posted
Daughter in mid-20's with Lyme and probably Ehrlichiosis (Igenex)
Very debilitated. Worst symptoms are pain, more pain, stiff neck, and fatigue.
Her first LLMD visit is still a month away, and her PCP does not choose to join us. We did obtain Doxy. She takes 200 mg bid, has been on it for 6 weeks so far.
So, in addition to this site we've been relying on a Lyme-aware chiropractor. Here's what he's got her on.
for digestion: Pro-Biotics, especially saccharomyces boulardii Intenzyme forte pro DHA (this is omega 3 fish oil)
for anti-fungus: FC cidal Aquerus selenium GTA (also supports thyroid)
boost immune: Immuno Gg Neutrophil
support liver: milk thistle
support adrenals: ADHS
decrease pain: KappArest (it sure doesn't seem like this works, but who knows?)
fight Lyme: POA phytolens (this is cat's claw)
muscle tone: L. tyrosine and taurine (amino acids)
other vit. D3 OsteoBalance Cal/Mg powder electrolite solution added to water, as she drinks almost 2 gal. per day
So, we have 2 questions for you all, please advise
# 1. What's missing that's important?
There is no multivitamin, but she's getting vitamins and minerals from some of these other sources.
There's not much vitamin C, is this a problem?
I've got Dr. B's list of supplements, and she is not taking some of the mandatory ones.
# 2. What can she leave out? She is more than maxed out on pills, as this comes to about 50 per day. Not to mention the expense. The chiropractor won't choose what she can drop, so we will choose.
She's just starting to get diarrhea, after 6 weeks on the Doxy. So I told her to up the # of probiotics, but she says something else has got to give somewhere.
Posts: 228 | From Mass. | Registered: Feb 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Why would she drop any? In fact, I don't see any multi-vitamin or B Vitamins for that matter, as well as any minerals. This will become especially important if she continues having the runs and develops absorption issues.
I'm not sure what KappArest is supposed to do, but I do know that for Inflammation type of pain, Zyflammend (made by New Chapter - sold everywhere) indeed does work and is safe. Got me off NSAIDs when I was sick.
FWIW - I've gotten better and been off antibiotics more than 4 1/2 years now - and I STILL take more than the list you provided above each and every day. It was a critical part of my getting well, and I am committed to it the rest of my life.
I too complanined about the number of pills, and then my LLMD showed me her bag of supps she takes each day, and I shut my yap.
I'm not sure how long your daughter has been sick, but I do know that for the many who went untreated for years, you need to address the entire picture and restoring your body to optimum mineral levels is key.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Thanks Julie G. She is getting vitamins and minerals from the Cal Mg supplements. But I'll make a study of the B vitamins, not sure if she's getting enough of all of them.
Will also look into Zyflamend.
I suppose her unexplained weight loss would indicate mal-absorption.
She has had Lyme for many years, but led a "normal" life with some strange symptoms. She just became acute last fall / winter which is when we finally realized what has been going on.
Ok about all the pills, maybe that should be the very least of her worries. We are having trouble keeping things in perspective right now.
My concern is that we might not be on the best path for her. What if some of her supplements are useless, and other critical ones are missing?
Of course I've read enough on this board to know my doubts are nothing new.
Posts: 228 | From Mass. | Registered: Feb 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
It's tough sometimes to pick and choose, and find supps worth paying for. It seems theres tons of options for everything, but not all are equal. A few things you can pretty much buy any brand, just watch for the Lyme recommended doseage(ie Milk Thistle and Vitamin D3 come to mind), but pretty much my rule of thumb is - if they sell it in the food store, don't buy it.
I've found through digging the following brands to make reliable quality products: Solaray, New Chapter (tons of great products), Pure Encapsulations, Nutricology or Allergy Research Group, BodyWise (great program to put together an allover approach www.bodywise.com), Young Living.
BTW - she should be taking Magnesium and Calcium separately,not as a combined supplement. If it's a high dose (of Mag 200mg or more), that could also be giving her the runs. Need to take a low low dose, but at frequent intervals, so perhaps that is something you could look into. And since she's been sick a long time, Magnesium deficiency is highly likely.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I combine lots of supplements in this one protein powder combo - and also others in the green power. Both come in capsules, too, but the powders make my life so much easier. They are not cheap, but with so much combined, the price is understandable.
You can click on "supplement facts" for each of these links:
posted
well, Julie, arrrgh. I've been buying from Pure Encapsulations and Moss Nutrition, both are supposed to be highly reputable sources.
So I thought if they combined Cal and Mag I didn't have to worry about it. There's no end of what to learn, it seems.
Keebler, the powders are worth looking into, maybe that will help her success rate in getting through everything on her list every day.
Posts: 228 | From Mass. | Registered: Feb 2009
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posted
So Keebler, I looked at the ingredients on the 2 powders you suggest. It does look like it would be better than pills.
How do they taste? Daughter has gotten very sensitive to taste and odor, which was a big problem with some rice protein powder she tried out.
Posts: 228 | From Mass. | Registered: Feb 2009
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posted
Something to consider is restoring the body's cycles to pre-Lyme condition as best can be done before and during treating the infections.
This may be hard to follow, but I'll post links below. I'm having a hard time finding the full papers publicly online so if you'd like I can email them to you. If there is a way to post the files to this group and someone could direct me, I'd appreciate it. Then I'll just put the papers there.
Anyways, Borrelia (Lyme) needs cysteine to replicate. But, glutathione (our friend) needs cysteine to form itself. So when borrelia uses up our cysteine and there isn't enough to form sufficient levels of glutathione, a vicious cycle occurs. The problem can't be permanently fixed by just adding glutathione. It's a case of breaking something from the top down and having to fix it from the bottom up.
This happens because one of glutathione's many roles is to protect B12 from toxins. When there isn't enough glutathione, the B12 reacts with toxins and can not form into it's active forms.
The above causes a slow down of methionine synthase which causes a block of the methylation cycle. Once this block is established, the cycle perpetuates and glutathione can not be sufficiently produced or recycled.
This is a problem because everything that already happened spirals out to affect everything from ATP production for energy, to allowing viruses to replicate easily. The hypothalamus is also disregulated and all hormonal levels. Immunity, neurotransmitters, minerals and most of everything else are disrupted and what results is the chronic state of Lyme, which many have even after killing off all the critters. This seems to be why the symptoms cross so many lines and are often misdiagnosed.
Frankly, from my understanding, this is the same cyclical disruption that perpetuates in many chronic illnesses labeled as Autism, CFS, ME, GWI, FM, NO-OONO (10th paradigm) and probably some others I forgot. The causes, genders, genetics and ages of onset have a part in what the illness shows up like. However the chronic illnesses all resemble each other so much because they share the similarities in the methylation cycle's blockage.
This is based on the work of Dr. Amy Yasko's research into Autism, where her 2nd step is to treat the methylation cycle. A researcher, Rich Van Konynenburg, simplified the 2nd step into 5 supplements which reverse this cyclical disruption. Rich just presented two papers at the IACFS conference in Reno last month, one of which was his explanation of how Lyme can cause a methylation cycle block. His hypothesis is called Glutathione Depletion - Methylation Cycle Block, or GD-MCB for short. He has been explaining CFS with this hypothesis for a few years and the treatment of the 5 supplements has helped many to get back pieces of their lives. I really think that some of those who haven't seen more substantial benefits from the treatment have unresolved infectious issues, namely Lyme. Essentially what the treatment does is gets the body working normally and stronger again, so that as infections are healed, the body can begin absorbing & utilizing nutrients to regulate it's own levels so that folks don't need to artificially supplement.
One specific tangible benefit that was recently proven in a research study, also presented at the IACFS conference, is that the protocol resolved thyroid disregulation. This allowed many who have taken the supplements to stop taking thyroid medications.
For me personally, I've been taking the supplements for 5 months. First I noticed a return of my memory and cognitive function. Then my pain began fading. Then sleep improved and my body began fighting infections a little on it's own, for the first time in, well, I don't remember. When I prepared to treat Lyme, I considered stopping the 5 methylation cycle supplements. After a lot of conversation with veteran Lymies, my conclusion was restore the cycles AND kill the infections. This was because by increasing the body's function it will help to eliminate the evil critters much more than just antibiotics and pot-luck supplements.
Anyways, I can translate this down into more laymans terms if wanted, but translating it up into more scientific terms I leave to the author in his papers. You can find them by searching GD-MCB or Glutathione Depletion or by his name, Rich Van Konynenburg. I think I have all of his public papers on my computer, so just ask and I can email them to you.
Testing for the methylation cycle is recommended through Vitamin Diagnostics to determine if there is a such an issue. The lab is $300 and a doctor's request must be faxed to the lab first. The test results are also good to track progress. Myself, I couldn't afford the test so diagnosed myself based on other labs and symptoms. A doctor well versed in either the Yasko protocol or the GD-MCB protocol is highly recommended, but there are few and far between as of now, although this has quickly been gaining recognition, the money just isn't there in supplements for more research studies to further prove the hypothesis.
I'm not going to post the supplements on here because it would be irresponsible of me. That's because the doses are specific, actually smaller than the manufacturers recommendations. Also, I think one should at least try to understand the papers on this before treating themselves so they understand the possible complications such as accelerated detox causing very bad days.
I'll stop rambling because even if this is welcomed, it's probably a bit much to digest at the moment.
Some links are below, but let me know and I'll send the papers.
-Disclaimer - I don't make money off any of this and I'm not a physician, just a guy getting better sharing information that helped him and others get better.
posted
wow jrutty,this is great. Last night I read about glutathione in the Singleton book. I am definitely going to want more information.
There will be a delay at this end as I'm just leaving to go out of town for 2 days. Over the weekend I should have time to study your info, do some research, and then p.m. you when I'm ready to talk about it more.
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