I just want some sleep

[peglem]

This past week, Allie has not been sleeping much. I give her the stuff that usually does the trick (melatonin and valerian root) and she falls asleep for about 2 hours, then she's up for the rest of the night. This morning she has a runny nose and a fever. DANG! Not sure how much longer I can keep this up. I even tried the extended release melatonin-no help there. She's got this obsession with lids to travel mugs right now, and I think its happening even in her sleep because as soon as she wakes up, she's at the lids immediately, even though she takes them to bed with her. I can't even think straight right now....

[kimballot]

Peg - so sorry to hear this. Perhaps this illness that you are now seeing is what is underlying the problems Allie has been having lately. Do you think the doc would reconsider rifampicin with the current symptoms?

[peglem]

Peg - so sorry to hear this. Perhaps this illness that you are now seeing is what is underlying the problems Allie has been having lately. Do you think the doc would reconsider rifampicin with the current symptoms?

We saw him Wednesday. Overheard a conversation he had w/ one of his partners (she was not kind!). He came back in the exam room to explain and Allie whammed her head really hard on the wall. So he said (because of the wham) that he is not going to refuse treatment just because of what other people think. He's getting w/ the immunologist and has promised "a protocol" by Monday. He was trying to find evidence of what the rifampin is treating (must be something since she improves so dramatically), but we haven't found anything- IVIG makes checking hard. So, hopefully there'll be something tomorrow, and she's scheduled for IVIG this Thursday.

[Megs_Mom]

Maybe you should test her for Lyme/Tic Born Disease - even an equivical result would get you the rifampin, I would guess. Or did you already go this route? We did testing through Spirostat for dh, and it does test for babesia as well if you request.

[peglem]

Maybe you should test her for Lyme/Tic Born Disease - even an equivical result would get you the rifampin, I would guess. Or did you already go this route? We did testing through Spirostat for dh, and it does test for babesia as well if you request.

My understanding is that lyme testing is IgG based. W/ IVIG every 28 days- we cannot get an accurate result. Am I off base w/ this?

I'll see what her doc has for us tomorrow- we may be getting the rifampin afterall.

[momcap]

Sleep deprivation is the worst. I hope you get a good night's sleep soon! Poor Allie waking up with a fever. That's usually how it goes for us too - behaviour goes haywire and then sure enough he ends up with a fever. Good luck on Monday! I'm glad your doc is working so hard to help her.

[Megs_Mom]

Maybe you should test her for Lyme/Tic Born Disease - even an equivical result would get you the rifampin, I would guess. Or did you already go this route? We did testing through Spirostat for dh, and it does test for babesia as well if you request.

My understanding is that lyme testing is IgG based. W/ IVIG every 28 days- we cannot get an accurate result. Am I off base w/ this?

I'll see what her doc has for us tomorrow- we may be getting the rifampin afterall.

Igenex is, I think. But spirostat tests for DNA of the various tic pathogens. So I don't think ivig will affect it, but maybe call them and check? They are a newer lab, but our llmd is really impressed with their sensitivity and how many pathogens they test for. They also have a mold and fungus panel. Hope you get it either way!!

[PacificMama]

My understanding is that lyme testing is IgG based. W/ IVIG every 28 days- we cannot get an accurate result. Am I off base w/ this?

I'll see what her doc has for us tomorrow- we may be getting the rifampin afterall.

 

The standard Western Blot panel run through Igenex labs is IGG and IGM. It is $260 for these two tests. You can also do PCR by urine (dna). For western blot, it does not matter that you’ve done IVIG, or if you are on abx. For PCR, it is usually required that the person be off abx for a certain amount of time.

 

It breaks my heart to see that you would almost have to beg for abx from your ped, when it is obvious that your daughter is abx responsive. I don’t know what infection(s) she has, but it seems obvious that she has something bacterial in nature when she clearly responds to abx treatment.

 

I am just going to once again put out the word that you do NOT have to have lyme to go see a llmd. They are just regular doctors after all. They are simply doctors who are skilled in treating tick borne infections, and all the infections that sometimes go with them. Lots of times there is no actual borrelia infection. These docs are sympathetic… you do not have to beg for abx! They will run a panel of lab work based on your daughter’s history. They will do a thorough exam. They will listen to what YOU have to say about your daughter. These are doctors who will treat for an infection if that’s what they believe your daughter has.

 

I also want to add that probably every llmd treats children who have been given an autism diagnosis. Most of the speakers at the ILADS conference last week talked about infectious based autism. So they treat it based on that understanding. And I have heard wonderful healing stories. I believe that many of them would say that they believe there is an infectious component behind all autism diagnoses.

 

Here is the link to Arizona lyme support association – they can help you find a doctor:

http://www.azlyme.org/

 

Also, see this link on finding a doctor.

http://www.latitudes.org/forums/index.php?showtopic=10543

 

 

Mary

[peglem]

Thank you, Mary. I do want to clarify that my daughter is on treatment dose zith- its just the rifampin that has suddenly created all this "interest" from otherwise disinterested parties. My daughter has seen most of the doctors in the practice in the past. Not a one has done anything to help her. Its vexing that they put such energy into making sure her doc doesn't help her, and so little energy into improving her condition. But, w/o her doc, I have no help at all medically.

[kimballot]

Peg - I am recalling a post of yours where you said something to the effect of "I love my daughter's pediatrician... Platonically of course!" I recall chuckling at that and thinking how nice it was that you found a doctor that you really connected with. I am sure he is very compassionate and dedicated, and I hope he finds a way to go back to the rifampin. I am reading the posts from eveyrhone, though, and am wondering if you have thought about trying a LLMD. Even though you can't do IGG testing, perhaps they could help to sort out what it is that the rifampin is helping. If you get a diagnosis - then the rifampin would be justified.

[peglem]

Peg - I am recalling a post of yours where you said something to the effect of "I love my daughter's pediatrician... Platonically of course!" I recall chuckling at that and thinking how nice it was that you found a doctor that you really connected with. I am sure he is very compassionate and dedicated, and I hope he finds a way to go back to the rifampin. I am reading the posts from eveyrhone, though, and am wondering if you have thought about trying a LLMD. Even though you can't do IGG testing, perhaps they could help to sort out what it is that the rifampin is helping. If you get a diagnosis - then the rifampin would be justified.

That's a good idea. It might help her pediatrician keep in the good graces of his partners. I feel bad that he has to go through this crap to help my daughter.

[matis_mom]

This past week, Allie has not been sleeping much. I give her the stuff that usually does the trick (melatonin and valerian root) and she falls asleep for about 2 hours, then she's up for the rest of the night. This morning she has a runny nose and a fever. DANG! Not sure how much longer I can keep this up. I even tried the extended release melatonin-no help there. She's got this obsession with lids to travel mugs right now, and I think its happening even in her sleep because as soon as she wakes up, she's at the lids immediately, even though she takes them to bed with her. I can't even think straight right now....

You must be exhausted! The only thing I can think of is magnesium... If I'm jittery and can't sleep, a couple of calcium/magnesium pills usually do the trick. I never knew why. Now I'm learning Lyme Disease eats up all your magnesium, so it's really important to supplement. A lot of it at once can give you the runs, but start slow and see if it helps. I definitely can't hurt!

Let us know how things progress... did they change her abxs yet?

[MomWithOCDSon]

You must be exhausted! The only thing I can think of is magnesium... If I'm jittery and can't sleep, a couple of calcium/magnesium pills usually do the trick. I never knew why. Now I'm learning Lyme Disease eats up all your magnesium, so it's really important to supplement. A lot of it at once can give you the runs, but start slow and see if it helps. I definitely can't hurt!

Let us know how things progress... did they change her abxs yet?

Kirkman Labs makes a 2 mg. magnesium/melatonin capsule; perhaps this would help?

 

Hang in there, Peggy! We're thinking of you and your DD!

[PhillyPA]

Try giving her a full dose of motrin every four hours for two or three days. I did this this weekend and it worked wonderfully. Stopped the insanity in its tracks.

[matis_mom]

You must be exhausted! The only thing I can think of is magnesium... If I'm jittery and can't sleep, a couple of calcium/magnesium pills usually do the trick. I never knew why. Now I'm learning Lyme Disease eats up all your magnesium, so it's really important to supplement. A lot of it at once can give you the runs, but start slow and see if it helps. I definitely can't hurt!

Let us know how things progress... did they change her abxs yet?

Kirkman Labs makes a 2 mg. magnesium/melatonin capsule; perhaps this would help?

 

Hang in there, Peggy! We're thinking of you and your DD!

I'm going to try that for myself!

 

And also the motrin round the clock for a few days for ds, as he has not been doing well lately... the thoughts are back