posted
Had an appointment with the Doctor yesterday. I was so frustrated during the appointment I actually cried. She keeps wasting my time by lecturing over and over about no gluten or daily products. I GET IT ALREADY. We have modified our diets. I want to know where we are and where we are headed with our treatment and health. I don't need to hear about the diet anymore, for pete's sake.
Anyway, here is where we are in treatment.
Me: My Naturopath prescribed for me 200 mg daily of doxy WITH 1000 mg daily of flagyl.
My Daughter(10):
4 weeks of Berberis Formula by Genestra, followed by 2 weeks of probiotics, then repeated.
Our health:
I have been diagnosed by two other physicians with babesia. My daughter was born with congenital lyme. I can barely do anything, my fatigue is so bad. Having headaches every few days, sore muscles, blah blah blah - the usual.
My daughter has been tiring rather easily lately, and has regular headaches.
I am undecided about such a 'gentle' treatment for my daughter, as she is starting puberty and from what I've learned, congenital lyme kids usually start flaring during puberty.
I think the doxy is too low a dose, and that it should not be combined with flagyl as I have read that trycyclenes weaken the effects of flagyl.
I am almost certain that this Naturopath pretty much believes that everybody has lyme exposure, and it can be brought into remission by food alone.
Meanwhile, what's left of my quality of life is shrinking.
I have pretty much decided to go back to my original LLND, who I left because seeing her involved 4 hours of driving.
What do you think?
All comments are welcomed!!!
Thanks for being here. You are all so very good to have for support during trying times! Posts: 161 | From vancouver island | Registered: Feb 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
food alone? ain't gonna happen. wasting your time with that.
hope you find someone.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I know that taking the time to drive is difficult. We have to drive over 2 and 1/2 hours to our LLMD. Not quite as long as you but still an investment in time.
I think you are going to invest the time one way or another. Does it make much sense to continue with a doctor who does not appear to be helping you?
This disease steals enough away. You and our daughter deserve the best treatment at your disposal.
Posts: 538 | From kentucky | Registered: Nov 2011
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
I agree with Randi and Mama ... any doc who harps on your diet has to know that her treatment isn't doing the trick. (Sounds like she want to blame you instead of her own incompetence!)
200 mg doxy sounds like way too little. And you've had two other docs diagnose you with babesia? What makes you think your daughter doesn't have it too?
I would suggest you book a flight to New York and see Dr. H or someone equally as competent. Babesia is no picnic to get under control, and unless you're taking the African herb (Creptolepis sp?), there's a good chance your ND is clueless as to TBDs.
Take a look at Dr. H's speech given a few weeks ago at the Skidmore College Lyme Conference. Dr. H's patient "Leah" introduces him at about minute marker 22:00 (who was wheelchair bound by babesia), and he begins at about minute 23:00 . Judge for yourself
posted
I just watched Dr. H on that video, AuntyLynn, and it was EXCELLENT! Exactly why I feel this one naturopath just doesn't understand the disease(s).
I just talked to my original Naturopath, and what she said pretty much mimicked what dr. H says. I'm taking all of your advice and booking in with her. The drive is worth it!!
**edited name of LLMD**
[ 07-25-2012, 08:30 PM: Message edited by: Lymetoo ]
Posts: 161 | From vancouver island | Registered: Feb 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
I wish you and your daughter every success, Tickle!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Well, I stopped taking the doxy after getting sunburned in an hour of exposure on a very cloudy day. lol I just figured that I didn't want to be stuck inside all summer, not that I actually ever do anything anymore, but the doxy made me so prone to sunburn I felt like a prisoner.
I figured it can wait until after the summer.
Thanks for the information on Tinidazole. I remember reading something about that somewhere, but I can't remember where! I'll bring that up with the LLND (the good one) next time I see her!
Thanks!
Posts: 161 | From vancouver island | Registered: Feb 2012
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I still don't appreciate this ND, though, since I don't want to waste my time talking about food. I have so many questions about everything and I would prefer to have some answers or discussions about the diseases. I understand about the diet, but it is ONE piece of the healing puzzle we have to figure out.
I'm still going to see the ND that is further away. We have an appointment with her a week from tomorrow, and I talked with her for half an hour on the phone yesterday. I came away feeling much relief and quite confident about the future.
Feeling confident is important!
Posts: 161 | From vancouver island | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hopefully, both NDs you see are ILADS-educated. Even if so, you may do better with a different ILADS-educated doctor, whether a LLMD or LL ND, or both.
Clearly infections must be targeted. No diet can sure lyme, still - maybe - just maybe they are just trying to help with reminders. Maybe they are harping on it but most NDs I know are so very understanding at how hard this is.
As you sense, though, you two are not on the same page. Before leaving the topic of diet, though,
- offered here with good intention -
Just a few thoughts about dairy and gluten. If you are celiac, certainly, even a trace of gluten can cause all kinds of problems, even with the brain, for up to six months after the exposure.
For me, gluten just makes all lyme symptoms so much worse. Of course, avoiding it won't cure lyme but a good remission will be much harder with gluten, especially if celiac but maybe even if not.
I was not fully aware of that nor that gluten is hidden in so many things. It really does matter a great deal to keep symptoms - and even cellular damage - down.
I just read this yesterday. If you can just read this from an interest place - you may find this speaks to some of your symptoms:
MORE ON MILK - By MARK BITTMAN �The New York Times
Sidebar: When a lifetime of suffering, medical visits and prescription drugs can be resolved with a not especially challenging dietary change, a certain amount of retroactive frustration seems justifiable.
Not surprisingly, experiences like mine with dairy, outlined in my column of two weeks ago, are more common than unusual, at least according to the roughly 1,300 comments and e-mails we received since then.
In them, people outlined their experiences with dairy and health problems as varied as
heartburn, migraines, irritable bowel syndrome, colitis, eczema, acne, hives, asthma (�When I gave up dairy, my asthma went away completely�),
gall bladder issues, body aches, ear infections, colic, �seasonal allergies,� rhinitis, chronic sinus infections and more.
(One writer mentioned an absence of canker sores after cutting dairy; I realized I hadn�t had a canker sore � which I�ve gotten an average of once a month my whole life � in four months. Something else to think about.) . . .
- full article at link above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
I agree. If you do not trust your healer, how can you feel confident in following their advice?
Wow. Amazing you can get an appointment in a week! Lucky you!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
& WHY you need an ILADS-educated, Lyme Literate Doctor (whether LLMD or LL ND, or both) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks for insisting on the importance of a dairy and gluten free diet, Keebler. I was at the point where, being so dissatisfied with this one doctor, I was about to discount all her advice, and I needed to be reminded that diet IS important.
I wasn't aware, for instance, that the effects of gluten can last for up to 6 months after the last particle of it was eaten. LoL, I gave it a week and figured that it wasn't doing anything because we didn't notice any difference.
I believe that the second doctor is ILADS. She talks about things she's learned at the conferences, which she attends whenever she can, so she stays current.
Posts: 161 | From vancouver island | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would go with the ILADS doctor, then. There's no time to waste on someone who is not.
Just so you have this set for your personal research & reference file:
Gluten (in wheat, rye, barley, spelt, kamut and added to "Mexican" or "Spanish" rice and other flavor packets - and in many processed foods even broths in the form or barley malt);
HIDDEN SOURCES OF GLUTEN (each link has detail the others may not):
Vanguard Neurologist - A Blog by David Perlmutter, MD
New Study Links Gluten Sensitivity to Brain Failure (2007)
Excerpts:
. . . . inflammatory chemicals called cytokines are created . . .
. . . elevated levels of cytokines are seen in such devastating conditions as Alzheimer�s disease, Parkinson�s disease, multiple sclerosis, and even autism.
Essentially, the brain does not like inflammation and responds quite negatively to the presence of cytokines. . . .
- Full article and book recommendation at link above.
[poster's note: elevated cytokines also occur with lyme & other infections. So trying to keep that all under control takes a multifaceted approach.]
= = = = = = = = = = = = = = = = = = = =
Similar searches can be helpful for DAIRY & Casein, CORN & SOY. DYES & FILLERS too, should be considered -- even in Rx, OTC products and supplements.
Sites for those with autism usually offer excellent advice regarding these often problematic foods. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- All those links are intended to make life easier - for a long time I had thought I had been gluten-free but really was not due to hidden ingredients.
For instance, chapstick. Now who'd have thought I'd need to be careful about that? But chapstick and lipstick is really food, it goes into us as food does.
Back to treatment, be sure to talk to those in all area lyme support groups within a reasonable driving time (or boat trip) to any doctor you consider. You can gather others' experiences if you circle out, so to speak.
And, if you determine that you may not have a good LL doctor near you, you might consider traveling and then having the best one near you to cover the bases in between distance appointments.
posted
I'm pretty sure we are gluten free already. I eat natural foods, nothing out of a box at all lately. Ooops, did have spaghetti the other day with whole grain wheat!! I'll substitute that for rice noodles.
I also use home made soaps (I make it with natural oils and lye), and I also make our own laundry soap and fabric softener.
The milk thing is the hard one. I love cheese, I love my homemade kefir...and I don't love coconut milk kefir.
Posts: 161 | From vancouver island | Registered: Feb 2012
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