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Rachel--24

Omg...i Might Be On To Something

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LOL, most people wouldn't think it was a problem to lose 4 pounds of bloat! :lol:

I'd be one of those. I need to lose a lot more than 4 pounds though. :lol:

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Carla,

I know I should go more!!! That's my problem - procrastination - busy-ness - blah blah!

I am going to make an effort to NOT let it get this bad again.

Also, on the weight loss - I don't know what you were going through last time but if I were to guess it was when you got really sick right before being treated for lyme?? If so, this time should be different since you have discovered and irradicated the mold and have aggressively treated lyme.

Hopefully, it won't be like that this time! I wouldn't want my muscles to waste away either!

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Sounds like a good appointment....so what's next... more testing?

More testing and he wants to see me as soon as its all completed......and then he'll know where he wants to start with this.

He had the results to my last tests (amino acids, thyroid and CD57). There were not alot of significant abnormalities in the amino acid analysis and I believe that why he was looking more at Lyme.

I did have some GI markers out of range, a few of the B6, B12 & folate markers were out of range, magnesium markers out of range....but the amino acids involved in the methylation cycle were in normal ranges.

He felt that my methylation cycle is intact and there isnt an indication of faulty sulfation.

I didnt want to steer away from this and I also feel like moving toward Lyme would be a huge step in the wrong direction for me.

I think that every doctor (no matter good he/she is) can easily get turned around based on a test result or experiences with other patients, etc. I feel like I'm an individual and my situation is my own....and not necessarily "typical". I did about 5 ART sessions and none of them indicated that Lyme was a major player....and the CD57 results have supported that.

I do trust the energetic testing and I think its been a critical part of putting all of this together. I'm not going to ignore it now. My gut tells me that its not Lyme.

Fortunately, he seems to take the results of energetic testing just as seriously as he does the labwork thats been done. :)

He never saw the results of my ART sessions...or my report from Anna....and so I gave those to him and we went over the results.

I also took the OAT results out and when he looked at them it made him rethink everything. He was studying the map of the methylation cycle because my OAT results do show that something isnt right.....even if the amino acid test looked pretty normal in that area.

He found it really interesting and I can tell he was getting excited.....like maybe he felt challenged because this is something that he doesnt see everyday. I'm totally cool with that....the more excited the better! :lol:

Anyways, he said that my methionine and my homocysteine are on the low end......so there might be a problem casuing that.....and even though sulfation pathway appears to be normal I also have evidence of glutathione deficiency on the OAT results.

There is one enzyme that might be involved...and he wants to check the levels of SAMe and SAH. If those are normal he doesnt think theres a problem in that part of the methylation cycle.....if they are not normal this could be where the block is and very often this block is caused by virus.

What we are testing is the SAMe/SAH, detoxification panel of Genomic testing and also checking for inflammation caused by virus. So those 3 tests....which should be back in about 3 weeks.

He is really focused on Lyme and especially virus (I'm sure because thats what he sees the most in autism). I remember Anna said the only big difference between me and the autistic kids is VIRUSES. I dont have them and the kids do (from the vaccines)......and I had much more fungal issues instead.

I showed him my report from Anna. He couldnt believe it....I had so much going on and yet totally NEGATIVE for any viruses. I also told him that I never had any virus show up in any ART session.. Not a single virus ever showed up.

All my bloodwork is totally negative except for the IgG on the HHV-6 (unfortunately IgM was not tested). As we know this could be reactivated and it could be present as a low level infection. So thats the main purpose for the viral/inflammation test. I'm not really thinking thats the problem but he said my titer was really high (and it was). Anyways, a virus (like this one) could create a block in methylation.

HOWEVER, I asked him if a virus or Lyme could actually cause such a dramatic change in health so quickly...almost like someone switched a switch. First there were no chemical/food sensitivities.....and then there was THIS. :blink:

He said this points to a methylation defect. Something that was there all along but functioning well enough to keep me healthy...until I got hit with the metals. That type of "event" could easily result in what I'm dealing with now. In that case...I am more susceptible to infections but they are not the cause of the problem.

And in that case my CD57 might pop back up if we can open up the block. It might be suppressed because my immune system is just weaker than it would be if I were not dealing with this. He said it would be interesting to see if the CD57 would go back to that of a healthy person simply by opening the pathway and without ever having to treat the Lyme.

In addition to those 3 tests I am also keeping my appt. with the new Voodoo lady (Oct 22nd) and he faxed over to her a list of specific questions he'd like her to answer if she can.

Its mostly pertaining to the methylation cycle and where there might be a block...and if there is a block what things will be most beneficial for me. And of course she will also look at Lyme, viruses, metals, parasites, etc.

He said as far as he knows there are only these possibilities as far as what is locking up the metals.

Blocked methylation (genetic)

Lyme

Virus

Emotional issues

He said thats about it. I have chemical sensitivities and he feels my primary problem is liver function....not the gut issues.

I think there was probably more stuff to post about but I have to go back to work now. ;)

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Stuff will continue to circulate in my mind (just like you said) if I dont do anything to "release" it.

During the first couple years I tried to get this stuff out....so it could be resolved....since we just broke up without really talking about it. My ex didnt want to think about it or talk about it....and said that everything was pushed down deep inside....and trying to bring it out just caused big fights.

We're still friends but all that stuff is still bottled up I guess. There is some kind of indestructible walls up now.....and thats just the way it is....and its frusterating for someone like me who NEEDS communication and resolution.

I agree. Honesty and transparency is important to me in relationships. I want to KNOW what the other person really thinks and believes. It's as if they aren't willing to be vulnerable and admit their true feelings--they think that expressing emotion is showing emotional weakness, and that they want to preserve themselves. I think acting as if one is tough all the time is a disease of denial.

I dont do well with people who become very introverted when times get tough. After a fight my ex used to go, angry and mute. Something would trigger him, and he would need to be alone to think it out.

He would cloister inside his shell and basically become an isolationist. It was harder because I didn't feel like myself, and I felt dependent, but I finally decided--after 3 years--I had enough, and dumped his ass!

The bad relationship, with little or no support network, made it harder to feel strong enough on my own.

I'll find someone who loves me the way I am, and doesn't want to change me, when the timing is right.

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Wow that's good news Rachel that he seems very confident that he can help with the methlation cycle that may be blocked in you.Dan autism

Here's an article that somewhat talks about what your doctor and you are discussing somewhat.

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Wow that's good news Rachel that he seems very confident that he can help with the methlation cycle that may be blocked in you.Dan autism

Here's an article that somewhat talks about what your doctor and you are discussing somewhat.

Yup...he's a DAN! doctor (Defeat Autism Now)....so the info. is pretty much the same. There is alot of focus on the metabolic issues.....the genetic mutations/weaknesses that can set some of us up for chronic illness.

I totally agree with this statement...

I think that the reason why the people who have developed CFS as adults did not develop autism as children (even though I suspect that they have the same or a similar genetic predisposition) is that fewer vaccinations were required when these patients were children. The schedule of vaccinations required for children in the US has grown substantially over the past two or three decades, as has the incidence of autism. This is also true in the UK.

I do believe that Anna was probably 100% on target when she said if this exposure had happened to me as a baby...I would have been autistic. I cant imagine that my body would have handled the vaccine schedule that they use today. I lucked out big time because even if I suck at math now my brain still functions pretty good. :)

If we can find the area that I need support then I'll be taking whatever nutritional supplements are necessary.

The doctors associated with the DAN! project treat autism with nutritional supplements that compensate for genetic mutations in the sulfur metabolism. These include such supplements like magnesium sulfate, taurine, molybdenum, vitamin B6 and its active form P5P, magnesium, methylcobalamin, folinic acid, trimethylglycine, and dimethylglycine. These practitioners also use certain diets, and they perform chelation treatments to remove heavy metals.

The results in many autistic children have been astounding. (Visit http://www.danwebcast.com to view interviews with children undergoing this treatment.)

Dr. Yasko, in cooperation with Dr. Garry Gordon, also uses many of the same supplements used by the DAN! project doctors as well as some additional ones, including RNA supplements, and she is also reporting great success.

All of the test results indicate deficiencies of B12, B6 and folic acid....which are all important but he doesnt want to just start me on those without knowing whats going on with the methylation cycle first. He said we could try it if I'm tired of waiting but he doesnt know how my body would respond and at this point we would just be guessing. I'd rather wait until we have more info. ;)

The suckiest part for me is the food intolerances. :(

He said all of the research thats been done indicates that this is caused by toxicity....same as multiple chemical sensitivities....and they do get better when the toxic load is reduced.

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There is one enzyme that might be involved...and he wants to check the levels of SAMe and SAH. If those are normal he doesnt think theres a problem in that part of the methylation cycle.....if they are not normal this could be where the block is and very often this block is caused by virus.

What we are testing is the SAMe/SAH, detoxification panel of Genomic testing and also checking for inflammation caused by virus. So those 3 tests....which should be back in about 3 weeks.

Its mostly pertaining to the methylation cycle and where there might be a block...and if there is a block what things will be most beneficial for me. And of course she will also look at Lyme, viruses, metals, parasites, etc.

He said as far as he knows there are only these possibilities as far as what is locking up the metals.

Blocked methylation (genetic)

Lyme

Virus

Emotional issues

Rachel, my LLMD is a DAN doctor as well and treats lots of kids. Just a comment, because I just had my Sam/SAH this summer. My LLMD said these are almost always normal in adults.

Sure hope he can figure out with the block is!

Sherry

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Oh yeah.....he wants me to take this (after I do my bloodwork) and then call him after a week to let him know how I'm handling it.

http://www.jarrow.com/product/384/Curcumin_95

I dont think theres even a slight chance I'm gonna tolerate it....but I will try! :P

If I do ok he wants me on it for a couple weeks and then he wants to try a glutathione "push"......with just pure glutathione.

Ummm yeah....we'll see how it goes with the curcumin. :ph34r:

Also my thyroid levels were normal except FT3 was a little high....he said we'll just leave that alone right now.

I swear my thyroid must be functioning....my armour dose is very small (for someone with a nuked thyroid).....plus I forget to take it sometimes....and yet the TSH is normal, FT4 is normal and FT3 is a little high. :huh:

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Rachel, my LLMD is a DAN doctor as well and treats lots of kids. Just a comment, because I just had my Sam/SAH this summer. My LLMD said these are almost always normal in adults.

Sure hope he can figure out with the block is!

Sherry

Yeah....I'm expecting it to be normal. He said when the block is in that area its usually caused by virus......and I think thats really common with the autistic kids. I'm sure it can be an issue for some adults...but definately more common in the kids I would have to assume.

I assume most of the adults he sees are probably Lyme patients. I think its the same with my doctor....most of the adults are being treated for Lyme....which is why I think *every* doctor I see is always ready to jump on the Lyme above all else. That part frusterates me!

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I assume most of the adults he sees are probably Lyme patients. I think its the same with my doctor....most of the adults are being treated for Lyme....which is why I think *every* doctor I see is always ready to jump on the Lyme above all else. That part frusterates me!

That might be, I am not really sure. Before he shifted his practice over to mostly kids, he had a chronic illness practice and saw a huge variety of people that were just not getting well with conventional approaches. Even cancer patients.

Sherry

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Carla,

I was gonna say the same thing about the weight loss. I lost alot of weight when I reduced my exposure to toxins....it wasnt "healthy" weight though.....it was all fluid retention and inflammation from the toxins. For me it was alot more than 4 lbs. though. I was so full of fluid and my wieght would fluctuate sometimes close to 10 lbs. a day! My total weight loss after I started "cleaning up" was 25 lbs! :blink:

I was definately not happy with that.....but I actually felt a ton better.....even if I looked "sicker".

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Ack! If I lost 25 pounds I'd weigh about 100!

Yes, so far this is nothing like last time. I'm all for getting the toxins and inflammation out. :) I'm okay as long as I don't lose much more. ;) My weight generally didn't fluctuate at all. If I weighed myself first thing in the morning, it was always about the same.

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Ack! If I lost 25 pounds I'd weigh about 100!

I ended up at 94 lbs! :o

NOT pretty! :ph34r:

I hated it....but my head felt so much better!

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Ok....this is the stuff the new doctor is suppossed to be checking when I see her. This is the list Dr. P. faxed over to her office.

1. Check if methionine -->SAMe is blocked. If so what will help antivirals?

2. Check if SAH -->Homocysteine is blocked. What will help?

3. Check if Lyme, viruses or methylation impairment is preventing the Hg from coming out.

4. Cannot tolerate glutathione. Will curcumin or yucca help? Is there mutation involving glutathione? What other ideas?

Check bacteria (esp. lyme/co-infections)

Check parasites

Check viruses

Check heavy metals

Check Iodine deficiency

Check vitamins

Check methylation cycle

Check hormones

Check IV PC help? Once methylation opened up (not sure what this means)

Check Dental Foci

Those are his priorities.

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I saw the ND yesterday mainly to talk about my son. I want to try him on the SCD diet but need some back up evidence to get hubby's support. I don't think it would be a bad idea to do some testing on him anyway, since he hasn't had much.

So, we are doing the CDSA 2.0 - Comprehensive Digestive Stool Analysis by Genova. Hopefully it will show what might be going on in the gut that is preventing him from healing all the way. He is still having ADD like symtpoms which I know is related to food, his immune system is still low, Plus he is skinny and with his history I am sure there is some kind of digestive issues still going on. He doesn't have D anymore but I never did have that problem and I had A LOT of gut issues.

She wasn't familiar with the Rosmed test which Sherry had done to see how carbs were digested. I don't know if this is similar in nature.

Either way, hopefully it will support my gut feeling about what might still be going on so I can try the SCD diet with support.

For his immune system she gave me New Zealand purified colostrum. I had researched that at one time for my cousin when he was paralyzed in a car accident. He didn't listen though.

She likes the idea of the homemade goat yogurt that I am already doing. He drinks down a full cup at a time! No problems with it so far. Now, I mix in the colostrum with it.

I had considered doing testing myself, but I have done so well on the SCD diet that I held off. Its very expensive and I would rather get the kids tested first.

Next I want to check his heavy metals again - possible provoked this time. I want to compare it to his first test that was done 1 1/2 years ago. Plus, copper might still be an issue and could be *part* of the reason for some of his neuro type symptoms.

She sent home this book by a Dr. Raap that writes about how allergies can affect children nuerologically so If my hubby wanted to read some. It was pretty amazing how she had example pages in there where the kids would write their name fine. Then they would expose them to the allergy and they would write their name all screwed up or even backwards. Then they would remove the allergens and the child would write their name normally again. One child even wrote dyslexic (msp) while being exposed to allergies. One example used Mold as the allergen.

I can get the name of the book if anyone is interested. Of course, hubby didn't read anything..... :rolleyes:

The last test for him is a SpectraCell analysis. I forget what that one was about.....

She also said I am one of the ONLY parents she has met that is willing to change the kids diets if and when its needed. She says a lot of parents won't hardly try something for 3 weeks. I don't get that! It could be because I went through it and understand it, but even if I didn't, I would still do whatever is necessary to ensure the health of the kids.

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April, I had that Genova test .. it was very informative. That was what showed me I had bad bacteria. It didn't pick up the worms though. Get copies of the results, they even have lists of the herbs that will treat the problem right on the test results.

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She sent home this book by a Dr. Raap that writes about how allergies can affect children nuerologically so If my hubby wanted to read some. It was pretty amazing how she had example pages in there where the kids would write their name fine. Then they would expose them to the allergy and they would write their name all screwed up or even backwards. Then they would remove the allergens and the child would write their name normally again. One child even wrote dyslexic (msp) while being exposed to allergies. One example used Mold as the allergen.

April, I actually experience this when I get really toxic!

I dont know if in my case its caused by specific allergens or just toxicity in general though.

My handwriting used to be very neat.....my writing is very sloppy now.....even if I concentrate really hard. :huh:

If my "bucket" is overflowing I tend to misspell alot of words....usually leaving certain letters out (always the same ones) and I even have trouble with my own name. :blink:

I also will frequently reverse the letters in some words. For some reason almost every time I type out "gold".....it comes out "glod"....and then I have to correct it. Theres a few words that I mix up like that almost every time I type or write them.

As far as my handwriting....its kind of frusterating because everything looks like scribble to me now.

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The last test for him is a SpectraCell analysis. I forget what that one was about.....

I've had SpectraCell....it was for vitamins, minerals, amino acids, antioxidants.....a measure of those things.

I also had the CDSA....but it was a few years ago. It told me I had dysbiosis but didnt identify any specific pathogens.

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April, I had the spectracell more than once. My LLMD told me this summer that the lab changed their way of doing these last spring. Since then, many more have come through with normal results, even those on kids that he KNOWS have problems. So he is not happy with the change. And it will take awhile to build up a base of cases on which to judge the results.

So my Jan results and June results cannot be compared. Big bummer.

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I found some info. on the "inflammation" test I'm doing.

I had never heard of these but they're called "pterins"......and these are what will be measured in the urine (Neopterin and Biopterin).

Carla, apparantly it has something to do with cytokines and activation of the immune system. The pterins are "markers" for this.

http://www.metametrix.com/resources/PDFs/N...ite%20paper.pdf

Anyways, this is the test that I have to ship to France for $80.....which is the same cost as the test itself!

I dont know why but if the cost of the test itself was $160 (no shipping fee) I doubt I would think anything of it....but somehow its different when I'm paying $80 for shipping! :huh::rolleyes:

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Rachel, just think of the shipping cost as cheap airfare! It's a trip to France including transportation from the airport to the final destination. :lol: :lol:

Sherry, glad you're feeling a bit better today!

In that book I posted the link to yesterday .. the one written in 1919 .... the doctor talks a lot about mercury treating syphilis. He was actually investigated because he didn't use it (remind you of our LLMD's?).

Anyway, he talks about this same "detox reaction" that I have had. He says the patients would feel so much better right away under his care (it was live-in). Then when their body was strong enough it would have a healing reaction and the person would feel horrible.

He said the body would feel better because it's being given what it needs (fresh air, sunshine, good food). Then the body would know when it was strong enough to take care of the deeper problems. Then the person would feel horrible, but it's not a danger because the body knows how much it can handle and won't start the healing reaction if it can't finish it.

Another interesting thing, not from the book ... ever since we got rid of that mattress, Adam has been getting terrible headaches. I gave him cholestyramine once and it took the headache away. Yesterday he said aspirin wouldn't even touch the pain ... but he wasn't home to try cholestyramine.

I'm still feeling weak/bad. I wish I had a good book to read .....

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Sorry you are still feeling poorly, do you think it is lighter yet? Hope Adam doesn't get worse before better.

Interesting that all this was realized so long ago but it is not a common understanding. How long does he say the healing crisis will last?

I am hopeful that I am going to pull out of this and that it is a sign that the Enula is effective. My LLMD told me it could enhance both of these meds to alternate them. Hope it does!

Sherry

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No, I don't know how long it's supposed to last. If I read it I forgot, LOL.

I also think it varies based on what's being healed. I believe I also read that you can have a healing reaction, then feel better, then when you're strong enough, have another.

Obviously, there has been a conflict between alternative practitioners and conventional ones for quite some time.

I hope this treatment works for you, Sherry. It's an interesting protocol, for sure.

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