Topic: Has anyone's treatment been straightforward?
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Has anyone's treatment been pretty straightforward as in, herx--get better--herx--get better--herx--get better....quit or transition to herbals?
Or, has it been a series of stops and starts, treating this or that co-infection alone, or Lyme all the way until a positive co-infection test showed up?
Posts: 3528 | From US | Registered: Apr 2007
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posted
I make it a point to talk to people who have recovered from Lyme since there are precious few recovery stories here.
My neighbor was sick to the point of needing his wife to assist him to walk to the bathroom. He was this way for several months. After getting treatment he felt better after a couple of months and made a full recovery. There was not much detail available since this occured about 10 years ago.
Our house cleaner had Lyme, again pretty incapacitated before treatment, got better after about 2 months of abx.
My colleague's friend's mother was severly incapacitated for a full year before treatment, she supposedly recovered after 2 or 3 months of abx.
I think the majority of Lyme cases get resolved like the above people, it's just that they got better so fast they never got to posting on the internet.
Posts: 655 | From USA | Registered: Sep 2007
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posted
I've heard similar cases of people getting better either very quickly or not getting better for long long periods of time. I happen to be in the later group which really sucks.
Think most the people that post on the boards here have had lyme for long periods of time, but there are plenty of people that do get rid of it quickly. I too have talked to people that got Lyme and were well within a few months. My pharmacist said her boyfriend had it, got rid of it with a month of antibiotic therapy.
I'm guessing that I am having issues of getting rid of it because I also have Babesia, but I don't know. I just want to get well, I have shelled out more money than most people would believe.
Anyway I hope that you get well soon, and I hope that I get well soon.
Seasons Greetings....
Posts: 158 | From Santa Monica | Registered: May 2007
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adamm
Unregistered
posted
Personally know someone who was sick for a year and made
a full recovery in 2 months. She's been asymptomatic
now
for 9 years.
These are probably the folks with no co-infections, and most
likely represent a small fraction of those who get TBD's.
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Could be.....but isn't it the case that no one who gets Lyme doesn't have any other co-infections? I thought they (co-infections) were considered ubiquitous?
Posts: 3528 | From US | Registered: Apr 2007
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posted
CD57, some people get Lyme and no coinfections, like me. Altho I do have a question in my mind about whether I might have mycoplasma fermentans, since some of my symptoms match a list of the mycoplasma symptoms.
Posts: 13116 | From San Francisco | Registered: May 2006
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Yes. That was me. Herx every 28 days like clockwork, feel like crap, back off meds 2 days, and then felt a little better than before the herx.
I was fortunate to have been treated for Bart right off the bat. (although the first 3 mos. were extremely brutal).
And I did a slow transition to Cat's Claw and have been living a quite normal life for over 3 yrs now.
Wishing you the same!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I think the biggest problem is that some people spend many months or years before they find out what is wrong with them-- before they can get the proper treatment.
In my case I was treated for Lyme after 3 months and got better in a 60 days or so. 30 days of abx and some exercise. Problem is that it kept comming back on and off for 7 years... until my wife finally dragged me to a LLMD who discovered that I had Babesia and Bart. THIS is why I never really got better.
After 30 or so days for treatment for this I am about 60% better, so thinking maybe 90 days or so till I can start exercising again and get on with my life.
Bottom line I think with the proper Dx and treatment most can get better in a matter of 3-6 months. Others it seems to consume their lives for some reason.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Very interesting stories.
And it seems that bartonella can be really a problem player in inhibiting folks from making complete recoveries.
I have all negative co-infections tests but my LLMD knows I have bart based on symptoms....so we're going after that really aggressively (ugh) now. I am making good progress with the cognitive problems, very hopeful!
And I think now that the docs have a better sense of what symptoms belong to what illness, they will know that much better how to treat.
Julie, your doc sounds really at the forefront if she treated bart right off the bat. Great for you!
Posts: 3528 | From US | Registered: Apr 2007
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
5 years and still ticking. Been anything but straightforward for me. I have been thrown some curveballs, such as
mycoplasma that shown up two years into treatment, along with high titres of strep in the blood,
then multiple chemical sensitivity and leaky gut syndrome from all the antibiotics,
to treating bart, then babesia, then lyme
then just this october getting BACK on treatment for bartonella
and bingo.....
bartonella seems to be the culprit for me. Finally, after five years, I feel NORMAL. except today. I'm herxin.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Treatment has not at all been straightforward for me.
I was megadosed with spirochetes and at least four co-infections by a very large female deer tick. Of course, it took months to get educated enough to even go to the right doctor.
I had to stop and start many different treatments because of bad side effects or no improvement.
Finally, after five years of pure hell, this past fall I believe I conquered all of my co-infections.
I am now working on the Lyme disease itself and it has been four months with no ability to tolerate antibiotics anymore.
Because of this intolerance I am now rifing and I'm having some really good results from it.
I rife for two minutes, and then do 1/2 hour in my in-home hyperbaric chamber. That combo got me out of bed for a Christmas party last Sunday.
I feel better now than I have in all the years I've been infected. I think the co-infections are what do a number on many chronic Lymies.
Bartonella was about killing me before I got rid of it with low-dose Levaquin spaced out over six months this past year.
Now I can no longer tolerate Levaquin, but it got rid of my worst bartonella symptom - all-over body spasms resembling seizures.
My doctor is going to put me on the Cowden protocol in about a month.
I'm hoping remission is a real possibility - at last!!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Oral ABX (alternating between clarith/plaq and tetra) for about 4 months. I have small herxes and get better, some ups and downs, but I'm a whole lot better today than I was 6 months ago when I first got the Dx. (I was bit about 1 year ago). I've never missed a day of work and continued to train and race (bicycles)albeit at a lower level than I'd like. I expect my head fog and stamina to return to normal levels over the next several months and to transitionto herbs then.
So, yeah, I think that my treatment has been "predictable."
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
It's been pretty straightforward for me. I have seen steady improvement and a regular herx cycle since I began treatment last January with only one exception.
I was on Cipro this summer for an intestinal infection. I got much better on the Cipro, but declined when the 21 days was over. I got clinically diagnosed with Bart, started Levaquin, and got MUCH better.
Levaquin was a miracle drug for me.
I've had it for 35 years and after 11 months of treatment am about 90%, except for my 2 days of herx and week on Tindamax. For the Tini, I'm about 75%, and the herx, which is two days of that week, I'm about 50%.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Is there any news of people who have been ill for long periods of time before being diagnosed?
Seems like most of you have caught the illness within a year or so.
It seems to make alot of difference in whether you are able to get better.
I've been ill for 10 years & they told me it was fibromyalgia all those years.
I had the usual tests but they were always negative.
I didn't start treating with antibiotics until about a year ago - after 10 years of non-treatment for Lyme.
I tried the abx for about 8 months of different combos & it didn't seem to help me much...
Still in alot of pain - if not worse now.
I'm waiting to try the limited Cowden protocol soon.
I should be able to start it after the holidays.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Me! I had it for 35 years .... really sick for four years prior to treatment/diagnosis.
I have been disabled from the Lyme over the years, but it would resolve itself after several months (and with diet and exercise) ... but this time sick for four years.
Keep trying different combinations and look at coinfections even if you test negative ... I was negative for both babs and bart, but responded to treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymebytes
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Member # 11830
posted
Simply put no. I have had death herxes and felt no better once I stopped it, they never stop on their own.
The one drug that started progression with me created NO herx and was Biaxin.
So, I have come to the conclusion that if it doesn't hurt and just starts making you feel better you have hit a good choice.
I knew a girl who had LD and exercised her way to wellness for 5 years she was great, stopped her exercise program an almost immediately relapsed.
Another girl a runner, sick for over a year took Biaxin only for 7 months and was well.
This makes what Burrascano says have even more impact...you will never get well without excercise and I have seen it and believe it.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
It's been pretty straightforward for me as well.
I think I was bit about 10 years ago or so (did see the tick then -- an adult), but never got full-blown symptoms until about a year ago.
I have Bartonella that we know of for sure, though we've treated Lyme and Bart. I've gotten much better, especially since starting Bart treatment. It's been about five or six months altogether, and I feel about 80% better than I did when I was first diagnosed.
I had small herxes on and off and it seems I continue to make progress (though I hope I'm not going to jinx myself by saying this. I really hope not! ).
-------------------- 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
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CD57
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Member # 11749
posted
I am so encouraged to hear these stories! Esp. from the people who have been ill/were bitten many years ago. Thank you.
Lymebytes--I think you're right--if you hit on a combo that works for you--keep at it!
Posts: 3528 | From US | Registered: Apr 2007
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Rianna
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Member # 11038
posted
Sadly Not straight forward for me.....
Been on treatment for 14 months and physically the improvement has been exceptional, I was bedbound for 2 years and now I can go out most days but I have just hit a major stumbling block, I can not seem to tollerate any low dose AB at the moment as my CNS goes nuts and my herx's have got more severe with treatment and not less. Am going to have IV glutathione and vits for detox as feel that perhaps my neuro toxin load is so high I cannot tollerate any more AB treatment.
I am sure many here hit some kind of stumbling block with treatment but we all find the strength and answers eventually to proceed
Rianna
[ 27. December 2007, 04:09 PM: Message edited by: Rianna ]
Posts: 1172 | From UK | Registered: Jan 2007
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posted
For me, straight forward like a slow growing mutual fund.
Lots of ups and downs, but a overall improvement over time.
Trying to look at the big picture.... Von
Posts: 258 | From Washington State | Registered: Nov 2005
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I thought I would revisit this thread since it's been 6 months....how are people doing?
Posts: 3528 | From US | Registered: Apr 2007
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