Topic: How would you describe YOUR first year of treatment?
btmb03
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I need your stories - I need to know out there what people's first year of treatment was...yes, the good, the bad and the ugly.
Don't have to be wordy - any description will do. Mine? Disappointing. Before falling ill I could take any abx (granted that was rare 'cause I was never sick) and really never react to it other than get better.
Now? Waaay different. Either my system is super-sensitive or I don't know what. Can't reach full doses of ANYTHING, when I add even one more drug to the mix my system goes haywire.
Don't know if they're herxes from reactions and LLMD hasn't been helpful in this area.
I don't necessarily want to know success vs failure, just in your own words how you'd describe it...roller coaster? heaven? trying time? any symptoms improve slightly? any worsen?
Please DO share your experiences, it would help all of us and of course PM if you wish.'
posted
Very disappointing to say the least. Agressively treated wit orals and bicillin shots. Nothing helped at all. Now I'll be going to IV.
Posts: 847 | From upstateNY | Registered: Dec 2007
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seekhelp
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OK, but I think my LLMD and other docs are grossly missing a diagnosis. Treatment has been a roller coaster. Many, many bad days. Some kind of better days. Not even close to any 'pre-Lyme days.'
I think LLMDs are obsessed with all problems being Lyme. Non-LLMDs are obsessed with all problems NOT being Lyme. lol. In the end, they don't complement each other and we as patients suffer horribly.
If no orals help, my inclination is Lyme may not be the core issue. Espcially if you've been on combos.
Let's just say BMBT03, I expexted and hoped for much more after 1 yr of Abx. It's very disappointing. I DO NOT want to be on these drugs forever or even 6-12 more months. The mainstream med community looks at me like I have two heads when I tell them I'm on Abx X, Y or Z.
Now, if I would take cymbalta, lyrica, lexapro or more for years, they'd all be happy as pigs in ####.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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btmb03
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I hear 'ya. Though perhaps it's not a diagnosis they're missing but due to the lack of proper research proper treatments is what's missing???
Ketyl - sorry you haven't seen any improvements. Good luck on the IV's.
Seek - Can't recall what your tx has been but maybe if you treated for coinfections things may improve??
I'm not at the year mark yet....keep those updates coming guys!!
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sutherngrl
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My first year I would have to say was very disappointing. I had an expectation of having enough improvement to atually know I had improved. Some days I feel that I have improved slightly; other days I feel just as bad as when I started. I am now 15 months into treatment.
I treated aggressively the first month, then went to moderate doses of mono therapy. I had all kinds of issues with medications. I was told that most herxes last 4 or 5 days, but what I experienced was constant. I never felt bad on antibiotics before this illness came along. So don't know what to make of that.
I feel somewhat better after about 2 weeks of being off antibioitcs, like they actually did help; but within a couple of months I feel awful again. (I took 2 breaks for a couple of months each)
I am now on low dose doxy and I still feel awful.
It seems that if antibiotics were the answer, that there would at least be an ongoing gradual feeling of improvement. However, I am aware that some people don't feel improvement until the 2nd or 3rd year and I guess that is what keeps me going.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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17 months on multiple orals for me so far, a roller coaster, with overall minimal improvement. Same old routine, yesterday was hell, today seems slightly better...I never know what to expect.
Looking to try rife...if that doesn't get me anywhere, will consider IV, sigh. TS
Posts: 566 | From West Coast | Registered: May 2008
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Seek....You hit the nail right on the head. I have been thinking this for 6 mos now. I have so many viruses, Qfever etc. I even think parasites may be part of it.
I have been treated aggressively for over a year, never had a change, never herxed. I know not everyone does, but most do. My LD told me once that I had them baffled.
Oh, you so hit the nail on the head!
Posts: 847 | From upstateNY | Registered: Dec 2007
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btmb03
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Oh I didn't know you meant parasites, viruses, etc...a resounding YES from me in that case. I believe Timaca and others are living proof of that.
Not all our immune systems are equal and I don't think in everyone's case even addressing Lyme + co's is enough.
Someone once said it was like peeling an onion.
TS, sutherngrl, I guess one has to persevere, it is true that some people notice *some* improvement after the first year..thx for your input and hope you guys start to see some changes for the positive!
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TerryK
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he11ish!! Severe herxing. Could hardly stand up, could barely function. Started to feel better after I started drainage remedies.
I did have a lot of improvements in the first year too though. The skin crawling left, burning in my hands and feet improved, lump in throat and swallowing problem got better and I had many other improvements but still felt horrible and less able to function overall.
It is a difficult road especially for those who have a high load of pathogens, multiple infections, multiple genetic issues, are exposed to mold, have heavy metals on board (and who doesn't) etc. etc...
There is no quick fix. One just has to keep uncovering important issues that impede progress and keep on going.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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When I finally knew what I had, I thought we could get some meds and be better. But, I have been sick for 20 years, so I guess I should expect to be better in 8 months.
I hope at the year mark I can say I feel some better..if nothing else, I feel like I am doing something to help myself get better, whereas before it was try this antidepressant, oh, that doesn't work, try this one, and this one
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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seekhelp
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Makes you wonder just how successful all these LLMDs are, doesn't it? Tons of $$$ being paid out-of-pocket for visits - so far, all bad outcomes or minimal successes except TerryK.
it's mind boggling LLMDs at times still NEVER EVER consider maybe their Lyme Dx was incorrect or not the core issue. i guess this is where docs like Dr. K in WA seem to come into play.
Those who say 'oh it can't be viral, it can't be this - Lyme causes it all trust me, etc.' concern me. I wish I knew the ultimate answer. Any LLMD treating patients using this philosophy for 2-4 yrs+ is doing patients an injustice in my mind. There are a handful that say yr 3 or 4 was the turning point, but my gosh after that many years passed, who the hell knows why one improved?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lou4656
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My first year was treatment with abx and supplements. My primary abx was minocycline. Rough by effective treatment, for me. After one year I was on strictly supplements. I was in remission after one year and have stayed symptom free since. (since Jan. 2008)
I did not have co-infections, which I think greatly lessens length of treatment.
My LLMD said that, as a general rule, her patients are in treament for about 18 months.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
I know so many have a hard time initially, but I had the opposite - almost immediate cessation of several symptoms, including fibromyalgia pain, when I started clindamycin 150mg 4x/day.
Then when I herxed a month later, I dropped down to 2/day.
Adding in anti-inflams really helped too - mangosteen juice, noni juice, grape seed extract capsules.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Sorry, this is really long. It's a happy ending so don't despair!!!
Let me summarize the last 9 years:
Year 1
really bad mono, home sick for 3 months, then manage to drag myself in for5-7 hrs a week for 3 -4 months, then home for good.
Year 2 - 5
It's not mono, it's CFS and Fibromyalgia. they start mentioning MS and Lupus in office visits
***This disease and it's co-infections just do not kill you quickly enough - they drag you slowly through the 9 circles of hell...*****
Year 5
My Pennslyvania uncle begs my Ohio Mom and Dad to force me to get a Lyme test. My Dad came to the Texas appointment with me and asked for a re-test. It was positive by CDC standards
1 year of oral zithromax. 6 weeks in- Big improvement. Starts to slip away, 6 months I'm pre-abx. No side effects from the oral Zith.
Year 6
Referred to Dr. B by my local (She said, if you want to see an expert, might as well see The Man)- Massive testing - Bartonella and Babesia positive.
Also allergic to all kinds of foods - comes out as Fibro pain and hives.Lots of other stuff too.
Orals, then IV rocephin, then orals - big improvements after recovering from the IV rocephin
***The Rocephin was awful. It made me so much worse all my symptoms went nuts. I intentionally kept mum about the gall bladder pain because I was afraid he'd take me off of it
.....STUPID - I didn't know about the anti-gall bladder stuff I could have taken...He did of course, but I didn't tell him or my local who had to arrange everything.....
I felt this was my last chance of avoiding assisted living - I was so afraid to give up - took everything I had to keep on it.
8 weeks in my insurance company cut it off saying 4 weeks was the max by current studies. Then they tried to make me reimburse them for the extra 4 weeks I'd managed to "steal" from them. ????!!!!!!!!!
I was so grateful to have an excuse to quit that we didn't appeal or pursue any of the out of pocket options, like we did the second time.
Many full blown gall bladder attacks before and after quiting the IV. Then emergency room Christmas Eve - surgery Christmas Day. So dumb on my part.... sometimes you have to cry uncle and ask for help...
****At this time, if I hadn't had a child I would have called it quits. It was really hard to remind myself that I HAD to stay for her. I'm not proud of this, in fact I'm ashamed, but you might as well know the truth cuz I'm better now and hope for even more....*****
Year 7
Downward spiral with orals so another go at IV - this time a year of Zithromax with Magnesium, Glutathione and Vit C totalling 7 hrs of IV drip per day
**Insurance cut me off after 5 months and cited that 8 weeks was the max. We appealed but had to payed for all IV stuff out of pocket after that - about 8/9 months worth..
**** Followed Dr.B's fabulous PA to one of his new jobs....the guy has 3.... ****
Year 8
go back on Rocephin, keep on the supplemental IV's. Could only stand Rocephin for 7 weeks before begging to get off.
Gall bladder pain - the crystals can form in the duct even though your gall bladder is gone.. Also huge return of worst symptoms.
Bicillin shots for 3 months. Starting to recover from rocephin.
Yeast out of control, do Sprionil instead of Bicillin, slow but consistent upswing. Felt awesome!!!
Went downhill after a few months and went back on orals. Heartbreaking
Year 9
Oral Ceftin 3x a day - more chipping away at the side issues. Ups and downs, but downs much less severe and much shorter. (I guess I'm drawing close to 10 yrs now)
BEST YEAR I've had since 1999 !!! Today I stopped abx for a 3 week intensive 'anti-yeast imbedded in the tissues/organs/everywhere'. Then probably more abx. Wish me luck!!
**** It took 3 full years of aggressive treatment to get here. Ups and downs over and over again. I had cutting edge help from the best experts in the world.... I think so anyway.
I actually took care of my daughter myself this summer for the first time. Was able to take her to swim team every day. I've even started going to the grocery store.... Not cooking or cleaning or anything yet, think I'd like to go see a movie first!
All my best wishes to you!
Posts: 18 | From Houston, Texas | Registered: Aug 2009
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cactus
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My first year of treatment was horrible.
I thought I was sick before treatment - and then wham! - the herxing hit and it was unspeakably bad.
But that first year... I had hope. More than I'd had in a long, long time.
My LLMD compared TBD treatment to peeling layers off of an onion - and she was right on the money.
As we treated, there were times that one infection would go negative, but another one would suddenly crop up and be positive.
It was as if one would be under control and another would move into a more active position to fill the void.
Over that first year, I was diagnosed - through lab testing - with:
Lyme Babesia Microti Babesia WA-1 Erlichiosis Bartonella Colorado Tick Fever (tick borne virus) Chronic Salmonella - 5 different strains Chronic Legionella HHV-6 EBV ..and there were more...
My LLMD said at the outset that we would be looking at a long-term plan. So I was prepared, and my expectations were not sky high that first year.
I pressed for a length of treatment time, for some solid answers, and finally when I asked point-blank, "What do I tell my family? They are starting to think I'm crazy!"... My LLMD suggested that I tell them I'm on a five year plan.
Now, before some of you scream that you can't possibly be on abx for 5 years, that if you were looking at that length of time you would throw in the towel...
I could accept that answer because I had given non-LL docs way more than 5 years to treat me, with the end result that I was unable to walk up the stairs to my own bedroom, and that we were looking into buying a one level, wheelchair-friendly home.
Mainstream docs had had multiple opportunities to throw their very best at me - and believe me, we had spared no expense and left no specialty unturned trying to find answers.
So... while a "5 year plan" sounded unending - it also seemed reasonable to give a Lyme Literate doc that amount of time. After all, I had given more than that to non-LL docs.
I had nothing to lose, and knew it.
That made the he!! of the first year more bearable. That, and my family - I wanted to get well so that I could be a mommy to my infant.
By the end of the first year - there were marked cognitive improvements, and improvements in other areas as well.
I could see that there would be results, but they would take time.
I no longer had to be carried up and down stairs, for one!
Now... I am at my 4 year anniversary. I am functioning at about 85 - 90% on most days, some days more than that.
I still have twice monthly migraines - which seem to be related to an old neck injury.
And I have some other issues - secondary to Lyme - which probably slow me down.
But I've been off of abx since Feb, and feel that overall - Lyme and TBD treatment has given me the opportunity to take back my life.
...A bit long-winded, but hope that gives you some hope!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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p.s. I've been reading here for years - but it's only since I've had such a long improvement that I had the stomach to get on here.(I just couldn't verbalize what was going on - it might make it true)
I have found lots of good advice on here that helped me to keep going with what my doc's were doing.
I love being able to search a specific drug or side effect and getting a huge list of personal experiences - it's really comforting to know that everybody is different and no one seems to have an identical path to anyone else
Dr K is on my mind too for when we finally have finished with all the side issues and my doc says, I got nothing left.... Honestly, I feel like that's never going to end, but I should be squeaky clean when it's all done
:-)
Posts: 18 | From Houston, Texas | Registered: Aug 2009
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btmb03
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Such amazing stories y'all - thank you to each and every one of you. You've all been so brave to post. It really does give us "newbies" a lot of hope esp if we don't see much improvement.
Will read each and every post carefully one more time - many thanks to everyone for sharing and best of health!!
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sutherngrl
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Seekhelp said, after 4 or 5 years who knows why one improved. Well I think about that too. When you read about Chronic Fatigue Syndrome, it talks about a good many people actually get well 5 years after diagnosis.
How do we know that we weren't just going to get well anyway eventually?
Of course I also agree that if you gave 3 or 5 or whatever years to regular docs, then why not give that much time to the Lyme doctor.
All I know if I can't give up and I am willing to treat LD for at least another year.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I've been treating about a year. My symptoms were mild compared to many here. I had air hunger, muscle twitches, and knee and hip pain. I have had headaches for years so that might be Lyme, too.
I did monotherapy until June and had 2 very mild herxes. The abx did help all of my symptoms, though. I didn't feel that I was actually better, but I did feel that my symptoms were being helped.
Now I am doing 2 abx at a time and do feel like I am making more progress. Still no major herxes.
My daughter's first year was a little different. She is mostly housebound and has a constant headache. When she started treating, she felt immediately better, but still not well, but then she relapsed. Different abx have termporarily made her worse, but we stopped them, looking for the ones that would make her feel better. I am beginning to think that was a mistake, because she might have really been herxing.
Posts: 984 | From US | Registered: Dec 2007
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TerryK
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Seek wrote: so far, all bad outcomes or minimal successes except TerryK.
There have been many people who have come before us, have gotten well and are no longer posting. It doesn't happen overnight for most people and some of us have to be here longer for various reasons, some of which I listed.
From what I've seen, those who can get all well within a year typically don't need that much support because with the exception of a few, most are not that sick relatively speaking. Because they don't need much support, they don't post.
To be honest with you, I didn't feel very successful for the first year. I had hopes of getting better quickly but instead I got sicker in some ways. I knew things were improving but I was so ill and even less functional that even though I had improvements it just felt like it was not enough for the trade off of terrible herxes that never ended.
I had many days when I felt like I wanted to give up but of course I couldn't because the alternative was death. I know it sounds dramatic but I was so ill that I'm amazed that I lived through it.
I still get discouraged and wonder if I'll ever have a normal life. Like others, I have hope.
The best thing I did for myself was to keep a daily diary of my symptoms. I rated each symptom with a number from 1-10 so that I could see if I actually was getting better.
I could see that there were fewer days with high numbers for the burning hands, fewer days with high numbers for the lump in the throat/difficulty swallowing etc. etc... It was a gradual process for me. It didn't happen overnight and without the diary, it would have been much harder to recognize improvements.
Sometimes I would *feel* like nothing was happening and it wasn't worth it blah blah blah and my husband would have to remind me that I was improving and then he would tell me that he WOULDN'T LET me give up. That I had no choice.
I still get discouraged but it's easier now because there have been so many changes that I cannot possibly dismiss them as coincidence.
If you are convinced that you have lyme (or mostly convinced), then you must keep at it for awhile because judging by the many people who have gone before us, it can take a long time for many people.
If you aren't convinced that you have lyme, then consider making a list of other possibilities and get a methodical plan in place to check out each possibility. You can do this while you are in treatment for lyme.
It helps so much to be able to make peace with your decision about treating or not treating so that you can focus energy where it is needed.
For those with lyme and with most complex illnesses really, there is so much to learn and so many things that you can do to help yourself get better faster. For the most part, that's where I focus my energy and I find it has helped a great deal.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaS
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You know you have to wonder after five years, are you getting better due to whatever treatment you're doing, or is it that whatever we have has just finally run it's course?
Then again Cactus has a good point when she says, we give mainstream Drs many years to heal us, so why not an LLMD?
seekhelp
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posted
It's just impossible to say. If you've been sick 20+ yrs terribly and get better with Lyme treatment, then I buy into it.
If you've been ill for 6 months and 5 yrs into 'treatment' you feel better...who knows? it's speculation. Some things do pass or lessen over time. This is what the IDSA says too. Kind of makes sense.
It all comes down to what choice do we have, but the problem is we go broke believing this to the bitter end at times and it may not even be accurate? It's so frustrating no matter what. We can't win.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Lymeorsomething
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I think that it is plausible to suspect chronic infection even if treatment seems to be sputtering. The key may be in what some docs call interference. What is interfering with the immune response which prevents it from finally knocking infections out? Some say heavy metals. Some say viruses. Some other bacteria....who knows?
The little improvement I've had came after treating H Pylori recently. So maybe other infections do run interference....maybe it's just a matter of suppressing the right infection (or finding the right infection). You don't always know what's lurking in the body
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Geneal
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Enlightening and painful.
From herxing all the time to learning more and more about
Lyme and co-infections. Learning to incorporate my inabilties
With my capabilities took some time and effort too.
I also began my journey towards surrounding myself with
As much positive energy and letting go of negative energy.
One I am still working on.
I am off everything except diflucan and supplements right now.
Have one more round of doxy/biaxin coming as soon as the
Weather changes and I don't have to be out in the sun.
Maybe.....remission by the end of the year.
I made big steps forward in the first year.
I made big steps backwards.
Learning to persevere through the hard times leaning on
My friends here as well as God and my LLMD
To get me through the fog and into the light.
It does get better.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
This may not be helpful, but I wonder about the answer to this question.....
......IF treatment were free/reasonable and EASILY accessible......
**** "Would any of us care what physical/emotional pain we had to suffer to get well?"
or more truthfully
"Would we suffer for the chance to get well or at least more functional - with no guarantees either way?" ****
I hate to even say the above, because it's living in a fantasy world.
Reality is:
We cost ourselves and our families everything once we get sick - treatment or not.
I'm pretty sure none of us were responsible for what happened to us. I don't remember the tick asking for my consent....
The trick is:
What is the most likely and least costly road to success ? - be it cure, greater function, or just lack of horrible pain -
The answer is:
It's different for everybody. BUT - I think what everyone's road had in common was that they continually looked for new answers.
Lyme & Co sets off so many problems that could be resolved by a Lyme cure, but can also be treated seperately to relieve the symptoms and give the body a better chance to respond to the antibiotics.
You have to attack the whole thing from every possible angle. You have to always research what might work, always ask questions.
When you make a change, you can only change one thing at a time. You have to wait several weeks to see what the effect is. IT TAKES FOREVER
Make sure you don't jump into something without telling your doctor - because there are so many contra-indicated things that we can't possibly know about.
In many cases you are trying to treat 4 separate diseases. But you can't know that until you've tested over and over
All of my blood work on Lyme & Co. has gone positive -then negative -then positive but not active - then fully active and positive again.
It takes years for all these revolutions of the immune cycle to take place. You can never know in advance where you are on the curve at any time
Posts: 18 | From Houston, Texas | Registered: Aug 2009
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btmb03
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Very wise words..from all of you. Unfortunately after so much suffering you all had to endure.
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Lymesomething - ..."Some say heavy metals. Some say viruses. Some other bacteria....who knows?"
That's it. It could be any or all of those things. Fortunately, each side issue usually has a reliable testing method. (When will we have a reliable Lyme test ???)
I've only felt sustained improvment for the last 5 months after 4 years of treatment. Before that it was short highs followed by very long crashes - but enough to give hope that the highs could be reached somehow.
You have to chip away at the whole problem by methodically going through the huge number of possibilities.
Trying to address the bountiful problems at the SAME TIME can sometimes make things worse, or fog up the picture
There are risks: You can't take a myriad of prescribed and over the counter supplements to try and fix all the side issues at one time.
Sometimes one will cancel out the other, or have a horrible reaction to your current meds -- and then you are in a big ole mess.
We're stuck making our own treatment plans and we can never be sure if we're doing the right thing.
It totally and completely sucks - all the way around. AND it takes way too much time...
Let me see if I can remember all the stuff I've done:
SPECT scan: showed Vasculitis/Encephalitis - taking Diamox from now until ???? Big difference
Heavy metals: all in the green, one slightly over, decided not to pursue treatment there
Neurotoxins: Used VCS test - used to be only in one eye, now in both. Did cholestyramine long ago, but quit cuz it gave me terrible tummies. Plan to address in future.
Iron, Vit C, Magnesium, Calcium, Vit B: all way too low. There are all kinds of "take 2 hrs apart" type of things - most have to be a shot or IV ($$$) I don't do the IV stuff now that I don't have a catheter
Tummy Troubles: I don't absorb hardly anything through my stomach, which is a whole huge problem that affects any oral treatment -Take Probiotics, Triphala, just began Florastore and Kolorex used to take Aciphex - need to get back on it - bad GERD stuff
Gene marker: I don't know what this test was, but it's a genetic marker for not flushing out things well. (?????) I take Cerefolin for that - big, big help My down turns are less severe and shorter !!! Doc said last year that 72 out of 80 of his patients tested positive.
Metrix (sp?) Food allergy test: EYE OPENER - Wheat, ALL dairy, almonds, cucumbers (???), soy, 78 reactions out of 100 tested. Diet restrictions - Huge decrease in body pain
Pneumonia (Chlamydia type): back when I was CFIDS - abx, should have clued by how much the abx helped....
Heart: trace leak in heart valve - too scared to follow up, need to do it again(6 years ago, oops)
Thyroid: test showed problems.(up, down? can't remember) Doc put me on diamox for other stuff, we've waited to see if thyroid resolves due to functioning brain - waiting to find out latest thryroid results - possible treatment
Candida: Always an issue. Have taken Diflucan and the other one many times in past, always have to do the diet and probiotics. Did skin test - I was an 8 (0 - 12) normal = 0, fast food junkies = 1, avg lyme patient (abx) = 5-6, He said he has 3 or 4 Lyme patients (out of hundreds) that have tested 9-11. They had amazing results with heavy duty treatment Yesterday stopped abx and started Nizoral plus strict candida diet. I'm really anxious to see how goes...
Stuff I can't live without:
NT Factor Energy - 'Researched Nutrionals' only (take with Vit C and Green tea pills at the same sitting)
Spironil - 'Blessings in a bottle' only
B-12 shots, special kind - need them at least 3 times a week
Ashwaganda and Triphala - Himalayan brand
Now i'm sleepy, will add more as i remember then, there are an enormous number of things to try in addition to antibiotics. **** Some you can't do while taking abx ****
My best wishes to everyone !
Posts: 18 | From Houston, Texas | Registered: Aug 2009
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Geneal
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posted
The good thing about brain fog is that even memories
Of the awful suffering are kind of foggy too.
I remember knowing I was dying to wishing I was dying,
And all the time trying desperately to live. I had small children.
Yes there was suffering.
Thank God that relief from that suffering dulls the memories.
Even if it is just a little.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymeHerx001
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posted
terribe and it left me with permanant damage to my sinuses and vestibular system in the brain.
I wish I was never treated. I am very upset and rely on benzos for relief.
sorry
Posts: 2905 | From New England | Registered: Sep 2004
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btmb03
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posted
lymeherx - so sorry you were left with permanent damage..I'm assuming you meant from the abx.
Geneal, 3lymiesintexas, lymeorsomething, Lisa, Terry (sorry if I've left anybody out) I have that "dying" feeling 24/7 and sometimes want to give up and let "nature takes it course".
BUT there is some fight left in me. Your stories hit so close to home it's hard to read them. You know *exactly* how I'm feeling.
But at the same time there IS no turning back and I *have* had the occasional "good" moment. Only wish they would turn into hours, days, weeks, months.
In the meantime I have even forgotten what "living" means. Getting thru each day is the goal and finding some meaning for what we're going through is key. It IS a journey...a very long one.
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