posted
Ugh.. so nauseous.. all the time. Any advice? Mornings and nights seem to be the worst most of the time.. but sometimes it goes all day.
I have tried ginger tea, a few prescription meds, lavender oil...
Nothing seems to really cut through to it. Blegh.
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Keebler
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- Ginger tea does not have the desired therapeutic dose of ginger that you will find in ginger CAPSULES.
Magnesium can help but so can liver support (as nausea can be a result of a stressed liver or gallbladder). And, if from liver stress, some Rx can make that worse.
==================================
Porphyria should be considered, too. If connected, very specific liver support can help:
GINGER - From University of Maryland Medical Center
Excerpt:
. . How to Take It:
Pediatric
Ginger should not be used by children under 2 years of age. Ginger may be used by children over 2 years of age to treat nausea, digestive cramping, and headaches. Adjust the recommended adult dose to account for the child's weight.
Most herbal dosages for adults are calculated on the basis of a 150 lb (70 kg) adult. Therefore, if the child weighs 50 lb (20 - 25 kg), the appropriate dose of ginger for this child would be 1/3 of the adult dosage. . . .
=========================
From: The One Earth Herbal Sourcebook (Tillotson, et.al.)
WHAT IT DOES: Ginger root is pungent in taste, and warming, and mildly tonic in action. It improves digestion, reduces nausea and mucus, settles the stomach, and reduces inflammation.
SAFETY ISSUES: Ginger may increase absorption of pharmceuticals, and may irritate the stomach in sensitive individuals or those with severe acid reflux problems.
STARTING DOSAGE:
* Dried powder [as capsule]: 500-1500 mg one to three times per day
* Tea: drink freely . . .
* Because of its digestive and anti-nausea actions, ginger can be used to treat dyspepsia, nausea and vomiting associated with pregnancy, vertigo, dizziness and motion sickness (Schmid et al., 1994; Visalyaputra et al., 1998). . . .
. . . Ginger acts as a digestive aid as well as a peripheral blood circulation stimulant, so it is useful for increasing poor circulation. Its pungent essential oils aid digestion by stimulating the activity of digestive enzymes (Platel K et al., 1998).
However, despite its hot spicy taste, ginger inhibits the synthesis of the ``bad-guy'' inflammatory chemicals, prostaglandin and thromboxane (Kiuchi et al., 1992).
TCM doctors tell us that fresh ginger is better than dry ginger for easing nausea, mucus, indigestion and stomach pain, and for stopping diarrhea caused by poor digestion. Conversely, they tell us dry ginger is better for warming the body.
The anti-inflammatory actions of ginger, noted centuries ago by TAM doctors, are strong enough to reduce muscular discomfort and pain in osteoarthritis and rheumatoid arthritis (Srivastava et al., 1992). . . .
HOMEOPATHIC remedies (pellets under the tongue) are also helpful. Nux-vomica never worked so well for me, but others say it helps them. Tabucum and Cocculus, together, have kept my stomach contents from showering air travelers - and it can have an immediate effect. Boiron is the brand I used but there are a couple other good brands.
Nux-vomica
Tabacum 30 c
Cocculus Indicus 30 c
==================
ACUPUNCTURE / ACUPRESSURE can help - but also having an acupuncturist teach you how to do it yourself as needed - and also teaching you acupressure on the wrist points. It was never enough for me, though - not by a long shot.
When I fly, I take both Ginger Capsules for prevention and then, if there is a disturbance of my inner universe, the homeopathics as needed.
As for taking Ginger besides to help when flying, it also helps reduce nausea and also is wonderful for a pain reducer and anti-inflammatory agent. I think it may also help lessen herx effects.
You might ask your LLMD about it.
YouTube has many videos on acupressure to relieve nausea. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Is you nausea a symptom of the disease or is it being caused by antibiotics/other meds?
Is the nausea associated with meals? Do you have any pain?
Nausea has been my most debilitating symptom and I have researched and been tested for I believe every known medical cause for nausea so depending, I may be able to offer you some help.
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Keebler
Honored Contributor (25K+ posts)
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- Lyme/TBD can really clobber the inner/middle ear (vestibular system):
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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For me, it seems, nausea is part of the Lyme.. not necessarily the treatment since it was present way before treatment started. I can't imagine the meds help...
The nausea does seem worse after eating, but it's often just there when I wake up in the morning.
I have high blood porphyrins but no doc understands what this means or if it is related to lyme.
Nausea is a terrible symptom, definitely keeps me from doing some of the things I would like to do.
KS- any thoughts?
Posts: 341 | From NY/FL | Registered: Apr 2010
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Keebler
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- High blood porphyrins can cause all kinds of GI tract problems, including nausea.
Yes, lyme will make any kind of porphyria worse - any infection can. But so can some of the the meds to treat it. it's a very tricky dance.
I hope you are attending to that. Beta Carotene is excellent. Some carrot and greens juice with a bit of ginger for your breakfast drink should help. Then, several times a day, greens, carrots and or greens drink. Very important to help keep the porphyrins down.
More details in the Porphyria link a few posts above. -
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I saw a hematologist (non-lyme literate) last year about the porphyrins. He said I did not have porphyria. He tested stool and urine.
I am wondering if I brought this to my LLMDs attention if he would have any idea what I was talking about. I tried to ask my LLMD in NY and he had no idea.
I will be seeing a LLMD in Florida on Friday for the first time. HELP!
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posted
Just sharing my experience, for what it is worth, I spoke with a MD (one of the kindest, most empathetic doctors I've met with) who specializes only in treating people with porphyria. He was confident that chronic, intractable nausea was not caused by this condition.
I'm not sure what tests you've had done or what your history/other symptoms are but hopefully you have at least had an upper endoscopy (including evaluation for celiac disease),an abdominal CT and a brain MRI to rule out a host of possible causes. Assuming you've had these done, my next steps would be:
Given your nausea has some association with meals, it is reasonable to explore gastroparesis by having a gastric emptying study done.
Have your gallbladder function checked by doing a HIDA Scan.
Make sure you have a full endocrine work-up including having your cortisol levels checked (in the morning).
Does your nausea come from a queasy feeling in your belly or is it just that sensation in your throat? For me, it is just in the throat....
Anyway, some 'food for thought' for you! I have other remote possibilities for causes for chronic nausea but don't want to overload you. I totally appreciate what it is like living life with nausea. When I was at my sickest, I literally couldn't function/eat/drink and it was horrific. After 20 months of antibiotic treatment, the nausea is MUCH better but it is still with me.
As you know, there are a host of anti-nausea meds available to hopefully offer you some relief while you continue to treat or to search for answers. Assuming you've tried the tradtional meds (i.e. phenergan, zofran, etc.) some 'outside the box' anti-nausea meds are things like amitryptiline or ativan. One med I would highly suggest you stay away from if you can is Reglan...
Keebler
Honored Contributor (25K+ posts)
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posted
- If porphyria is chronic, nausea can be involved. Most doctors see porphyria as quiet with no symptoms until a big attack. However, a few doctors who treat porphyria recognize it in a chronic state. Mine was one of those few.
But, just now with a Google search, I see the chronic state is getting more recognition. Here's just one link from that search:
. . . Taylor and his associates 14 recently observed a woman with chronic porphyria exhibiting photosensitivity with abdominal pain, nausea and vomiting. . . . ---------------------------
The "Secondary Porphyria" post at the Porphyria thread discusses other symptoms that are involved with a chronic state of elevated porphyrins.
Also of note, with a chronic porphyria, the levels of porphyrins do not register as high as doctors are used to seeing with an outright acute porphyria attack. Some tests can be discounted if they are not blasting off the chart.
Regarding testing - renny, you said: " tested stool and urine."
Blood also needs to be tested. Even then, unless a person has elevated porphyrins at the time of the test, it will not register. So, many cases can be missed that way. It's only when a C P-450 Rx tips the scales that it can become more pronounced.
There is a genetic test now but that, too, has limitations.
More likely, though, would be GLUTEN or a a VESTIBULAR connection &/or the on-going liver stress from lyme.
A stressed liver will cause nausea. And lyme causes a stressed liver.
Due to how harsh many drugs can be on the liver. I thinks its best to work with natural products. Ginger has a remarkable track record and even outshines many Rx. PubMed has many medical abstracts comparing them.
Still, be sure to tell your LLMD. It could be something else. -
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Keebler
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- DGL, Slippery Elm, (from the plant, not the fluffy confection) Marshmallow Root. And Gum Mastic.
A gluten-free diet is also very helpful. If that helps, you may want to be assessed for celiac. Celiac can be genetic or acquired, especially with certain infections that can cause it. Many LLMDs want their patients to be gluten-free until remission is achieved for at least a couple months, at which time, that can be reassessed.
Deglycyrrhizinated Licorice, also known as de-glycyrrhizinated licorice, or commonly referred to by the acronym DGL, is typically used as an herbal supplement in the treatment of gastric and duodenal ulcers. It is made from licorice from which the glycyrrhizin has been removed.
The usual dosage is 760 mg, chewed, 20 minutes before a meal. Studies of DGL in humans and animals against placebos showed that DGL significantly reduced the size of gastric ulcers and hastened healing, with 44% of the subjects obtaining complete healing, as opposed to 6% of the control group.
DGL has also been found to be an effective treatment for duodenal ulcers. In another study a group of 40 patients who had duodenal ulcers for 4-12 years were treated with 3 grams of DGL a day for 8 weeks, or 4.5 grams a day for 12 weeks, with all subjects showing vast improvement, with the higher dosage being the most significant.
An additional study shows that DGL's therapeutic effect is equal to the effect of cimetidine (Tagamet). . . .
. . . There are no known drug interactions with drugs used to treat ulcers. In Europe, South Africa, and Canada, DGL is marketed in a medicinal preparation called Caved-S. In the U.S., DGL is marketed as a herbal supplement.
DGL has also been reported to help treat aphthous ulcers (canker sores).[1]
WHAT IT DOES: Licorice root is sweet in taste and cooling in action. It detoxifies poisons from the blood and liver, and reduces general inflammation and pain.
It moistens and heals the lungs and digestive tract.
Excerpt:
. . . Almost 50 years ago, a scientist by the name of Revers reported that licorice paste reduced abdominal symptoms and caused radiographic evidence of ulcer healing.
However, about 20% of patients developed edema, headache and other symptoms due to overdose, leading to a loss of enthusiasm (Schambelan, 1994).
This led to the development of DGL (deglycyrrhizinated licorice), a form of licorice that does not contain the agents responsible for the side effects such as electrolyte changes.
The de-acidified DGL tablet or capsule form used in Europe and America is therefore devoid of any major side effects, and is effective for healing the intestinal membranes. . . .
- Full chapter at link above.
-=============
Just is just one of several similar products out there. DGL has saved the life of my stomach and can stop reflux within a minute.
A list of various brands of DGL (Deglycyrrhizinated Licorice) - many are chewable so they will soothe the esophagus and cool reflux.
=====================
If CANDIDA is causing the pain, in addition to PROBIOTICS, I have found OLE (Olive Leaf Extract) to be fabulous to help heal the gut from fungal issues. -
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Keebler
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- Reading a post by Gael, I was reminded of the - uh word choice is gone - uh - importance (?) of parasites.
they can cause nausea and are sorely overlooked as a cause. Parasites also seem to be getting more attention from LLMDs and those with lyme to attend to this matter do better with treatment.
Search the directory link above for for posts by Gael -- listed as: glm1111 Member # 16556
Also check posts by GiGi. Most of hers deal with heavy metals but a few detail parasites and Dr. K's work in this area.
Some do the Salt/C protocol but that is not for everyone. There are several ways to approach this.
First, start with Gael and GiGi's posts and then talk to your LLMD. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Ahhh so overwhelming with so many possible causes and treatments. I will mention this all to my new LLMD on Friday.
Keebler- I had my stool and urine tested following a blood test that showed high blood porphyrins. I dont believe the stool and urine tests were done properly. I had very little faith in my docs as they didnt seem to know **** about porphyria.
I have always felt that porphyria could explain many of my symptoms, as my WORST symptoms are GI pain, nausea and leg pain. I also have some crazy heart palps, blocks etc.
Thank you everyone for your advice. KS- I have had a full GI workup- done several times over. I have not however had tests for gastric emptying and a HIDA scan. My nausea is very connected to abdominal pain and quesiness (less of a "throat" thing).
Parasites have been mentioned to me before on this site. I will ask my LLMD. I am worried about treating everything at once or not at all. I am just intimidated by this whole world of Lyme etc. I want to get better and I don't know where to start. I hope my LLMD does.
Keebler
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posted
- Be sure to take the blood tests with the high porphyrin detail to your LLMD. Also, make note of if a particular KIND of porphyria was indicated. Each test means something different and each kind of porphyria (over 11 kinds) has some differences.
One kind requires that you avoid sunlight. Others do not. But, you'd likely know if that had been the kind indicated from the specific kind of enzymes that were off for your tests.
And - most important - you may need to avoid medicines that use the Cytochrome P-450 liver detox pathway. OR - have very specific support if using those.
It's imperative to treat infection. Absolutely vital. It just needs to be done with specific support measures.
The Porphyria thread details some of that, especially Beta Carotene. A low carb diet can be very dangerous for someone with porphyria, too. But you can still be smart about how you get glucose that can save a life.
Yes, this is all overwhelming. Take what you know and your questions to your LLMD and let him or her guide you.
Oh, if you have porphyria, you should avoid lavender oil. Even though it's an essential oil, there is just something about lavender that can clobber those with MCS. Lemon oil works well for me, though.
I hope you are gluten free as that is very important to consider. VERY. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Hi, Thank you again. I am lookinh at the porphyrin blood test now. It seems the high value was for coproporphyrin (1.6). The range suggest values less than .8 are normal.
I will bring this to my LLMD, I just worry that he won't know anything about porphyria. Will he know that I need to avoid Cytochrome P-450? Is there some way of deciding if I do have porphyria? Is this blood level enough to suggest I need to be helped for porphyrins.
Ahhhh. Not gluten free at all . I have such bad GI problems that I am on a very restrictive inflammatory bowel diet. This includes pasta, bread, rice, potatoes, green beans, cooked carrots/mushrooms/string beans, cereal, soy products, certain fruits (no seeds), smooth peanut butter, etc.
I dont know how I could do gluten free and still eat? I also weigh 114 lbs and am 5'7". I fear cutting out carbs.
Keebler
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posted
- If you have GI problems, you will likely get better avoiding gluten.
you might also do a test run cutting out dairy, corn and soy, too.
This sounds harsh and mean but I can't believe a doctor has not already suggested this. Feeling better is worth it and I've been free of all those foods for over a dozen years and I'm not at all feeling deprived.
There is no need to cut out carbohydrates - vegetables are carbs. Just don't eat simple carbs except in an emergency. Glucose can save a life during a porphyria attack.
Non-gluten COMPLEX, WHOLE grains include: Amaranth, Buckwheat (really a legume), Millet, Quinoa, Red Quinoa,
Brown, Red, Black and Wild Rices
- Starting with regular Quinoa would be the best bet. Then Buckwheat and Millet. Those are the smoothest of them all. But any whole grain can be pureed to accommodate your GI needs. It then turns into less of a complex carb but find a doctor who can guide you with this.
Were you ever tested for Celiac?
Still, VEGETABLES need to be the mainstay of our diet. Legumes can be good, too, in moderation.
If you don't already have a hand blender, you may want to get one if you need to eat "baby food" consistency. Try to get a stainless steel one, not plastic. Hot foods should never be around plastic.
This can get better and my guess is it will start by avoiding gluten. I just have a hunch. I nearly died from gluten before I figured it out with the help of genetic tests when the doctor botched the biopsy.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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On ginger.....I know that some people (Hi Keebler) enjoy ginger as a relief for nausea. If it is right for you, it is a wonderful herb.
There are many people for whom ginger is not appropriate in any form: those with "hot" conditions, heat in the stomach, etc. If one has interstitial cystitis it can burn the urinary tract painfully.
According to Master Herbalist Peter Holmes in the two volume "The Energetics of Western Herbs": "(ginger root)....should be avoided in stomach and lung syndromes involving heat........Use with caution in formulas treating hot, dry or Yin-deficient conditions."
There is no one herb that is right for everyone for any symptom.
Peace and ease.....
Posts: 164 | From North America | Registered: Mar 2009
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I tried gluten free for two months once and it did nothing for me. I would be willing to try again. I have had multiple celiac tests and biopsies that didn't show celiac.
However, I did have some flattening of my vili in my intestines. GI docs generally dont deal with "outside of the box."
I was told by my dietician that quinoia and wild rices etc are hard on the digestive tract. Simple carbs like white flour pasta and bread are the easiest and best for people with inflammation.
Also was told that uncooked veggies are very hard to digest.. which is why I only eat the cooked carrots, mushrooms, green beans, beets, potatoes, sweet potatoes. That is about it for "allowed veggies".
IS gluten free for the porphyrins? the lyme? Im sorry to sound ignorant.. its just I am always being told a hundred different things from a hundred diff docs and people and I never know what's right.
I also have altered my life so significantly to get my diet to where it is today, that if I am going to make a change like gluten free I want to understand why.
Thank you for your help. I desperately want to not be sick.
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Keebler
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- Gluten free is for your stomach - and to lessen all pain in stomach and body - and for a clearer brain."
Most LLMDs want their patients to be gluten-free as it helps so much. Is that enough, alone, usually not. But, with treating infection it seems to help.
"Leaky Gut' is a big problem with lyme. Avoiding gluten, dairy, corn (and maybe soy) helps that heal.
If you start on antibiotics, the simple sugars for wheat will also feed candida/ yeast that can grow from antibiotic use. Lyme patients are also more likely to develop diabetes and the simple carbs are just a set-up for that.
Steamed veggies are easier to digest, just get them out of the pot before they loose their brilliant color.
Also to consider: dairy, corn and soy can cause all sorts of G.l. trouble, too.
Have you eaten Quinioa? It really turns to a bit of a mush. So do raw buckwheat groats.
You also need much more in the way of greens - you cannot possibly get the nutrients you need just from green beans.
Steamed chard is pretty easy to digest, especially in soup. Lightly steamed spinach, too. The red lentils are very easily digested but you could puree the green lentils, too.
You see your LLMD soon - ask advice there. -
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Keebler
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- You might ask your LLMD for someone to help with the diet issues, etc. If he does not know of anyone, here's a place to begin finding adjunct care. NDs and L.Ac.s are expert in nutritional medicine, too.
Topic: How to find a LL ND (naturopathic doctor), acupuncturist, etc.
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc.
THE CURE IS IN THE KITCHEN, by Sherry A. Rogers M.D., is the first book to ever spell out in detail what all those people ate day to day who cleared their incurable diseases . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Thank you for being patient and giving me all this advice. I agree with you about not getting enough nutrients. I have been doing spinach lately but it seems to give me terrible lower abdominal cramps.
I just cant seem to get it right. I am sick all the time and it is just so painful and not fun. I am willing to try ANYTHING to help myself to get better.
I will talk to the LLMD about gluten free and also about dieticians. I had a dietician in NY but recently moved to FL. Lentils is a good idea. I do eat pureed beans and hummus for protein as well. I eat NO dairy, no corn (not whole corn) - but I do have corn products. I am a vegetarian so eat a lot of soy for protein.
I have been a veg since I was 5.. way before all this illness started.
posted
My daughter is 13 and was recently diagnosed w/ lyme..we are seeing llmd...she is on flagile (not sure of the spelling)..she is very nauseous and throwing up...llmd said to go off all meds because her die off is too much...I am afraid we will loose ground...is it better to bite the bullet or give a rest? Any thoughts?
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. I have such bad GI problems that I am on a very restrictive inflammatory bowel diet. This includes pasta, bread, rice, potatoes, green beans, cooked carrots/mushrooms/string beans, cereal, soy products, certain fruits (no seeds), smooth peanut butter, etc.
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