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Posted 3/6/2019 8:14 PM (GMT 0)
Hello,

I started to find that i my symptoms get really bad for a week or more and then for 4 days or less i seem to get better, but then everything starts again and i feel awfull again with symptoms strong in pain in terror has it always was.

I started cefuroxime a week ago and tought i was getting better due to this new antibiotic, but yesterday my jerks, neuro pain, feet, insomnia returned with vengeance again.

Is this normal getting like waves and Windows in treatment? I thought this only happened on withdrawal from psych drugs.

Is this some kind of pattern? Any one gets the symptoms worst and then better and then worst again?

Thank you.
Posted 3/6/2019 8:56 PM (GMT 0)
It's like the world's worst rollercoaster.

For me there are some obvious patterns, like if I push myself (physically or mentally) one day, then the next day or two will be much harder. (This also can be tactile, smells, movement, noise, etc. - any stimulation takes energy to process.) Or if there's a weather system moving in, then that will knock me down, especially with very low pressure or high winds. And active infections (bacteria and parasites, especially) have growth cycles that cause symptoms to wax and wane regularly. High histamine foods will intensify all-over inflammation for me, causing symptom flares. Some people have trouble with regular hormonal changes and even full moons. And then there's just good old-fashioned herxing. You might have a pattern - like maybe you have a food intolerance or a sensitivity to something in your environment that you have not figured out yet - but it's not unusual for those of us with these conditions to feel like the symptoms are unpredictable and relentless. Makes it hard to know if you are on the right track with treatment, makes you wonder if you'll ever get better, and is so maddeningly frustrating!

Are you on any adaptogens? Do you do or take anything explicitly for detoxification? Do you take turmeric or anything else known to ease herxes and inflammatory responses? Anything specifically for nerve detox, like burbur-pinella? Any chance you are being exposed to an environmental toxin, like mold or cleaning products? Just brainstorming here.

But to answer your question, yes. This totally happens. It's crap, but it's not just you!
Posted 3/6/2019 9:10 PM (GMT 0)
Yes i have detoxed an entire month with glutahione, vitamina, ALA, all IV, and nothing. Tried burbur nothing.
Turmeric is like a maoi, studies say, so many ppl get fulled by turmeric since it wipes depression and ppl thing its detoxing, and its not.

I do know since starting antibiotics lots of yellow spots appear on my legs, and a specific rash randomly in any partir of my body. Tinnittus also with full strenght on my left ear. My ears also pop randomly, and the most mysterious symptom is i get cracks in both sides of my brain when i bread, bugs crawling in my hair, myoclonus at night non stop, cold fellings on random spots of my body, specially on both sides of my head where the terror feelings come from
All symptoms appeared graddually in two years and not even one has gotten better since it appeared.

I dont know if i am dying or recovering. and all this symptoms are killing my sleep.

By the way I am taking heavy duty meds, oxazepam gabapentin and they are not enough.

Post Edited (isitlyme) : 3/6/2019 2:40:23 PM (GMT-7)

Posted 3/6/2019 9:45 PM (GMT 0)
It is completely an up and down illness for sure, you can get flares throughout the day, the week, the year, even after you've reached remission you can flare up for unknown reasons.
Posted 3/6/2019 9:50 PM (GMT 0)
I agree with you that more symptom management makes sense. I'm so sorry you're dealing with this.

Is the prescriber of your meds familiar with how rough a time you are having? Those meds have long lists of side effects, including some of the things you are experiencing; maybe your prescriber could help to explore alternative meds? I'm sure those transitions could be rough, though.

Do you have an LLMD that you like? Are they concerned about your progress? It sounds like you need better support than you are getting. I'm sorry it's so miserable and frustrating.
Posted 3/6/2019 9:56 PM (GMT 0)
To be honest i got more side effects from herbs that from the drugs i am taking, i had myoclonus and most of my symptoms before starting drugs.
When i took Alchornea cordifolia and houttuynia and both left me wired for a couple of days could not sleep
Posted 3/6/2019 10:52 PM (GMT 0)
isitlyme,

Have you ever had any known or suspected exposure to toxic mold? Some people cannot remove those toxins from their bodies on their own. Cholestyramine can help. It is a very strong bile sequestrant that binds toxins excreted in the bile and prevents them from being endlessly recycled in the body.


I watched a video last night that Girlie had posted a link to about a Canadian woman with horrific symptoms for years. She only briefly improved from abx. Finally, they reported the doctor tried one last thing. They didn’t name the drug, but I knew from the description it was Cholestyramine. That was the first real and lasting breakthrough she got from her horrible symptoms. They stated she had toxic mold exposure in the past but didn’t elaborate on when, where, or for how long.

From what you described, sounds like the improvements are from the treatment working, but the toxins are accumulating quickly and then you feel worse again. Cholestyramine could possibly be a game changer for you. Talk to your doctor.
Posted 3/6/2019 11:04 PM (GMT 0)
I have mold on the walls because of humidity, i didnt bother yet to clean it because they are only two spots.

Cholestramine seems interesting, but it does interact with medications no?

I have mainly neuro symptoms for two years now.
Posted 3/6/2019 11:53 PM (GMT 0)
What about activated charcoal?
Posted 3/7/2019 1:59 AM (GMT 0)

isitlyme said...
I have mold on the walls because of humidity, i didnt bother yet to clean it because they are only two spots.

Cholestramine seems interesting, but it does interact with medications no?

I have mainly neuro symptoms for two years now.

Visible Mold - This sounds very bad. If mold is visible on the walls because of humidity, there is surely much more mold in hidden places because of humidty. Water damaged buildings are toxic. You will not recover in that kind of environment. You can get much sicker. Is there another place you can move to at least temporarily?

Please learn about mold. It is not to be underestimated.

https://www.survivingmold.com
https://www.paradigmchange.me
https://www.biotoxinjourney.com

Cholestyramine - Yes, it has to be taken apart from medications. Check for contraindications. WARNING: Do NOT use cholestyramine until you remove yourself from mold exposure.
Posted 3/7/2019 2:35 AM (GMT 0)
Yes, WBF - it was cholestyramine she took.

FYI - She is still doing well today... with three kids

That video is hard to watch in places - but a good ending!
Posted 3/7/2019 6:31 AM (GMT 0)
What can i do to remove mold from the walls?
Posted 3/7/2019 6:49 AM (GMT 0)
Isitlyme- Your symptoms sound identical to mine except I don't have trouble with sleep, in fact I could sleep all day.
Posted 3/7/2019 2:27 PM (GMT 0)
Kentucky,

Im curious, can you specify wish symptoms are equal?
Posted 3/7/2019 11:26 PM (GMT 0)

isitlyme said...
What can i do to remove mold from the walls?

Those links I posted have a wealth of information that I, as a CIRS sufferer, trust. There’s a lot of harmful information out there. NEVER use bleach on porous surfaces like drywall.

What room is the mold in and why is it there? Need to find and fix the cause or move.
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