Omg...i Might Be On To Something

[AndreaB]

Bev and Donna,

Extra HUGS for you.

[white]

My husband cannot have corn.

Also, some vitamin pills are covered/coated with wheat. so some might be covered with corn perhaps.. if it is not stated as an ingredient, it is better to check with the companies.

[rinne]

I talked to Hoffman today and he thinks I should treat the Lyme for six weeks and be retested, he agreed the bands were significant but he didn't know if the salt/c could have affected the test. This is the problem with NOT having a Lyme Literate doctor, Integrative or not.

I asked him about the Bowen tests and he says everybody tests positive with Bowen and that either the test is flawed or everybody has Lyme.

As to my having Atypical Lyme, he said the ususal presentation of Lyme is severe heart, arthritic or neurological symptoms and I don't have those. I feel like, so I haven't gotten to that point and I don't want to go there but I feel like I am sliding there.

I am severely Vitamin D and Vitamin B12 deficient and he wants me to take 4000 IU of Vitamin D3 a day for six weeks and Vitamin B12 sublingually 2x a day. He says that may give some relief to the pain I have.

In the end I felt like I was going to have to educate him and that made me feel tired.

And hello White.

[Rachel--24]

Another quick question, does it absolutley positively 100% have to be IGenX???? Can other labs competently do the western blot testing?

Julie,

My understanding is that no...the other labs are not as competent. Specialty labs (specializing in tick borne diseases) are the ones to use. I've only heard of Igenix or Bowen. There is some specific info about why Igenix is better....I will post it later....when I find it. I have to go to BioSET right now.

The tests my Dr. ordered are the Western Blots...both IgG and IgE. They are two seperate tests.

[AndreaB]

In the end I felt like I was going to have to educate him and that made me feel tired.

I don't know what to say Rhonda.

So does he think you don't have lyme? Are there other things aside from lyme that would make the bands positive or IND?

[CarlaB]

Rhonda, how will he treat it for the six weeks? From what I've read, someone with chronic Lyme can be put on tetracycline for four weeks, rest for two, then be retested and more bands come out positive if they have it. Is this what he's doing? If so, he's probably just being thorough, and that's good.

I've read a lot more symptoms than the ones you say he mentioned. I do have the heart, neurological and arthritic symptoms ... though right now it's just the neurological, and I never would have called the heart "severe". I read that if it affects several systems, then it's likely to be Lyme. I would reason that this is why it's hard to diagnose in the day and age of specialized docs who treat the symptoms of the part of your body that is their specialty but don't look at the body as a whole.

[happygirl]

x

[AndreaB]

Laura,

Thanks for the update. Have a great weekend!

Hopefully, you'll get some answers soon too.

[jerseyangel]

Gosh--more uncertainty and no real answers This is gonna be a long haul, I'm afraid.

[georgie]

Rinne,

I am severely Vitamin D and Vitamin B12 deficient and he wants me to take 4000 IU of Vitamin D3 a day for six weeks and Vitamin B12 sublingually 2x a day. He says that may give some relief to the pain I have

I am severely deficient in B12 and found the sublinguals weren't strong enough. They are meant to work as good as shots - but feel that they didn't.

Anyone, What are the symptoms of chronic Lymes? Trying to read this thread but its long Hubbie is ill, and is being tested for everything but in Aust Lymes is so rare that Dr hasn't done that yet. What testing needs to be done ? He lived in England all his life. He can't recall a rash or ever walking in long grass without long trousers.

Rachel what I meant was that you can have a normal blood test result with one Dr, but that Dr`may not understand the new lab ranges. And synthetic meds have areputation for keeping you 80% well only.They make the labs look good but not you

[happygirl]

x

[miamia]

rinnie-

congrats on baby news

andrea-

happy birthday to seth

laura-

have a great thanksgiving!!

[dlp252]

Hi White! Corn definitely seems to be a problem for a lot of people. I think I can have corn, but we'll see. I haven't had it now in over 3 weeks, so it's going to be one of the next foods I add in if I can ever get to a point where I'm not reacting.

Anyone, What are the symptoms of chronic Lymes? Trying to read this thread but its long Hubbie is ill, and is being tested for everything but in Aust Lymes is so rare that Dr hasn't done that yet. What testing needs to be done ? He lived in England all his life. He can't recall a rash or ever walking in long grass without long trousers.

I'm sure someone will see this and answer before I can, but if not, I have some links bookmarked at work, so early tomorrow morning I can post some of those if no one has answered yet. From what I understand, unless his pant legs where tucked into socks, it's possible for those darned things to get in there. The only sumptoms I can remember are fatigue, muscle/joint pain, brain fog...so many others and so similar to many other things.

[rinne]

I don't know what to say Rhonda.

So does he think you don't have lyme? Are there other things aside from lyme that would make the bands positive or IND?

No, he thinks I should be retested after treating it and he thinks it may not be my only problem.

Lyme Disease symptoms:

PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup )

Symptoms of Lyme Disease

The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)

Rash at site of bite

Rashes on other parts of your body

Rash basically circular and spreading out (or generalized)

Raised rash, disappearing and recurring

Head, Face, Neck

Unexplained hair loss

Headache, mild or severe, Seizures

Pressure in Head, White Matter Lesions in Head (MRI)

Twitching of facial or other muscles

Facial paralysis (Bell's Palsy)

Tingling of nose, (tip of) tongue, cheek or facial flushing

Stiff or painful neck

Jaw pain or stiffness

Dental problems (unexplained)

Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Eyes/Vision

Double or blurry vision

Increased floating spots

Pain in eyes, or swelling around eyes

Oversensitivity to light

Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

Decreased hearing in one or both ears, plugged ears

Buzzing in ears

Pain in ears, oversensitivity to sounds

Ringing in one or both ears

Digestive and Excretory Systems

Diarrhea

Constipation

Irritable bladder (trouble starting, stopping) or Interstitial cystitis

Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

Bone pain, joint pain or swelling, carpal tunnel syndrome

Stiffness of joints, back, neck, tennis elbow

Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

Shortness of breath, can't get full/satisfying breath, cough

Chest pain or rib soreness

Night sweats or unexplained chills

Heart palpitations or extra beats

Endocarditis, Heart blockage

Neurologic System

Tremors or unexplained shaking

Burning or stabbing sensations in the body

Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis

Pressure in the head

Numbness in body, tingling, pinpricks

Poor balance, dizziness, difficulty walking

Increased motion sickness

Lightheadedness, wooziness

Psychological well-being

Mood swings, irritability, bi-polar disorder

Unusual depression

Disorientation (getting or feeling lost)

Feeling as if you are losing your mind

Over-emotional reactions, crying easily

Too much sleep, or insomnia

Difficulty falling or staying asleep

Narcolepsy, sleep apnea

Panic attacks, anxiety

Mental Capability

Memory loss (short or long term)

Confusion, difficulty in thinking

Difficulty with concentration or reading

Going to the wrong place

Speech difficulty (slurred or slow)

Stammering speech

Forgetting how to perform simple tasks

Reproduction and Sexuality

Loss of sex drive

Sexual dysfunction

Unexplained menstral pain, irregularity

Unexplained breast pain, discharge

Testicular or pelvic pain

General Well-being

Unexplained weight gain, loss

Extreme fatigue

Swollen glands/lymph nodes

Unexplained fevers (high or low grade)

Continual infections (sinus, kidney, eye, etc.)

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

Increased effect from alcohol and possible worse hangover

Open Original Shared Link

[happygirl]

x

[AndreaB]

Hi Evie!!!

I don't know if you're reading or your computer just still has you on here.

We love you and have missed you!

[rinne]

Hello Evie, we have missed you.

[DingoGirl]

Yeah, we're all hot babes with great hair, too!!!

no no no no, not me, my hair is a crazy puffball now, and getting "fixed" tomorrow - - cha-CHING..... $$$$

Yeah, well, I look like Kramer in the morning.

Just make sure you don't make any racial slurs

I would have blamed my mojo as well - that is until Ms. Beverly from Beverly posted Open Original Shared Link on another thread. Now I'm REALLY CONCERNED about my mojo . If they've run off together I can only imagine...

My mojo is off with YOUR mojos. Where did they go?

Missing my mom this Thanksgiving too. Sorry I'm being a party pooper. I'll try to cheer up!

Bev.....you're never a party pooper. Holidays are so hard......as Andrea (I think?) said, we will cheer you up, just enjoy your hubby and your day. Oh, the Maldives......*sigh* I think that's where Tom and Katie are honeymooning

In the end I felt like I was going to have to educate him and that made me feel tired.

YOu will re-acquire your strength. You will be energized from educating him (okay, wishful thinking? )

Seth - happy birthday!

Julie - hugs to you!

Laura, have a great time.....I am going to cook my whole TG diinner tomorrow and take with me. Harumph!

I forgot everything else.....

Sent a pm to Evie....said, OMG, is it realy you, PLEASE let us know how you are, don't even read all the pages, everyone has Lyme, that's the surmisal, just WRITE somethign to us!! But her mailbox was full.

I know there was more but can't remember. Big trauma at work today, but I am too tired to explain it. It was my brain..... And I walked away from my boss and burst into tears. One of my best friends was in teh store, I had not seen her come in, but she witnessed the whole thing......never mind. I think things will be okay but it is just the same old story....the confusion in my brain.

wub to all I am heading into bed to get warm and read and watch stupid things on tv.

xoxo

[rinne]

Happy girl, I checked out that site but it didn't strike me that anyone was Lyme Literate although they did talk about treating Lyme. I'm getting foggy but will look a little more, remind me if I forget.

Nice to hear from you Susan.

Andrea, I hope you and your family have a wonderful week-end with your Dad.

[AndreaB]

I know there was more but can't remember. Big trauma at work today, but I am too tired to explain it. It was my brain..... And I walked away from my boss and burst into tears. One of my best friends was in teh store, I had not seen her come in, but she witnessed the whole thing......never mind. I think things will be okay but it is just the same old story....the confusion in my brain.

Ahhh Susan....I'm sorry you had such a rough day.

Hugs and Love to you. :wub:

[Rachel--24]

Rachel what I meant was that you can have a normal blood test result with one Dr, but that Dr`may not understand the new lab ranges. And synthetic meds have areputation for keeping you 80% well only.They make the labs look good but not you

Thanks Georgie.

I'm really good at researching everything...I go into my Dr. appts. very prepared. I knew about the new lab ranges over 3 years ago when this was all going down. I studied everything about thyroid....discussed all of my concerns with my Endo. My Endo. was actually pretty fed up with me always telling him everything I'd learned.

He didnt argue with me about anything. He let me try anything I wanted as long as I didnt overdose and make myself hyper (which would then make him look bad)....but I did it a couple times anyway...just to see if I'd feel better. I tried just about every thyroid med available and gauged my symptoms at all of the different levels. I tried to keep my levels as low as possible without going hyper.

The thing was.....my symptoms never changed. My Endo. had told me that my symptoms werent caused by my thyroid....even though they all *seemed* to be and plus I had Graves and had went through RAI. He told me something else was going on unrelated to my thyroid. I wouldnt listen so he let me play with all the meds for a couple years. I tried T4/T3 combo...took my temps every morning....all that stuff.

Eventually I realized he was right and it wasnt my thyroid so I moved on....I've just been taking Armour the past couple years and it works fine. I dont notice a difference between synthetic and Armour but I react to the synthetics because I have multiple chemical sensitivities....so I prefer natural.

I exhausted every avenue when it came to thyroid stuff...just ask my Endo.

[evie]

Hello Evie, we have missed you.

Yes, I am back home finally!! Got home mon.late afternoon, exhausted of course. Nurse in this am and PM dd Carolyn took me back to hosp to have heart monitor checked and renewed.

Have to go back Wed pm, only 60 miles 1 way, that is to be last one, hopefully. Will get a blood test also, then get to stay home a few days. So good to hear from so many of you, good to be remembered by friends!!

DD carolyn will be here till Sat., sure thankful for that..have good dd's ( 3 of them) have all been helping me at some time past few weeks, really helps us. I hope to start getting some energy back soon, but so many DR. appt. over the next month & most 60 mile away. Read many pages tonight, finally jumped fwd.

Hope many of you are finding answers for problems, if not yet hang in there, I plan to also. Love you all, evie

[Rachel--24]

Hi everyone...I read all the posts....dont have time to respond to everyone.

Just know that I you guys.

I SAW EVIE!!!!

Evie.....I hope you are OK...we have missed you and have been very worried. Please post something when you can. We love you Evie!!

Guys....I had a traumatic night.

I got treated for chemicals tonight at BioSET. I had my original BioSET lady again....she asked me if I wanted to start with chemicals or foods!!

I picked chemicals.

I will tell you all about it tomorrow....I asked some Lyme questions too.

I got home from my appt. pretty spaced-out...tired and brain-fogged to the max. Not sure if it was the treatment or what.

Anyways....walked in and my mom confronted me about paying my bills....again.

I just wanted to rest. The chemicals got to my brain...it was drama.....lots of crying.

Now I'm too tired to share scientificness....my mom is gonna give me a good massage and then I'm headed for bed.

Oh...Susan....looks like we had similar experiences today??

G'nite everyone.

[AndreaB]

Yes, I am back home finally!! Got home mon.late afternoon, exhausted of course.

Evie it is SOOOO good to see you!!!

I'm glad you are ok and back home. That must be a relief in itself. Please keep us posted on your appointments and well being. We are here for you.

Guys....I had a traumatic night.

Ahhhhh Rachel. I'm sorry.

Well, if you don't feel like posting tomorrow you may be talking to me three times this week. In other words don't be surprised if you get a phone call tomorrow.

Night. Love ya.

[rinne]

I'm so glad to know you are home Evie, rest well.