A few years ago my wife began displaying symptoms which, following a serious investigation into the growing range of ailments, was a 99.999% diagnosis for Lyme disease. Trust me, we went through the mill in trying to figure it all out, her symptoms were ticking ALL the boxes AND we had been through a tick infestation at home, but the blood test came back negative. She appeared to even get a Herx reaction to a course of Amoxicillin.
To cut this arduous story short and, as I'm sure many of you would acknowledge, anything related to Lyme or the symptoms of Lyme, it is a tortuous situation for the sufferer and their family, it turned out that, unbeknownst to my wife, following a horrendous bout of rage and psychological torment, along with many physical ailments, she began to recall memories of horrific sexual abuse from her childhood.
Whilst she had displayed an unbelievably accurate portrayal of Lyme symptoms, both physical and mental, she had, in fact, been suffering from Complex Post Traumatic Stress Disorder (C-PTSD), which includes stress related symptoms of Borderline Personality Disorder (often marked by rage), Schizophrenia and Dissociation as well as many stress induced physical ailments.
Now I'm not declaring that all Lyme patients have C-PTSD! But many people who have experienced a Lyme-like descent into psychological and physical breakdown, may need to start reading up on C-PTSD, BPD and Dissociation.
Who knows what a new approach to one's problems may reveal?
Best regards to all and, after having researched as much as I have about Lyme, my heartfelt sympathy goes to all who suffer from this range of symptoms, it is insidious indeed.
Posts: 2 | From Europa | Registered: Mar 2009
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Not a good idea to come on here and practically tell us "it's all in our heads". Obviously you haven't been here long or you would realize that the large majority of us are very normal.
Most all of us are mentally very strong so this annoucement does not go over well here.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Some of us have "Complex Post Traumatic Stress Disorder" from so many people and doctors telling us it is in our heads.
I am not suffering from C-PTS, I am sure doctors would love to use that label. Many of use have had positive Lyme tests.
Posts: 92 | From Virginia | Registered: Jan 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Did your wife ever see a Lyme Literate Medical Doctor?
Did she ever have a Western Blot for Lyme done via Igenex?
A herx reaction to amoxicillan kind of makes me wonder
If she has CPTSD and Lyme.
I don't think you herx with CPTSD.
I hope and pray your wife gets the help she needs.
Good luck.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I hope and pray your wife gets the help she needs.
Me too.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Me also! I hope she gets the help she needs!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
What a horrible thing to happen to anyone!
I do hope she gets the help she needs and can put this behind her (as much as that can be done).
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Please be aware that there is mounting evidence that spirochetes are being found in people with all the disorders you mentioned above.
I am not discounting the awful abuse your wife may have suffered, or that she suffers from PTSD.
PLEASE, don't get sidetracked from the facts of the tick infestation and physical symptoms she has been having. The neuro manifestations of Lyme can be very complicated. Wishing you the best,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hmmm...yes I also was wondering if she was ever tested with Igenex western blot?
Many of us here were told we had anxiety or it was all in our heads. Then we got tested or responded favorably to antibiotics.
I would not be so quick to trust a doctor's judgment, especially if your wife has not been tested.
I am sure fatigue, depression, anxiety, rage are aspects of the disease you mentioned.
However, does your wife have physical manifestations like re-occuring rashes, fevers, night sweats, twitching, ect?
If she hasn't seen an LLMD, I would first try them personally. Psych meds will drug a person up and not make them well necessarily. I agree with Gael, there is more to these 'Psych' diseases that meet the eye.
My Lyme Elisa is still negative to this day (if you are interested I have many articles which acknowledge that the Elisa is a poor indicator for Lyme Disease, due to the strain they used and the fact that antigens are what is being measured instead of antibodies).
Good luck to you and your wife. Again, if she has not seen a LLMD and been tested, she deserves that.
posted
Hogwash...that is my word of the day! I supposedly have PTSD but it has nothing to do with Lyme...PTSD does not make you herx "whilst" on antibiotics, but nice try! Sorry for my sarcasm but get real. This is like the pcp that wanted to put me on a antidepressant to help with my NP. Give me a break...
-------------------- If you keep doing nothing...nothing changes!
posted
I must say I am somewhat shocked at some of the vitriolic replies to my post. Even to the point of receiving pm's stating that maybe it was all in my head!??
Listen, I never said that C-PTSD was the answer to all your ailments, I simply said that, in *some* cases, it may well be.
I am deeply offended at those who appear to feel that I have simply wandered onto this forum and dismissed your condition as purely psychological, that is nothing like the tone of my post and I would appreciate if those who were unable to understand what was actually written, were to re-read the original post again before being so quick to attack me.
I'm not some Lyme noob who's arrogantly making wild claims. My wife and my family have truly suffered over the past few years from her suffering with this debilitating condition. But the fact remains that *only* when we finally, after a truly horrendous journey of discovery, realised what she had actually been suffering from, did we manage to make serious inroads into getting her well again.
Oh and for those who truly failed to grasp the gravity of my original message, no, it was not in our heads. We subsequently had corroboration from a third party, as well as numerous other aspects that confirmed the awful truth of my wife's childhood.
She is getting better, *we* are now healing as a family. But as my understanding of the extreme nature of the psychological and physiological state that develops when children are raised in a seriously dysfunctional environment (violence, abuse, sexual assault) grows, I have subsequently recognised similar traits in a number of people I have known over the years.
The awful truth is that the dissociative aspect of the psychological response during the trauma (the mind, the ego, the sense of self, becomes somewhat removed from the events as they happen), result in these events being forgotten. Only when my wife had moved thousands of miles away from her abusers and had established a safe life with me did her mind begin to start re-connecting to the "abused self". This sparked a long period of sleep disturbance that contributed to the physical and psychological breakdown. All the while we had no idea what was happening.
When the rages came, the one thing that kept us together was the fact that we knew these "episodes" did not belong in our relationship. They were not representative of the people we were, are, the loving couple truly devoted to each other.
I'd end up having to wrestle large kitchen knives out of my wife's hands as she raged, trying to harm herself because she blamed herself for the trauma that her condition was inflicting on our family.
As the physical ailments brought her down, the rage often got out of control as the psychological torment that was going on in her mind simply served to make her attach inappropriate emotions to present day situations when they, in fact, belonged to memories that had yet to fully surface.
One key issue was that, even when she was flying off the handle to something I would consider minor, we then found that she still needed to hear that, even if her response to the issue was being "ramped up" by her condition, her point of view needed to be validated. It was all too easy for me to simply dismiss what she was saying during these episodes, this only made the situation worse. It would make her feel like she was losing her mind, even though her emotional level was wrong, her point of view to the issue that triggered it, was often valid and she at least needed to know that it was still valid, that she wasn't simply insane.
I know that a number of you, not necessarily those who have posted a reply in this thread, will recognise some of issues I have raised regarding the "Lyme Rage". How minor disagreeements can suddenly begin "ramping up" beyond anything that would be appropriate to the issue at hand. This is typical of the emotional memory of a C-PTSD (this aspect is primarily the Borderline Personality symptom of the condition) sufferer coming to the surface before the real events that caused it are able to be recalled.
This results in a backlash against something that is "in the now" when it actually needs to be re-connected to the proper event from the past. That is why the rages are so often inappropriate. They don't belong to where you are now, they belong to where you were then.
For those of you who may simply want to dismiss this thread as "not belonging in a Lyme forum", I would argue that you are wrong.
We did the whole Lyme thing. We've been there just as much as you have. Knowing what is written about the lack of reliability regarding testing for Lyme, I'm not going to be so arrogant as to say that my wife absolutely did not have Lyme.
I will, however, state that *only* when we finally got to the truth of her C-PTSD and started treating that instead of the Lyme, did she start to get truly well again. It didn't happen overnight and there have been many upsets along the way, as would be expected, but we did finally figure it out and that is why this thread belongs on this forum.
Because, now really listen here, for *some* of you, it might not be Lyme.
Posts: 2 | From Europa | Registered: Mar 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
MrGoatBoy,
Ahhhh...thank you for clarifying! I think when most of us read your original post, it was confusing. There wasn't mention that your wife was in fact healing now (which made me worry that she was being misdiagnosed).
It is still weird that she would herx though. Again, has she been to a Lyme Specialist? Not an ID or PCP or Neuro, but someone who KNOWS about Lyme?
That is the thing that confused me especially.
I was not abused as a child, and after I got the 'flu' in the summer when I was, my health just went downhill. The next year I would have rage attacks for no reason. I didn't try to hurt myself or anyone. I just felt really angry and would storm out of the house and take a walk. Partly frustration from being nearly bedbound and being unable to do anything I used to like remember anything or exercise.
Sorry, I just re-read your original post and now I see the part with the sexual experinces she endured as a child. My brain has not been functioning lately. Just think morning I told my husband that our kitty sounds funny when she laughs (I meant Meow) and instead of trying to say July, I said February.
It's frustrating!
I'm sorry that you received cruel pm's. I'm sorry if you were offended at my post, I wasn't trying to be offensive, but was worried that perhaps your wife did have Lyme.
I think some of the people on here were upset b/c they were told it was all in their heads for a long time. Fortunately I was given physical diagnosis' like Chronic Fatigue Syndrome, but I would be plenty upset if I was having so many physical issues and a physician told me I was making it up.
I am terribly sorry that your wife had such a traumatic childhood. I truly am. I wish people who will not protect their children could not have children. It's so sad and I think I am going to call my parents today and tell them what a blessing it is to have not been abused and hated in my life and to know that they love me more than life itself. They tell me what a wonderful parent I am, but it is because I have learned from the best =)
Gosh when I was so sick in high school and had trouble breathing, my mom slept with me at night because I felt like I wouldn't wake up the next morning. She massaged my shoulders when I had such trouble swallowing, I went to 4-5 doctors in a year trying to find out what was wrong. I cannot imagine what it would be like to grow up without a loving environment.
So again, I apologize if you are offended by my post to your message. And again, I am so glad that your wife is starting to feel better.
LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I think since we all have been judged and misdiagnosed and not believed by so any doctors, that we have all become a little oversensitive and ready to jump on the first person to say it may be something else...
I do have lyme, I believe, but me and my llmd dismissed pain, numbness, tingling, in my arm and hand for many years before an MRI of my neck showed bulging disks, one of which is pressing against a nerve running down my arm. Now I know why abx didn't fix it, but physical therapy helped.
We can't be so quick to not listen to other diagnosises or opinions. Some of us might NOT have lyme, and some of us probably most of us, have lyme PLUS other medical problems.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i have also been to so many doctors and told i'm a head case that it's no wonder i really am!!!
depression is part of lyme and if you have to take meds for that, then so be it. but it doesn't mean there's something wrong with us.
well, there is, but it's called "lyme disease".
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Just wondering if your wife also got adrenal / endocrine support when on her healing path?
Much of what happens with lyme is that the endocrine and cardiac systems are so damaged - and that affects neurological process as well. Whether that damage comes from infection or from other causes, the effects are devastating. That can be where some cross-over symptoms can be confusing.
Some of the methods used in your wife's treatment may have also have helped heal damage to those physical systems. Glad to hear that she is getting better.
I wonder, though, how long was she on Amoxicillin - or other antibiotics?
You said: "She appeared to even get a Herx reaction to a course of Amoxicillin."
Does your wife, too, think everything is on the right track? Is healing happening in addition to symptoms being managed. That is the impression I get from what you write.
Just please keep in mind that if symptoms are being managed and not healed, that there are any number of parasitic or chronic stealth infections that can be connected to some of the these symptoms, regardless of a person's past.
Hopefully, though, all will be well with her - you - and everyone.
posted
I cannot imagine going thru what your wife has endured. I would be extremely traumatized and the stress would make me sick for sure. She has my sympathy.
On the lyme note, this may be a bit out there for you but I'll run it by you anyway.
Lyme is transmitted person to person like HIV. Thru breast milk, sex, and in utero. It has the ability to pass the protective brain barrier to the degree that the man who shot the preacher up North's mother has explained his history of lyme and believes it caused him to act out. Lyme affects the brain and makes people do very serious, harmful things.
Dr. Brian Fallon (Columbia University Psychiatrist) wrote and article stating his belief that pedophilia can be caused by lyme which leaves me to believe many sexual deviations may be involved.
My question to you is, did her abuser have neuro-psychiatric lyme? Did he/she pass lyme on to her?? Her symptoms are personal to her own DNA and with lyme other diseases may have morphed from the lyme.
Has she suffered symptoms all her life??? Personally, my depression meds have definitely helped me overcome many lyme symptoms related to rage, mood swings and depression. I know they will help her deal with medical AND mental issues.
After reading your initial post I knew immediately there would be a backlash not just because because people may be angry or offended. Quite the opposite, they care and want her to get well totally. Also, they have spent YEARS reading material and learning about the sad ravages of lyme disease and understand the repercussions.
She can indeed have both problems. If you watch excerpts from Under Our Skin (www.openeyeproductions), you will find testimonials that entire families have lyme. I know this to be true because it happened in my family.
Please don't throw the baby out with the bathwater . . . she may have the ability to reach wellness that you never imagined!!
Best of luck to you, I know this is overwhelming but again, watch Under Our Skin excepts, YouTube.com has them too, and then consider if you have finished your search.
Also, Nat'l Inst. of Health, Mayo Clinic and Shands all sent my nephew home to die, they could not diagnose his symptoms. Sad to say, I, as a hairdresser, was able to do so and today his health is tremendously recovered. Even with a positive test result, doctors continued to tell them they were wrong about lyme and just recently, our local Infectious Disease doctor told a lyme test positive patient she "didn't have lyme".
Sadly, the doctors cannot be trusted when it comes to this disease. I'm guessing the doctor who gave the new diagnoses is not a LLMD. I would want a LLMD to back up that change of diagnoses. What have you got to loose??
quote:Because, now really listen here, for *some* of you, it might not be Lyme.
This is true for any disease that does not have some type of conclusive test that can rule out other factors. Some patients currently being treated for Lyme will have MS, SLE or even primary psychiatric conditions that manifest as Lyme symptoms.
That does not change the fact that at this point in time that many people are not diagnosed with LD when they truly are infected. False negative diagnoses outnumber false positives for many reasons, but you are correct - the false positive rate is not zero.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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Not sure what to say other than i'm still unclear of the point of the post. I'm sorry for your suffering but the % of people on this site who were told that it was in there head when it was Lyme versus those who were told it was Lyme only to have true mental disease has to be a 1000 to 1. I suppose its a free country but this is an extreme hot point for me and others on here.
2 months i spent on Lithium while the disease progressed inside me because i was told it was in my head. So again i am sorry for your suffering and glad there is healing but hopefully you can understand the road many of us have been down. To sign on and make this your initial post set me off.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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