map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
-------------------------------------------------------------------------------- My ex BIL has been very ill for the last year. Been to every specialist in town and not a one can give him a diagnosis.
He has horrible GI issues. Well, you know where I'm going. I've been giving my niece info to pass along to her dad.
I told her about almonds and how much they changed my bowels at Thanksgiving get together. Sure enough she told her dad and he started eating them and sure enough he started having some good bowel movement daily.
Then came his appt to Cleveland Clinic. The almighty CC. When my ex-BIL and niece told this highly educated doctor that he was told to eat almonds and he did and he was finally having bowel movements.....
She went ballistic on them. Who told you that? What horrible information to give to someone. Almonds can be the WORST thing for you. Chewed them up and spitted me out.
I guess she's one of those high and mighty intelligent doctors with that big fancy name and degree and she doesn't want some stupid family member trying to help someone poop.
She sent him away from CC without any help. She told him his GI issues come from his back. He's having spasms in back that feel like the pain is in his GI and colon.
He's already had 6 MRIs of the back to see if an old injury was causing this. He's also suffering from depression, mental stuff, pains here and there, insomnia that is driving him even more nuts.
NOW after Christmas I'm calling my ex BIL and going to visit him. I taking a copy of "Bells Palsy of the Gut".
What other powerful lyme write ups would get his attention? I want to print them off and physically hand things for him to read. Not a book at this time.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Stupid doctors!! I would go FIRST for gluten, dairy and Candida.
Those are the three big reasons for gut issues.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Reminds me of the arrogant gi doc that saw me for 7 min and told me to go gluten free to get rid of the pain
2 days later i had emergency appendectomy
If there is history of so called mental problems both Dr S and Dr B have really good writing that Hone in on what makes mental problems with lyme different from others really easy reading too I wish I could get them for you but I'm really in crunch time here. Google might do it
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
That is what has helped me the most .. just passing it along!!
No surprises over here!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
First thing I thought, go gluten free 100% SO many people are having major issues with it,
and going off 100% is worthy. You also mentioned he has constipation-
Well, I have a fresh $1,000 bill from ER due to constipation/ stomach issues, that only Miralax 2x a day could fix initially.
If he is this miserable, usually the misery is what finally gets people to change their diet.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Sorry Tutu about the LLMD doc name and you needing to edit me. Duh?
Thanks everyone. I will find the good write ups and I will not overwhelm him. Plant a seed and give him more than he's gotten from the medical establishment.
So sad.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
bartonella? H. pylori?
Posts: 2888 | From USA | Registered: Mar 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I was thinking about bart too poppy. His sx are all over the place. I've not had one on one with him. All info is from his daughter and she is not sympathetic with her dad always calling her complaining about this and that issue.
In fact he was calling her all the time and she had to get too rude with him(IMO) because she was his only listening/support system. I find that sad that he has very few friends, family he can communicate with. He's a loner type.
She is a chef, young mid 20s with a ton of knowledge about good food and good lifestyle choices. She has her father eating healthy due to her preaching it and teaching it to him. But even a little of bad stuff can make diff with those sensitive.
When others think we are hypochondriacs? When our pain and issues are non-visible and all over the board?
He's on my call list and next week I will call and see him face to face.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Hummphhh...reminds me of the doctor who told me...jus shut your mouth, dont eat, and youll loose weight and youll feel better...
Great advise..but I went to him for lyme...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Well, I finally made the phone call to him this morning.
The doctors have convinced him his pain is in his head. I told him I needed his email address to send him some info.
I pasted "Bells Palsy of the Gut" and after talking to him I realized he was also have horrible burning in one of his feet too.
Hum????? He started having anxiety/panic attacks about 6mths ago. I just reference how his sx could be from vector borne illness.
The cause. I told him about my support group and how every month for 27 mths we've had 2-4 people show up with strange sx and they were told it was chronic fatigue, MS, Crohns, IBS, Parkinson, etc etc.
Turned out they have Lyme Disease and co-infections. His doctor told him he's tested him for everything and nothing is showing up and therefore it's stress and stress will do all types of pain issues to the body.
I just feel better that I've finally said something to him. I've given him an idea.
I wished him the best and told him to please read what I've sent you. All I can do.
Oh, I just remembered I must send him a Dr B/neuro write up too. Thanks lp.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i think thats all you can do without hurting yourself
it took me awhile to learn that...i stressed so much over ppl who didnt get it
i see the same thing still on a regular basis...and all of those shuffleing around and with bells they dont know they have...its everywhere...but you have to take care of yourself first
the group you run is a wonderful was to spread the word and be helpful to others without hurting yourself
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Pam, it sounds like you did your best to help a friend out, that's all you can do.
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