Is it maybe some genetic thing like an inability to detox? I feel like I am limiting my getting better because I have to take such low doses.
I have seen some of you post in the past about genetic testing for various things that give you clues as to why you can't process things, have terrible herxes, etc.
I am wanting to know what those tests are, because I am wondering if I should have them (or at least some of them) done to see if there is anything contributing to my inability to take full doses.
Thanks........
Posted by seekhelp (Member # 15067) on :
They exist, but are expensive and most LLMDs, including mine, elect not to do them as they believe you can do nothing to change your genetic make-up so it's wasted money for the patient. True in many respects UNTIL you get deathly sick and have no idea why. I'm lost why they don't consider horrible detoxing a huge medical risk when they clearly state how important detox is and how lethal Bb die-off/herxes are. it's very contradictory.
A bottle of Mepron can cost someone a grand. Nice to know ahead of time the likelihood you can handle it, right? IF, and this is a huge if, there is validity to these detox tests (HLA-testing), it seems paramount to know from a patient's perspective. From a doc's perspective...maybe not so much.
Posted by sutherngrl (Member # 16270) on :
I can only tolerate low doses myself. And really who knows what damage all these huge doses that people are taking is actually doing to them in the long run.
I know people that have gotten well and stayed well doing lose dose treatment. I think it is more about time then it is huge doses. This is just my opinion though.
Posted by Tif (Member # 12701) on :
Thanks, anyone else?
Posted by seibertneurolyme (Member # 6416) on :
What you need to know is that there are genetic things related to detox that can't be fixed, but there are sometimes functional detox issues that can be compensated for with the correct nutritional supplementation.
The Genova Diagnostics (old Great Smokies lab) offers 2 types of detox testing -- the first is a functional detox test. You swallow 3 substances -- tylenol, aspirin and caffeine pills and then the test meausres your ability to detox those items and shows the functional abilities of both Phase 1 and Phase 2 detox cycles. This test costs less than $200 I think and should be covered to some extent by insurance.
The test measures such things as glutathione and lipid peroxides.
The 2nd test offered by the company is more expensive -- but although it is a genetic test supposedly it only measures things that can be fixed or improved with supplements. Since it is a genetic test it probably would not be paid by insurance.
In the past the lab would give you names of docs who used their company so you could find someone to order the test. Most ACAM docs know and use this lab. Also many chiropractors.
There are several other companies which offer more comprehensive genetic testing at higher costs.
Personally I would do the functional test first to get a basic idea of whether detox is really the problem.
I just went to the website and it looks like there are quite a few new nutritional tests available from this company -- it has been at least 3 or 4 years since hubby did some of these tests.
Bea Seibert
Posted by Keebler (Member # 12673) on :
RIFE machine - with lyme and TBD (tick-borne disease).
============
FAR INFARED SAUNA (low-heat)
While this will not directly kill infection, indirectly, it can help tremendously in the body's effort at get out toxins and increasing circulation safely. Hot saunas can be dangerous to the heart of a patient with lyme. But these low-heat FAR infrared saunas can penetrate deeply and be much safer.
Heavenly Heat is considered on of the best brand.
Be sure to avoid plywood and toxic glues that are in some models.
-
Posted by tcw (Member # 15698) on :
It may not necessarily related to ability to process the drug - some people just herx harder than others. A low dose today does not mean a low dose forever. My son was laid out flat with just a week of doxy at 200mg/day, so much we had to discontinue. After about 4 months of ceftriaxone and rifampin, we added doxy again - first at 200mg/day, then 400. He herxed for about a week, and then made considerable improvements.
I think in many ways the treatment for Lyme may be opposite the standard thinking, which is if you are sicker, hit the infection hard at first. Sometimes with Lyme I think the better option is to start with low doses and only change one thing at a time if you are already really suffering.
Posted by Lymetoo (Member # 743) on :
Could be from your high bacterial load. As it decreases, you'll be able to tolerate higher doses.
I hear your frustration!!!
Posted by Brussels (Member # 13480) on :
In my opinion, it doesn't have to do with high or low burden of infections.
I never used high doses of anything, nor even herbs, and improved anyway. I think the problem is not HIGH dosage (that varies from person to person, infection to infection) but on HOW the person responds to it.
If you feel improvement, I guess that's what matters, no matter the dose. Adding more than your body can take is not beneficial and on the contrary, in my feeling, can cause much more damage than the infection itself.
not only we see variations in the amount of abx but also it is VERY common to see variation in the amount of herbs. If you go to Buhner forum, you'll see all types of people using a very varied amount of herbs.
I improved with very little. I never reached the full Buhner protocol to 50% in all herbs. And I got to remission a few times.
Now I'm in remission again, so I think it can be done with low dosages.
Posted by Tif (Member # 12701) on :
Thanks everyone, I am feeling more reassured about this seeing these responses........
Posted by aiden424 (Member # 7633) on :
I'm really sensitive to everything I take. That includes all drugs and supplements. I have to start everything at a really low dose and try to work up to a larger dose. It can take months, my thyroid meds took years.
![[Smile]](smile.gif)
IF, and this is a huge if, there is validity to these detox tests (HLA-testing), it seems paramount to know from a patient's perspective. From a doc's perspective...maybe not so much.
![[group hug]](graemlins/grouphug.gif)