Topic: Quick Survey: How long before Dx, How long have you been / did you treat? Results?
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi folks:
I was just curious as to other's stories with their struggle with Lyme. Specifically:
1) How long were you ill with symptoms before getting a proper lyme diagnosis?
2) How many Dr's did you go to before getting properly diagnosed?
3) How long did you treat / have you been treating?
4) How are you doing today versus when you were diagnosed (better, worse, etc. %?)
5) If cured / in remission...how long have you been "normal" and off meds?
Here are my answers:
1) 4-6 months. I crashed in Feb 2010, but looking back my GI symptoms really started in November 2009. I had other, mild, non-specific symptoms throughout 2009.
2)5 Doctors, 3 Chiropractors, 2 Psychiatrists.
3)I'm in my 15th week of treatment (started on May 10, 2010)
4)MUCH IMPROVED! 95-99% most days (started at <50%). I never thought I would feel like "myself" again. All of my cognitive issues, brain fog, fatigue, GI issues, anxiety, depression, and dizziness are gone. I still have mild tinnitus, mild eye floaters, mild calf muscle twitching, mild stuffy ears, and mild sweating.
5)Can't answer...still in treatment. Going after Bart next. Hope to be done by Christmas.
Keep the faith!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
1) How long were you ill with symptoms before getting a proper lyme diagnosis?
I had Lyme for over 30 years, but it came and went. I got bitten again and was bedridden by the time I got diagnosed three years later.
2) How many Dr's did you go to before getting properly diagnosed?
N/A didn't trust doctors so didn't go. I had too many stupid answers from them throughout the years, like my CFS symptoms were from drinking too much in college. My ob/gyn thought I was a hypochondriac even though I never asked for medicine, only what was wrong.
I did get a doctor to test me for asthma because of my air hunger. I also had a GI doc test me for celiac disease.
I went to another doctor, convinced her to do an IGeneX test. Eight bands positive, she diagnosed Somatization Disorder, so I went to an LLMD.
3) How long did you treat / have you been treating?
Treated about 3 years
4) How are you doing today versus when you were diagnosed (better, worse, etc. %?)
Started out at 15%, now am 100%
5) If cured / in remission...how long have you been "normal" and off meds?
I have been off medication since Sept. 2008 when I went to Germany for an alternative treatment. I have been completely well since August 2009, so one year.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
1. Exposed May 8. Symptoms for 6 weeks before seeing LLMD.
2. Two docs before clinical diagnosis.
3. Treatment from July 7, 2010 to present.
4. Am now 70% improved but elbow/arm pain worse.
5. Still on medication & increasing gradually until symptoms gone.
I expect a full recovery. We have not pinpointed any coinfections but my elbows/tendonitis symptoms are so much worse & I never had it before being exposed.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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onbam
Unregistered
posted
1--5 months. Neuro symptoms started 1 week after bite. 2--5. All told me it was "all in my head." Diagnosed with CD-57 of 20 and IGenex IgM positive. 3--On and off for 3 years. 4--Progress has been minimal in most respects, and not sure now if changes in symptom severity in the past were actually correlated with treatment variables. generally about 80-90%, though currently getting worse on herbs.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Ill for 2 years before diagnosis.
Been treating for 2 years and 3 months.
Started feeling somewhat better the last 4 or 5 months.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
up
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
1. Sick about 3 years total prior to dx. Symptoms all neurological.
2. Saw about 6-7 different docs.
3. Treating since dx, March 2008, still treating.
4. Maybe 40% or so. Still VERY symptomatic, at lowest point was 5%. On IM Bicillin now for apprx. 4 months. My hunch is PICC line is in my near future due to slow, minimal progress.
Posts: 566 | From West Coast | Registered: May 2008
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2. saw primary doctor (rulled out lymes with elisa test), cardiologist , rhuematologist , several ER visits. Catscans , MRI's multiple chest x-rays . Naturalpathic physician (ordered western blot cam back positive for lymes) went to see LLDO (getting treatment)
3. treating 10 days.
4. too early to tell noticing some herx going on so I am optimistic
5. in treatment
Posts: 925 | From Connecticut | Registered: Aug 2010
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started treating April 1, 2010( 4 months after bite)
Still treating...much better. Neuro symptoms still flare when herxing, but better than before ABX. 75% improvement
Still a long way to go. Making progress slowly.
Posts: 747 | From Utah | Registered: Apr 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Bitten by wood tick late May 2006. EM rash and very sick.
First visit to doctor June 2006 - found nothing wrong. Five more doctors visits.
Diagnosed myself while researching chronic fatigue Feb 2008. Told GP what to give me. Started doxy, then ketek
Diagnosed by LLMD with bartonella Feb 2009 Used Levaquin, amoxi, rifampin, bactrim DS, biaxin, zithro, tindamax, nystantin, amantadine, HH-2, samento, quina, cat's claw, grapefruit seed extract, clove bud oil, resveratrol, and the list goes on
Still treating. Sometimes I am 95%, then I backslide. Presently boing downhill again. Fall winter is always bad. I am not as sick as many people and grateful for that but getting well seems hopeless.
-------------------- 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
1) How long were you ill with symptoms before getting a proper lyme diagnosis?
6 months
2) How many Dr's did you go to before getting properly diagnosed?
Well over 10. 5 ER docs, my PCP, an endochronologist, 2 neurologists and 4 cardiologists, plus more I can't remember.
3) How long did you treat / have you been treating?
I have been treating for almost 5 months.
4) How are you doing today versus when you were diagnosed (better, worse, etc. %?)
Interesting question. I had some severe symptoms right from the get-go...cardiac (even coded in the ER once ), complete autonomic nervous system dysfunction, breathing probs, Parkinsonian-type of tremor and about 30 other symptoms. The severe, life-threatening symptoms seemed to have mostly subsided on their own, even before the start of antibiotics in April. I am still left with many, though, mostly neuro/cognitive now...I have felt drugged/drunk/brain fog for 7 months straight now...with no relief.
So...when I started, I was probably at 5% functionality. Now, I am at about 15%...still unable to drive, work, etc.
5) If cured / in remission...how long have you been "normal" and off meds?
Not cured or in remission yet...not even close...but would LOVE to be! Still on meds...probably getting PICC line next week...
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Up ^
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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2) So SO sooo many. At least 6 GI docs, a rheum, 2 hematologists, an endocrinologist, 3 PCPs, alternative docs of all kinds, 3 GYNs, 2 integrative med docs etc etc.. can't even remember most of them.
Neurologist diagnosed me with + Elisa and + IGM in 4/10.
Been treating since late April, 2010
Unfortunately I am the exact same as when I started treatment. I have flare ups when things are at a 15% and days where I am up to about 40%. It was like this prior to treatment though
I hope one day I can answer the question about being cured.
Posts: 341 | From NY/FL | Registered: Apr 2010
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
1) How long were you ill with symptoms before getting a proper lyme diagnosis?
7 1/2 years
2) How many Dr's did you go to before getting properly diagnosed?
at least a dozen - too many
3) How long did you treat / have you been treating?
been treating with abx and other stuff for 3 years
4) How are you doing today versus when you were diagnosed (better, worse, etc. %?)
Much better. Was on disabilty (dying) for 2 years, and have been working 2 years now while on on treatment. Healing was a long process of relapses and gains. Never thought I'd return to work again.
5) If cured / in remission...how long have you been "normal" and off meds?
Not quite there yet... maybe 93%....still working on physical stamina. Pretty much a normal life, otherwise.
Posts: 1954 | From Illinois | Registered: Aug 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I was just curious as to other's stories with their struggle with Lyme. Specifically:
1) How long were you ill with symptoms before getting a proper lyme diagnosis?
Never have had an official diagnosis, or official treament.
2) How many Dr's did you go to before getting properly diagnosed?
Gave up after two said no Lyme here.
3) How long did you treat / have you been treating?
5+ years.
4) How are you doing today versus when you were diagnosed (better, worse, etc. %?)
Far better. Close to normal, normal most of the time.
5) If cured / in remission...how long have you been "normal" and off meds?
Never had any meds, other than natural antibiotics early on.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
1) How long were you ill with symptoms before getting a proper lyme diagnosis? Not sure how long I was ill. Had CFS for 10 years, and don't know what came first CFS or lyme. Got arthritic symptoms 12/08. At least two years, maybe ten or more years sick.
2) How many Dr's did you go to before getting properly diagnosed? At least 7
3) How long did you treat / have you been treating? Been treating a year, end of this month
4) How are you doing today versus when you were diagnosed (better, worse, etc. %?) Much better, 60%-70% better, although it fluxuates
5) If cured / in remission...how long have you been "normal" and off meds?
Posts: 964 | From san diego | Registered: Oct 2009
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![[Frown]](frown.gif)
), complete autonomic nervous system dysfunction, breathing probs, Parkinsonian-type of tremor and about 30 other symptoms. The severe, life-threatening symptoms seemed to have mostly subsided on their own, even before the start of antibiotics in April. I am still left with many, though, mostly neuro/cognitive now...I have felt drugged/drunk/brain fog for 7 months straight now...with no relief. ![[Smile]](smile.gif)
Still on meds...probably getting PICC line next week...
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