lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I'm about 95% or more. I've been sick for about 2 1/2 years. I couldn't use ABX. So I saw a lyme literate dentist/physician November of last year and he can prescribe ABX. He uses ART and I don't test very well for ABX. So I started using MMS and seeing this wonderful dentist. If I didn't see this dentist, I'm sure I'd be disabled right now.
After having amalgams out and cavitations treated ending in July. I decided to get a lightworks LED. And continued to improve. Then I got a biotensor and I have to say the combination of lightworks and biotensor are a powerful combination.
I do my own energetic testing with a biotensor and according to my testing I'm lyme free.
The only supplement I'm taking now of any significance is fish oil. No probiotics! No multivitamins! nothing but diet and herbal teas.
My next step is to get to remission. By the way the approach I took, took about 1 year. If I hadn't had the dental issues it would have been much quicker.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Slowly but surely. I'm going into my 4th year of treatment on oral abx. Started with Biaxin, Doxy and Plaquenil. I have also done Tetracycline. Currently I'm on the Biaxin and Plaquenil and will add the Tetra to it, which is something I've not done before.
I also go to PT weekly which helps immensely.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Been in treatment 7 months; just started to notice slight improvement in the 6th month after treating for Babesia. I feel about 20 to 30% better. I am having a flare up of pain since being off antibiotics for almost 3 months, so will probably have to go back on antibioitics. But overall there is some slight improvement in 7 months of treatment. I was ill for 2 years before starting treatment.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
well, I've been sick for about 3 years (onset of symptoms was slow for me). Took me about 18 months to get a diagnosis and I've been treating since.
Prior to my diagnosis my symptoms were very cyclical...somedays felt normal and others I felt like I had the flu and was functioning at about 25%. Started treatment and hit rock bottom. Hospitalized and couldn't function. First few months of treatment were not tolerable but I somehow pushed through.
Today my symptoms are less cyclical. Good days aren't as good as pre-treatment BUT bad days aren't nearly as bad as before. Most of my symptoms are gone except for NAUSEA which is with me 24/7 (has been my worst symptom since day 1). Overall I am so much better than I was a year ago and I probably routinely funtion at about 80%.
I've taken a variety of meds in different combos:
Doxy Minocycline Biaxin/plaquenil Mepron Ceftin Zithromax IV Rocephin Rifampin
It is likely that the nausea that still remains for me is not a symptom of an active infection anymore so I continue to pursue other answers besides lyme and Co.
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I came down with migratory joint pain in 8/05. Two doctors diagnosed lyme and I began treatment. 5 mths later I was housebound with inflammation in every joint.
When I was diagnosed with rheum. arthritis, I found many possible causes among them bacteria, leaky gut, heavy metal toxicity. I found a doctor to work with me from this angle and he saved my life.
Changing my diet was the first major improvement and that alone allowed me to return to work. After one year with this doctor, the rheumatologist declared me nearly dormant. That was a happy day. 04/07.
In 6/07, I began working with a rheumatologist who believes in infectious causes. She is a member of ILADS, is LLMD and practices CAM therapies as well as traditional medicine.
Today I live painfree. Dr feels confident we are putting my RA into remission. Her tests found me positive for babesia, mycoplasmas, CPN, EBV & H.Pylori. We continue to attack these to this day.
However, just as important was a gene test that revealed my very poor ability to manufacture glutathione. Glutathione is vital to our bodies as it is the master detoxifier. Chronically ill people are notoriously low in glutathione and the build up of toxins creates many of our symptoms.
I will take artificial forms of glut the rest of my life. Eating cruciferous vegetables is a great booster of my natural production of glutathione. See this article. Very important.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
posted
It does get better but it's a different experience from recovering from the flu or a cold in that the recovery is glacial and barely noticeable day to day. It's probably better to measure progress in quarters or 6 month periods. Some people use the analogy that it's like peeling away layers of an onion. It takes that long as the bb bacteria has one of the slowest replication times in nature, not to mention the coinfections adding to the mix.
My wife was on abx from Aug 2007 to Jan 2008 (she was CDC positive), since then only herbs. She's mostly 100% back to normal, with some cyclic fatigue around her monthly period. She's strong enough and is traveling abroad right now.
Posts: 655 | From USA | Registered: Sep 2007
| IP: Logged |
My body is hurting me so much now. I would like to try another approach...but where do you begin.
On flagyl 1500mg per day.
This Xmas is not going to be a happy one.
It could be worse. Atheana Posts: 196 | From from a far | Registered: Jan 2008
| IP: Logged |
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Think I'm close to 98% symptom free, Yay!!!
I contracted lyme last fall and started symptoms in January of 08.
Labcorp test CDC positive IGM bands #23 & #41. CD 57 a 45.
Started treatment May 08. One month doxy, one month biaxin, 4 months zith, and currently on rifampin and cat's claw, 1.5 months.
My supplements seemed to have also helped me a great deal. They are lots of refrigerated probiotics, oregamax, olive leaf, grapefruit seed, ag immune booster, virastop, bromelain, magnesium, super b complex and a rainbow lite womens one vitamin.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am not sure how long I was sick prior to diagnosis.
At least 5+ years.
Two years and two months of all orals,
I am getting better.
My speech is the best it has been in over two years.
This is big for me as I am a Speech Pathologist.
I've treated Lyme, babesia and bartonella.
I still have a ways to go, but am clearly able to think clearer,
Speak well (almost normal), memory is getting better, joint pain diminished, etc.
Hang in there. As Lymetoo has said many, many times,
It isn't a sprint, it is a marathon.
Pace yourself.
Try to keep your goals small and reachable.
Not huge goals, just small ones.
Getting through Walmart without panicking or feeling like I was
Going to pass out was one I made for myself.
I do that without a problem most days.
Keep the faith and your spirit up.
Wait!
That is what we are here for.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
I'm feeling ALOT better.....almost normal. Started treatment in April of this year.
Currently on Minocycline and Rifampin
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I am currently going through a rough time herxing, but in general, I am getting better. I was sick sick sick.....still am, but I know I am improving because some symptoms that I didn't think they would ever go away are getting better.
The derealization and cognitive impairment CAN get better from antibiotics for some, but it can take lots of patience and perseverence. I had to strike out many times before finding things that worked. These symptoms are getting better though.
It can happen! Yes, it can!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
I am a Dreamer, Believer, and Conquer; I will overcome this disease !!! Posts: 382 | From Alabama Via PA | Registered: Jun 2008
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Currently going through a babs herx from agressive babs treatment (agressive for me at least; mepron, zith & art), so have been very tired this week.
Otherwise, my health has improved greatly from the usual mix of beta-lactams, macrolides, plaquenil, and mepron, along with a healthy diet, exercise and rest, and no alcohol.
Treatment for TBD's takes patience and perseverence. The gain in health: priceless.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I'm doing a lot better from where I started.
I was very ill. I'm having a lot of good days now. I still have bad days and I'm still herxing hard on Mepron and abx (though I have seen the biggest strides made with Mepron. Rifampin coming in second), but altogether I'd say I'm usually at 55% - 90% depending on the day. My good days are sometimes almost completely normal, except for a few twitches here and there and a few other minor symptoms.
My bad days can be really difficult unfortunately, but that's usually due to herxing.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
posted
On good days I feel normal, and bad days I feel about 65% normal...and on horrible days...I feel like death warmed over.
Ive taken doxy (2 mos), then onto tindamax, biaxin, omnicef...now just biaxin low dose and a ton of supplements... but that could change as the past month has been worse for me. Luckily I see my LLMD again in January...
The problem is that I get spoiled by feeling normal and when I have a bad day, it ****es me off and feel miserable, jealous, and envious of the rest of the world who are all going about their lives without a care in the world like what we endure.
Living in pain is no way to live...but we have no choice... keep the faith...keep pushing on...
A xmas wish...that all past, present and future lymies will be cured...and that all ticks will be evaporated from the planet....
Posts: 514 | From . | Registered: Apr 2008
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I originally was diagnosed with remitting/relapsing CFS. October 07 had an Igenex Lab test and saw an LLMD in MO. I've been on abx since then. At my worst was functioning 15% and felt like I was dying.
Currently, I'm 85%+ and returned to work in August after a two year medical leave.
I coultn't tolerate very many abx. It was trial and error. Progress was up and down. Methylcobalamin B12 shots twice weekly, and 1/2 of Armour pill helped with energy.
I take 1/4 Flagyl twice a week along with nystatin daily.
I pray that I stay in remission.
CherylSue
Update: Had a relapse with stomach virus and cold after Christmas 2008. Stay tuned.
[ 06. January 2009, 07:31 PM: Message edited by: CherylSue ]
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
posted
I have been searching past posts regarding rife and feel encouraged when I read the number of members who have stated they were getting better after four months of rife. Often the posts I have read indicate they are using a doug coil machine or a GB 4000.
posted
Hi! I was sick as heck for 18mths. Have been on minocycline for about 40 days. Feel back to normal. Some joint and back pain, otherwise doing GREAT! Meds: 200mg minoclycline, 60mg cymbalta, 80mg lovenox injection, 1mg valium, 1/2 atelonol pill (for fast heart rate). I never thought I would beat this and was so devasted about how my life had changed. Last night I was out with friends and had several glasses of merlot. I was unable to tolerate alcohol for over a year. My Dr. does not know if I had Lyme or a cousin to Lyme. But the good news is it responded very well to minocycline. Will be on minocycline till summer. If you get the right abx you will absolutely get well. No doubt about it. Don't let anyone tell you otherwise! =)
Posts: 63 | From Clarkston, MI | Registered: Sep 2008
| IP: Logged |
posted
I forgot to add my tests were igm band 41 positive and cd 57 was 14. (8-08) Also, unfortuntely the people who are totally cured just don't ever want to think about the hell of lyme disease again and when you are better you almost don't want to go on this site bc you were so traumatized by the terrible symptoms. I am better 99%, and I am 36. So, stick with it. My fisrt 10 days on minocycline was very very bad herx wise. But I pushed through bc I thought either it will kill me or I will get better. Stick with it and push through. Merry Christmas!
Posts: 63 | From Clarkston, MI | Registered: Sep 2008
| IP: Logged |
Tried homeopathy, chinese herbs, american herbs, etc. first. Got some, but not measurable results. I must say that the homeopathy saved me from really crashing, though.
Diagnosed June 2005. ABX started Nov. 2005 for 9.5 months. Then relapse Feb. 2007. Been on ABX ever since and feeling about 85%.
Just had all amalgams removed and have a wonderful dentist that I also hope will help me in the transition off antibiotics (which I will start in january).
Lyme and Bartonella
First round of ABX: Levaquin, then Biaxin/Rifampin, then Zith, flagy and Bicillin LA
Second round: Biaxin, Malarone, then 5 months Rocephin, then Zith, Flagy, Bicillin LA, then Zith, Bactrim DS and Bicillin LA.
Life is good. Horseback riding 3-4 times a week, pilates, gym workouts, still working, etc.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
any more responses?
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Wish I could say I was. I'm stuck in neutral here. However, I'm not on a very aggressive protocol. One positive is that I'm not getting much worse. Fatigue is the central issue along with indecipherable endocrine issues...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
posted
It's nice to see all the replies, especially today since I am having a bad day!
Posts: 146 | From California | Registered: May 2008
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I'm better....almost 2 years into treatment. It's been really rough.
Somedays it doesn't feel like it, as I've kept a journal and it seems like the "new or worse" is almost equal to the "improved or gone". But I haven't treated babesia yet and I know that holds a lot of folks back from getting well. I treated Lyme and bart, had really bad bart/BLO.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
2 of us in this household were bedridden and now in semi permanent remission...a tune up now and then is required but it's manageable.
NO attention to diet or forces from out of the ether. A few supps...mg and milk thistle mainly.
Just orals but admittedly you have to have a cast iron stomach to do what we did.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
| IP: Logged |
posted
Month 21 of up hill battle, 95% to the good range.
Was headed for a total down fall before treatment.
At one time putting 25 pills and supp. in my system.
At present taking 100 mg. of Minocycline twice aday and will do so for along length of time as I have started my out door actities, this is per LLMD protocal in my case.
10 bands positive Low CD57 Low B12 Low Vit. D Hydroxy C6 Peptide B. Burgdorferi high 11.52 Low WBC 2.1 Outdoor actitives in epidemedic areas with LYME No rash Unaware of tick attachment
When LLMD said we have hit the jack pot when 1st test came back, I knew so Little about LYME!
Posts: 108 | From maryland | Registered: Sep 2007
| 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!
![[Smile]](smile.gif)
![[Frown]](frown.gif)
![[Cool]](cool.gif)
![[Eek!]](eek.gif)
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic