I'd like to reach out to others with dissociation

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Aerose91
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Date Joined Feb 2016
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   Posted 2/16/2018 12:12 PM (GMT -6)   
Dissociation has been my first and worst symptom from the beginning. It is demonstrable. I stopped feeling reality in June, 2012 and i didnt even have a diagnosis for 3 more years. Meanwhile, it's gotten so much worse since then. I've recently learned that i have a serious histamine issue and that's why nearly all foods make me worse. But by "worse" i mean immediate increase in bright light sensitivity and dissociation, then that is where it stays. As of now only coconut milk and chicken don't make the dissociation worse.
It's demonstrably bad. I can't feel time, any emotions or feelings at all. The world to me is flat and hollow and for over a year i was terrified of the rain because it felt like the walls of reality were collapsing in on me. Bright light sensitivity on top of it makes being out in the sun damaging, especially mid day. This is the same being under flourescent lights.
I believe i figured out why i had no results on Buhner's herbs- the alcohol in the tinctures. Alcohol is a major histamine. Even if i simmer them in hot water there is still a little alcohol left and my brain just goes nuts. After 7 months of Buhner herbs, my brain and dissociation are in a worse place than when i started.

Does anyone else have this as a prominant symptom? I don't mean disconnected from reality sometimes, i mean extreme, 24/7 dissociation.

Post Edited (Aerose91) : 2/16/2018 11:20:46 AM (GMT-7)


Girlie
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Date Joined May 2014
Total Posts : 32685
   Posted 2/16/2018 12:20 PM (GMT -6)   
Aerose - I'm so sorry you are dealing with that. It must be extremely difficult for you on a daily basis.

Have you thought about alcohol free tinctures? or capsules?


HawaiiPharm has alcohol free...but I haven't checked their list to see if the Buhner herbs are all available:


/www.hawaiipharm.com/alcohol-free-liquid-herbal-extracts
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Aerose91
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Date Joined Feb 2016
Total Posts : 391
   Posted 2/16/2018 12:24 PM (GMT -6)   
Thanks Girlie, it honestly is horrific.

I was thinking of trying tea. I spent so much money buying tinctures and making my own that i cant afford to buy more over again. I just started Clarithromycin with my new doc so im at least on something for bartonella but i see value in taking the herbs on top of it. I could just order dry herbs of knotweed, olive leaf, eleuthero, hawthorn, red root, isatis and try a daily tea. Hopefully that could help.

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1682
   Posted 2/16/2018 12:39 PM (GMT -6)   
Aerose,

I take some of my herbs as dry powder mixed in water - knotweed, cat's claw, cordyceps, ashwaganda, and some supportive herbs like dandelion root.

I'm glad to hear you found out about the histamine. Is a doctor helping you deal with that? If you get adequate help in that area, it may well reduce the awful psych symptoms you have, as it should reduce brain inflammation.

I just want to say, too, that I have so much respect and admiration for you. I've never heard anyone suffer so much for so long and still keep searching for answers. Praying you'll get all the answers you need to turn the corner recover your life back.

Don't despair all that time on the Buhner tinctures, though. You were taking sky high doses of herbs for months. It very well may have made a big dent in the infection load. If you can get good help with histamine (and maybe mast cell issues too?) and reduce the neurotoxins, you might find yourself well. I sure hope so.

Post Edited (WalkingbyFaith) : 2/16/2018 11:46:36 AM (GMT-7)


Girlie
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Date Joined May 2014
Total Posts : 32685
   Posted 2/16/2018 12:42 PM (GMT -6)   
Aerose91 said...
Thanks Girlie, it honestly is horrific.

I was thinking of trying tea. I spent so much money buying tinctures and making my own that i cant afford to buy more over again. I just started Clarithromycin with my new doc so im at least on something for bartonella but i see value in taking the herbs on top of it. I could just order dry herbs of knotweed, olive leaf, eleuthero, hawthorn, red root, isatis and try a daily tea. Hopefully that could help.


Aerose - you should contact Traveler. She can help you with the whole herbs/tea.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 2/16/2018 12:53 PM (GMT -6)   
Aerose,

Take a look at this thread. There's some information about histamine that may help you.

/www.healingwell.com/community/default.aspx?f=30&m=3978729

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 391
   Posted 2/16/2018 1:03 PM (GMT -6)   
WalkingbyFaith said...
Aerose,

I take some of my herbs as dry powder mixed in water - knotweed, cat's claw, cordyceps, ashwaganda, and some supportive herbs like dandelion root.

I'm glad to hear you found out about the histamine. Is a doctor helping you deal with that? If you get adequate help in that area, it may well reduce the awful psych symptoms you have, as it should reduce brain inflammation.

I just want to say, too, that I have so much respect and admiration for you. I've never heard anyone suffer so much for so long and still keep searching for answers. Praying you'll get all the answers you need to turn the corner recover your life back.

Don't despair all that time on the Buhner tinctures, though. You were taking sky high doses of herbs for months. It very well may have made a big dent in the infection load. If you can get good help with histamine (and maybe mast cell issues too?) and reduce the neurotoxins, you might find yourself well. I sure hope so.


I was hoping that, that the amount of herbs i took would have at least dented the bartonella so abx may be able to help sooner.

I can't take powdered herbs because it gives me diarrhea like, instantly and is so annoying. I know i have gut issues but I've been "fixing my gut" for over 5 years and it hasn't changed anything. Does bart (and possibly babesia) have a particular affinity for damaging your digestive tract? Prior to getting sicl i was a nutritionist and personal trainer so my diet was never poor enough to cause this much gut damage

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 391
   Posted 2/16/2018 1:05 PM (GMT -6)   
Also, thank you for your support, guys. Most days i manage and accept it but sometimes it's just unbearable. The humidity rises, or i eat one wrong thing and my whole life changes. Especially after 7 years, it gets tiring

hammer8
Regular Member


Date Joined Oct 2017
Total Posts : 61
   Posted 2/16/2018 1:09 PM (GMT -6)   
I had constant dissociation when first treating for Babesia and herxing from it - probably lasted around 2 months. From what I have read, dissociation can be either bart or babs, but from my experience it was definitely babs.

CSA, which is Buhner rec for babs, caused significant herxing and some improvement, but I had to hit babesia extremely hard with other meds to get to where I am now. Mepron/zith didn't do anything, but CSA, Enula, primaquine, plaquenil, artemisinin and clindamycin together seem to be pushing me closer to 100%.

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 391
   Posted 2/16/2018 1:21 PM (GMT -6)   
I suspect that i have babesia and so does my doc even tho i never tested positive for it. He recently did the full igenix panel, including FISH test for babesia and all came back negative. So, he took a blood smear from me and said he saw things that looked like protozoa but possibly not babesia. I did all the babesia herbs and got nowhere so maybe we will start treatment on that soon

Traveler
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Date Joined May 2007
Total Posts : 36310
   Posted 2/16/2018 1:49 PM (GMT -6)   
Aerose, have you been checked for Mast Cell issues? If you have those, you will need to see a very highly qualified allergist that is very good at treating Mast Cell issues in order to get far with your treatments.

I am fairly good friends with another Lyme patient that has severe Mast Cell issues, and they can't take much of anything, because they are literally severely allergic to the toxins released by the dying bacteria. They are still looking for the right way to approach this, but will *likely* have to take steroids to control the inflammation in order to proceed with treating these infections in order to get the mast cells under control - a very complex and difficult journey....as if this wasn't hard enough.

Oh, I was going to comment that I still have some issues myself, but I know that it's the way these infections have messed around in my brain, not that I don't love those people, or what I'm doing, or anything else. I do seem to still be making progress on this too, but I honestly don't know what I'm doing that is helping (other than maybe the kudzu root and turmeric/coconut oil???), but I know there are certain things that I'm doing that are helping slowly. So, I want to encourage you to hang in there.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Post Edited (Traveler) : 2/16/2018 12:52:24 PM (GMT-7)


WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1682
   Posted 2/16/2018 1:56 PM (GMT -6)   
Aerose91 said...
. I was hoping that, that the amount of herbs i took would have at least dented the bartonella so abx may be able to help sooner.

I can't take powdered herbs because it gives me diarrhea like, instantly and is so annoying. I know i have gut issues but I've been "fixing my gut" for over 5 years and it hasn't changed anything. Does bart (and possibly babesia) have a particular affinity for damaging your digestive tract? Prior to getting sicl i was a nutritionist and personal trainer so my diet was never poor enough to cause this much gut damage


Interesting you mentioned this. I didn't know you had gut issues. I do believe bartonella especially can cause gut dysfunction. A new member, Dollface29, confirmed this. Dollface only has bartonella and not Lyme/co after being bitten by an infected kitten. Dollface posted a lot of great information on bartonella in one of your old posts and some others. Be sure to take a look.

I'm sure I've had Lyme/co lifelong. I've also had lifelong constipation without any real issues until 3 years ago when my chronic Lyme symptoms got exponentially worse and my intestines went into lockdown mode. Had the whole gastro workup and got diagnosed with IBS with a useless suggestion of "try Miralax." I believe Traveler has had similar gut issues to mine.

If you haven't been on long term abx and have no other explanation for the gut issues, then I would suspect Bartonella may have something to do with it.

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1682
   Posted 2/16/2018 2:08 PM (GMT -6)   
I just saw Traveler mentioned kudzu root. I started taking it about two months ago, and I suspect it is what is helping my head symptoms. For the last few weeks, I've had much less weird pains in the head, psych symptoms, and feeling like my brain is inflamed. I only take 15 drops, but it seems to work for me. For the past week I've noticed my chemical sensitivities are better after being awful for months on end. I can't say for sure the kudzu did all that, as I also added phellodendron and Bidens at the same time I added kudzu. All I know is my head symptoms have been better for almost 2 weeks now, while my body symptoms are worse than they've been since a year ago.

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 391
   Posted 2/16/2018 3:04 PM (GMT -6)   
Traveler-

My new doc tested me for Mast Cell Activation (tryptase) and it came back normal. He said i dont have MCAS but the infections can stimulate your mast cells so you have histamine issues while not having MCAS per se. Now that I'm focusing on histamines I'm realizing it's a big part of my story, and it sucks royally. I can't eat anything. A sip of green tea, a single dropper of tincture, a bite of cucumber and my dissociation gets blown out, my energy levels drop and i get super irritable. I even have problems with water sometimes.

I eat every other day as it is but the only thing that keeps me at my base level of dissociation is not eating at all which obviously isn't sustainable. My current doc seems knowledgable on the mast cell issue so hopefully he can monitor it. He gave me a couple antihistamines but they made my brain so loopy and spacey that i was running red lights and forgot how to tie my shoes, so i had to stop.

Im going to order some knotweed, red root, olive leaf, eleuthero and isatis and try tea. I wish i could get some sida leaf but it's too expensive. Im going to hold off on the houtt for now since im on the abx

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 391
   Posted 2/16/2018 3:08 PM (GMT -6)   
Walkingbyfaith-

I didn't have gut issues until getting sick and I've been told bart can run havoc on your gut. I guess also histamine issues usually indicate gut problems so i assume i do. Navigating this is a real nightmare.

I tried kudzu for a couple months. It didn't do anything for me

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 2/18/2018 9:14 AM (GMT -6)   
The testing process for MCAD is apparently more specific than most docs realize, and initial tests often appear negative. It might be useful to try some of the meds for it anyway, as they're all antihistemines, and just see if this helps. Some are even OTC.

I would try boneset tea and drink it on the warm-hot side. I found it did hit babs and bart both to some degree, but it's really one where tea is *preferable* to tinctures anyway and has been used a lot traditionally. You could also try making herbal infusions -- look at Susan Weed's herb site and she explains all over it how to do this (basically, you put a lot of the herb in a large mason jar, pour boiling water over it, let it steep a really long time, then drink the "concentrate" but could start w/ pretty small doses. Some herbs can also be boiled in a combination of milk and water to make an extraction by boiling down to half the original size (at a simmer) that you then refrigerate and take in small doses (i.e. a tablespoon at a time). Many herbs can be extracted in vinegar if there is a vinegar you can tolerate (but would need to sit like 6-8 wks to tincture in that).

I had a lot of dissociation w/ babesia and still do on and off but not on the level you describe, which sounds terrible. I hope you can get something to work.

Joe183288
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Date Joined May 2017
Total Posts : 65
   Posted 2/23/2018 9:36 AM (GMT -6)   
this issue sounds just like me. I believe my disassociation, depression, etc all comes from the braing fog I experience. I've had the fogginess for over 3 years, and it's by far my worst symptom. The lights make my brain fog much worse, especially florescent lighting. I am usually 90% ok in the morning and when I get into work 90% goes down to about 25%. I guess I need to look to see if my dr has tested me for mast cell issues, as I'm not sure if they have. I'm also not even sure anymore if I have Lyme disease. I'm on month 13 of pulsing abx with very minimal improvement(the biggest improvement has been my moodiness and depression is much much better). I'm starting to look at mold and have been taking cholestyramine the last few weeks. I think it may be helping some? who knows, I feel like I've been sick so long that this is now my "normal" and it's hard to tell if I'm doing better a lot of times. Have you looked into mold?

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 391
   Posted 2/23/2018 10:39 AM (GMT -6)   
Joe183288 said...
this issue sounds just like me. I believe my disassociation, depression, etc all comes from the braing fog I experience. I've had the fogginess for over 3 years, and it's by far my worst symptom. The lights make my brain fog much worse, especially florescent lighting. I am usually 90% ok in the morning and when I get into work 90% goes down to about 25%. I guess I need to look to see if my dr has tested me for mast cell issues, as I'm not sure if they have. I'm also not even sure anymore if I have Lyme disease. I'm on month 13 of pulsing abx with very minimal improvement(the biggest improvement has been my moodiness and depression is much much better). I'm starting to look at mold and have been taking cholestyramine the last few weeks. I think it may be helping some? who knows, I feel like I've been sick so long that this is now my "normal" and it's hard to tell if I'm doing better a lot of times. Have you looked into mold?


Hi joe,

Sucks so bad for me to hear other people who feel like this. I have done a comprehensive mold therapy. I actually got rid of all my belongings 3 years ago and drove out to the desert where i lived off the grid. It did help thin the dissociation a little, but it never improved past that. I learned that mold is an issue, but not the only one. Since then, i have declined though and strict mold avoidance doesnt do much anymore
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