posted
Hey all, I usually come to Lymenet to ask questions or help others with what I know if I can. So I don't usually come here looking for support, but I truly don't know who else to turn to.
I am starting to really loose hope in ever feeling normal again. Everyday is the same: major fatigue, everything hurts, and I feel like I have the flu now for 1 1/2 years. Not to mention all the other hundred sx that come and go stuff like stabbing pains, headaches, dizziness, and the depressed/zoned out feeling that never goes away. I feel like I am a walking zombie with a shell of a body that has quit working.
I fell like my body is just stuck in this state and will never go back to normal. I have hung in there through 9 months of treatment (abx like doxy, omnicef, zithromax, 3 days of flaygl which gave me severe depression, and tons of others like Questran, difucan nystatin, cortisol, armor thyroid, B12, and lots of supplements...)
I feel like no one understands me anymore... I used to be this fun person that people wanted to be around and now they just think "what is her problem" or " she always has some medical problem" and the truth is I do! They are all starting to question why I am not getting better or why can't I beat this?
I have never felt so alone in something to where no one can help me... Is there anyone out there who has been where I am?
Do folks really get better ever??????
How do you keep your hope alive when you never turn a corner? My Mom and husband say I am better because I am not bedridden now,and I know there are others that are worse than me..to which I feel guilty even complaining the way I am, so I am sorry.
It's just I miss myself, the wife and mother I used to be! How am I suppposed to rid the rest of my family from Lyme when I so discouraged and can't even think clearly?
How do you continue to stay positive when you are always beat down?
I know they say God will not give you more that you can handle , but I am not sure I CAN handle all of this much more...
Will this ever end? Thanks for listening...Laura
Posts: 232 | From MN | Registered: Jul 2007
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I don't have any advice for you, I can only sympathize. I feel the same way, and have felt horrible physically, emotionally, mentally, etc. every day for about the last year. And of course with the off and on stuff, too.
So I feel for you cause I kinda know what you mean. Except I haven't had any treatment yet. I have my first appt with an LLMD the 17th.
I suspect my kids may have congenital Lyme. My youngest at least, so I know I HAVE to get better so I can help them, but I don't see how it's gonna happen.
I'm discouraged and I haven't even started antibiotics! How pathetic is that? LOL I can't imagine how much more discouraging it must be after a year and a half!!
I hear ya on the God doesn't give us more than we can handle. I absolutely believe that, and that has gotten me through many days in the last year, but I'm like you... *I'm* not sure I can handle it.
I hate this. I hate the me that I am these days. I'm hoping and praying that the antibiotics will bring back the old me.
I even posted on my blog last night with these same kind of thoughts. Just wanted to offer you a
Chris (feelin' like Achy-Depressed Smurf today)
Posts: 155 | From Texas | Registered: Oct 2007
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posted
Hi Laura, It seems that the way you are feeling is a normal reaction to getting better. I, about 1 1/2 months ago I hit my breaking point and was ready to just give up.
I kept saying, I just don't understand how going through this is going to help me feel better. Will I ever be the same again? It was hell.
I have felt ill on and off for 29yrs but more on than off. When I started the Lyme protocol I felt as if I was dying and wasting away. I didn't realize that you get worse before you get better.
My husband said to me that I should go and speak with someone because he has never seen me so depressed and emotional but most of all not having any self esteem about myself. As my brother put it I was a shell of a person.
People just have so much understanding towards what we go through. How can we explain to them how this feels, words just can't express what we go through.
My husband and children had to watch me day after day laying on the couch with no energy and barely being a wife and a mother. It was horrible and I hated every minute of it.
So here is the good news and yes, there is good news! I just went to my llmd the other day and had the results of my bloodwork back.
My body is starting to build back up from complete depleation of hormones and my immune system and so much more.
I am able to actually to get off the couch and have a little bit of my life back. I am not as depressed and I actually am starting to look a bit better.
I looked horrible with dark circles and shallow pale skin. I looked sick.
This is a very hard disease to go through because it not only robs your energy it robs ones personality, desires and lust for life.
Hang in there, it will get better.
Posts: 101 | From NJ | Registered: Apr 2008
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posted
I am so sorry you are going through this. I was in the same place last summer. I can report that I did recover, and my husband who has had it twice did also. I'm 100 percent convinced that this is an STD. I'm also convinced that the government knows exactly what is going on with this diseases and suppresses any efforts to aid in the recovery of what has to be millions of people, most of whom are walking around undiagnosed.
Two weeks ago my four year old got a bite. I do not think it was a tick - I never saw a tick on him and if it was, it CERTAINLY was not attached for 24 hours because every night I help him on with his night pants and I would have seen it (it's in the groin area, very visible). Suddenly a few days later here comes a fever and bulls eye rash! Doc took one look and said it was a bullseye and put him on amox. 7 days later he has a reaction and now he's on zithromax. THe little hiccup in between the meds didn't help and now he seems miserable again. I'm thinking switching him to my doctor who is more aggressive with it.
9 year old son, who had this licked last fall is also exhibiting symptoms. Looking back, I remember four weeks ago, he was hot, feverish and tired and then it went away. now his leg hurts. I think he was probably re-bitten as we seem to have loads of ticks now. He's going to the doctor tomorrow.
Anyway, that's neither here nor there, but my reason for posting is that i was talking to friend in church on Sunday who has struggled with Lyme and co-infections for eleven years. Her children were both born with it and have been on antibiotics for years just to suppress their symptoms.
She told me Sunday that she feels she's found the magic lyme drug - Mepron. I don't know anything about it but she claims that she and both the kids were cured in a month and the symptoms never came back, using a combination of this and zithromax.
She had to convince the doctor, who was willing because nothing else was working. I dont 'know if you've tried this, or if you doctor is open minded enough to give it a shot, but it's a chance at least.
My prayers are with you. I'm so tired of living my life in fear of this disease. I will tell you though, that through our nutritionist and supplements along with antibiotics, my son and I both got better, and we were sick for several months with it.
Posts: 6 | From Northwest NJ | Registered: Sep 2007
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posted
One addition - my nutritionist, who went to a seminar a couple of months ago, came back convinced that Lyme and a parasite go hand in hand. He says he'e detecting this parasite in all of his lyme patients. It makes sense, since it would explain why it recurrs, as the parasite dies off and cycles, etc. In fact, I'm thinking it makes perfect sense that my nine year old experienced a lyme recurrance a month ago - that was the same time that the nutritionist had come back from his seminar and tested my son for, and attacked my son's parasite for the first time. The next time we went back, the parasite was gone due to the supplements, but that's when his symptoms started up again. Perhaps the die off re-released the bacteria into his body.
If you read the reports about the research, etc., done on Plum Island, the one thing that was reported were small parasitic larvae found in the dissection of the ticks who had the lyme.
If you can find some kind of alternative medicine doctor who does Nutrition Response Muscle Testing, they can address this kind of problem for you. I know it's hard to hang in there and keep trying different things. I remember many times just sitting and crying because I didnt' know where to turn next.
Posts: 6 | From Northwest NJ | Registered: Sep 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hope is sometimes all we have.
I am sending hope your way.
We all go through the dumps. Trust me.
I've been there more times in the last 21 months of treatment than I was after Hurricane Katrina.
It's okay to have bad days. That is what we are here for.
For whatever reason, this is my wild roller coaster ride.
One that I wouldn't have wanted to take for sure.
However, my children, husband, neighbors, etc.
Would never have gotten diagnosed if not for my ride.
So.....count the little things.
A good hour. A good morning. A good day (when you get one).
For me the major turning point was losing the brain fog.
I could hear my children telling me they loved me, but I felt like it was a dream.
Being able to really appreciate that is the best thing treatment has done for me.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Calam... A tick doesn't have to be attached for more than a minute to possibly transmit disease.
Mepron is for babesia. Many who have lyme also have babesia. It requires different meds than Lyme meds. You cannot beat Lyme without tackling all the coinfections, such as babesia.
I'm so glad it worked for your friend!! Many have to take many many rounds of it to kill out the babs. You were a lucky one!!
I hope your children get over this dreaded disease very soon!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Thank you to everyone and your replies! It is so meaningful to have poeple understand what I am actually going through. It makes me feel like I am not alone in this- which is huge!
Though I hate everything about this nightmare, when my little girl comes home today and just giggles about her day at school, it makes me want to get back in "the fight" and get better for her! I am tired of feeling like I am missing life and not completely there for her....I have got to stop thinking I don't want to be here anymore,'cause that's not me speaking but the disease!
Thank you for sharing your stories, it helps me to realize others have been as bad as me and they did have light at the end..
I do think I have babs and possibly bart, too. My white blood cell count keeps coming back low and has dropped again, so Dr. C wants me off alot of meds now including abx. So I guess I can't start clinda/quin. just yet.
Lymetoo- would you begin with bart or babs treatment first? Just curious...And did you ever do abx while rifing? Feeling confused on that one?
Thanks again to all!I am going to bed now, with a fresh start tomorrow! Laura
Posts: 232 | From MN | Registered: Jul 2007
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posted
Hi Laura, I am so sorry for how you are feeling. I wanted to share a little of what I have been through this past year. I can't offer much advice because I am in the same position.
I became very ill in my pregnancy with my daughter, who is now 15 months. I have been ill since the day I gave birth to her, and severly. I have been completely bedridden for 10 of those months needing assistance with everything. My son also has lyme disease and it kills to know I cannot take care of him or that I havent enjoyed one day of my daughters first year of life.
I go into despair daily, I am scared everyday I will not be here for my children.
While all my mommy friends are going out and taking thier babies to the park and having family outings, I am in bed struggling to go on another day.....looking for any speck of hope.
I have to sit back and watch all life move on without me. My fiance having to do everything because I CAN'T.... I feel like a burden all the time.
So, I know how you are feeling, I know the desperation and I know sometimes you wish it would all just end.....I feel for you...
I used to be the life of the party, people liked being around me, I had tons of friends. I was fit, went to the gym 5 days a week... Performed in musical theatre. I am not even a glimmer of that person anymore.... I have lost most of my friends, I have gained a ,lot of weight..... I have lost my ability to be a productive mom, that is what hurts me the most.
I have watched my baby grow and learn from my bed.....I have to watch my son suffer with lyme and cant do anything about it.
This is a horrible disease... I guess all we can do is hope even when we feel there is none left in the world.
I hope you have a better day today... You are not alone even though it feels like you are.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Laura, sorry... I didn't see your reply till now.
As for which one, I would go by your symptoms. Do you have symptoms of either?
I never rifed while on abx for Lyme. I have rifed for my sinus infection. It's amazing!! I had gotten lazy about rifing to keep the infection down.
Last night I ran it 30 min for the bacteria still in my sinuses (in a limited amounts.) I could tell when I did my sinus rinse this morning that I had killed off more bacteria!
Amazing!
I bought my rife machine one yr after getting off abx for lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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I am starting to really loose hope in ever feeling normal again. Everyday is the same: major fatigue, everything hurts, and I feel like I have the flu now for 1 1/2 years. ![[confused]](graemlins/confused.gif)
am? 
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