HealingWell
Search Close Search
☰

LLND appointment tomorrow

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/9/2017 7:06 PM (GMT 0)
I am nervous. How did you know what type of treatment to pursue or when to switch it up?
I kind of wish I could just go with IV abx and supplements. I'm on a pretty low dose of doxy but my stomach hurts a lot, I'm nauseous frequently and I'm losing weight. I have a hard time getting all the supps down because of taste and lots of pills increase my nausea. Plus my neurological symptoms are steadily getting worse. I feel like all doxy and the herbs have done is wake up my bugs and get them going.
But I know IV isn't a cake walk or a quick fix. I just don't want to keep getting worse. I feel like I'm losing myself and it's scary.
My gifts have always been teaching and a quick wit and a good conversationalist. Now I feel dumber by the day, lose my train of thought in verbal conversation, drop the last words of my sentences, and the nonstop head pain will make me lose it. Seriously. I've had this migraine/headache for 5 solid days and before that, I had one for 3 days, only a brief partial day in between.
I want my hubby to go with me tomorrow because I'm not good at advocating for myself or expressing my fears. He is a fierce and loving warrior for my health.
Sorry for the novel. My head is twitching and I'm not super concise right now.
Posted 1/9/2017 7:20 PM (GMT 0)
My LLMD told me when to switch protocol and what type of treatment to have. Do you like your LLMD? Do you trust him? If you do, then it is easier. If you are now taking only Doxy, I think your LLMD will add something more. It is effective to have abx combo.
Doxy can be hard on stomach. Have you tried bone broth? It helped my stomach issues a lot. I was at the point when I could only eat bananas. Bone broth strenghten stomach and gut lining.
about supplements that make you feel nauseated - don't take them. The good thing about supplements is that you can always find something else that can address the same problem. It may be less strong for a specific problem, but in my opinion it is better to go more slowly than to feel miserable because of nausea.
Posted 1/9/2017 7:27 PM (GMT 0)
I think your LLND should be suggesting the change in treatment...based on his knowledge, your symptoms, your response to current and past treatments.

But, I do like to have some input, so I understand you wanting to discuss this ahead of time.
On more than one occasion, I have suggested a treatment I was wanting...and there have been times when I wasn't happy with what my LLND was suggesting...or prescribing.

Doxy is hard on the stomach...you should be taking it with food. Your LLND should be either adding another abx to the doxy, or increasing the doxy if you're not on the required dose to be effective....OR switching from doxy to another.

Since doxy is giving you stomach issues and nausea...maybe discuss switching - you can try minocycline.
Posted 1/9/2017 7:31 PM (GMT 0)
I agree with blueberrymuffin.

I'm not seeing any mention of de-toxing to move the die off toxins to your blood stream. Are you remembering to take charcoal tabs?

I know you've been having a lot of problems lately but can't remember if this is a relapse or what, that is causing you to still be taking abx - I am taking note of your join date 5 years ago. Sorry if you've mention this recently, I'm in a fog today.

Doxy treatment by itself increased my neurological symptoms too. I had just joined, and not getting any of the info I was looking for about RMSF, I paid little attention to the detoxing section in our intro.

That really made for some herxing misery I might have been able to minimize.

That's not always an easy thing to accomplish if you have gene mutations that resist some of the de-tox methods.
Posted 1/9/2017 8:02 PM (GMT 0)
I do detox. Pinella, Epsom salt baths, lemon water, charcoal. None of it helps with anything. I do Epsom salt every day. Lemon water hurts my stomach so I can't do it too much. Charcoal i can only do in the middle of the day but it doesn't help either.
July, I think I've had undiagnosed Lyme for 20 years, possibly more. I joined 5 years ago because I thought I may have fibro. Lyme wasn't on my radar then. My medical history is long and winding and it only recently led me here.
I have always hated taking pills, they trigger my gag reflex so it's that part of it that contributes to my nausea. I am also sensitive (even more so now) to taste so the herbs are also a chore that I have to brace myself for. I feel like a big baby when I whine about things like pills and taste but it is making my life hard, thinking about the next thin I have to take or feeling guilty that I skip it because I can't handle the queasiness for the day.
Posted 1/9/2017 8:25 PM (GMT 0)

ChickNorris said...
I do detox. Pinella, Epsom salt baths, lemon water, charcoal. None of it helps with anything. I do Epsom salt every day. Lemon water hurts my stomach so I can't do it too much. Charcoal i can only do in the middle of the day but it doesn't help either.
July, I think I've had undiagnosed Lyme for 20 years, possibly more. I joined 5 years ago because I thought I may have fibro. Lyme wasn't on my radar then. My medical history is long and winding and it only recently led me here.
I have always hated taking pills, they trigger my gag reflex so it's that part of it that contributes to my nausea. I am also sensitive (even more so now) to taste so the herbs are also a chore that I have to brace myself for. I feel like a big baby when I whine about things like pills and taste but it is making my life hard, thinking about the next thin I have to take or feeling guilty that I skip it because I can't handle the queasiness for the day.


Oh..thank you, I remember now. I think you must have been the one I said pills gag me too, always have, and I suggested trying to take them with something that might cover the taste a little, plus give them something to glide down easier. And slso for the bad taste to use something to plug your ability to smell.

My herbs are tincture form. I've been putting them into a small amount of anything but water which adds no flavor, and chugging. But now that I'm on full dose of the more disagreeable one, I'm going to try stuffing kleenex into my nostrils to see if that helps. I'll tell you in a few minutes.

I am sorry detoxing isn't helping. We always hope the more easy methods work, and that isn't always the case. Some LLMD's aren't very helpful in this area, and I think sometimes from what I've been reading, pretty much expect a patient to push on through them.

One or two or three days is one thing, but weeks and months on end...no.
Posted 1/9/2017 8:32 PM (GMT 0)

julymorning said...

ChickNorris said...
I do detox. Pinella, Epsom salt baths, lemon water, charcoal. None of it helps with anything. I do Epsom salt every day. Lemon water hurts my stomach so I can't do it too much. Charcoal i can only do in the middle of the day but it doesn't help either.
July, I think I've had undiagnosed Lyme for 20 years, possibly more. I joined 5 years ago because I thought I may have fibro. Lyme wasn't on my radar then. My medical history is long and winding and it only recently led me here.
I have always hated taking pills, they trigger my gag reflex so it's that part of it that contributes to my nausea. I am also sensitive (even more so now) to taste so the herbs are also a chore that I have to brace myself for. I feel like a big baby when I whine about things like pills and taste but it is making my life hard, thinking about the next thin I have to take or feeling guilty that I skip it because I can't handle the queasiness for the day.


Oh..thank you, I remember now. I think you must have been the one I said pills gag me too, always have, and I suggested trying to take them with something that might cover the taste a little, plus give them something to glide down easier. And slso for the bad taste to use something to plug your ability to smell.

My herbs are tincture form. I've been putting them into a small amount of anything but water which adds no flavor, and chugging. But now that I'm on full dose of the more disagreeable one, I'm going to try stuffing kleenex into my nostrils to see if that helps. I'll tell you in a few minutes.

I am sorry detoxing isn't helping. We always hope the more easy methods work, and that isn't always the case. Some LLMD's aren't very helpful in this area, and I think sometimes from what I've been reading, pretty much expect a patient to push on through them.

One or two or three days is one thing, but weeks and months on end...no.

I don't think my head pain is a herx. I've been struggling with chronic migraines for years and I'd see a bit of improvement temporarily with changes like diet and so on. I've had intractable migraines before. I just think the root cause is this stupid disease and I don't know that the doxy is getting deep enough.
Posted 1/9/2017 8:38 PM (GMT 0)
You may try this.
As you say that all the pills make you nausated, take tinctures instead and put them in pomegranate juice. You will not feel the taste as strong as with the water, and Buhner actually recommends pomegranate juice.
Posted 1/9/2017 9:06 PM (GMT 0)
Stuffing a bit of tissue into each nostril before chugging my herbs helped mask the taste considerably, about all I could taste was the couple tablespoons of sugar free orange flavored drink.
Posted 1/9/2017 9:28 PM (GMT 0)
Perhaps IVs may be an option for you, but if you have to it everyday, would you need help? I'm not familiar with the abc protocol especially IVs. Are you able to get the abc in a form that would make them easier to take. Some pills can be grinded down and added to liquids.

I do hope that it gets better for you.

Also an alternative to bone broth which is an excellent recommendation is hydroloyzed collagen. You can get it in powder form and mix with your favorite beverage. Bone broth contains collagen. So they both help heal the gut. Another member here recommended Protein Essentials brand which is AWESOME.

Also don't forget your probiotics. Start low as these can cause stomach upset if you start at too high a dose.
✚ New Topic ✚ Reply