Feeling discouraged about test results. UPDATE POST #20. LYME RESULTS - Mothering Forums
 
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#1 of 20 Old 05-20-2010, 07:21 PM - Thread Starter
 
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I need a bit of a reality check, I think. Ds had his follow up appt with our new doctor yesterday to get the results of the IgG tests and stool tests. Unfortunately, the lyme test is not in yet. He had IgG antibodies to about 30 different foods. On one hand, I am not surprised as we already know he and I have leaky gut and I realize that some of these could be foods I am reacting to and he is getting my antibodies through breast milk. I was just dismayed to see so many. Especially since he is doing so well right now. He hasn't reacted to anything for maybe 3 weeks or so. He hasn't been reacting to sals either at all. (wonder why this is?) He has no eczema and is sleeping great. He pooped for the first time in more than 18 months without some kind of laxative last week. He is still only pooping every 4 to 5 days which is not good but better than the previous 9 to 10 days. I was feeling so good before I went to that appointment because he is doing better and now I feel discouraged. His doctor thinks we really should modify our diet to full gaps. Currently, we are avoiding all IgE (soy, fish, eggs, corn) and dairy and eating only 1 gf grain per day. We are eating other starches (ie potatoes, sweet potatoes, beans) but avoid processed sugars. We do eat maple syrup in limited quantities. I am just having a hard time imagining going further than that. Part of me says just look at his symptoms and since he is doing better, continue on this path. The other part wonders if we will ever be able to completely heal if his gut (and mine) keep getting exposed to the starches that are supposedly damaging. His doctor thinks we will continue to see slow progress on our current diet but may not see complete healing or it will take longer than if we just go full gaps now. We already avoid sooo many foods I can't imagine that he can not have his gf oatmeal in the morning and his occasional sweet potato or whole grain rice or rice pasta...all of which he really loves. I don't want to sound whiney, but maybe I am whining a bit. She does not suggest avoiding any of the IgG unless we are seeing symptoms. He is eating all of the foods on the list and currently at baseline. So what to do? Should I bite the bullet and go for the full gaps and drive myself nuts? Or should we continue as we are for awhile and see how he does?

Btw.. the stool tests were mostly within normal limits except he does have a fungal component there that should not be (not candida though). I'd have to look it up to see what it was called. There was one other marker that just confirmed leaky gut. This was all kind of over my head and I have to look at it further to understand it more.

We also did a lyme test for him because I had lyme last summer while nursing him. I was treated (maybe not well enough, though according to the doctor) but she is concerned he may have been exposed to lyme through my breasmilk from the time I was bitten until I started treatment. I am chosing at this point to just keep reassuring myself that it is very unlikely that this happened and am glad we tested. Since her office is closed on Friday, I won't have any chance of getting the results until Monday at the earliest so this is how I have to think about it right now.

Thanks for listening to my ramble. Just feeling discouraged and worried and needed a few understanding ears to listen.

just remembered a plus... the IgG test said he is not reactive to dairy so maybe we could trial some milk kefir or butter or something yummy like that.

jen

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#2 of 20 Old 05-20-2010, 07:56 PM
 
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Only pooping every 4-5 days is still a symptom (and was our sals reaction). Can you post the foods he tested positive to? And was it mild positive, or more severe? Often people rotate mild positives (eat once every 4 days). But I think really restrictive diets can create problems too, particularly in terms of running down on nutrients.

If starches are the issue, you could try some digestive enzymes that are targeted specifically at starch digestion (e.g. enzymedica makes a product called carbgest).

I personally am a fan of taking in tests as information, but also taking in how my child is doing, and trying to add things to address issues, rather than subtract them.

Also, post what the stool test showed - some things, like kliebsella, can mess with starch digestion. And did the stool test show good numbers for the beneficial gut flora?

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#3 of 20 Old 05-20-2010, 08:44 PM - Thread Starter
 
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I have always thought of his slow pooping as a symptom of damaged villi in the gut meaning everything moves slowly and not necessarily a food reaction but maybe I need to rethink this.

3+ Foods
apple
apricot
banana
cranberry
grape
grapefruit
lemon
orange
raspberry
asparagus
avocado
cucumber
sweet potato
tomato
buckwheat
corn
peanut
pinto bean
rye
soy
walnut
wheat
honey

2+
blueberry
pear
pineapple
plum
brocolli
celery
garlic
green pepper
onion
string bean
cod
chicken
kidney bean
oat

there are also a number of 1+ and very low but won't list them right now

stool test

again I am confused about all of this but here goes...

chymotrypsin was low .2
beneficial SCFAs high 57.4

everything in the absorption section is within normal range

the microbiology section

lactobacillus No Growth (this alarmed me...Why would this be?)
klebsiella was 4+

mycology (I think this is the fungal part)
rhodoturula species 1+


Does that make any sense to you?

thanks for your insights!

jen

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#4 of 20 Old 05-20-2010, 09:29 PM
 
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Yup. I personally would start a probiotic with very good upper GI species - having none of those would make a mess of trying to digest any fruits or grains. And kliebsella would be the natural result (they invade when there is no lactobacillus, and eat the starches and produce some byproducts that are bad for leaky gut).

I think Kathy's son was also missing lactobacillus, so you might ask her what probiotics she used to address that. Did the stool test recommend some natural antifungals to use against the kliebsella?

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#5 of 20 Old 05-20-2010, 09:51 PM - Thread Starter
 
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nak...he's taking mindlinx and i thought this was the reason he was doing better. need to refresh which strains are for the upper gi.

the stool test recommeded plant tannins as well as berberine, oregano and uva-ursi as natural agents to get rid of klebsiella. his doctor prefers the plant tannins so recommended a supp called viracin it has plant tannins, zinc, and l-proline.

she also recommended another supp called interfase. I don't have this one yet as it had to be ordered. I guess it is an enzyme supp. i noticed though when i goggled it that people with egg white allergy should "consult their hcp" before taking. he is IgE to egg white (2.4 on this most recent test). I guess we have to skip that. what else to take in place of this?

also, his zinc was low on the blood test. don't know the value, need to get the copy of those blood test results. i suggested this as causing low stomach acid. she agreed and thought we could supp zinc but wanted us to continue with the betaine hcl. however, i am slightly uncomfortable with this and almost never remember to give it to him. she really thinks it will help though. i am not convinced we need to do both.

Thanks again for your thoughts...

jen

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#6 of 20 Old 05-20-2010, 10:28 PM
 
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Well, I wouldn't take the interfase - for the egg whites issue, but also it has EDTA, which is a chelator. And it chelates minerals, as well as metals (so it can deplete calcium quite quickly). The rest of the stuff is an enzyme blend - I'm not a big fan of the "biofilm" theory, so I'd just use something like Candidase or a strong protease enzyme along with the viracin or oil of oregano (the idea is you take something to eat the cell walls of the bad bacteria and then the antifungal to finish the job).

If Pharmax is working well for him, you might try the intensive formula, or just more of the mindlinx (it's got several good lactobacillus strains in it, so it's not good that you're still seeing no lactobacillus grown) - how much are you giving him?

I'd also supp zinc, but start a general purpose enzyme as well - we used digest gold (I opened and sprinkled on food) - that will help with the bacteria until you get his zinc levels up.

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#7 of 20 Old 05-20-2010, 10:39 PM - Thread Starter
 
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well i guess i should clarify... he had started the mindlinx i think about 2 days prior to starting the stool test and then had to be off of probiotics for the duration of the test. since it took him 13 days to poop 3 times that was quite a stretch without probiotics. it is since going on the mindlinx after the stool test that i have really felt he has improved (no reactions, no eczema and easier pooping) he has been taking 1/2 capsule 1x per day and just today i started him on 1/2 capsule 2x per day. we had given him the intensive but he reacted to the fos.

i definitely do not want to chelate metals or anything else. i will look into an alternative to the interfase.

have to put these kids to bed (that's me jumping for joy when they are all asleep!)

jen

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#8 of 20 Old 05-20-2010, 10:44 PM - Thread Starter
 
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Originally Posted by mamafish9 View Post
I'd also supp zinc, but start a general purpose enzyme as well - we used digest gold (I opened and sprinkled on food) - that will help with the bacteria until you get his zinc levels up.
i missed this part before... so are you saying skip the interfase and instead do something like the digest gold and zinc (how much zinc? i asked his doctor and then we started talking about something else and i never got an answer) i don't know much about enzymes so don't know the difference between them. hopefully will have some time to do some general goggling later.

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#9 of 20 Old 05-20-2010, 10:54 PM
 
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Honestly, if you've seen lots of improvement since starting the mindlinx, I'd go slowly here. Upping the mindlinx sounds good. And I'd start supping zinc, so that you improve his stomach acid. 10-15mg a day would be good, ideally with food and split into 3 doses or so (will he swallow a small capsule, zinc isn't that tasty, and probably neither is the viracin). Or you can do a liquid zinc, most of them taste better. In the meantime, you can try some digest gold (it's easy to find in most stores) - open capsules and start with a sprinkle on food, it's pretty strong. See if it helps improve his poops.

After a month or so on the zinc, enzymes, and more probiotics, if the test is covered by insurance, redo the stool test. It could be that is enough to really improve the situation! If not (or if you have to pay for a new test and that's out of reach), then I'd do couple of weeks on a low dose of the viracin, or oil of oregano and see what that does for him. But we found there wasn't much point in doing the antifungals until we'd improved the overall gut environment (low stomach acid results in messed up pH in the gut, undigested food traveling through - so even if you kill some of the bad guys off, you'll just get more).

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#10 of 20 Old 05-20-2010, 11:42 PM - Thread Starter
 
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thank you, it's a lot to "digest" (sorry)! also, i know that candida traps mercury and if you kill candida it can release the mercury into circulation. we did a hair test on him did not appear that he has metals issues (except for elevated aluminum). would killing off this fungal component (rhodoturula) result in the possibility of releasing stored metals? don't think this is an issue for him but just want to know before we dive in. what do you think? thanks for your insight on "going slow" this is the approach I would rather take too. I am apprehensive about adding too much to soon. He is doing well right now and I don't want to rock the boat but do want him to continue to improve.

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#11 of 20 Old 05-20-2010, 11:49 PM
 
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Possible metals is a great reason to go slow. He doesn't seem to have candida issues, but if you just keep working on slowly improving the gut environment, any metals or other toxins released will do so more slowly, giving his body a chance to respond. You can always go to the antifungals down the road, but it sounds like you have some nice steps to take to keep making progress without getting too aggressive just yet.

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#12 of 20 Old 05-21-2010, 02:21 AM
 
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Whoa what a big list. Hugs!

I agree about having a BM every 4 days isn't a good sign. I freak out if my kids don't go every day. I would cut out those foods just for a little wile as perhaps these foods are showing up due to inflammation? Perhaps if you get off them and then trial some later after things calm down they may be fine.
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#13 of 20 Old 05-21-2010, 02:22 AM
 
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Do let us know how the lyme test goes as our allergies are way less after treating lyme. It can really mess with digestion.
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#14 of 20 Old 05-21-2010, 02:29 AM
 
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Looks like greens, strawberries and mangos are not on the list. Carrots, seeds, rice and lentils too. There is light at the end of the tunnel...

If these foods are showing up from inflammation, then adding omega oil can help. There are other options besides cod luckily.
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#15 of 20 Old 05-21-2010, 09:06 AM
 
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Originally Posted by mamafish9 View Post
Yup. I personally would start a probiotic with very good upper GI species - having none of those would make a mess of trying to digest any fruits or grains. And kliebsella would be the natural result (they invade when there is no lactobacillus, and eat the starches and produce some byproducts that are bad for leaky gut).

I think Kathy's son was also missing lactobacillus, so you might ask her what probiotics she used to address that. Did the stool test recommend some natural antifungals to use against the kliebsella?
For my DS, he had no lactobacillus either (and he'd been on probiotics for a year and a half before the test), Klebsiella was a 3, Citrobacter was a 4. He's on TruFlora in the morning, and 2 digestive enzymes at night. He went from pooping every 4-5 days to pooping every day on that regimen (and avoiding his problem foods).

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#16 of 20 Old 05-21-2010, 10:23 AM - Thread Starter
 
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Looks like greens, strawberries and mangos are not on the list. Carrots, seeds, rice and lentils too. There is light at the end of the tunnel...

If these foods are showing up from inflammation, then adding omega oil can help. There are other options besides cod luckily.
You are absolutely right! I could make a much bigger list of foods that are safe for him and it is much less overwhelming to look at that list. Thanks for reminding me to look at the glass half-full! He had been taking FCLO without a problem (that I could see)....

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For my DS, he had no lactobacillus either (and he'd been on probiotics for a year and a half before the test), Klebsiella was a 3, Citrobacter was a 4. He's on TruFlora in the morning, and 2 digestive enzymes at night. He went from pooping every 4-5 days to pooping every day on that regimen (and avoiding his problem foods).
wow that is encouraging! do you remember how long it took on that regimen to see a change in his poops?

also i was a bit confused last night. since klebsiella is a bacteria not a fungus it seems that nothing on his current supps list is antifungal. the viracin is a natural antibacterial (right?) don't know if killing klebsiella is a risk for circulating metals (or that he even has metals to circulate) just want to err on the side of caution

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#17 of 20 Old 05-21-2010, 01:08 PM
 
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wow that is encouraging! do you remember how long it took on that regimen to see a change in his poops?
Less than 3 weeks. Because he was seeing the doctor every 3 weeks at the time. The first time the osteo did a CST-type treatment on him, he went to the bathroom while I was paying the bill, and pooped. I was amazed! He's been adding more foods in since the right probiotic and enzymes, even foods that had failed before (like rice and guar gum).

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#18 of 20 Old 05-21-2010, 07:23 PM
 
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Lordy, if my son goes 2 days w/o pooping he is a mess!

Given the age of your little man and the fact that his bowels are so slow (lower gi probiotics influence transit time as well) I would be supplementing him with higher amounts of bifidobacteria. Was the bifido level on the stool test?

Intensive capsules do not contain FOS.
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#19 of 20 Old 05-21-2010, 08:53 PM - Thread Starter
 
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Lordy, if my son goes 2 days w/o pooping he is a mess!

Given the age of your little man and the fact that his bowels are so slow (lower gi probiotics influence transit time as well) I would be supplementing him with higher amounts of bifidobacteria. Was the bifido level on the stool test?

Intensive capsules do not contain FOS.
the bifido was 4+... that's ok right? do you think he still needs more bifido?

I can't remember why I settled on the mindlinx capsules versus the intensive capsules. Maybe I wanted the l glutamine. Maybe I was thinking the intensive capsules were too much and would be harder to dose. Maybe I was wrong but the mindlinx seems to be helping things. His doctor did want him to take l glutamine too and since it is in the mindlinx he doesn't have to take extra. I just bought 2 more bottles of mindlinx so I guess we will stick with that. I just increased his dose yesterday so hopefully that will help.

No lyme test yet. Now we wait until Monday (or later) for sure.

I really appreciate all of your input as usual. Any other tidbits of insight you all have I will gobble up. I am feeling much more empowered today and am glad I have this thread to refer back to. I have learned sooo much from all of you. Now I wish I understood more clearly what this all means about my own health. That's another thread some day...and probably a bunch more $$$ testing.

jen

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#20 of 20 Old 05-26-2010, 08:57 PM - Thread Starter
 
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my ds doc called with the lyme results... she said that his IgG was positive but the IgM was equivocal (?sp). She was not suprised about the IgG because I had lyme last summer that was treated with abx (he was/is bf at the time) and these could be my antibodies. The IgM are his alone and if they are positive then he definitely has lyme. She is not sure how to interpret the test and is planning to contact a doctor in Connecticut tomarrow to get a second opinion. She said he is the leading pediatric lyme specialist in the country. Anybody know who this might be? She said the name but my head was spinning at the time and I forgot to write it down. So I still don't know for sure but am scared atm... for those of you who have had dc with lyme, what is the treatment and was it successful? When I have time later I will go post in the lyme thread on the main health and healing page.... just needed to check in with you all..

jen

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