posted
Hi, Like most of you, I've been suffering for a long time with chronic fatigue, pain, neuro symptoms, fog - I could go on but looks like you all know the story. LSS - Bad flu 10+ yrs ago, was never the same since. 9 yrs ago tested positive (finally) for Lyme and was treated for a few months with antibiotics. Since then have not tested positive but have been going through hell most of the time with short times of feeling okay in between. Started meds for fibromyalgia. Recently my primary decided it wasn't fibro because although I had pain in all the points at some time, didn't have tenderness in many points at once. RE-evaluated it, went to many drs who conflicted fibro/no fibro. Frustrating. Last Rheumatologist said I was depressed and needed a psyc to manage my meds. ???? Getting there I guess. Psyc said I cheered her up. Ran some new blood work and EBV is flagged, convalescent or chronic/reacctivated phase, numbers off the charts. But I've suspected neuro lyme forever, can't seem to find a dr that will say anything other than I keep getting reinfected, there is no chronic lyme. The current blood work shows Igg p41 present and Igg P18 present. I saw something that EBV can sometimes appear with lyme antibodies, but I'm confused. Of course, I'm going to follow up with a llmd as soon as I can get an appt but thought I'd write to see if anyone thought this is late stage lyme or the EBV getting involved?
Regardless of what happens, I feel for each and every one of you. It is horrifying how my life has changed, luckily I have health insurance and a supportive family. I know others aren't as lucky. I hope you all find answers and get well.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Breaking this up for those of us with neuro lyme..
Like most of you, I've been suffering for a long time with chronic fatigue, pain, neuro symptoms, fog - I could go on but looks like you all know the story.
LSS - Bad flu 10+ yrs ago, was never the same since.
9 yrs ago tested positive (finally) for Lyme and was treated for a few months with antibiotics.
Since then have not tested positive but have been going through hell most of the time with short times of feeling okay in between.
Started meds for fibromyalgia. Recently my primary decided it wasn't fibro because although I had pain in all the points at some time, didn't have tenderness in many points at once.
RE-evaluated it, went to many drs who conflicted fibro/no fibro.
Frustrating. Last Rheumatologist said I was depressed and needed a psyc to manage my meds. ????
Getting there I guess.
Psyc said I cheered her up.
Ran some new blood work and EBV is flagged, convalescent or chronic/reacctivated phase, numbers off the charts.
But I've suspected neuro lyme forever, can't seem to find a dr that will say anything other than I keep getting reinfected, there is no chronic lyme.
The current blood work shows Igg p41 present and Igg P18 present.
I saw something that EBV can sometimes appear with lyme antibodies, but I'm confused.
Of course, I'm going to follow up with a llmd as soon as I can get an appt but thought I'd write to see if anyone thought this is late stage lyme or the EBV getting involved?
Regardless of what happens, I feel for each and every one of you.
It is horrifying how my life has changed, luckily I have health insurance and a supportive family.
I know others aren't as lucky. I hope you all find answers and get well.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Welcome. Glad to hear you are going to a LLMD.
Looking forward to your report after seeing him or her.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I definitely went through the 'it's fibro, you're depressed, etc.' wheel o' diagnoses, and I know a lot of other people here have as well.
My PCP seems to think it's more likely that I did have Lyme (after all, the bloodwork was positive), but it was cured after 30 days of antibiotics, and turned into fibromyalgia. Which continued to respond to antibiotics. Which fibro doesn't do. But it couldn't be Lyme.
I know that my bloodwork came back with all sorts of interesting things, like EBV and... oh, what's the other one? Something with a C? Anyway, it seems I was so used to being tired all the time, that I didn't even notice having mono.
At any rate, getting correctly diagnosed and treated can be so draining, and I'm glad to see you're on the right track now.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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bettyg
Unregistered
posted
god bless you kam for breaking up her solid block post for majority of us with NEURO lyme who can't read or comprehend it as is!!!
please post in SEEKING DR. forum; show the largest 6-8 cities CLOSEST to you in a NEW POST there and at beginning of your post!!
please copy KAM'S BROKEN UP VERSION THERE so they can read that as well when advising you.
go to lower left hand side and mark box to receive all replies to your post! click send *********************************
yes, you do have chornic lyme; i'm sure EBV is involved too; it is for me!
thanks for history you gave us all. please break up posts/replies in future or we have to scroll on by, sob; instrutions below.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
***************
POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
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posted
it's OK TO LEAVE THIS HERE; it gives us your history which comes in handy.
thanks for copying KAM'S broken up version there!
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hello and welcome to Lymenet
Just goes to show you how willing the quacks in NJ (tick central) are to slap the 'Fibro' label on you. Sounds like we could have went to the same morons. But heaven forbid you use the L word..
Keep reading and you will see your life on this board. Get to an LLMD and run from the Rheumy!!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi Again and welcome to Lymenet!
I'm sure that you'll find this site a relative treasure trove of very valuable information.
And not to mention a great place for support!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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