Omg...i Might Be On To Something

[dlp252]

It's funny because I've always thought I had a thyroid problem, but I've been tested by conventional doctors, alternative doctors, and the HN doctors which are sort of in between. I'll have to look at the actual numbers tomorrow when I get home. It was sort of satisfying to see that ART says the lyme is majorly affecting the thyroid. That was the organ most affected by it...that and the head, lol.

Thanks for the info nyxie, carla and julie!

Re the shots, lol. Last week, I remembered at 5:00 at night...a little too late to take it.

Today I remembered after I was here at work...I won't be home until 9:00 at the very earliest and most likely later than that, so it won't be happening today. I actually meant to take it on Friday when I was home early, but completely forgot until the afternoon. I guess I need to put the stuff in a more prominent place...it's on my counter in my livingroom, but I guess it's not quite visible enough, lol.

[Green12]

When it comes to thyroid levels, there's "normal" and then there's "optimal". Quite often our free Ts will be in range, but towards the lower end of the range. They really should be in the upper 1/3 for us to feel better (on that front anyway).

I agree Nyxie.

I have always tested within range on the conventional tests, but usually always in the lower end of "normal".

Since going alternative I have always had my results interpreted differently anyway, being in range but at the lower end of that range is still looked at at being significant and needing support.

My hair analysis though definitely indicated thyroid issues.

About the naps, your body obviously needs the sleep. That's when we repair and heal, so don't fight it if you need to slow down or even take that nap

[confused]

Donna,

I know were you need to put the b-12, in your em pink case lol. Since you always have time to put your makeup on lmao.

paula

[CarlaB]

About the naps, your body obviously needs the sleep. That's when we repair and heal, so don't fight it if you need to slow down or even take that nap

Yep, this is true. This is why Lymies aren't supposed to have caffeine ... so we take naps when we need them.

Paula had a great suggestion, Donna!

[mftnchn]

I'm leaving the USA 3/29, so it isn't long now to get everything in order here.

Sherry

[confused]

If you have thyroid problems you have low bopdy temp right. Well how low would be an indicator of thyroid problems. Mine has always been a little low but not majorly low, like 98.2 and stuff, could this be a slight thyroid problem even tho blood work has always been normal.

paula

[confusedks]

I had a good appt. with Dr H. I am too tired to type an update now, but I will in a few hours.

All I know is that they put me on A LOT more supplements. Oh Carla...he told me to do Ecoffee NO more than 2x a week.

Donna...I forget my B12 shots a lot of times too, lol! I guess injecting myself isn't memorable enough! LOL!

[CarlaB]

If you have thyroid problems you have low bopdy temp right. Well how low would be an indicator of thyroid problems. Mine has always been a little low but not majorly low, like 98.2 and stuff, could this be a slight thyroid problem even tho blood work has always been normal.

paula

Under 97.8 according to Dr. Broda Barnes .... but I found in teaching NFP that it was people who had 97.6 and under to be symptomatic.

Kassandra, why did he tell you so infrequently?

[confused]

Under 97.8 according to Dr. Broda Barnes .... but I found in teaching NFP that it was people who had 97.6 and under to be symptomatic.

Kassandra, why did he tell you so infrequently?

Thank you, i just went and looked her up, i am going to check mine for 3 days in the morning like she says and see what it shows, i was just talking to hubby and he said mine ahs been 97.6 before cause he said i would kid and say hey im really cold blooded lol. I found it intersting that she said it is common not to show up on blood test but the temp thing is the most accurate. I have lots of realtives with thyroid problems and it has always scared me, but since blood work was always normal i never worried.

paula

[Rpm999]

julie, i never answered you before but the thing is i just haven't had anything done in a while....no deficiency's tests, no provoked urine test...and obviously a physical and a check-up with anything...the bioset woman understood, she didn't try me on anything because she saw how bad condition my body is in...which made me feel good, because maybe i'm not in pain like some people on here, but anymore neuro/mental symptoms and i'll die haha...that's why it's probably good to get EVERYTHING checked and try to build on some things

the liver thing is a pretty big thing, so the bioset woman will obviously help with that when i see her again....and once that's helped, things will probably a bit easier

[Green12]

I know were you need to put the b-12, in your em pink case lol. Since you always have time to put your makeup on lmao.

Excellent idea Paula

Donna you could always make a spreadsheet and color code your syringes and other paraphenalia for the shots as an extra reminder

Yep, this is true. This is why Lymies aren't supposed to have caffeine ... so we take naps when we need them.

I've been sleeping a lot the last 2 months, I've noticed over the years when I start treating something the first few months I need naps and then I start getting stronger and don't need them as often, and then eventually not at all.

If you have thyroid problems you have low bopdy temp right. Well how low would be an indicator of thyroid problems. Mine has always been a little low but not majorly low, like 98.2 and stuff, could this be a slight thyroid problem even tho blood work has always been normal.

Yes that's true, a low body temp can be an indicator of hypothyroid.

Usually you take your temp readings at different times of the day over a several day period and keep it in a journal. It's been so long since I've done this but they look at not only the temp, but what the temp is in the certain part of the day (like upon rising, etc)

I had a good appt. with Dr H. I am too tired to type an update now, but I will in a few hours.

Yay, glad it was a good appt. looking forward to the update

[Green12]

julie, i never answered you before but the thing is i just haven't had anything done in a while....no deficiency's tests, no provoked urine test...and obviously a physical and a check-up with anything...the bioset woman understood, she didn't try me on anything because she saw how bad condition my body is in...which made me feel good, because maybe i'm not in pain like some people on here, but anymore neuro/mental symptoms and i'll die haha...that's why it's probably good to get EVERYTHING checked and try to build on some things

the liver thing is a pretty big thing, so the bioset woman will obviously help with that when i see her again....and once that's helped, things will probably a bit easier

rpm, then if she just wanted you to get some basic blood panels as a starting point then that would probably be a CBC, or a complete blood panel.

[Rpm999]

i haven't really talked to her, but my mom said she called and said some thing so i'll have to find out...she said some thyroid things, but tsh, free t3 and freet4 all came back fine which is good...but in bioset it came up as being hyper, either way i'm sure there's just something effecting that...and i assume she wants to just get a better idea of where my bodies at and all that

[Green12]

i haven't really talked to her, but my mom said she called and said some thing so i'll have to find out...she said some thyroid things, but tsh, free t3 and freet4 all came back fine which is good...but in bioset it came up as being hyper, either way i'm sure there's just something effecting that...and i assume she wants to just get a better idea of where my bodies at and all that

Yes, that's good.

I was going to add something to what I said in that last post, but I had a little glitch with my laptop

A CBC is a good start, and then a la cart things are added on like the free t3 free t4 (I am thinking tsh might be already included in the CBC at least it was in the one I just had)

But it could go on and on and on, I mean there are hundreds of tests you could get, that's why I am saying you need to find out what she wants to look at specifically.

[ShadowSwallow]

Kass,

Glad you got back for your appointment! Can't wait to hear about it! Heh, I should probably ask the LLMD about this... can't believe it slipped my mind!

Sarah and Andrea,

Wonderful to "see" you two.

Rachel,

That information is fascinating. Especially the part about the histamines. I've noticed that my main symptom when I become more toxic is that simply touching my skin will lead to a welty rash, because of the excess histamines under my skin.

Wow... they took my temperature at the GI's (semi-stressful place) and my temp was 97.6 (or .8). I also have goiter, so the LLMD's testing my thyroid, of course. I'm becoming far more interested in the results of these tests....

[confusedks]

Kassandra, why did he tell you so infrequently?

He is worried about over doing it. He also thinks we need to let our bodies learn how to do things on their own. He thinks doing it every day is too much.

He MAJORLY upped my detox plan, but I will write about what he wants me to do in my update.

[Rachel--24]

Rachel,

That information is fascinating. Especially the part about the histamines. I've noticed that my main symptom when I become more toxic is that simply touching my skin will lead to a welty rash, because of the excess histamines under my skin.

Actually this reminded me that before I ever went on a restricted diet Iwould get marks on my skin simply from scratching very lightly. It was like all the blood would come to the surface....exactly like a "hickey"....and I would get these streaks wherever I scratched my skin. There was alot of jealousy in my relationship and this problem did NOT help matters!

Going off of processed foods totally eliminated that problem. It hasnt happened in over 3 years. I'm betting it was probably due to excess histamine.

I've been reading alot more about the phenols again. I went on the "feingold" diet a couple years back which basically restricts high phenol foods...salicylates, amines, food dyes, preservatives, MSG, Aspartame, etc. The diet is geared toward kids with ADD and Autism because something like 80% of those on the spectrum are sensitive to these compounds.

The only way I can function is by eliminating these foods. The PST enzyme is the problem with phenol sensitivity....its involved in phase II detoxification. The sulfation pathway is not functioning properly and these phenolic compounds reach toxic levels....tie up the PST enzyme and worsen detoxification.

Besides eliminating these foods....other things that help most people who cannot metabolise phenols are Epsom salt baths (discussed alot in this thread) and No-Fenol (enzymes).

The Epsom salt baths provide the body with sulfates which increases PST activity and helps to eliminate phenols.

Most enzymes are derived from fruits or veggies so contain salicylates and may cause problems for those who are sensitive. I havent done well with any enzymes in the past. No-Fenol has shown to help with increasing tolerance of phenols....some kids can increase their intake of fruits and other foods while on No-Fenol.

At the moment, phenol-targeting enzymes seem most likely to benefit those with:

yeast

bowel disorders

phenol sensitivities (having difficulty digesting fruits and vegetables, highly phenolic foods, artificial chemicals and additives)

symptoms such as high ammonia

Those with slight phenol sensitivities may not need phenol-targeting enzymes, or may find best results with only a partial capsule at a time, one fourth, one third, or one half capsule.

I'm going to buy some and have Dr. Amy test it to see if it would help. I already know from previous ART sessions that my body HATES anything "of color".....which is highly suggestive of phenol intolerance. I want to see if things like No-Fenol or Epsom salts help the situation and may possibly allow me to take some supplements I've been unable to take in the past.

I'm hoping she has some insight as to whether or not chelation can "fix" this problem.

Heres some info...

Open Original Shared Link

Open Original Shared Link

Some of the theories about Autism suggest that phenols make the PST so sluggish that heavy metals and other toxins accumulate as a result. I'm not really buying that since I have the same problems but I did not have any symptoms of phenol sensitivity until AFTER I became toxic from heavy metals.

[Rachel--24]

He is worried about over doing it. He also thinks we need to let our bodies learn how to do things on their own. He thinks doing it every day is too much.

Kassandra,

My Dr.'s felt the same way about e-coffee's, saunas and other things that can be too much on a daily basis.

Some people might do ok with it but I think the Dr. has to take into consideration that each patient is different and some may get worse if doing e-coffee everyday. Same with the saunas or any other treatment.

Sometimes we make more progress when we go at a slower pace w/out forcing things too much too fast.

[Rachel--24]

Julie,

Yup....Rachelville was definately a blast during those summer months. Lots of laughs!

I was remembering how TheDave kind of popped in here and was quoting some of the personal stuff I'd posted earlier in the thread. I was like OMG....my BOSS is reading the epic thread!!

I dont know if theres anything more traumatic then having real-life friends find this thread!!

But yeah....it was FUN!! Laughter is just as healing as PINK!!

I do searches now and then to try to locate scientificness from previous pages....its always freakin hilarious when I end up in "Rachelville Gone Wild"!

[CarlaB]

He is worried about over doing it. He also thinks we need to let our bodies learn how to do things on their own. He thinks doing it every day is too much.

He MAJORLY upped my detox plan, but I will write about what he wants me to do in my update.

Hmmm ...... at this point, I think my body needs extra help daily in addition to what it does on its own .... but we all have to listen to our doctors! Oh, and I just thought of this .... I mostly do ecoffee after I've already had a bowel movement .... I do agree with your doctor that your body should be able to do that on its own, I do think that is really important, maybe that's what he's talking about. I think of ecoffee as helping the liver dump toxins .... not helping the body have a bowel movement.

I don't think mine could have gotten me to slow down on them because there was such a significant difference between how I felt on days I did them vs. on days I didn't. That's how I ended up doing them daily. At some point I'll cut back ..... maybe, LOL .... but it won't be till I'm off meds completely.

The guy doing the pancreatic cancer reseach does them daily to prevent cancer .... I think he's been doing them for about a decade .... not trying to talk you into not listening to your doctor .

My Dr.'s felt the same way about e-coffee's, saunas and other things that can be too much on a daily basis.

Some people might do ok with it but I think the Dr. has to take into consideration that each patient is different and some may get worse if doing e-coffee everyday. Same with the saunas or any other treatment.

True .... funny, my LLMD wants me doing saunas every day for detox. When I told him I was doing them 4 or 5 days a week, he said to up it to every day. He was fine with the daily ecoffee.

However, this was just recently ...... he has wanted me to do saunas all along, but at this point he wants to heavily detox to see if it keeps symptoms at bay .... also, he said to use glutathione cream if I have any Lyme symptom at all.

Earlier in treatment, I didn't sauna on bad days, I took epsom salt baths. Saunas seemed to make me worse back then, so it is really personal.

But my LLMD does not have a problem with daily ecoffee. In fact, he told a friend of mine that many of his patients are having good results from them ..... he can't officially "recommend" them, but he passed on what was working for others.

LLMD's each have a different approach .... that's why we all have to find one who we like and stick with his treatment plan!

I dont know if theres anything more traumatic then having real-life friends find this thread!!

Oh, yeah, I never tell anyone where this thread is. The problem is that I see more and more that it comes up when you google something! But I don't think that will necessarily draw my friends here ..... plus, I don't think they're Googling the same things I am!

[dlp252]

I know were you need to put the b-12, in your em pink case lol. Since you always have time to put your makeup on lmao.

:lol: That'll do it! Or maybe I'll use the first pink caboodles box for it.

Donna...I forget my B12 shots a lot of times too, lol! I guess injecting myself isn't memorable enough! LOL!

Must be true for me too, lol.

Donna you could always make a spreadsheet and color code your syringes and other paraphenalia for the shots as an extra reminder

A spreadsheet...why didn't I think of that! OR at least color coding.

I dont know if theres anything more traumatic then having real-life friends find this thread!!

But yeah....it was FUN!! Laughter is just as healing as PINK!!

I do searches now and then to try to locate scientificness from previous pages....its always freakin hilarious when I end up in "Rachelville Gone Wild"!

It was a really fun time, lol. I have some co-workers here with Celiac and one of them told me about this site, and while I don't think she posts here, the possibility is always there, lol, so I try to keep specifics about work very vague...although if they saw my picture they'd definitely recognize me.

[confusedks]

LLMD's each have a different approach .... that's why we all have to find one who we like and stick with his treatment plan!

Yea. This is so true. You have a body that can handle almost anything, LOL! I'd literally be dead if I was on as much stuff as you were on, and my LLMD knows that. So, he is taking things slowly. He also wants me to be able to get a little bit more of a life back if possible, while treating. He thinks it's important to not be miserable while treating.

Not to say that it's really possible to have a life, LOL, BUT it is possible to be less miserable. Also, its funny, because I wasn't the one who said that I wanted them to go slowly, they did. I was of the mindset that herxing hard was good, but they're not.

He was worried that if I herxed too hard I'd end up in the hospital because I could not get out of bed. So, it's a very personal thing. Just like he does NOT want me doing saunas every day. He said no more than 3 times a week.

[confusedks]

I sent out my update. Let me know if someone didn't get it and send me a PM with your email address and I'll send it.

[Green12]

Kassandra,

My Dr.'s felt the same way about e-coffee's, saunas and other things that can be too much on a daily basis.

Some people might do ok with it but I think the Dr. has to take into consideration that each patient is different and some may get worse if doing e-coffee everyday. Same with the saunas or any other treatment.

Sometimes we make more progress when we go at a slower pace w/out forcing things too much too fast.

I totally agree, more (or at a faster rate) is not always better. In my case anything I try to do to detox is too much, so it's very slow going.

I was forbidden to do coffee enemas until I go to a place where my system could handle them. Enemas and colonics in general turned out to be very problematic for me.

.....It's hard to believe that summer of Rachelville fun was almost 2 years ago

[jerseyangel]

.....It's hard to believe that summer of Rachelville fun was almost 2 years ago

OMG--that is hard to believe