Lyme Disease Support Group

I have been on PICC line Iv treatment of rocephin for 6 months, my doctor decided to let my body have a break. {also had Babesia} This was 12 days ago, he said lets try 2 weeks or a month. But I have had horrible symptoms since ending it, with in 3 days, severe headaches, pressure in my head, like a balloon about to pop, nausea, low grade fever,insomnia, extreme fatigue. I got scared and called, was told oh it's inflammation. Take Tylenol for fever, but hang in there...the doc said this happens to Lyme patients because the antibiotics act as an anti inflammatory. I was never told this is what to expect~! Now my whole body is aching and neck is bad. Has anyone else experienced this post treatment or withdrawal from their current antibiotics? Any input would be greatly appreciated. Because this feels like pre treatment to me.

Thanks~!!

Robin

However, it doesn't surprise me. When a threat appears to the Lyme bugs, whether it's antibodies or abx, the bacteria goes into hiding. Once the threat is no longer present, the bugs will come back out to play. I have no doubt this is at least part of what you're feeling.

It's possible your doc is trying to monitor this reaction and see how many hiding bugs you have. I'm not sure. If it's more than you can stand, be sure to let him/her know.

I'm glad it doesn't sound like your doc wants to make this permanent. Obviously you're still infected and still need treatment.

Post edited by: Kyrenora, at: 03/13/2012 10:04 AM

I undersstand that an infection can cause inflammation and if you redcue the infection, the inflammation will decrease. That one makes sense. But the other does not.

When we tried reducing abx the first time, child was in pain free state for about 2.5 mos and getting stronger. Within one week, debilitating headache, hyperacusis, tinnitus returned, child felt sick.

The second time we tried reducing the abx, child had been pain free for about 4 months, gaining strength and independance. 10 weeks later, an early symptom returned, LUQ abd pain and abnormal bm. The LUQ abd pain first appeared in 2009 in the second week of illness. Similiar pain and bowel dysfunction. Strange bilateral glove like hand "rash" returned, but is behaving differently this time, it came and went, but then returned and has not left.

Extensive GI/abd/pelv/kid/metabolic w/u negative, but child debilitated. About 2 months later return of deviated tongue (cranial nerve sign). GI diagnosis "visceral afferent syndrme". It reads like NDPH, except in gut. First line treatment for the 2 neruo syndromes are the same, low dose to increasing dose amitriptyline. Did not help with NDPH or VAS pain, caused increased abd pain.

I think the problem is inflammed or irriatted nerves, what is not clear is what is the irration from? chronic infection? auto immune sydnrome? combination of the two?

The amitriptyline increased the abd pain and bowel dysfunction in both NDPH and VAS. It's side effects say that that can happen, but then why give it? It makes me wonder if the mechanism for the pain in Lyme disease is different than in other instances of NDPH and VAS...?

LLMD set treatment.

We looked for other supportive therapies for pain relief and reduce irriation. My kid has been in constant pain for most of the past 2 1/2 years, it's too long for goodness sakes.

Got significant pain relief with chiropractor and OPC-3 isotonix.

Got some more with acupuncture, although at first it scared us, but that may have been a "healing crisis". At the 4th treatment, the improvement is beyond when first started.

Chiropractor recommened colon hydrotherapy. We're not sure yet if we woudl do that again. Did 2 sessions, good output. Abd was much less swollen, it surpised me, but not sure if pain is gone yet.

Best luck!

Rocephin pushes Bb into cyst form almost immediately. This is where they hide out and are protected from the abx.

Therefore people will have rather quick results, until a week or two off. Then the Bb come back hard and do what they do.

Ask your doc about this and if he/she doesn't agree, run--don't walk--away and use the doctor request forum for a new LLMD or LLND.

the other thing to consider also: if you have co-infx (I know you said you had Babs), your Lyme just won't go away until these are addressed as well. Babesia needs to be treated a minimum of 9 months they are finding. And treatment for Babs needs to go 2 full months past symptoms. A lot of what you describe is Lyme, the other thing I read is still Babs.

All the best,

Lauren

Waiting on a phone call today back from him, but am still having severe symptoms, he is a infectious disease doc not specializing in Lyme,.but the only one my state insurance with cover. I'm scared because I don't want full blown Lyme again~!!!

Robin

PS, maybe we should have a sticky post with acronyms and abbrevaitions

(if there already is one, I'm not aware of it).

many apologies! I remember the first time I saw "LLMD", couldn't figure it out either

abx = antibiotics

LLMD = Lyme literate medical doctor

LUQ = Left Upper Quadrant (on the abdomen), it's an anatomical reference, if you "Google" it, there's some very nice descriptions online

GI = gastroenterology

pel = pelvis (my own abbreviation and laziness, really sorry about that)

kid = kidney (my own abbreviation and laziness, really sorry about that)

w/u = work up

NDPH = New Daily Persistent Headache, a new headache syndrome described by Lee and Rosen.

Did I miss any you wnated to know?

I'll try to curb my laziness.

Best.

Thanks for the abbreviation reference, I didn't know all of them either~!

Did you see the "snippet" from ILADS's Dr. Horowitz? Here's link:

http://lookingatlyme.blogspot.com/2011/10/ilads-conference- toronto-snippet-but.html

Can't let this happen, been so sick since ending abx,...called up another lyme doc in NYC, strictly out of pocket, but what else am I to do? Has anyone else had a doc that doesn't believe in extended lyme treatment even when you still have the symptoms?