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Rachel--24

Omg...i Might Be On To Something

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Guest tamedandfoxed

Donna, Andrea, Others,

for the hair analysis, does the doctor have to be a holistic one?? I'm considering going to see a new doctor, who is a chiropractor but apparently does everything. highly recommended. but i tear up at the thought of going to yet another doctor. the whole, getting my hopes up and then having them crash down really depletes what little energy i have these days.

I'm not digesting any of my food. I don't know what to do. I've tried changing foods, i don't seem to tolerate (digest) anything. It feels like my body has been flung into a hurricane. My sinuses are never clear anymore. I think i need to exercise more.

I know i've asked about Levaquin before--but i'm wondering how taking an anti-biotic has helped you guys... i thought ABs were part of the problem???

Welcome LittleMiss! Sorry i missed your debut! I hope you find what you need here. I feel ya on the anxiety factor. When i eat sugar/starch my anxiety AND depression are almost immediate.

Katy,

You might want to look at an RBC elements blood test. It tests the mineral content of what's in your red blood cells, rather than what's circulating in serum. It can give a better idea of what's in your tissues. The main problem with hair analysis is that it only shows what you're excreting. If your body is holding onto certain things, they won't show. If you do the hair analysis and if you color your hair, pubic hair will work.

Sorry I didn't address everyone. Short attention span still kicking in. Hope all are well. :)

I don't color my hair, and never have, so it wouldn't be a problem--what i need to know if WHO can actually run / order these tests??

Paula, I am so sorry about your diamond! I hope things work out.

~Katy

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I know i've asked about Levaquin before--but i'm wondering how taking an anti-biotic has helped you guys... i thought ABs were part of the problem???

Lyme Disease is a bacterial infection, which is why abx's help.

There can be many issues that go along with Lyme Disease ... like heavy metals, candida, etc. that also need to be treated.

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for the hair analysis, does the doctor have to be a holistic one?? I'm considering going to see a new doctor, who is a chiropractor but apparently does everything. highly recommended. but i tear up at the thought of going to yet another doctor. the whole, getting my hopes up and then having them crash down really depletes what little energy i have these days.

My LLMD (not really holistic, he's a regular MD, but does accept some alternative ideas and testing) ordered the particular test I did. I also go to a clinic founded by two chiropractors (they also have two internists and some physical therapists)...they also could have ordered the test.

The sinuses! Egads...I had THREE horrible years of one continuous sinus infection! It was awful...I was on antibiotics and prednisone nearly the whole time. Mine cleared up when I cut out gluten and dairy but recently flared up again because I've been eating too much chocolate (so really, part of my sinus issue might be candida)...stupid bugs!

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Guest tamedandfoxed
My LLMD (not really holistic, he's a regular MD, but does accept some alternative ideas and testing) ordered the particular test I did. I also go to a clinic founded by two chiropractors (they also have two internists and some physical therapists)...they also could have ordered the test.

The sinuses! Egads...I had THREE horrible years of one continuous sinus infection! It was awful...I was on antibiotics and prednisone nearly the whole time. Mine cleared up when I cut out gluten and dairy but recently flared up again because I've been eating too much chocolate (so really, part of my sinus issue might be candida)...stupid bugs!

Well I called this new Dr's office. Left a message. We'll see.

Looks like i might have to send my computer in for repairs soon. So i don't know when i'll see you guys once i send it in--again, we'll see... sigh.

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for the hair analysis, does the doctor have to be a holistic one?? I'm considering going to see a new doctor, who is a chiropractor but apparently does everything. highly recommended. but i tear up at the thought of going to yet another doctor. the whole, getting my hopes up and then having them crash down really depletes what little energy i have these days.

The MD I got my recent hair analysis through is an integrative MD. I had also gotten one several years ago through a nutritionist. Anyone that can order tests and deals with the alternative (i.e. integrative and holistic MDs, osteopaths, naturopaths, chiropractors) can get them.

You will want someone knowledgeable to interpret the results though.

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Omg im in tears right now. My diamond fell out of my wdding ring and i dont know were it is at. I think i lost it yesterday, but we did so much yesterday, it is going to be hard to back track. My hubby is going to so upset.

paula

Paula,

I'm so sorry! I hope you figure this out! :)

Everyone,

I just woke up! :o It's a good thing I set my alarm because I was fast asleep when it went off, and I have a 1:00 acupuncture appt. B)

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Has anyone else had a porphyrin test for mercury/heavy metals?

This is the test my Dr. ordered....I think I'm taking it on Wednesday.

Heres the info.

http://mercury-freedrugs.org/docs/Porphyri...atPlainsLab.pdf

http://www.oralchelation.net/data/ToxicMetals/data13h.htm

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Has anyone else had a porphyrin test for mercury/heavy metals?

Not yet, but maybe someday. :P

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Omg im in tears right now. My diamond fell out of my wdding ring and i dont know were it is at. I think i lost it yesterday, but we did so much yesterday, it is going to be hard to back track. My hubby is going to so upset.

paula

I'm glad it's covered, Paula. :(:)

Everyone,

I just woke up! :o It's a good thing I set my alarm because I was fast asleep when it went off, and I have a 1:00 acupuncture appt. B)

I woke up at 1:30pm. :P Yep, I'm going to be sooo good at this college thing. Missing classes, etc. :rolleyes:

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Guess who did a casein challenge. :ph34r:

I'm on cloud 9 mentally... totally loopy. Hopefully my GI tract won't catch on, though. :P

Yep, yep, yep...totally know where you are, lol.

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Has anyone else had a porphyrin test for mercury/heavy metals?

This is the test my Dr. ordered....I think I'm taking it on Wednesday.

Heres the info.

http://mercury-freedrugs.org/docs/Porphyri...atPlainsLab.pdf

http://www.oralchelation.net/data/ToxicMetals/data13h.htm

I haven't Rachel, looks like a promising test though :huh:

Hi Birdy, good to see you. Hope you don't have any ill effects from the casein challenge.

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Guest LittleMissAllergy

Hey everyone, just got back from seeing my LLMD and we discussed my symptoms, my results from the celiac disease 57 (Western Blot isn't back yet) and a treatment plan. I know you guys talked about how you kinda liked to see people's results (I think you said that a few posts back? My lyme brain is soooo foggy..) but would you like me to share? Maybe if I post the supplements, antibiotics, celiac disease 57 results and symptoms, you guys might be able to tell me a little bit about what I'm in for. My LLMD pretty much said during the first 2 months I'm pretty much going to feel like death...or in his words "like I'm falling off the face of the earth"...I thought I felt like that now? Oh lord, here we go.....!

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Congratulations on your first appt. :)

Yes, the abx can make you worse before they make you better.

We always like sharing. :) Share what you are comfortable with and we'll talk. :)

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Thank you all for caring today. But i found it. It was under the sofa cushion. I kept telling myself that i had to find it and kept praying. I picked up the last cushion and there it was. I am so happy now. It means so much to me that you all cared, now we can get back to talking about everything else lol

paula

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Guest LittleMissAllergy

Okey dokey, well here it goes...

The abnormalities in the celiac disease 57 panel were:

"Abs. celiac disease 8-celiac disease 57+ Lymphs............44 LOW"

So I've been told that you want it to be around 200. Wow. 44.

and my other abnormalty was:

"MCH............34.5 HIGH"

Don't know what that means.

Okay, so I'll copy and paste the lyme symptom list from the lyme forum and just leave up my symptoms (and maybe I'll add a few):

Symptoms of Lyme Disease

Headache, mild or severe (mild at most times)

Pressure in Head

Twitching of facial (mild eye twitching)

Stiff or painful neck (HORRIBLE. Can't breathe.)

Jaw pain or stiffness

Sore throat, clearing throat a lot, phlegm (okay see this is where it gets weird- I have white spots and severe itching in my nose and ears)

Double or blurry vision (mild)

Increased floating spots (mild)

Pain in eyes, or swelling around eyes (mild)

Oversensitivity to light (mild)

Flashing lights/Peripheral waves/phantom images in corner of eyes (mild)

Ears/Hearing (itching)

Pain in ears, oversensitivity to sounds (itching, sound sensitivity)

Constipation (SO BAD...and grey matter in stool? Anyone know anything about that?)

Irritable bladder

Upset stomach (nausea or pain)

Bone pain, joint pain or swelling, carpal tunnel syndrome (mild)

Stiffness of joints, back, neck, tennis elbow (NECK)

Muscle pain or cramps, (mild)

Shortness of breath, can't get full/satisfying breath, cough (SO BADDD!)

Chest pain or rib soreness (partly due to enlarged spleen but yes)

Night sweats or unexplained chills

Heart palpitations or extra beats (SO BAD)

Tremors or unexplained shaking (only when I exert myself)

Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis (SO BAD)

Pressure in the head

Poor balance, dizziness, difficulty walking (very much so!)

Increased motion sickness

Lightheadedness, wooziness

Too much sleep, or insomnia (insomnia in morning hours and can't sleep in day)

Panic attacks, anxiety

Memory loss (short or long term)

Confusion, difficulty in thinking

Difficulty with concentration or reading

Loss of sex drive

Unexplained menstral pain, irregularity (No period for three years!!!)

Testicular or pelvic pain

Unexplained weight gain, loss (MAJOR WEIGHT LOSS)

Extreme fatigue

Swollen glands/lymph nodes (in neck, swollen spleen)

Unexplained fevers (mild)

Symptoms seem to change, come and go

Pain migrates (moves) to different body parts

Early on, experienced a "flu-like" illness, after which you have not since felt well.

Low body temperature

Allergies/Chemical sensitivities (MAJOR FOOD ALLERGIES...can only eat like 6 different foods)

Actually that pretty much covers it....if someone could, take a look at what's in the parenthesis :)

Antibiotics:

Doxycyline

Biaxin

Nystatin

Supplements:

Liquid Minerals

B50

DHEA

Glutathione cream

B12

B6

TMG

Milk Thistle

Probiotics (two types)

Okay so my main concern right now- my digestive system. I haven't been able to take supplements at all in the past, the constipation gets soooo bad. How is my digestive system going to do this? I don't think I can detox if I'm not moving things along... (I know, TMI right...haha..)

Hope all is well with everyone.

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I've been herxing today, so am not up to a full comment right now.

I want to make two comments on the meds though .... they're good ones.

I would start one at a time, wait three or four days, then start the other, that way you know what you're reacting to if you have a problem. I'm not talking about an increase in symptoms .... I'm talking about so you can tell if you have an allergic reaction. You will have an increase in symptoms, most likely.

Two, watch the sun with the doxy!!! My hands get blistered through the car window with sunscreen on .... I'm on doxy, too, so I wear gloves to drive.

Oh, I want to add ... the Biaxin tastes horrible! The taste would wake me up at night in the beginning. That is a normal side effect. It tastes like you've been sucking on a penny. It goes away .... or you get used to it ... not sure which.

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Not yet, but maybe someday. :P

Donna, its totally non-invasive.....no chelator involved. Just a urine test. :)

Sometimes I have to bring things up to Dr. S. because he doesnt think of everything during our visit....so I usually go there already knowing what types of tests I'd like to have done. This time he mentioned the porphyrin test before I even got a chance to.....I got all excited about it. :D

Anyways, it seems like a good test. :)

For people with kids or people who are not really sure about taking a chelator it seems like it can provide some good info. without having to do the "challenge".

It sounds like it might even be more useful than hair and provoked urine tests.....which as we know dont always give a clear picture.

Thank you all for caring today. But i found it. It was under the sofa cushion.

Yay Paula!!! Thats great news....even though your hubby was very sweet and understanding about it I know that a replacement is not the same as the one you'd lost. So I'm really happy that you found it. :)

"Abs. celiac disease 8-celiac disease 57+ Lymphs............44 LOW"

So I've been told that you want it to be around 200. Wow. 44.

Actually, 44 is not that all that bad. I've seen results much lower. Anything under 60 would indicate that treatment is needed....but you are not that far from 60. :)

Also, 200 is high. I think most Dr.'s want to see the CD57 above 100 and some want to see it above 150 before stopping treatment....but I dont think they are treating all the way up to 200.

Here is an explanation of CD57 results...

CD57 - We have all likely heard of people with HIV/AIDS getting their T-cell counts or celiac disease-4 cell counts checked on a regular basis. Current information suggests that there is a similar population of NK (natural killer) cells called CD57 cells that are known only to be suppressed in the presence of Lyme disease.

Generally guidelines are that a score of < 20 indicates advanced or highly active Lyme disease. Scores of 20-60 are indicative of active Lyme disease where scores > 60 start to suggest that the Lyme infection is less active. A normal test result would be > 200. It is my opinion that treatment is necessary until the celiac disease-57 test score is 150 or above. The lower the result, the more likely a relapse if treatment is terminated.

The test can be an indication of progression of disease or of progress in treatment. However, it should be noted that it is not uncommon to see only small changes in the results until the end of treatment where the results often then jump quickly to higher levels. For now, it is my opinion, that this test can both be used as an indicator of Lyme disease presence and as a marker for when to consider stopping treatment.

Mia posted that newer studies show that heavy metals can also lower CD57 count. I have not looked into that yet but I think it could explain some of the inconsistencies seen in the CD57 if its true.

My own result was 78 (If I'm remembering correctly) and I've never had any antibiotic treatment or any aggressive treatment for Lyme. As of now it doesnt appear to be much of an issue for me.

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Thank you all for caring today. But i found it. It was under the sofa cushion. I kept telling myself that i had to find it and kept praying. I picked up the last cushion and there it was. I am so happy now. It means so much to me that you all cared, now we can get back to talking about everything else lol

paula

Wow, you found the needle in the haystack!!! YAY!

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Welcome Little Miss!

Yes hang in there for the ride because you probably will feel worse for awhile, hopefully not for too long! It took me 8 months on abx to start to see any change and we kept questioning the diagnosis. I'm so glad I stuck with it because eventually it made a huge difference.

Your list of symptoms is impressive! ;)

Hopefully some of the treatments will have a positive impact on digestion, and I'd stay in touch with the LLMD about any side effects you have.

If you can tolerate Vit C and magnesium it would do wonders for the constipation issue. I am using Thorne buffered C which also has magnesium, and I also tolerate a magnesium called Natural Calm. I recently started using an ART practitioner to help figure out what I can tolerate, and that has been helpful.

Sherry

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LMA,

What helps my horrid constipation is stuff called 3MA. It's Magnesium Oxide. I take 6 of those babies almost every night except when I'm taking my DMSA for my heavy metals. This has helped more than anything so far. It's made by Lane Medical. I get it through my health practioner.

Also a cup of Rhubarb tea. Don't know if you can tolerate this but this helps.

Also don't forget the big E (enema) if things just arn't movin for ya. I resort to this on occasion and it really helps.

My GI symptoms are one of the most pronounced of my Lyme symptoms, behind the cognitive disfunctioning.

hth

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Paula, that is such good news! That could have been me...but I discovered in time that the setting was loose and put my ring in a safe place until I can get it repaired.

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I tried those detox foot pads last night. I bought the ones that were recommended on an other thread not the ones on TV. My wife (who is uber fitness woman) also tried them. Both of us had a lot of gross looking stuff on the pads in the am. I woke up at 6am and bounded out of bed. She felt exhausted. We are going to continue on the foot pads for a two weeks and see if the pads start getting less and less "stuff" on them.

I also started trying a product called chlorine dioxide. It is known by the name MMS as well. It made me a little nauseous this morning when I took it but otherwise I like it so far. It's suppose to kill many different things including candida. I don't understand the science yet but it someone using the process of oxidation to bind with and get rid of these pathogens. It also is suppose to bind with the residual toxins they create. I'm curious if it will help with the die off of candida symptoms.

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Well, the fever is gone, at least for the morning .....

LMA, two things that stand out to me are the shortness of breath/air hunger and the dizziness. Will your LLMD treat you for babesia even if your testing comes out negative? Those are babesia symptoms. Do you have a problem with night sweats?

Also, it's most likely the weight loss that has caused the periods to stop. Estrogen is fat soluble, so when you don't have enough body fat, you won't have periods. Runners have problems with this. With treatment this should get better. I used to have to eat a tremendous amount of food to keep my weight up. Now I've gained 10 pounds back and though I still eat way more than the average woman my size, I don't have as much trouble and I'm eating less than I used to.

My GI symptoms are one of the most pronounced of my Lyme symptoms, behind the cognitive disfunctioning.

My GI and cognitive issues were caused by bartonella. Have you seen this article? http://www.healthcentersofamerica.com/information.cfm?id=140

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but would you like me to share?

Yes, we share a lot here, lol...you wouldn't believe how much TMI we give out, lol.

But i found it.

YAYAYAYAYAYAYAY!!!!!!!!

Donna, its totally non-invasive.....no chelator involved. Just a urine test. :)

Sometimes I have to bring things up to Dr. S. because he doesnt think of everything during our visit....so I usually go there already knowing what types of tests I'd like to have done. This time he mentioned the porphyrin test before I even got a chance to.....I got all excited about it. :D

Anyways, it seems like a good test. :)

I see him again in 6 weeks to go over my provoked challenge stuff, so maybe I'll ask him about this too.

I tried those detox foot pads last night. I bought the ones that were recommended on an other thread not the ones on TV. My wife (who is uber fitness woman) also tried them. Both of us had a lot of gross looking stuff on the pads in the am. I woke up at 6am and bounded out of bed. She felt exhausted. We are going to continue on the foot pads for a two weeks and see if the pads start getting less and less "stuff" on them.

Hum, I'm interested to hear more about this as your trial goes on!

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