sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Just because the genetic test says something it does not necessarily mean that it's accurate or that it can't be fixed.
There is also a new study about epigenomics (or is it epigenetics?). There are factors that can influence or change genetic markers.
Many of these this that can change the DNA are simple things like eating pure foods, drinking pure water, or on the negative side inhaling molds, pesticides, or second hand smoke.
Much of the sections of the test (from what was written prior) consists of things that seem like common sense - like avoiding toxic molds, auto exhaust, cigarette smoke, pesticides, tylenol.
Probably, most every human can't handle these chemicals that are like a toxic soup in the environment.
The immune system is very delicate & requires balance. We do not thrive in a toxic environment.
Some people may be resistant but sooner or later the combination of toxic chemicals in the environment will take it's toll on even healthy people.
I'm in a situation now where the test would be prohibitively expensive.
I think if we are open we can tell which things are harmful to us without an expensive test.
It's best not to force yourself to continue with any drug, food, or supplement if it doesn't make you feel better after an initial trial period.
I don't think the test is necessary but if you can afford it - it's not a bad thing.
Just keep in mind that it may be inaccurate & not to get stressed if it says you have certain tendencies.
Genetics are a new science & not everything is written in stone.
In my experience, I felt bad when I took abx. I just don't think they are meant to be used on a long term basis.
We are all different & need different solutions to our issues.
Good luck with your treatments, everyone!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Rianna
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posted
Did your LLMD actually say AB's were POisen for you??? my understanding was that these tests just showed an inability to remove the toxins from the die-off and the antibiotic toxin itself.
I had the HLA Test and the test that you are refering to by holisticheal - I showed the genetic defect on the HLA and an inability to eliminated AB's etc on the other Genetic test.
My LLMD said he has many patients with the same readings and he just ensures he does detox with Actos/Chlorestamine and detox herbs and vits for at least 2 months and then restarts antibiotic or co-infection meds (both pharmacuticals and herbs) - he keeps you on detox protocol whilst on antibiotics as this will overide/take over from what your body cannot do (detox theses substances. But ensures he calms down the cytokine response/storm with actos whilst doing this.
So effectivly removing any toxic effects that have occured whilst taking AB's and then going a little slower and keeping detox high - He said these patients with this genetic defect get better it just takes them longer.
I have been on the detox protocol for only 1 month Actos/Chlorestamine and herbs/vits and already I am 30/40% better, I will then restart Ab's for co-infections and Lyme in another month.
posted
Good points are being made. I agree with a lot of them. Bruce lipton talks a lot about this in Biology of Belief.
To rianna, Shoemaker says 25% of people are liable to get mold. Sure take detox but what if you are living in a home with mold? Where did you get this mold from? Docs just adding CSM to their mix of supplements without tracing the source of the mold seem to me missing the fundamental point of Shoemaker that you need to get away from the source of the mold. You wont get well unless you do. If you dont have mold why prescribe CSM?
Shoemaker has his tests VCS and tests for low msh etc so they are other ways of doing this. The VCS test just costs a few dollars. If you cant afford the tests listen very carefully to your body.
What I am saying is that if you have a problem with abx its not just a genetic problem but because you have other neurotoxin problems including mold probably. wallace
Pleased to hear Luvs is feeling better!!
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Rianna
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posted
I am not taking the CSM/Actos for mold but for eliminating the Neurotoxins created by the Lyme and the die off from Lyme - If you have a genetic defect HLA test or similar then you need a protocol that will pull these harmful toxins from the body,
So CSM/Actos and supportive vitamins/Herbs enable these toxins to be eliminated from the body - This protocol is not just used for Mold it is also used by many LLMD's etc to eliminated these harmful Bio/Neurotoxins.
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Sparkle said: ``There is also a new study about epigenomics (or is it epigenetics?). There are factors that can influence or change genetic markers.''
Absolutely right! There is compelling evidence that many hereditary or genetic traits can be altered by environmental factors and passed on to the next generation. This goes against what was originally thought about genetics! Even rigid thinking or high levels of emotions like anger can actually alter our DNA and make it less able to adapt - less flexible - to new conditions or changes in the body.
There are other ways to alter inherited tendencies - like miasmatic treatment (homeopathics and other related therapies) - so we are not always `stuck' with the lousy cards we got dealt from our ancestors.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Rianna We will agree to disagree. For me docs just adding csm are not reading Shoemaker carefully enough. He after all invented this use of CSM so we need to pay attention to everything he is saying. Chronic lyme means a problem with biotoxins which include mold and the problem should be traced for as much recovery as possible.
Anyway something to consider if your recovery is limited. Have you read Shoemakers books?
I hope your new treatment gives you good results, quickly. Best wishes.
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I get intravenous glutathione every week or two and have for a few years. Its very helpful. I would suggest if you're going to get that, that you begin with a low-dose Meyer's cocktail, according to the formula used by Dr. Katz at Yale (that is done in an IV push, but you can make it into a drip if you get a small bag). My doc has the kind of IV line where down near the catheter, there is a "Y" shape, so you can stick a second IV in later without "mixing" the two liquids. He gets small 100 ml isotonic saline bags and puts the glutathione in this. Many patients get this glutathione "chaser" after their vitamin/mineral drip. Glutathione is too delicate to mix it with anything. I get 1000 mg.
It is the major antioxidant your liver uses and it also boosts the immune system. Lyme is known to oxidize glutathione and babesia oxidizes red blood cell glutathione.
I love my glutathione.
However, according to Amy Yasko I supposedly have trouble detoxing sulfates (? I'm trying to remember) and glutathione might backfire on me but so far it hasn't. However if you had trouble with epsom salts pay attention to your reaction to the glutathione (its sulfur based).
I don't like the b12.
Magnesium and b6 and other nutrients in the Meyer's cocktail are important. High dose is not necessary.
Posts: 2276 | From united states | Registered: Jun 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
That might be why my liver was so ticked off when I did abx all those years. It was trying to tell me, don't take this poison, you're killing me.
My liver and spleen used to scream. Felt like they were a punching bag. Overloaded with toxins and add some abx that my organs couldn't deal with or refused to deal with and I had....
the illness from hell. Every part of body would feel like someone has beat me with a baseball bat.
Took about 3 yrs to get the toxins in my body down to a level that my organs now only scream during a herx cycle, maybe? Except for my colon that seems to have been taken over by some unknown other bacteria????
Most likely this unknown bacteria that is controling my GI tract happened much later in my illness after another round of embedded ticks. None of these GI symptoms came about in the original illness from hell.
New embedded ticks, more crap to deal with. I'm going after bartonella now. I don't believe I will try the abx again. I think I might be able to get bart with something else in mind.
Something alternative that doesn't tick off the rest of my body, or causing a whole another issue of symptoms. I'm not going there!!!!!!! That's my thinking today. You never say never though.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Rianna,
My doctor pulled all my meds except Doxy 100mg MWF. That is a very low dose mycoplasma protocol.
She pulled plaquenil, amoxycillan, zithromax, Nizoral, Methotrexate and Enbrel (Enbrel I never started. I held off out of fear)
Her exact words were "You cannot detox drugs. I have been poisoning you".
Literally, I believe with artificial help and by not continuing to add to my load, I can detox. Just sloooowwwlllyyy.
Oxybabe, I have been on IVs of glutathione for 1 yr with my first doctor and loved them. I have only had a couple with the LLMD but she is currently giving me 4 weekly IVs and I just started the inhaler today. I think I feel a headache coming on, darn it.
Everyone else, please let me clarify I have been a success story for a long time. I was doing very well in April when the duck rheumy proclaimed me nearly dormant. Another tick (dog tick) made me dog sick and sent me to the LLMD for abx. I felt a recent infection would do best with abx care.
She found H.Pylori and treated it for 7 mths. After just 30 days, my health did a giant leap and I have not been in any pain since (except my damaged left wrist which is also improving).
So I was shocked when she found the "rheumatoid explosion" which I believe she means "in every joint". That really stunned her and me. Me because I wasn't yet feeling it and her because she had me on so many anti-inflammatories.
Hence the detox gene ability test. This test read me like a book. It explained my entire life history.
I have read before too that bacteria can damage DNA, especially mitochondria which causes cells to die when they become invaded. The bacteria turn off the mitochondria so the cell can't die and the bacteria or cancer thrives. My mitochondria is damaged.
I like the sound that the DNA can be repaired. I will be focusing on that. I am the eternal optomist.
Thanks everyone for your support! It is truly appreciated.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Sparke7 -
very well said - all of it but, especially, " There are factors that can influence or change genetic markers. "
I sure like to think my body can overcome stuff . . . new cells, you know. If I do my job, they'll do theirs, sort of thing.
i suspect that some of these new genetic tests will eventually be used by insurance companies to deny people coverage. I'm a bit concerned that they may not be accurate or that people do not understand that genetics are modifiable.
It's nice to be able to take a test to see what may be happening but some of this stuff is just common sense... neurotoxins, harsh chemicals, pollutants, pesticides, modified foods can all pose difficulties for the body to detoxify. Just because your body doesn't have a big issue re: genetic test with smoke doesn't mean it's OK to go out & start smoking or get a job working at a toll plaza.
There's still alot they don't know about this area. We are all living in a toxic soup of chemical interactions. They really don't know how this is going to affect us. It just makes sense to me to limit exposure to toxic chemicals when possible & to try not to be extreme with supplements, drugs, or any treatment. There's still alot that isn't known about the human body.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Luv,
Has she put you on a protocol to eliminate the Toxins, Toxic effects of the drugs etc???
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Is Plaquenil considered a "heavy duty" immune suppressant? I take that for several reasons...
Babesia, cyst bust, anti inflammatory..... I cannot take flagyl or tini
I did the vision test to see if my body is having difficulty detoxing and it showed that I am..
My lyme doc prescribed a powder medication that I think is actually a cholesteral medication, but it also binds with toxins to remove them from your body.
My first dose of this stuff gave me incredible relief.
O.K. Hope you are feeling better and I find your information very interesting. I am going to book mark it to come back to later and study up on.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Sparkle,
Free medical care? Guess not. Actually, I feel she treated very appropriately. She started traditionally and when I began to backslide with the mild joint swelling, she immediately took other steps to figure out why.
Lymewreck, I cannot find where Plaquenil is considered an immune suppressant. It is an anti-malarial drug that works well for RA and Lupus and the exact reason why is not known (never will be as long as they deny infectious causes to RA)
I really like the plaquenil and wish she had kept me on that one. If I backslide, I will ask her about it. It has relatively few side effects. The possible vision issue usually takes years to happen. I have babesia too and thought she was giving it to me for that reason.
She is doing herbal IVs now for the Babs. MTE9 it is called. I understand little about it. I am halfway through the 4 week treatment. I don't see the doctor until April, so it will be awhile before I know if the Babs is gone.
I do not have any Babs symptoms but still test positive for it.
If your powdered chelator gave you noticeable relief, it sounds like a good thing for you. What is it called?
Rianna,
She has started me on a detox protocol.
1-Pectasol Chelation Complex - It is a pectin alginate complex (I'm reading the bottle) I started this two weeks ago at 1 capsule daily and am to work up to 3 caps daily. I increased dose to 2 just a couple of days ago.
2-Reduced Glutathione - Nasal Spray. I just started this yesterday and by evening my ankle was swollen. This morning, I am achey in many places. The pharmacist that compounded this said it does help with detoxing as well as prevents an immune reaction whenever I inhale toxins like the dust and mold in my barn.
3-Cruciferous Vegetables: brocolli, brussel sprouts, cauliflower, cabbage, onions, garlic, etc. These veggies promote detoxification, are anti-inflammatory, full of nutrition and are anti-cancerous.
Please don't overlook these, they had an incredible positive impact early in my illness when all my joints were frighteningly inflamed.
Sparkle,
Yes, the genetics test can be used against you by insurance companies in most states. Only a few states protect you from cancellation.
IMHO, the insurance companies should embrace and demand these tests on all people prior to illness and certainly prior to treatment.
Just think how knowing your weak areas could help you to stay well. Being genetically prone to something does not equate to getting it. As I pointed out earlier, I never got alcoholism even though I am genetically capable.
Instead of cancelling us, the insurance company would save tons of money and could aid in keeping people well most of the time.
How nice it would have been in my childhood and all throughout my adulthood to know that antibiotics were not a good treatment choice for me.
According to my doctor, my current toxic state began at birth. Due to my poor detox pathways, crud just began to accumulate until something like the tickbite broke the camel's back.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Luvs, I have experienced exactly what you and your doctor are saying. It also happened to me. But I am of the opinion that you can detox the body of these toxic chemicals. But what/how to do it, is the unknown sometimes???????
They can be lessened or removed over time. Lots of work to do it. No, there's not a magic pill to remove the residue of toxics deposited in the body by some meds. That was sarcasm, folks.
You and your doc are not crazy Luvs!!!! Aren't you happy to know that? lol
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Luvs, I get a bit of a strange impression of your doc, who first puts you on heavy duty immunosuppressants (not typical for LLMD) and then now switches you off everything, and gives you herbal IV's--that sounds like playing with something risky to me, an herbal IV. Herbs can cause problems too and not be easily detoxed.
If your ankles swelled with nasal glutathione you could have problems processing the sulfur.
Good luck. Please think twice and don't blindly trust the doctor.
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Nope, my ankle is fine today and so am I.
Don't worry. I never blindly follow anyone anywhere. If I did, I would never have sought out integrative medicine. I would have just stuck it out with a standard doctor.
I'll keep you posted on my progress.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
PS:
I think what you guys may not realize is that with rheumatoid arthritis, permanent joint deformation is occuring and must be stopped.
In my case, she describes it as "explosive". 2 yrs ago, I would have agreed, but currently I hardly ever feel even an ache. So, I can only assume by explosive, she means in every joint. I am fairly certain that is what she said, but I was in such a state of shock to hear it.
As she explained to me when I begged her not to put me on MTX and Enbrel, when she goes after the bugs, the die off will damage my joints. The MTX and Enbrel will stop the damage.
It was a multifaceted approach. Abx to kill and MTX, Enbrel to prevent the immune response from destroying my joints. Not destroying my joints is a good thing. If you haven't experienced it, you can't possibly understand the horror.
Please understand that auto-immune is very very serious.
That was her gameplan until my body said "uh-uh".
The gene test says right on the results that it is not 100% accurate. But I'm not stupid. I have lived with my body for 52 yrs and I know it very well. The test results were right on target.
I can only hope her new direction proves successful for me.
I am very happy to come off all the meds. Search my earliest posts. You will see me state that I have had so many abx in my lifetime I could be an antibiotic poster child and if abx were the answer, lyme could never have thrived in me to begin with.
Coming off the meds just fits what I have known about myself all along. Please remember that Dr A was treating me completely without drugs and I was improving.
So far, I have no complaints. Yes, I do believe her work is experimental. So is everyone of yours. Any lyme treatment is experimental. How I wish we had the "just right" answer.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: cave76 - I don't know if these tests are accurate enough or not----but I'm certainly sure that that 'messing' with genetics and the immune system is a very delicate thing.
Everyday our genes & genetic markers are effected by everything in the environment. Check out the show they had on Nova about epigenetics & you'll understand more about it. It transcends the genes we are born with. I guess stuff like hair color or eye color are hard to change genetically - now. Maybe in the future it will be different.
The insurance companies just care about the bottom line. I don't think they care about our health. It seems they are in collusion with the hospitals, drug companies, gov't, etc. to make all the money they can. They don't give a damn about the welfare of the American people. If this wasn't the case, we would all be entitled to healthcare as American citizens - not as American workers. If anyone decides to get genetic testing - you really should make sure your privacy is protected & that no one can access your reports except you.
-----
Good luck luvs!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
oxygenbabe,
luvs and I have the same doctor. This doctor has been reaching out to more alternative therapies to help her patients who do not respond like others to what we know as traditional treatment by an LLMD.
She has a biochemistry background and won't do anything she does not understand the science behind. She also believes strongly in treating patients' symptoms while treating their Lyme.
I think that's why she had luvs on the immunosuppresants, to take care of her joints while treating the Lyme. Pain control has always been an important part of my treatment.
I also found out that the integrative medical center where I get my Myers Cocktails also uses this test.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Good post. Any more responses?
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
This test does look really interesting -- I'm looking at the website right now.
I have very severe MCS. I can't be around anyone who doesn't go through an elaborate decontamination process. Before coming into my space, people have to use nontoxic fragrance free body care and hair products for at least 2-3 weeks, wash their clothes in fragrance free detergent, and THEN change clothes at my house into clothes I have washed here in fragrance free detergent.
I have severe neurological, cardiac, and full-body reactions to minute amounts of fragrance and other chemicals.
I have had really adverse reactions to both medications and natural treatments such as homeopathy.
Even with that, though, I tolerate antibiotics like a charm. It makes no sense at all!
I *know* I have detox problems though, and I use glutathione, EDTA suppositories, red root, detox baths, and lots of other things to detox. I definitely agree with the power of cruciferous veggies and found that cabbage juice in particular helped bring my liver enzymes down when they were elevated.
I really want to get this test too now. I'm so glad you are armed with this great information now and can hopefully find a treatment that works!
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Hubby had 2 out of the 4 possible tests done 5 or 6 years ago I think when the lab was called Great Smokies -- before they were bought out by Genova Diagnositics.
The lab has added a couple of new genetic tests -- actually some of the same genes are tested with the Detoxigenomics test and the Neurogenomics tests.
And of course the cost is at least twice what it was 5 or 6 years ago. According to the Great Smokies info we received when the original tests were designed -- the tests only test for things that can be improved with supplements or diet.
Don't just assume that because you have bad reactions to antibiotics that they are toxic. Many of you have read of all the difficulties that hubby has had with various antibiotics.
According to the genetic tests hubby had done he only had a slight problem with the methylation pathway -- SAMe has helped greatly with this.
His immunogenomics test did not show any major problems either. He did not do the cardiogenomics test and I can't remember what the 4th test was that he did not do.
When hubby did the detoxification profile offered by the same lab -- results were VASTLY DIFFERENT. The detox profile test is much cheaper -- think it used to cost around $135. This is a functional test -- does not test genetics, but how your body is actually working.
The test measures 3 major detox pathways -- including glutathione. Also measures lipid peroxides -- CoQ10 is the best supplement for lowering free radical damage.
Hubby has done IV glutathione pushes at home for the last 5 1/2 years since he has had his PICC line in. Sometimes it has been a lifesaver and other times it has not seemed to be of much benefit.
He has also done the inhaled glutathione with a nebulizer. Supposedly some of the oral glutathione supplements are now better absorbed but hubby has never tried those since his insurance pays on the IV glutathione and he has the PICC line.
If you can afford it, I would suggest starting with the Detox profile since it actually measures what is working or not working in your body and then if there are major problems you might want to consider the genetic testing.
In my opinion, a funtional test is probably more important right now than a theoretical genetic test.
Bea Seibert
Editing to add : The detox profile test may be covered by insurance -- BCBS paid on hubby's test. The genetic tests will not be covered by insurance.
[ 10. May 2008, 08:25 PM: Message edited by: seibertneurolyme ]
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