Nyxie63's Profile
Mood:
Nyxie63 is
going to be away until the 20th
About Me:
Female, 44, Pottstown - PA
2/05 GERD
3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)... [More]
3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)... [More]
Since you gals have been wondering....
Apr 11, 2008 06:19AM
- 3 comments
Health saga, Part 2.
Had an appt with the lyme doc on Monday.
My viral and immune tests came back. I had slightly elevated results for both Epstein-Barr and HHV-6. Now whether that's indiciative of a past infection or a chronic infection is hard to tell without other testing. Don't really want to think about it, yet it niggles my brain.
The immune testing was far more interesting and telling. It looks like my immune system is poop. At least on paper. Most of my tests came back at the very bottom of the ranges. The IgG1 subclass came back waaaaay below range. Something's definitely going on. Now whether this is from lyme, or from babs, bart, the viruses, or something else, who knows?
Also had a hs-CRP test done (this is for inflammation). It came back high. Yeah, no kidding.
And my sed rate is at 3. It should be somewhere between 10-15. I got thick blood, most likely due to an excess of fibrin. No wonder my feet could substitute for ice cubes at any given time.
The doc decided to treat me for bart and babs (both tick-transmitted diseases), based on symptoms, in spite of negative testing. I start Levaquin and Malarone this week. Am spacing them 3 days apart so if I have a reaction, I'll know to which drug. She also switched my doxy to mino to see if that helps with the nausea.
And I'm getting a brain MRI, with and without contrast. Since the olfactory hallucinations are back, along with pain and pressure on the top of my head, she's thinking inflammation. I'm actually looking forward to this. Would be interesting to know if I have white matter lesions or not. Might explain a few things.
I'm still in research mode, trying to figure out what's going on. Kind of hard to wrap my brain around all this, consider it's difficult enough to get my shoes on the right feet most days. Still, if I gain even a morsel of info from all the reading, it's worth the effort.
I started the Mino on Wednesday. It's been kicking my butt. I don't know if this is a herx (bugs dying off) or if it's side effects from the Mino. Extreme fatigue, vertigo, light headed, all-over weakness, tingling is a LOT worse, feels like my brain is doing the hula. Hopefully, this will pass soon. Will be starting the Malarone tomorrow and the Levaquin on Tuesday.
Had an appt with the lyme doc on Monday.
My viral and immune tests came back. I had slightly elevated results for both Epstein-Barr and HHV-6. Now whether that's indiciative of a past infection or a chronic infection is hard to tell without other testing. Don't really want to think about it, yet it niggles my brain.
The immune testing was far more interesting and telling. It looks like my immune system is poop. At least on paper. Most of my tests came back at the very bottom of the ranges. The IgG1 subclass came back waaaaay below range. Something's definitely going on. Now whether this is from lyme, or from babs, bart, the viruses, or something else, who knows?
Also had a hs-CRP test done (this is for inflammation). It came back high. Yeah, no kidding.
And my sed rate is at 3. It should be somewhere between 10-15. I got thick blood, most likely due to an excess of fibrin. No wonder my feet could substitute for ice cubes at any given time.
The doc decided to treat me for bart and babs (both tick-transmitted diseases), based on symptoms, in spite of negative testing. I start Levaquin and Malarone this week. Am spacing them 3 days apart so if I have a reaction, I'll know to which drug. She also switched my doxy to mino to see if that helps with the nausea.
And I'm getting a brain MRI, with and without contrast. Since the olfactory hallucinations are back, along with pain and pressure on the top of my head, she's thinking inflammation. I'm actually looking forward to this. Would be interesting to know if I have white matter lesions or not. Might explain a few things.
I'm still in research mode, trying to figure out what's going on. Kind of hard to wrap my brain around all this, consider it's difficult enough to get my shoes on the right feet most days. Still, if I gain even a morsel of info from all the reading, it's worth the effort.
I started the Mino on Wednesday. It's been kicking my butt. I don't know if this is a herx (bugs dying off) or if it's side effects from the Mino. Extreme fatigue, vertigo, light headed, all-over weakness, tingling is a LOT worse, feels like my brain is doing the hula. Hopefully, this will pass soon. Will be starting the Malarone tomorrow and the Levaquin on Tuesday.
by DLA, Apr 11, 2008 01:21PM
WOW chickadee! Can't wrap my mind around hardly any of that.
Hope that all this gets you some relief really soon! Take care of yourself and keep me up to date. REALLY miss you on here, but understand how hard things are for you right now.
*SMOOCH* to you too. Along with a great big bear hug!
Dac
Hope that all this gets you some relief really soon! Take care of yourself and keep me up to date. REALLY miss you on here, but understand how hard things are for you right now.
*SMOOCH* to you too. Along with a great big bear hug!
Dac
by Fedup4doctors, Apr 16, 2008 12:17PM
WOW ! I can kinda wrap my head around that, actually quite well. I hope the best for you and thank u for your help.
So I take it you have Lyme disease and other. What are those two tests again? Do you mind telling me how it is treated? I thought just antibiotics was all, but it sound like in your case perhaps more of an ordeal than that? Is there permanent health problems and damage after being treated for Lyme?
Wishing you the very best today, each day at a time.
Fedup4doctors
So I take it you have Lyme disease and other. What are those two tests again? Do you mind telling me how it is treated? I thought just antibiotics was all, but it sound like in your case perhaps more of an ordeal than that? Is there permanent health problems and damage after being treated for Lyme?
Wishing you the very best today, each day at a time.
Fedup4doctors
by Nyxie63, Apr 17, 2008 09:23AM
Thanks! :)
Haven't spent a whole lot of time here. Busy putting out other fires. And I haven't felt too well lately.
Fedup,
The two tests you need are the IgM and IgG Western Blots. Don't bother with the Elisa unless the WBs come back negative. Then it might be worth a try.
Lyme is usually treated with antibiotics and other drugs. I'm currently on 2 antibiotics, 2 antimalarial drugs, and an antifungal to keep yeast growth down. I'll probably be in treatment for at least a year, if not longer. That isn't uncommon for lyme patients who are seeing an LLMD (lyme-literate medical doctor).
Also bear in mind that it's highly unusual for someone to just have Lyme. Most people have co-infections such as babesia or bartonella, in spite of what a lot of "common" knowledge might be (among many docs).
There can be permanent problems. There's a lot of controversy revolving around chronic lyme and post-lyme syndrome. Some docs will say it's all in your head... and we've all heard far too much of that nonsense. Some people are genetically pre-disposed to having problems with lyme treatment. There's also a school of thought that suggests once lyme is firmly established in your body, there's no way to totally eradicate it (highly controversial). A lot of people do get completely better. Some get better but have occasional relapses. Others have to accept that they're going to get to a point where most symptoms are gone and they'll just have to live with what's left over. Lyme also has a tendency to trigger autoimmune diseases.
Unfortunately, in lyme, there are no set answers. Not for testing, not for treatment, not for symptoms, and certainly not for any individual. It's a very "personal" illness. We all respond differently. The only thing most of us have in common is that darned bug.
I'm not trying to discourage you. There is hope. Many people undergo treatment and get better. I've seen improvements in the six short weeks I've been in treatment. I also know there's a long road ahead of me.
Please let me know when you're getting tested and what the results are. I'll be happy to send you some info on how to read the WBs for yourself or can give you a hand with interpetation. Call on me anytime. :)
Haven't spent a whole lot of time here. Busy putting out other fires. And I haven't felt too well lately.
Fedup,
The two tests you need are the IgM and IgG Western Blots. Don't bother with the Elisa unless the WBs come back negative. Then it might be worth a try.
Lyme is usually treated with antibiotics and other drugs. I'm currently on 2 antibiotics, 2 antimalarial drugs, and an antifungal to keep yeast growth down. I'll probably be in treatment for at least a year, if not longer. That isn't uncommon for lyme patients who are seeing an LLMD (lyme-literate medical doctor).
Also bear in mind that it's highly unusual for someone to just have Lyme. Most people have co-infections such as babesia or bartonella, in spite of what a lot of "common" knowledge might be (among many docs).
There can be permanent problems. There's a lot of controversy revolving around chronic lyme and post-lyme syndrome. Some docs will say it's all in your head... and we've all heard far too much of that nonsense. Some people are genetically pre-disposed to having problems with lyme treatment. There's also a school of thought that suggests once lyme is firmly established in your body, there's no way to totally eradicate it (highly controversial). A lot of people do get completely better. Some get better but have occasional relapses. Others have to accept that they're going to get to a point where most symptoms are gone and they'll just have to live with what's left over. Lyme also has a tendency to trigger autoimmune diseases.
Unfortunately, in lyme, there are no set answers. Not for testing, not for treatment, not for symptoms, and certainly not for any individual. It's a very "personal" illness. We all respond differently. The only thing most of us have in common is that darned bug.
I'm not trying to discourage you. There is hope. Many people undergo treatment and get better. I've seen improvements in the six short weeks I've been in treatment. I also know there's a long road ahead of me.
Please let me know when you're getting tested and what the results are. I'll be happy to send you some info on how to read the WBs for yourself or can give you a hand with interpetation. Call on me anytime. :)
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