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» LymeNet Flash » Questions and Discussion » Medical Questions » Still on edge/no relief

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Author Topic: Still on edge/no relief
Mountainsky
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Off the Methylene Blue and Crypto-Plus a week now. If youve read my last post this has been a nightmare.

Detoxing, eating low carb and still no relief. Purchased a portable infrared sauna yesterday through Amazon.

Horrible anxiety, on edge, irrational fears, bad OCD, pain still in the limbs and exhaustion.

Calling LLMD today then psych NP.

What is this? Did anyone have this while taking Methylene Blue for Bartonella?

Thanks 💚

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marie
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Dr Gupta has a program online.
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Mountainsky
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It's chronic stress, worry about things that I can't let go of or shake off. It's like an obsession.

My stomachs been a mess too, horrible stomach aches daily on top of everything else.

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Mountainsky
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Marie, are you talking about DNRS? I wrote a post inquiring about that the other day. I believe Dr Gupta is part of this?
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Rumigirl
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Have you tried coffee enemas to detox? They can be pretty miraculous IME. And they are pretty easy to do. They are not specific for anxiety, of course, but can help a lot if herxes or toxicity from a med is the issue---or toxicity from anything else.

And yes, consult with your LLMD and psych NP.
That kind of anxiety is awful.

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Mountainsky
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My LLMD is on vacation till next week, left a message anyway. Called my psych NP, she put an Rx through for Zoloft.

I needed something, detoxing isn't working no relief not even the slightest.

Coffee enemas huh? Can't say I've never read up on those lol.

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Rumigirl
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"Coffee enemas huh? Can't say I've never read up on those lol."

I know, they sound weird, but they totally work to detox people. It works by your colon absorbing the caffeine in the portal vein, which goes to the liver, causing the liver and gall bladder to excrete old bile and toxins.

I''m not saying that this is the total answer to what you're experiencing, but I'd be surprised if they don't help.

Of course, the Zoloft hopefully will help, and your LLMD should also help next week.

Are you treating for Babesia and Bartonella? They can certainly cause these symptoms. But first you'd want to stabilize so you don't add fuel to the fire with herxes.

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Mountainsky
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Yes, Bartonella not Babesia.

Abx for Bart really messed with my blood work. The MB ( for obvious reasons) has done something. Out of options now and thinking this is my new life. Treatment opened a can of worms that cannot be closed.

I regret treatment. It gave others their lives back, not me. I'd give anything to go back to early 2019.

I don't know of this is even herxing anymore. I am detoxing, eating very low carb, water water water and no relief. The pain in my limbs just will not go away.

I've been bed-bound the last few weekends. When I get home from work on weekdays around 4:30pm I have no more energy and am in bed by 6:30, some evenings even earlier.

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Lymetoo
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You could try LDN, perhaps.

--------------------
--Lymetutu--
Opinions, not medical advice!

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S13
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Why eat low carb?
Unless you are doing some kind of ketosis experiment, there is no need to go low carb. Where do you get your energy from?

I went high carb and it was the best thing i could do. Fruits, veggies, lots of carbs, low in fat.
Besides, if you have porphyria or HPU like me, then eating carbs is a must!

Anyway, from what i read from your earlier posts i dont think you are herxing at all. You are creating problems with your current therapies and your body is telling you clearly. A herx lasts a couple of hours to a couple of days, and afterwards you should feel better. If you are just steadily declining day after day, you are doing something wrong. It's not herxing.

Methylene Blue, are you even allowed to ingest that highly toxic stuff??? I remember using it for my blood smear microscope work, but ingesting it, no thank you!

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Mountainsky
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Yes it takes care of persister cells of Bartonella. It is safe, yes. You get it from a compound pharmacy by Rx.

Nobody can figure me out and why I'm getting worse, yes I agree you should feel gradually better after a herx, mine was the opposite.

It's heartbreaking and devastating.

BTW I go low carb to bring down the inflammation. Not so much keto. I was diagnosed with insulin resistance and PCOS recently so it " helps" I guess but no cure It's not fun.

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S13
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Well, if you call this safe:

quote:
CNS toxicity involving methylene blue
https://pubmed.ncbi.nlm.nih.gov/20142303/
quote:
Methylene blue has only recently been noted to cause severe central nervous system toxicity.
And there are probable many other reasons why methylene blue is toxic to the body. The fact that you can get a drug at a pharmacy is in no way a guarantee the drug is safe to use.

The idea that your psych symptoms are caused by coinfections is most likely incorrect. It was for me. And i dealt with all of those horrible psych symptoms for years. Thankfully no longer.

I do feel for you, you know. It is a devastating situation to be in. Not knowing why things go wrong in your body. And everything you try backfires.

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Mountainsky
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There are people who have taken it as a last resort. There's a risk in any drug.

I had to ween off my anxiety med before taking this as it doesn't go well with psych drugs due to serotonin syndrome.

Yup its hell to say the least. I really do not see my self getting " cured" at this point. I see a life of even more hard ships down the road, lots of anxiety and worry for my future.

My only outlet/distraction is my job and sometimes I fear I'll lose that too.

Now that I'm off the Methylene Blue I went back on my anxiety med. If never had anxiety this bad, I now have high BP and my heart rate is always up.

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terv
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My LLMD gave me Methylene Blue. I had to go off of it because it was turning my toilets blue. Husband was not pleased.... He banished me to one toilet and then had to use a pumice stone to get that stain out. That was the end.

When I was herxing badly my doctor really backed me off of abx until I could handle the herx.

It took my son a year to work up to a full dose of flagyl. 1.5 years to work up to a full dose of biofilm buster.

I haven't read everything so maybe you said but what are you doing for detox?

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Lymetoo
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That stuff sounds VERY toxic.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Mountainsky
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Terv, yup the toilets are stained here too.

For detoxing water, lots of it, low sugar, charcoal pills ( not every night) NAC. Bought a portable infrared sauna, haven't tried it yet though.

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hiker53
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In my opinion, I would stop the methylene blue if you haven’t already and let it get out of your system.

Give your body a rest from germ killing treatments for a awhile.

Your body and thus your mind is calling for a break!

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Mountainsky
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Almost 2 weeks now, bed ridden another weekend. No feeling of relief, Zoloft isn't kicking in.
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bcb1200
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Mountainsky:

I don't think this is a med reaction. Rather I think you are hitting the bugs and are having a massive flare. The flare is too much/too big.

I would back down for a while and see if it calms down. Then restart slowly and ramp up over time.

You can and will heal with proper treatment. Plenty of folks sicker than you are now well.

Here is a great story from Real Food Rebel. She was sick for decades, now well. Note she felt much worse when starting treatment before she started getting better.
https://realfoodrebel.com/my-story/

You seem to be panicking. I get it and have been there. I was in the same boat in late 2015. But I'm now nearly 100% most days and have had a great 4 years after going through tough treatment in 2016.

Hang in there.

disclaimer: I'm not a doctor. Please call your doc if you are concerned.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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Mountainsky
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Hi bcb,

I am currently on my lunch break and scrolled through the article briefly. I'll read more when I'm home. Thank you for posting the link!

I've been up since 2:30 am again with bad anxiety. Unbelievable.

Earlier my LLMD called me. She agreed on laying off any more meds, detox, let the Zoloft do it's job and rest the remainder of summer. Then make an appt with her after with more possible igenex tests to see where we are with things.

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Bartenderbonnie
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You might be experiencing an adverse medication affect combining Methylene Blue and antidepressants.

Methylene Blue
https://lymemd.blogspot.com/

“Methylene Blue has serotonergic effects and cannot be taken by patients on antidepressants.”

Serotonergic Medications
https://olh.ie/wp-content/uploads/2018/05/Serotonergic-Medication-and-the-Risk-of-Serotonin-Syndrome.pdf

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