It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Hospice Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 04-26-2007, 03:22 PM   #16
Veteran
(male)
 
Join Date: Aug 2004
Location: west central ohio
Posts: 453
ohio hunter HB User
Re: Ohio Hunter Too Healthy For Hospice

6Blues, I can remember the despair that you talk of. I agree, I have good family support, with Nancy and my son. You must remember if you have accepted The Son, Jesus, and have him in your heart, that you are at the right hand of the Father. The devil plays with the mind by thoughts of doubt, worry, and fear, and you need to reject taking them into your heart. It is difficult when you feel isolated, but you must try and keep only positive thoughts, one of the principals of the bible is the law of think, speak, do. what ever you think on, you will talk about, what you talk about you will eventually do. You must keep Jesus at the head of your mind, and think on positive things, and while life will not immediately turn around, you will cirtainly feel better and not so lonely. You are never alone, even if no one in this world is with you, the Kingdom of God is all around you all the time, and you have the support of the Lord behind you all the time. There is no such thing as a coincedence, and nothing "just happens" all things have a purpose and if you wait on God, he WILL reward you for your patients. We had a bible study at our house the same night I read your post, and it was about this very thing, feeling alone and isolated from God. It was no small thing that we got an answer to your concerns, so we knew we needed to share it with you. Please continue to share your feelings with us. As you know we are all scattered around the country, but we are all in this togeather. You are not alone, and while we may not be able to do much to physically help you, my family and I are always here for you if you ever need to vent.


Maureen, we have 45 family members who get togeather around the holidays, and Nancy has asked for help with my care from everyone to sit with me and do e-mails and post on here, and no one has come. Have you asked your girls directly with a specific task, such as vacuuming and dusting, and let them know how much it would mean to you to have them to pitch in and help. Put them on the spot. Are you using suppliments to help with detox and rebuilding? We use them constantly and it has helped a great deal.

Deb, you can have your brother get in contact with Dr. Jernigan and he can make recomendations for suppliments, over the phone or e-mail. My lungs seem to be producing mucous, and I need traech suction several times a day, and this is probably a result of one of the co-infections. I get prescription scopolomine patches to dry some of that up, and i also take a benedrill at night, and use suppliments called marshmallow root, and bitter orange, to help also.



To everyone, thank you for all of your prayers and kind words of support. I can not tell you all how much it means to me.

Jon

Last edited by ohio hunter; 04-26-2007 at 03:41 PM.

 
Sponsors Lightbulb
   
Old 04-27-2007, 09:55 AM   #17
Member
(female)
 
Join Date: Jan 2007
Location: tn
Posts: 98
silentstones HB User
Re: Ohio Hunter Too Healthy For Hospice

Quote:
Originally Posted by ohio hunter View Post
6Blues, I can remember the despair that you talk of. I agree, I have good family support, with Nancy and my son. You must remember if you have accepted The Son, Jesus, and have him in your heart, that you are at the right hand of the Father. The devil plays with the mind by thoughts of doubt, worry, and fear, and you need to reject taking them into your heart. It is difficult when you feel isolated, but you must try and keep only positive thoughts, one of the principals of the bible is the law of think, speak, do. what ever you think on, you will talk about, what you talk about you will eventually do. You must keep Jesus at the head of your mind, and think on positive things, and while life will not immediately turn around, you will cirtainly feel better and not so lonely. You are never alone, even if no one in this world is with you, the Kingdom of God is all around you all the time, and you have the support of the Lord behind you all the time. There is no such thing as a coincedence, and nothing "just happens" all things have a purpose and if you wait on God, he WILL reward you for your patients. We had a bible study at our house the same night I read your post, and it was about this very thing, feeling alone and isolated from God. It was no small thing that we got an answer to your concerns, so we knew we needed to share it with you. Please continue to share your feelings with us. As you know we are all scattered around the country, but we are all in this togeather. You are not alone, and while we may not be able to do much to physically help you, my family and I are always here for you if you ever need to vent.


Maureen, we have 45 family members who get togeather around the holidays, and Nancy has asked for help with my care from everyone to sit with me and do e-mails and post on here, and no one has come. Have you asked your girls directly with a specific task, such as vacuuming and dusting, and let them know how much it would mean to you to have them to pitch in and help. Put them on the spot. Are you using suppliments to help with detox and rebuilding? We use them constantly and it has helped a great deal.

Deb, you can have your brother get in contact with Dr. Jernigan and he can make recomendations for suppliments, over the phone or e-mail. My lungs seem to be producing mucous, and I need traech suction several times a day, and this is probably a result of one of the co-infections. I get prescription scopolomine patches to dry some of that up, and i also take a benedrill at night, and use suppliments called marshmallow root, and bitter orange, to help also.



To everyone, thank you for all of your prayers and kind words of support. I can not tell you all how much it means to me.

Jon
hi ohio hunter , thanks so much for the info . i talk to her (his wife ) tomorrow.and i'll tell her . he has started keeping up with your post. so if you feel inprested to say any incouraging word to anyone they would be good candidates as to how they are just going through fires of this wicked disease right now .i just don't get why doc.s don't recognize this as lyme . if he'd of lived anywhere eles he would have gotten treatment imedietllly(SP) . he hase pulled hundereds of ticks of of himself over the yrs. . it's crazy! they won't even listen to him about it. he has been tested and has shown some bands +++ . just not enough for cdc to say pos. you know the story it's repeated over and over through out this forrum. any way as for me i get my pic put in today at 1. and it's 12 now so i've got to get . thanks again . deb p.s his name is Ric. or i like #1deerslayer

Last edited by silentstones; 04-27-2007 at 09:58 AM.

 
Old 05-21-2007, 08:54 PM   #18
Senior Veteran
(female)
 
Join Date: Jun 2005
Location: MN
Posts: 686
Roman77 HB User
Re: Ohio Hunter Too Healthy For Hospice

Jon my heart is so happy to hear from you and to hear how far you've come!!!! Like everyone has already said your fight is inspirational. I remember times when you could no longer post and things looked very dark. It is such a blessing to see you posting and to hear your news.

You have, along with all my other friends here been in my heart and prayers the past months. I haven't been on the board for a good while as I am finally enjoying my own amount of recovery but I can definitely say that I am so happy for you, to see you posting again, and even though not being able to get the hospice care at least you have the blessing of such improvement. I hope that it will continue on!

I will be praying for you and your family, keep fighting and keep getting well. You and your wife and son are an inspiration to us all. Take care of yourself.

Prayers,
Shanna
__________________
"Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

 
Old 05-22-2007, 08:48 AM   #19
Senior Veteran
(female)
 
Join Date: Jan 2005
Location: connecticut
Posts: 657
outinthe_woods HB User
Re: Ohio Hunter Too Healthy For Hospice

Shanna: It was so good to see your post to Jon & Nancy. They and you and all the "old Lymies" are constantly in my thoughts and prayers....

Thankfully, we have each other for inspiration, even through the bad times and I'm grateful for all of you!

 
Old 05-22-2007, 10:51 AM   #20
Senior Veteran
(female)
 
Join Date: Aug 2005
Location: North Carolina
Posts: 1,247
Pearlscale HB User
Re: Ohio Hunter Too Healthy For Hospice

Shanna & Gerri, I was very glad to see both of you post. Just thinking of you yesterday.

Hope Jon will give us an update. Jon you and family are in my prayers.. As are all the rest.
Marsha

 
Old 06-15-2007, 10:00 AM   #21
Newbie
(female)
 
Join Date: May 2007
Location: Tracy, California
Posts: 6
karenjl1 HB User
Re: Ohio Hunter Too Healthy For Hospice

It sounds like my husband is going down a similar road that you have travelled. He was diagnosed with ALS in 2005 and is now in a subacute facility and on a respirator. He doesn't have the use of his arms or legs now. We're currently doing testing for Lyme, but I'm worried that it will come out negative and then the doc won't treat him at all. I haven't found any docs here in the Central California valley (Modesto) that has knowledge physicians on this subject. I don't know what else to do.

Karenjl1

 
Old 06-15-2007, 11:42 AM   #22
Senior Member
(female)
 
Join Date: Jun 2005
Location: Delaware
Posts: 236
dianneom HB User
Re: Ohio Hunter Too Healthy For Hospice

Hi Karenjl1, Make sure the Lyme testing is done at IgeneX.

 
Old 06-15-2007, 01:42 PM   #23
Newbie
(female)
 
Join Date: May 2007
Location: Tracy, California
Posts: 6
karenjl1 HB User
Re: Ohio Hunter Too Healthy For Hospice

Thanks Dianneom! I had already read everyone's comments about Igenex and requested the subacute send for the free test kit. I didn't see what tests the MD ordered, but we're sending them to Igenex. The ID doc has treated some Lyme cases and said he did have symptoms of Lyme. Did anyone out there have lumbar puncture testing as a part of the testing? (The ID doc just wondered if we had that done at Stanford and we didn't. They also didn't do any Lyme testing and we lived in Connecticut for three years.)

Karenjl1

 
Old 06-16-2007, 03:16 AM   #24
Senior Member
(female)
 
Join Date: Jun 2005
Location: Delaware
Posts: 236
dianneom HB User
Re: Ohio Hunter Too Healthy For Hospice

I had a lumbar puncture but I'm not the best person to ask about this. My fluid was sent to Quest, who used too much on the MS test and then didn't have enough to do a Lyme test. If I remember correctly Lyme will only show 5% of the time in spinal fluid.

 
Old 06-16-2007, 07:10 AM   #25
Senior Veteran
(female)
 
jojo's Avatar
 
Join Date: Mar 2006
Location: California
Posts: 2,779
jojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB User
Re: Ohio Hunter Too Healthy For Hospice

That is correct...it is only like 5% for showing Lyme through a spinal Tap...I had one and nothing showed...

Are you going to a LLMD? They go on clinical symptoms...and have the knowledge on treatments...

Good Luck to you!


 
Old 06-16-2007, 10:11 PM   #26
Newbie
(female)
 
Join Date: May 2007
Location: Tracy, California
Posts: 6
karenjl1 HB User
Re: Ohio Hunter Too Healthy For Hospice

I'm not savvy yet on the Lyme lingo. What is an LLMD? We're only at the stage of trying to get him testing for the Lyme. The ID doc has left orders to schedule a lumbar puncture. I've heard that the lumbar puncture can identify bacterial-related causes.

 
Old 06-17-2007, 08:10 AM   #27
Senior Veteran
(female)
 
jojo's Avatar
 
Join Date: Mar 2006
Location: California
Posts: 2,779
jojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB Userjojo HB User
Re: Ohio Hunter Too Healthy For Hospice

Hi Karen....LLMD is Lyme Literate Medical Doctor...a doctor that specalizes in Lyme Disease and it's co-infectioins...

I have learned through experience that spinal taps are no good. I had one and it knocked me down for days...and it showed nothing...IF I were you and what I know now I woiuld spend my time and money getting to a LLMD....It will help you get treatment alot sooner...Not too many Iinfectious Disease doctors will even open their minds to Lyme. The one I went to in Roseville totally poo-pood the idea...And I knew when I had been bitten.

You are close to Dr. Stricker in San Fran, Dr. Harris, he has a office in Palo Alto, and in Nevada City...and a couple more somewhere else. His Dad has the Igenex Lab. There is also Christine Green...I knew someone that had gone to see her and liked her....Also look at the top of the board and see if you can find any more in your area. If need be maybe you will need to fly to see someone....

Also please know that not all lyme test are accurate..I showed a couple of bands and a slight positvie AFTER I was on a picc line for almost 7 months. Doctors HAVE to go on symptoms.

Good Luck.....






 
Old 06-17-2007, 05:53 PM   #28
Senior Veteran
(female)
 
Join Date: Jan 2002
Posts: 5,818
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Ohio Hunter Too Healthy For Hospice

Hi karenjl1, welcome to the board.

I am sorry your husband is so sick. How long has he had symptoms? Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Spinal taps show Lyme in less than 5% of cases. I do not think a Lyme doctor would order this test to test for Lyme. You may want to reconsider if this is the only reason you are having it done.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

The doctors jojo named are knowledgeable. Dr. Raphael Stricker in San Francisco and Dr. Steven Harris who has offices in Palo Alto, Malibu, Nevada City, and Long Beach come highly recommended. I have heard that Dr. Christine Green in Los Altos is knowledgeable.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

I hope you can get some answers soon. Keep us posted okay?

 
Old 06-18-2007, 07:16 AM   #29
Newbie
(female)
 
Join Date: May 2007
Location: Tracy, California
Posts: 6
karenjl1 HB User
Re: Ohio Hunter Too Healthy For Hospice

Thanks Ticker and JoJo: We lived in Connecticut for about 3 years (1987 thru 1990) and Michael was fine then. He has a great immune system and was never sick. When we moved to New Mexico (lived there 7 years) a great fatigue settled in on him which was very hard because he'd never had energy problems. Then his joints -- especially his hands and hips/back -- started giving him problems. We just thought is was arthritis at the time. I noticed a fogginess in his thinking from time to time that I didn't understand. As time went on (we had now moved to Washington State) he started having other problems, including sleep disturbances/problems, severe headaches, severe back problems. He has high pain tolerance and ignored a lot of this. He got transferred to California in 1996 and problems continued. By 2000 I was convinced that he had rheumatoid arthritis. We started the MD appointment process and no MD could find the problems. I was amazed that when we went to a rheumatoidologist and he test Michael -- he concluded that he didn't have it. I was really confused then because his joints were so bad. The orthopedist took an MRI and he said his back was fine. Anyway, I can't even begin to explain all the medical MDs, Stanford, testing,etc., that we've been through these last 5 years, but the result was that he got LABELED with ALS and no MD would even look beyond it and try to help him. He got shuffled away in a subacute on a ventilator and NO ONE has paid attention to him since.

I did get Dr. Salah Bibi in Modesto to come out last Wednesday and see him. He's not extremely experienced in Lyme -- but has seen and experienced enough to see amazing things -- so I think he's open. He saw Michael and told me that he does feel he has symptoms of Lyme, so he's going to treat him. He was on his way out of the country for a few weeks on a vacation, but he started him on Rocephin (spelling?). In just three days, I've seen Michael make improvements -- he couldn't move his arms at all and push his call button and last night he was able to move his left arm and push the button. He has strength to talk when I put his cuff down -- which he couldn't do last week. Also, he was able to suck water up his straw, which had been extremely difficult last week. The other things was that his mind was so out of it or foggy he really couldn't give my any coherent thoughts. He had gone downhill so fast and so far however, that I don't know how much he can return. This Dr. Bibi told me that every case was different and he treated a man five years ago that was totally disabled and the disease had gone into schizophrenia. He started treating him and he has now returned to work. I'm hoping that he will take some of my suggestions about contacting some of these Lyme docs for advice.

Is there anyone out there that has gone downhill as far as Michael has gone and was able to return? I felt last week that Michael was only going to be with us for another week or so -- that's how ill he has been. He can't move any arms/hands and legs (except his left arm a bit) and he's on a respirator -- can't breathe on his own. I don't know at this point what hope we have.

Thanks for being out there -- it's good to know others are fighting this battle!

Last edited by karenjl1; 06-18-2007 at 07:22 AM.

 
Old 06-18-2007, 11:51 AM   #30
Senior Veteran
(female)
 
Join Date: Jan 2002
Posts: 5,818
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Ohio Hunter Too Healthy For Hospice

Hi Karen. I am sorry your husband is so sick. It is good he has been started on treatment. It is amazing that you can see improvement already! Maybe one of the Lyme doctors could consult with the doctor who is treating him? He really needs to be tested for the co-infections. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective.

There is no way to know for sure, but I think it is possible he was infected in CT. Many people who have Lyme are able to keep the infection at bay for some time until the immune system becomes additionally stressed (illness, accident, divorce, etc.). Then symptoms emerge.

Lyme disease affects people differently and yes, it can be very serious.

Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

If possible, it is a good idea to document your husband's symptoms daily. One easy way to do this is to list the three main symptoms he has each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when his herxes occur and how he is responding to the meds.

I hope he continues to improve.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Hospice wants me to stop feeding my dad daddiesprincess Hospice 47 04-20-2010 02:03 PM
Ohio Hunter back from Kansas ohio hunter Lyme Disease 15 10-29-2006 06:12 AM
Hospice gnik Hospice 9 05-20-2006 08:15 AM
Hunter Ryan has arrived talsept Pregnancy 5 03-27-2006 06:19 PM
Ohio Hunter, how are you? deejavu Lyme Disease 9 11-21-2005 10:40 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



ninamarc (1), wynnsldy (1), ladybud (1)

Site Wide Totals

teteri66 (1139), MSJayhawk (942), Apollo123 (859), janewhite1 (823), Titchou (773), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 03:49 AM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!