posted
Hi. I have Lyme and Bart. Been on Doxy for 6 months and Rifampin for 5 and Levaquin before that. I take supplements and eat well etc... Besides the occasional herx I have been steadily getting better. Then I got a cold and fever and a herpes out break and now , for the last 3 weeks, I have my twtching back and worse then when I got sick and now major vibrations in my legs all the time and muscle cramping in my feet. What the heck? What do I do? What is going on? Opinions please.
Posts: 298 | From los angeles | Registered: Mar 2006
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
LAlyme....
Did you stop abx and these symptoms arose?
Is it possible that you were re-bitten?
I took ammoxy and doxy initially for six months after diagnosis,,,,
Then the ducks took me off all abx and I relapsed big time....
this could have happened to you.
Also....when I first got on IV ceftriaxone...I developed a virus in my lungs that resembled pneumonia or bronchitis...
What I'm suggesting is that there is(or seems to be) a decided viral personality in this bacillus...
You may want to incorporate an antiviral to go along with the antibiotic and if you can an antifungal.
This approach may help you get back on track... IT is quite common to have relapses with this disease...because of it's self preservation techniques and abilities and the complexity of the number of strains/coinfections....
Nothing the rest of us have'nt encountered...so don't panic...
zman zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
SOunds like possibly another co-infection is emerging- remember that they can be seronegative- people can die of acute ehrlichiosis without it ever being seropositive- many times one disease will suppress another and if you treat one then those symptoms will disappear and there will be a completely new presentation!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
It could be so many different things, including a need of change of abx, especially if it keeps going the way it is!
It could be what the other said too or none of the above. When I would get sick in the past with anything, it would flare me for a long time- especially anything viral. I just had the flu and it brought back some of my headaches and alot of my stomach pain and its been over 4 weeks.
I hope this clears up for you soon!
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry to hear you are dropping downwards.
The muscle cramping makes me think... have you been tested recently for Babesiosis.. or treated?
posted
Hi Guys, couldn't get on the site to respond. I never went off the meds Tony, but I did start nystatin. So who knows. But my question to you all is how do you stop yourselves from freaking out that something terrible is happening, like that it may be turning into ALS or something awful like that. You all seem so reasonable about everything and I always feel lke a ball of anxiety jumping to terrible conclusions.
Posts: 298 | From los angeles | Registered: Mar 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I echo Lyme Ed in that a cold or flu can seriously flare folks and even do some setbacks. The lovely Doc J has as criteria for taking his pediatric patients off antibiotics and declaring them in remission that thye must make it through a cold or flu without a flare!!!!!!!!!!!!!!!!!!! Because in patients who seem completely well a cold or flu can still bring it out!!!!! It's very possible that's all it is, not another coinfection or anything!!! Take care, Sarah!*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
Thank you so much for all responding. I wonder if it is the cold, because tonight it is a little better , and I am having that "toxic" feeling which for me sometimes means that things are at least trying to work themselves out.
Posts: 298 | From los angeles | Registered: Mar 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi, LA!
Gosh, I remember when you were new.
And look at you now, just steadily getting better.
I KNEW you would!
Dumb ducks!
Hey. I think Tony's suggestion is a good one that you ought to talk with your LLMD about -- adding an anti-viral, because lyme is known for agitating resident viruses (virii??) and stirring them up.
Another thing to consider: You've made super progress in seven months. But setbacks? Hey, 7 months really isn't that long in treatment. I was just starting to see daylight at six months. So you are lookin' good!!! So I would stay the course, too, unless a decline hangs around for a protracted period.
Another thing to consider: Isn't LymeNet amazing?
Give yourself a pat on the back for bucking the ducks and diving into lyme treatment. You are getting better!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I started feeling weird when I started Nystatin after 4 months or so of doxycycline. I never quite figured out if it was the anti-fungal action killing off a lot of yeast and flooding my system with dead yeast, or if it was another drug (I switched antibiotics at approximately the same time), but it definitely felt 'toxic'. A lot of people who are concerned aobut candida report that killing it off all at once can be harsh on your system, Lyme or not. My LLMD told me to take a lot of chlorella at the same time so as to absorb some of the heavy metals that come from the dead candida.
-------------------- Symptom Free!!! Thank you all!!!!
I did exactly the same thing several months ago(15# weight loss is 5 weeks ,primarily muscle) and when I went back on my abx. of choice(iv rocephin, i slowly gained it and more back.)
with lyme and your recent outbreak i'm not surprised at all that you've suffered a relapse. Lyme is an opportunistic disease and it only stands to reason that with those other infectious issues that your immune system "ramped" up and laid you low
Take heart ,get back on your horse and you will beat this hideous disease.
i beleive(and numerous japanese studies back up the fact that quality chlorella[kyoto or sun brands] boost white blood cell productuion/function.
Happy Holidays And I hope you get back to feeling better
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
| IP: Logged |
posted
The Lyme bacteria are susceptible to abx only during their reproduction phase, which may not occur for 18 months. Thus, if you are not on abx for at least 18 months, you very likely did not eradicate the infection, and it is likely to spread again.
Posts: 727 | From USA | Registered: Mar 2006
| 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!
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
![[Mad]](mad.gif)
and when I went back on my abx. of choice(iv rocephin, i slowly gained it and more back.) ![[Roll Eyes]](rolleyes.gif)
![[cussing]](graemlins/cussing.gif)
Printer-friendly view of this topic