you don't miss anything important they may say. Including being dismissive. As for the endurance issues be quite firm that you feel a young healthy child does not become less fit for no reason.

Docs seem to lean towards a hypochondria dignosis for parents. If you can measure any change - like out running her brother vs. needing rests to walk, be prepared with that info.

If the tests they do seem senseless ask for a reason for the test. Point out that he does not know how strong your daughter was so all he can judge is how she is now. That does not cover change which is the problem which brought you here! Be a squeaky wheel.

Brace yourself for the 'antibodies mean she already fought off Lyme' argument too. It may be coming.

The notebook is a really good idea. Include temp. readings daily. Note what she ate if she gets stomach aches. Look out for moods and brain fog. Mention even fleeting pains. How many times did she need to sit on how long a walk?

I put all my notes on random paper and organizing it is taking time.

(I would love the template too please!) The idea of a graphic display of symptoms is outstanding.

A possibility for energy is a multivitamin in case she is depleted. Perhaps the ID will give her a broad panel blood test?

I posted a bit about manganese/magnesium in hemp seeds earlier. I don't know if it helps but the fact the Borrellia is Manganese dependent makes me wonder what it does to our supply.

Protein foods give sustained energy - more so than carbs which burn off fast.

Good luck.  I hear from other parents that we can win this fight!

LOL LOL LOL!! What?!?!? Seems it may be harder than one thinks - of course first you must find one of these rare types of deer, right? giggle! Then you must be able to verify that HIS name is John and that might be the hardest part if you don't speak "deer"!! giggle!

mommaklee said...
 after how today's appointment went, I could no more teach a brick wall than a doc with his mind closed off so tightly.

Exactly.  I wouldn't waste your time and precious energy trying to change anyone's mind.  The ID doctor won't change his mind until 1) he develops lyme or 2) he has a child that develops lyme.  I used to try and talk to main stream doctors, now I just have intelligent discussions with our LLMD and naturopath.  You have a lot of work to do here.  Concentrate on that.  Things will change as more and more people (including doctors) become symptomatic.

Rowingmom, if you don't mind, I'd like a copy of your excel table too. Thanks!

Someone else was able to e-mail me...do I need to do something different? Do you want me to make it show my e-mail on my posts?

Okay, I think I fixed my e-mail problem.

Thanks for the chart. It is just what the doctor should order!
I'll try to start using it this week. I'm off to read about the Embers study before bed because all this is so restful.

Actually, I have made the most amazing garden in my head while dragging my mind to peace-bringing thoughts. I have arches and ponds, arbors and rocks and fruit trees and flowers.... It's very effective as a retreat at bed time.

Good night.

Do you have both of Buhner's books on Healing Lyme and coinfections? The second, which details the effects and treatment of the bartonella and mycoplasma coinfections, goes much more into depth than the first one, and suggests the use of some newer herbals that aren't being mentioned on his website.

There is a great amount of information on the anti-inflammatory aspects of the herbs he recommends, the pathways that are addressed and dosages.

I am scheduling a consult with his associate, although she can't get back to me for a couple of weeks because she is so busy. I remember that hopeless, scared feeling. But it is really all about boosting the immune system and decreasing the inflammation created by the infections (diet and herbal supplements). Buhner says actual killing by abx runs a distant third. There is hope!

I am noticing a huge improvement in inflammation (you know - that old age feeling) as I ramp myself on knotweed. I had been using the protocol previously, but was not using the full dosages that are recommended. The proper dosage has made a large improvement. I go out and jump on our daughter's trampoline daily, just because I feel like it!

Read the second book before ordering anything. With the inclusion of the newer herbs, I will be perhaps adding more to the protocol than I had planned. Names of suppliers can be found at the end of the second book.

Aren't the books great? I am taking the new one to our naturopath this afternoon.

We don't go back to the LLMD until the end of August, and I have requisitions for CD57 and CBC, CMP to make sure all these herbs are not causing liver problems. The addition of a milk thistle supplement brought previously high liver enzymes back to normal when we first started treatment with combo abx, and our daughter has not had a problem since.

this is so overwhelming...