i guess we could ask you the same question. i find looking at time frames is only depressing. one day at a time... which is how we should always live.
Keep your chin held high..i just try to think of the future... i also think of WWII veterans having to battle for 4 years in brutal conditions. in some ways this is our own personal WWII...it may own your body but never let it own your spirit.
I have to ask ..have you made any progress in 2 years?
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Dave,
No haven't made progress at all, just getting worse.
My chin is always kept up, but when I see the months, years passing... it makes me wonder.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
He is saying it is going to be a LONG journey....
Since the Lyme and TBD's have damaged my Pituitary Gland and caused the Addisons Disease he is pretty much shocked.
He has me on high doses of Mino,Zithro,Bactrim,Malarone and Tindamax....
I see him in 2 weeks......
I have asked him what the outcome would be and he dropped my records on his desk and said " 7/10 bands from Quest, Moderate-Severe SPECT scan, and a postive spinal?"
Basically he was saying I have a lot against me and it will take a long time to get better.
I am staying positive, but wondering what people have done that are in my situation....
Thanks Dave!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hey Roy,
Things that I do to stay positive:
1. Remind myself that I am still able to walk, talk, move.
2. Tell myself that there are others who are worse off than I am and yet their spirits are so alive. . That's it. I'm not much better after almost 2 years of this either (18 years undx'ed). We are human, there are many days that I am mad, sad, and desperate....I run out of steam. Being positive is hard work....sometimes I just have to rest and RANT.....Rant....Rant. it feels good.
best, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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I've been reading this and not jumping in since I've only just discovered I have Lyme.
I got it when I was 18 (I think) and I'm 20 now.
It was fairly mild until 4 months ago, when it all went haywire.
I had a pretty negative Western Blot, but I see a Lyme-literate naturopath who clinically diagnosed me.
I don't see an LLMD until August 6th, and right now things aren't going so great. But I've only had this for two years, so I'm better off than a lot of other people.
I also think I'm lucky I got it long- my body as more energy to fight it off.
I hope your start to see success with your treatment!
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Some of the things that have help me deal with it are as follows:
I try to remember I have been worse and be grateful for the treatment I am getting and for the love and support of my family. I apprecaite the people who have stuck around through years of my disabily from tbds.
Everyday I hope tommorrow will be better. I get through today by fighting for the promise of a better tommorrow - whenever it comes.
I try to preserve pieces of my identity in whatever way I can at the time. while tbds have greatly contributed to who I grew up to be I always see myself as me with a disease... not me as the disease.
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks for all the replies....
I hear it all the time that its better that I am young and dealing with this than if I was older...
I have to argue that. This disease and coinfections have put myself and my family through so much.
The anxiety and sickness that I feel almost everday keep me housebound.
I am young, want to take my wife and son away on vacations, but can't.
I just have to take it one day at a time... I hope one day I wake up and it all goes away.
Don't we all????
When the newspaper came and did an article on myself and my family it really opened my eyes about how far I have come (mentally) in the past 2 years...
I'll post the article again, don't know if you all saw it....
posted
Same as You, I do it for my children. Sending you hopeful thoughts.
Posts: 261 | From Piedmont | Registered: May 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Kreynolds, has your LLMD considered IV treatment as this point since your lack of progress?
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Dawn in VA,
I have had 2 PICC lines in and currently have a port.
I just stopped IV about a month ago, was on it for a year.
I am on orals now.
I have been on IV Doxy,Clindamycin,Invanz,Tygacil,Zithromax,Levaquin,Rocephin,Penicillin and Vancomycin..LOL
Yeah, I have been on it all....
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Roy,
I also got sick at age 22, a month after my birthday. I had recently graduated, got my license, landed my dream job, etc. Life was good. It all ended when I fell ill.
I was sick for 4yrs before being diagnosed with Lyme and Co's. During that time, I literally lost everything. I even stopped dreaming.
Thank God I found my LLMD. He was literally my last hope. With God's provision and his guidance, i've finally begun to turn the corner. It's been slow but there is progress and there is hope.
I've learned that I cannot dwell in the past, on the things that i've lost, opportunities missed. I cannot compare myself to others. These things are depressing. They hold me back and keep me from enjoying the life that I have. I cannot change the past but I can enjoy the moment that I have and look to the future.
I've also learned that I cannot rely on my own strength. I do believe in God and i've found that keeping my eyes on Him and not on me makes life much more enjoyable. I would not be here now if not by the grace of God. He has provided for me in ways that I could never imagine and I am so grateful.
I also don't know where i'd be without all the kind folks here on Lymenet. Thank you for all the words of wisdom and encouragement that you share on a daily basis. I greatly appreciate you!
Posts: 5237 | From here | Registered: Nov 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Did you see the Monsters inside us episode tonite.
The doc used antibiotics and a antiparasiic called
Atobaquan for babesiosis. They were specific about
that. I wonder if it would help all of us. They
also specifically stated that if it was not in the
sample it may be missed in the testing. As it is
not in all cells. Interesting.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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in my SUPPORT FORUM .... lyme video collection
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beths
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Member # 18864
posted
Hang in there..I have been on treatment for 3 years..I didn't notice much difference until 18 months in. After the 2 year mark, I went back to work part time. Now, I'm doing pretty good-except for my stomach. But I exercise, work and play.
I never thought I would see the light at the end. My kids kept me going.
Posts: 1276 | From maryland | Registered: Jan 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks for all the replies!
Yes things COULD be worse, but it is so tough when you are young....
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
I think we all have the right to get down, just try not to get stuck there, it's challenging sometimes. Yes, we can all look around and find someone who is worse off, though again, we all have the right to feel - it sucks; it's a cruel disease.
I'm 47. Sick at 43, diagnosed at 45. I don't think there is ANY time, young or old, that this disease is not hell. I am trying to raise 3 kids - teenagers; it can be so incredibly difficult when you're healthy, let alone flat out with Lyme and company. At no time (or age) do I see this disease as easy, convenient and not major life-impacting. It can be hell on earth at times, no matter the age. We just have to keep fighting.
You know age is a funny thing, when I was in my 20's....I probably thought mid 40's was "older," then you get there and somehow that perspective really changes...I hope you see progress soon. TS
Posts: 566 | From West Coast | Registered: May 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm sorry that you are so sick and haven't seen much improvement. It is a VERY good sign that you have so many postive bands on your WB. Means your immune system is fighting hard on your behalf. The sickest patients often have negative tests because their immune systems are not fighting and thus not producing antibodies. Yours is. That is very hopeful!!!
Keep your immune system as strong as possible and keep peeling back the layers. I won't go into detail because I know you've read about many of them here at lymenet(genetic issues, co-infections, heavy metals, detox etc. etc...).
I understand how very hard it is to be so sick at such a young age. I was as sick as a dog when I was your age but didn't know what was wrong. Many decades have been wasted feeling very sick and not knowing what was wrong.
Like others, I try to manage the disappointments by appreciating all the wonderful things in my life.
There are so many things that I want to do but can't. I may never be able to do the things that I planned to do when I was younger. That is not unique to people who are diverted due to illness.
What I try to do is look for ways to find meaning in my life. Find activities and hobbies that I can become absorbed in and that give me satisfaction and pleasure. Keep using my brain. Find things that help me feel like I contribute something to the quality of life for others.
Ideally, I want the world to be a better place because I was here. Short of that, I'll be happy if I can make life a little better for a few other people.
Bottom line - Live now rather than planning on doing all of your living when you are better. Find things that you enjoy doing and find things that make you feel like you are worthwhile.
Hang in there and make the best of what you have.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks for all the replies! I am just waiting to see the light at the end of the tunnel, but it's taking a LONG time!
Lots of "trial and error" and not much result.
The Mino really seems to be hitting me the hardest all around.
MORE than the IV's.....
We will see what happens, right?
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
One other positive for most all of us here. We actually (finally) know what we're fighting. Not true for so many others, many of which are infected with TBD's...TS
Posts: 566 | From West Coast | Registered: May 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
tickssuck,
yes you have a point there, but I have met many people in denial about the fact that they have Lyme.
I have met people who believe that they have MS and such with POSITIVE LYME tests, but won't pursue the option....
I try to get them help, but they seem like they don't want to be bothered.
like the saying, you can bring the horse to the water,but you cant make the horse drink, right?
Thanks for your reply!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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quote:Originally posted by Kreynolds: I have met many people in denial about the fact that they have Lyme.
I have met people who believe that they have MS and such with POSITIVE LYME tests, but won't pursue the option....
I try to get them help, but they seem like they don't want to be bothered.
like the saying, you can bring the horse to the water,but you cant make the horse drink, right?
Thanks for your reply!
I was involved in a group (neurological) before my wife's Lyme diagnosis and the entire group were offended when I mentioned that they should at least look into Lyme possibility. Not until later I realized some have confused Lyme to syphilis, which still many considered it as an immoral "sexual" disease. Oh well...
Now Roy, since you have Lyme and your 3 year old has it too, how about your wife? (don't answer if you don't feel like it)
Posts: 822 | From midwest | Registered: Apr 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I believe that I passed it to my wife and then it was passed to my son....
My wife shows symptoms, but has a negative blood test...
OF COURSE we will never know....
My belief is if it can be found in semen and can be passed from mother to child, why can't it be passed from man to woman to child?
It's a sore subject and I am sure many will argue, but I beleive anything is possible with this disease.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Hang in there, buddy. I am proud that you keep your chin up...That gives all of us hope and inspiration.
Posts: 822 | From midwest | Registered: Apr 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks wtl
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
Yeah Roy, I hear you. I have a cousin who has been labeled with the typical fibro, CFS etc for YEARS. She has battled various health issues over the years.
In conversation with her mom about Lyme, once my dad and I figured out our problem was Lyme, her mom mentioned my cousin had a tick bite and a bullseye back in her teens! Of course, I got on my LD soapbox, bullseye being diagnostic etc, etc. I don't think, at this point, they've investigated it any further...like you said, you can't make 'em drink. Crazy.
Hope you see some progress soon Roy. Take care. TS
Posts: 566 | From West Coast | Registered: May 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
TS,
Yes,
I know many people like that, including family members...
At times I begged them to just get tested and they laughed it off...
I just know that I wouldn't want anyone to get as bad as I am or worse....
When I first was sick I didn't have the knowledge or respect for the disease that I do now.
I think that most people that find out they have Lyme at first are skeptical, I was....
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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bettyg
Unregistered
posted
roy,
by all means i did NOT mean to minimize what you are going thru my dear adopted son!!
for me, it always helps me to see or know of those worse than me, and i thank god daily for the shape i am in now.
i was 21 when i got so sick, but 34.5 yrs. went by until i ws correctely dx after 40-50 drs. misdiagnosed me.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Of course it is awful to be sick when you are young; and I am so sorry that you have to deal with this; but the truth is there is no age that makes it any better to be chronically ill.
My children are just grown and out of the house. My husband and I finally are at that place where we can travel and play golf and do whatever we want on the spur of the moment. It's the days that you dream of, especially after going through raising teens.
But.....now I am too sick to do these things, and I feel that time is slipping by so fast. We will grow old before you know it and this time will be gone; so there really is no good time to have a horrible debilatating chronic illness.
I am so sorry for all of us. No matter the age; children, teens, young adults, middle age people and seniors. The suffering is the same no matter what age you are. Life is precious at every stage.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
bettyg and sutherngrl,
Thanks for your replies...
I know age doesn't matter with a disease, but
wanted to know how many found out they had it
when they were in there 20's and how
they got to where they are now.
bettyg,
wow you have been dealing with this for a LONG time, huh?
God Bless You!
Thanks again for the replies!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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timaca
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Member # 6911
posted
HI~ Also know that when your immune system takes a hit (from lyme or other pathogen)..that other pathogens (like viruses) can reactivate.
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