How the heck do I get these crappy numbers down?

[minismom]

I know mini's numbers are wonderful, but I'm not sure what we can do about these dadgum stinkin' lipid numbers. 

cholesterol: 210
HDL (good stuff): 39
LDL (bad stuff): 115
Triglyserides: 281
Glucose (fasting): 89

Lipid doc said that only way to effect tris was to keep glucose low.  A fasting glucose of 89 to me is low, but this is the highest her tris have ever been.  The BEST they've been is 178 but doc wants to see them under 150.  She's been on a very strict diabetic diet since November of 2004 but these stinkin' numbers aren't getting any better.  Also, she doesn't eat fast food, she eats lots of veggies - especially raw ones, we don't fry anything, no caffeine, no sugar, extra fiber (15mg minimum/day), and 1000mg of fish oil everyday.  Is there something I'm missing? She has precious little body fat to speak of...her face is very skeletol. So, I don't get it. I'm also worried about what this is doing to her heart.  Lipid doc keeps a close eye and her valve regergitation is gone, but you hear all the time about heart disease associated w/ high cholesterol and tris.

Any suggestions would be so much appreciated.

mum

[bobino]

Hi again, Mum,

Would love to be able to help, but from the sound of things, you're doing everything exactly right.  I suspect that these lipid numbers are the result of Mini's drug combo, and I think you should solicit the views of the forum's treatment-experienced members.  Perhaps they could advise on a medication switch or other strategies.

BTW, I know that you were going to ask Mini's pediatrician about getting her off the Zerit, which is implicated in a lot of lipid issues.  What was the result of your conversation?

Best of luck.  And don't forget that your daughter is lucky to have the mother she does.

John

[vokz]

By far the most effective non-medicinal way of controlling triglycerides that I have found is to include a good portion of unrefined oats in my diet as a breakfast cereal (forget the branded Quaker Oats rubbish and the fancy expensive individual sachets .. just plain old unrefined oats soaked in whatever lower fat milk / yoghurt takes your fancy).

It can be a bit of an acquired taste, so if she doesn’t take too readily to it you can try to liven it up a bit with some chopped nuts and / or dried fruit.

(This is also good for lowering LDL cholesterol and a great way to boost the intake of soluble fibres to slow digestive transit and help firm stools and control diarrhoea).

[minismom]

John,
I would LOVE to talk to mini's PID about changing her meds.  The only problem is that after a week of leaving messages, doc mailed mini's results to us and has yet to call us back!  So, now we also get to have a repeat conversation about the common courtesy of returning phone calls.  

Jan,
Thanks for the suggestion about the oats.  We have a whole food store out here, so I'll give 'em a call and see if they have any. 

Happy W.A.D!
Mum

[minismom]

Sorry, voz, thought you were Jan.  My eyesight ain't what it used to be.  So, let me rephrase: Thank-you Voz.

Mum

[vokz]

Mum,

Don’t worry .. I don’t bruise easily

You will probably find bags of rolled oats wherever you do your regular shopping.

If you can’t find them, then an equally good (and perhaps more palatable) alternative would be an oat-based muesli (without added sugar) .. or even Granola (if the diabetes allows).

Quaker Oats will do too, but you pay through the nose for the brand.

If you can work the nuts (especially walnuts) into it too, you also provide a great natural source of those healthy omega-3 fatty acids that Mini needs.



A basic recipe you could try (and then adjust for taste and consistency):

Mix together 2 tablespoons rolled oats (pre-soaked in 5-6 tablespoons water or fruit juice .. but NOT grapefruit juice, as that can affect absorption of some drugs), 1 tablespoon lemon juice and 2 tablespoons milk or yougurt.

Top with  grated apple (prefereably a sour variety) and nuts.



Another thing I meant to ask was whether you had ever checked out Aidsmap’s booklet on ‘HIV & Children’? You might find it a handy additional reference and you can download it for free at: http://www.aidsmap.com/files/file1000886.pdf  .. and towards the end of it you will find some great online resources geared to those amazing parents supporting children with HIV.

Mark

[Smoothstone]

Is changing doctors an option? Controlling viral load and maintaining t cells are important, but so is management of side effects. Sometimes management of side effects means switching a drugs or drugs.Zerit is well known for having problematic side effects.  You made  reference to neuropathy  in another post. Zerit is notorious for causing peripheral neuropathy as well as  lipodystrophy. 

I've had to change doctors because of non responsiveness. What a difference a doctor makes. Understatement. My current doctor always gets back to me the same day, or if  he cannot, he has his physicians assistant or nurse call. He has a doctors exchange for night and weekend calls. Thanks for pushing. Hank   

 

 

[minismom]

Smooth,
changing docs really isn't an option.  there are only 2 ID docs in our state and one is currently serving in Iraq.  Usually our PID isn't like this.  Dh thinks she must've had a heart attack when i left a message about changing mini's meds since I've been so against it in the past.  I'm not quite sure what's up, but I'd like to know.  She's now 8 days MIA.  Tomorrow, her sweet nurse, Sandy, will be getting yet another phone call from your's truly.

Mum

[allanq]

I've been taking fish oil for the past six or seven months and have found that it has done a very good job in reducing my cholesterol and triglycerides. My cholesterol used to be around 300, and triglycerides were consistently over 600. Now the cholesterol is down to around 200, and triglycerides around 270. Still not the greatest, but a big improvement.

I use deodorized gel capsules from Trader Joe's. I take 6 capsules a day--3 with breakfast and 3 with dinner. Each capsule contains 400 mg EPA and 200 mg DHA.

If you decide to try this, I highly recommend that you get a brand that is "deodorized." Otherwise, you might be burping up a fishy taste throughout the day.

I also have started eating raw, unsalted almonds. I'm told they're very good for the cholesterol and they also contain a lot of protein and fiber.

Allan

[Cerrid]

My lipids went down a lot when I started exercising, especially doing the x-trainer in "fat burning" mode where you keep out heart rate a little lower but for a longer time (as opposed to "cardio" mode which is more intense).

[minismom]

Thanks so much for the advice.  Mini is already on fish oil - 1000mg / day.  We don't use the "deodorized" version, though, and it's not the burps that smell .  When she runs out of these, I'll try and find one that won't be so offensive (even though she just thinks it's funny )  Exercise is limited due to her CP.  She has been "running" up and down our hills in the snow the last couple of days.  She's also seeing a PT who gives her a great workout in and out of the water.  We go back to her cardiologist in May.  We just have to get her through Christmas which was certainly not designed for diabetics or folks w/ high cholesterol!

Moochies,
Mum