My daughter is half way through week three of IV rocephin. No herx yet, but her GI sx are getting worse. Could this be a herx?
She has gastroparesis or "Bell's Palsy of the gut" and I suspect an ulcer from meds sitting in her stomach for 6+ hours.
The pain became severe right before starting IV rocephin, is increasing where the esophagus meets the stomach and where the stomach is, right below the ribs. It is a burning and stabbing pain.
When she recently had severe stomach pain her GI not llmd's nurse sent us to the ER. We left with a dx of possible stomach flu! (That has lasted for months and just now increased to a 9 pain level-- yeah right) Basically, you're not dying, go home and follow up with your dr.
Have appt at End of month, trying to get it moved up! I worry about taking all the oral meds with gastroparesis. Her stomach hurts to walk and eat.
Anyone else have problems like this?
Thanks, MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Someone I know used to use that stuff Rejuvelac (sp?)with her daughter because she got bad stomach pains on abx and it worked for her. Stuff tastes NASTY!!!! I tried it once, yuck, but it helped her-!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I also suffer from Gastroparesis (Stomach Paralysis or "Bells Palsy of the Gut). And, mine is very severe. I vomit at least 15-20 times a day, and I cannot eat or drink anything by mouth. I had to have a J-tube (Feeding Tube) put into my intestines so I could get nutrition and medications, Since I am so thin due to the Gastroparesis and the overall effects of the disease process, I'm also on TPN via my PICC line.
I'm very surprised your daughter can take pills orally. Can she eat? (Without vomitting, I mean.)
I am now allergic to IV Rocephin, but I was on it for a good amount of time---around 6 months. It did make my GI symptoms worsen, but it is so hard to tell since all of my symptoms are out of control anyway.
Has your daughter had the Stomach Emptying Tests/Scans, EMG of the Gut w/ Endoscopy...etc..and all those lovely tests for Gastroparesis?
There IS a Lyme literate Gastro. And he does phone consults, email consults..etc. He is only an hour away from where I live, so I went to see him...He told me my case was the worst he'd seen in 20 years But, he was able to reccommend some medication combinations that did help me out for a while. If you want his info. you can send me a PM.
Definitely contact your daughters LLMD and all other doctors on her "team" if symptoms are becoming out of hand.
Do you have her on 24/7 IV Hydration of any kind? I know that helps me a lot.
I hope your daughter feels better Posts: 29 | From New York | Registered: Aug 2007
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
With all due respect MammaK,
Is there something wrong with YOUR thinking?
If your daughter is experiencing pain level 9....
Why are'nt you in the ER!
If it were MY daughter I sure would be....even though I know how ER folks treat Lymies....
Just don't mention the word! Just tell the ER folks that your daughter has an IV in to treat a resistant persistant unknown bacteria!
Come on now....LEVEL 9 Pain in anyone is BAD!
Much more serious in a child!
Plus NO, I never experienced any gastric issues like the ones you describe(PAIN WISE) as a result of IV ANYTHING!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Tony, that may be her usual!!! I was having pain level 10 for over a year- so unless you know the whole story...*)!! From what she has posted before she is an ultra-conscientious parent*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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My daughter will be 19 next week, but too much brain fog and pain to be in charge of her health.
Cali-lyme- is rejuvelac Rx or OTC? Thanks for the suggestion!
Tony Z, yes we recently were in the ER b/c of this pain, and told to follow up w/ GI dr. I spoke to the GI nurse again yesterday. I also faxed the "Bell's Palsy of the Gut" article to her GI dr. They are trying, just not llmd.
You are right about ER and lymies. Been sent home from ER with still a 9 or 10 pain level before!
I had heard others post about a week three herx on IV rocephin and wondered if anyone had a GI herx. Hoped taking abx IV would spare some of the pain.
JRachel - So glad to hear from someone w/ lyme gastroparesis. How long have you had it? It is a relatively new diagnosis for us, although GI involvement before.
Yes, had all those tests. Not able to eat much, guess about like someone with recent gastric bypass surgery. Hope some meds can help it from getting worse.
Difficult to take oral meds, but still toughing it out. I'm afraid they are causing damage though.
Look for PM about lyme literate gastro! We definate need more input here!
Thanks everyone!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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JRachel - So glad to hear from someone w/ lyme gastroparesis. How long have you had it?.....
MommaK
Hi MommaK,
I've had Gastroparesis for a pretty long time...at least 1.5-2 years. My case and history of Lyme is a long one---A lot of misdiagnosis' and ultimeately it has led to total disability. I've been unable to move my legs or walk for years now, My Lyme has become a demeylinating condition (Like MS), I have the feeding tube in because I am unable to eat due to Gastroparesis, I also have developed a severe Seizure disorder from Lyme, Narcolepsy....a Lot of really serious stuff.
I hate that your daughter is struggling through this too It's just horrible. The good news is that IV Rocephin DID help me (Until the LLMD who was giving it to me got "scared" and backed off, told me I was too severe...and I started relapsing and declining again). I'm now back on IV---this time Vancomycin, and it's a very slowwww process, I'm not noticing any improvement, I'm also on IVIG, tons of IV meds and 24/7 hydration---which is definitely something your daughter should be on if shes not getting a lot of liquids..etc.
Do the oral meds that she is taking come in a liquid form?? That might be easier on her stomach. I know at one point, before my Gastroparesis diagnosis, I was vomitting up full pills and capsules and not getting any of my medications at all. It got very bad, very fast.
I'll watch for your PM. Is your daughters LLMD well educated on GI Lyme? My mom called Dr. V.S at one point (the one who wrote the Bell's palsy of the Gut article).....so, that could be another option for you too.
I Hope she feels better !
Posts: 29 | From New York | Registered: Aug 2007
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But, he was able to reccommend some medication combinations that did help me out for a while. If you want his info. you can send me a PM.
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