posted
I was just wondering if anyone on here is having to stay at low dose antibiotics becuase of herx reactions and if you feel you are getting better???
I have been on low dose oral ABX for almost 5 months now (taking one dose then skipping the next 2 days wit zithromax)
I have noticed at several moments I have felt better than I have since being ill but I still seem to herx really hard and constant as well...
posted
Some people with the als/lyme presentation are staying on low doses because the herx makes the wasting worse. Whether these low doses (to avoid herxing) will make anyone better is the question. I don't know what the track record is.
I think the als/lyme presentation is especially troublesome because if you don't do well on aggressive treatment, the alternative is entirely uncharted territory. If drugs need to hit intracellular organisms, and spirochetes can inhabit neurons, what happens when these intracellular organisms are attacked by drugs? Seems likely that it does the neuron no good. Plus, herxing turns loose inflammatory cytokines by the immune system, and these are known to have neurodegenerative effects.
This may not be what you are asking specifically, but it is an example of one group of lymies response to treatment, and the subsequent need to lower the dose.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
ByronSBell 2007
Unregistered
posted
I dont have ALS. My Main 2 symptoms that are really hard on me are chronic nausea and chronic headache, I have many other syptoms but these are the BIG 2 for me. If I herx too hard then it puts me on the floor grabbing my head and I cant squeeze anything down so I just lose more and more weight.....
IP: Logged |
Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Nausea was one of my big symptoms too.
With treatment it's almost gone(99.9%).
Garlic juice helped a lot.
Posts: 1078 | From Fairland | Registered: Apr 2006
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Here is what I would say, if you are not getting worse, and slowly getting better,
and each month or every week of couple of weeks you are able to increase your meds, then maybe?
you are on the right track?
I was in lyme treatment, oral antibiotics and started to get worse, I was getting sick from light, and then EMF sensitive,
I was then switched to babesia treatment, and started to get better from light.
it is tough, keep asking and searching the archives, and PM anyone that you think might have answers for you,
My advice, isnt always right, but may be. It something is knawing at you, and you dont have the answer right then, keep a journal of UNanswered questions you have
concerning yourself, and then one day, later down the road you may find the answer.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Health said:
quote: Here is what I would say, if you are not getting worse, and slowly getting better,
and each month or every week of couple of weeks you are able to increase your meds, then maybe?
I really agree with this. It might not hurt to continue to wait and see what happens and if the meds can slowly be increased over time.
Health also said:
quote:it is tough, keep asking and searching the archives, and PM anyone that you think might have answers for you,
My advice, isnt always right, but may be. It something is knawing at you, and you dont have the answer right then, keep a journal of UNanswered questions you have
concerning yourself, and then one day, later down the road you may find the answer.
And I like the quality of this response, too. She acknowledges that she may or may not be right and then proceeds to give more good advice, IMO.
Keeping a journal during my darkest days really helped me keep track of what was working and what was not. And it generated good questions to ask.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
| IP: Logged |
ByronSBell 2007
Unregistered
posted
There is no way I can increase my meds... I think I would die
When I was on ceftin I was able to take 500mg everyday and it was kinda tough but I could handle it until the big 28 day herx came and it was BAD! Biaxin/Plaquinil and Zithromax have been different stories, those I have to take 1 every 3 days .
IP: Logged |
ByronSBell 2007
Unregistered
posted
Do some of you find that zithromax is harder to take becuase it stays in the system a long time??? Do you seem to herx harder and more often...?
IP: Logged |
None of my family members can take high doses of abx. I felt exactly the same way you do when I started (That I would have died)
I started Oral Minocycline in Jan. 2005 at 50mg a WEEK. I have slowly increased to 300mg a WEEK. That is still considered a Very loww dose.
I have shown alot of improvement over the last 2 1/2 years. My pain is down about 70%. I used to have severe(8 -10) headaches on a daily basis... now I may get a headache once a week or less and now they are only a 2 on the pain scale.
Joint pain has decreased, speech has improved, memory has improved.... I actually will remember someones name when introduced to them and remember it the next time I see them.
Fatigue has improved aboput 70%... I used to have days where I could not get out of bed or I would sleep for 12 hours at night then take a 3 hour nap during the day.... Now... I sleep 8 - 10 hours and don't nap any more.
Things that I don't have anymore...
carpel tunnel TMJ heel pain allergies neck pain confusion disorintation hair loss menstrual irregularity abdominal pain constipation Tingling, numbness depression Waking up and feeling as if a truck ran you over.
I still have some symptoms right after I take Mino, I will usually herx for a day, then the herxing stops by the next day.
Also my son is on very low doses of Zithro and doing well on it. (250mg every other day)
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!
![[Roll Eyes]](rolleyes.gif)
![[cussing]](graemlins/cussing.gif)
![[Smile]](smile.gif)
![[shake]](graemlins/shake.gif)
Printer-friendly view of this topic