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jc27
Regular Member


Date Joined Sep 2007
Total Posts : 176
   Posted 7/7/2010 6:41 PM (GMT -7)   
I've had Lyme for about 24 years now. I was diagnosed in 2005. It's an extremely tough battle. My sympathies go out to all that have it. I'm asking about Rage not because it is one of my symptoms but because my son gets attacks of rage. He has never been diagnosed with Lyme but I believe that he may have it. He has OCD, occasional night sweats, has had tourette symptoms and sleep disorder (insomnia). He was tested for Lyme a couple of years ago but it came back....... you guessed it... negative. He did have one slightly positive band for Babesia but refused to believe that he may have the infection. He's completely irrational at times especially if I try to talk to him about possibly having this disease. He's had these issues as long as I can remember. I've had Lyme since before he was born and was wondering if I could have passed onto my wife and onto him. He's now 21 and I can't force him to get tested. It's also hard to convince my wife that he may have Lyme. She believes that he is just totally selfish and just wants him out of the house. Before I was diagnosed she didn't believe me when I told her that I was sick. Since my diagnoses 5 years ago I get little sympathy. It's more about how hard my disease is on her. So I'm not getting much support in trying to get my son on the right path.
 
I've read some posts on this site before about Lyme rage and was wondering what treatments people did and how they got their rages to subside? 

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2057
   Posted 7/7/2010 7:26 PM (GMT -7)   
My sympathy goes out to you. I have suffered from lyme and lyme rage for 5 years. Actually almost drove away a dear family member cause I didn't know what was wrong with me, just raging all the time. I too wonder how much lyme can get passed on to family members as I often wonder if my husband has it, some very similar lyme symptoms, but he thinks I am ridiculous. It is my opinion that they know so little about this disease we cannot be sure of anything. Have you tested your son for bartonella and have you tested through an LLMD?

jc27
Regular Member


Date Joined Sep 2007
Total Posts : 176
   Posted 7/7/2010 7:40 PM (GMT -7)   
He was tested through an LLMD and the Lyme and co-infections were negative except for an ever so slight positive band for babesia. He was bitten by a deer tick when he was about 6 years old but was put on a couple wweek course of antibiotics.

He has quite a few red flags with the night sweats, OCD, he loses his keys, ipods, you name it he loses it, along with the insomnia and tourette like tics.

What do you do for treatment?

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4151
   Posted 7/7/2010 7:58 PM (GMT -7)   
I would recommend treatment for Babesia first and see if that helps anything, since he does have the "slight positive" for it. Treating the Babesia may actually bring up the immune system enough to get a positive on a Lyme test, too.

about the rages, has he been seeing a counselor for help with anger management?
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, homeopathy.


jc27
Regular Member


Date Joined Sep 2007
Total Posts : 176
   Posted 7/7/2010 8:31 PM (GMT -7)   
He has been seeing a counselor.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/8/2010 2:45 AM (GMT -7)   
So his co-infection test for Bartonella was negative too? Bartonella can cause rages. I have them and they were getting really bad for me. I did start treatment with levaquin but had to stop abruptly because my liver enzymes went up so I can't do much with antibiotics at all. I did notice that since taking Tramadol for pain, that my rages have decreased alot. I know, a bandaid, but that's what helps me for now. The only time I start getting angry is when I am in a bad flare(arthritis) and feel terrible, but it is not nearly as bad as before. I know he can't just get on Tramadol to control it, but I thought I'd let you know what helped me.

I'm wondering if copying some information about Lyme Disease and babesia symptoms and giving it to him to read would help him realize that he could have this?


Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


achievinggrace
Veteran Member


Date Joined Nov 2009
Total Posts : 2545
   Posted 7/8/2010 7:30 AM (GMT -7)   
Hi jc27,

I'm sorry that you don't have the support you need in your fight against Lyme. And I'm especially sorry you have to watch your son go through this hell and not be able/allowed to help him.

I also had untreated Lyme for more than 25 years. The rages came on gradually and I thought I had to own them, that they were a part of my character. Controlling them got harder and harder and I was saying things I didn't mean or want to say. At 21 your son is still developing his character, and probably feels that trying to remove one of these facets of his behavior is an attack on directly on what he sees as his persona. I couldn't see how things could be different when I was in the hold of the disease, I doubt he can either as it is all he has probably known.

Your best bet to help him is the same as you would approach any wounded or sick animal; calm, quiet, loving care. Keep telling him gently that it doesn't have to be this way. As another member suggested, offer him information. www.ilads.org is an excellent source of information. In particular, they have a pamphlet on Psychiatric Lyme disease that you could leave out for him to see.

Best wishes

-Rita-
Regular Member


Date Joined Jun 2006
Total Posts : 60
   Posted 7/8/2010 7:50 AM (GMT -7)   

My son and I both get Lyme rages.  What I have been told is that they are worse when a person's inflammation is worse.  So, if I have eaten badly or missed my supplements, or not detoxed in a few days then I am more likely to have an episode.  Our primary treatment for Lyme is a R.I.F.E. machine and if my son goes more than one week without a treatment, I can see that his worsen, too.

So - the question becomes how to reduce inflammation?  Detoxing, eating a "clean" diet, taking something to absorb toxins (we use Shilajit), and drinking good clean water. 

If we stick to these guidelines we both feel much better and the rages are greatly reduced.  The problem is that my son is 19 and he wants to do what his friends are doing, so staying up late, eating fast food, smoking cigarettes, etc.  I stay on him about his supplements and he is really good about the detox baths.  He is starting to realize that he feels better is he uses the R.I.F.E. machine regularly so he is getting better about sticking to his treatment schedule.   So I am happy with progress.

Good luck! 

Marika


DX in 1994 - SLE, myositis, firomyalgia, sjorgens, raynaud's, elevated ANA, lymphadenopathy.
Postive IgG and IgM 2009.  Daughter and son also have Lyme. 
 
 


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 3847
   Posted 7/8/2010 7:27 PM (GMT -7)   
Hi jc27,
 
I'm really sorry that you are suffering and not getting the support you need.   It's sad when family members are not supportive, I've been there and it hurts, ex-husband (lack of his support and his attitude caused him to become an EX), not to mention my family who didn't and still probably doesn't believe that lyme disease exists.   Denial or lack of education...
 
Rage? I think there are all different types of rage.  When I was in my late teens I had rage or should I say anger as I did not get along with my family, yeah, I was a rebel but that's another story.
 
Yes, you could have most definitely passed lyme bacteria to your wife who gave it to your son, research has proven over and over again that lyme can be sexually transmitted as well as passed to a baby.  Amazing how many couples I have met who both have lyme.  
 
I'm assuming your son was tested by IgeneX and even they are not 100% correct all the time.  I know many who did have lyme but tested negative through IgeneX.
 
In my case, I suffered lyme rage where I would say words to my friends and family I would regret and eventually I became scared of myself!   What I found out in my case is that when lyme dies off (whether naturally or by using a protocol), one of the dangerous toxins is ammonia which not only exists in tissues and other parts of the body but the brain as well.   Very strong toxin!   I took Dr. J's CNS/PNS Neuro-Antitox Formula which cleared out the ammonia in my brain and body.    I became calmer and the rages stopped.. 
 
Your son has to be open to trying any detoxing supplements, if he's not, well, there's not much you can do to help him..   That's the most difficult part of this disease, many don't want help or they are simply in denial..  
 
I wish you and your family the best and really feel for you..  You need to take care of yourself so you can get better.    Keep us updated okay?   We are here for you.  
 
Denise 
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and Symptom Free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1489
   Posted 7/9/2010 12:49 AM (GMT -7)   
JC...what makes you think your WIFE doesn't have lyme too? or does she?
if your son has it ..why wouldn't she?
hep c , lyme
Dad has lyme


rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 7/9/2010 12:27 PM (GMT -7)   
Hi
I can certainly empathize with you.  I have been "diagnosed" since 1996 my son was treated in I think 3rd grade I do not remember for sure.  He is now 21 and he rages, and i have wondered the very same thing as you!!  I mean he is one easy to fly of the handle person I want to cry as I write this because my daughter told me last week "mom something is wrong with -----.
 
He was recently ill, supposedly mono although I know for sure the first test came out negative for mono, I do not remember if he was positive for epstein barr yes i think he was so one would think he has mono.  Mom here is wondering something else.   By any chance does he have acne?  This would be a way to get an antibiotic and see how he does, I think I should do this too but if he should herx i will not know what to do with him then anyway since we have no ins.  Well anyway, might want to try getting antibiotic for skin (they give that out like its candy, go figure)  It can also be ordered online w/o a script but it is expensive. Good luck I will put you and him in my prayers maybe u could do the same?  lisa
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