Omg...i Might Be On To Something

[aprilh]

Hi April, how are the chiggers??

Hi Julie,

The Chigger bites are much better. I stripped my bed and had to wash EVERYTHING. I was worried that we set all our bags from being out of town on the bed and may have brought some in. They are so tiny you can see them. My little boy had about 15 bites!

Thanks for asking!

[confusedks]

I'll be hoping for the best Kassandra. If you have to go in maybe she'll surprise you and not bother you about the lyme.

Thank you! I hope it's okay too.

Oh no Kassandra! I hope Dr H calls you back in time. If not and you have to go just stand your ground, don't let them intimidate you, and just deal with the gyn issue you are there for.

But like Andrea said, maybe they won't make a big deal about it.

I REALLY hope Dr H calls back too! I've been taking my cell phone everywhere!

Kassandra I wish you could go see the gyno i saw a few weeks ago, she was the best! first real doctor who's ever actually LISTENED.

Well the good thing (or bad thing, lol) is that my uncle is really good friends with her, and he asked her if she's "Lyme friendly" and she said "Oh yea, I know all about it." So, we'll see. I hope it works out for the best.

[mftnchn]

Carla, just found out the Dr. E does have Enula and can test me for it with ART; not sure if she tested me last time for it, she did test some Nutrimedix stuff and I don't think anything came up as good for me.

Everyone, I am really feeling better. Yay for Vitamin D (and nattokinase, that maybe is helping too)!

Sherry

[AndreaB]

Everyone, I am really feeling better. Yay for Vitamin D (and nattokinase, that maybe is helping too)!

Yay!!!! :D

[miamia]

Hey all-

I finally caught up. There is too much to comment on an dI am really out of it. I have been ahving a rough time lately thats why I have not been posting much. M body is not happy. I have been being pretty abd with diet choices - its just that everything seems to be sitting bad so I feel like why not eat the wrong things but I know I am just making matters worse. I am going to try to be more disciplined.

I am in a bit of a waiting period becasue my doctors have to consult with eachother and one of them is away for the week. So hopefully they will talk at the begining of next week and I will know what my next step is . All I know is is I can not live the way I have been . Things are just so bad right now.

Sorry I missed out on the festivities of our 2000 page- very exciting!!!

I hope everyone is doing ok. I love you guys and I am going to try to start posting more.

Miamia

[aprilh]

Carla, just found out the Dr. E does have Enula and can test me for it with ART; not sure if she tested me last time for it, she did test some Nutrimedix stuff and I don't think anything came up as good for me.

Everyone, I am really feeling better. Yay for Vitamin D (and nattokinase, that maybe is helping too)!

Sherry

That's great! What brand vit D are you taking?

[confused]

yayyy sherry. Im glad you are feeling better.

I dont have much to say, but I have been reading along lol. Im still feeling pretty good since themold removal of the house Im just staying busy landscaping and painting my kitchen and all the kids activities. I know last year I could hardly force myself out of the house to even watch the kids play outside. Now on most days I am running circles around the kids and hubby lol.

paula

[AndreaB]

I am in a bit of a waiting period becasue my doctors have to consult with eachother and one of them is away for the week. So hopefully they will talk at the begining of next week and I will know what my next step is . All I know is is I can not live the way I have been . Things are just so bad right now.

Hope they can meet first thing of the new week.

Hugs Mia!

Paula,

Glad that removing the mold has made such a big difference in how you feel!

[Nanjkay]

Here is the big list of symptoms:

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

Donna-

I counted. I have 40 of these symptoms. I made an appointment with the LLMD who Carla recommended. He can't see me until the very end of August. I will try to to call occasionally for cancellations.

Thanks again for the help.

Nancy

[CarlaB]

Nancy, you might get in sooner with a PA. They are very good, and you still get to see the doc for about 30 min. of your first appt. When you work through a PA, you see/talk with them monthly and see the doc several times per year.

Of course, Aug. will be here before you know it.

[aprilh]

Nancy,

that is great that you are looking into that.

EVERYONE!

I am going with my friend to take her son to an infectious disease specialist on Monday.

I posted about him before because I think he should be tested for lyme. He is 4 and been sick since birth. Been hospitalized 4 times, had ear tubes twice, tonsils out at age 3, constant immune system issues, allergic to everything under the sun, wierd hives and rashes sometimes, now he throws up every week for no reason - thats the short version. The GI doc and pediatrician don't know what else to check him for so they want him to go to this infectious disease specialist.

He has had an endoscopy to check for celiac - nothing.....many, many other tests.

She wants me to go so I can help ask questions and take notes for her.

I need help thinking of questions and testing that we might need the dr to look into. Anyone have any ideas????

[AndreaB]

Nancy,

I'm so glad you are seeing a LLMD!

April,

I don't know of questions, but I'm sure glad she's taking her son in for testing and that will be able to go with her.

[Rachel--24]

April,

Infectious Disease Specialists unfortunately are notorious for being very unhelpful (to put it nicely)....especially when it comes to Lyme Disease.

My worst experience EVER was with the IDS...hopefully you will have better luck but if he dismisses Lyme dont be too surprised and dont give up!

Let us know how it goes. There are a few tests that might be useful (in addition to Lyme testing) but I dont think it would be anything the IDS would be willing to sign off on.

I'm thinking it would be good to check for gut issues....yeast/bacteria. There are a couple good tests for this. My IDS didnt even believe in yeast overgrowth.....we had a big arguement about it and I was told that any positive results I'd had from diet changes was a placebo effect.

This narrowminded type of thinking is common with IDS's but I think things are changing because of yeast being one of the more common problems found in autism.

[dlp252]

I counted. I have 40 of these symptoms. I made an appointment with the LLMD who Carla recommended. He can't see me until the very end of August. I will try to to call occasionally for cancellations.

Thanks again for the help.

You're welcome! I'm so happy you are going to see him! August really isn't all that far away, lol!

I need help thinking of questions and testing that we might need the dr to look into. Anyone have any ideas????

Yeah, what Rachel said...I'm hoping this one will be more up on things.

[aprilh]

April,

Infectious Disease Specialists unfortunately are notorious for being very unhelpful (to put it nicely)....especially when it comes to Lyme Disease.

My worst experience EVER was with the IDS...hopefully you will have better luck but if he dismisses Lyme dont be too surprised and dont give up!

Let us know how it goes. There are a few tests that might be useful (in addition to Lyme testing) but I dont think it would be anything the IDS would be willing to sign off on.

I'm thinking it would be good to check for gut issues....yeast/bacteria. There are a couple good tests for this. My IDS didnt even believe in yeast overgrowth.....we had a big arguement about it and I was told that any positive results I'd had from diet changes was a placebo effect.

This narrowminded type of thinking is common with IDS's but I think things are changing because of yeast being one of the more common problems found in autism.

I was afraid of this. If it were me, I would take him straight to the LLMD or something similar.

I am going to definately request lyme testing, but I am afraid she will not use the Igenex labs.

Thanks!

April

[Green12]

April, glad the chiggers are better. Good luck with this IDS Dr, I hope he has an open mind and that it is a positive experience. I don't have anything to add about what to ask, I would think infections and yeast like Rachel said. Immunization complications? Not sure if an IDS deals with that.

Mia, (((HUGS)))

Sherry and Paula, glad you guys are feeling better.

Kassandra, that's good new the Gyn knows about lyme if you end up having to go to her.

Nancy, YAY, glad you made an appt. I agree that Aug will be here before you know it.

[nora-n]

I have posted about autism and vitamin D recently and the link to the front page for the vitamin D council is Open Original Shared Link and if you scroll down a little bit there is a link to the autism and vitamin D.

D increases Glutathione levels in short.

I wish someone started a blog just to keep the interesting links from this thread for reference. Some people on the thyroid forums have a personal blog for keeping their links. (congratulation with the 2000 pages, and with all the progress people have made)

nora

[confusedks]

Update on me: I had an "inner" pelvic ultrasound and guess what?! I am FULL of cysts. My ovaries are "textbook" for PCOS. The Dr didn't even ask me about Lyme, etc. and she was SO so sweet. She said that this is extrememly urgent.

She is sending me for a full evaluation with an endocrinologist. We are trying to get an emergency appt. next week. Unfortunately we have to have tests run before we stop the bleeding. All the endo's I have been reffered to are SO full! But I'm trying to use my connections.

Basically, every time I have gotten my period, another cyst has formed in each ovary. Usually the ovaries make follicles and they're released and that's what causes your period, but mine don't know how to release. They need progesterone to do that, and I don't have any.

I'm trying to not stress, but she said that fertility will be a problem. What we are going to try to do after the endo evaluation is "pop" the cysts with really strong hormones. She is thinking about what she wants to put me on, and will let me know.

The endo is going to run "lots" of tests. Glucose tests, hormone tests, possible MRI of my brain. So all the testing will take a while, so we're waiting to find out if I can get in on Monday on an emergency basis and they can run all the tests in a day or two, then we'll be able to stop the bleeding.

But if I can't get in, we'll have to make an appt for about a month away from now, so we can stop the bleeding and then I'd go off the hormones and they will then run tests.

I want to get in right away, but the Dr said it will be a couple weeks worth of testing, so we might not be able to do that.

Ughhhhhhhh, so much to digest. Not to mention we weren't going to see the OB/GYN until Tuesday but the bleeding was so out of control they told us to get there immediately.

Quite a whirlwind day.

[AndreaB]

Boy that sounds confusing Kassandra.

Hoping you can get seen real soon....

[CarlaB]

Sorry Kassandra. Keep us posted.

How much of a problem did they think fertility would be?

[dlp252]

Oh Kassandra, what a day!!!! Wow!

[confusedks]

Sorry Kassandra. Keep us posted.

How much of a problem did they think fertility would be?

She said that if I tried to get pregnant soon, it would never happen. We have to see if we can get all the cysts to "pop" so there is room in my ovaries for pregnancy. She kept using the words "severe" and "not good" and "bad case of PCOS." So I don't really know.

She is "very" concerned about fertility. Through all of this health stuff, I have hung on to the fact that one day I will have kids...that is what I have lived for. So this was very upsetting to me.

Over the next 3-6 months they will monitor me closely, and I will have to start BCP...but it has to be a really high dose, so we can hopefully get the cysts to stop forming.

The biggest concern is that my ovaries will get too full of cysts and they won't be able to take it anymore.

Oh Kassandra, what a day!!!! Wow!

Yes, a LONG day! LOL! And we're still trying to fight the clock to get an appt with an endocrinologist.

[Rachel--24]

Quite a whirlwind day.

Kassandra...sorry you're having to deal with this now on top of everything but hopefully this will sort out the bleeding problems and hopefully they can get things figured out so that in the future you wont have the fertility problem.

[Nanjkay]

Nancy,

that is great that you are looking into that.

EVERYONE!

I am going with my friend to take her son to an infectious disease specialist on Monday.

I posted about him before because I think he should be tested for lyme. He is 4 and been sick since birth. Been hospitalized 4 times, had ear tubes twice, tonsils out at age 3, constant immune system issues, allergic to everything under the sun, wierd hives and rashes sometimes, now he throws up every week for no reason - thats the short version. The GI doc and pediatrician don't know what else to check him for so they want him to go to this infectious disease specialist.

He has had an endoscopy to check for celiac - nothing.....many, many other tests.

She wants me to go so I can help ask questions and take notes for her.

I need help thinking of questions and testing that we might need the dr to look into. Anyone have any ideas????

Hi April-

Can't think of any questions but I thought of a story. My best friend's daughter Sarah has also been sick since birth. Severe allergies to everything also. About a year ago, she passed the 'wheat" challenge, she put Sarah on it, which means gluten. Six months later she was constipated, and reversed her potty training. Anyway, I asked my friend if Sarah was on ABX as a baby. She said she was at 3 days old because of her upper respiratory infection. She had to go on them or she would have died. Anyway, without any testing Sarah got off gluten. She has gained weight, she's gaining weight, her hair is thicker, the dark circles under her eyes are gone. To quote my friend, she told me today "By the way, Sarah is pooping like a champ!". She has only been off of gluten for 3 months max.

Anyway- when there are allergies like that, I believe the gluten has to come out of the diet, at least until the stomach can heal up a bit.

nancy

[mftnchn]

That's great! What brand vit D are you taking?

Vital Nutrients. I had ART testing on several samples, this is the only one that worked.

Sherry