son over 30 was to see Dr Lapp tomorrow. We hit a deer so he cannot get there.

[hensue]

Everyone is fine but the deer are running like crazy. Two nice size deer hit the car we were all in and now to get it fixed. On the other hand talked to Pam and we are going to make another appt with Dr Lapp. Whenever we ( meaning all of us can go).

Let me ask you something. He was fine while he was home. No pain still some anxiety but good. Now he gets back to NC and same old stuff.

Did the family just get his mind off of things?? He is now back to pale stools fatigue itching and convinced he is dying. He is coping with back issue pretty good. Going off the deep end on the other.

How many people here have good results with Celiac diet?? He was born with lactose intolerant up till five and now drinks milk.


Take care
Hope everyone had a Great Thanksgiving!!!

 

[taniaaust1]

Everyone is fine but the deer are running like crazy. Two nice size deer hit the car we were all in and now to get it fixed. On the other hand talked to Pam and we are going to make another appt with Dr Lapp. Whenever we ( meaning all of us can go).

Let me ask you something. He was fine while he was home. No pain still some anxiety but good. Now he gets back to NC and same old stuff.

Did the family just get his mind off of things?? He is now back to pale stools fatigue itching and convinced he is dying. He is coping with back issue pretty good. Going off the deep end on the other.

How many people here have good results with Celiac diet?? He was born with lactose intolerant up till five and now drinks milk.


Take care
Hope everyone had a Great Thanksgiving!!!

Ive no idea what the mold situation is like in NC .. but some who do better in some places then others, it can be mold related. (also consider weather differences).

 

[maddietod]

Yes, mold jumped into my mind as well. The worst kinds aren't visible - sometimes they look like a white powder. I had my house air-tested for mold, because I know I have it in my basement.

I'm off dairy (including sheep, goat) and gluten. It helps. But if he was eating the same foods away from home as at home, that wouldn't make sense as the immediate trigger for current symptoms.

if he's chemically sensitive, other possibilities are things like soap that he only uses at home, dust mites if, for example, the away-house had wood floors, etc. What's different at your house?

A way to think about it is: contacted (anything touching skin surfaces), inhaled (including smoke, dust, cleansers, mold), ingested (all food, drink), and things that puncture the skin: insect bites.

I'm interested to hear what you figure out! Good luck with this.

Madie

 

[hensue]

I do have all wood floors and no carpet. He has animals in the house I dont. I do not drink milk and he did not drink milk at home. He drinks a lot at his home.
His house was built about 3 years ago mine 40 years ago. Both are brick homes. He has 4 children under his roof and I do not. He had people and family all the time around him. At home he is totally by himself. He does not have a basement and neither do I. He does have those plug up scents in the walls of his house everywhere I do not. My home was more open because we got up to 79 one day. So we were outside a lot. He stays home and plays those stupid games on xbox.
I hate those games I think they are terrible for anxiety. He says it is a distraction. Do you think it is rational for him to cry and keep saying he is dying or feels like he is? Why? he was extremely fatigued, pain in back from riding and pale stools.

 

[justy]

Hi Hensue, so sorry to hear about the car (and the Deer), what a pain that you have to book another appointment - after all you have both been through!

It sounds to me like there are a lot of differences between your two homes, most notably that his is new and also has carpets. New houses are much worse for environmental contamination and if he has carpets they will be outgassing, leaking chemicals etc, as will the rest of the house, if he is reacting to chemicals then those plug in air fresheners are a nightmare. He will probably also feel better away from thye noise and activity of a large family. When i was at my most ill i had all 4 children at home still and my anxiety levels were through the roof - the noise etc was way too much for me. Now i am a bit better i can tolerate it, but at one point couldnt bear to eat with them and had to lock myself away in my room for most of the time because the environment was way too stressful for my system. I think anything that distracts from the anxiety is good, but video games can be quite stressful in themselves - especially violent/graphic imagery - but he is a big boy and must decide.

I was interested to see you said that he was lactose intolerant as a child. It is not something that is normally grown out of so he may be lactose intolerant still (very likely) - pale stools could also be caused by liver or gall bladder problems - didnt you say before he had liver tests that were not right?

I do hope you get some answers soon. Sounds like whatever happens he needs a change in his circumstances to help him to get better/cope.
Take care, Justy.

 

[hensue]

Thanks Justy,

He needs to change some circumstances around him but he does not want to leave his daughter. He would be 2 states away. He has no room he sleeps on the couch.

He has had slightly evlated alt enzymes. Done an ultrasound on liver and abodomen and cat scan everything was ok. He is going off Cymbalta and going back on Celexa.

When I am there I have to go for a ride. He sees no way out!

 

[fred9339]

Didn't Find Lapp valuable

His website should just state that he recommends Ampligen and that is it....if you are not willing to spend $1300 of your own money then forget it. As a higher functioning CFS sufferer (but quality of life still not good), he obviously thought I was overstating my situation and said that I am just "unwilling to accept my situation." He will not recommend anything that isn't scientifically proven to improve the lives of patients in at least 50% or > of patients. Apparently, Ampligen is the only one he has settled on as meeting that criteria. Much anecdotal evidence suggesting the contrary....you have to have faith and he didn't inspire it.

Nice guy, but $1300 shorter and 2 days unpaid work was disconcerting. He had plenty of labs from prior tests and could have identified many areas where other doctors have had shortcomings in their clinical observations. I have been charting my own course for many of my physicians and spending much time convincing them based on research I have done, and felt no different in this case.

For example, Lyme is a strong possibility in not just me but everybody. As a patient, you want to leave no stone unturned because there is a root cause of your affliction and some we are still getting to the bottom of. Paying him that kind of money to have him tell you to take Ampligen is a waste if you cannot afford.... and his price for phone correspondence is ridiculous. His point of reference for me was a patient who went off all his supplements and on Ampligen was a rich, American expatriate who works in Chile. If we could all be so lucky as I'm scraping by as many of us are.

I wish you son well. Pale stools indicative of liver/gallbladder congestion....no brown, no bile. Done many liver cleanses and has always improved along with sleep, fatigue. I blow a ton of stones everytime I get to that point. Itching improves with the liver/GB cleanse as well. One of the best things I discovered in improving my health when things get bad is this. It is something you indefinitely have to do as maintenance or your body.

Best wishes,
Chris

 

[August59]

I like Dr. Black better than Dr. Lapp.

 

[Athene]

Hi Hensue,

I'm really sorry to hear about that incident on the way to the doctor. That is such bad luck!

The pale stools mean your son is not secreting bile. Therefore his body's main channel for eliminating toxins is closed, and also his digestive enzyme for releasing all fat soluble vitamins and other nutrients is absent.
This type of poo is called steatorrhea (yes, some poos have their own name - do some searches on it!) and it means his liver is sick.
The itching is also indicative of liver problems.

I would try to get him to a liver specialist if I were you. There are many tests, the trio of GOT/GPT/Gamma GT tests are just the very basic ones. And you can tell very little from scans. My little boy had steatorrhea and then his liver completely packed up, he ended up hospitalised having IV rocefin and being fed IV as well because his digetive system couldn't handle food. I learned from the doctors then, who were extremely good, that there are loads of ways your liver can go wrong and you need a specialist to unravel it. It could be anything from a toxic situation to parasites to an enzyme or hormone imbalance to a bacterial or viral infection.

Also, may I reiterate as everyone else has already said...

Your son is in a house full of animals wafting hairs and allergenic skin cells at him and impregnating the carpets with dustmite food
He's breathing in phenols and formaldehyde and other poisons from those plug-in stink bombs
He's absorbing electromagnetic waves from an X box for long stretches (I don't know how widely this affects people with CFS, but for those of us with Lyme disease, it activates the Borrelia into a frenzy of toxin production)
He's not breathing oxygen-rich outdoor air so becoming more hypoxic
Possibly getting exposed to environmental mould which is allergenic and toxic
and filling himself with milk which can cause structural damage to the brush border of the intestine (leading to malnutrition), as well as an allergic reaction, possibly leaves lactose in his intestine to feed harmful bacteria, and produces caseomorphines which can cross the blood brain barrier and play tricks on your brain causing incessant pain and psychological symptoms.....

If I were in a house like that, well, I wouldn't just think I was dying, I would probably BE dying! hearing all this, personally, I think you just need to get him out of there. I understand that he doesn't want to leave his daughter, but I am wondering how much of a relationship he is able to have with her in his current condition. Have you spoken to his wife to ask her what she thinks would be best? For him and for the rest of the family?
I am wondering if maybe he has reached the point where you and she need to start making decisions for him?

 

[aquariusgirl]

I had the same experience as Fred.. years ago. An expensive work-up.. & even then he wasn't sure I had cfs. Recommended new sleep meds, and a bunch of vitamins. Nice guy....total waste of my time & $$.

 

[hensue]

Went to doctor gastroenterologist?? spelling? Thank goodness no hep c and no giardia. Still no answers but I got him off cymbalta and he does not seemed so fatigued.
The docs have given him an ultrasound of abdomen and cat scan and one more I cant remember. His alt was just slightly elevated but he is nauseated at times and back on the right is hurting only some pale stools not all the time.

Basically those docs said it was all his panic disorder and depression. ok that causes a white stool??? no one has answered that question yet. Told him he had been reading the internet to much.
I really appreciate all the answers I have gotten. I have been back one day and he calls same story.
For a second opinion I am thinking of taking him to Shands in Gainesville fl. Have not really looked into it yet.

I would like to know what the best liver cleanse to suggest to him? I have him taking milk thistle and b's.

 

[hensue]

I am rattled it was not dr Lapp it was Dr Cheney he was going to see in NC. I really am at a loss what to do? Can you tell?

 

[August59]

Lapp is in Charlotte, NC and Cheney is in Ashville, NC. Where was he going?

 

[aprilk1869]

Has your son been tested for pancreatic insufficiency?

 

[hensue]

Dr lapp in Charlotte nc not Cheney. How do you test for pancreactic insufficiency?