So my child who is now 18 years old has had severe abdominal pain for several months now.
He has lost over 25 pounds taking him from 125 to 96 pounds. He says his abdominal area feels like he has glass in it.
It feels hot. He has had problems in the past with acid reflux and "belly button" pain.
He was diagnosed at age 3 with Lyme Disease and was treated for coinfections(Ehrlichia, Babesia and Bartonella).
He has had an MRI of his abdomen and now an upper and lower GI. Everything was normal.
The only medicine that we can find that helps at all is Benadryl, but he has to take A LOT of it.
And then it only helps slightly. He also has the feeling of passing out several times a day.
He needs to run his hands under cold water. He gets the narrowing vision and spots and can't hear well when this is happening.
He has a very low blood pressure most of the time. I am at a loss with what to do next to help him.
Any thoughts? Thank you in advance!
Posted by Rumigirl (Member # 15091) on :
Oh, good grief, that sounds terrible!!
It sounds like he should see a top-notch Lyme doctor soon. I'm not saying that that is the cause, but since he's had the tests that he has, that would be a good way to go, among other things.
On the upper left of the Lymenet home page, there is a link to local Lyme Support Groups, so you can get advice about who to see. You can also post about finding a lyme doctor on Lymenet under "Find a Doctor." Put the states/areas that you are able to travel to in the subject line.
You could also ask in both places for a Lyme-Literate or Lyme-friendly GI doctor, as Lyme and co-infections can create all kinds of GI problems. I assume that he's seen a GI doctor.
The huge weight loss is extremely concerning. Can he not eat much? Of course, it's all concerning.
There's more, like about his low BP, but that is often something that Lyme doctors treat, because it's common with Lyme. If not, a Lyme-aware cardiologist would treat that part. You could ask about that, too.
Keep us posted! There will be other responses for sure.
Posted by Lymetoo (Member # 743) on :
Rumigi we are seeing a LLMD for treatment. Lymetoo this is something I have been reading about. It seems to fit. Thanks for the information!
Posted by Keebler (Member # 12673) on :
- Is he gluten-free? And that can be tricky as many things labeled gluten free are not actually safe. -
Posted by Keebler (Member # 12673) on :
- Just stumbled upon this while attempting to "leisure" read:
Wire-bristle BBQ brush incident reports more than double
'What will it take — a death?' Surgeon urges Health Canada ban on wire brushes
By Katie Nicholson, Vera-Lynn Kubinec, CBC News Posted: Oct 15, 2017
A Health Canada risk-assessment report found the number of reported incidents of bristles coming off a grill-cleaning brush has climbed to 40. In 28 of those cases, a person was injured after ingesting a wire bristle.
A surgeon who has had to treat patients injured after swallowing wire bristles from a barbecue brush says Health Canada should be moving more quickly to take the brushes off the market. . . .
. . . Canadian surgeons urge people to throw out bristle BBQ brushes . . . A wire bristle that travelled all the way through stomach, and perforated a patient's small bowel. . . .
[Full article at link above.] -
Posted by HW88 (Member # 48309) on :
I'm so sorry. Stomach issues are So SO hard! I had gastroparesis which caused a lot of nausea and pain.
It has gotten a lot better with lyme treatment.
Find a good LLMD if you don't have one.
Keebler, I like your 'leisure' reading! Posted by orrn71 (Member # 50137) on :
Keebler he has been experimenting with food and knows some things that don't hurt his stomach as much.
That info about the wire bristle brushes is scary.
HW88 We do have a LLMD, but they don't seem to have connections to other doctors(specialties).
Posted by Rumigirl (Member # 15091) on :
Lymetoo, You know everything by now!! Or so it seems. Lots of long-term experience.
I need to look into it myself, I'm sure, but I'm full up with what I can deal with right now---and then some.
Posted by Lymetoo (Member # 743) on :
Sadly .. too much experience over here!
orrn .. Many with Lyme end up with MCAD .. or it was MCAD complicated by Lyme.
Posted by Keebler (Member # 12673) on :
Many great links here -
Posted by BobG (Member # 39642) on :
Pepto bismo helps for some and attacks the lyme organism. YOu should not take it continuously for long periods of time. I would read and understand this. If it helps, I would stop and when symptoms return, use it again.
Posted by Robin123 (Member # 9197) on :
A supplement that I have found to be very helpful for digestive tract issues is drinking mangosteen juice, an anti-inflammatory juice with 43 xanthone compounds in it that neutralize free radicals.
I drink the Mango-Xan version as it's the most tart. Found in healthfood stores and online. I drink an oz/day.
We're all different when it comes to what we respond to.
Posted by sixgoofykids (Member # 11141) on :
Some of my food allergies will leave me holding my gut and nearly crying on the couch. Maybe do a rotation diet to see if there's a specific food causing it.
For me, it's MSG under any form. Yeast extract is the version many so called health foods contain. Kettle potato chips are terrible for yeast extract .... I've even gotten the stomach cramps from their sea salt version from contaminated lines (they tasted slightly like sour cream and onion).
I also get this from pecans, mustard, and shellfish. With the variety of things that leave me this way, it was difficult to find out what it was. My peanut allergy affects me completely differently.
Since Benadryl helps, I'd really suspect a food allergy. It's not always hives. Most of my food allergies are a terrible stomach ache. These are things I tested IgE postive for, so I know it's allergy related.
I also had great benefit from parasite cleanses. I did several. Two of my favorites are Humaworm and Paraguard. I tested negative for parasites, but gained 10 pounds once I did the cleanse and actually saw passed parasites/worms.
I hope you figure it out soon!
Posted by Lyme248 (Member # 51011) on :
I had severe stomach pain after eating that got better after I took antibiotics for Bartonella. The only thing that even helped slightly was ginger and turmeric.
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