I just had my second LLMD visit. I've been on abx for 3 months now taking generic Biaxin (Clarythrimcin ER). I went to LLMD and was in tears when he told me to expect to be seeing him for the next 3 or 4 years.
I'm so scared. So discouraged. I know I've been sick for awhile (lots of neuro symptoms and many more) and I'm in the baby steps of treatment but when he said 3 or 4 years, I just don't see how I can do it. I burst out in tears right there in the office. I'm a mess now after the long trip home.
He told me to stop pitying myself, that others have it much worse. I know that is true that many of you are coping much more cheerfully than I have been. I've read many posts on this board and I know that there are tremendously courageous people who have suffered and who still are suffering far more than I have.
I really do try. I'm just in so much pain and it's gone on for so long now. I just don't know how much more I can take. I cry and cry and can't stop. My family just left and I'll be all alone tonight. I've been crying now for hours.
I have cycles where it's so hard to breathe with chest pressure and that scares me. The shortness of breath always comes midmorning and again later afternoon/early evening. The hyperacusis makes every normal activity a nightmare.
I like and respect my LLMD. He does seem to really care and I know with all the pressure on LLMDs he wouldn't be sticking his neck out to help if he didn't care.
I felt like I had been slapped when he told me to stop pitying myself. I don't think I am. I think I just try to hold it all in and when he told me how long he thinks it will be before I get better, well, the dam just broke.
I'm hoping it was just tough love. I know he's only there to help. Many of you have said he is wonderful and he gets many people better.
I just can't see the light at the end of the tunnel. When does the misery end and healing begin? How do you guys find the strength to go on?
I'm not suicidal, just very scared and very discouraged. I left my first apt with him with so much hope. Now I think I have less hope than ever before- even when I didn't know what was wrong and every Dr. told me it was all in my head.
How do I cope with the shortness of breath? The not being able to think? To remember? How do I keep fighting this when I passed being knocked flat over a year ago? Please anyone out there respond. What helps?
Posted by kam (Member # 3410) on :
First off motownlyme....which i had thought of that pen name.
Secondly, you came here and posted. Give yourself a pat on the back. Coming to this site has been one of the major keys that have helped me get through this.
Thirdly, I bet your next visit with your lyme doc will go better.
OK enough of the number stuff.
I have a counselor that comes to the house. She just left. She is new. But, it looks like she is going to help.
I am totally exhausted and my body is shaking inside due to trying to do the best I can while she is here and take in all that is being said and say what comes to my mind.
She is bringing a tupperware like tool box for me at the next visit. The idea being I will think of things to help me re focus and cope with all that you mentioned that happens when our brains are bugged.
I will put these things in my tool box. Hey. It will not be the first time I have tried something out of desperation or hope.
Hope...that sounds like what you need. I give you the gift of hope.
There is hope. It does get better. I have seen this with myself and with others.
Gosh...I am thinking it is good you did not give up and you continued to look for answers. You have an inner strength and courage.
I am sure others will come along with more helpful information.
Posted by motownlyme (Member # 11485) on :
kam
Thank you so much for your encouraging words. I'm sorry you're struggling too. I have a therapist but she's out for a few weeks otherwise I'd probably be calling her. I know we will get better, both of us. Sometimes it's so hard to see that light though.
How long have you been sick, if you don't mind me asking? Motown is short for Morgantown - where I live. I'm glad you like it.
Posted by pmerv (Member # 1504) on :
Mo, just remember the bugs are actually in your brain - that's part of the reason why you cry and generally have a lot of ups and downs with Lyme. My lymed son cried for months over a girlfriend HE had broken up with, before we knew he had Lyme. His new girlfriend wasn't too happy about it.
It should get better as you reduce the number of spirochetes. Even with treatment, many people have ups and downs.
Your doctor needs a lesson in communication, or something. What a dumb thing to say. Like the dr who told my lymed 20-year old daughter, "Maybe you should get married!" I'm not sure if it was a joke or just a cover-up for him not knowing what the heck to do or say, but he needed a lesson in communication, too.
Hang in there.
Posted by sixgoofykids (Member # 11141) on :
The shortness of breath sounds like babesia, but I'm sure people with more experience than me will chime in here.
I've also been being treated for three months and am getting ready to see my LLMD next month. I know I'm in it for the long haul, too.
I'm being treated for babesia and Lyme. I'm on a ton of medications, and even more supplements!
In the beginning, I couldn't tell the difference between 'normal bad' and 'herxing bad' because normal bad was so bad! Now I feel somewhat better between herxes, up to 35% from 15%. The past two days I even had enough brain power to balance the checkbook, something I hadn't done since October!
Look for the small steps you are making. It will take a long time, but as time goes on, you will get better and better. Just because you're seeing an LLMD for four years doesn't mean you will feel really bad for the whole time.
I'm sick of it all, too, but we weren't given a choice. I find I cry during and near a herx ... I tend to think it's another form of detoxing ... it's almost like we need it, and I usually feel a tiny bit better afterward.
I hope someone says something about babs, because if you have a coinfection, they need to be treated first.
Posted by AZURE WISH (Member # 804) on :
Hang in there.
Even if you do need to go to him for 3 to 4 years does not mean you are going to feel as awful as you do now for 3 - 4 years.
If you treat a little while past symptoms being present than you could be much better (and functional ) for quite some time while trying to beat the last lingering syptoms out of your system.
Plus he may have been erring on the side of caution because it seems that when coinfections are involved it is more difficult to treat. Especially considering that the tests dont always show the presence of coinfections it can be tricky.
I dont think when he was saying 3 to 4 years of being so sick you have severe problems that hinder your life like you do now...
I think he was saying thats how long he estimates it may take for him to be sure you are ALL the way through this.
It can be a roller coaster ride with the herxes. But eventually you will have more good days than bad and eventually things will be ok.
THat is how I cope... hold onto hope (even when I feel so awful) and I just have to believe that things will be ok at somepoint and if it isnt today thats ok.
I also have faith in myself that I will get through it - whatever new hell lyme disease decides to cast me into.. I know I will make it out.
Also taking one day at a time helps.
Hang in there things will get better Posted by motownlyme (Member # 11485) on :
Thanks so much to all of you for your good suggestions. I feel like I'm so alone in this because I can't describe to my Mom and husband what I'm actually going through. They try and they do everything they can. Thank God they don't know first hand.
You guys understand because you are right there on the road with me. When I say "head pressure" and "it gets so hard to breathe" you know what I mean. I'm sorry we're here at all, but if I have to be then I'm glad it's with such great people. I'll be saying a prayer for all of us tonight.
Posted by Vermont_Lymie (Member # 9780) on :
Hi motownlyme,
Yes, it is really difficult to absorb all this news at first. I started treatment last summer, and was hoping that six months of treatment for lyme would restore me back to my old self.
It took a while to accept that it is going to take quite a bit longer than that, and no one can really say how long -- one year, two years, three ?
Taking one day at a time helps.
If you have shortness of breath, which I had, you may have babesia, a lyme co-infection. I know, I did not want to hear about that at first, but the good news there is that after two months of treatment for babesia my lungs feel better than they have in many years.
You have a good and caring doctor, which helps, (though that was a bit of a rough comment that he made.)
Can you find a support group in your area?
Hang in there! You will be feeling better now that you have started treatment, but the lyme treatment itself often has a bumpy course with lots of ups and downs. lymenet is a great support, so feel free to do alot of complaining and discussing here!
Best wishes for your health.
Posted by lou (Member # 81) on :
I have had things said to me that should not have been said by doctors. Sometimes it is because they really are heartless and don't care, other times it is because they are overwhelmed themselves and can only cope with the medical side of chronic illness, can't stand to be counselor, friend too. For the docs who treat us are experiencing stress with every patient, and there are so many who got there late when it is harder to treat and takes longer.
Sometimes it helps to just say these things in a safe place, to people who understand and won't judge, which is what you have done here. If at your next appointment, you mention that you are getting help coping, and that you were bothered by his remark but understand that he experiences the pressures of having so many lives in his care......well, it would show that you are reaching out and are not going to be entirely dependent on him for everything.
Don't you think there are a lot of people who respond this way, out of fear that more will be asked of them than they can possibly provide? Talking now about more than just medical people.
And I think it was good advice to remember that spirochetes too can affect emotions.
Finally, although a doctor's office might not be a good place to express it, people have every right to be sad and daunted by their illnesses. This is a natural and human reaction, and is the reason for support groups, this one or others.
Posted by Vanilla (Member # 11155) on :
You will not be feeling badly for the next 4 years - things get better and you will start to feel better. I started treatment in 2006 and I do still have little stamina but I do feel better and happier too.
Posted by Geneal (Member # 10375) on :
I cope one day at a time.
I realized yesterday that I am in for the long haul too.
Been on antibx. since Oct. 2006....
Am to start 90 days of levaquin for bart.
Followed by 90 of malarone (again) for babs....
Then we can go after the Lyme....
If you add in the two months of being symptom free while on antibx....well, let's just say
I may be on meds for a while longer.
However, I am grateful that we know What is wrong with me.
Am treating it instead of being given xanax or paxil for "anxiety".
I don't think that far ahead....just one day, one herx, one co-infection at a time.
I am going to get there (remission) and you will too.
Who knows? You may find the "right" cocktail for you and get well quicker.
It has been posted here many times, but I believe it whole heartedly.
Slow and steady wins the race.
I met a man yesterday (sitting in LLMD's office) who has been on meds for 3 years.
This is for lyme following a two year treatment for Lupus (steroids) that he said almost killed him.
At least I didn't have two years of "wasted" treatment. I am greatful for that.
If someone told me that I had to be on antibiotics for the rest of my life, so that I could
Have quality of life.....I would do it without question.
Try to tackle one day at a time.
Sometimes when you are in the tunnel, it is hard to see the light at the end of it.
But it is there.
Hugs,
Geneal
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sixgoofykids: The shortness of breath sounds like babesia, but I'm sure people with more experience than me will chime in here.
......................... Just because you're seeing an LLMD for four years doesn't mean you will feel really bad for the whole time.
Ditto!!! Make sure you get treated for babesia even if the test came back negative!!!
You WILL be feeling better way before 4 yrs, but you will likely need to keep your appointments with your LLMD for that long!!
I still see my LLMD and I began treatment in Aug 2000. I'm doing great!
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