Well, some of you may remember me. I used to post here some 4 and 5 years ago. I had finally been diagnosed with Lyme at that time (after 10 years of doctor to doctor)and went through a 2 year treatment period.
During that time we tried all the usual abx and also a lot of the natural stuff as well. About two years ago my symptoms had pretty much resolved and, yes, for the last 2 years I've been doing pretty well.
Then low and behold, about a month ago, out of nowhere....BLAM and PHUEY. It has ALL come back with a vengence. I mean out of the blue.
So, here I am back at square one. Have an appt for later next month. I just can't believe it. Neither can my wife and kids who had to live through this before!
Wondering how many of you had a similar remission only to have a new flair in symptoms come back out after an extended time?
Oh, how frustrating. Thanks for letting me vent.
Formerly DaveinCt
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Dave,
I am no expert, but when I first started treatment, I thought that must be the worse thing to go through.
But, after hearing from others who have regained their health and then be flat on their back again, I still think it must be an awful thing to go through.
But, I also think it is something that is might be part of the picture.
The good news is, I have read about them regaining their health again.
So, hang in there.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Dave,
Did you not read the LymeNet rules?
Once you've left... you can't come back!
I ONLY wish that were true and NO one would have to.
But many do.. and in MY opinion it is so so so awful. Not only did Lyme zap us so badly... when we finally get some sort of a life back.. then ZOWIE!
I do believe a relapse is possibly the most depressing thing that happens to us in the whole big picture. I really do. And it is SO not fair.
The only decent thing about it.. and this really sucks but I am trying to make it seem not so nasty....
At least we know Lyme and we have experience with it. Who better to have to deal with it than someone who KNOWS it first hand.
Yes, I told you that would suck.. but it is about the best I can do at the moment.
Sometimes I try to make it feel better by saying, better me than an innocent child. But that doesn't make me feel too much better either.
I guess I just wanted to say hey... and let you know I've been there too. And to say, welcome back, although it may seem it is in a morbid sort of way.
But it will be nice to have you back with us... for a SHORT time!
My best wishes to you and yours.
Oh...
And if you HAVE to have Lyme... I can't think of any more beautiful place to have it than in the Lynchburg area.
To wake each day to see the sun and my glorious mountains... it would be a dream come true.... at least for me.
posted
I sympathize with you because I thought I was all better and then the Lyme came back. I was only sick for 4 months the first time, but now I'm sick again going on 4months. I'm in college and it's just really tough to get through. Know that you're not alone.
Posts: 55 | From Connecticut | Registered: Oct 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
The likeliest explanation is you got bit again.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
quote:Originally posted by pepper8: I sympathize with you because I thought I was all better and then the Lyme came back. I was only sick for 4 months the first time, but now I'm sick again going on 4months. I'm in college and it's just really tough to get through. Know that you're not alone. [/QB]
4 months? Sounds like you were undertreated.
Dave.... Sorry you had to come back here... but we're glad you chose the best Lyme support site once again!!
You'll make it! And yes,... you may have been bitten again.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
i remember you, dave. don't worry, you are so knowledgeable about you and tbd's.. you'll kick butt, no doubt, yet again.. and i suspect faster this time.
mosquitoes, ticks, stress.. it could be anything. but you're in the know and knowledge is power in these diseases.
blessings, mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So sorry to hear that you've relapsed or been bitten again.
I was sick for several years, didn't know what was wrong, was treated for another condition with abx and suddenly went into remission.
During that time I had symptoms of babesia but didn't know anything about TBI's so didn't know what was wrong.
I had a relapse 5 years later. I'm fairly certain it was a relapse and not another bite. I became very ill and disabled.
I didn't know I had lyme until a few years ago. Sooo, even though you are back here, you know what you have and can start treatment right away and look forward to another recovery.
Some things to consider: Have you been clinically evaluated and treated for co-infections? If so, are you sure they were erradicated? I believe quite a lot has been learned in the last 5 years about co-infections which seem to be a big reason for relapse.
There are several issues that may be partly why you are back here if this is a relapse and not a new bite. I don't know if they were well known when you were here before but I'll list what I remember of them in case you aren't aware of them.
Mercury or other heavy metals seem to allow borrelia and other infections including viruses to hang on.
Mold + lyme are a disaster for lyme patients. Some of us (estimated at 1/3 of the population), have difficulty making antibodies to get rid of mycotoxins (the toxins created by mold). This means that we get very sick when exposed to mold because the toxins stay in our bodies rather than being handled properly. They must be removed by mechanical means.
This same genetic problem can apply to borrelia toxins and spider bite toxins and a few other things. See a book called mold warriors for more information. Also: http://www.biotoxin.info/
From what I've been told, several doctors have found that many of their lyme and CFS patients have significant mutations. They can be worked around with nutrigenomics.
There are overlaps in symptoms with all these conditions and lyme. This means that you may actually have some of these issues that either exacerbate lyme or mimic the symptoms.
Anyway, this is a place to start.
Best wishes for a quick recovery, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Were you on any kind of maintenance program during your remission? (herbs, supplements, rife etc)
Good luck with treatment. Sorry you have to go through it again.
Best, DL
Posts: 925 | From California | Registered: Sep 2004
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hi dave,
so sorry you find yourself back here. i can relate; i was in remission (or near-remission) for two years and fell ill again last summer. finally gave in and restarted treatment in early november.
on the bright side, though, this time you know what's wrong, and you know what to do. you'll get through this.
Webmeg...no I didn't have any more WB's done and, by the way, I wouldn't say I ever really reached complete remission. I still have had occasional flairs but, they've usually been very mild and short in duration. Nothing like this current episode.
DolphinLady: The maintainence that I've used quite regularly has been Oregano oil (diluted at 4:1), drops under the tongue followed by a GFE (grapefood seed extract) chaser. Usually once a day....along with other nutriceuticals, etc.
Oh well, we fight on and I will continue to fight on and trust in God's grace to get me through as I pray that for you guys too.
Thx, Dave
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Eek!]](eek.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic