posted
What do you people do to fight the idea that things may never change and there isn't much worth in an existence of never ending suffering some people call living with lyme?
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi bwillis,
These awful feelings are part of treatment, but they pass! Hang in there. We all go through them. And then we do get better!
Please recognize that you might be herxing, which can cause a worsening of depression. I read that you just increased your doxy dose to 400mg yesterday; that will do it!
If it gets too bad, please call your doctor and think about cutting back for a day. Lyme treatment is a matter (for me at least) of no pain, no gain. So, while you are killing the bugs, you need to take care that you do not feel too badly.
People do get better -- I did. I won't say it is easy. But it takes alot of patience, faith, and if you are really sick like I was, long-term treatment. Read alot of the success stories, that helps to fight the idea that things might never change. They will.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Please Please know this IS part of treatment only and you WILL come through it. It comes and goes and is HORRIFIC.
You must ensure you call your doctor or a friend and keep telling yourself over and over this is what you feel now, it is transient it will pass.
You sometimes need to go with the felling of depression until it passes but you MUST also verbalise how you feel and not be alone at times like this.
Call you doctor a support line or anyone and keep coming back here for support even if you have to post a 100000 times as you need support right now
Hugs Rianna
Posts: 1172 | From UK | Registered: Jan 2007
| IP: Logged |
posted
Hi bwillis You have in front of you a wall. Depression and pain - and the people around you don't understand what you are going through.
We do.
We have climbed this wall time and time again.
It is a horrible disease - but you must find the strength and the (pleasure) WILL; to kill off the disease and get on with a normal, healthy life.
This desire to get well again will get you through the tough times.
Just think of all of the thousands of people doing the "Lyme Walk" from one doctor to another, one diagnosis to another, and yet they have Lyme untreated.
You are one of the "Lucky" ones! You KNOW what is wrong and are in treatment.
Now you must get educated and read and study the disease and treatment guidelines and learn to help yourself!
This is an oppotunity to get well!
And yes...a life changing experience. Carry on - for yourself - for your family - for us!
You entered into our family when you started posting here. We will help however we can.
Hang in there - it will get better. You will eventually get a "glimpse" of wellness, this will help you to get through still more treatment and bad days.
My bad days - mean bacteria die-off (herx) so I have mixed feelings. I'm depressed, in pain - but a part of me is cheering for more.
Hang in there! Very best wishes to you, -peedie
Posts: 641 | From So. CA | Registered: May 2008
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
B, my daughter agrees with you. She has attempted 18 times now. The last attempt was in May after her fiance dumped her.
However until then she had been safe for over 2 years.
She COULD NOT SEE that some were getting better and in remission, if not cured. She just had no hope after years of treatment and didn't care about her family or friends, pets, etc.
God has intervened many times or she would not be here...But slowly, the meds have put much of the depression behind her. She still has some psych issues and even brain damage from the bugs and an accident but she is now on the other side.
Someday you will also be on the better side of this junk..And you will have a life and family and friends. And you may realize that there is a different plan out there.
Go slower with the abx and perhaps get something to help you thru this. You can get beyond this. It is a ***** doing so, but you can..
Suicide is permanent. Lyme will be temporary. You may have to adjust your goals and schedules and rethink your life but you will have one.
Just try to find someone to help you thru this. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
posted
Talk to your doctors. It's a balancing act between killing bugs and creating too much herx. Herx needs to be bearable.
Suicide can be a logical solution. But it's not logical when it's being caused by lyme, herxing, because those are temporary, like everyone here says.
Do your best to find doctors to help you treat everything that causes the suicidal feelings -- pain, being ill, neuropsych depression caused by lyme. Treat your symptoms, and side effects from the treatment, as aggressively as you treat the lyme.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
posted
I try to see it but I can't right now. Those of you who are better probably had a LLMD. Unless one miraculously moves into my state, I'll never see one. My children need a Dad, my wife a partner and my students need their teacher back. It all seems too far away to achieve.
Posts: 199 | From utah | Registered: Jan 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You may not be able to get to an LLMD but the books below can help.
Maybe someone in your local support group has the name of doctor who may take insurance - or who may be learning about lyme, etc. Be sure to ask.
the group also may be able to loan out copies of these.
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
posted
Being is more important than doing. Sometimes this is easier to see from the other side .... for example, let's say your grandmother is ill and doesn't get around well .... you would still think she has tremendous value as a person even though she's not "productive".
It's our society that makes us think we are useless if we are not productive. It's simply not true. Plus, it just might change. I have had lyme over 35 years and I am mostly better now.
Hang in there. Please talk to your doctor about these feelings, also your loved ones. It's important.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
You have gotten some good advice from people who have been there and made it thru to the other side.
When you look ahead and see years of the same awful thing, it may look impossible and you think "I can't do that." But the way to overcome these feelings is to realize that you only have to survive today. That is the only day you have any control over. Make it thru today.
Then decide tomorrow what to do, hopefully concluding you can do one more day. After a string of these days, weeks and months will pass, and you will be alive and doing better, we all hope. Treatment does help most people become functional again.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
Thank you for responding. I'm alone in the house today. I'm still waiting for IGENEX tests to come back and it seems as if I'm doing nothing to fight the disease. My doctor will do nothing until he sees those results, I hope they say what I feel inside. If not it could be bad for me. Enough crying. Hope I'll be back
Posts: 199 | From utah | Registered: Jan 2009
| IP: Logged |
posted
Someone is always here, even if you're alone at home. Treatment is not a race, so waiting for your results is fine, that in itself is progress! You're another day closer!
Remember, Lyme is a clinical diagnosis supported by testing. If you have the symptoms and get a negative test, see if your doctor will give you an abx challenge to see how you respond to treatment. If he won't, I'd find another doctor who will.
Take care, you are making progress just because you had the testing done. There are people here who care, come here when you need us.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
bettyg
Unregistered
posted
bw,
yes, there is someone on the board 23.5/7 .. perhaps 30-60 minutes tops that SOMEONE isn't on here! so come here and talk! WE ARE YOUR SUPPORT GROUP; we are walking in your shoes and have much experience and tips to share with you!
we all get depressed, but your family can NOT survive well WITHOUT you physically being there especially for all those under 18 !!
your pain would end, but theirs would continue for years, and the ...
WHAT IF i'd done this or that to help him; or we shouldn't have left dad alone today.
life goes on; we pick up the pieces and take that DARN LYME AND MAKE LYMEAID OUT OF IT! ***********************************************
8-7-06 NATIONWIDE SUICIDE HOTLINE 1.800.784.2433 now please! If you are feeling suicidal, please call the SUICIDE HOTLINE.
DISCLAIMER: * The information presented is for informational purposes only. * No information should be considered medical advice. * Any information provided should not be used to take the place of advice from your personal physician or other professional. * Links to other sites are provided for ease of research. * Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.
i did a search on DIRECTORY shown above and there are 25 members who showed they are from UTAH!
check them out; NEWEST MEMBERS ARE AT THE BOTTOM!! NOT all are active now. some have NOT posted and lurk only.
Found 25 matches
� # | Displayed Name | Member Status Posts Occupation Location Interests
AmandaPI (Member # 5587) Member More � Registered: 24-04-2004
� Less 75 advocacy/social services Salt Lake City, Utah USA Animals, music, art, photography
soaringeagle (Member # 6016) Junior Member More � Registered: 02-08-2004 � Less 1 Artist Beryl, Utah, USA many and varied...lots of reading/outdoors/horses/rockhounding/swimming/travel...etc.
Bandit (Member # 6820) Junior Member More � Registered: 22-01-2005 � Less 0 Utah
Darius74 (Member # 6994) Junior Member More � Registered: 06-03-2005 � Less 8 Utah
cecy (Member # 8215) Member More � Registered: 02-11-2005 � Less 33 homemaker, writer, editor, historian, researcher, composer/arr. (snail-paced) Salt Lake City, Utah, USA Family, Books/Music, Maintaining a sense of moving forward, living & loving life
Tiff (Member # 8316) Junior Member More � Registered: 19-11-2005 � Less 5 Utah
l41cheetah (Member # 8737) Junior Member More � Registered: 04-02-2006 � Less 0 adult and youth corrections Utah
DL_Utah (Member # 8815) Member More � Registered: 17-02-2006 � Less 21 Mother Utah Getting Well
charmaine (Member # 9122) Junior Member More � Registered: 19-04-2006 � Less 0 retired Utah oil painting
lymystic (Member # 9824) Junior Member More � Registered: 12-08-2006 � Less 0 Utah
cjossb (Member # 10442) Junior Member More � Registered: 23-10-2006 � Less 4 utah
dennisp (Member # 11541) Junior Member More � Registered: 04-04-2007 � Less 1 utah
Triza (Member # 11674) Junior Member More � Registered: 23-04-2007 � Less 0 author/artist Utah nature, painting,writing,reading,spirituality,dream analysis
BayleesDad (Member # 12442) Junior Member More � Registered: 09-07-2007 � Less 7 Copywriter Salt Lake City, Utah writing, reading, being a daddy, magic
audsie81 (Member # 13645) Junior Member More � Registered: 25-10-2007 � Less 5 Utah
angie_7377 (Member # 14377) Junior Member More � Registered: 15-01-2008 � Less 0 slc, utah
newstew (Member # 14383) Junior Member More � Registered: 16-01-2008 � Less 0 Utah
Patti C. (Member # 14516) Member More � Registered: 29-01-2008 � Less 23 Utah
theseachcontinues (Member # 14519) Junior Member More � Registered: 29-01-2008 � Less 3 Utah
yellowutah (Member # 14634) Junior Member More � Registered: 12-02-2008 � Less 3 UTAH
stacky (Member # 14639) Junior Member More � Registered: 12-02-2008 � Less 0 clinical systems specialist (med lab) Utah
lorenzfam (Member # 14938) Member More � Registered: 14-03-2008 � Less 33 Utah
keith5620 (Member # 15069) Junior Member More � Registered: 28-03-2008 � Less 0 retired utah
Stormie (Member # 15981) Junior Member More � Registered: 21-06-2008 � Less 1 Utah
tatertot (Member # 16249) Junior Member More � Registered: 08-07-2008 � Less 0 School Counselor Utah hiking, soccer, family
posted
bettyg is right - this is one time when you need people around you who understand what you are really dealing with!
Check out the people from Utah she mentions. I am so sorry Utah is so out of touch with Lyme.
Read and copy Dr. Burrascanno's Lyme guidelines -see "newbies link" here. Give a copy to your doctor because he/she probably didn't get training for this.
IF your docotor can not grasp the responsibility to treat you. You may need to visit another state. It will be an out of pocket expense.
Most LLMDs only need to see you once a month,or every 6 weeks - as long as you have no complications.
You may qualify for a flight pass from a airline - someone on this board has this information. Or - I will research this for you - let me know if you need me to do that.
Unfortunately, here in Orange County, So. CA - we are also out of touch with Lyme. However, there is ONE doctor close by, (only 20 minutes)and another, 3 which are 1 1/2- 2 hours away.
If there is no other way for you to get proper treatment - message me. At least I can provide a bed for you overnite so you can get treatment in So. CA.
You WILL feel better. You will witness an important family event - or even an especially brilliant sunset - and remember, and think, "I'm glad I was strong and decided to stay here".
I promise you that! Yes, your wife and children need you! -p
Posts: 641 | From So. CA | Registered: May 2008
| IP: Logged |
posted
Flight passes are for people needing chemo or something like that. Lyme doesn't even show up on their radar. I've been in contact with forum members from Utah, they all encourage me to hang in there, but most have enough cash to go out of state for treatment. My only hope is that I can get what I need for healing from my local doctor and my own research and luck. That is what I mean when I say maybe I'll get better or maybe not. Anyway today is just about over, maybe tomorrow will bring something.
Posts: 199 | From utah | Registered: Jan 2009
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am sorry that you are in such a bad place now.
It won't always be that way.
We are always here for you.
I call what you are feeling my "doomsday" feelings.
I believe it is part of the disease process as
Well as our frustrations and pain.
Please hang in there.
It does get better. It isn't an easy road.
It is often said here that recovery isn't a sprint,
It is a marathon. One that we are all running with you.
Sending you and your family positive thoughts and prayers.
You are needed and loved.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
B Willis, you've forgotten the most important advantage you have. Your own body.
I had Lyme for 25 years with no help, doctors telling me it was all in my head, it's fibromyalgia, there's nothing we can do.
I fell back on the principal that my body was my ally. God created my body to be self healing given the right resources.
I fed it only nutritious food, and gave it plenty of rest. Natural foods, no sugar. The Lyme went into remission. It takes time to heal, and you can do it!
Your immune system will not let you down, but until you get the medical treatment to assist, it needs all the help it can get. Treat yourself kindly.
You are not alone, there are many to support you here and at home.
You are not powerless. You can help your body to get better by giving it good food and rest. While you are waiting for the tests, and after the test results come back.
Your family needs you to be strong. You're teaching them how to face and overcome adversity. It is a lesson that will help them their whole lives, and you are their best teacher.
Work through the pain. Believe it or not, you can actually learn to ignore it. I have, and I'm here to tell you that its' possible.
Never give up the gift of life, even when it's not easy. Because you never know what wonderful gifts are waiting for you tomorrow. You don't want to miss out on a beautiful future, and your whole family deserves the gift of you for a lifetime!
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Were you talking about donated air fare when you said: " . . .Flight passes are for people needing chemo or something like that. . . ."
If so, there is an agency who will help lyme patients. I've used it. But I happened to go to a doctor who, although taking medicare, did not really believe in long term treatment - even though he firmly believed in chronic lyme. I made a mistake and read only one article about him before going. The article was not totally accurate about his methods.
If you know of an old college friend or a relative in a city with a LLMD - and if you might be able to handle the appointment, PM me and I'll see if that agency can help you get a flight (it will depend upon their load right now but lyme patients are treated equally).
If you are a member of church or civic or social organiziations - see if there may be some connections for lodging or practical support (transportation) available in places where there is a LLMD.
In the meantime, magnesium is one of the best things that can help reduce physical pain, help the liver detox and also gently lift one's mood.
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey BW,
Your posts have brought tears to my eyes, and taken me back in my mind to a time when I felt just as you do now.
You have a tremendous mountain in front of you and I know how you feel. We all do.
I am better now, much better, and with time you will get better too. I can only reiterate what others here have said. Suicide is permanent. Lyme is temporary. Your family and children need you.
There may not be a support group in Utah, but you have a support group of thousands here on Lymenet and we all care about you. We're pulling for you Willis and we'll help you in any way we can.
Hang in there friend. These feelings will pass, I promise. Keep us posted and check in with us frequently okay?
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
lymeloco
Unregistered
posted
It is NEVER a cure! Trust me, please. It won't solve anything. Keep writing here and we will get you through. We know it seems bleak right now, but truly it's not.
I was just at a screening with lots of people who feel the same as you did, and have gotten through it. If you need to keep writing us, please do. We all care about you and don't want to loose a comrad. My son is in Afghanistan and has a new wife and baby, and he's struggling too. Please, this will pass, trust me because I have been there. We All care.
IP: Logged |
lymeloco
Unregistered
posted
bwillis, are you there? If you want to talk, please do.
IP: Logged |
bettyg
Unregistered
posted
outstanding advise everyone; glad we've come together to share our knowledge, personal experiences, etc. thanks gang!
IP: Logged |
posted
BW - I have been in your shoes and had those thoughts too.
I live in New Mexico, went to Florida and got bit. I came home with the bull-eye rash but didn't know what it was.
By the time I figured it out, I was hallucinating and barely knew who I was.
I saw 11 doctors, all who told me that "there is NO Lyme in New Mexico." A doctor put me on 200mg of doxycycline but it wasn't enough; 6 week later, my foot swelled up like a football and I started seeing things again.
I went to the ER and they put me on a 2gram rocephin IV. I started to feel a little bit better but the doctors wanted to stop the treatment after 2 weeks.
A nurse from the east coast at the infusion place I went to told me to stay on the rocephin for 3 months and told me any doctor in the state could continue my Infusion order.
In desperation, I called an old doctor I knew in a town 250 miles away and told him my story and asked him to fax them a prescription to continue the IV. He agreed and I stayed on the IV for 3.5 months. I got a lot better but I was not totally well.
My friend TF on this site told me to get Dr. Singletons book, The Lyme disease solution and it helped me as I was having to manage my own care.
I realized I also had bartonella. After a disastous trip to see a Lyme Quack in Mesa, AZ, at the urging of my distant doctor, I returned and asked him to give me a prescription for 600mg of rifampin and 400mg of doxycycline in combination.
That was three weeks ago and I am feeling soooo much better. I am back to work now; I can fuction again.
Please don't give up, BW! I have walked in your shoes and I know you want a miracle and please believe me; because it happened to me and it will happen for you.
God bless you.
Your friend, Joel
Posts: 54 | From New Mexico | Registered: Nov 2008
| IP: Logged |
posted
When it gets right down to it, you are seeking relief in whatever form. Relief is a feeling and cannot be felt unless you are alive to feel it. Hang in there. It will be worth the wait!
Posts: 35 | From Minneapolis, MN | Registered: Aug 2008
| IP: Logged |
posted
It will be important to get some relief. That is possible to do with treatments. Do you have a doctor who will write a prescription for Lyme-treating med for you?
Also, I got my Lyme-induced depression to go down immediately with a homeopathic remedy called pulsatilla 12x. Just one tablet under the tongue one night, and the next day I was euphoric. And stayed "happy" while I was taking it.
Hang in there. We all need to find out what's going to help us. We don't know until we try something.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You can find homeopathic remedies (such as the pulsatilla 12x that Robin mentioned) at many nutrition stores and and some markets that carry organic foods.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
This brought tears to my eyes....I have SO been there. And sometimes still go there when I realize how hard this treatment is, how it takes so much from you. But there are some great words and insights in these responses.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
If you can't get enough meds, know that the dermatologist my daughter goes to continues to write prescriptions for abx for her acne.( NO insurance company or ILADS ducks question this) It helped us get thru when my daughter was non compliant with lyme meds.
She does have acne but no one, including the patient questioned the acne meds.
I am not a Dr but would think if you had some facial acne or bumps of some sort that you could then go to any dr for meds..Your face should improve in time...lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
For anyone who can't get a doctor to prescribe antibiotics - go to 4 corners pharmacy !!!!
Go to "Infections" - they have every antibiotic under the sun...Amoxi, flagyl, doxy, zith, etc.
Very cheap and you do not need a prescription. Prices listed include tax and shipping.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
This, too, shall pass. You haven't done everything for yourself, yet. You have a very possible answer: Lyme and/or coinfections. Get help and treat them. Do methylcobalamin B12 shots. Take a temporary medical leave from work and take disability until you can return.
There is a way out of this, you know. Most of the people on this board have felt at one time exactly like you. You can be happy and productive again. Go for it.
Good luck.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
Please remeber, your children will never understand that any pain you're going through was stronger than your love and commitment to them.
It's not a solution.
Posts: 797 | From New York | Registered: Feb 2008
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i have been there and still am....
it's more difficult than you can imagine when you have NO support.
know that you are not alone...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
The possibility of overcoming the obstacle does exist, and knowing there is a possibility increases the probability that you'll beat it, if you believe that things you consider "impossible, just take a little longer."
I learned that from a guy who was in a car accident. He lost full use of his body, a quadriplegic. People told him he would never overcome it, that he would remain that way for the remainder of his life.
When he told them he was going to do it they snubbed him and said "Impossible, it won't happen."
So he took on the mantra of "The impossible just takes a little longer" -- you watch, I'll find away.
He did find a way to improve his situation.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
By the way, Mike, I have heard that people who are paraplegic and quadraplegic are getting their nerve functioning restored to them via stem cell injections in New Delhi, India. So never say never...
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
BW - I have been there - all the way there - I mean with a plan, and everything. I had an eight year old son and I was still contemplating this, it was torture to live one more day in my body and I was utterly hopeless. I had written my goodbye letters and everything.
Then I was diagnosed (clinical basis with a lot of + test bands but no true "CDC POSITIVE"), began treatment and had an amazing response to abx. It was a difference in life and death in the space of about 3-4 weeks.
I really don't share this much - too dark, too private - but I need to tell you it is possible to come through this. When I was at my most hopeless, I got an answer and help. So it is possible. Try to hold on for your family if you can't do it for yourself.
I believe it is also true that if you are having a lot of other neurological symptoms, then the deepness of this despair that we feel can also be attributed to the disease process itself, & is not just an appropriate emotional reaction to the situation we find ourselves in!
Please, come here and talk. Or P M someone you feel you have connected with on this site. If I hadn't waited one more day . .one more day . . one more day . . to execute my plan, I would never have discovered my dx, my tx, and regained my life (it's different now, but it's still MY life!).
I am sending power your way.
onthemend
Posts: 314 | From east coast | Registered: Oct 2007
| IP: Logged |
posted
Where is bwillis?? Please check in with us and let us know how you are doing.
I can tell you that I too have been where you are. Prior to figuring out it was lyme I remember being terrified and convinced that I had something terminal. Then I started to feel so horrible that I became terrified that I didn't have something terminal as I couldn't imagine living another day feeling the way I did. I also couldn't take the guilt of not being a wife and mother but instead a drain on my family.
It wasn't until 3 months into antibiotic treatment that I started to turn a corner. I am now working, playing with my kids and lead a relatively normal life. I'm not 100% but I am so thankful that I pushed through and am here today.
Keep fighting...you will get to a better place!!
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
bwillis, not everyone can handle the horrible herxes that come with higher doses of doxy. Maybe 400 mg of doxy is too toxic for you right now.
Maybe your body is not able to detox anything and things are made worse by doing 400mg of doxy on top of it.
Torcher is not going to get you better faster. It doesn't work like that. I PERSONALLY DO NOT believe one must suffer to the utmost in order to make progress with this illness.
My LLMD believed you could do more harm than good. Only you can decide how much your body can handle at one time.
How are detoxing your major organs. I think you are experiencing the toxic brain effects also. Our brains also can be filled with toxic matter, effects of inflammation of the brain, etc?
IT WILL get better, it's just not as fast as we would like. One day at a time bud!!!!!!
I wish you the best. I wouldn't let this SOB illness destroy me. Fight it, at your best pace.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
Thanks for checking, had better days but I'm still here.
Posts: 199 | From utah | Registered: Jan 2009
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm not against suicide but I think that there must be a reason why we are going through all of this.
You are not alone. It's very difficult for many of us. You never know what tomorrow will bring. There are many good alternative practitioners in UT who charge reasonable fees.
You just have to keep trying one step at a time. No one signed up to have this miserable illness.
I try to appreciate the little things - like a bird singing outside my window or a good cup of coffee.
It's not how I imagined my life would be but I don't know if I will feel better tomorrow. Maybe I will ? I've been fighting this for 12 years... It's sucks but I think there must be some reason why I'm alive.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
bt, its herxing. I developed multiple chemical sensitivities and chronic vertigo from it!
If you dont have that then consider yourself lucky.
I have wanted to take my life so many times on this planet, but know from what I believe spiritually I probablly would zap back into another body thats more messed up or worse, find myself back in this life paralyzed or worse!
I dont think that killing yourself is the end. Counsciousness cannot die and energy cannot be destroyed.
I dont believe in the Christian judgemental God but I do believe in Karma and the good and that this world is very very wrong and everyone who has told you that its supposed to be this way or that is full of it!
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
quote:Originally posted by map1131: bwillis, not everyone can handle the horrible herxes that come with higher doses of doxy. Maybe 400 mg of doxy is too toxic for you right now.
..........
Torture is not going to get you better faster. It doesn't work like that. I PERSONALLY DO NOT believe one must suffer to the utmost in order to make progress with this illness.
My LLMD believed you could do more harm than good. Only you can decide how much your body can handle at one time.
Absolutely correct! Keep on keeping on, b!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
by the way doxy now makes me suicidal!!!!!!!
I swear to god, im not just saying that. I tell my LLMD and he says to stick with small doses of biaxin.
Its funny cause at first doxy did nothing. Then it made me herx a little and then I had a week of feeling terrific. Then it all started to go down hill.
I cant take it anymore. It makes me feel worse then death and everything looks like death.
GO DOWN ON THE DOXY!!!!!!!!!!!!!
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
bettyg
Unregistered
posted
willis, glad to see you posting as folks continue to help you during your deepest, darkest days/nights!
IP: Logged |
posted
Just checking in here, bwillis. In one of your posts above, you were saying that your doctor won't do anything until test results come back and that you hope they match what you are feeling.
I want to make sure you know ahead of time that some people with Lyme get positive test results and some don't. I think the percentage is about 70 percent showing positive on an IGeneX test who do really have Lyme.
There are lots of reasons for getting a negative test result when we really are positive, like we haven't made enough antibodies,
or they're all tied up in complexes, or we have a different strain than the test strain, or the bacteria are in our tissues rather than the blood, or they are in cyst form, etc, etc.
That's why the disease is treated clinically, meaning based on your memory of a tick bite or other onset possibility, history of symptoms, plus your response to treatment.
Some people show positive only after getting some treatment.
Just wanted you to be aware of this so if you happen to get a negative test result, to know that if you indeed have Lyme, and it sounds like you do, that you still have every right to be treated for your symptoms.
When you have the right treatments for you, you will improve in time. It's a marathon, not a sprint we're doing here.
But anyone who's made it through or is responding well to treatments will tell you it's worth it, 'cause we get our lives back again. Maybe not like before we were sick, but even so, we can achieve some quality of life again.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Your brain is swelling on the doxy. Thats what I get too.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
posted
Wow my heart goes out to you. It's been a while since I posted I feel your pain being only 26 and sick for 5 years now. I can't say anything has helped I would have been there too if it didn't hurt others so much. I don't want others to blame themselves.
Please feel free to oughtme. I know it's hard but God is with you. Cry out to him. You will be in my thoughts & prayers
Heather
Posts: 74 | From Florida | Registered: May 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Checking in too. Keep going kid.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Thanks to those who told me I could bet better and to stay in there. Especially Lymielauren28, who ever you are. I'm still here, I'm still taking the doxy and I'm still having a difficult time coping. Looking for that "first good day" .
Posts: 199 | From utah | Registered: Jan 2009
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Keep in mind also, if doxycycline never really helps you, you might want to ask your doctor about switching to minocycline or tetracycline.
Your doctor may prefer doxycycline, but if it isn't helping you, I would insist on trying something else. Some people do well on doxy, but I personally feel I wasted time on it.
No sense suffering like that and not seeing relief, in my humble opinion.
Minocycline has been a good drug for many, and it seems like it would be an easy switch. My doctor says the name brand (Minocin) is superior to the generic, so if your doctor is willing to write for the name brand only ("Dispense As Written" or "Do not Substitute"), that may be a good way to go.
If you have a doctor that is willing to listen, please don't be afraid to push him/her to try new things if you are not improving.
You will be in my thoughts.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hey bwillis, I just got this on email. Maybe when you feel really down it will inspire you:
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All-
I bet I speak for Many if not Most people here that we all have thought about ending all the pain-
Personally I have been sick for over 20 years- for about 10 years I would pray that I would just not wake up every morning - and thought about killing myself Many times Every day --
3 years and 30 days ago I made myself a promise that that if in One year I had not made any progress that I was going to end all the pain by hanging myself out in my work shop - I set the date of January 6th -
I set up the rope and got everything ready because there was Many days that I was just to sick to even stand up or walk at all -
I called my parents and told them that at some point I was just going to have to end all of this pain -
Before I got sick I had a IQ of 160 and had started 3 business and always had a couple of thousand dollars in my pocket -
By the time I had Promised myself to endure just One more year of pain I was pennyless and the state was going to take my house away because I owed 3 years of back taxes-
All of my cloths were just rags and the shoes I was wearing I found at a bus stop-
I had lost Everything- my Kids my wife- and everything I had worked very hard to get-
I had to run off All of my friends because I did not want them to see me as I was withering away -
My IQ was about 50 and I would just walk around in circles in my room because I could not remember what I was just going to do-
I would only leave my home about 4 hours a month when I had to go to the store to get a bag of 42 cent pot pies because it was all I could afford to buy and had the mental focus to cook --
Before I got sick I raced Motocross in the 250 Expert class for many years and won a trophy in All but 3 races I ever did because my bike broke down -
At the age of 23 I arm wrestled the worlds champion on TV - I lost but that was the only time I was ever beaten
3 years ago I was so sick I could not even stand up long enough to brush my teeth so I lost 4 of my back teeth- One of which I had to pull my self-
Now 3 years and 30 day later I am up running around -I ride my bicycle 15 miles aday-
I started a new company and am making some money selling something I designed on Ebay-
Im not making big money now but I did it once before so I can do it again--
My IQ most likely will never get back to where it was but thats OK -
I getting ready to shoot a movie that I wrote in my mind threw the years while wrenching around in pain while laying in bed-
I still have a bad day every so often but I am totally pain free and have a perty high energy level-
A few months ago I had to watch my Mom die from cancer -- the doctors had given her Zero chance of getting threw it and she was in Horrible pain-
The night she died I had made up my mind that I was going to give her a lethal dose of morphine because I knew what she was go threw-
She sure did not deserve to be put threw all of this over living a few more days-
Luckily she died before I had to do this- My Mom had a Great life and Truly lived the American Dream --
The dissension to take Your life is up to You-
But let me tell you that with Good treatment- A Positive attitude and some Luck you can get threw this and have Many years of Life Love and Fun to enjoy --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
1Bitten2XShy
Unregistered
posted
So well said Jay....right from the heart
IP: Logged |
posted
jay, thanks for sharing your very painful, almost suicidal story, that i don't think you have ever shared before on this board during the time i've been reading it. so glad you were able to OVERCOME the bottom of the barrel.
oxygen, i just love that video; i've received it over and over! he is so inspirational!!
willis, so glad you keep us posted, and knowing we all care about you; you recent "newbie"!!
IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Metallic - great song, I've always liked it.
Jay - WOW!! What a story! You know you're such an inspiration to all of us here. Thank you for sharing such a personal journey and giving us all hope!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
posted
bwillis, I am praying so hard for you right now, every minute I'm awake, you and everyone else in your predicament. Hopelessness is almost as evil as pain.
Please, make a list of the good things in your life, and then post them where you can see them often. Smile, even if it hurts!
I find I get really depressed when I'm just laying around all day just trying to make it to tomorrow. I've found that if I set a goal at the beginning of each day, accomplish it, and then at the end of the day I feel like I've at least done something. The goal can be as little as getting up and brushing my teeth twice a day, or hugging someone I love.
I also try to find things to look forward to. Looking back, or even looking in the present is sometimes too much to handle. All the doctoring, with conflicting ideas of how to help me, that all gets really hard to handle.
Please close your eyes, relax and breathe deep. Think of every muscle in your body from your toes to your head. Then feel the arms of all of us wrapping around you in a hug of love from the deepest parts of our souls.
God bless you, and all of the people who have lost hope. May you find love from those around you, and doctors that know how to heal you as your angels watch over you all day and all night.
In His care, Jenn
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
quote:Originally posted by groovy2: Hi All-
I bet I speak for Many if not Most people here that we all have thought about ending all the pain-
Personally I have been sick for over 20 years- for about 10 years I would pray that I would just not wake up every morning - and thought about killing myself Many times Every day --
3 years and 30 days ago I made myself a promise that that if in One year I had not made any progress that I was going to end all the pain by hanging myself out in my work shop - I set the date of January 6th -
I set up the rope and got everything ready because there was Many days that I was just to sick to even stand up or walk at all -
I called my parents and told them that at some point I was just going to have to end all of this pain -
Before I got sick I had a IQ of 160 and had started 3 business and always had a couple of thousand dollars in my pocket -
By the time I had Promised myself to endure just One more year of pain I was pennyless and the state was going to take my house away because I owed 3 years of back taxes-
All of my cloths were just rags and the shoes I was wearing I found at a bus stop-
I had lost Everything- my Kids my wife- and everything I had worked very hard to get-
I had to run off All of my friends because I did not want them to see me as I was withering away -
My IQ was about 50 and I would just walk around in circles in my room because I could not remember what I was just going to do-
I would only leave my home about 4 hours a month when I had to go to the store to get a bag of 42 cent pot pies because it was all I could afford to buy and had the mental focus to cook --
Before I got sick I raced Motocross in the 250 Expert class for many years and won a trophy in All but 3 races I ever did because my bike broke down -
At the age of 23 I arm wrestled the worlds champion on TV - I lost but that was the only time I was ever beaten
3 years ago I was so sick I could not even stand up long enough to brush my teeth so I lost 4 of my back teeth- One of which I had to pull my self-
Now 3 years and 30 day later I am up running around -I ride my bicycle 15 miles aday-
I started a new company and am making some money selling something I designed on Ebay-
Im not making big money now but I did it once before so I can do it again--
My IQ most likely will never get back to where it was but thats OK -
I getting ready to shoot a movie that I wrote in my mind threw the years while wrenching around in pain while laying in bed-
I still have a bad day every so often but I am totally pain free and have a perty high energy level-
A few months ago I had to watch my Mom die from cancer -- the doctors had given her Zero chance of getting threw it and she was in Horrible pain-
The night she died I had made up my mind that I was going to give her a lethal dose of morphine because I knew what she was go threw-
She sure did not deserve to be put threw all of this over living a few more days-
Luckily she died before I had to do this- My Mom had a Great life and Truly lived the American Dream --
The dissension to take Your life is up to You-
But let me tell you that with Good treatment- A Positive attitude and some Luck you can get threw this and have Many years of Life Love and Fun to enjoy --Jay-- [/qb]
groovy what a truly positive outcome! Many have gone through this and still I have not regained my strenghth or mental stamina/tolerance.
What helped you improve the most?
[ 02-26-2009, 04:16 PM: Message edited by: lymeHerx001 ]
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I think Jay left this board forever over a post that mistakenly was moved. He never came back!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Is Jay groovy?
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Jay, that was beautiful. If lyme didn't kill you, nothing will!!!
There are many too many survivors of lyme here in this board. You are CERTAINLY ONE.
You have fought beautifully, and you're certainly an inspiration. I hope bwillis won't do the final gesture and read what you wrote.
I think after having fought the medical system, healthcare, lack of money, total lack of health, of friends, of support, and still surviving and now thriving as you are, this is the best lesson of life you could get and give to someone.
There are many like you here in this board, many lyme survivors.
Bwillis, you aren't alone!!! There are alternatives, and ways to get on and having your life back.
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
posted
I remember when my brother was fighting his battle with advanced colon cancer and he was having a bad day, feeling just awful.
When I told him how sad I was that he felt so horrible, he said, "that's okay, I'm sure those cancer cells aren't feeling very good right now, either."
I try to keep this in mind on my (frequent) bad days.
Hang in there, there is ALWAYS hope and you are not alone....
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Is anyone in touch with Jay or bwillis? I was thinking about bwillis & wondered how he was...
Please let us know.
I hope Jay will come back, too...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
bettyg
Unregistered
posted
jay is back; last post was 2 days ago!! yes, he took a little time off here.
I'VE BEEN IN CONTACT W/WILLIS, and gave him some more llmd info for his area that i had OVERLOOKED the first time. he was going to schedule an appt. and very appreciative OF ALL THE COMMENTS ABOVE helping him.
it's extremely hard on his family too, and he feels bad for that as well!!
we helped him OVER HIS HUMP! told him we are here 23/7 ... come anytime and talk to us since we are walking in his shoes!
so yes, we've heard from both of these men! YIPPEE!
IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
bw- word is things are better?
when you are able to, i hope you take a step back and really look and SEE the outpouring of support that came your way here, most of it from those still suffering too.
there are times when that support from people who know what hell you're in makes you decide to live that one more day, and then the next.
the thing about this frigging disease is, and after living with it for almost 7 years i guarantee it, that if and when you can suspend all your entirely reasonable and rational disbelief and yes, shout down your mixed and messed-up Lyme-brain too about what comes next and simply HOLD ON,
a better day will come along, even if it is one just one day for the time being.
that one day feels so gooooooood, you'll wwant and know maybe there is another, then another.
meanwhile. you sure found the right place to be for now...
hugs- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic