posted
I've been here before guys. I'm sick again still whatever. I cant\'t handle this anymore. The doctor I respected so much who first dx me has now turned on me. I've been sick since I became pregnant w/ my second son. Since then I've been dx w/ lyme, ms, fybro.. etc. I had ebstien barr mono. I have hashimoto's hypothyroidism. I keep getting infections. I can't function. I know my husband loves me~but I don't think he really likes me anymore. My two little boys are so stressed out. My youngest 7 keeps getting sick. I currently have mycoplasma pneumonia (walking pneu. caused by bacteria and/or fungi). From what I understand this should resolve on its own and even quicker w/antibiotics. I was on biaxn for over a month. Now I'm on doxy. I AM NOT BETTER. I am in so much pain. The muscles in my legs hurt so bad. The lymph nodes in my neck,armpits,pelvic area are killing me. I'm short of breath. My blood tests came back with a higher mycoplasma antibody than when I first started. I had him do yet another lyme test. He was not happy about this. Only lyme igg, igm was done. Ihad one positiveIgM band 23 Kd. There was also a note of mild polyclonal hypergammaglobulinemia. I don't know where to go anymore. I don't know who to see. I'm seeing a psych. He's very kind. He keeps saying it's lyme and messed up hormones. I don't know what to do anymore. I'm so tired that I can hardly function. I'm in pain. I want to run away but I don't no where to go or what to do. I hate this. I'm sorry I just can't handle this anymore and neither can anyone around me.
Posts: 61 | From Missouri | Registered: Apr 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good afternoon First Free,
I am so very sorry that you are having such a difficult time. It must be so hard to be a wife and mother while dealing with a chronic illness yourself. My heart goes out to you.
I do have a few questions about your treatment so far- have you ONLY done one moth of Biaxin? And how long on Doxy?
Have you been treated for any other co-infections? Your painful lymph nodes are very suspicious for Bartonella...have you discussed this with your doc?
And, has your son been tested or treated? The one that you were pregnant with when you became ill, that is now ill.
So, are you saying that your current doc won't treat for lyme any longer? If so, I am really thinking you may be smart to search for a new doc. Please let us know if you need help there, OK?
Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
It is always darkest before the dawn.
Never forget that.
You CAN get well, but it begins in your mind which is very powerful.
You have to BELIEVE first...then you will see...not the other way around (seeing is believing).
Hang in there.
Posts: 9430 | From Sunshine State | Registered: Mar 2001
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posted
When I was first diagnosed w/ lyme around 2001 or so (can't think straight) I was put on i.v. roecephin for about 2 months. I became better for a while. I could hardly walk. The pain was extreme. I had vrtigo, bell's palsy. The list goes on. The second time I did 2 months - I didn't get much better. The problem is I keep getting all kinds of infections that either land me in the hospital or bed. Actually right now I wish one of the docs WOULD put me in the hospital. I'm not getting any better. And I can't take care of my family. And my family can't take much more of this.
Posts: 61 | From Missouri | Registered: Apr 2005
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posted
Melanie~ My son has not been tested. He has/have chronic ear and sinus infe3ctions. He's had 2 ear tube surgeries. One ear didn't heal. He had to have an incision made behind his ear where they cut out muscle and tissue to use on the inside of his ear to cover the eardrum~so it would heal back together. He's also had hernia surgery. Now (early Nov.) he has to be put under to be examined for voice nodules because he has always been extremely hoarse. Thanks for asking.
Posts: 61 | From Missouri | Registered: Apr 2005
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posted
It's me again. My percocet kicked in. It doesn't help much but I can sit up and type a little bit more. I do need some kind of doctor. I don't think I have active lyme anymore even though one band came back positive. BUT I do believe lyme got me into this mess. I just don't know what to do anymore. I called Dr.C's office and found out he doesn't take insurance. Tried to call the other# to see how much first visit would be and couldn't get through. I would appreciate anyones help. I just can't do this anymore. I just need help.
Posts: 61 | From Missouri | Registered: Apr 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
First free: Oh my, you sound like you are almost at the end of your rope.
You're in alot of pain. Are you taking anything for it? If you don't have a prescription med, you might want to try Excedrin. It is aspirin, tylenol, and caffeine. It helps me as much as the Ultram.
I usually buy a big bottle of the store brand; just check the ingredients list to see that it's the same.
Oh, okay, I just saw that you have Percocet. That has caffeine too, so try not to take it too late in the evening, in case the caffeine keeps you awake.
When my boys were little, and I was sick but didn't know why, I cut the extracurricular activities down as far as I could. I just didn't have the energy. It was far more important to have clean laundry and to get supper on the table.
Are you getting any sleep? How is your mind? Your memory?
I am no expert on antibiotics, but it's possible that if you're feeling worse than usual, that your actually herxing. Sometime people reduce the dosage for a couple days, to give the body time to clear the toxins so that they'll feel better.
posted
So sorry you've had such a rough time, but I'm glad you've come back to LymeNet.
A couple things come to mind, but you're not required to share more info than you want to.
Were you given any oral antibiotics after the rocephen? Some people have said they relapsed after IV Rocephen was stopped.
You may not have been given adequate treatment. With the symptoms you have, 2 months of treatment is not long enough. Most LLMDs treat for at least 4 to 8 weeks AFTER ALL symptoms are gone.
What dose of Biaxin per day? Did you take Biaxin for only 1 month?
What dose of Doxycycline are you taking per day? How long have you been on Doxy?
Have you been treated for co-infections? Testing is not 100% reliable, symptoms are similar to Lyme, but generally speaking, different meds are needed for each co-infection.
You may be aware that antibiotics (abx) kill good bacteria along with the bad bacteria. Have you taken adequate amts of acidophilus to replenish the good bacteria in your system? Acidophilus should be a high quality & you need large amts per day. Some say 6 capsules/day with meals.
You also have to be sure that you have 2 hours between abx & acidoph or it won't be able to help.
An updated version is at www.ilads.org I think it's under Articles & Presentations. I haven't had a chance to read it so I don't know what's been added.
Have to for now but will check back later.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Dear First Free - I am ashamed to say that I almost passed up answering your post and I couldn't figure out why. Now I know .... you remind me of me. There have been so many times that I have just wanted to throw in the towel because it just wasn't worth it anymore.
But then I came out here and posted and everyone was here to help me ..... thank God!!! All I had to do was think of my sons and even though they are in their twenties and have lives of their own, they still need their mama once in a while. And now I'm about to be a first-time grandmother and I would have missed all of this if I had 'check out' when I was feeling so down.
What I try to do .... and this is kinda hard when you're feeling so crappy .... is to think of one good thing that happened today. For example, today I had the runs most of the day which really pissed me off because their was no reason for it (except for the lyme cooties partying without any meds) but I was able to crochet seven rows on a blanket I'm making for my grandson-to-be.
Just try to change your mindset a little bit. You had an extremely bad day, but your pain pill worked .... that's a good thing. My percocet didn't work last night, but the good part is I was able to catch up on my bills and my emails.
It could be something as simple as finding a beautiful red leaf in your driveway. Life is way too short as it is and I know our lives suck because of this disease and all the other diseases that accompany it. I too have practically begged my doctor to put me in the hospital.
I don't know if you are religious or not, but God never gives us more than we can handle. And lots of times I still wonder why he gave me and you so much to handle.
Email me if you just want to talk, OK? And take very good care of YOU!
-------------------- Life isn't about how to survive the storm, but how to dance in the rain. Posts: 830 | From Endicott, NY | Registered: Aug 2001
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
first free,
My children are 8 and 4 and both have lyme as does my husband and me.
Get a sleep test--the cPAP machine really helped me. Take two tylonol before you go to bed so that you get some rest from the pain you are in. Takevaltrex--you may have epstein-barr (mono). See if that helps.
Go to sleep when your kids do. Get up with htem.
Remember, perfectly clean houses only exhist on "Desperate Houewives." give up t.v. Don't take on anything new.
Get your children and your husband tested.
If you pay for just one visit with a LLMD then maybe you can do a lot of work over the phone.
I contacted Dr. J and had my children's blood test sent to him--we didn't have to make a trip to CN. Your sons symptoms sound just like my older boys.
Find an opened minded doctor who would work with a llmd. Maybe someone here can help find a GP in your area.
Just remember you are not alone. Last Christmsa I was in your exact same shoes, and the panic and fear that stalked me was horrible. You have to arm yourself with knowledge. And this is a great crew to help.
God bless, Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
Hey guys~ thanks for the hand up. Here's the deal back in 2000 I was dx w/ lyme. I look brand new to the board if yu look when registered. But I was hooked up here back then-forgot my info when I didn't log on for a couple of months. So I would just hang out w/ you guys and read posts and pray.
I havn't been treated for lyme since 2000. Twice I was treated w/ i.v. roecephin for 2 months then oral.
Along the way I have had many other serious health issues like most of you guys. But this time the doctor won't listen.
This current infection will not go away. If I was brave enough I would cut my own lymph node out from under my arm and mail it some where.
I don't know where to go or who to see anymore. With my bloodwork I could see an endocrine, infect. disease, and/or viral immuology.
Posts: 61 | From Missouri | Registered: Apr 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good morning,
Well, you are in MO, so doc C would be the logical choice. I'm sure Tootsie-pop is helping with that, right? Insurance issues are a problem for all of us...but from what I understand; doc C is very compassionate and willing to help.
You may need to take out a loan to get started with treatment...it can always be repaid later. But, your and your family's health is the priority at the moment.
It really does sound as if you have been under treated a few times...and your LD has spiraled out of control leading to other problems.
If you have had this for 5+ years...you will most likely need long term ABX. Getting to a qualified LLMD is your first step. And including your son in the apt. would be highly advisable!
My very best, melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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