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[Patricia.Ann]

Flossymaud I have sent you a private message with the Dr’s details in 🙂

I feel very positive about AP. Let’s face it the alternatives aren’t great are they? AP gives us hope and hopefully remission!!! We have masses of support and advice from the members here. They are all tremendously kind so I reckon we will be okay Flossy. It will just take a little time and patience on our part 🙄 Hang in there 😉

Take care.

Patricia x

[Michele]

JBower,

My heart goes out to you and your daughter! Maz has given you really good perspectives to consider. I’d like to add some from my own experience for you to consider; though I don’t have SD I have Lyme/RA.

When I first started AP, I could not tolerate doses of antibiotics. My herx was really bad and I became hypersensitive. Other “RA” patients seemed to tolerate much higher doses than I could. I knew something else made me different and eventually found the lyme coinfections. So I agree whole-heartedly with Maz that low and slow is important. This is a long slow process…don’t hurry. I recall being so eager to get well and thought that it was solvable quickly. 6 months to a year sounded like way too long. It does take time and patience. Now I realize I see the marked improvement by 1/2 year marks and not month marks. Once I was with a doc that was really knowledgeable, I have watched my symptoms decrease and have experience periods of no symptoms. Though, I am herxing from a new abx combo tonight! But I am doing quite well! This herx is nothing compared to the ones I initially experienced. Pain medicine did not touch the pain from my initial days with antibiotics. Tonight, I won’t even consider taking pain medicine. It’s really low level pain.

Another key ingredient in my case was including multiple kinds of detox into my regimen and finding the right ones that worked for me. There are many ways to approach this. You are doing great with a gluten free and dairy free diet. I would encourage you to keep that going. Thank goodness there are more options in grocery stores for those items! Sugar is also very inflammatory; try some varied brands of stevia to replace sugar. NuNaturals has become my favorite because it doesn’t have any aftertaste. A little goes a long way. My current doctor did genetic testing and I found out I am missing a gene to detox. For me, that explained why I herxed so badly. Neurotoxins cause horrible symptoms and my body was not releasing them. Interestingly, I talked to another long-term lyme patient tonight who said the same thing: she was missing a gene to detox. You may look into genetic testing because it was certainly key for me.

The FIR sauna is a great detox. I cannot tolerate it so it’s great that your daughter feels good in it. Did you work up to the amount of time she is in the Sauna? That is another thing that can cause too much herxing if the time is increased too quickly. I think SD people find it brings great relief, so that may just be what your daughter needs. But with a mix of lyme, increasing the time in the sauna too quickly may be too much. I think just make sure you realize the sauna is a potential variable in herxing. See how she feels from it. If she is sweating out the toxins, fantastic! Perhaps some other folks that have Lyme and SD can chime in on their FIR Sauna experiences. For me, that was a variable and I just want to make you aware of it.

I teach at a university. While I know you must feel great pressure to have your daughter get through her senior year and get on to college, know that it’s ok to focus on her health. Just this year we had a student who we fully admitted and were recruiting who elected to delay entering college for a year so she could focus on her lyme treatment. Those of us (few) faculty who were aware of this decision were quite relieved for this young woman because it was the best move for her. We understand and hope she will recover and enter next year. At my university once you are accepted you may defer enrollment / entry for a year. So, while you feel all this pressure for education, you may want to find out from your choices of schools their policy on deferred enrollment. Senior year in high school is so busy and sometimes stressful enough without having to deal with health issues. Stress is a trigger for flares. Taking some pressure off could be an option. She may look into online classes and go at a slower pace and knock of some general education requirements. Then when she is feeling better she can enter full-time. Just be sure anything online transfers into her institution of choice. All of this, of course, depends upon your daughter’s personality and wishes. Diversion has been my best medicine. Stress is definitely my worst enemy.

I wish I could help you immediately. It’s a tough road. You sound like a wonderful mom who has really done a lot of research into finding the best resources for helping your daughter. Follow your intuition and keep learning as much as you can.

Michele

[jbower79]

Michele,
Thank you so much for the information and advice about college. Deferred enrollment may be a good option. She is focused on applying to 4 or 5 different schools now so I guess getting accepted would be the first step and then waiting to see if we have to request deferred enrollment later in the spring when we have several months under our belt to see how she will respond to treatment. I wondered if you could tell me what the name of the genetic test is for testing whether she has the detox gene? If insurance would happen to cover any part of it, I would love to have the test done this year. Another question…if you are missing a detox gene, what do you do to get around that problem? Sounds like issues that Dr. Richie Shoemaker talks about in his book Mold Warriors.
Thanks again for all the information and sharing your experience. It would be so much easier if this were me instead of Abby. My other two daughters who are younger than Abby don’t quite understand my need to figure this out.

Joyce

[Michele]

Hi Joyce,

The genetic testing information is:
DetoxiGenomic Profile
Genova Diagnostics

This tested the Phase I and Phase II detoxification process.
“Phase I is our first line of defense against toxins. Enzymes in the liver act on the chemical structure of a toxin to make it easier to excrete. For some compounds including many drugs, Phase I is all that’s needed to eliminate the toxin. Other toxin are actually made more reactive after Phase I and require and additional step. Phase II is our second line of defense against toxins. Phase II further alters the chemical structure of a toxin by adding, of “conjugating,” water-soluable molecules to the toxin.

The test checks Methylation, Acetylation (N-acetyl transferase), Glutathione Conjugation, Oxidative Protection. There could be genetic anomalies in any of these processes. For me, I have an absent gene from the Glutathione Conjugation. At one time I was prescribed a glutathione nasal spray. I have also had IV Glutathione pushes at the end of another type of IV treatment.

This is a sample of the test: http://www.gdx.net/core/sample-reports/Detoxi-Genomics-Sample-Report.pdf

I have not read Shoemaker’s book but I probably should. Mold was on my doctor’s “hit-list” for things to check. We had to have our home inspected to assure we don’t have mold. We did not have mold. If we had, we would have had it remediated immediately.

In regards to detox, look at that sample test because it lists the foods, herbs and teas that are recommended. I also have added an Aquasana water filter to our drinking water. In the research I did, I think only reverse osmosis would take out more toxins. I really like the pure taste of our water. You can get a water filter for the whole house, or separate systems for the sink and shower.

Coffee enemas and Liver flushes are other detox methods that Dr. Z prescribes. The coffee enema provided significant relief from pain. I am not fond of the liver flushes but the first ones also reduced my pain. Apparently, my doc has seen much improvement in people who do the liver flushes. She does them herself. Enviably, she likes olive oil a whole lot more than I do. Another detox I am currently doing is ionic footbaths. They seemed to really help at first. Dr. Z said that she thinks they max out their assistance after about 10 treatments. Dr. Z’s also recommends the FIR Sauna for detox. So as long as you are gradually increasing the time in the sauna and not overdoing it, you have already found one great detox method.

Michele

[A Friend]

@Michele wrote:

Hi Joyce,

The genetic testing information is:
DetoxiGenomic Profile
Genova Diagnostics

……..Coffee enemas and Liver flushes are other detox methods that Dr. Z prescribes. The coffee enema provided significant relief from pain. I am not fond of the liver flushes but the first ones also reduced my pain. Apparently, my doc has seen much improvement in people who do the liver flushes. She does them herself. Enviably, she likes olive oil a whole lot more than I do. Another detox I am currently doing is ionic footbaths. They seemed to really help at first. Dr. Z said that she thinks they max out their assistance after about 10 treatments. Dr. Z’s also recommends the FIR Sauna for detox. So as long as you are gradually increasing the time in the sauna and not overdoing it, you have already found one great detox method.

Michele

Michele, your post is a number of years old… and just accidentally found it while doing a search. One of the things (at a glance) that looks like would be another really good detox to add for above problems would be the Nondenatured Whey Protein. It has been shown to address organisms on lab reports for which abx are needed. Once when I’d had a terrible reaction to pulsed Minocin and pulsed Zithromax for an abnormal lab, I had such a horrific reaction (my liver rebelled), and I had to get off all abx and all supplements for a time.

I had just read about Dr. Paul Cheney’s research on Fibromyalgia patients using nondenatured whey protein successfully, and no abx, and in six months the labs were normal. (I had used it with the same results, but had a different diagnosis … in 6 months, and my AP physician retested at end of that time, and the lab was normal. My AP knew Dr. PC well. The ImmunoPro was what I used, and this nondenatured type product helps make glutathione and helps the liver with metabolic detoxification of the liver.
Best,
AF

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