I have not been on here in a long time because I was doing so well I was enjoying my life. Due to being so sensitive to medications I got well using natural treatments. The only bothersome symptoms I had left was some neuropathy in legs and some joint pain.
Then this past October I started having stomach problems with mild burning in stomach and a little acid reflux.
My lyme doctor (not a well known one but, someone who is well known in our city by the lyme comunnity and follows Burrascano protocols)tested me for H-Pylori and it came back borderline positive.
I was reluctant to treat due to the antibiotics and my sensitivities but decided to go along with it anyway.
I took Prilosec, Minocycline, and Flagl. Within two hours of taking this I had severe hot burning in my stomach and a pounding heart and also started geting very dizzy.
I countinued to take it until the next morning. Woke up feeling very ill. After my dose that morning, I started vomiting alot and could not stop all day. Could not even hold water down. Called doctor and told to stop taking meds.
I also was so weak I could barely get off my couch, very dizzy, really out of it, was shaking really bad like I had the chills and my butt was tingling. Also, I felt really heavy and if I picked up a glass of water it felt heavier then it should.
All this continued for about a week inluding complete insomnia, bad heart arrthmeias, bad acid reflux, severe nausea. I then slowy started to get a little better.
Only to take a bad downslide within a few weeks. Had to quit my job, stop driving, and I barely leave my house only to go to doctors appts and families houses who "babysit" me.
I continue to get worse. I have consulted several doctors. Lyme doctors in our city that are known by the local Lyme community, Naturopaths, specialists.
They all have different ideas about what my problem is and what to do about it. One says the antibiotics and Lyme die off poisened my mitrocondria,
one says, I have a detox problem and still suffering a herx 4 months later, another says mold (I had the DLA detox panel done and I have the mold gene), and one says it's my stomach issues causing a cascade of problems.
I currently have all the symptoms listed above in addition to trembling which started by coming and going but now is almost constant.
My arms, legs, neck and spine tremble whenever I use them to do anything. If I do use them the trembling gets worse. Bodywide weakness. My arms, legs, head feel very heavy and it is hard to pick up anything because it feels so heavy.
I know some people have this symptom and it comes and goes but this is pretty much constant now. Is that normal for Lyme?
What about the constant trembling. I hear people say that they get that but, all the time? My butt sweats really bad every morning until mid afternoon through my underwear and pants.
Severe acid reflux that I am having a hard time controlling. It has burned my stomach, throat, and esphogas. Can barely eat because of it and eatting only bland food. This in itself is very hard to deal with as I am in pain 24-7 over it.I am getting an endoscopy next week.
I lost 20 pounds in the beggining due to the stomach problems but have not lost anymore since Christmas. I am still losing muscle through. Around my knees, tops of hands, and shin bone all stick out. Family says from inactivity. I'm afraid it is Lyme induced ALS.
My hands and feet fall asleep very easily and my hands are very red and mottled.
I have also develped a rash when I started getting bad. I looks like little pimples or razor burn it's all over my thighs and butt. Sometimes there is little white stuff that comes out. It does not itch.
I don't know what to do at this point. I am afraid if I treat I could get much worse if my problem is from not being able to detox.
Yet I am afraid not to treat in case this is now active infection. Per one of the Lyme doctors recommendations I started taking clay for detox along with heel detox kit.
I cry everyday and feel very hopeless. I want to be better so bad. I can't live like this. I am terrified that I am going to be unable to even get out of bed soon or that this is going to kill me. I am afraid to be alone due to how weak I am and feeling like I'm going to pass out.
When my husband is working family comes to get me and I stay on their couch all day and they help me. I can't help but be scared that I am not going to get better this time. I'm scared! I was not nearly this sick last time.
I think about death everyday and have thoughts of suicide. I don't think I would do it but, the thoughts scare me. My family is aware that I feel this way and are keeping a close eye on me. My doctors also know this.
My dad comitted suiside 3 years ago after having a bad reaction to medication and I know how much it tore up my family.
Once again sorry for how long this was. I am truely at my wits end over this. Thank you to anyone who took the time to read this. My hands are now shaking very bad from typing this and I really feel like I'm going to black out.
[ 02-28-2013, 04:27 AM: Message edited by: Robin123 ]
Posts: 161 | From AZ | Registered: Feb 2008
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I don't have any advice as I'm still learning. But please hang in there and take it one day at a time or hour to hour.my thoughts are with you.
Posts: 137 | From New england | Registered: Aug 2012
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glm1111
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So sorry that you are so sick and suffering. ILADS is now considering that parasites/worms are now the number one infection of Lyme disease.
Given the symptoms you describe, it certainly sounds like this could be a major problem for you. Google parasite symptoms.
There is a parasitology center in Scottsdale, Arizona run by Dr. Omar Amin, MD. He is highly recommended by lymestrategies, the group that does the salt/c protocol.
I would call them ASAP and make an appointment. Just wanted to add that after 4 yrs of abx, the only thing that helped turn the corner for me was treating parasites and I was as sick as you are describing.
I hope this helps you somehow. Doing nothing is really not the answer. Try and hang in there because there is always hope.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I just had stool testing done through them. It came back low levels of yeast and some other parasite that had a low level that my naturopath said would only cause diareha. I started taking something that is supposed to treat yeast and parasites just in case this is contributing. I've also started taking Allicin. But, I'm afraid the garlic is irritating the reflux more.
Posts: 161 | From AZ | Registered: Feb 2008
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Had you taken Prilosec, Minocycline, and Flagl before? Did you ever have a reaction to these? I'm still learning here too- but just initially thought drug allergy or reaction.
I took 4 days of Avelox once and had a bad reaction that lasted several months- no feeling in my Achilles tendons, racing heart, nausea, constant headache... just a thought.
I really hope you are able to find an answer soon. Posts: 428 | From Midwest | Registered: Dec 2012
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Rumigirl
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Wow, no wonder you are feeling the way you are emotionally. This is really bad!
It sounds like you need some really gentle detox to start, so that you could tolerate any treatment of any kind. But it should be overseen by a good Naturopath or LLMD, due to how sick you are.
What kinds of treatments made you better the first time? Perhaps, you might be able to tolerate a tiny amount of whatever it was at some point soon as a starting point? Again, get help, so you aren't free-lancing.
It's good that you are getting an endoscopy to see what is going on GI-wise.
It sounds like you might benefit from asking your LLMD if they could evaluate you and treat you with something like Cortef for your adrenals, and Florinef and possibly a beta blocker for Neurally Mediated Hypotension or POTS
(Postural Orthostatic Hypotension Tachycardia). Also, checking thyroid and other hormones and treating as necessary. These things could give you some strength so that you might be able to tolerate some treatment.
Is there a local Lyme Support Group that you might either go to, or even just call people from for support, if you aren't well enough to go?
This does indeed sound like Lyme induced ALS (I'm not diagnosing!), so you need all the help you can get here to get you to the point that you can tolerate some form of treatment.
Keep reaching out for help both locally and here. Don't be afraid to ask for help (sounds like you aren't afraid to do that, thankfully). There's also the Suicide hotline number listed at the top of this thread. Keep that number handy.
And don't ever do it, no matter how much you might want to! Many of us know all too well how we might wish for it when we are desperate.
Posts: 3771 | From around | Registered: Mar 2008
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My cortisol is high during the day and normal at night. At noon it is twice what it should be. I had my throid tested as I am on thyroid medicine. It was fine. I do not have POTS. My blood pressure is normal sitting/ standing. It does not drop.
I do have friends from a Lyme group who I do call. They are very helpful. But, nobody knows what really to do with me.
Posts: 161 | From AZ | Registered: Feb 2008
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glm1111
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Oh Wow, That's very disappointing to hear. Stool testing can be very inaccurate and sorry to hear that this is the only thing they consider.
Is there a ND in your area that does ART and is familiar with treating parasites?
There is a thread here called PARASITE WARRIORS SUPPORT THREAD that I started. Many on there who didn't think they had parasites treated anyway and are "seeing" results.
I tested negative for years on parasite testing and found out I was loaded after i started treating with antiparasitic herbs and salt/c.
Knowing what I know now, if I were you I would consider the salt/c protocol and antiparasitic herbs. There is an e-book you can buy from lymestrategies or order the book from Amazon.
Salt/c is supposed to kill bb, and parasites along with other co-infections. You would need a good sea salt and Ester C powder.
I started with 1/4tsp sea salt mixed with 1/4tsp Ester C powder in a glass of water per day. I increased 1/4tsp each according to how I was herxing.
I also used Parastroy. Humaworm is also another option and you can look online or at your health food store for other parasite cleanses.
Allicin sounds like it's too harsh for you right now. You should also start any parasite cleansing at 1/2 the dose suggested.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I have not taken those meds before as I avoid meds due to always having bad reactions (but never like this). But, I feel I can't keep thinking it's a bad reaction when I continue to get worse. That's what I thought it was for the first two months.
Posts: 161 | From AZ | Registered: Feb 2008
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glm1111
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piegirl,
I had very bad trembling and internal vibrations along with EVERY symptom on the parasite symptom list.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I can't take any vit c at all. Even buffered kind. It makes my reflux very bad and this was before the reflux got bad. I have a very sensitive stomach. Even more so now.
Posts: 161 | From AZ | Registered: Feb 2008
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glm1111
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Maybe you can just start with a very diluted dose of C in water mixed with the salt and it wouldn't give you reflux. Then drink extra water. You have to start somewhere.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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D Bergy
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posted
If you have access to a Rife machine, and you have H-Pylori, you can easily get rid of it. Your Stomach symptoms are identical to mine when I had the infection.
It obviously is not causing all these problems, but it is not helping either. One thing at a time. I am sure you can get this back under control.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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glm1111
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What natural tx did you use in the past that made you well?
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I know. I could give it a try. It is hard with how irritated my throat and esphogas are. Even very bland food hurts to get down.A lot of the natural stuff that is used for reflux, like DGL make it burn worse. Most things I try I can't tolerate due to this. My doctors are at a loss at how to get my stomach in order. I have so many bottles of different stuff on my counter that I couldn't take.
Posts: 161 | From AZ | Registered: Feb 2008
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Rife is at the top of my list for treatment for H-Pylori and Lyme & Co. At least I don't have to worry about it upsetting my stomach more. I have access to a Dan Tracy machine or I'm considering buying a better machine.
The H-pylori was found on a blood test. It was borderline postive. Then I just recently did a stool test which was negative. So, I don't know if the one day of antibiotics took care of it, the stool test was inaccurate, or I didn't have it in the first place and I going through this for nothing!
Gael,
The natural treatment I did was I went gluten and dairy free (still am), treated candida, did accupuncture w/herbs, treated adrenals, and later did Byron White and Nutramedix. But, my symptoms were kind of different last time and not nearly this bad. I still worked, showered everyday, went out to dinner, etc. Which I do none of these now.
Posts: 161 | From AZ | Registered: Feb 2008
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glm1111
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I am wondering if some ALOE VERA GEL might help calm things down for you. I once healed 3rd degree burns with this. There has to be an answer here. Have your docs suggested any IVs?
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Rumigirl
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quote:Originally posted by glm1111: So sorry that you are so sick and suffering. ILADS is now considering that parasites/worms are now the number one infection of Lyme disease.
Given the symptoms you describe, it certainly sounds like this could be a major problem for you. Google parasite symptoms.
There is a parasitology center in Scottsdale, Arizona run by Dr. Omar Amin, MD. He is highly recommended by lymestrategies, the group that does the salt/c protocol.
I would call them ASAP and make an appointment. Just wanted to add that after 4 yrs of abx, the only thing that helped turn the corner for me was treating parasites and I was as sick as you are describing.
I hope this helps you somehow. Doing nothing is really not the answer. Try and hang in there because there is always hope.
Gael
Dr. Amin, the parasitologist that Gael mentioned, has an herbal formula for parasites that is gentle and effective. Call him for the info. It's available on their website, too.
Posts: 3771 | From around | Registered: Mar 2008
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Aloe made the bitter taste in my mouth worse. I don't know if I was tasting the reflux or the aloe. One of my symptoms with the reflux is constant bitter taste in mouth. I did try George's Aloe which I tolerated fine. Have to get more though. I keep trying different aloe's though.
Dan,
With the H-Pylori did you have where your stomach felt like it was swimming in acid? I feel like my body just keeping cranking out acid to the point were my stomach feels full with it and I can't breath well.
Posts: 161 | From AZ | Registered: Feb 2008
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What IV's do you mean?
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Rumigirl
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The aloe sounds like a good first step to heal your gut, so that later you could tolerate something.
Rife would also be a way of treating that doesn't hurt your stomach. Just go slowly!
Do take your + h pylori test seriously. Negative stool tests are extremely common for this and for parasites and mean nothing, other than that it wasn't seen in that sample by that lab. It doesn't mean you don't have them.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
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quote:Originally posted by Piegirl: Geal,
What IV's do you mean?
I don't know which ones she thought of, but you might be able to tolerate either IV colloidal silver or IV antibiotics (going slowly, of course!). That way, it would bypass your poor digestive tract.
But do try the aloe to heal it.
Posts: 3771 | From around | Registered: Mar 2008
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posted
The GI doc is also going to look for it next week during the endoscopy. But, yes I'm not going to ignore it. I'm currently working on trying to find a PPI to take down the acid. I tried Prilosec again. It helped for the first few days but has stopped working.
Posts: 161 | From AZ | Registered: Feb 2008
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glm1111
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Not sure which IVs...just thought your LLMDs might have tried some IV abx.
Just checked juicing...cabbage juice is very healing for ulcers so could help calm down inflammation as well.
I would cook it down with some chicken broth and drink it.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Yes, I've considered IV's. Not sure about the IV antibiotics though. I may have to go on them considering how bad my other symptoms are.
Posts: 161 | From AZ | Registered: Feb 2008
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glm1111
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Here's what I would try
ALOE VERA GEL
COCONUT WATER
CABBAGE JUICE COOKED WITH CHICKEN BROTH
DILUTED SALT/C
DR AMINS ANTIPARASITIC HERBS STARTING WITH VERY SMALL DOSE MIXED WITH ALOE GEL
RIFE
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thank you for your help Gael! I will try those. Why coconut water?
Posts: 161 | From AZ | Registered: Feb 2008
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glm1111
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Your very welcome. Coconut water is VERY healing along with being antifungal and antiparasitic.
Google coconut water health benefits.
I drink it every day. I keep it in a glass in the fridge and sip on it through the day. Delicious as well.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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glm1111
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P. S. The Aloe GEL is more soothing than the JUICE.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Pie girl, Keep talking and asking questions.
I have had every symptom you describe. Checked for Parkinson's, AlLS, and MS due to trembling issues. Nothing conclusive.
Have been treated with abx, some time off, then mildex for the mold, now parasites. My doc had me see a naturopath in his practice for milder treatments to let my body have a reprieve for about three weeks.
Taking many supplements for my shot adrenals now. I'm seeing some improvement with Therazyme ADR T9 to T10 along with small doses of Florinef. Trembling and weird vibration feelings are not constant now, but come and go.
You might also try a zapper for any parasites in your blood.
IMO the parasites we've gotten from ticks and/or other blood biters (mosquitoes and horse flies) may mutate, hide, and then emerge, so we're constantly battling new symptoms and feelings of helplessness.
There are days when I wish the pain and awfulness were over, but then my thoughts and heart turn to my husband, my kids, etc. They want me even when I don't want myself. I bet you have at least one or two people like that.
This place has helped me not give up even when the time is bleak. There are others who understand, who care, who can give ideas of what to try even when our docs are also searching for ways to help us.
As for eating and your throat, I've found Nexium has helped me the most. It's not perfect, but it seems to have stabilized a bit for me.
Cabbage soup with black beans, chicken broth, a few tomatoes, and spices and herbs can help you on those days when you are really puny.
Tai chi for seniors (and no, I'm not yet one) has helped me rebuild or at least slow down muscle loss, and it has helped calm me. Don't know if a racing mind troubles you, but it does me.
Speaking of that, I need to wrestle this imp insomnia again tonight. Hang in there. Help is a few typed letters or a phone call away. That is one impulse you must not act upon. Just think, one day, you may be just the voice of experience or hope for another person battling all of this.
Hugs.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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posted
I like Dove's last comment about some day, you may be able to help others, given what you've gone through. Just because your dad made that decision does not mean you have to.
I always think we're in waiting - waiting for treatments to work - and that takes patience - and when they start to help in any way, that's our miracle - so you need to give that possibility a chance to happen -
People here have been helpful. I would also like to see doctors recognize what you're dealing with, based on your symptoms.
I don't know if this is something that gets done sometimes - to contact ILADS, give them the list of your symptoms, and ask them whether they have any doctors to refer you to who recognize your collection of symptoms.
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AuntyLynn
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posted
You have my sympathy Piegirl.
It is always distressing to hear that someone is unable to take the nutrients that we all take for granted.
Adele Davis, whom the New York Times called: "The High Priestess of Modern Nutrition" was especially concerned for folks who were too ill to eat.
She recommended that caregivers mix a "shake" of milk, eggs, brewers yeast, magnesium, and other supplements - and directed that they encourage their patients to take a few sips of this shake throughout the day.
This "power shake" supplied the basic protein and minerals to keep the body nourished -and was readily digestible - by people who were too weak to handle normal digestion.
It has to be discouraging beyond what most could imagine, to not even be able to hold down food ... but you can overcome this challenge.
One thing no one seems to have mentioned ...
PROBIOTICS??
I know you say you have omitted dairy from your diet, but you can still take some very potent probiotics that come "dairy free."
BIO-K (available at Whole Foods Market) is one I would recommend.
I find, almost invariably, that any kind of stomach upset can be calmed, to a greater or lesser extent, by adding probiotics.
I also agree that green coconut water can be very beneficial - especially for someone whose electrolytes are jeopardized due to insufficient diet and illness.
Coconut water has almost exactly the same electrolytes found in human blood.
In fact, when WWII surgeons in the Pacific Theatre ran out of blood products, as a last-ditch resort, they tried an IV of green coconut water on their wounded. It worked like a charm, and their courage was rewarded in that many lives were saved
(ZICO brand is my favorite "all natural" brand, and IMHO, well worth the few pennies more.)
I have also heard miraculous things about RAW cabbage juice for ulcers. Juice cabbage just as you might a carrot. Surprisingly, it's very sweet!
Now, this may come as a huge surprise to you, but most nutritionists do not agree with the medical community when it comes to the subject of "acid reflux."
Dieticians insist that acid reflux is not a symptom of "too much" stomach acid - but rather, it is a result of too LITTLE stomach acid!
Those who understand this process say that acid reflux happens when the stomach is forced to overwork.
The stomach that tries to break down foods without sufficient digestive acids or enzymes, churns and churns and churns ...TRYING to break down the food enough PYSICALLY so that it can be absorbed by the small intestine.
A stomach that cannot do its job within the normal time frame, tries to worker harder; and the increased "muscle action" tends to slosh whatever acids ARE available, back up into the esophagus!
Thus, the nutritional prescription for acid reflux is not to dilute one's stomach acids/enzymes(as with "the little purple pill"); but rather, to ADD MORE digestive acids/enzymes!
Taking papaya or pineapple enzymes (Papain or Betaine) with every meal - or even some Hydrochloric Acid (HCL)- is said to significantly reduce the symptoms known as "acid reflux."
Thes enzymes are readily available as chewable tablets at most health food stores. HCL can be obtained at your pharmacy.
"Acid stomach" is said to be a misnomer, because the discomfort actually arises from a LACK of digestive acids!
When food is properly digested, the nutritious slurry can readily pass on to the small intestine, just as it should.
But if the food is is not broken down sufficiently, it will be locked in the "purgatory" of an incompetent stomach! Tossing and tossing until the physical battery eventually does, what the missing acids SHOULD HAVE done!
It seems that you have tried the conventional medical advice, which has lead to frustration. Maybe it's time to explore "the road less traveled."
I would start with baby sips, of an almond or coconut milk egg nog ... with a little brewers yeast & some probiotics?
Tailor the protocol to suit your present ability to digest things - and when you are feeling stronger, then you can try the papaya enzymes and graduate to something more challenging. (Like maybe a real turkey sandwich?)
I think you can find your way out of this dark tunnel, if you resolve to cautiously nurture your body, and give it a little patience - just as you might mother a fragile infant.
I wish you every success.
[ 02-28-2013, 04:29 PM: Message edited by: Robin123 ]
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annxyzz
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It seems no one else has mentioned this, but you are seeing your challenges through the lens of anxiety and depression , which may need to be treated .
The fact that your dad took his life would cause me to strongly question the possibility of anxiety and depression being a genetic issue tht does not go away on its own.
Most people do not kill themselves over a bad drug reaction. They do that because they are depressed and the hard wiring in their brain circuitry is not firing properly .
That causes them to be incapable(!) of seeing the world differently , no matter how strong they are . The wiring issue can be genetic and make us feel very fragile , hopeless, and stuck in a dark place .
Personally, I would deal with the mood disorder FIRST . Then , when I felt more stable emotionally within myself ( you do sound rational!) I would apply logic and try one thing at a time .
If I thought I had an H Pylori infection, I would try to find a way to treat it . If the test results are marginal, then the infection should not be very entrenched and would respond to meds fast , I would think.
Feeling stronger emotionally will help you see more clearly and have a bit of optimism to keep trying .
Depression , esp if genetic, does not get wished away . In my own case , a low dose of prozac or zoloft make a huge difference ! These issues are VERY often genetic .
posted
Piegirl-I am thinking of you! As mentioned, try to take this hour by hour, minute by minute. Take deep breaths-I know, sounds silly but it may help.
And I agree with the post above-the anxiety and depression caused by this disease really messes with our thought processes. annxyzz has a great point of dealing with these issues first.
Also, I have had many H Pylori infections. Protonix seems to work the fastest for me but I know we are all different.
I am glad that you posted-keep posting and keep up with those deep breaths! I wish I had more to offer you. You are in my thoughts and am sending positive energy your way
[ 02-28-2013, 04:32 PM: Message edited by: Robin123 ]
Posts: 238 | From new england | Registered: Feb 2013
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Thank you everyone for your sweet comments.
I take probiotics and was taking digestive enzymes but the enzymes seemed to increase the acid. I have tried almost everything the natural route suggests for acid reflux yet it is still really bad. That is why I just started trying conventional treatment.
I can keep food down now. I just couldn't the day I took antibiotics. I do throw up acid almost every morning though and dry heave a lot.
The lyme doctor I just saw specializes in mood disorders and she recommended a natural anti anxiety med called Kavenace. I started taking it and it is helpful. She believes these symtoms are coming from how bad my symptoms are, not true depression. She is aware about what happened with my dad.
Posts: 161 | From AZ | Registered: Feb 2008
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D Bergy
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posted
Yes, excess acid to the point I would puke if I put a piece of citrus fruit in my mouth. I think it is the stomachs defense mechanism for the infection. I also had reflux and a burning pain.
Run 676 Hz on the Dan Tracy EMEM for ten minutes a day for a week. Place the machine close to your stomach. You should feel relief within a few hours of the first treatment. It will come back if you miss a day.
Good luck
Dan
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AuntyLynn
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Member # 35938
posted
Piegirl -
So glad to hear that now you are managing to keep food down!
D Bergy's comment about acid being a "defense mechanism" makes perfect sense. Normally, acid kills bacterial growth. (Why we "pickle" foods.)
I wonder, do suppose that you have Borrelia living in your digestive tract? I would bet that my Mom had it in her intestines, and then her bladder for a time - as she was suffering from chronic diarrhea, then intense bladder pain. The docs couldn't find a reason for either malady. But it is said that Borrelia can take up residence in almost any organ.
Hope/pray you are able to stay the course, and get some peace back in your life.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
The picture you describe is one of a person who is having to be cared for by others "babysat ". And you are describing many symptoms of anxiety that is running rampant along with suicidal ideation. The topic of your post mentions "SUICIDAL" . That is not a minor matter , esp w/ a family history of depression.
If your "doctor " knows the family history and that you are having suicidal thoughts and feelings of hopelessness, she needs to be responsible and direct you to someone who can help you .
Sharing that you are feeling suicidal on a public forum is a serious issue , and lyme does not cause everyone to feel suicidal. Depression can do that , and it can take a huge toll on those who love us and have to "babysit " us . What is "true " depression? Everything you described vividly screams a serious mood disorder . I hope you will not blame lyme for all issues or feel bad for being depressed. You have to take steps to help yourself , and I will pray you know what to do .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
Re: probiotics--You said above you're taking them, good!
1. Look to see if you are taking a brand that has a lot of different strains in it, the more the better. For example, the one I take has 15 strains. If you've been taking your brand for a long time, consider switching to a different brand (maybe with different strains?) for a while.
2. You can safely take a lot of probiotics. My doctor says I can take up to 75 billion. I usually take 60 billion (2 capsules a.m. and 2 capsules late at night). If you're not taking that much, try increasing a bit.
3. For occasional reflux, I open a capsule of probiotics and dissolve it in my mouth. This really helps. I don't know if it would help you but I don't think it would hurt you to try it.
Also, is there any chance you have a sinus infection? I used to get the most horrible stomach burning, vomiting, etc, just from the drainage out of my sinuses. There are some good natural ways to help if that's the case.
Don't give up, you are just getting into problem solving mode and it might take a while to find some answers. But there ARE answers! My best wishes to you!
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
People have given you a lot of good suggestions. Don't give up early - it takes patience to get through all this - to find out what's going to work. And when we find things that help, it's such a relief!
Posts: 13116 | From San Francisco | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Piegirl, I couldn't handle prilosec (made me worse, nausea, shaking).
Do you think you got bit again last fall? The reason I ask is, I came down with horrible acid reflux shortly after I got bit (one of several different times). I also had terrible depression & suicidal thoughts.
Looking back for me it was due to lyme & bart (depression) and more. I also think the severe acid reflux I had was h pylori. I remember my stomach was extremely acidic. I finally used oatmeal and honey to calm it down, along with trying DGL, chewing mastic gum, etc. Zinc really helped repair it too.
I also had a pounding heart, severe weakness, tingling, my feet would fall asleep and allergic to everything overnight. Then bit again, I developed constant 24/7 trembling (back) and chills, stiff neck, sweats, butt tingling too (this was when I got babs).
It sounds like you have a lot going on (several co infections). I think the main thing is to get your acid reflux calmed down first. Can you handle oatmeal? It sucks all the acid out of your stomach. I ate it for breakfast, and if my throat was acidic, I'd have a couple tablespoons about an hour before bed.
Then a tsp of honey at bedtime. Honey repairs the throat and stomach lining. This was pre lyme diagnosis for me, so I didn't have the yeast issues then. You may have to up your probiotics. I would also take some zinc. Lyme and co infections love our minerals and suck them out of us. I'd lay odds you are deficient here.
Once your stomach calms down, I'd focus on parasites if I were you. Everyone has parasites, IMO. They are a HUGE part of lyme. Some have more than others, and some of us seem to have a rather large imbalance of them.
The parasite tests are flawed, so it's important to find a doc who recognizes this and actually treats parasites. You may need to see a Dr. K type specialist for this if your doc doesn't treat. It took a while to convince mine to treat so, I did parasite stuff on my own. I'm still doing it when I'm not on parasite meds.
Hang in there Piegirl! You're not alone.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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I do realize the seriousness of what is going on with me. I do have the # of a therapist who I think I am going to call. I was suicidal the last time I was sick but was fine once the symptoms started to improve. Have not had these thoughts until about a month ago when things started getting very bad and everything I tried was not helping.
I did do 2 years of therapy after I started to get better the last time I was sick. Mostly relating to childhood issues. But I do think I need to do it relating to this in particular. It is just hard with how weak I am as it takes everything I have just to get dressed. This weakness is getting worse each day.
Either way these thoughts are still real and I know they need to be addressed. I just don't handle being sick very well. It's weird because my biggest fear in life is dying.
Also, I know the babysit comment maybe didn't come off right. It is accually a joke amoung me and my family about needing help because of how weak I am. I do still have my humor intact at times even with how I feel.
I am very thankful for everyones help and support. I posted this because I know people here would understand and I was hoping some people would say that they have been this sick and have come back from it.
Posts: 161 | From AZ | Registered: Feb 2008
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Since I started Prilosec last week my shaking/trembling and weekness has got worse. I have a call into the GI doc to see about another PPI. Prilosec isn't helping the reflux that much anyway. Not sure if those will give me a problem/not work too.
I could have been bit again. I was in Big Bear, CA a couple weeks before the antibiotics but, the day I took the antibiotics is when I really went downhill. I checked for ticks the whole time I was in Big Bear. But, I guess I could have missed one.
Posts: 161 | From AZ | Registered: Feb 2008
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
The chills and trembling in my back started exactly 2 weeks after my last bite. It was so bad that I couldn't stand up straight, and the muscles in my back ached due to the constant trembling.
I went off the prilosec after one week. Unfortunately, I didn't know I was supposed to ween myself off of it, not do it cold turkey. So my reflux got even worse (had to sleep upright in a chair). That was when I got into the natural stuff (it works).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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I haven't had a chance to read through all of the comments but was wondering if you think you still have h-pylori?
I had it years ago and it was absolutely HORRIBLE! It took them a few months to figure out what I had and then I took a combination of 3 antibiotics for 3 weeks to get rid of it.
Your symptoms sound so much like mine. I had depression with it, tremors, zero energy..ect. It hurt to even drink water.
Even after the treatment I was still very sick for a few months. It sounds to me like you may still have an active infection.
Once you have H-pylori, you will always test positive on blood work, so you need to do a stool test to see if it's still active.
I am so sorry that you are going through this. I have felt the same way as you before. Hang in there, you will get better, it's just figuring it out.
You can pm me if you have any questions about when I had it.
I also took acid reflux meds and they didn't help me at all when I had it.
Bone broth is excellent for your stomach, if you or someone can make that. Super nourishing!!
Posts: 486 | From USA | Registered: Jan 2012
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Believe it or not sometimes when chronically ill, there is a LACK of hydrochloric acid in the stomach.
HCL is a natural antibiotic that our body uses to kill bad bacteria in the stomach. To further deplete it with an antacid can be counterproductive as it let's bad bacteria thrive.
Sounds like you have an infection that needs to be tx and finding a Dr K trained ART practioner would be beneficial.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by glm1111: Believe it or not sometimes when chronically ill, there is a LACK of hydrochloric acid in the stomach.
HCL is a natural antibiotic that our body uses to kill bad bacteria in the stomach. To further deplete it with an antacid can be counterproductive as it let's bad bacteria thrive.
That's a really good point, Gael. I forgot about people with not enough acid. It just sounded to me like she had too much (like I did).
Piegirl, there is a way to test this with some apple cider vinegar (google). I just knew mine was from too much acid, because it was burning my throat at night.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
The best thing you can do is go to the therapist and tell him/ her "My biggest fear now is dying ". Given that lyme is not a quick killer, this will explain a whole lot . People who have uncontrolled anxiety commonly state EXACTLY what you just said . And guess what ! The underlying anxiety ( which your kavinace is not fixing ) is quite FIXABLE . And once it is treated , you will still have lyme, but your perspective on everything else will be different . In other words it will not look like an insurmountable challenge or one that will lead to death .
Anxiety colors everything we see , and our ability to manage our challenges . It is paralyzing , but it is quite treatable and EXTREMELY common !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
I believe I have too much acid. Back before Christmas the acid was not so bad and I kept trying different things (most of the stuff people mentioned to me here). So I tried apple cider vinegar. Right away is when things went from manageable to severe and has not stopped since.
Last time I was sick and had some acid reflux (nothing like this) I did conventional treatment first and it did not help. Then did natural stuff which is what worked. This time none of it is working or has made things worse. This is why I'm am so frustrated with it is becuase I have already tried so much.
Posts: 161 | From AZ | Registered: Feb 2008
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
What about Glutathione? I can't detox and it's the only thing that helps clear my head of all the neurotoxins.
posted
I tried some Glutathione in pill form which I guess is not the best kind and had some very weird reactions. Tried it a couple times. May try again as it has been about a month since I tried it.
Posts: 161 | From AZ | Registered: Feb 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I was having frequent reflux and heartburn. I take Excedrin for pain, and I know that the aspirin in it may cause gastritis. I had to be careful about eating before I went to sleep, as sometimes I woke up aspirating stomach contents...inhaling it into the bronchus.
I found out about d-limonene for reflux, and I was pleased with how well it helped. After a couple bottles of that, I tried taking PepZin GI, and WOW, that worked even better!
You can look at reviews for both d-limonene and PepZin GI at iHerb.com.
Berberine is antibacterial and anti-inflamatory and found in several sources, including Coptis, Oregon Grape Root, and Goldenseal.
When taking Berberine, my pain and headaches improved, and I had a period of two months where I felt better than I had in years. Much to my surprise, the reflux improved too, significantly.
I stopped Berberine for six weeks, and I gradually began getting some reflux again. When I started taking GlycoX again, the reflux stopped.
If you've already tried d-limonene and PepZin GI, look into Berberine.
posted
I have been on PepZin for a month and I don't think it is doing much. Tried Berberine it caused my hypoglycemia to get worse. Thought about trying d-limonene but since it is made from oranges and any citrus makes my reflux worse. I'm a little afriad to try it.
Posts: 161 | From AZ | Registered: Feb 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Camel's milk is extremely healing for people with digestive problems. Here is a site about a young man who got parasites in Israel and was literally dying because he couldn't hold anything down. The day he tried camel's milk he began recovering.
Email me and I will send you the name of someone who can send you the milk. It is raw so as not to kill the antibodies, which are similar to human antibodies - only much smaller. They are referred to as "nano antibodies" because they can penetrate deeply into tissues etc.
Camel's milk is helping children with autism, children that have allergies so terrible they cannot eat much of anything, and people with lyme disease.
You might also have protomyxzoa because it causes twitching, profound weakness, insomnia and can lead to ALS. It responds to ivermectin - an antiparasitic drug. I don't know if that would bother you or not.
You could follow the low fat diet first to see if you improve. You should eliminate meat and fat. You want to restrict your fat intake to 15 grams a day. The camel's milk has about 6 grams per cup but you only need 1 cup a day - 2 if you can't eat much of anything else.
I have trouble with drugs too. I was off and on them for over 5 years. The low fat diet helped me but I also take LDN and methyl cycle supplements. It sounds like you could really benefit from knowing your methyl cycle mutations so you are eating and supplementing properly. When you have these mutations you can't detox well but you can open those pathways so you are.
There is always a reason for what is happening. When you don't find the answer in one place, don't keep looking there. Look somewhere else. Look at protomyxzoa.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
So sorry you are having such a hard time. You have a lot of good options above and I know you will get better. I think the rife option is a great idea. Aloe is very helpful as well. The camel's milk could help - my kids are taking it and tolerating it well. Bone broth sounds soothing and healthy as well.
I have trembling and vibrating from parasites and then it became much worse after taking antibiotics to try to get rid of them. My EDS practitioner could see what was in my peripheral nerves and the drugs were there at very high levels. She was able to making a clearing rememdy from her EDS machine to clear the antibiotics out of my system using homeopathic drops imprinted with the frequencies of the meds that I took. It did help. Since my nervous system is a mess right now I have a very hard time taking drugs and have to stick with herbs. Even some herbs negatively affect my nervous system.
Maybe you can find a practitioner in your area that can make clearing remedies to get the abx out of your system. Our practitioner says it stays in the body for life unless it is cleared. She can test you and tell you every antibiotic you ever took, even those taken as a child.
One thought - do you have to have surgery right now - I guess you will have to weigh the benefit of the surgery to the exposure your system to more drugs.
I like Dan's idea of trying to rife away the H pylori. If instead you are interested in trying another herb to treat it, our practitioner uses pyloracil.
I hope you start to feel better soon.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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I have also develped a rash when I started getting bad. I looks like little pimples or razor burn it's all over my thighs and butt. Sometimes there is little white stuff that comes out. It does not itch.
I have this too, except it is on my upper back. Sometimes, when starting a new abx, it would spread to my lower back and butt too.
My LLMD feels it is must likely caused by bart, as it almost goes away with bart meds and flares on anything else.
You are in my thoughts and prayers. I can comprehend where you are now.
Posts: 106 | From Rural Michigan | Registered: Jul 2011
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I think you might have bile reflux. I think many of us with lyme encounter this at some point, maybe at different levels. You should talk to your naturepath or LLMD about this. One of my LLMD gave me somehting for this. It mildly helped ironically what helped me more was Flagyl and pepcid AC, peppermint tea and probiotics (Kyodophilus and VSL#3). 1/2 teaspoon of baking soda some days. I think Gael is right I think it's parasites.
Posts: 697 | From CA | Registered: Dec 2011
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posted
WOW! So many great suggestions as to what to try. It's going to be hard figuring out what roads to go down.
mlg- I have thought it is maybe bile reflux too. Since things for acid reflux only work a little if any. What did your doctor give you that helped a little?
nefferdun- I just started some methyl supplements in the last month. I don't think I can eliminate meat & fat from my diet as that doesn't leave me much to eat and I can't afford to lose anymore weight.
tickbattler- I'm going to try the rife for H-Pylori. I'm afraid not to get the endoscopy done due to how bad this is. I just need to know at this point for peace of mind. I am worried about the meds to put me out though. They tend to make me throw up the rest of the day.
Posts: 161 | From AZ | Registered: Feb 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I was just looking at iHerb to see what was on special, and I started reading reviews for apple cider vinegar.
I have not tried it, but many people are saying that two teaspoons of apple cider vinegar help to stop reflux. This comes in tablets also, with acetic acid, and the tablets seem to work too.
Seacure came to my attention a couple years ago, when some people here said that their LLMD recommended it for digestive problems.
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Piegirl - whenever I have surgery I tell them that I am super sensitive to drugs and I basically interrogate them about what they are giving me and if they can give me a smaller dose. You have to be very vocal but I think it does help. Unless you say something, they often give the same dose to men and women, regardless of weight!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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quote:Originally posted by Piegirl: I am worried about the meds to put me out though. They tend to make me throw up the rest of the day.
I agree with tick battler, talk to them beforehand about the nausea! Tell them you have experienced this problem before and want to know what they can give you to prevent it, or how they can adjust dosage to prevent it. Also ask what they can give you afterwards if you do get nauseous, and have a prescription or samples ready. Some anti-nausea meds come in suppository form which is useful if you can't keep anything down.
When I had some minor gyn surgery a few years ago, I asked to speak with the anesthetist beforehand. I told him I get TERRIBLE nausea from anesthetics. He listened to me carefully and added something into my mix for nausea, as well as tailoring the anesthetic drugs specifically for me. It worked! I was fine afterwards!
I think that anesthesiology is improving, at least it seems like they have more choices to work with.
Posts: 261 | From Nebraska | Registered: Jan 2010
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I also know mimosa puddica is for what in spanish we call "bilis" bile reflux.
I believe other natural pathic doctor should have treatments. Some things that helped peppermint tea, organic ginger tea, phenergan, baking soda, aloe vera.
Take care,
Posts: 697 | From CA | Registered: Dec 2011
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