Topic: Feeling terrible - need guidance and advice.
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi folks:
I don't post much anymore. I was diagnosed in 2010 and treated aggressively for 3 years. I was at 90%+ within the first year, but had a few nagging symptoms remain so we continued to treat. My nagging symptoms were occasional night sweats, muscle twitching (primarily calves), tinnitus, and a few others. They were relatively mild.
Life had returned to normal. I work a high stress, high profile job and am the primary breadwinner for the family.
I went off antibiotics in early 2013 and continued with herbs. Even though I felt pretty good most days, I continued to treat as I believe ongoing symptoms are indicative of infection and I was worried of a relapse or future problems.
Most of what remained seemed to be either related to bart, babs, parasites, or brucella.
I've always been able to handle my flares pretty well. When I do flare, it is in a consistent pattern. And typically my flares last 3-4 days and stop if I discontinue the meds.
Well, I'm having some issues now that are concerning.
I had a flare this summer that we felt was related to brucellosis, so I went back on antibiotics for the first time in 2+ years.
First I did Cipro with Doxy. When I started the Doxy, I had a huge flare in old old symptoms. Early AM awakening, sweating early AM, feelings of dread/doom. These passed in 2 weeks.
Then I dropped Cipro and Doxy and switched to Minocycline and Rifampin. I felt pretty good here for most of September / October.
In November I switched out the Minocycline for Doxy again. I thought Doxy worked better based on the flares I had. Starting it was no problem. But a few weeks in I started to have some problems.
-In november I had moments of feeling woozy in the afternoons, usually after lunch.
-In December I had 2 instances of feeling dizzy, both coming from my right side. These would pass in a few minutes but then would leave me swirly headed for a few days.
-My ears were more bothersome. They are a weak point of mine.
I thought it was from the Doxy. I saw my LLMD right before Christmas and I asked if I could take a break from drugs. I've always tolerated breaks well. He thought it was a great idea.
I stopped meds on 12/22 and ever since then have been miserable. (Just in time for Christmas.)
My ears are very full and stuffy (aural fullness) and I get post nasal discharge. I have this miserable detached, woozy, spacey, brain herx feeling that is very similar to how I felt when I was at my worst (pre lyme Dx).
Night sweats have returned a bit (usually early AM.) And I have hot flashes. I also have pressure around the back of my head, the sinuses, and around my ears. I seem to do worse after meals.
This has now been going on for over a week....and I'm starting to get scared.
Over the past 5 years, I've only had 3 instances of a major brain herx like this. The first was starting Lariam for Babesia. It went away in 3-4 days.
The second was starting Hulda Clark parasite herbs, which also passed in 3-4 days. And the third was when i was on A-Bio. I had to stop drops to get it to clear.
I've never had this happen before when I'm off meds. And I don't know what to do.
Is it candida? Is it Babesia, Bartonella, or Brucella? I don't think it is Lyme as it typically doesn't relapse this quickly.
I phoned my LLMD and he wants me to try diflucan for a month. I'm on day 3 and don't notice anything. I think I'd like to go back on Minocycline / Rifampin, but haven't done it yet.
I really dont know what to do. I've never had these awful brain-herx feelings for this long since I've been sick...and why the hell is it happening NOW after all of this time? I was doing so well.
I am starting to freak out. I need my brain to do my job and can't think of this continuing for another 2-3 weeks. I need it to stop now.
When I felt like this on A-Bio, I stopped the drops and felt better in 3 days. But I'm not on anything as of now. There is nothing to stop.
Thoughts / suggestions? It is a dark time.
I should also point out that my LLMD has me seeing an amazing osteopath that has been working on getting my back/neck aligned. So perhaps it is related to this...but I don't think so.
Thanks for listening.
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(breaking up a few paragraphs for easier reading for many here)
posted
I am sorry to hear you aren't feeling well.
Do you have any liposomal glutathione gel or capsules? I would start with this and see what you can clear out this way. Take it a few times per day for a few days to see if it washes the symptoms out.
If you don't have this than try alka seltzer gold.
If you don't have alka seltzer gold, maybe get some organic parsley and make a smoothie or juice it.
All of these will eliminate toxins that may have accumulated either from die-off or candida, though its sounds like you are dealing with candida and aldehydes; the toxins candida likes to leave behind in our bodies!
Could also be some leaky gut. Fortunately the zonulin that line our intestines replaces itself every 3 days so you can turn symptoms of leaky gut around pretty quickly but then need to maintain with the proper diet.
To help determine if its candida and possible leaky gut, try eating coconut oil for breakfast, then lunch one day soon (a mini coconut oil cleanse; you can do this for 3 days but eat a salad with some grilled chicken etc… for dinner). If you feel better doing this, its a gut issue. May then want to add some Molybdenum into your regimen as this detoxes aldehydes.
Maybe this will help. I hope so! Take good care!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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posted
Couple questions for you - have you been eating more sweets during December? If so, that could tie to a candida flare-up, which can cause some of the symptoms you're listing here. Then you'd need to go off sugar and bread for a little while.
Have you been out in the cold more during this month? That would constrict blood vessel and tie in to Lyme being more active possibly. Then you'd want to get more warm.
Doesn't night sweats indicate babesia?
Couple suggestions - besides considering whether your diet has been one that feeds candida, you say you feel worse after meals. One thing to try is juicing for a little while to see if you feel better. Like with leafy greens, cucumber, celery, apple, carrots, etc.
Turmeric is very good for anti-inflammation. I take a capsule in the morning and one in the evening. The more I read about it, the better it sounds.
Who knows if it's getting through the blood-brain barrier - I'd actually to know that, but I think it is. One of my brain markers, the prolactin count, keeps dropping, getting closer to normal.
Ok, I'm going to suggest you try drinking mangosteen juice. It's an anti-inflammatory juice. When I started it, it cleared up my eye symptoms in 24 hours, and IT CAUSED MY SINUSES TO RUN FOR 48 HOURS and I didn't even have sinus symptoms. That's why I'm suggesting you try it.
There are lots of versions. I like the Mango-Xan version as it's the most tart. It's found in healthfood stores and online.
Good idea to come here and ask for suggestions.
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