posted
Hubby recently passed 5 year anniversary of illness -- has been disabled and out of work since 2/13/2001. Mild flu-like illness started around prior Thanksgiving. That fact made me curious ...
1) How long have you been sick? Hubby - 5 years
2) How long have you been in treatment for tickborne illnesses? Hubby - 3 1/2 years -- No diagnosis for 1 1/2 years from 1st 30+ ducks
3) What percent do you feel you have recovered? Hubby says 40% -- he actually surprised me -- I thought it would have been lower -- but the real disappointing fact is that a year ago he would have said 85% -- the quinine/clindamycin rotating with amoxycillin worked great for 2 months for babesia and then it has been pretty much downhill from there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
1) How long have you been sick? Hubby - since August of 2005...but may have had lyme since 2000
2) How long have you been in treatment for tickborne illnesses? December 2005, but March was the first month i did a full month of abx.
3) What percent do you feel you have recovered? Its hard to say....since symptoms were just replaced with new ones.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
2. tick treatment not started until mid-augustof 2001. not st3.may be recovered 40 to 50%,but each day is something different....like cognitivly trying to finish this sentence.
rted until mid-aug of 21.
Posts: 42 | From northern calif. | Registered: Mar 2006
| IP: Logged |
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
1. sick since 2000
2. In good treatment 3 years.
3. some days 100%, most days 95-98%
no abx since 1/2006, pulsing diflican once every 5 days.
Generous vitamin and mineral suppliments to support known defiencies. milk thisle and probiotics
Alkalining low carb, no wheat diet, no caffine, no smoking, a glass of wine daily.
Heat daily, exercise too
Posts: 1572 | From Pa | Registered: Jun 2001
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
1. Bitten four years ago, symptoms began a year afterward.
2. Been in treatment for 10 months.
3. Many days 80% recovered -- all good but for absent short term memory and falling asleep. However, have weird MS-type neuroborreliosis where out of blue, head will begin to hurt and not stop for weeks. During these periods I am walking zombie and can hardly think or follow conversations. Then it will pass and I am all good again till next seige. Go figure.
But hey, it used to be like that ALL the time, so life is good.
:-)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
1. sick since sept 1987
2. treatment since fall 2000 but only spr 2001 w/ llmd
3. still disabled.
still have a long way to go
BUT better than I was.
(I couldn't walk due to pain and fell asleep in the middle of my own sentences due to fatigue)
posted
Probably bitten 1987; but only really sick since 1999.
Abx tx 8 months.
Treatment has made it worse due to herx. However, during good periods, improvement is 20% Still very up and down to even call it improvement.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I've been infected for 19 years. Got really symptomatic a little less than 4 years ago.
In treatment for two years.
Until a couple months ago, I would say 80-85% better. But lowered abx too early and just started flagyl...so today sucks.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
BostonLyme2005
Unregistered
posted
1. Been sick sinse July 2004
2. Had taken Doxy for six weeks, six weeks after being ill...Helped! Got worse....Had Amox for 10 days, Bronchitis...
Had Zith for 10 days, sinus infect...Felt good....Few months later started Amox 1500 per day for 2 + months, stopped for two weeks for Igenex tests....
Continued that for a month, I think, saw LLMD for first time, now almost completed 5 months of killer herxing Tetracycline....
3. I have had 10 days where I have felt good, but all in all I do not think I am making a fast recovery....
I will soon be speaking on the phone and or seeing another LLMD who treats co-infects....
6 years, although may have had a bout back in 1994.
2) How long have you been in treatment for tickborne illnesses?
4 months
3) What percent do you feel you have recovered?
The jury is still out on this, my treatment has just begun. Feeling worse overall.
Posts: 873 | From WA | Registered: Dec 2005
| IP: Logged |
liz28
Unregistered
posted
1. Five and a half years.
2. Depends on how you define "treatment." Started emerging from disability 1 1/2 years ago.
3. I have not had bartonella symptoms in a while.
My babesia is finally responding to a combination of primaquine, mepron, and artemisinin supplements. It is too soon to know if this is a permanent solution. I still can't go off mepron without relapsing.
A week after I started primaquine, a drug which stirs up dormant babesia in the liver, a had a major Lyme relapse, my first in months. However, this time it is not completely disabling, which provides hope that I can stay on maintenance drugs indefinitely (ketek and omnicef) and still pursue a more normal life.
IP: Logged |
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Sick since 1994.
Seeing LLMD since 2000.
Rebitten twice in the last four years.
Now, about 60%. Some days I'm terrific. Others I'm bedridden.
Posts: 1062 | From CA USA | Registered: Jan 2001
| IP: Logged |
2) In treatment since 7 weeks after tick nipped me as I brushed it from behind my ear with finger Had a 6 week break last summer- but symptoms came roaring back
3) Most days feel 85% of my old self...have just come off Levaquin and Bicillin LA injections due to big itchy rash at injection site...so feeling pretty itchy and worn out this week-
Posts: 119 | From new york, NY, USA | Registered: Apr 2005
| IP: Logged |
2) How long have you been in treatment for tickborne illnesses?
Just found out it was Lyme in spring of 2005. Started treatment, but didn't see a LLMD till Feb. 2006.
3) What percent do you feel you have recovered?
I can't tell yet, I'm still very sick. I have had a few really good days, but mostly just really sick yet. Any day that I don't feel like I'm dying is a good day!!
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I have no idea when I contracted Lyme. I do know I was treated wtih 10 days of abx in 1995 for a bullseye rash but feel I was probably sick before that.
My health really started plummeting about 3 years ago. Misdiagnosed by 13 specialists and finally saw a LLMD in June 2005.
Right now, I feel I'm at 60 to 65% recovery. I was dx recently with Bartonella and started a second antibiotic.
I work part time, continue to drive and am rarely ever in bed. I'm hopeful, but I feel like I've got a ways to go.
Andie
[ 02. April 2006, 11:20 PM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
posted
1. Been sick since Feb. 1970; 36 years ago, dx with mononucleosis, the kissing disease leaving me with chronic fatigue, etc.
Misdx for 34 years by 40-50 MDs/specialists!
2. Been on chronic lyme treatment since Aug. 04; 20 MONTHS of treatments.
3. Am I better? 100% worse than when I started with all the abx, diflucan, etc.
In 1999, I was on 2 rx meds.; 1 month ago, up to 19 rx meds! Too many & interacting w/one another.
If I stayed with my beginner LLMD, I would be dead in 1-2 yrs. max. So I'm going out of state this month to someone, LLMD, who works with Dr. B on "difficult" cases!
If she/he can't make me BETTER, then I'll stop all these excess meds and accept my fate having some "quality" time left with my hubby of 31.5 years.
I'm not bedridden like many of you whose stories have tugged at my heart; so thank you God!
IP: Logged |
posted
1) How long have you been sick? 23 years acutely ill, 43 years total.
2) How long have you been in treatment for tickborne illnesses? Going on 2 years.
3) What percent do you feel you have recovered? Felt like I was 90% better 4 months ago. Several recent immune system insults brought my level down to somewhere between 40-50%. Quite difficult to assess percentage, too many variables.
-------------------- Posts: 703 | From Almost Heaven | Registered: Aug 2004
| IP: Logged |
posted
WOW-- the answers are all over board just like I expected. Seems like some recover much more quickly than others and it doesn't seem like it is always the ones who were sick the shortest length of time.
Haven't decided if I should show this to hubby or not. He has had a couple of docs including his LLMD tell him recently that not everyone gets well.
He says his goal is to at least recover to a level of "functional disability" so at least he is being realistic and not expecting 100% recovery.
The most discouraging thing about this thread is seeing how long many of you were sick before you were correctly diagnosed. That really makes me mad at the healthcare system.
Keep up the fight everyone.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
1) How long have you been sick? Red flag symptoms in childhood, camped in teens and got bit but neuro sx started in my early 20's (panic attacks, vertigo). 35-42 sx kept adding up, frequent sinus infections, joint pain, fatigue. Summer of '99 got bit by a bad one and really went downhill. Then I couldn't remember how to turn the shower faucet, intense joint pain, many, many sx. Diagnosed in 2002 and saw awesome LLMD. 9 mo out I could see significant recovery. In the last year (my 4th) of treatment I have had mostly great days. My worst enemy is overdoing but I can still do alot. I work full time and enjoy a social life but DO NOT plan one.
2) How long have you been in treatment for tickborne illnesses? 4 years
3) What percent do you feel you have recovered? 70% some weekends, 100 % others. Mostly depression keeps me down, working on gettint that fixed.
Posts: 982 | From Florida | Registered: Feb 2002
| IP: Logged |
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
1) Was physiologically and mentally affected for years from metal and dental toxicity, but came to to a total collapse from tick bite.
2) It took me about five years to get well.
3) Am totally well and a lot better and healthier than I ever was. That despite the fact that I am many years older than when I got the first root canal in my forties. Elimination of toxic metals and dental infections (root canals and cavitations) made cure of Lyme Disease (and 6 co-infection possible). With a total of 6-8 months abx over a a few years - other therapies did the rest.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Sudden, acute illness in 1993.
Lyme suspected in 1994, but not diagnosed until 2003. In treatment since fall of 2003. Dx Lyme, Bartonella, Ehrlichia, Aspergillosis infection, Hashimoto's thyroiditis, hypothalamus damage, mold toxicity, chemical sensitivity.
About 70% better, with cycles down, especially when exposed to molds or chemicals.
posted
1) tick bite occurred Sept 2003 and first bad symtpoms showed up in Oct.
2) Properly diagnosed (finally!) in May of 2004 and have been under treatment since then.
3) Up and down - mental is about 50% better than my worst. Pain and other physical symptoms havve been really bad this last month - after having had a taste of feeling better. Started to feel like I'm never going to get well.
-------------------- Pam Live well. Laugh often. Love much. Posts: 53 | From Ohio - south/southeast | Registered: Oct 2005
| IP: Logged |
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
1. I've been sick for 20 1/2 years.
2.I've been dx'd with Lyme for almost 3 years now. My tx is herbals and supps. only due to allergy to ABX.
3. I feel worse when herxing for one week each month, but after it's over, have more and more good days....about 15% improvement.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
| IP: Logged |
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
My son has been ill for six years......in treatment for 2 1/2.....absolutely no improvement.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
| IP: Logged |
posted
1. Bit after hurricane Isabelle in Pa. Oct 2003. At the time, didn't know I was bit. Small pink pimple on knee- no tick :disappeared in hours. Asymptomatic. Never outside. Put trash in dumpster, groceries in, walk to car, sit on patio. Worked 2 jobs. inside 99.6% of time. Lived in an apt building. Didn't even own a plant or gardened. Nada.
2. Symptomatic since Feb 26, 2005 In tx since. Living with parents since then.( Woke up 2/26: and could not stand- crawled they thought I had a stroke. Various er visits and two weeks later lyme titers)
3.. No improvement. Neurological , fibromyalgia and pain. Vision loss. Can still wash, dress, eat and do small things. Have to use skooters.Have to use electric shopping carts in stores. Can't drive. Can still see computer. Went from skating, ballet, yoga to full disability. Still hopeful. Start Marshall Protocol soon.
Had the biological warfare tic from Haydes.
Mother just diagnosed with lyme this week. In a tailspin as she is my caregiver.
Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
1-20 yrs, on and off
2-since nov 2004-got much worse after a BAD wrist fracture
3- did abx for 1 yr-for Babesia and Lyme-last 5 months IM Bicillin & ketek----stopped abx Nov 05-started home HBOT & rife and bio-identical hormone implants- then, Xmas 2005 -husband of 32 yrs & 13 yr old daughterleft-so what!- getting better-75% improved- off abx & antifungals- still need sleep meds
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
| 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!
Printer-friendly view of this topic