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Posted 1/21/2011 9:24 PM (GMT -5)
mad  I have just been diagnosed with lyme disease after going undiagnosed for 5 years now. I have been dealing with the worst of it as of now the "Lyme Rage" where I have np control over what I say and what I do when I have a fit. I feel so sad cry because I feel that it is driving everyone I love the most away because of my outbursts. I also cannot feel 5 out of the 10 of my fingers and I cannot feel any sort of temperature in my hands and feet. I have also had to have a heart Ablasion this past January due to a heart beat of 198 or more bpm. I feel so alone in this shakehead   because no one I know in my area has this and all my doctors think I am crazy.
Posted 1/21/2011 9:51 PM (GMT -5)
HI Got2getbetter!!
Welcome to our forum!! I am sorry that you have a need to be here, but I am sure that you will find us to be a caring, helpful and understanding group - even when it comes to Lyme Rage! Many of us have had to go through Lyme Rage as well - me included.

about the only 'control' I had over it was that I could feel it coming on and would then make sure to vent away from my family. We live in a very rural area, so I would go out back, pick up a rather large, sturdy branch from a tree - and then whack the heck out of that poor tree!! smhair It really did help me to release all of that pent up anger that was coming out of me for no reason.

Are you being treated for your tick-borne infections? We have a really great thread at the top of the forum titled, "New to Lyme?...Start here!" that is packed full of good info - whether you are new to Lyme Disease or not!- and some very helpful links.

How has your family responded to the knowledge that you have tick-borne infections? If they are supportive, I would highly suggest that you find a way to help them understand what is going on inside of you. You could even get them to come on here and ask questions if that would help.

I also suffer from the neurological effects of tick-borne infections and have experienced those same issues. I like to quilt & I used to sew my fingers to the back of my work all of the time!!! blush I also had to be very careful when dealing with the hot water as I didn't feel the temp of the water until I had burned myself. Very frustrating to say the least!!

The good news is that with treatment some of the stuff like that can reverse, as it did for me. I can now feel temps & surfaces with the tips of my fingers even.

You are from from crazy - these things are very real, it's the others that just don't understand, believe me! Most Docs in this country don't even realize how prevalent Lyme & other tick-borne infections are in their own area!!

You do need to find a Lyme Disease Specialist - called Lyme-literate Medical Doctors (LLMD's)- in order to get started on the right kind of treatment.

Hang in there - you are not alone in this - we are here for you.
Posted 1/22/2011 12:07 AM (GMT -5)
I can totally relate. I just went out tonight and actually had fun without any rage at all. First time in years. This was by far my worst symptom. However, I did not know that it was lyme rage and just assumed i was angy at being sick for so long. I have finally gone on an antidepressant which has helped unbelievably. I am also on antibiotics for almost 2 years now. It takes so long and so much patience. I did totally change my lifestyle to avoid people whenever I could. I took xanax every day for many many months and now don't need it at all. Be patient. You will get there but most of all be kind to yourself. I have kept myself busy and now when I feel the rage coming on I know to keep my mouth shut and let it pass rather than get myself in trouble with my mouth which I have done one too many times. I too have one numb finger which is also better now. Hang in there. It does get better.
Posted 1/23/2011 9:11 AM (GMT -5)
Hi Got2GetBetter and welcome!

I suffered from lyme rage and I had learned that toxins produce ammonia which can cause lyme rage (it did in my case) as well as the other symptoms you mentioned.

You may want to take a supplement to rid your body of ammonia, the only one I know of is Dr. J's Neuro-Antitox CNS/PNS formula.

http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382/?tag=content;col1

http://davidjernigan.blogspot.com/2010/12/alkaline-brain-dietary-concerns-in-lyme.html

This link is where you can buy this supplement if you want:

http://hansacenter.com/productinfo.html?neuro-antitox-ii-cns-pns

Hope this helps,

Denise

Posted 1/23/2011 3:48 PM (GMT -5)
Dee javu..do you herx from the CNS/PMS formula?

Springjean..which was te new antidepressant that helped you?

Got2......It gets harder and harder to be around anyone. I bite peoples heads off and it comes out so fast
I'm afraid to be around people anymore. I find people to be so unware and my whole day is this practice of not loosing it. Like today I went out to breakfast at the only place to eat breakfast in the whole town.
The girl forgot to make my coffee and my legs and feet were too sore to get up out of the chair to remind her.
These kind of stupid things urk me and it is all because I'm in pain.
Posted 1/28/2011 12:21 PM (GMT -5)
Cymbalta is what has helped me calm down and see things like normal again.  I have also stopped taking the xanax for the anxiety. 
Posted 1/29/2011 6:24 AM (GMT -5)
Hi bucci,

No, I never herxed from any of Dr. J's botanicals..  That was another beauty of his protocol..

Denise

Posted 1/29/2011 6:49 AM (GMT -5)
I seem to remember that Dr. J believes that herxing is caused by toxins, thus his protocol includes heavy detoxing.....so I think this has something to do with why many who follow his protocol experience minimal to no herxing...

about the Lyme rage...I suspect Lyme-related low blood sugar may play a role for some people...this was my case. I found that I needed to avoid any source of sugar, even fruit, to get a handle on my propensity to bite people's heads off when I was hungry (and often didn't feel the hunger...I only felt overcome by the emotions I was feeling at the time...sadness, anger, frustration, etc.)...
Posted 2/1/2011 12:37 PM (GMT -5)

It is my sincere hope that someday we humans will figure out a reliable test not only for the obvious, healing,  but the rage.

Remember the man who went into a church killed someone and the family of the deceased understood the shooter he had "lyme."

I will look it up i think syphillis has a rage aspect to it but I  I know the spirochete is very similar to that of syphillis and is there a reliable test for syphillis?

I have had rage and seen it in other "'lyme' sufferers.  It is horrible.  And also very dangerous increasing the need 20 fold for this disease to be brought OUT of the closet.   Does anybody know of research going on?

I wonder if they are teaching medical interns about this illness so they will know what they see when they see it.

One good thing, but unfortunately not applicable for all cases is  the rash or the rashes,   I hope everybody knows to get that rash seen and to take pics of it.  I had multiple em's but did not know what they were figured some weird spider bites?  If enough people with rashes go in they will have to listen, or so it seems.

I am afraid of the rage, I have had it bad, do I think I would kill someone?  God, I hope not.but it can be bad.  It is also hard on relationships (duh)

I hope someone is out there trying to get a reliable test for this thing.

I have only been doing high vitamin c, vitamins, sleep, and I can see I am slipping, my parents are funny they wanted me to go the cleveland clinic. 

I will either go back on doxy, (no insurance) or a few slugs of wormer

in divided doses  I have been so sick I am hesitant to do it in fear it will make me sicker and I am barely hanging on now.  I just assumed it would release a toxin overload and make me sick, reading the other post is very encouraging.  I know it still might make me sick but maybe it wont. 

My husband thinks its MS, and maybe it is.  I know though where it originated because i was lucky enough to have the em's

Posted 2/1/2011 1:17 PM (GMT -5)
I use Avea for rage, it helps immensely. 10-20 drops in water is usually all it takes. You can get it here: http://budurl.com/aveamood

ALSO, as Razzle, said, EAT. If you're low on fuel, that can often either trigger a rage, or make one worse. So the first thing to do would be to eat something if you haven't in a while.

Doxy is covered by many of the $4/month pharmacy plans (Walmart, Walgreens, Target, Ralphs, etc), so even without insurance it's a cheap med. In most of these plans you get a month's worth for $4, and 3 month's worth for $10.
Posted 2/1/2011 2:08 PM (GMT -5)
goodness, maybe that is one reason my appetite has just blown up like a balloon, and to come to think of it i may be more apt to be short if I'm hungry (which is like never ending for me)

gosh razzle is smart how i wonder did she find the food/ rage connection. And thank u for the avea idea. I just took a doxy, i hated to because for years i was on abx and i had noooooo estrogen.

However, I have enough dox for probably 10 or 15 days I will either ask doc for it (LOL) or see what it costs on the net. Thanks lindaca. My guess is I will start feeling better and the rage will go away as all the other symptoms or at least get better I can't lie I dread the herx but u gotta do what u gotta do and lately I 'ain't" doin 'nothin" because I am too sick (I am hoping now if I stay on doxy this appetite thing will subside.) I was a size 3 and now am an 11 and that does not make one feel any better about oneself, my bones are too small for that weight. i feel a little hopeful : ) thanks again i needed a boost.
Posted 2/1/2011 5:32 PM (GMT -5)
Hey Roses,
Why won't you go to the Cleveland Clinic? I looked up their website. I can't tell how they would treat a chronic Lyme situation, as they don't "say" anything about it, they only 'speak' of treatment for early cases.

Even if they don't believe in Chronic LD, maybe, in your situation, it would be better than nothing??? It would at least get another month of abx available to you.

Have you ever been checked for Hashimoto's Thyroiditis? I know a lot of us Lymies have Hashi's (I do) and that causes unusual weight gain, among other symptoms. Here's a link to some good info on Hashimoto's Thyroiditis:
www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001409

Please do get in to be seen by a doctor somewhere.
Posted 2/1/2011 11:34 PM (GMT -5)
That is ineresting Traveler, I will write it down and when I get myself to the dr, ask if a blood test would show this.

i know I need to do something, passivity is not me but i know u know how tired one can get and to go anywhere means energy output and I get confused, maybe i will take my daughter with me.

I started doxy today. One thing i try to do is go to church, i have had a relationship with a hgher power since I was little and its i'd say strong and wonderful. However, hubby hasn't and he started showing an interest some time ago and we go together to church.

I don't want to mess that up I missed last time too sick. But anyway its an unusual institution this church (can't even get a seat if u are late) does have healings and as our pastor said if God wants it it wll be done, She has seen both. I may go up next time; I have gone up before for other people (hate asking for myself) and an amazing thing happened but must remain unsaid. Please notice I used higher power. This should not be offensive; it's like I detest fish but hubby loves it. This difference is fine as long as I don't have to look at it, clean it, cook it, smell it. or God forbid eat it.

thanks again traveler, I hope your having a good one!
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