HealingWell
Search Close Search
☰

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/5/2013 1:51 AM (GMT -5)
My sister tested positive for Bart, testing for LD will follow, dr wants to attack the Bart first. Didn't find it in her blood, but with PCR testing on a stomach biopt. This is typically our dr: nothing in blood? let's test some tissue, tissue taken from a body part experiencing lots of problems after ruling out other possible causes! :-)

She started Rifampicine, and started reacting on it: swollen throat (can hardly swollow her own saliva), red outbreak on her whole torso, fever, flue-like reaction, achy everywhere. Had to stay in bed.

Her GP gave her antihistamine but it didn't help, her throat stays swollen. Paracetamol brings down the fever though. He ordered her to stop for 3 days, to see if the reaction disappears.

Anyone on here who reacted that strongly on Rifampicine? I had no side effects when I took it last year, except for the herxing  rolleyes  

Posted 7/5/2013 2:04 AM (GMT -5)
Antibiotics can be tested for allergic reactions...suggest this is at least part allergy (or may be part allergy, part herx)...

Antihistamines may not be strong enough dose to stop the reaction, may need higher dose, an H2 blocker (Tagamet, etc.), and/or something like Prednisone.
Posted 7/5/2013 2:25 AM (GMT -5)

That's what I told her, think it's part allergic reaction, part herxing. She was really upset..

I'll ask her to suggest Tagamet to her GP, he's very cooperative. He doesn't want to use Prednisone yet - he has several Bart patients that see the same specialist we are seeing, and does a wonderful job keeping up with literature and research.

Thanks Razzle!

Posted 7/5/2013 3:42 AM (GMT -5)

She went to see her GP again this morning, she couldn't drink/eat anymore because of her throat.

He says it's candida triggered by the Rifampicine.

Posted 7/5/2013 7:06 AM (GMT -5)
Well, when I had a bad reaction to Japanese Knotweed, I think it was part herx & part allergic reaction too (I'm allergic to buckwheat; Japanese Knotweed is in the Buckwheat family). And the difficulty swallowing took an ENTIRE YEAR to _start_ improving...but I still have difficulty swallowing to some extent, even 5 years later!!!!!

So yes, it very well could be a severe allergic reaction. And if she can't swallow anything, why isn't she hospitalized and being given IV fluids?
Posted 7/5/2013 7:17 AM (GMT -5)
I'm calling her 3 times a day to check on her - it started 2 days ago, and she can't swallow since yesterday - I'll tell her to go to the ER when it's still like this tonight...
Posted 7/5/2013 7:41 AM (GMT -5)
Oh wow, Marie!!
Give your sister hugs and send her our best from all of us!!! How terrible and terribly scary!!! I've had my throat swell due to an allergy to penicillin - boy!!

I second what Razzle said about getting her in to the hospital.

Please be sure to update us on how she is doing!
Posted 7/5/2013 8:52 AM (GMT -5)
Oh my gosh. That sounds just like the reaction our daughter had to bactrim. I think she should not be left alone until there is some resolution of symptoms.
Posted 7/5/2013 9:10 AM (GMT -5)
I just wanted to echo what the others have said,it sounds mighty scary and she really shouldn't have to cope with this alone.

Wishing her all the best

Tickled
Posted 7/5/2013 1:59 PM (GMT -5)
The dr prescribed her an NSAID, she can swallow water now, only eating liquid things, but she says it hurts like hell.

I told her to catch up with the drinking so that she doesn't dehydrate, even if it hurts...

Her boyfriend is with her, he's very caring. I check on her by phone throughout the day, many times. She lives an hour away, if I were better I would go see her, but I'm herxing again...

I'll pass her your kind words!

Posted 7/5/2013 2:32 PM (GMT -5)
When is she due to see the doc again? Poor thing!! Have her drink some kind of electrolyte - over here in the US even gatorade would be good, but I'm not aware of what's available there.
Posted 7/5/2013 2:41 PM (GMT -5)
Trav,
On Monday. To evaluate. I told her this morning that she should drink coconut water because of the electrolytes ;-) we're thinking the same thing. We have Gatorade, Isostar and Aquarius over here... may be easier to get than organic coconut water where she lives... I'll call her boyfriend cause I think she'll forget...
thank you!
Posted 7/5/2013 5:01 PM (GMT -5)
Marie,
You're sister is very blessed to have you!!! And thank you for letting us know what's happening! Good thinking!! :-)
Posted 7/6/2013 7:24 AM (GMT -5)
I had the exact same reaction when I first started it. I was worried it was an allergy but I think it was a herx/candida. My doctor had me go off for a few days and take Nystatin. I restarted on my own (not recommending this) and it didn't return.

I remember that reaction clearly because the temperature was in the 90's and it was the worst throat pain I've ever had. I was crying because my throat was so swollen and I was so thirsty but couldn't drink or even swallow saliva. That ended very quickly after taking Nystatin and didn't return. I was on Rifampin with no issues after that for almost a year.
Posted 7/8/2013 2:33 PM (GMT -5)
Ooooooooooo.K.....

She is still not doing better - well, the fever is down, but that's all. She went to see her GP this morning cause her throat is getting worse, she told me it feels as if it's tearing open when she stretches her neck. All raw and red. She can drink though, with a lot of effort, eat soft food. The rash is spreading and getting worse.

GP sent her to a specialist, an otolaryngologist (I had to look that one up, still not my mother tongue... lol), he refused to take a swap, was one of 'those' drs. He called 3 other drs during the appointment for answers on simple questions. Never heard of Bartonella, she had to help him remind what LD was. The only thing he said that it was guessing that it's candida, a swap takes too much time, blablabla, sent her home with Ibuprofen (!!!!!! I'm not kidding). She was so angry...

Oh, she's very strict on sugar, doesn't eat it, for about 10 years now, no soda drinks, no icecream or cookies. Only fruit, but not huge amounts.  

GP is going to look into Nystatin (thank you Summer!), but he wanted to be sure what it was by taking a swap, to avoid loosing more time by giving the wrong medication. He's gonna do research on the subject tonight... gonna see him again tomorrow.

 

Posted 7/8/2013 2:45 PM (GMT -5)
Oh my word!! What incompetence!!! And they actually gave that guy a medical license???? Wow! Can she change doctors?

Is your sister using any probiotics? If not, get her on some good ones right away. Have her take at least 50,000 units a day. As you know, I prefer kefir, as it contains more "goodies" as can be seen here:
users.chariot.net.au/~dna/kefirpage.html#kefiran
You'll need to scroll about 2/3rd of the way down the page for the milk kefir grains breakdown.

Also, she would probably do well to start on the anti-Candida diet. There are several websites that have this.
Posted 7/9/2013 6:36 AM (GMT -5)
The rash still suggests allergy or other bad reaction to the abx. I hope she isn't still taking it???
Posted 7/9/2013 6:58 AM (GMT -5)

Trav,
She can change drs, dr-hopping is no problem over here, she just terminated the appointment, never going back there again... 100% incompetence indeed...
She's on probiotics, 25 billion a day - I'll tell her to increase dosage.

Razzle,
She's off the abx, stopped right away when those symptoms began. She only took it for 2 or max 3 days.

GP confirmed this morning that he'll put her on Nystatin, he did his research last night.

Posted 7/9/2013 3:37 PM (GMT -5)
Please be sure to tell her that we are all worried for her! Also, please do let us know how things are going for her....as well as you!
Posted 7/9/2013 7:14 PM (GMT -5)
Marie, your sister is blessed to have you help her through this. Your strength can be her strength. May God bless her and your family.
Posted 7/9/2013 8:54 PM (GMT -5)
When I've had candida that badly, the pills of Nystatin don't do anything to help. I have to request the liquid suspension and it works within 1-2 uses drastically for me.
✚ New Topic ✚ Reply