LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Still on edge/no relief

 - UBBFriend: Email this page to someone!    
Author Topic: Still on edge/no relief
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 💚

Posts: 597 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
marie
LymeNet Contributor
Member # 3980

Icon 1 posted      Profile for marie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Dr Gupta has a program online.
Posts: 523 | From southern new jersey | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 597 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
Marie, are you talking about DNRS? I wrote a post inquiring about that the other day. I believe Dr Gupta is part of this?
Posts: 597 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 3771 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 597 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
"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.

Posts: 3771 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 597 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
You could try LDN, perhaps.

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

Posts: 96223 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
S13
LymeNet Contributor
Member # 42830

Icon 1 posted      Profile for S13     Send New Private Message       Edit/Delete Post   Reply With Quote 
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!

Posts: 381 | From The Netherlands | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 597 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
S13
LymeNet Contributor
Member # 42830

Icon 1 posted      Profile for S13     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 381 | From The Netherlands | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 597 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
terv
LymeNet Contributor
Member # 29410

Icon 1 posted      Profile for terv     Send New Private Message       Edit/Delete Post   Reply With Quote 
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?

Posts: 833 | From Somewhere | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
That stuff sounds VERY toxic.

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

Posts: 96223 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 597 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
hiker53
Frequent Contributor (5K+ posts)
Member # 6046

Icon 1 posted      Profile for hiker53     Send New Private Message       Edit/Delete Post   Reply With Quote 
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

Posts: 8905 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
Almost 2 weeks now, bed ridden another weekend. No feeling of relief, Zoloft isn't kicking in.
Posts: 597 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745

Icon 1 posted      Profile for bcb1200     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 95% +/- most days.

Posts: 3134 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 597 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
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

Posts: 2978 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.