diagnosed the end of september with Lyme & annaplasmosis (with the possibility of bart & bab) after 10+ years of symptoms.
started doxy right away, but that's it~ only doxy so far!
2 months into taking doxy the Lyme is now believed to have invaded my central nervous system~ suddenly I am sicker than Ive EVER been in all the years of dealing with this!
WHY NOW~ AFTER starting abx?!?!
This is NOT A HERX! It's new neurological symptoms: severe tremors/shaking spells! numb / tingling / heavy arms, legs, even face! severe weakness~ days I can't walk or hold my head up! Im very scared!
Emergency visit to neurologist ruled out ALS this week~ praise the Lord! Having an MRI done on Wed, possibly followed by a spinal tap.
I know you can feel sicker after starting treatment from HERX reactions~ but this is NOT that!
This is as if the Lyme decided to get overly aggressive AFTER I tried to kill it?
Has this happened to anyone else????? Ive stopped taking the doxy for the time being... Im afraid to start it again!
Posted by canefan17 (Member # 22149) on :
Sounds like an acute Bart flareup.
I'd like into adding Rifampin to that Doxy
Posted by Dawn2137 (Member # 27238) on :
I had neuro sx before ever starting treatment, but I can say they worsened fast on Doxy! I was scared at first (worst part for me has been losing my brain!), but was comforted to read on here that it was all normal.
Getting through doxy I had improvements with lessening of fatigue and neck pain (compared to before I started it). I got to where I could hold up my head at least part of the day!
I'd get back on that doxy! Worsening sx means its working, so keep at it.
I'll be adding another tetracycline next week. I'm excited because I know how Doxy helped me, but also know to expect worsening neuro sx for a while! Good luck!
Posted by Andie333 (Member # 7370) on :
This same thing happened to me. I'd had mostly physiological symptoms, but about a month after I started taking Ceftin, all these neuro symptoms surface: most of the ones you mentioned.
My llmd had cautioned me that things could get worse before they got better, so I just held on and hoped and prayed that the antibiotics would work.
I agree with canefan17 that this sounds a lot like bart symptoms.
I added rifampin to my regimen about a year into treatment. Between that and the ceftin, the neuro symptoms left pretty quickly.
Every now and then, I get a flare of them, but now, I'm still dealing with physiological symptoms--after quite a few years of treatment.
Hang in there; these are nasty diseases and hopefully, you've got a good llmd you're working with. That really does seem to be the key.
Posted by Lymetoo (Member # 743) on :
Lyme can disseminate within days. Maybe bart is the culprit though??
Call your LLMD. I don't think stopping treatment is a good idea at this point!!
Posted by bigstan (Member # 11699) on :
LD penetrates the nervous system rather quickly, like a day or so.
Sounds like it has always been there in a cystic form, (or not active causing symptoms). Now it sounds like your immune system is fighting along with the antibiotic and the toxins from the kill off are causing the symptoms.
Although Doxy is not used to rupture cystic form.
It's in your nervous system and it takes a long long time to get better. Just try to hang in there and back off the med if needed.
Posted by tickbitt (Member # 33753) on :
Doxy is only partly effective against bart. As others have mentioned, you could have bart as well and that's just not going away with just doxy.
I got sicker and sicker while on just doxy because it grew less and less effective against the bart.
Posted by Brussels (Member # 13480) on :
It does look like a herx to me. Most herxes are neurological, but I had heart palpitations, air hunger, tremors, headaches, extreme anxiety, extreme colds, GI symptoms, tummy pain, liver pain...
Most of herxes are neuro, except for a few (like having more arthritic pain). Once toxins acumulate, I got everything: tinnitus got worse, my vision dropped, I even got paralised, all muscles from neck down.
I wonder how can you be sure this is not a herx. Just a question that came to my mind...
I knew my were herxes because all these symptoms I listed above simply DISAPPEARED after taking binders in great amounts (and right binders), in combination. That is why I was sure it was a herx. It came after killers, and went away after a combination of cleaners (loads of things, usually).
Posted by thomasx (Member # 13431) on :
Why do you think it's not a herx? Sounds like one to me.
Posted by gigimac (Member # 33353) on :
Brussels, could you share some of the binders or cleaners you have used? Sorry to go off topic.
Posted by angelaw (Member # 34014) on :
brussels- would love more info on binders? what to look for/ where/ how to take / etc??
need to go back on abx soon, and am very scared too until I can figure out how to manage things. I can't get that deathly sick again- that is so scary!
tried talking w/llmd about it and she said her only protocol is straight abx, no detox. I know I need to detox or do something/anything to help flush the yuck out! wish she would help me =P
only at this battle now 3 months- need all the help i can get- any advice would be so helpful!
thanks everyone!
Posted by nonna05 (Member # 33557) on :
Same here about binders, from Brussels ...but for Angelaw....did you takeant steroids???? for back,lungs anything??..That put my fight into another H---level.
Posted by manybites (Member # 33750) on :
Its is herx and you have had lyme in spine.I have had the same symtoms.I agree that is babs and bart in play you will get sick as this both raise their head and bart is NASTY for neuro.If you add zithr ,or rifampin and herbals for bart will help.BINDERS and Sauna and coffe enemas will give you a relief.
As you treat you will deal better but it takes time.
Posted by nefferdun (Member # 20157) on :
I agree it is a co-infection emerging. Borellia hit a stop sign and now bart (or babs) is free to go. Time to add another drug to the mix. Dr. B says when there are a lot of neruo symptoms, it is probably bartonella.
Doxy is just a start. Even if you did have just one infection (which is so rare it is almost non existent), there are three forms of borellia. Treatment takes a lot of adjustments.
Posted by hopeandfaith (Member # 19884) on :
Doxy is usually the drug that doctors first use to treat borrelia. When I was on it I felt awful the whole time I was on it. But, it did seem to help with my neck pain somewhat, and after I went off I did feel much better.
When you first treat, other co-infections come out. I agree with nefferdun that it's probably one of the co-infections and usually your doctor will begin another drug to address that.
Also, detox and take a day off from the doxy once in a while to let your body clear out the toxins. Hang in there!
Posted by showmemom (Member # 34213) on :
This is exactly what happened to my son. While some parts of his brain improved, others went off the deep end for a little while. Hopefully your LLMD will add in some Zith or Rifampin for the possible bart. It helps so much.
Posted by gigimac (Member # 33353) on :
Just thought I would show you an article I found online by a LLND:
"there is some speculation within the Lyme-literate medical community that there are strains of Bartonella that become more virulent when exposed to doxycycline.
So if my patients get worse taking doxycycline and this feeling worse goes beyond what would be expected from a Herxheimer reaction, it might be that they are infected with one of these strains of Bartonella.
I have been on doxy for 4 months and the first 3 months were really miserable!! I too would consider bartonella.
Posted by lymetwister (Member # 19590) on :
No one can say for sure what is going on !!!!!!
I can tell you that I never had a single head symptom until I got on Abx. That was 3 years ago, but symptoms for 2 years prior.
I was on IV Rocephin and some other Abx, but never Doxy.
I just started Doxy a little more then a week ago and let me tell you it's kicking my butt.
The Fatigue is Unreal. Coffee might as well be water.
I'm aching all over and I rarely ache. I'm getting joint pain in my fingers and I never had this in all these years. I'm cold like a flu like cold. Alot more...
Some side effects of Doxy are there, but this other stuff is more then likely Toxins and Inflammation.
Keep in mind, there are NO real answers anyone can give you or me as to what is what. It's pure conjecture based on personal experience. It helps if 10 people come along and say "Yeah I had that". Then you feel safer in your mind that perhaps it's all just transient, but even then, your body might react differently.
It is what it is so try and just go day by day for right now. Detox you behind off and take breaks when/if needed.