posted
I don't understand. I started on doxy 5 weeks ago. Added rifampin 2 weeks ago. Only sx have been a sore throat for 3 days, swollen lymph nodes and now I have a small rash over the swollen glands. Since I have an MS dx and severe neuro sx, I feel like this is not much of a herx reaction. I callen my LLMD and the RN told me to go off all abx till the sx go away and restart at a lower dosage.
Does this make sense? At this rate it will take me forever. What do you think? i told her this was not uncomfortable and she said it could get worse.
Posts: 830 | From Colorado | Registered: Mar 2005
| IP: Logged |
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
at about this time you could defintiely be 'herxing' where your symtoms get worse..some have a strong reaction, ohters lessor...what symtoms led to the ms diagnosis, or was it jsut a doc who didnt' know lyme had so many neuro symptoms?
sounds like you're heading in the right direction with treatment..just make sure the doxy is 300-600 mg per day to get best results...and you may want to get checked for coinfections or check with a good llmd to see if your symtoms warrent treatment anyway....or is that what rifampin is for (bart?)
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
| IP: Logged |
posted
I have had sx for 18 yrs. The last tick I found on me was a deer tick 7 yrs ago. I asked for a lyme test and was talked out of it, you know the story... A year ago I asked again ahnd the WBlot was sent to Quest. This year I sent it to Igenex and positive. I have one lesion on my neck in MRI so the neurologist DXed MS b/c I was having trouble walking and optic neuritis. Now I have to hold onto the walls b/b of leg weakness and balance.
I suspected Bart b/c of the throat and glands, so I asked if LLMD would add rifampin. He did and the sx are continuing, mildly.
I appreciate the encouragement. I fall quite a lot and last week I broke my kneecap in half. Ouch. So I have a sense of urgency here.
Posts: 830 | From Colorado | Registered: Mar 2005
| IP: Logged |
posted
Hi, I've been on rifampin/mino for almost 6 months for bart. Major swollen neck glands,sore throat, brain fog for the first 4 months. Am switching mino for doxy this month. Have had great improvement so far.Have had lyme/bart since '84 dxed as MS
Posts: 740 | From BC Canada | Registered: Mar 2003
| IP: Logged |
posted
Ali, I have had difficulty walking for the last year.wheelchair/scooter when I go anywhere. When I started the last combo for bart, it brought out a rash mostly on head near hairline/temples. I too have fallen many times.Fell in the bathtub (getting out) and cracked 3 ribs..fun.
Posts: 740 | From BC Canada | Registered: Mar 2003
| IP: Logged |
posted
It was my understanding that Doxy works by interferring with the way the bacteria multiply and that a 400mg/day saturation level is needed to pass BBB. The 400mg/day level is already 2x the recommended amount for this abx and the "herx" one hears about may be a adverse reaction from an OD or pulsed dose. I don't know about anyone else but I get a twitching sensation in the liver area when damage is being done. FWIW I spread out my doses as much as possible daily so as not to shock my system further, yet maintain the saturation level at 400mg/day. Maybe I'm wrong about this approach, but from what I've heard Doxy doesn't kill the bacteria directly. I would think also that the "toxins" would be flushed out better by higher water intake, salt, vitamin C like http://www.lymephotos.com/ has suggested.
Posts: 40 | From Pacific NW | Registered: Mar 2005
| IP: Logged |
posted
Thank you for the support. Yes, I need to drink mmore water, C, etc. I just am pretty much house bound if I drink more than a quart at this point, in terms of "accidents." I guess I have to risk it.
So, KRAZYKT, how did you start to feel better? I am recovering from the kneecap fracture, so it is hard to know how my walking is effected as I am on crutches. Did you ever stop the Mino/rif because of the throat, rash, glands sx? What did your LLMD say?
I am concerned that my LLMD is not aggressive enough. Thanks.
Posts: 830 | From Colorado | Registered: Mar 2005
| IP: Logged |
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
quote:Originally posted by aliyalex: Does this make sense?
Absolutely
quote:At this rate it will take me forever. What do you think? [/B]
Didn't I read that you've had these (LD) symptoms for 18 years or so? So, to answer your question above, you may think that it has taken forever by the time you do really get better and substain it for any length of time...like many months to years.
Remember, you did not just get this over night (if what you say is correct and you may have actually had this for a very long time), and, you will probably not be getting rid of it overnight as well.
BTW, some prople never experience with some folks say is a herx reaction...some just don't, but, that's not to say that they are not infected. Some do not get the rash, but, as you know are still infected...keep reading the picture will be come clearer the more you learn.
Not trying to be the deliverer of gloom and doom, but...keep reading, you'll begin to really understand.
posted
Thank you. I guess I just need to be patient. I" guess for 18 years I have gotten worse, the thought of getting better is such an amazing prospect.
I will be patient. And I will continue to read and do more research. Thanks.
I will hang in here....
Posts: 830 | From Colorado | Registered: Mar 2005
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Welcome back Rosesisland!
aliyalex, severe herxes can be set you back. The body can only handle so much detoxing at one time.
Swollen lymph nodes is a sign that toxins are backing up in your symstem. Drink a ton of water and back off the abx as your doc suggested.
Slow and easy.
Pam
Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
Thanks Pam. I finally let it all the way in. OK. I will be patient. And go drink a ton of water.
Posts: 830 | From Colorado | Registered: Mar 2005
| IP: Logged |
posted
Ali, I was on abx in '97 for about a month...then doc would not extend treatment, I ended up in wheelchair. This is my experience only you understand..I WOULD NOT STOP ABX. (cut back on meds if herx becomes too bad,but I would NEVER stop them)
Posts: 740 | From BC Canada | Registered: Mar 2003
| IP: Logged |
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
ailyalex- Is the sore throat something new? You could have a thrush infection. That is, a yeast infection of the throat because the abx killed all the bacteria, good and bad, in your mouth and the yeast, which isn't killed by abx, are now having a field day. Get your throat looked at ASAP, mostly any doc can recognize that. Make sure to tell them your abx history. If it's thrush you'll need an antifungal like diflucan. Thrush can get real bad real quick so make haste.
Going off abx will help the thrush problem but then you're not killing Lyme. It's a balancing act .
cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
A little bit different perspective. I've been on a variety of meds for close to 4 years now and have rarely if ever herxed. While I do think probably a majority of people do, just because a person doesn't, it does not mean that the meds aren't working. I think with lyme meds you also have to take into account that it may take a good 3-4 weeks before they really get into your system to see if they are working on the darn buggers or not.
I think it's really important to keep track of how you feel and look at symptoms. Some you will find cycle, others will not.
There's a lot to consider and what the others have said is correct - patience young grasshopper!!! It's a long and tedious process to wellness. As an aside, I am finally on my way and doing lots better - all probably herx free. cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
| IP: Logged |
posted
I too don't know if I buy the whole herx story. WHile my LLMD said it would be nice to see a herx he didn't say that without a herx the meds are not working. I already had positive pcr and wb test so a herx wasn't necessary for a diagnosis indicator. I have been on abx for two years and with the exception of the first week of abx (fever, chills, sweats) I haven't herxed but I do feel better and am making progress. A year ago I couldn't turn my head to the side without cracking and extreme pain. THere are many symptoms that I don't have anymore or that are very minimal now. I think as long as you are making progress don't put too much emphasis on having a herx.
Posts: 649 | From United States | Registered: Dec 2003
| IP: Logged |
posted
Thank you all for the wisdom and the different perspectives. And Lymetoo, thanks for the valuable tip. Makes sense. All of it.
By the way, the sore throat was 2 weeks ago for 3 days only. Thrush is not a problem. I started to feel funny in the tongue and I increased probiotics and it went away.
It is good to know that people are getting well without herxing. Wellness to all of us!
Posts: 830 | From Colorado | Registered: Mar 2005
| 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!
oops! 
Printer-friendly view of this topic