I just got back from my doctor's appointment today and I'm very discouraged. He doesn't even seem to have an ounce of hope left for me. He said I'm one of the sickest and he's not sure what he can do for me.
Basically I've been on aggressive treatment for one year. I'm currently on iv rocephin, augmentin, amanadine, minocycline, flagyl,mepron,valtrex. The only thing that slightly improved was my brain fog, but I am in worse pain than when I started.
He pretty much told me what was left is the "fibro" pain I've had all these years. I have always been in pain but not as near death as the past year. He said you are not going to get the musculoskeletal pain in lyme as in fibro. But my muscles, especially the large muscles of my body have never felt like this even with the "fibro".
But in 2007 this same doc tested me for lyme, the overall lyme result was negative, I was reactive to band 58 only, but from what I have found this wouold have been enough to treat me for lyme back then. So I guess from what my doctor is saying if I was treated back then for lyme, the meds would not have helped me at all because I didn't have lyme back then?
I also told him, after I started the mepron I did have a herx so maybe we should add something or increase the mepron for babesia? he did not
So he wrote an order for zofran to keep my head out of the toilet and benicar to help with detox. And I'm to continue the same combo of meds I've been on this combo since beginning of August, I think.
I can take someone telling me to hang in there this may take a while, that gives me a little hope, but after today I'm desperate. I'm not crying, I wish I was, I'm just numb. My only hope is Dr. H in NY, app is in Feb. to get a fresh set of eyes and maybe some different ideas and also hope for a cancellation.
I am willing to try different things, I was looking into a coil machine but cannot spend almost two thousand dollars on something that may or may not work and do not have the ability right now to comprehend the different programs or frequencies to use.
I don't even know what my questions are, if anyone has any input or ideas, they are welcome. thanks
Posted by FamilyFive (Member # 37206) on :
Hi shannon,
You need to get to a new LLMD. Another Dr will add different experience that could really help you! Many people change LLMD's and see renewed progress. Another option would be to go to an LLND... naturopath who used more of an herbal approach.
I don't know enough about your history to know how you should be treated, but my doctor refuses to put my on flagyl until I'm showing almost no symptoms of babs.
I asked her why she wouldn't put me on flagyl now and she told me I would be in so much pain from all the cysts coming out that I'd never make it through treatment. She wants to take care of most of my babs pain first... before I get slammed with lyme symptoms again.
When I was sickest (pre-treatment), my symptoms were severe joint AND muscle pain. My muscular pain was so bad I was on the couch most of the time and was pretty debilitated. Now I am at least 75% better physically (from joint & muscle pain). I still have other issues and herx with brain fog, but it's nothing like when the chronic pain was so bad.
I wish you LUCK! If you want Baltimore/MD LLMD recommendations, let me know.
Posted by shannon12 (Member # 36149) on :
FamilyFive-thanks, I know I broke down and made an appointment w/Dr. H in NY a little while ago,I hope I'm doing the right thing, at this point I will see whoever I need to see, and from the research I've done and watching his lectures and from what people have said I chose him.
I also asked today why I had never been tested for bartonella, he said the meds you are and were on would kill that too. But I hear otherwise.
The neck, back pain arm pain , leg pain, everything, it's unreal my gluts in my butt are throbbing in pain.
Posted by undiagnosed22 (Member # 28152) on :
Hi Shannon,
Im so sorry you are feeling this way. I had AWFUL muscle pain and tightness at the beginning of my illness 2 years ago. I couldn't even turn my neck from side to side and with treatment, it is SO much better. I still have extreme discomfort but at least I am not in pain anymore so it can get better.
I see Dr. H in NY - he's wonderful. But, if you ask to see his PA, L, you should be able to get in much sooner than February. She is awesome too.
Posted by shannon12 (Member # 36149) on :
undiagnosed-thanks, no I told them I'd see any of his pa's and the soonest one was only a week sooner than feb 14..so I just took the one w/the doc. I did tell them, if they have a cancellation I will take it with any of them.
this gives me a little hope.
Posted by Ellen101 (Member # 35432) on :
Shannon try to hang in there. I know the muscle pain you are describing all too well. The glute muscle pain in the buttocks is the worst!
It sounds like maybe you could be on too much at once?? My LLNP would not put me on a cyst buster until my pain was under control as she said I would not make it through treatment, get discouraged and quit.
At this point with so many meds it is difficult to be able to tell what is causing what. I think a fresh perspective with a new LLMD may help alot.
If you have not already I would encourage you to check out this site. He may also be somebody you may consider going to. He does consults via skype as well. On Tuesday nights there are webinars you can participate in and there is a facebook page to ask questions on. http://www.treatlyme.net/ Posted by xoxoxox (Member # 18778) on :
Shannon- Something that was key for me to getting an earlier appt was that I called every few days and politely ask if any cancellations had come up and if not, requested that they please keep me in mind. I just kept doing this and then one day there actually was a cancellation I could take. They became aware of my name and knew how eager I was to get in.
If you do get in earlier, be sure to cancel the Feb appt at some point so you don't get dinged for both.
Posted by shannon12 (Member # 36149) on :
xoxo-thank you i will do this.
Posted by WhitneyS (Member # 25666) on :
Shannon-- Dont listen to this Dr and get a new one!
1 year treating Lyme is nothing! This Dr is doing you a favor by letting you know he doesnt think there is anything HE can do for you....that means time to move onto someone else who CAN.
There are a few other good LLMDs in your neck of the woods, i would maybe consider them too. Dont loose hope, time to get aggressive!
Posted by mlg (Member # 35383) on :
Hi Don't get discouraged. My LLMD has also told me I Am a difficult case. I added a homeopathic doctor that does PEMF and accupuncture. I am doing better. I just got in to make apptment with another LLMD to attack the parasites.
Posted by shannon12 (Member # 36149) on :
Whitney and mlg--thank you I switched docs, should have a few months ago at least, just hope my one year of treatment did something good.