posted
I am feeling really anxious and pretty much scared to start treatment.
I was diagnosed with Lyme Disease and Rocky Mountain Spotted Fever at the same time in 1988 when I was 16, but I was only treated for 7 days in the hospital in July '88 and 5 days in August '88 with IV Penicillin.
I did not take any medications after this and experienced many different symptoms that would come and go over the years.
It wasn't until 3 years ago that the symptoms got increasingly worse and continue to worsen.
I have such extreme fatigue, nausea, migratory skin pain, irritability, knee, back and hip pain, and terrible brain fog, which pretty much are a daily occurence.
I have also experienced 1 bad tremor and have days when my heart likes to skip beats.
My Primary care physician over the past few years has said that he thinks I am just really stressed b/c I have two kids and work full time!
He also said before doing blood work, maybe it is MS. At the last visit, he said that he thought I may be depressed, but I told him that if I was at all, it was because I wasn't being treated!
He had put me on Doxycycline for 1 month and said that I was treated!!!
I asked to be referred to a specialist and he said that he would only refer me to an Infectious Disease Specialist.
I went to see him last week and that was a joke-he answered three telephone calls while I was meeting with him, took my blood pressure and then told me he thought it was stress.
I told him the treatment that I had received with the Doxy before and he still prescribed me that and said "I'm giving you one month rx of doxy with one extra month just in case." I couldn't believe it!
I have been really frustrated...then after meeting someone that went through the same thing with the same doc told me about a LLMD that has been wonderful.
I called and made and appt. for July 2 and am feeling very hopeful about the appointment, but scared at the same time.
I worry about the side effects and how I will be able to function with my girls and my job....reading about what some people go through is scary.
This is the first time I have really talked about my experience other than with my family, so sorry about the lengthy message...any suggestions would be greatly welcomed!!!
[ 21. May 2007, 04:26 PM: Message edited by: Morcam ]
Posts: 15 | From St. Michaels, MD | Registered: May 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sounds like you were not treated thoroughly enough back in 1988 when you first were exposed to lyme.
Seven days of antibiotics is not long enough, and one or two months of doxy is not long enough for late stage lyme, and your symptoms are very familiar to many of us who also have late-stage lyme.
Fatigue, brain fog, pain, tremors -- these are the classic symptoms that I had that got worse and also led to my lyme diagnosis and treatment.
The good news is that you can get much better with proper treatment.
I want to suggest -- go back and edit your original post to make it easier for people to read.
It helps to skip a line between each sentence, like I am doing here.
After about 10 months of antibiotics, my energy level is much better, my joint pain is much less, I can breath easier, and my brain fog is reduced. Heart symptoms have pretty much gone away.
It may take some time, but you can improve your health vastly through lyme treatment, if you work with an llmd.
So, do not be too scared to start treatment. There may well be some rough times, and you will need to be very careful with your diet and take the time you need to rest. But the rough times in treatment are worth it due to overall improvement in health.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I hear you there. I have two toddlers....ages 5 and 3 1/2. My pain levels and fatigue are already insane. Not to mention all the other symptoms.
I am going to see Dr. J in PA , and scared to death of treatment. It sounds as though you get much worse before you get better.
I can only hope that he can give meds to cope with some of the horrible side effects.
It's bittersweet isnt' it?
Posts: 151 | From ohio | Registered: May 2007
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posted
Please don't be afraid of treatment. With a good LLMD, alot of your symptoms will improve. I am more afraid of not being in treatment. I wont let this nasty disease win. Stay positive and you will be able to cope with what comes down the pike at you.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
NOT treating is far more dangerous than TREATING. Get after it so you can get your life back!!
It won't be easy, but you can do it!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Cobweb
Unregistered
posted
Holy Crab-another Merrylander with Lyme-Greetings.
I finally got sick(pun intended) of being sent to "specialists" and made an appointment with an LLMD.
A bit frustrating at a time I was very anxious-lengthy first visit-mostly symptom history and discussion and blood draw for Igenex-but i had to wait for my follow up visit to get the results!
I had tested positive two years before at Quest-and treated with a whopping 3 weeks Ceftin-normal dose.
Two years later I still tested positive-and began treatment. I cried with relief -but was also scared about how I would handle treatment. I have two teenage girls -not toddlers.
Fatigue has been a major issue-and provigil has helped a great deal with that. I'm a pro now at treatment(Ha!)and getting videos from the Redbox.
So glad you are going to an LLMD. And welcome to Lymenet. Fear the Turtle!
posted
welcome! i'll send you a private message, PM, with my 56 pages of newbie links, advise, symptoms, igenex blood tests..western blot igm/igg, ssdi disability,
HOW TO PREPARE FOR YOUR 1ST LLMD VISIT!!, and much more helpful info!
You're going to find out ONE treatment does not apply to all; we are all UNIQUE and each need different things and COMBINATION of things. it's trial and error as we try to get into remission.
do NOT go to any more infectious drs., known here as ducks; it's a waste of your precious $$$.
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I can relate!! I just started treatment about a week ago, and I was terrified, since I'd heard how you get worse before you get better, and I really don't know if I will be sick for months, or maybe even years.
I hesitated with my first spoonful of mepron...I was looking at it, thinking I may be willingly putting something in my body that is going to make me even sicker than I already feel! It was a really weird feeling, and once I took the mepron it felt like no turning back!
BUT...I had to look at is this way: Sure, I may get sicker before I get better, but if I DON'T get treatment, it's pretty much guaranteed that I'm going to feel sick for the rest of my life, and possibly get even worse. A couple miserable years is at least bearable because there's hope for relief at the end of that time--where without treatment the rest of my life could be miserable.
Hang in there and know that you have people who care and understand!!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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posted
*** Sure, I may get sicker before I get better, but if I DON'T get treatment, it's pretty much guaranteed that I'm going to feel sick for the rest of my life, and possibly get even worse. A couple miserable years is at least bearable because there's hope for relief at the end of that time--where without treatment the rest of my life could be miserable.***
You got it, Gena!! Welcome!!
Morcam....how's it coming along??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thanks again for everyone's support-it really means a lot.
When I logged in today, it was the best timing to see a couple more encouraging messages b/c this week has been particularly hard with symptoms flaring up and feeling down.
It's so hard to look at my daughter's (6 & 12), who want to play and I am not able on days like today b/c of my stupid symptoms!
I think to myself...I am not supposed to be like this at 35!!!
I think that I am just on a particularly bad week of feeling so wiped out, nauseas, and hurting all over.
I am looking so forward to my appointment-I just wish it wasn't 1 month away.
I DO have days when I am feeling positive about things to come and you guys here have really given me that support.
I think that I am just in the angry phase prior to treatment (does the angry phase ever go away)?
I am so grateful that I found all of you! Posts: 15 | From St. Michaels, MD | Registered: May 2007
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bettyg
Unregistered
posted
morcam,
anger .. eventually when you see some progress and CONTINUED progress, then the anger will start to leave you.
to me, it's always in the sub-conscience but do NOT DWELL on it.
you need all that precious energy to fight your lyme and to be reading as much as possible.
1 month until appt; sounds bad, but it gives you a chance to really the MOST important stuff i sent you about your 1st appt. and learning other basics so it doesn't go over your head.
take someone with you; family/friend so they can write things down and you can listen and ask your own questions.
make sure YOUR QUESTIONS GET ANSWERED 1ST TIME! with my 2nd llmd, she had every miniute of our 3 hr. consultation jammed full of HER stuff, and didn't allow me time to ask the things i wanted! that's really hard to do w/a person like me, but she did!
yes, we understand you; you have now become one of us, the lymies worldwide since we have other countries who post here too!
books ... go to left hand side and read about the lyme books available.
look for the KIDS one for under age 12 i believe. write down name/author and call your public library to see if they have it or can order it for you INTRALIBRARY LOAN.
it would be good to read to your kids in kids user-friendly words. just my thoughts since you mentioned your young kids. a teaching tool...
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I am also 35! Like you, I think that I am too young to feel this way! I met my husband in a gym--he's a chiropractor who's into health, fitness, as I also am...and now I can't even keep up with him or play with the dog in the backyard! I have shortness of breath and dizziness just trying to play ball with the dog!
Staying healthy was so important to me and now I feel that no matter what I do for health it doesn't matter. I have definitely had my angry moments and sometimes I still do. I think it's part of a process, kind of like we're "grieving" our health and the things we want to do and no longer can.
But...the good news is there is hope and people do recover from this...and probably at some point way down the line we will understand why we had to go through this!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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yes...I have Lyme, Babesia and Bartonella...Triple fun, as I'm sure many of you know too well also!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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I see you're a social worker. I am (was) a mental health counselor. I worked with battered women and juvenile sex offenders, but the best job I ever had was doing outreach on the streets, trying to get the homeless into shelters and rehab. It was like being a cop AND a counselor at the same time! It was dangerous and I was getting to where I couldn't work because of the tick illnesses anyway.
Anyway...I learned A LOT from a book I found on Lyme. I may be being paranoid about listing the name of it, I'm not sure I can??? Anyway, I will email you the information. I also have a really good book on Babesia.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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posted
I'm sorry to hear you had such a hard time getting real help.
Honestly, treatment is not so bad. I finally got the positive test back (after 12 years of symptoms and suffering) for lyme only 6 days ago, and started treatment 5 days ago. It's not too bad.
You just need to look at it as a way to get relief. Nothing about it is that bad. And Lymenet is great for support. It is definitely how I got through these first days. I got all the knowledge I needed to feel prepared to take on the task of healing.
I wish you the best of luck with treatment! And hang in there babe! You will do just fine!
I didn't want to get in trouble...Or get anyone else in trouble.
I bet that good Babesia you're talking about is the same one I'm talking about...
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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Started seeing a doctor to get the lead out of my daughters system which uncovered toxic metal in both kids and me.
So I became a patient. so doc looked at all symptoms. disagreed with many diagnosis.
started balancing hormones and neurotransmitters.
He expected me to come back and say I was feelinf better but ddnt say that so he testes me for lyme and now I've been in treatment for a month both IV and Oral and herb support.
Knowing that I'm not crazy has been a real relief. Before I would wake up every morning wondereing how I would feel and function. trying to decide whih specialist to see.
I also am not as hard on myself. before I was afraid it was weakness. But it is sickness. So now I schedule life diferently. and play a ton of board games with kids.
Posts: 10 | From Central Florida | Registered: Jun 2007
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posted
Even though I found out treatment would be costly and long-term I was SO relieved to find out I wasn't crazy!!!
I tried to hide my symptoms from my husband and family because I didn't want to appear weak or like a hypochrondriac. Then it got to where I couldn't hide them anymore!
I wish I had investigated Lyme a long time ago, but hindsight is always 20/20.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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posted
That's what I can't wait for...to get to the LLMD and have a doctor that actually believes me and wants to treat me!
Gena, I too have found that so many times I try to hide how I am feeling in front of my kids and at work.
I told my husband that I feel like I have to be an actress; but it is getting to the point where I feel so bad that I can't hide.
My husband and close friends know me so well that they can just look at me and tell right away how I am feeling.
Luckily, my supervisor is pretty understanding of how I am feeling because her mother has chronic lyme as well.
Posts: 15 | From St. Michaels, MD | Registered: May 2007
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posted
Morcam, I know the "actress" thing too well!
I guess I felt if I complained of my symptoms everyone would think I was a hypochrondriac or I'd be a downer to be around, so I ignored a lot of my symptoms and just pushed through them.
I was always the one everyone came to for compassion and strength, and I have never learned how to ask for help. I'm starting to learn that now (not easy).
Also, my husband is very busy with his work, and he's visible in the community. I guess I didn't want him to have extra stress, or a sick wife.
One week a few months ago I felt like something was pressing on the top of my head. I had bad air hunger all day. I felt like I was leaning to the left when I sat at the computer, I was depressed and I nearly passed out a few times.
I took a shower and just started crying. I knew I couldn't fake it anymore, and I was worried. When my husband came home we had a very serious talk where I explained my "Fibroymalgia" was not getting any better with the right diet, exercise, supplements, or "mind over matter."
It is so liberating to finally know you have something real and to finally see a little path (treatment). I used to say before it was "all woods"--now there's a "little path."
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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My story is much like that of the first poster's (except the initial diagnosis).
I met with an LLMD a month ago and my Igenix tests came back positive.
I meet with him tomorrow to discuss my test results and treatment and I am scared s#%tless.
I don't know why- I couldn't wait to find out the results and was so relieved when we finally figured out what was wrong with me.
But now, the last few days, i have been very angry and scared.
I guess it's that the last 4 years have been horrible and there's a light at the end of the tunnel. And I'm scared????????
Posts: 24 | From Massachusetts | Registered: Apr 2007
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I think there are stages with finding out you have a chronic illness.
I was relieved to finally know I wasn't crazy and to have somewhere to start, but there was also the fear of what if treatment doesn't work??
I still have that fear a little. It's not so much the fear of getting worse before I get better, but what if I just don't get better? I may get my hopes up for nothing, which in a way would be worse than not trying.
I want to have my life back and I want my husband to have the woman he fell in love with back, and what if we all get our hopes up and it doesn't work? This is where my mind goes sometimes.
But, we just may get our lives back, too...People have done it! So we have to take the chance!!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Take no prisoners...march on toward better health...if not for YOU, for your children.
That is the take I had on this disease.....
I would rather die trying to find a way out than not.
WHy? My kids have it also...and if you are female, my bet is that your children have it also.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Not everyone gets worse before they get better. I didn't. After 3 months of treatment I realized I had lost that constant sick feeling. It never came back. I still had other problems that came and went despite treatment, but they gradually got better. I had some setbacks, but that sick feeling left forever after 3 months of penicillin.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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I'm hoping I'm like you...I've been on Zithromax and Mepron now for a month and actually feel about the same. I can work out most of the time and I only had one night of the cold sweats that are associated with mepron.
For all I know I need to increase my doses of all this or change to a new med, and then I will feel worse,so maybe I'm speaking too soon, but at least so far so good!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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