Been to the ER five times recently-need advice desperately.

I don't have much advice to offer, but I wanted to say I feel for you. I'm sure that doesn't help at all, but it's what I have to give. The only thing I can think of is--is it possible for you to only be under the care of one physician? Have the LLMD take over all of your care so there's no problem with communication? I know how hard it can be trying to get busy docs to communicate with each other.

This is a little off topic but my mom is in severe pain. Pain so bad that she is stuck in s chair 24/7. Pain so bad she has zero quality of life and I'm afraid that she will just give up. She and I both got sick around the same time. Now she went to her doctor and they xrayed her back and basically told her she has minor issues in her back that couldn't possibly cause the pain she is describing. So traditional medicine simply closed their doors on her an me. Does she have lyme? I don't know but it's just very weird. It's painful to watch her suffer too. So what to do when the people that should be able to help you can't?

At this point, it's time to think outside the box a bit and figure things out.

Have you tried homeopathy, herbs, acupuncture, energy healing? I know it may sound totally crazy but maybe you can look into thing like that. I'm not talking taking some cats claw and calling it a day, but going to a legitimate herbalist that may rotate herbs weekly or whatever to get you well?

I haven't tried it, but several people in my lyme group have a script for medical marijuana. They say it has really helped with the pain and are able to eat now. Just a thought...

So sorry you're going through this. Please keep looking for the right treatment, it will get better.

I can empathize, I was in the ER last night. I had very strange palpitations (I've been having these for at least the last week), coupled with crippling anxiety. I live by myself, and went alone - I was scared and very anxious.

I mentioned my Lyme and Co Infections to the MD, but that went nowhere - I knew it wouldn't.

After all was said and done, at least I had a productive visit and they determined my Potassium was very low. I got a potassium IV and sent away with 5 days Rx. At least I feel somewhat better that my heart is fine, along with my other basic bloodwork. Turns out my potassium dropped from a normal range a month ago, AFTER I started Zithromax. The GI issues were probably a big reason why this happened.

I am so sorry for what you are going through, please hang in there, and be kind to yourself.

There's a great quote that helps me get through hard times in life, it's from Bishop Desmond Tutu "when your life turns to dust, vacuum." You pick yourself up, dust yourself off and find the resolve to fight like hell.

P,

Plainly put, diarrhea. I've had this from the first day of taking Zithro.

From Mayo Clinic

The most common cause of excessive potassium loss is the use of prescription diuretics — water or fluid pills. Causes of potassium loss leading to low potassium include:
•Chronic kidney disease
•Diabetic ketoacidosis
•Diarrhea
•Excessive sweating
•Excessive use of laxatives
•Prescription diuretic (water or fluid pills) use
•Primary aldosteronism
•Vomiting

Soscared13, I have been trying to find one doctor to manage both my lymes treatment and all medical concerns. I chose my current primary because she had originally tested me for lymes and was more open to it than my physician at the time. I've seen two lymes doctors who both told me the same diagnosis and plan but neither operate as patients primary physician. I live in Wash., I got a great recommendation to a lymes md on here and he's my current lymes doc but I have been unable to find an md that will either do both or recognize and respect the lymes doc and treatment plans.

Louise74, it breaks my heart to hear about your mom. I will be wishing her and you the best quality of life. It is so hard for me to keep smiling every day but its all we have left when our bodies leave us not in control. I remember going through the X-rays for back pain and them saying the same thing to me. I need a chair outside of the house so I just dont leave much. Please keep trying and don't give up. Don't let your mom give up. It must be so hard on you at times. I wish you could talk with my husband. He has been expressing how hard it is to watch my health deteriorate. It's been making me think a lot about people like yourself willing to help keep trying and fighting. I wish you the best.

Mischa252, Im glad you were able to correct your potassium but sorry that they ignored your lymes. That's exactly what I was so frustrated about. But I really like your attitude, you knew it wouldn't go anywhere and you left it there. Thank you. That helps me to have more of that attitude in the future.

Roots--can naturopaths prescribe in your state? Here in CT they cannot, but my naturopath has been invaluable in coordinating my care. Fortunately I have an LLMD who is willing to work with her and take into consideration all of the herbals she prescribes. They are working here on passing legislation that would allow naturopaths to prescribe. That would be wonderful for so many LD patients. But I know that naturopaths can prescribe in some states already--just don't know which.

Roots Ruderalis, In my opinion, you need a gastroenterologist ASAP. You don't mention having been to one but it would be extremely rare if none of your doctors have recommended that you see one.

The pain in the morning and late afternoon definitely points to an acid issue, perhaps complicated by an ulcer. Have you been placed on PPI's or other acid reducers? If you have an ulcer that the acid or food is making it worse, then you would be prescribed Amoxicillin and Clarithromycin along with a PPI which are excellent at killing bacteria such as Lyme and H. Pylori.

The diarrhea makes it highly suspect that something is irritating the lining of your GI tract. Over the counter Pepto Bismol (bi****h) would work wonders if you have a peptic ulcer.

Now, to allow the stomach time to heal you could try aloe vera which is amazing at healing the issues that you have. DGL Ultra is another product that you would benefit so much from. This alone could repair your issues. The DGL Ultra would coat your stomach so that you don't get the pain or get irritated and thus stop the diarrhea.

If the problem is lower down the GI tract, you can have your doctor prescribe Carafate to heal the duodenum.

It takes the lining about 3 to 5 days to begin to heal. A combination of a PPI along with the DGL would do so much good for you.

Now, lets say that your digestive system has issues digesting the food for whatever reason. Well, then I encourage you to get Spring Valley Probiotic Multi-Enzyme Digestive Formula Tablets from your local Walmart. They are only about 7 dollars but you would pay hundreds because of how great they are. This thing is just amazing. This thing fixes bloating, constipation, IBS, has ox bile for people who don't have a gall bladder, has probiotics, digestive enzymes and a whole lot more.

Why do I believe in it? Several people in my family use it and after suffering from digestive issues and doctors being at a loss, they are doing great now. I have also recommended it to people at work and they too love it.

I know that you don't like to take medicine but in my opinion this is a very serious matter and I think that you should do whatever you can to get better. As good as Lyme doctors are, they don't have the expertise to treat digestive issues and yes, it is probable that with lyme treatment that your digestive issue will get better but remember this: the bacterial infections often cause damage to organs and other parts of the body that need to be addressed by a specialist (cardiologist, endocrinologist, gastroenterologist, etc) so please don't give up and seek the appropriate help.

As for the pain, I have personally found that the infection over-amplifies our senses which includes the sense of pain. I myself hurt a lot when they draw blood or if I suffer any trauma (hitting my toe, smacking any part of my body) . My pain threshold has lowered considerably, my sense of smell has magnified, my sense of movement is also magnified, and overall, it seem like all my senses are over-amplified because of the infection. It is possible that the pain that you feel is only a 3 but due to this sensitivity, you feel it as a 9 or higher. This would make it harder for pain medication to work properly.

Pirouette, so so similar. Im so sorry you go through it too, with all the other aches and pains this can be so hard. Thank you for being descriptive, I haven't met anyone else with this same symptom. Do you vommit every day? It happens to me either every few days or few weeks depending on the episode. I had forgotten all about that because its so minor compared to the gnawing pain for me. It's the same thing for me with the diet. In fact it got worse the more bad stuff I removed. I miss eating a normal meal, but the bloating and cramping is far worse the more that I out in my stomach its sad I used to cook all the time and loved all different types of cuisine.
It does seem hard to know what really is causing this.
Do you say you don't know if you have bartonella? I am beginning to suspect it. I've already gone the gasternologist route and took meds and did tests. They just want to blame it on the rain.
Thank you so much for sharing I really would love for you to update me on how it's going and I will do the same. I hate this set of symptoms and I know it has to get better soon, we can't be the only ones!

Roots -
I haven't met anyone who experiences the same thing, either! This is good... even the Drs I talk to look at me like I'm crazy. Let's continue to share info - hopefully we'll stumble onto some answers.

Here is a thread where I posted about the symptoms and you can read some of the responses.
https://www.healingwell.com/community/default.aspx?f=30&m=3057446

I do not vomit daily - only when these episodes come every 4-5 wks (this has been going on for 7-8 mos. now). Last week's episode was a long 12 hrs of the cramping but I did not vomit, and the pain kind of lingered for another 12 hours or so, then finally let up. This 4-5 wk cycle seems to coincide with Borellia cycle, according to Burr.

The other weird thing that happened a couple times after vomiting is - the outside of my arms, hands went tingly, numb, and stiff/paralyzed for a couple of seconds right after I vomited. And then they felt like they were so heavy I could not move them.

And I agree with you - the vomiting almost disappears compared to the hours and hours of cramping and gnawing. It's also very violent - I can probably count on one hand the number of times I've had stomach flu, have had food poisoning 4 times... but I have never, ever had such violent vomiting. Although it is quick and done. I also noticed I still had undigested food in my stomach after 12 or so hours so this seems to be more proof that I am not digesting properly. It's almost as if my stomach finally, simply refused the food. But I'm not sure what the pain radiating around the torso means - I've suspected the intestines are in on the fun - maybe kidney pain. It's so intense I cannot pinpoint it.

I, too, used to be such an enthusiastic and wonderful cook and baker. I almost opened up a bakery. A lot of joy leaves your life when you battle with the fundamental process of eating - both personally and on a social level. I identify with your eating issues - darned if eat, darned if I don't. I have multiple other GI issues going on due to leaky gut, which also leads to malnutrition no matter what I eat. I have diarrhea every couple of days and can't tie that to any foods/meds. I feel cramping and/or pressure/bloating after eating most of the time. I tend to feel better, calmer when I don't eat. I have lived on a liquid diet more than once - right now I'm drinking this "Raw Diet" powder stuff in water & almond milk. It's probably the most natural, organic, highest-grade powdered food w/ probiotics and natural raw foods that I could find and costs about $6 per meal and I'm substituting lunch & dinner with this stuff. It still doesn't take the place of regular food and is not a long-term solution.

Correct - my Dr didn't suspect Bartonella so I wasn't tested. And I find it odd that a lot of the symptoms people talk about here on the forum, and associate with a specific infection (Borellia vs Babesemia for instance) often don't coincide with what you find in literature... But I think I'll get tested.

I have an appt. w/ gastroenterologist in 2 wks, which is only to satisfy so she can eliminate other causes and move into more intense treatment.

-p