susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
What is the result that indicates one might be a bad detoxer? Thanks. (Have researched - cannot find - am herxing, badly).
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Keebler
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posted
- My belief is that with good liver support, this can be helped. And, while called the "dreaded gene" by Dr. S, I do recall an ILADS conference where a LLMD said, while it does make it harder, it need not be so "dreaded" and that he had just had a patient with that who recovered very well.
I tested positive for the "dreaded" DQ 4 with certain code numbers from Dr. S's lab orders.
[I also have the DQ numbers for celiac but that was a different time, different test.]
I recall talking to Dr. S about what I could do and cholestyramine (which I could not tolerate at all) was the only choice at that time. He was very much against any herb or other supplement. He may have changed in years since but, most certainly, a good LL ND will know of many options to help.
Liver support, though, would most certainly be required. A good ILADS educated LL ND (naturopathic doctor) would likely have better insight and specifics for how to work with this and win.
Susan,
you likely have all this, yet for others who may not yet have this detail:
HLA-DQ (DQ) is a cell surface receptor protein found on antigen presenting cells . . .
. . . Diseases that appear to be increased in Heterozygotes are Celiac Disease and Type 1 Diabetes. New evidence is showing an increased risk for late onset Type 1 diabetes in Heterozygotes (which includes ambiguous Type I/Type II diabetes).
95% of Celiac Disease patients are positive for DQ2 or DQ8. . . . -
**edited name of doctor**
[ 10-05-2015, 07:42 PM: Message edited by: Lymetoo ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Getting to the issue at hand, though, you say that you are "herxing, badly"
Sorry to hear that and I do think that backing down the Rx dose, or maybe the specific Rx(s) might be in order
or re-evaluating your liver / kidney support plan is urgent.
I know of some LLMDs and LL NDs who do not want their patients to herx as it's so stressful and even can be counterproductive.
I hope you can ease down on something, enhance something else . . . talk with your LL doctor tomorrow and figure out some way for this to work FOR you, right now.
For what it's worth, if you take cholestyramine, that can also cause harsh reactions so start very low and slow. I prefer other kinds of detox action that is kinder to the body.
If you take antibiotics, you might consider a different approach such as rife machine.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Porphyria is another possibility for why you are having a hard time. That's all about the liver, too, as in the liver having a very hard time with certain classifications of drugs or toxins.
Detail about porphyria is in the Liver Support thread. If you are chemically sensitive, this can point to having issues of porphyria. Very specific herbs can help but avoidance of any drugs that can trigger porphyria also vital detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Not sure where you are in Texas but this place may have some suggestions for NDs who know more about the liver. They may even know some LL NDs in your area.
They do not treat lyme, however, are very familiar with issues of detoxification support and likely are familiar enough with some patients who have also had lyme to know the extra challenges when directing you to a doctor that may be of help in your particular circumstance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Thanks. Real quick wanted to add this link:
I did the testing years ago. Cannot remember/figure this out.
For part of this I know I am:
7-3-53 15-6-51
Susceptible to mold and Lyme biotoxins.
That would be bad enough - but I thought there was more - in general being a bad detoxer of many more things. ???
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Keebler
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Member # 12673
posted
- Good or bad "detoxifier" may not just be in the genes as so much is determined by damage to the liver from things we encounter via environment / infections.
When the liver is damaged, it is just harder to manage toxins. Lyme, itself, can damage the liver. So can just about any infection.
And so many pharmaceuticals can also damage the liver, especially the OTC products that contain acetaminophen.
So, we just do the best we can by avoiding what can damage when possible (and liver support to help when we must take a pharmaceutical that is hard on the liver) . . .
good sleep (and dark) helps the brain detoxify . . .
we can provide nutrients that help the cells of our liver and help cells for whole body, other wise self-care, key support methods and being as on target as possible against infections -- but that does not necessarily mean hard and fast action as that can be too harsh so we have to gauge what is best for each of us. Consistency matters.
Avoiding ALL scented products, plastic food containers, household & lawn chemicals, busy roads during high peak traffic, and so many other things also matter in how well a body is able to handle toxins.
By controlling what we can, that at least helps a little with what we can't. -
[ 09-29-2015, 02:49 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Thanks Keebs.
I think blood chemistry panels show liver function? The ALT or the AST? Mine are always normal. How can that be? Are there other tests that reflect liver toxicity - or whatever that would be called. ? Tks.
I swear I feel toxic. None of my tests reflect that.
And FWIW I am having terribly dryness issues. My eyes are killing me - so painful, lids swelling. My mouth is dry. My skin is dry. I have dried up.
The past months I have been getting weekly infusions of normal saline and Mag. Sulfate. Alternating IV VitC and Multivitamins. Also weekly IV Glutathione pushes of 600 mg.
I was feeling a bit herxy as time went on. Then I added - stupid I guess - Rocephin. Small doses IM. That put me over the edge. At last I think that is what has happened.
I need to do some serious detoxing. Particularly as I remembered my HLA results - that seem to say I am of the group that difficulty handling the toxins from Lyme die-off.
Another curious thing - discussed before - is in the past - the first time I try something new - I would feel better. Not expecting it but surprisingly better. That happened with my first Bicillin shot. My first IV Rocephin infusion (for resp. infection). First time with Glut. First time when drank some sea salt with VitC. There are more examples. Perhaps Doxy.
Lately - it has been the opposite. The things that I thought were going to help - now make me so sick.
I have to wonder - is the Lyme worsening, a herx, toxic from die-off, aseptic meningitis, serum like sickness? Or a Sjogrens flare - of which I have tested negative for so many times - and caused - coincidentally by new treatments?
I am realizing that so many of the things I use to help - are synthetic. The vitamins. The Mag? Have I become so sensitive that I cannot tolerate anything that is man-made?
Like I should eat a real orange vs taking a VitC capsule.
When fatigued - exhausted - so tired- one tends to eat what is easiest. Do what is easiest.
I should eat better things. I don't have the strength to do that. Sorry am writing so much. I should be in bed.
Thanks again.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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TX Lyme Mom
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posted
SusanK, You might be focusing too much on HLA DR DQ genetic test results to explain all of your detoxification problems, but you are overlooking another very important aspect of detoxification -- namely, the MTHFR gene and methylation cycle polymorphisms (defects).
This will open up a whole new world for you which involves a different approach to detoxification based on an individualized nutritional plan of supplements plus special foods to avoid (such as MSG or foods high in sulfur, etc.)
Since you are from Texas, one of our newer ILADS doctors is a functional medicine doctor who claims that all of her Lyme patients have genetic glitches with their methylation cycle and that this is why they cannot detox Lyme (or mold) toxins properly.
First she instructs her patients to get the $99 genetic test from 23andMe and then to run their test results through a web-based interpretation program for $30. Then she helps patients to address their unique genetic detox issues, which can be pretty complex and confusing without someone experienced to guide you. (links below)
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Tks. Would like to know about a functional medicine doctor in Texas. PM?
It's been over a week since my last Rocephin injection and I still feel dreadful. I was only injecting a gram per week. I guess I am herxing from that? Still?
I am having horrible head problems - pressure, cognitive, my eyes are worse - can a herx do that? If a herx is all symptoms worse - then probably a herx? I guess is why I am re-visiting the HLA stuff. I had been off Abx for months - then started at low dose Doxy - then switched to low dose Roc. Maybe a huge amount of Bb in me and I killed off a few? Have been dizzy and nauseated - went to ER - brain CT scan normal/blood normal.
The dry eyes (and mouth) - really really bad - makes me think Sjogrens. For some reason that disease gives me the willies and I do not want to have that one. FWIW my HLA results show I am not in the gene group susceptible to Sjogrens.
Anyway, I am fairly certain I was tested (blood - Labcorp)for the MTHFR mutation and was negative.
Recently I was tested (saliva) with Primex - a Pharmacogenomic test. The CYP part I show some abnormalities- but I thought that BetaLactams (ie Rocephin and Penicillin) were not "processed" through the CYP pathways?
The Primex test has a Thrombophilia panel to include: MTHFR C677T/A1298C - Wild types
Results: normal
Is this correct - for our purposes MTHFR test?
I def. will be working on detoxing.
I am so sick - seems something wrong with every body part - don't know how I can still be alive.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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TX Lyme Mom
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posted
SusanK I sent you the doctor's contact info via PM. Here's a little more info about her, based on recent feedback from another Texas Lyme patient.
She instructed the mother of an autistic Lyme child to get genetic testing done via 23andMe (only $99, no prescription lab orders required) and then to run the results through an on-line computerized interpretation service (link below) for an additional $30. www.23andme.com www.MTHFRsupport.com -- Click on Sterling's App. in menu at top of page.
This yields pages and pages of genetic information, including info on the entire methylation cycle, far beyond just the two MTHFR genes which other labs test for. It also includes valuable info on detox SNPs and on blood hypercoagulation (clotting) issues and on many other important health issues, so this is a very good value for the money.
(However, beware that 23andMe's genetic data for celiac is very incomplete, so do NOT rely on it for ruling out celiac! Not many folks are aware of this important detail, so do not be misled by it.)
The amount of genetic information available from 23andMe is overwhelming and therefore very confusing. That's why it's helpful to have someone experienced to help you understand it and who can help guide you so that you can compensate for your genetic "defects" -- polymorphisms, to be more accurate -- in order to start feeling better.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
I don't think the HLA DR test for biotoxin problems is worth the money. Dr S did an especially seedy thing in stating biotoxin susceptible haplotypes make up 24% of the world population, but that 90% of his patients have them. Other LLMD's in the US have reported the same thing. Well the reason for this is HLA DR is strongly associated with ethnic origin, and accordingly almost 90% of Americans and Europeans have susceptible haplotypes. Dr S is too smart for this to have been an accident. He's allowing people to highly overvalue this aspect of his work. It may not be relevant at all.
I know biotoxins are a huge component for a lot of us, and some of Dr S's treatments are great, but in my opinion this test is a waste of money. I too blew $600 on it.
**edited name of Dr**
[ 10-05-2015, 07:46 PM: Message edited by: Lymetoo ]
Posts: 65 | From Montreal | Registered: Nov 2011
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I feel as toxic as you are saying, susan. And I have Sjogren's also. My eyes get really bad when I overeat salicylates and I feel toxic.
I'm beginning to think it's related to several drugs I take and to my taking curcumin.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TX Lyme Mom
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LymeToo, I assume that you already know about the Feingold Association, but in case not, then you will want to check it out. It contains tons of very detailed info on salicylates. http://www.feingold.org/Posts: 4563 | From TX | Registered: Sep 2002
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posted
Yes, I know about them. Thanks. I wondered if you had any comments on the thread I posted .. either you or Susan.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TX Lyme Mom
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quote:Originally posted by Lymetoo: Yes, I know about them. Thanks. I wondered if you had any comments on the thread I posted .. either you or Susan.
LymeToo, I'm not sure what topic you are referring to. I don't spend much time at Lymenet these days, certainly not as much time as you do. I visit Lymenet primarily to do occasional searches and when I do that, then I might click on a topic or tow with interesting subject headings. I did a search of your profile and recent messages, but I still wasn't able to figure out what topic you had in mind.
I'll be leaving for ILADS early Tues -- two days early, one for sightseeing and one to attend the Fundamentals Review course on Thurs. -- so unless I can figure out which topic you are referring to before I leave town, then please understand that I'm not intentionally ignoring your topic.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
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LymeToo, I think I just now figured out that what you mean was "link" instead of "(topic) thread".
Yes, I saw that link and I printed it out to study later. In fact, I've saved a whole lot of your links (on histamine intolerance, etc.) in a think pile of things to study in more depth later, when time permits. Too busy right now to do anything more than just skim through all of them.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Thanks .. I think it's interesting because I have the same issue as Susan. My liver function tests are "fine" but I feel toxic when I eat the wrong things.
My liver can't process salicylates is what I think.
(sorry I used "thread" instead of "link!")
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Marnie
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posted
Google: HLA DR4 TUDCA
TUDCA is taurine + a bile acid. It is available on Amazon.
TGR5 is the TUDCA receptor and it increases cAMP which in turn impacts ABCA1 - cholesterol export.
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