Chronic Lyme's

Came across this site and thought the messages were helpful/informative... I believe I've had Lyme's disease for appx a year or 2. It has been a long journey trying to get treatment as it sounds like is the case with most everyone. I was given Doxi (antibiotic) for 2 months about 3 months ago and I don't think it helped much at all. I just started taking Rosephin 3 days ago via infusion and my symptoms are getting worse. Has anyone else experienced their symptoms getting worse after starting Rosephin or other antibiotics? My wife has a friend that had Lyme's for several years and she said this happened to her as well when getting treatment. Any thoughts/advice is much appreciated.

[wonko]

Sorry you're here, but glad that you found us.

I'm distracted at the moment, but would like to quickly suggest that you look  "Herxheimer reaction," which we also call a "herx" for short.  Basically, as the antibiotics kill the Lyme bacteria, the die-off causes a spike in symptoms.  It could explain your worsened condtion since started Rocephin.

[patsy10]

Welcome.  My thoughts are the same as wonko posted.  This may a good sign that the bacteria are dying off.

[gorbybelle]

good advice already - just wanted to add there is also a possibility of 'side-effects' from the antibiotic - though a 'Herx.' reaction is more likely if it is a worsening of existing symptoms - rather than 'new' symptoms.

best wishes

gorbs x

[wonko]

Good point, gorbster.  I myself am often confused as to where on the side effect--symptom--Herx continuum my issues lie.  

It's my basic understanding that a Herx should not be ongoing, and should be followed by a period of improvement, whereas a side effect will persist without an associated improvement.  But I don't think it's always that easy to distinguish.

[cindy903]

how do you deal w/ die off / toxins. I know they say sauna etc. what elese?

[JackieCalifornia]

My Herxes have never been worse than the initial infection, and the Herxes don't last very long for me ... maximum a couple of hours usually.  I just feel punk and like I'm coming down with something.  Then I realize what it is, and put up with it till it's gone.

I don't have access to a sauna but I hear they can help.  A hot shower and a little passage of time and I'm good to go.  But like with everything else connected with Lyme, it's different for everyone.

Rest, nourishing comfort food, sleep, Tylenol etc. maybe ... and time.  

[gorbybelle]

if you 'google' - herximer reaction - some of the info. includes ways to help get rid of the toxins  - quite often people stop the anti-biotics [myself included] - because of how horrible a 'herx' can make them feel - whatever happened in my body - one thing is certain - my body closed me down to work on eliminating the stuff - another thing - most importantly - I felt the best I have in a long time - once the 'purge' was over.

gorbs x

[wonko]

I've had some reactions that I think were Herx's.  They would start within 2-6 hours of taking antibiotics, and were acute worsening of symptoms such as fatigue, pain, brain fog, burning sensations, etc.  Sometimes I would also feel more emotional without a real trigger.  Then, a day later, I'd feel better than before.

But I also had much longer and more difficult reactions to medications.  I had a month of nonstop problems after increasing one of my doses.  I then stopped that medication altogether.  Then, I had another month of nonstop problems after starting a new medication.  

I don't think those were Herx's, and were more likely side effects or some form of intolerance of those medication choices.  I did have worsening of my existing symptoms, but I never got that period of relief afterward, and my worsened state didn't relent until I stopped the medications.

It is very frustrating because it takes time to titrate doses and to assess the situation.  For awhile, I took the attitude that I had to gut it out and push harder, but now I'm learning to back off sooner when my medications cause me that level of grief.

As for detoxing, although "toxin" is extremely vague, I do believe that keeping your body clear of wastes is important.  I've had issues of constipation, and notice all of my Lyme symptoms worsen when I'm backed up.

I drink plenty of water and I take salt baths.  I try to eat a good diet and am in progress of further modifying what I eat to reduce sugar.  These simple steps, along with avoiding processed foods, are the best I've come up with so far.

[gorbybelle]

I have read quite often - when 'googling' - Herx reaction' - that if constipated an enema is a good idea - symptoms from 'toxic waste' can subside pretty quickly - after a 'good bowel movement' - !!!  [ only what I have read ].

[lymed]

Thank you all for responding. I have been taking an antibiotic (Rosephin) for 8 days now. Prior to taking the antibiotic my symptoms had eased up a bit. I was tired which is normal these days, but my neck, shoulder, leg pain was not bad at all. Appx. 3 days after starting the antibiotic, when I woke up, I had to have my wife help me out of bed. Everything hurt and was stiff. This continued for a few days, but this morning only my left shoulder and neck are stiff. I also feel like I have more energy.

Is there any reliable way to know that someone is rid of Lymes given the tests aren't that accurate? How can I know for sure that feeling better isn't just a brief period of relief before symptoms come back again. My infectious diseases doctor said I should take the antibiotic for a month and then we'll discuss taking it for another month. Any advice on how long I should take the antibiotic?

[patsy10]

Only your doctor can tell you how long to take antibiotics.  It seems most LLMD's treat until symptoms are gone.

[margypops]

I finally bit the bullet and am going to see what they can do for me on Thursday appt, I dont know how literate he is in Lyme but I have got to start somewhere, know how you feel lymed,will let you know what they say this time....