seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have been feeling very ill the last week. Prior to this, I was on Biaxin/Plaquneil (1,000 mg/400 mg) daily for weeks. I was feeling pretty well much of the time and had no big medication issues.
About a week ago, I started to get pretty ill. My stomach was bothering me a lot. Rumbling feeling, diahrrea (yellowish and somewhat sticky), very tired.
I called my LLMD's office and told them the issues. I asked for a C-Diff test and they ordered this (toxin A and B), Stool ova & parasites and one other stool culture test. This was last Saturday. I was told to discontinue all Abx until told otherwise and concentrate on probiotics / S. Boulardi.
I'm kind of frustrated because no one ever bothered to get back to me for a WEEK now. Luckily, I can get lab results myself from my hospital w/o needing the doctor. I was negative for C-Diff and no parasites/ova seen.
It's been a rough week though. Running low-grade fevers 4 days in a row (99-100 deg), bad chills, terrible coughing, dry heaving, lightheaded, sweats, fatigue like I've never had, etc.
I was so tired yesterday I could barely get up. It scared me. My body felt so heavy.
I went to my PCP yesterday and he blew me off. He kind of chuckled when I mentioned my C-Diff test. He gave me an albuterol breathing treatment and prescribed Augmentin and said all will be fine in a couple of days. He doesn't even ask me what drugs I take or have taken anymore. Hasn't for a year!
I took my first pill of Amoxicillin and today my stomach is rumbling again. Somewhat watery stool, but not terrible. I've been dry heaving so bad I actually hurt my stomach muscles. My stool seems to be kind of a grey color. More of my discomfort in my abdomen is on my left side middle. I asked my PCP about gallbladder issues and he let out his loud chuckle again.
C-Diff tests aren't accurate, right? It sure would've been nice to get a response from my LLMD in a bad situation. I hope the typical response rate is better than this if I had a major emergency.
Any thoughts? Am I overworried? I'm not sure what to do. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
Herxing can cause terrible stomach problems. It takes a long time for the stomach to get use to it. If the C Diff test is neg. then I would assume it is a herx. I take omneprazole every morning and that seemed to help my stomach issues.
Posts: 303 | From green bay, wi | Registered: Mar 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I am going to start a proton pump inhibitor to see if it helps at all.
I'm really starting to believe my BiPAP treatment hurts more than helps me too. 2 years on it now. I wake up totally unrested. I see no benefit from it. Everyone I know who has a CPaP raves about it. I have zero energy. Tough to accept.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Bump - looking for more help. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
It sounds like a stomach virus. Maybe you're "just sick" like "normal" people get sick. ???
I would think it's not c diff if you tested negative.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Six, my LLMD does think it's C-Diff and said the testing is pretty bad. Just got off the phone with them. They said 10 days of Flagyl. I've never taken a cyst buster in my life. This should be interesting! They were not happy my PCP prescribed Augmentin at all. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
I'm glad your LLMD is on the ball with this.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yeah, there is a part of me that is excited that it could make me feel better for once. 2+ years of treatment and no cyst busters used. We'll see.
quote:Originally posted by jkmom: Good luck with the Flagyl. I like taking cyst busters because it is the only time I have felt like I was herxing, and it wasn't terrible.
Even my daughter, who is much sicker than I am, responded pretty well to Tindamax.
It's not always a horror story when you add a cyst buster.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
I'm glad you're finally going to take a cyst buster. You may herx hard, but it should be good to get rid of all the cysts you must have by now.
I REALLY REALLY hope you feel better SOON!!!
Please try to find a new PCP. He sounds terrible. I feel for you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks for the advice everyone. I didn't have a very good weekend. I had to go to the Emergency Room because I was feeling dehydrated from 'going' so much. Nothing was helping.
They ran a bunch of lab tests. All blood work was perfect. Stool cultures supposedly negative, no ova/parasites seen again. I'm waiting on the C-Diff test for my second sample. I'm pretty sure I had it regardless. Did some x-rays too and they all were normal fortunately.
They started me on Flagyl too. 1,500 mg a day for 10 days. Hopefully it works. I took my first pill last night.
I just feel yucky overall (before meds even). Just sweaty, fatigued, real-off balance feeling, etc.
Sadly, I'm guessing my days of Abx may be over. It may be for the better honestly. I'm starting to lose faith in this approach. Doctors have had me on Abx for over two years now. I'm not convinced they are the answer. Though my treatment wasn't that impressive for the most part.
In my heart, I believe Babesia is the big issue and Lyme not so much. I think my body can handle Lyme IF I have it. I think Babesia broke me down. I think my LLMD will want to put me down an herbal path which I don't know if I can afford.
I guess we'll see where these 10 days of Flagyl take me and go from there. Somehow this endless pill popping needs to change. This surely wasn't how I wanted it though. It would be easier to accept if one of the labs actually come back positive for C-Diff so I have no doubts.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hey Seek, glad you are on the flagyl. Was concerned, reading this thread in order, that you were not being treated regardless of test results.
So sorry you are dealing with this. It is horrible. I know.
If Flagyl is too intense - if it creates a massive, unbearable herx (it did for me) - you have other options with regard to C Diff. So don't despair.
Vancomycin hits C Diff, and stays in the gut. So that would be your next line of defense.
In addition to your Flagyl, S Boulardii and probiotics... you *could* try adding oil of oregano, raw garlic, turmeric (not all at once).
Keep in contact with your LLMD regarding worsening symptoms, etc.
As for having no doubts - if this starts to clear up the issue, you'll know.
I've had recurring bouts of C Diff, and seem to have *finally* cleared it up, knock on wood. If you need any info, feel free to pm.
Sending get well vibes.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Biaxin kills the heliobacter pylori. Could be a herx if you would have this one. Have you been tested for heliobacter?
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
This is bummer news Seek. I'm hoping that your flagyl course will be easy, no crazy herx, no side effects.
Honestly when I read your top post just a min ago I thought it sounded like you were fighting a virus, especially with the other symptoms like coughing. So that is still a possibility. But I'm glad to hear that your LLMD responded well and is treating you preventatively because C.diff is nothing to mess around with.
Hope you feel better soon Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
I also think you should look for a new PCP. Maybe you could ask your local support group for a Lyme tolerant doctor. Not one that would treat, but one that wouldn't laugh at you at least.
Hope you are doing ok on the Flagyl.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
You were on Plauqenil. That's supposed to target Babesia, and your symptoms all seem related to Babesia! Rocky feeling (off-balance) feeling, sweating, fatigue... That's all Babs.
I think you were having an incredible herx.
I was on Plaquenil for two weeks before I started having severe nerve pain. I had to stop, but my LLMD insists it's not an allergy and he gives Plaquenil to little kids. He says I'll need to be able to tolerate it before I'm done with treatment.
Regardless, I've had plenty of stomach issues, going to the bathroom a lot, diarrhea, feeling dehydrated, etc. through this whole ordeal, but it always resolves itself. I just take a lot of probiotics, garlic and sometimes OLE.
However your other symptoms make me believe your herxing from exactly the bug you were trying to attack.
Also, I started Flagyl 5 days ago, and I'm doing just fine on it. I started slow like I do with every ABX. 250mg 2x daily, but I ramped up to 500mg 2x daily today. No problems with stomach like I had the first day, in fact no pain at all.
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Seek... any news? How's the Flagyl treating you?
Hope you're okay.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
Also.. You may be able to go the herbal route by purchasing the herbs on your own. Probably much cheaper!
and.. It DOES sound an awful like a babesia herx was part of the problem.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Hey everyone. Thanks for the concern. I'm doing OK so far on the mega Flagyl dose, but of course I'm wondering if the storm is building and all hell will break loose. I've had some pains in places I don't normally have like my knees. I also have had dry heaves again too. Sick of it.
I'm only two days into the Flagyl though. I'm no fool. I don't speak too soon about handling things anymore. lol.
Good news is my 2nd C-Diff test came back negative again. My stool (TMI) is back to normal! I'm starting to question myself as to what happened (C-Diff, Virus, herx from hell, etc.). Could you really herx so hard on Plaquenil though? Even Mepron/Malarone didn't do that. I know Biaxin isn't powerful enough for that.
I'm at a tough point here. I feel like I may be chasing ghosts and there's no way out. i get more frustrated by the day. If I don't see a major reaction from high-dose Flagyl in 10 days, I may call the Lyme issue a day honestly. It's illogical to believe Lyme no matter what Igenex states on paper if one who hasn't taken a cyst buster ever doesn't react majorly after being infected since at least '07 and maybe 12+ years, right?
It may be time to go herbal or something different soon and go after Babesia/parasites with a vengeance. It's my ONLY lab test highly positive even though I sure wish it was IgM and not IgG under Focus Labs. They strangely don't offer an IgM test. Hopefully the test isn't BS to begin with.
This whole disease SUCKS. If I had more money, I'd consider some of GiGI's ideas like AI therapy.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Glad you're surviving. Here's hoping the massive herx train doesn't make a stop at your house this evening.
Then again, maybe a herx would be some confirmation.
C Diff testing is not infallible, so don't lay off the flagyl - finish it out. Don't want to mess around with C Diff if you can possibly avoid it.
Oh - and plaquenil. Yikes. I got such an intense reaction from that med - my LLMD pulled me off it. It was a killer. So yes, you could have a great big, ugly herx from that one.
Glad the GI stuff is improving!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Oh - and if you haven't already, google C Diff Support - there is a great C Diff forum out there.
If you have questions about testing reliability, treating, symptoms, etc - they can definitely help you out.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
It sounds like c diff and yes tests can be inaccurate. Sounds like flagyl is fixing you up.
I had no success with vanco for c diff, had to be flagyl.
Good news, it is a cyst buster. I'm on it with IV Vanco since i can't take much else due to c diff. Don't fret, there are other good options for treatment.
And...there is currently a vaccine for c diff in phase 2 clinical trials. if it's approved, that will be our ticket to freedom! It renders the bacteria that causes the toxins incappacited. So, we will essentially be cured of c diff!
And, some anti-parasitics that can treat babs are not bothersome for c diff.
Posts: 1104 | From N.California | Registered: Jan 2008
| 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!
![[Frown]](frown.gif)
Luckily, I can get lab results myself from my hospital w/o needing the doctor. I was negative for C-Diff and no parasites/ova seen.
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic