I am wondering how many here felt BETTER before they started treating their lyme. By better I do not mean "great, fabulous", I mean "not as bad".
Did you start feeling worse after treatments started - and after a number of months/years on treatment - do you feel better or worse?
I ask, because I know a number of people personally who seem to be doing so much worse after all the various treatments they have had. It makes you wonder if it's the natural disease progression or if the treatments they endure are not helping or even making it worse.
Just curious.
Posts: 89 | From Mid-Atlantic State | Registered: Jan 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I feel better. I can speak and eat and drink now without choking.
I now get maybe 2 serious bad bad bad headaches a week, whereas before I had one long never ending one. (encephalitis).
I don't get lost anymore, and haven't found myself with no shoes on, driving to work lately
Also, the constant twitching has stopped. I twitch only on flare week now
The things that have not improved is fatigue and bone pain. Those two have stayed the same level of awful.
How do you feel since treatment, Woodstock?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Kudzuslipper
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Member # 31915
posted
Woodstock, Both! I felt a worse for a long while on treatment, but then I would have a few days where I felt like I remembered feeling 25 years ago. the good days didn't last... but over 18 months of treatment I had more good days than bad. But for me treatment immediately took care of some scary things like word swapping which started to happen only a few month before I was finally dx'd.
I have been off of abx for as long as i was on now. I am not 100% but don't feel like I want to go back on. And, I never officially finished my treatment... I ended abruptly due to my gut giving out... and never found my way back.
on treatment, my muscle pain (fibromyalgia) went away but my joint pain got worse. my headaches were better. but my moods were all over the place.
off treatment... the first month was tough, it was as if my body was learning how to operate without a crutch. but I can say now I feel better than I did before treatment. But it is a chronic illness that will need life long management. STUPID TICK!
Posts: 1728 | From USA | Registered: May 2011
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posted
For me, some things have improved a lot since treatment, and others not much.
I had severe migraines - 20 a month, before being diagnosed, and those have improved greatly with treatment. I only get about 3 a month now.
I had severe pain in my face and jaw and before my diagnosis I could only eat pureed food and liquids for 8 months.
I still have facial and jaw pain, but since treatment it is about 60% better and I can now chew real food.
Treatment has made no difference to my tendonitis, joint pain or muscle pain - I would say that is worse than pre-treatment levels.
But I have not treated Babesia adequately, nor Bartonella due to problems tolerating the antibiotics, so I am hoping that in time, I will still continue to see some improvement once I have treated both those infections for long enough.
I am also still having significant issues with word retrieval and fatigue is still a big problem for me.
Posts: 187 | From Connecticut | Registered: Jun 2013
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Worse. I have way more symptoms now than i did when I started. It seems like the infections just went nuts and spread.
I never herxed and got better like you are supposed to....just flared or herxed...and that stayed.
I wish I had never started abx treatment at all, and really explored alternative treatments. This doesn't make scientific sense at all.
Posts: 3528 | From US | Registered: Apr 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Better. I am better.
During treatment had some dark days.
But very glad I treated to the best of my ability.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Lymedin2010
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Member # 34322
posted
Collectively way worst with continued ABX usage, I could not tell it was Lyme before starting.
BUT the most debilitating thing & for which I would have had to shoot myself for is gone. It was extreme head pain/pressure, that I could not even walk. So painful & not worth living like that.
Posts: 2087 | From NY | Registered: Oct 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Much better. I can walk, talk, drive a bit and think now. Nothing is like when I was fully healthy but definitely improvement.
I don't feel like I'm being thrown around on a carnival ride that I can't get off of now. After experiencing that sensation 24/7 for a couple months, I'm so happy that's gone.
Posts: 2839 | From California | Registered: Jul 2012
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posted
My son and I are completely better and off meds for Lyme or any other tick-borne illness.
My daughter is back on antibiotics because her knee arthritis returned. She has a different doctor.. in Massachusetts. My son and I went to a doctor in Virginia.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
worse
Posts: 922 | From Philadelphia | Registered: Sep 2012
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
I felt much worse during treatment as herxing was awful for me! But after the smoke cleared I am almost symptom free but have lingering issues. I have been off antibiotics for a year and haven't seen a LLMD in this time since my previous one was not helping anymore. Also, I think yeast issues from the antibiotics were part of why I felt so bad. Flagyl was the worst for giving me long term yeast issues.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
A different kind of better. Improvement with the co infections, but lyme is still there (got bit again). I wish that I had never done abx though (ruined my gut). The alternative stuff helps me more than anything.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Sorry for the long delay, work was pretty busy this week and I spent the day y'day visiting friends in their new home.
Greta, that sounds horrible - even the "better". Dang.
Kudzu, this is the kind of stuff that makes me wonder if some of these treatments aren't as bad as the disease itself. I'm sorry.
Oceangirl, I'm sorry. Was this all from one tick bite - or several reinfections?
CD, what kind of alternate treatments? Does your doc think the antibiotics opened Pandora's box? This is kind of where I was going with this - I wonder if part of the key is really working on the immune system rather than all the meds. This doc wants me to do a colon cleanse AND a liver cleanse. Is that really a good idea?
Surprise, very glad to hear that. How long was your journey? Do you mind telling me where your doc is located?
Lymed, Mary and Judie, glad you are doing better.
Birdie and VV, I'm sorry. Are you still being treated?
Jamers, glad the symptoms are mostly gone, at least.
Catgirl, ouch, I'm sorry you got bit again. That scares the cr*p out of me, the thought that this could happen again - and possibly worse the next time.
For my part - I was bitten once, about 25 yrs ago (and I'm fairly certain not since then - esp because I am so very paranoid about ticks I do whatever it takes to avoid putting myself into a sitch where I'd come near one - to the extent that my friends probably think I am weird). It was undiagnosed for 15 of those years (at least) and then finally someone put two and two together. My symptoms were primarily knee pain and swelling - and I mean like a grapefruit. I was young and didn't let it slow me down - still hiked, biked, ran - but always had an ace bandage on and took lots of advil or tylenol. No other pains and no brain fog, etc.
At that time, I responded to the meds (real meds) very well, didn't herx (but my stomach hated antibiotics) and it didn't take long before the swelling went down markedly and 20 months later my doc said I could stop treatment. All covered by insurance.
I did great for a long time and last summer the same doc (who, if you're following any of my other posts) said that my babs was back.
The doc seems to have changed markedly and to put it mildly I don't trust this doc now. I think the doc is drumming up some of my "issues" and the meds being RXd are scary (and I didn't fill the Rifaximin or Yodoxin). My two complaints, last summer were: insomnia and mild shoulder pain that was intermittent.
Well, it turned out that stopping Singulair, as I did a few weeks ago, finally got rid of the insomnia (for the most part - if I have wine at dinner, I don't sleep as well - but if I avoid wine I sleep like a champ). The shoulder issue resolved when I changed my ergonomics at work. Meanwhile the doc has had me through the wringer of very expensive tests, all of which showed I was fine... and in fact one of the ones that showed I was fine the doc tried to bury during my appt - didn't want to show it to me and I had to really press for it.
and this last round of tests, the ones where I was told I was a ticking time bomb - I've now gotten two other opinions (and am working on a 4th opinion) have pointed to "these things are found in many people's colons, don't worry about it".
Posts: 89 | From Mid-Atlantic State | Registered: Jan 2014
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
The wine keeping you awake is probably a CBS mutation - typical response.
I am much better. I have treated 7 infections, unless the bartonella I have now is not a new infections - then just 6! I often wonder if the people who do not progress are not treating the right infection. As I got one disease under control, another one would erupt and my symptoms would shift.
These are some of the symptoms I do not have any more ; dizziness so severe I walked like a drunk and could only sleep on one side; body aching, stabbing joint pain , cramps so bad they made me scream and felt like they ripped my tendons;
fatigue so horrible I could only walk a short distance before having to rest; twitching; burning pain on shins that left lumps along the bone; memory loss so severe I could forget where I was and even forgot my son's name once;
bladder irritation and pain; insomnia for days, weeks, months until I was like the walking dead; anxiety, depression, irritation/rage.; hot flashes like I walked into an oven followed by sweating.
I still have dry irritated eyes and frequent headaches. My feet hurt a little in the morning. Bart is still there and I am fighting it. I have to be on some abx, but i just can't tolerate a normal dose. I hope the little bit I am taking will work.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
My God, Neffer, I'm so sorry. Do you have someone at home to take care of you?
Posts: 89 | From Mid-Atlantic State | Registered: Jan 2014
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To answer your question, my symptoms are not all from one tick bite.
I was bitten many, many times and one of those ticks did test positive for Lyme.
I even had a deer fall on my head when it jumped on my car, crashed through the sun roof and fell on my head, so I don't know how many times I was bitten in that accident alone!
My doctor refused to give me antibiotics for any tick bites I ever had over a period of about 12 years at least, so the infections got a good hold in my body.
I knew nothing about Lyme until I got sick a few years ago so unfortunately I did not know to try and seek help elsewhere. My doctor just kept telling me I was stressed and depressed!
I think my bacterial load is very high and unfortunately I am intolerant of many antibiotics so I am not sure if its possible to get totally well at this point.
I also tested positive for a number of other infections as well, including Cpn amongst others, so my immune system is very burdened.
I am not a good case to compare treatment results with!
Posts: 187 | From Connecticut | Registered: Jun 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Woodstock, the 2 LLMD's my young daughter and I treated with are in CA. Too far for you.
I didn't find out I had Lyme and Bart until I was 42. No idea how or when obtained, no memory of a tick, ever. Don't think I'd recognize one if it was in front of me crawling across the floor. Did feed and try to tame wild feral cats 17 years ago, bit and scratched- could be that. But I always loved hiking and outdoors before, too.
At our initial 1st Lyme appt. for my daughter, we realized it was congenital, then I tested, and started treatment too. She had already been in PANDAS treatment and biomedical treatment 3 years before that- finding Lyme blew my socks off.
Too many more details to write. But I treated very hard with multiple antibiotic combo's for 18 months, herbs and tinctures throughout, lots of detox, and after with herbs, and a very long and ongoing parasite, yeast, gut health.
I don't have a line drawn in the sand in my life from 'totally healthy' to 'bedridden' I lived with symptoms for decades, waxing and waning, but progression was occurring, especially after my last subsequent pregnancy.
Now, my memory is much improved, sharper thinking is back (I secretly thought I was headed into Alzheimer's for sure) I am calmer, more peaceful, my daily headaches and ibuprofen I ate like candy is diminished.
Instead of taking care of everyone else, I take care of me now, too. Exercise, what I'm eating, learning to say no to situations I don't want to be involved in.
Things and my lifestyle are different. I lead a quiet life for the most part. I don't bring drama into it, my marriage is good. I do what I need to do, and rest when my body calls for it.
Need some ongoing supplements, I still take a sleeping pill. Some days I may not feel 'great', but again, I am still working on cleaning up my GI tract. That's a golden ticket, but an onion, and it takes awhile.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I feel way better. BUT.... sometimes I think "is this just a lull?" I am working on gathering faith in drs again.
my llmd keeps telling me I WILL get better and stay better.
I want to believe him....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Woodstock - those were the symptoms I USED TO HAVE. I am much better now, but thanks for asking if someone could take care of me. My husband did a wonderful job.
The symptoms I have left are pretty minor but I am still working on them - headaches, some brain fog, dry irritated eyes, and other indications of bart like hot flashes at night.
But I am sleeping so much better - that is a God Send. I slept 9 hours last night.
Oceangirl, that sounds like a horrible accident. Terrible nightmare. I hope you get better quickly.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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