My immune system is no longer............. My LLMD is out of town; my primary does not have or want to make an opening for me; emergency just stablized me and said "I had too many issues" and sent me on my way. Everything I touch, inhale, or eat gives an allergic response. I went on immediate detox on my own with the help of the Net, but need input from those that have recovered. I am down to basics: drinking water, and eating vegetables, sticking basically to fish and chicken. No fruits, juices or anything prepared with flour. Nothing with preservatives or additives.
I am walking around with a mask, wear gloves to safely remove synthetics and plastics, wear cotton everything and have to find shampoo, soap, lotion that is natural. I feel overwhelmed and don't know where to turn for help. I cannot afford to redo my whole house, but am able to survive right now sitting on leather chairs and sleeping in cotton sheets. I think I have systemic Candidias; either Celiac or Leaky Gut. At least I am managing without vomiting, but I have my Epipen handy because I have breathing problems with quick pulse. Do I check with an immunologist, a gastroenterologist, or what would be my immediate stabelizer? Any help would be greatly appreciated.
Posted by lymie tony z (Member # 5130) on :
Did ER recommend a six shooter?
NOW REALLY....
Go back to the ER...a different one this time and do not....I REPEAT DO NOT....MENTION ANY OF YOUR ISSUES!@
Just lay there and let them figure it out!
Perhaps you're not as bad as all that!
They hate like hell doing anything to anyone who tells them that they have all these "ISSUES"!
Trust me on this one....the more you open your mouth the faster they back away from you and send you on your way....
LET THEM FEEL GOOD BY BEING DOCTORS....you may be surprised!
zman
Posted by Lymetoo (Member # 743) on :
Have you contacted your LLMD?
Posted by AliG (Member # 9734) on :
Breaking up for neuro-lymies to read:
quote:Originally posted by herbalfrog:
My immune system is no longer.............
My LLMD is out of town; my primary does not have or want to make an opening for me; emergency just stablized me and said "I had too many issues" and sent me on my way.
Everything I touch, inhale, or eat gives an allergic response.
I went on immediate detox on my own with the help of the Net, but need input from those that have recovered.
I am down to basics: drinking water, and eating vegetables, sticking basically to fish and chicken.
No fruits, juices or anything prepared with flour. Nothing with preservatives or additives.
I am walking around with a mask, wear gloves to safely remove synthetics and plastics, wear cotton everything and have to find shampoo, soap, lotion that is natural.
I feel overwhelmed and don't know where to turn for help. I cannot afford to redo my whole house, but am able to survive right now sitting on leather chairs and sleeping in cotton sheets.
I think I have systemic Candidias; either Celiac or Leaky Gut.
At least I am managing without vomiting, but I have my Epipen handy because I have breathing problems with quick pulse.
Do I check with an immunologist, a gastroenterologist, or what would be my immediate stabelizer?
Any help would be greatly appreciated.
Posted by AliG (Member # 9734) on :
quote:Originally posted by herbalfrog:
emergency just stablized me and said "I had too many issues" and sent me on my way.
what would be my immediate stabelizer?
You want to know an immediate stabilizer, but you said you were stabilized.
I find this confusing.
Posted by herbalfrog (Member # 12711) on :
My LLMD is out of town until the 15th; emergency stabelized me by hydration and medication per IV. I always carry my list with diagnosis, allergens and meds. to give them an instant picture. I am allergic to 8 different antibiotics and other meds; why take a chance? The hospital had an infectious disease specialist on staff, so I thought I would get the necessary attention.
I have been dealing with my Lyme's perfectly well for ten years, but have had problems with absorption and elimination. Neuropathy is bad and I need to frequently self cath as I no longer have sensation down there and become hyperreflexic. Now I have problems with my bowels; had a colonoscopy and endoscopy, but even though the results were inflammation and E-Pylori, I was not given any instructions except to take my Prilosec and Pepcid.
All of a sudden I have trouble keeping anything down; am nauseated, vomit, am constipated and have fatty stools, while I react to plastics, synthetics, foods, and liquids and whatever else. I think I qualify for some helpful advice and care.
Posted by sixgoofykids (Member # 11141) on :
From the Mayo Clinic website regarding H Pylori:
quote: Symptoms
An ache or burning pain in your abdomen A change in appetite with weight loss Nausea Vomiting Frequent burping Bloating Bloody vomit or vomit that looks like coffee grounds Bloody or black tarry stools
Disorders associated with H. pylori infection
It's not entirely clear why some people with H. pylori infection remain apparently healthy and some develop digestive system disorders. It's also unclear why some people exhibit milder disorders and others more severe disorders. Factors that may make a difference include varying degrees of virulence in different strains of H. pylori and genetic factors that may make some people more vulnerable to one of the following H. pylori-related disorders:
Stomach and duodenal ulcers are open sores in the lining of your stomach or the first part of the small intestine (duodenum). H. pylori infection causes the majority of these ulcers. The most common sign of an ulcer is a frequent burning pain in your abdomen. The pain occurs most often when your stomach is empty and may last only a few minutes or several hours.
Gastritis is inflammation of your stomach's lining. While signs and symptoms are often similar to those of ulcers, you may have gastritis with no apparent problems at first. H. pylori infection can cause a chronic inflammatory response that over time damages the lining of your stomach and results in the loss of acid-producing glands in your stomach. These changes can increase your risk of developing stomach cancer.
Stomach cancer is a disease in which abnormal cells in your stomach divide without control. H. pylori infection is a strong risk factor for certain types of stomach cancer. Most signs and symptoms occur only after the cancer is fairly well advanced. Additional problems associated with cancer may include a bloated or full feeling after a very small meal, difficulty swallowing, breath odor, excessive gas or a general decline in health.
Gastric mucosa-associated lymphoid tissue (MALT) lymphoma is the development of a cancerous tumor from white blood cells (lymphocytes) in the lining of your stomach. H. pylori infection greatly increases your risk of gastric MALT lymphoma, and nearly all people with the disease are infected with this bacterium. Nonulcer dyspepsia is stomach pain or discomfort not caused by an ulcer or another identifiable disorder that would result in the pain. The relationship between H. pylori infection and nonulcer dyspepsia isn't clear.
Posted by seibertneurolyme (Member # 6416) on :
If you had an endoscopy and colonoscopy and an h-pylori test (was it a biopsy speciman or breath test?) -- why did the G.I. doc not prescribe meds for the h-pylori?
Any G.I. doc knows that the standard of treatment for h-pylori is a triple cocktail -- bismuth, an antacid and an antibiotic. Don't see the bismuth on your list of meds?
Sounds like you have made the necessary changes in diet to improve your health.
Are you taking probiotics?
Things you can try on your own which may help -- go slow and add one thing at a time -- activated charcoal or bentonite clay or apple pectin fiber.
To kill pathogens -- olive leaf extract, oregano capsules or goldenseal capsules.
One prescription med that might be helpful would be Xifaxan.
Read the article -- Bell's Palsy of the Gut.
For histamine type reactions to food -- hubby's LLMD just suggested he add Quercetin -- doc says that supplement is hard to absorb though and the brand is very important.
Good luck.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
herbal?? Are you OK??
Posted by herbalfrog (Member # 12711) on :
Bea and Sixgoofykids, Thank you so much for reaching out and for all the info.
Yes, I had a biopsy, which was negative. No, I did not get prescribed anything, but was sent on my way. The ONLY reason that I still keep in contact with his office is because this primary is willing to follow protocol of my LLMD. It took me one and a half year of " No, I don't treat Lyme" before I found a local practioner. Even though he has lots of diplomas, does not mean he should be practising as he is rude, did not speak before or during the colonoscopy and endoscopy except to say "turn over" and "open your mouth". I did not get an IV nor medication to make me comfortable; instead I was in plenty of pain then and up to three days after.
The symptoms of H-Pylori match the ones given to me by Sixgoofykids. I will contact a gastroenterologist and see if they can work me in ASAP. I will immediately start on acquiring the supplements you are suggesting. If I cannot see anyone I will go to a different hospital, which is within 45 minutes drive. Right now I am concerned about diet as everything I have tried so far except plain lettuce and celery is giving me a histamine response. I was able to tolerate chicken yesterday, but it was a no-go tonight. I got a reaction from the Pedialite I had my husband buy, thinking that my electrolytes might need a boost.
At least, thanks to your help, I have a plan of action and even though we are miles away from each other....that lifeline is there!
I am very weak, have lost 18 lbs and need a good dietician to help me with my diet. I am not craving foods right now, but am looking for the only comfortable place: my bed.
Thank you gardian angels.
Posted by luvs2ride (Member # 8090) on :
Herbal,
You are on the right path when you consider the possibility of Leaky Gut.
Find a medical doctor who believes in leaky gut and is trained in healing the gut. There is no medicine you can take for leaky gut and many doctors don't even believe in it.
Your post really jumped out at me and to be quite honest, I didn't finish reading it because this jumped into my head"
LEAKY GUT, LEAKY GUT, LEAKY GUT.
Been there, done that. I was the same as you my dear. I couldn't eat ANYTHING. Even water gave me the same reactions. it basically got to the point that water was giving me the same reaction as eating a salad, OR taking 3000 mg of augmentin.
It took me 18 months of NO antibiotics to get a diagnosis. That should have come alot quicker. I was actually medically diagnosed with intestinal permiability, not holistically or anything- thats just how bad it was.
There was a powder that I used to overcome my leaky gut. It took me about a year on it to get better. Only now is it starting to rear its ugly head once again, but this time I know what to do about it.
I would say- lean towards leaky gut syndrome. I was in worse shape with that then ever.
Posted by sixgoofykids (Member # 11141) on :
Yes, I had terrible leaky gut, too. Any solid food made me sick. I lived on whey protein shakes and almond butter!
From what I can tell, H Pylori needs treatment, don't ignore it. I think you're on the right track getting that checked out.
Posted by luvs2ride (Member # 8090) on :
Yes. You can't heal your gut as long as you have H. Pylori
Posted by cactus (Member # 7347) on :
I'm sorry you're going through this, and ditto to everything above regarding Leaky Gut and H. Pylori.
One extra thought for you - if you have a history of allergies (as it seems you do, since you have an Epipen & allergies to meds), can you call your allergist?
If contact with most everything in your home is causing breathing issues & a quick pulse, and you are keeping your Epipen very close out of fear of anaphylaxis, it sounds like your allergist may be able to help pinpoint the cause as well, if you have developed new allergies.
Hoping that you begin to feel better soon...
Posted by lymie tony z (Member # 5130) on :
Looks like you got alot of good advice there!
Don't forget that H-pylori can be crossreferenced with lyme disease. I personally get that back positive all the time....even though I have taken the 14day cure, and have NO MORE heartburn....
I do have inflamation of the stomach and probably palsey of the gut....but the gastro only told me(after I told him) that I had gastritis...
no explanation or plan to erradicate it except the lousey pills you're taking at present...which I don't understand....the combination of the two should probably never be used....
That simple thing could be your whole problem in a nutshell....
However...like I said....whenever you go in to the next ER....be quiet...let them be doctors for a change....
zman
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by herbalfrog: did not speak before or during the colonoscopy and endoscopy except to say "turn over" and "open your mouth". I did not get an IV nor medication to make me comfortable; instead I was in plenty of pain then and up to three days after.
That is inhumane!!! ( not to mention stupid! ) What a jerk.
![[confused]](graemlins/confused.gif)