Aa
Update on myself
Hi Jackie and everyone....
Just thought I'd send an update. I've been off ABX since Feb/Mar because of a bad case of acid reflux that had settled in. Not sure what caused it but it took a good five/six months for me to get my tummy back in order.
My tingling/vibrating issues are mostly at bay right now but recently, I seem to be having an issue with sometimes really bad fatigue and joint/muscle pain. Some days are worse than others. I do not know what is causing this other than lyme disease. Overall though, I must admit that I'll take the pain over the acid reflux. That stuff makes me more miserable than anything! I do have what I'll call some permanent nerve damage in my left leg. It doesn't cause any pain or anything but when I touch my upper leg or shave, I have tingling all the way down to my toes. This has not changed for over a year.
Anyway, I switched from my LLMD to an LLND a while ago. I'm not sure I made the right decision doing that and am thinking about calling my original LLMD back up. I hope he'll take me back if I decide to go that route.
I am awaiting results of that new lyme test through Advanced Labs and then just decided that I want to retest through Igenex since I was originally tested through them to see where I'm at compared to my original tests.
Also, and this is really bad I know, but I just finished a six day course of Prednisone because I'm having some really bad problems with my front tooth (I fell a year ago and broke my front tooth and having been having problems with it ever since...even after two root canals). I asked my LLND before starting these steroids and he said that six days would be fine. Anyhow, unfortunately, the steriods did nothing (except make my pain worse I think).
When Lymies talk about pain are they talking about the kind of pain that I am describing? OMG...I feel like everything is tight, my glutes feel like they are spasming causing pain down my hamstrings, my shoulders hurt causing pain down my arms - left one especially, my neck is tight, my toes hurt, my fingers hurt...etc...everything hurts! And the fatigue...it's weird but I'll wake up full of energy and then BAM....I feel like I just need to close my eyes and rest.
Oh....ear ringing....having an issue with that for a few months now...
Overall though, mentally, I'm in a much better place than I was a year or two ago.. I just know that I need to get back on treatment soon!
I'll post again when I get my new tests done.
Hope you are all doing well!
Just thought I'd send an update. I've been off ABX since Feb/Mar because of a bad case of acid reflux that had settled in. Not sure what caused it but it took a good five/six months for me to get my tummy back in order.
My tingling/vibrating issues are mostly at bay right now but recently, I seem to be having an issue with sometimes really bad fatigue and joint/muscle pain. Some days are worse than others. I do not know what is causing this other than lyme disease. Overall though, I must admit that I'll take the pain over the acid reflux. That stuff makes me more miserable than anything! I do have what I'll call some permanent nerve damage in my left leg. It doesn't cause any pain or anything but when I touch my upper leg or shave, I have tingling all the way down to my toes. This has not changed for over a year.
Anyway, I switched from my LLMD to an LLND a while ago. I'm not sure I made the right decision doing that and am thinking about calling my original LLMD back up. I hope he'll take me back if I decide to go that route.
I am awaiting results of that new lyme test through Advanced Labs and then just decided that I want to retest through Igenex since I was originally tested through them to see where I'm at compared to my original tests.
Also, and this is really bad I know, but I just finished a six day course of Prednisone because I'm having some really bad problems with my front tooth (I fell a year ago and broke my front tooth and having been having problems with it ever since...even after two root canals). I asked my LLND before starting these steroids and he said that six days would be fine. Anyhow, unfortunately, the steriods did nothing (except make my pain worse I think).
When Lymies talk about pain are they talking about the kind of pain that I am describing? OMG...I feel like everything is tight, my glutes feel like they are spasming causing pain down my hamstrings, my shoulders hurt causing pain down my arms - left one especially, my neck is tight, my toes hurt, my fingers hurt...etc...everything hurts! And the fatigue...it's weird but I'll wake up full of energy and then BAM....I feel like I just need to close my eyes and rest.
Oh....ear ringing....having an issue with that for a few months now...
Overall though, mentally, I'm in a much better place than I was a year or two ago.. I just know that I need to get back on treatment soon!
I'll post again when I get my new tests done.
Hope you are all doing well!
Ditto! I want my life back, too!
the pain and extreme fatigue.. got that.. stabbing bone pain.. funny how i stated feeling better on ceftin and plaquinil. this July/Aug (after i tried doxy for a month it didn't help)
ran out of ceftin but had a refill of plaquinil ...
when the symptoms came back after a few weeks. being off meds i started the plaquinil and after 10 days i am feeling better again.
my igenx tests are not back still!
my take is..
if i felt better on ABX then it could not be a virus, i have HEP C they keep saying my pain and fatigue is from that... or the fibro they said i had.
i must have a bug. it got in my brain and heck
just give me azrithameycin and plaquinil and kill the dam Barts already!
sooon..
we will all get better soon.. we just have to go to a gazillion docs and get a gazillion tests and then be strong and say say hey! ..
write me a script for ABX ( fill in your choice after you do the research) something for pain ,and that i want and something for anxiety.
i want my life back
ran out of ceftin but had a refill of plaquinil ...
when the symptoms came back after a few weeks. being off meds i started the plaquinil and after 10 days i am feeling better again.
my igenx tests are not back still!
my take is..
if i felt better on ABX then it could not be a virus, i have HEP C they keep saying my pain and fatigue is from that... or the fibro they said i had.
i must have a bug. it got in my brain and heck
just give me azrithameycin and plaquinil and kill the dam Barts already!
sooon..
we will all get better soon.. we just have to go to a gazillion docs and get a gazillion tests and then be strong and say say hey! ..
write me a script for ABX ( fill in your choice after you do the research) something for pain ,and that i want and something for anxiety.
i want my life back
Ricobord: I have been tested for Bartonella but it always comes back negative. However, I sometimes wonder about it because many of the symptoms that I had when I first presented with symptoms were "bartonella like". Especially the bottom of the foot pain!
Thanks Wonko for your comments and healing thoughts.
Today I drove myself to Igenex Labs for a new blood draw. It's been a long time since I've been tested, so I thought I would get a fresh test to see where I'm at compared to a year ago.
Also... I am correcting again my stop date on ABX...it WAS Feb/March 2012...not 2011. So, that would be this last Feb/March and that is when all my digestion issues started.
Anyhow, my appt is on 9/25/12 and I will then get the results of all my tests and then make some decisions on my treatment. I'm anxious to get restarted on treatment and beat this thing called Lyme!!!
Thanks Wonko for your comments and healing thoughts.
Today I drove myself to Igenex Labs for a new blood draw. It's been a long time since I've been tested, so I thought I would get a fresh test to see where I'm at compared to a year ago.
Also... I am correcting again my stop date on ABX...it WAS Feb/March 2012...not 2011. So, that would be this last Feb/March and that is when all my digestion issues started.
Anyhow, my appt is on 9/25/12 and I will then get the results of all my tests and then make some decisions on my treatment. I'm anxious to get restarted on treatment and beat this thing called Lyme!!!
Sorry to hear about your ongoing problems. I'm very sorry you had to take steroids and am surprised your LLMD thought that was no big deal, esp. if you were not on any abx at the time, but I understand that you need to do what you need to do.
I know a lot of LLMD's are reluctant to use IV abx because they are so expensive and insurance won't cover them for the time needed for most chronic Lyme cases. (Non-medical opinion here, just what I've heard from my LLMD's and read from other patients). What I've heard is that being on IV for a short time can lead to short-term improvement, but can fail in the long term. I'm not trying to be depressing, just something you may want to ask your LLMD about when you have this discussion.
Luckily my pain doesn't get as bad as it used to but I remember the days when I felt like my muscles were super tight and even a light touch could be painful. I even bought an air mattress at one point because it actually hurt to be in my regular bed. I would get a lot of stabbing pain going down my limbs, as well as sharp localized pain that would migrate (one day in teeth, maybe the next my jaw, or shoulder, or neck...). Also eye pain and ear pain. But the good news is that I'm so much better now and rarely have pain, and when I do it is less severe.
I hope your doctor will work with you to figure out a good treatment plan for your case. I wouldn't worry too much about the doc "taking you back," and I can relate to changing docs and approach.
Good luck and healing thoughts your way...
I know a lot of LLMD's are reluctant to use IV abx because they are so expensive and insurance won't cover them for the time needed for most chronic Lyme cases. (Non-medical opinion here, just what I've heard from my LLMD's and read from other patients). What I've heard is that being on IV for a short time can lead to short-term improvement, but can fail in the long term. I'm not trying to be depressing, just something you may want to ask your LLMD about when you have this discussion.
Luckily my pain doesn't get as bad as it used to but I remember the days when I felt like my muscles were super tight and even a light touch could be painful. I even bought an air mattress at one point because it actually hurt to be in my regular bed. I would get a lot of stabbing pain going down my limbs, as well as sharp localized pain that would migrate (one day in teeth, maybe the next my jaw, or shoulder, or neck...). Also eye pain and ear pain. But the good news is that I'm so much better now and rarely have pain, and when I do it is less severe.
I hope your doctor will work with you to figure out a good treatment plan for your case. I wouldn't worry too much about the doc "taking you back," and I can relate to changing docs and approach.
Good luck and healing thoughts your way...
I would definitely stress with the LLMD your need to avoid stomach problems and therefore take IV treatment. Don't minimize the extent of the problems when you see the LLMD and be firm about it. I always try to be accommodating to the doc's inclinations, but there are limits, and if I were having the issues you are, I would stamp my tiny feet and make the doc deal with it. You go!
I have had a lot of tummy problems, too. I had horrible stomach pain and lots of digestive problems. When I was hospitalized for URQ abdominal pain and stomach pain, one nurse said my gut sounded like World War III. Stomach pain continued to be one of my top two worst symptoms for months.
Do you have Bartonella? I do... good old "Bell's Palsy of the Gut." I was put on Rifampin when I first started treatment and it gave me heartburn. I was put on Bicillin shots within 6-8 weeks of starting treatment in order to bypass my messed up gut and reduce the oral meds I was putting through there. My doc also ordered a GI analysis for me that showed I had h.pylori and campylobacter as well as unknown parasites. I also had a somewhat elevated yeast level, even before abx.
It does sound like you're ready to go back on the big guns, probably IV meds.
Do you have Bartonella? I do... good old "Bell's Palsy of the Gut." I was put on Rifampin when I first started treatment and it gave me heartburn. I was put on Bicillin shots within 6-8 weeks of starting treatment in order to bypass my messed up gut and reduce the oral meds I was putting through there. My doc also ordered a GI analysis for me that showed I had h.pylori and campylobacter as well as unknown parasites. I also had a somewhat elevated yeast level, even before abx.
It does sound like you're ready to go back on the big guns, probably IV meds.
Jackie:
Yes, I plan on insisting on IV Abx. Just waiting on test results so I know where to start. I think you saw the same LLMD that I was seeing. Do you think he'll be okay with taking me back and getting me on treatment? I hope he'll be open to the idea of IV Abx because I know he's mostly and Oral ABX kind of doctor on treatment.
Mojogal
I tried taking PPI's but honestly, my symptoms became horrible once I started taking them! I had some really bad throat clearing and thought maybe it was acid reflux back in February this year. I started taking OTC Prilosec and my then I started getting acid reflux type symptoms...I think I really messed up with my stomach acid balance because then I started taking all this different stuff to fix the problem. Oh...my stomach was a mess! Finally, I had to step back, go off of everything and let it all work out which it did. But...it took a while! I really think that the PPI's cause me to have too low stomach acid because I get a horrible lump in the throat and feel like I'm not digesting at all when I take them. I'm okay with a zantac every now and then, but nothing more than that.
Yes, I plan on insisting on IV Abx. Just waiting on test results so I know where to start. I think you saw the same LLMD that I was seeing. Do you think he'll be okay with taking me back and getting me on treatment? I hope he'll be open to the idea of IV Abx because I know he's mostly and Oral ABX kind of doctor on treatment.
Mojogal
I tried taking PPI's but honestly, my symptoms became horrible once I started taking them! I had some really bad throat clearing and thought maybe it was acid reflux back in February this year. I started taking OTC Prilosec and my then I started getting acid reflux type symptoms...I think I really messed up with my stomach acid balance because then I started taking all this different stuff to fix the problem. Oh...my stomach was a mess! Finally, I had to step back, go off of everything and let it all work out which it did. But...it took a while! I really think that the PPI's cause me to have too low stomach acid because I get a horrible lump in the throat and feel like I'm not digesting at all when I take them. I'm okay with a zantac every now and then, but nothing more than that.
Hi, I am sorry that you are having such a rough time.
I did want to tell you that the pain you describe is just like what I have. Mine can be extremely painful one day and not as bad the next. I see a chiropractor that helps a lot.
As for the acid reflux, I have had that for 30 years so was already on meds for it but my LLMD recommended taking them for anyone before starting oral abx.
I agree with Jackie to go back to your LLMD. I know of someone who thought they had permanent nerve damage but it went away after treatment.
I hope you feel better. Take care.
I did want to tell you that the pain you describe is just like what I have. Mine can be extremely painful one day and not as bad the next. I see a chiropractor that helps a lot.
As for the acid reflux, I have had that for 30 years so was already on meds for it but my LLMD recommended taking them for anyone before starting oral abx.
I agree with Jackie to go back to your LLMD. I know of someone who thought they had permanent nerve damage but it went away after treatment.
I hope you feel better. Take care.
Good to hear from you, but so sorry things have been rough. Owwie.
Are you taking magnesium supplements? That may help with the muscle cramping and some other symptoms. From my experience and other comments here, different formulations of Mg seem to make a big difference in effectiveness. Magnesium CAO (a combo of citrate, aspartate and orotate) works best for me; currently taking Mg malate, which is okay, but need to order some more CAO. Whatever gets ya through the day (and night), huh.
I would definitely stress with the LLMD the importance of avoiding stomach irritation going forward. Maybe IV is an option? Docs often don't think about side effects of treatment, which is all the more reason to stress to the docs the extent of the gastric problem and not to minimize it.
You go, girl! Take care, stay in touch -- good to hear from you --
Are you taking magnesium supplements? That may help with the muscle cramping and some other symptoms. From my experience and other comments here, different formulations of Mg seem to make a big difference in effectiveness. Magnesium CAO (a combo of citrate, aspartate and orotate) works best for me; currently taking Mg malate, which is okay, but need to order some more CAO. Whatever gets ya through the day (and night), huh.
I would definitely stress with the LLMD the importance of avoiding stomach irritation going forward. Maybe IV is an option? Docs often don't think about side effects of treatment, which is all the more reason to stress to the docs the extent of the gastric problem and not to minimize it.
You go, girl! Take care, stay in touch -- good to hear from you --
Oh....I've been off ABX since Feb/Mar of 2011....Wanted to clarify!
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