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» LymeNet Flash » Questions and Discussion » Medical Questions » My father thinks I belong in a Psych Ward, Need some advice...Doing so bad

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Author Topic: My father thinks I belong in a Psych Ward, Need some advice...Doing so bad
lymetwister
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My father has been my biggest support in this battle, even now.

The problem is that he has gone with me on every MD appt. and besides the LLMD, everyone has told him and me there is no such thing as Chronic Lyme.

The Neuro doc. I was seeing and that gave me the IVIG said it sure sounds like Lyme, but after my CFS was Neg. from the LP, he quickly dismissed it.

I don't know what it going on with me, but I have never been like this. I feel so sick each and every day like many of you, but my neuro symptoms have gotten so bad. It's not just the head pain / pressure, vertigo, fatigue, lack of endurance, tachycardia, constant stiff neck, tremors, low grade fevers, anxiety, etc., but I find myself Crying every single day, as in total despair.

My head hurts so bad and percocet doesn't touch it.

I have been under so much pressure to get well. My wife barely talks to me. I can't do much with my kids. I lost my brother 2 1/2 years ago to lung cancer, which is around the time some of my symptoms started, so of course not just my father, but my sister, mother, and everyone else wants to say I only suffer from depression and that my symptoms are Psychosomatic.

Sure, I had a pos. tilt table test, and now told I have dysautonomia, but I'm being told that I should grab all of this by the horns and not let it stop me from living.

I am completely debilitated right now. I can at most run to the grocery store and back and that takes everything out of me.

I am so depressed and I take a natural antidepressant that isn't doing much. To be honest, I feel like I'm in a constant Herx since the IVIG and many don't agree with me here, but thats how I feel. I was never like this before the IVIG and I look back on my posts and I never even mentioned the word depression back then.

While my father says get psychiatric help, I tell him what about the Lyme. He says I'm imagining that I have spirochetes in my brain. I don't know where they are or perhaps it's just babs and bart, but I did test pos. for bands 39 and 41, had a low CD 57 and High C4a and a non existant Vit. D.

I Herx like the rest of you, but again, so much of my problem right now is the Neuro stuff as in I can't think straight or so it feels. I can't sit and watch TV because the noise/bright lights bother my eyes. I can't do anything and this is not conducive to a family life.

When all of this started, my first symptom was free floating anxiety that came out of nowhere. I worked in ICU's, ER's, etc. and never had any of this except a rare panic attack here and there.

I know it's Lyme, you know it's Lyme, but how am ever going to get well if I can't even handle a Tablespoon of Virgin Coconut Oil. I can't tolerate the Herx's. It makes my Neuro stuff so much worse. When I was Rifing, I was never this bad and those Herx's are terrible.

I'm scared to death and I say stupid things to him like "This is going to Kill me, I know it", or "I can't go on like this", etc.

I don't want to kill myself, I want to get well. I don't think a Psych ward would help me. I tried all of those meds when I just had the free floating anxiety and they all made me sick to no end, so I stick with the Benzos like Xanax and Klonopin.

My kids are just 7 and 8 and they don't remember when I was well and did everything with them. They only remember their dad who is so very sick every day.

What should I do ? I really don't have a life right now and I want it back so bad. I don't myself grabbing this by the Horns as I just don't have the energy. I am so worn out from whatever it is I'm going through.

Just so you guys know, I don't hear voices, I don't have a plan to end my life, I can think and talk clear even when I am in the fog so bad, it's the sensations that scare the heck out of me and that I'm gonna be stuck this way forever. I wanted such a better life for my kids and my wife. I really feel like I have let everyone down.

LT

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purplemom
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LT, My heart goes out to you. I have kids of similiar ages and I know how hard it is on family life for one spouse to be very unwell. A struggle my husband and I have not figured out how to manage yet.

Personally, I don't think you would find the rest you need on a psych ward to heal from anything lyme or depression. I think they are very institutionalized places that don't offer alot of peace. (just my opinion..)

I think we all must battle depression with this horrific disease. I have not completely answered the question of how all the psychological things should be managed. Personally, I feel if the physcial problems were fixed I would not be depressed because I could function.

Someday you will get better. Hold onto that.

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LisaS
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I don't know what to tell you. I understand everything you're saying and am lookin for the same answers. I'm so sick of this disease and what it does to people and their families.

Just remember noone can understand unless they have Lyme too. If you need to sit on here and vent then do that. People on here have been my lifesavers many times.

I hope some inspiring people with good answers come along and help you you!

--------------------
https://www.facebook.com/profile.php?id=1660435643

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losferwrds
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Have you ever tried ABX for any period of time?

It seems like you sorta bypassed the mainstream approach and went right into rife , salt/c and IVIG.

I think most people that go alternative do so after long antibiotic regimans so they kinda got the load down, are left with buggers hiding deep in the tissues, so they arn't wacking the whole bee hive with a broom stick, they sprayed it with raid first so to speak.

But its hard to say, its seems you have some either major detox issues or you are basically not treating, I thought IVIG was used in conjuction with ABX, did you ever think maybe your under treating and its just the disease progressing and you are calling symptoms herxes?

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knobs
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Sounds like the point I was at before I got diagnosed. I was so confused by the symptoms I was having and not finding an answer as to what they were.

I actually checked myself into a mental hospital because I started considering the fact that symptoms were in my head. I went on an antidepressant and stayed for two weeks.

It was very hard to be there the first few days. I was able to talk to a psychiatrist everyday and was put on an antidepressant. I had a consistent schedule which I believed helped me.

I still had lots of symptoms after leaving there but I was definitely able to do more once I left. I was diagnosed with depression and anxiety--which I agreed with because I didn't know what the heck was wrong with me.

If you're at the point where you can't go on alone anymore, I think it would be helpful to talk to a psychiatrist--be honest with him/her and they don't understand what you're going through, try another one.

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bettyg
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twister, [group hug] [kiss]

i'm so sorry for all you are going thru! hopefully the below will help you/family understand better ... print it off ok.


Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients .....MUST READ!! EXPLAINS EVERYTHING !!

written by Marian Rissenberg PhD & Susan Chambers MD,

The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/71550?#000000

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JamesNYC
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Wow LT,

I'm sorry it's come to this. I'm very sad for you and your family. I hope for better times. People who don't understand debilitating illness have a hard time empathizing.

You say your father is your biggest supporter? Then why does he think it's psychosomatic? I assume your father has read Cure Unknown and seen Under Our Skin? If not, make him.

I don't understand this statement:

"The Neuro doc. I was seeing and that gave me the IVIG said it sure sounds like Lyme, but after my CFS was Neg. from the LP, he quickly dismissed it."

What is a CFS?

So, I don't know all your particulars (all your infections, tx, etc.).

People say it's depression? Well DUH, it is! But that doesn't mean you don't have infections.

Your depression is very real, whether it's infection related, psychological, or both. It does not make handling your illness any easier. If you could get a break from it, everything would be easier on you. What anti-depressants have you tried?

Some of your sx sound very much like babs. And babs can cause deep depression. Has that been tested or treated?

There is lots of info about Bart causing neuro problems. But I have no idea how to differentiate between those sx and nuero-lyme. Maybe it's both. That would certainly mess up your brain.

I have been very concerned about your coffee enemas and other detox and supposed anti-parasite tx. Maybe you should back off on all that. Many of us here don't agree with it, especially to the extent you have been going at it.

Finally, your desperation and anxiety is well understood. You seem frantic in your posts.

Psychiatric care to cope with what you're going through isn't a bad idea. You're badly freaked out, justifiably.

Now I'm NOT SAYING THAT IT'S ALL IN YOUR HEAD! You seem genuinely sick. But the anxiety, depression, etc, needs to be addressed so you can live a more settled life.

Finally, why are you seeing anyone who's not a LLMD? We all know they don't understand TBDs. Of course they'll be dismissive. They've done that to ALL of us!

I hope things get better.

James

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Robin123
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I don't think a psych ward has anything to offer you. We are Lyme patients. A good Lyme doctor will know how to work with you. I am pm'ing you with a doctor suggestion.
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JamesNYC
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Actually, the LLMD I see here in NYC, is listed as a psychiatrist by Lyme Disease Assn.
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Cindy Ss
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I don't really know much but from the books and other people on this site, you could be an extreme case that may require IV abx?

Not sure but I think you should make you LLMD Dr. get super involved with your situation. It seems like you are on the edge, and you need quick medical insight by a LLMD. I don't think it is all in your head, even if it seems to be, it has to be this disease and you need some desperate measures to help you get out of this horrible place you are in.

I'm so sorry and which I could help more...

Just my thoughts for what they are worth.

Cindy

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Robin123
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Hi - I just did pm you with a good LLMD suggestion, but I also like James' suggestion of an LLMD psychiatrist as well. Naybe you could contact James for more info on that.
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lymetwister
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OK, here is a little more information. First off, I do have an LLMD, but I can't get to her as she is over 2 hours away.

Also, this depression I'm having goes away when I get relief from a detox such as the IV Glutathione. I swear to you guys, I feel like I am in a constant Herx since that IVIG.

I was in the ER with Babs air hunger after the 3rd dose and my Heartrate went very low with elevated Monocytes. They didn't know what to make of it, but the air hunger subsided so the discharged me.

Now listen closely, I beg you guys because this is what I've thought all along and I have read up on this and what I will say here is in the literature.

The IVIG is NOT an antibiotic, however it does give one the capacity to fight off infection because you are getting the Antibodies from over 1000 doners with each dose. Imagine if I go these antibodies and it did boost my immune system so that my body could now fight off the infection without Abx.

This would keep me in a constant Herx, make me do all of these coffee enemas which sometimes give me complete clearing for a few hours, at which time I do NOT feel depressed. I am actually feeling pretty good during these times.

I know it's theory, but it's not out of the question as some have implied in other posts. I still have alot of this in me. My body temp rose from 96.5 to 98.6 just after the 1st dose. Since then, I have had low grade temps which are coming down now, but have been 99.0-100.0 late in the day. I never had a white count until I got the IVIG, I never felt so toxic until I got the IVIG. I took the Virgin Coconut Oil in the past and never had the reactions I'm having now from them.

Given all of that, does anyone think it is possible that I am killing this stuff due to the IVIG without Abx and the new Antibodies are fighting it off. I am barely past the Half Life of the IVIG if you count back from my final dose.

Thank you everyone for your support. The depression is real, but I do feel it is exaggerated, which is yet another sign of a possible Herx. This crying I'm doing you would think I lost my entire family in a car crash (Godforbid). I know it's not rationale.

I don't know if Killing the Lyme causes Candida or if it's just part of having Lyme, but now I'm dealing with this too and never before the IVIG.

It just seems odd that much of this happened after the IVIG and not before.

Thank you all again,

LT

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Cindy Ss
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Can you do a phone consult with your LLMD, does she know you are going thru this?


It may be a good idea to inform her so that she knows what a horrible reaction you are having.

Who knows about it working as well as abx, after reading the new book written by the 13 Dr. and all the different types of treatments some use without abx and they have patients that get cured. Anything is possible! It could work for you in the end. But still scarey for you and for all of us for you.

This book has some of the most far out treatments that these Dr.s swear by a few are in Germany. I haven't finished reading not sure if any have used the IVIG...

So sorry again,

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JamesNYC
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Okay LT,

You do not mention that you've ever been on abx. You seem to be doing everything BUT abx.

What you're doing now CLEARLY is not working. You seem to not be getting better!

Abx is still the most effective way to combat TBD. If you refuse to use abx as a tx then you are limited to tx that is not working.

CindyS makes a good point, most LLMDs do phone consults.

Your first post sounded so desperate I can't see how you can afford to NOT travel the 2 hours to see her.

If you are not going to use abx and antidepressants then I am at the end of my ability to be helpful. There are many other folks here that know much more about alternative tx than I will ever know.

All I can say is I wish you well, and I hope this all starts to get better soon. I'm sorry that this has all been such hell for you.

James

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Buster
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You have already stated that this all went way downhill after the IVIG, so it has to be that or something you did close to that time...

I remember you did 4 days of high doses of it in a row, which I think most doctors would think that is overkill.

I sure wish you were in the U.S. I know 2 LLMD's here that work together and they use IVIG with lyme patients that have low immune function. They are very smart about this kind of stuff...

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coltman
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Hey sorry to hear that. It is truly horrible that some lyme sufferers indeed end up in psych ward, there is a story from a nice girl with lyme on youtube, she actually got forcefully committed by her own parents :

http://www.youtube.com/watch?v=Ul4jRluDJm0

While I am cynical and grew too thick of a skin too cry it really touched me , how horribly abused lyme sufferers could be. So sad. I hope nothing like that happens to you- be careful!

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kitty9309
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Buster-

LT is in the US.

(not to speak for him, but in case he misses that suggestion)

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lymetwister
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I am on an antidepressant and have been for some time now.

I would do abx, but if the IVIG is making me feel this way than I can't handle anything else right now.

Like I said, I was doing Coconut Oil before the IVIG and had small Herxes, now I take the same dose and I'm feel like I'm going mad. Anything is too much and I guess I have to ride out the IVIG until it is out of me before I make another move.

I know my body better than anyone, and it feels like I'm in a constant Herx as I have said all along. It's just getting out of control and I can't seem to keep up with it.

Why would I clear with IV Glutathione if I wasn't Herxing, and what would make me Herx if I'm not on anything ? This is what keeps bringing me back to the IVIG. I hope you can appreciate this.

LT

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seibertneurolyme
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I have to agree with losforwords and James NYC.

I think you are undertreating your Lyme and coinfections and the symptoms you are experiencing are symptoms of an active ongoing disease process.

The fevers and increased symptoms following the IV IgG may actually be because the treatment gave you some additional viral infections. I think that is highly possible. That might also explain your adverse reaction to the coconut oil.

Have you had your dad read any of the answers to the questions you have posted on this forum? Maybe that would help him relate to your situation better.

As I have said before the easiest way to answer your questions regarding brain symptoms is to get a SPECT scan -- I would be shocked if you had a normal SPECT scan with all your brain and neuro symptoms.

If you think you can't tolerate antibiotics then you could try something like the Buhner herbal protocol.

As for the psych option -- hubby has been there and done that. This was before he was diagnosed. All he got out of that was more confusion -- one psychiatrist was convinced he had Parkinson's even though several neuros had already ruled that out.

The Parkinson's meds did stop the tremors but he was so doped up he could hardly move or think. He actually developed the classic Parkinson's shuffle step walk from those meds. The rigidity still comes back when he is really symptomatic.

I would suggest taking some SAM-e. It did more for hubby's depression/anxiety than any of the 10 or so psychotropic meds he tried.

I sure wish we had had internet access when hubby was going through some of the same things you are. In my opinion I would trust the opinions of the patients on a forum like this much more than a bunch of standard AMA docs.

Sorry you are not getting emotional support from your family. The best way to win them over is to get on an effective treatment plan and then they can see the results.

Good luck.

Bea Seibert

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JamesNYC
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LT you said:
quote:
I am so depressed and I take a natural antidepressant that isn't doing much.
So your NATURAL antidepressant is not working. Get it? If you're on something else, you haven't been forthcoming.

Time to try a non-natural one. One that might actually work.

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seekhelp
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I thought LT said before that he/she has tried every Rx anti-depressant/anti-anxiety known to man and failed all of them.

I truly think Bea is right. She has tried so many times to help. I understand you know your own body, but I think maybe you are underestimating the power of these infections. If you feel the IVIG must be out of your system, I understand it.

After that, if you have the financial resources, TRY antibiotics. Starting with alternatives is a dangerous, dangerous road to travel. It may be the silver bullet later on, but from your posts it doesn't sound like you have the luxury of not trying the more standard treatments yet (and those for co-infections).

If your current LLMD or regular Neuro isn't pushing these, I'd dump him/her like a hot potato.

The enormous mood shifts concern me. I've never heard of that, but have no experience with it either. Anxiety, on the other hand I'm very familar with now since I got ill. I'd go for the brain SPECT too as Bea said.

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lymetwister
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5-HTP is a direct precursor to Serotonin and acts exactly like any antidepressant on the market if not better. I couldn't tolerate the SSRI or the like even in pediatric dosages which is common with Lyme patients.

People Rave about 5-HTP for both anxiety and depression. Look at all the natural things we all take that don't need a prescription, but work wonders, this is one of them. The reason it may not be working may be due to the fact that either I need more, which I can do, or because my Life is not a life right now, or could be from Herxing, and we've all been there, most of us anyway.

Look here and see.

http://www.revolutionhealth.com/drugs-treatments/rating/5-htp-5-hydroxytryptophan-for-depression

I take it twice per day. Like I said, this crying I'm getting reminds me of the Herx type of crying. Only it's a few times per day, like total despair.

BTW, I'm trying to get rid of this Candida, so wouldn't abx make that all worse. My tongue is still coated.

Also, I did see my LLMD about 3 weeks ago and she told both me and my father that I would never get better. I told her about the IVIG and she didn't even know about it. I showed her my elevated WBC counts and she had nothing to say about it either. I asked for Abx at that visit and she was not comfortable giving them to me due to my symptoms.

So, not sure what to do now as my father is my ride to wherever and the next closest LLMD is over an hour away. Perhaps I can get an appointment and have someone drive me there.

Funny thing is my Neuro doc gave me a prescription for IV Rocephin, but he told me because it didn't show in my Lumbar Puncture, he couldn't justify it to the insurance co. So, it's a prescription that I can't fill. I might try medmex but then I will have to put in my own IV, which I can do and do it all myself.

My father says he gave it to me because I kept asking, but we all know Dr.'s don't fold to us. They are just the opposite.


BTW, Coltman, thanks for that youtube link, she sounded kind of like where I'm at in her story. I will get through this. Just did an epsom salt bath and cleared up well. No crying tonight.

Thanks again everyone for all of your support. It truly means alot. I'll certainly be here for you guys when I'm better, count on that !!!!

LT

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Elaine G
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Sounds like a full blown case of Bartonella.

Check the Bart symptoms.

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zil
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I had horrible herx symptoms daily for about 8 wks. I wasn't dx'd with Lyme and had EDTA IV chelation. I wanted to die I felt so bad and had so much pain. I'm sorry about your brother his illness/death probably caused so much stress for you that depressed your immune system and this crap flourished. The IVIG I suspect kicked your immune system up and you have major die off----too much for your body to handle.

If you can afford to see a shrink I would do it. Not because this is all in your head but just for someone to talk to about the devastating consequences in your life and for your family. It will reassure them esp. your dad since he requested it.

You need bedrest and detox. Took me a couple months to not feel horrible. Sorry.

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Robin123
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Oddly enough, I got relief from Lyme-induced depression with a homeopathic remedy, pulsatilla, 12X. It worked overnight and I was high the next day and forgot why. It's just a pellet under the tongue which I did the night before. So, that's just me, but it worked.

Re the candida issue, when we take abx, we should be taking good probiotics too. And you can check out what a nonyeast diet is (just google it), that doesn't feed the yeast. Yeast likes sugar and bread.

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Buster
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quote:
Originally posted by Elaine G:
Sounds like a full blown case of Bartonella.

Check the Bart symptoms.

Agreed, he does sound like bartonella although I don't have a doubt he has lyme as well just by hearing from his test results.

LymeTwister, I don't think antidepressants are going to help this. I know of 3 lyme patients. They were put on IVIG before any lyme/bartonella diagnoses. They went down hill after starting IVIG, once they started antibiotics things started getting better.

Have you tried benadryl, prednisone, or advil or anything like that. It would act in an opposite way the IVIG did. Might make you feel better.

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lymielauren28
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Twister, my personal opinion after following your posts is also that it is an active infection causing your symptoms.

I really think you need to try some high dose, heavy duty antibiotics. You know that I'm a HUGE advocate of alternative treatment, but I also know that I couldn't have made it as far as I have without antibiotics. Please consider it.

I'm so sorry that you are so sick and I hate that your dealing with that type of depression - I've been there and it's a lonely, scary place. I hope you get it sorted out soon.

--------------------
"The only way out is through"

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Cass A
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Dear Lymetwister,

I would sincerely recommend getting some B VITAMINS for the depression and emotional reactions.

B Complex or Brewer's Yeast works GREAT for this type of problem! Drugs of any kind use up the B vitamins and can push you into emotional overload from B vitamin depletion.

B 1 works very well for mental symptoms.

Using NIACINAMIDE, about 100-200 mg every few hours, also helps for emotional problems.

Zinc deficiency can also cause emotional problems. You can test for this using a liquid zinc tester/supplement that you can get in any health food store. If you swish it around in your mouth, and you can't taste much, you're zinc deficient.

As an additional note, you could look into the KPU supplements, possibly at lower than the Klinghardt KPU protocol level. This uses zinc and also high-dose niacinamide for psychiatric problems.

In my opinion, the last place you want to be is a mental hospital. You can lose your personal rights in a heartbeat, and end up getting very damaging treatment forced on you.

Best,

Cass A

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JamesNYC
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LT,

5-htp has NOT been shown to really work. AND IT'S NOT WORKING FOR YOU!!!

OKAY???? You are pursuing a protocol PROVEN TO NOT WORK FOR YOU!

That defies common sense!

My friend, you have painted yourself into corner. You won't use REAL drugs, and the alternatives aren't working. What do you want?

Your story has touched a lot of people here. You have asked for help. We have OVERWHELMINGLY suggested REAL ABX. REAL DRUGS.

Now if you don't take our advice, why did you post?

James

[ 09-12-2009, 09:50 AM: Message edited by: JamesNYC ]

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bettyg
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coltman, thx for posting you tube on heather's story; i believe she's a member here as well...

i'd not seen this 2 part video; very well done by her.

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RDaywillcome
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Thanks coltman, you be careful too! [Wink]
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losferwrds
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quote:
Originally posted by JamesNYC:
LT,

5-htp has NOT been shown to really work. AND IT'S NOT WORKING FOR YOU!!!

OKAY???? You are pursuing a protocol PROVEN TO NOT WORK FOR YOU!

That defies common sense!

My friend, you have painted yourself into corner. You won't use REAL drugs, and the alternatives aren't working. What do you want?

Your story has touched a lot of people here. You have asked for help. We have OVERWHELMINGLY suggested REAL ABX. REAL DRUGS.

Now if you don't take out advice, why did you post?

James

Increasing you bodies ability to produce serotonin does not correlate to increase in how your brain processes or uses it, and there is no hard evidence that any of the neurotransmitter boosters ever even cross the BBB.

Prime example, you take Benzos. Why take them when you can get a GABA suppliments at Vitamin Shoppe? Or Valerian Root OR Kava Kava, Its cause they don't work and benzos do.

Its the same with natural antidepressants. St Johns may be the only one that has any validity and even that is some weak stuff. But to tell ya the truth, your are not depressed because you serotonin is low, your depressed cause your sick. You call everything a herx and its the disease waxing and waning.

God forbid you got cancer, would you go in the spare room and fire up your Rife machine and dial in the cancer frequencys or would you go to a oncologist?? Think about it
Are you doin detox channel 10000 everyday, that should help you like gluth and coffee enemas right???? If its real... Isn't there a candida frequency too, those things cure everthing, I bet there is a number for depression and anxiety too...

Do yourself a favor and get on some ABX already or in few months when the IVIG is out of you.

If ya have candida and parasite, get on prescription meds for candida and parasites

For gods sake your friggin RN and buying into all this internet snake oil mumbo jumbo. You've been in the ER, you know western medicine works, give it a chance. The majority of lymies get better on abx, the rest make guys like brian rosner rich.

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JamesNYC
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Losferwrds,

quote:
But to tell ya the truth, your are not depressed because you serotonin is low, your depressed cause your sick.
Not necessarily true. Depression is depression whether it's psychological or physiological. According to my psychiatrist it should/can be treated regardless of the cause. The illness may very well be reducing serotonin or other chemicals or messing with receptors in the brain.

St John's wort has been shown in several clinical studies to not work. (Now, if it's a placebo, and it works, great!). But whatever LT is on ain't working.

I hope LT will listen. Oh well, we tried.

James

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seibertneurolyme
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LymeTwister,

I have talked about this in other posts. Before hubby was diagnosed 8 years ago and when he was shaking 24 hours a day one MD sugested he take 5-HTP. It would actually stop the tremors for maybe an hour. He was taking 50 mg of 5-HTP just about every hour 10 or 12 times a day. He stopped after 2 or 3 days because he felt so much worse even though the tremors were reduced.

I later learned that 5-HTP and the SSRI's which made him feel so bad all were causing his quinolinic acid to be elevated.

He actually had some bloodwork done around the time of his 5-HTP experiment that showed elevated quinolinic acid and also elevated breakdown products from serotonin.

Quinolinic acid is a neurotoxin. Buhner explains this in his book. In the presence of brain inflammation serotonin is converted to quinolinic acid by an alternate pathway.

For several years hubby continued to take a small dose of 5-HTP before bedtime even after his experiment backfired. He would go to sleep just fine and wake up in a couple of hours with dry heaves and tremors.

IV Ativan calmed things down so he could sleep. He tried many seizure meds and a couple of sleep meds which did not help. Obviously if the problem was elevated quinolinic acid those drugs would not help. IV antibiotics were somewhat helpful, but the effect didn't stick.

After reading the Buhner book he added Resveratrol to his supplements. By taking that to block the conversion to quinolinic acid he could take the 5-HTP to sleep and not have the nightly seizure-like spells.

It took probably 6 months to rebuild his serotonin levels to normal -- by taking the 5-HTP and P5P (pyridoxal 5 phosphate which is activated B6). At that point he stopped the supplements and could get the 10 or 12 hours of rest he needed.

It sounds to me like you need to find another LLMD. Hubby did have one once who told us that not everyone gets well. That may be true, but if the doc does not know what to do to help or isn't willing to try then it is time to move on.

The thing that has helped the most with hubby's tremors is treatment for Bart. The tremors and myoclonus actually went away about 90% or more back in January and February of this year. Then there was a shortage of the herb Cryptolepis which was working on the Bart and maybe mycoplasma as well.

We haven't been able to get back on track yet, but remain hopeful. Hubby is working with a physical therapist and getting stronger every day. We are pretty sure his Babesia is gone. The bart and/or mycoplasma seems to be the sticking point for him.

And yes, Benadryl will help with tremors. Had to put hubby on this. Between that and IV Phenergan he can control the tremors and prevent the severe muscle rigidity and dystonia symptoms. But he does take oral lecithin (cheaper than phoaphatidylcholine) to make sure his liver keeps working up to par. Benadryl and Phenergan are both anticholinergics.

The IV Ativan quit working after 4 or 5 years. For a while we were stuck using IV Demerol just to control the freezing up episodes. The ER docs thought hubby was having muscle rigors -- a couple of LLMD's were the ones who figured out it was dystonia. None of the neurologists had a clue.

As I have said before, your symptoms can get much worse. Hubby went for 2 1/2 years without being diagnosed or treated. Reading your posts is a lot like stepping back in time.

Hubby has never had an LLMD closer than 5 hours away. At one point we couldn't even find a PCP closer than 5 hours away. Just be glad you live in an area where there are multiple LLMD's to chose from.

Please get some real help from a real LLMD.

Bea Seibert

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Tincup
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When what you are doing makes you so miserable...

The solution is so simple...

Just STOP doing it!

When you are feeling lower than a snake's belly ... it is extra hard to help yourself and think clearly.

Soooooooo... good for you, for asking for help.

[Big Grin]

MY opinion... and I am NOT a doctor... and many will disagree with me.. except for the ones this advise has helped in the past.

I think you SHOULD listen to your body. ALWAYS!

I think it is an overload of "junk", as you said.

I know the feeling the IV glutathione can produce... and I believe from your explanation you are on the right track there.

Sooooooooo.. to get out from the deep hole you've fallen in...

First, stop trying to make all this so complicated and heavy on your brain.

K-I-S-S... Keep it simple stupid.

Then...

Put on the table two things.. and only two things.

1. what IS helping you to feel better.

2. what is NOT helping you to feel better.

Then focus on getting the things that ARE making YOU feel better.

Leave the rest behind until YOU are YOU again and can think clearly.

Your body will love the break and will thank you for it.

Then, once stable, regroup, review the situation and go at it again...

SLOWLY!!!!

Good luck!

[Big Grin]

PS. If you stop focusing on all the stuff that makes no never mind.. and release the stuff that is swirling through your mind ...

You CAN find a way to get the glutathione.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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METALLlC BLUE
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It sounds to me like you need help from an LLMD who is closer than 2 hours away (or 1 hour etc). You also likely need a simple therapy like Tetracycline to support the IVIG. On top of that, you clearly need detoxification therapy. That could be Nebulized Glutathione, or even just Chelex, ALA, NAC, Chlorella combined.

I'm scratching the surface here since I didn't read every reply. If you need help looking for an LLMD who might be closer (and competent), e-mail me at [email protected] Having someone say you'll never get better just isn't true. Many patients get better -- including some who were extremely sick, like yourself.

Tetracycline won't make the Candida worse -- at least it hasn't in the vast majority of people. You may wish to use Oral Nystatin or Diflucan -- perhaps even VFEND if it's really severe. I'd start with Nystatin, it's much safer.

Additionally, if you are in-fact in a state of Herxheimer reaction, the key to this problem is simple. Slow down, reduce treatment until your body recovers some ground. This is what the best LLMD's recommend and it works. You will do more damage trying to force your way thru a herx than if you slowed down and let it subside to some degree.

You also need additional treatment with Malarone. Babesia should be a primary concern as it's excessively immunosuppressive. You can do all these therapies while on IVIG and the Tetracycline prescription should be easy to obtain to start the process. Don't go with Doxy at this time (in my opinion) unless you're using Dorxy. Tetracycline would be the better option.

Nebulized Glutathione that you can use at home, as well as Baking Soda (You can get it from Vitacost) can be used to detox too and it's cheap like Charcoal. You can use that too but avoid taking all these with your medications.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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kitty9309
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LT-

Are you in DC as your location states?

I am very close to you and we have a few LLMD's nearby.

Can someone drive you? I am unable to drive myself these days and rely on others to help get me there.

~Kitty

[ 09-12-2009, 04:18 PM: Message edited by: kitty9309 ]

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sutherngrl
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Anything that even remotely resembles an antidepressant actually makes me more depressed. I have tried too many times and it always is the same.....increased depression. Some people just can't use antidepressant, natural or not.

I so sympathize with what you are feeling. I take Xanax to control my anxiety which when controlled seems to keep the depression at a level I can deal with. Its what works for me and is what has saved my life through this whole ordeal.

Depression could be from ongoing infection; but also who that is chronically ill does not suffer from some form of depression; especially when they don't seem to be getting better.

You said you have been under so much pressure to get well. Well that sounds like it could have come straight from my mouth. I have pressured myself to death, put time lines on when I think I should be well, and that pressure is a huge trigger for depression. Somehow you have to let go of that pressure. It goes against your recovery.

I vote for giving antibiotics a go. I have nothing against other methods; but believe you need antibiotics first to get the bacterial load down. You need antibiotics to penetrate deep where the spirochetes reside. Antibiotics actually kill the ketes.

Okay, so I don't claim to be an expert on IVIG, but if it only boost your immune system and if the ketes are not hanging around in your blood, then I don't see how the IVIG does that much good. If you do boost your immune system and then make antibodies against the ketes, what good does that do if the ketes are no longer in your blood, but are deep inside your tissues and tendons. You need antibiotics that can go to where they are hiding.

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losferwrds
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Ya need ABX, you are an RN, you have seen what meds do,

Its like VD, would ya give a someone with herpes or syphilis a rife machine, 10000 ius of C and 10ooo ius of sea salt wake up lyme brain, your treating yourself with snake oil.

Even IvIG, I googled the **** out of it, its used with ABX

Your NOT HERXING

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mwhite18
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losferwrds, my LLMD gave me cat's claw and recommended rife for my herpes [confused]

ABX are the base mr twister

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METALLlC BLUE
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What that person means is that you use "proven" therapies first for primary support until those are not useful. Supportive therapies or alternative therapies can be used together in some cases as well but it's evidence based treatments that are most sensible unless the risk is too high.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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lymielauren28
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Twister, you alright?? Check in and let us know you're okay...

--------------------
"The only way out is through"

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MorningSong
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LT-

We have been very concerned about you. I have prayed for you often for an answer and that you would start to feel better. You made the following statement in a previous post:

"Funny thing is my Neuro doc gave me a prescription for IV Rocephin, but he told me because it didn't show in my Lumbar Puncture, he couldn't justify it to the insurance co."

Im not so sure you need a LP to justify IV Rocephin. My Primary Physician (before I new about LLMDs) put me on IV Rocephin and all I had was a positive Western Blot and head pain. Insurance covered it.

I agree with others. What your doing now does not seem to be working for you and abx could very well help. Since you have a prescription for IV Rocephin as you stated earlier, why not consider this since it sounds like you already have a PICC/Port from the IVIG.

Also, I think too it would be good to find another LLMD. One that speaks life to you, and not words that you never going to get better.

Also agree with Bea, that a Brain SPECT would be helpful since it provides more detail than MRI.

My heart goes out to you and I will continue to keep you in my thoughts and prayers. Please consider the abx (since you already have a script).

If we keep doing the same thing, then we are going to get the same result. Please, my friend, consider going to another LLMD and going on abx.

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glm1111
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UPDATE: Twister sent me a message that he was on IV rocephin, but didn't say where he was. Maybe in a psyche hospital?

I don't know. I hope this helps calm things down for him. He wanted me to let everyone know,

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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sammy
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Thank you for the update Gael.

Hang in there LT. I've been thinking of you and praying for you and I hope that Rocephin will bring you some relief.

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losferwrds
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quote:
Originally posted by mwhite18:
losferwrds, my LLMD gave me cat's claw and recommended rife for my herpes [confused]

ABX are the base mr twister

I hope you are being sarcastic
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feelfit
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Twister,

I feel your pain and frustration. The complete loss at understanding this darned disease. Whatever it is that you are experiencing is real, most likely a result of the disease process.

The last thing that you need right now is tough love....maybe some think that that is what they are giving you....IDK.

What I do know, is that you need to know that someone gets it, I do. Psych drugs have helped me little, I cry a lot too. It is a result of the disease. I am here if you need me.

You know where to find me, take care.

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bettyg
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twister, praying you will get the much needed help you need at this time in your life.

may god watch over you and guide you in your lyme directions of life [Smile] hugs/kisses

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MorningSong
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LT-

Just wanted to let you know I prayed for you this morning and will continue to do so. Please forgive me if I came across as bossy or needing tough love in my previous post. I did not mean too -- I just care because you have been through so much.

Best,
MorningSong

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Wimenin
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My two cents...

Get yourself to a LLMD that you feel comfortable with, someone who is not only a LLMD, but also IM doctor, and will look at your complete body situation.

I honestly think you need to:
(1), get a formal clinical diagnosis from a LLMD who will go through all the symptoms and make a determination if you have lyme. Remember, lyme is a clinical diagnosis...
(2) if you are found to have lyme, then start up the lyme protocol that Dr.B recommends as a framework with your LLMD fine tuning the supplements, based on your current symptoms...
(3) come to grips that if you do have lyme, you will need to kill the bacteria that is at the root of the problem, which means taking prescription antibiotics.
(4) supplement the other areas that you are most likely defficient, such as magnesium, D, B, etc, etc..
(5) write down everything that you are taking in order to keep track of your progress, and keep track of your symptoms and severety as well.

You also need to realize that if you have lyme, and a lot of your symptoms sound like neuro lyme, you are going to have to go through hell, likely heavy herxing, in order to clean everything out. Imagine it being like a tunnel of terror that is one way in, one way out.. you have to endure the pains as you get back out of it.

If you've got a heavy load of lyme in the brain, every time you herx you will have toxins in the brain. Toxins in the brains=neuro problems, cognitive, emotional, depression, sensory overload, etc, etc..

btw: Crazy people dont know theyre crazy, they just are. The fact you can rationalize everything going on with you is a strong indication that you dont need pyschiatric help, but, if you feel you need it, be prepared to have the medical profession tell you its all anxiety, that you have somatization disorder (sp?), that its a mental problem, not physically generated. The problem is, if you do have lyme, its a physical ailment that is creating mental problems...

But go into any session with your eyes wide open that the general MD profession may not believe you. It doesnt matter what they think.

.......Its time to take command, be confident, get propert treament and back into your life...!!

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seekhelp
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This line sure caught my attention. This is what I wonder every day - is this true? Did all who got out of hell here go through hell?

quote:
Originally posted by Wimenin:
My two cents...

You also need to realize that if you have lyme, and a lot of your symptoms sound like neuro lyme, you are going to have to go through hell, likely heavy herxing, in order to clean everything out. Imagine it being like a tunnel of terror that is one way in, one way out.. you have to endure the pains as you get back out of it.



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Wimenin
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The main point I was making, based on myself, was that your first symptoms are usually your last ones to leave. In other words, if your main problem was first headaches, then anxiety, then joint pains, ..you may find that joint pains ease up first, then your anxiety dwindles, and the headaches linger the most till the end. That was the exact experience I had, and it reasons that if those were the areas that were hit the hardest before getting treatment, those would also be the areas that had the most damage, and thus would take the longest for the body to heal.

If dealing with the strong neuro stuff... youre talking about a whole range of "anything goes" type of oddities from different pains, twitches, emotional, cognitive, sensory, cardio, sexual, hormonal, digestive... basically...anything in your body since the cns is involved in everything in the body. If there was damage to the brain, meniges inflammation, etc, then anything involving the brain would be affected as it heals itself over time during treatment.

As for the full herxing non stop, flu like, I think it depends on your toxin load, your bodies ability to handle the toxins, your immune system strength, your diet, stress levels, ..etc, etc.

Does it mean everyone has to have full tilt herxes 24-7 to get better.. I dont think so. But it wouldnt suprise me if you have the same symptoms reappear that you started with once on treatment as you flush that stuff out of your system.

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