posted
So, I'm doing much better after 1 1/2 years of treatment.
Made the trip to the doctor today and it went okay. I was able to talk about things without stressing out too much. Did get very cold feet/hands when they couldn't find my vein for blood test.
After everything, an assistant needed to take my blood pressure. I could feel it going up while the machine was doing it's thing.
She took it again about 10 min. later and it had gone down.
The thing is - my symptoms that had me seek medical help when this all started - were sweating, pain and high blood pressure(severe spikes - went to the ER). I had never/ever had high blood pressure before.
I know this is a psychological component, but not sure how to work on it. My blood pressure at home is okay, except it does go up a bit when I'm herxing.
Anyone else with this issue. By the way, a cardiologist told me I did not have high blood pressure.
(At least I went to the doctor without crying or getting dry mouth.)
Posts: 93 | From arizona | Registered: Oct 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I think I suffer from PTSD somewhat and so does my daughter.
I don't I have Lyme, but I have been my daughter's caretaker for well over a decade with her struggles with it.
I can wake up in the morning having a feeling of dread...like I am afraid to face my day...I cannot understand it...I do not have nightmares...it comes involuntarily, without thoughts involved.
I have the same problem with my blood-pressure as you...very high in a doctor's office, but normal at an in-store BP machine.
Sometimes...out of the blue...I get fearful with no triggers and my heart will palpilate.
I don't mind getting scared with triggers because at least I can reason myself out of those situations...but with no triggers, it is scary and I feel disoriented.
I feel that it is all caused by living on the edge for ten years and I mean that literally. Life WAS a living nightmare for my daughter and I for a long time with few breaks from the stress, frustrations and palm sweating fear.
But, even though it was the most difficult time in my life thus far...I also know that I did make it through...perhaps not unscathed, but wiser and keeping the Lord close has helped me much.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I believe that I have PTSD. My response to simple medical tests are overboard- I work myself up envisioning the most horrible outcome.
I have a huge startle response. Self destruct with any amt. of stress, just cannot handle it. My life has been so horrific with this illness, that it is difficult to deal with the 'fallout' of any sort.
i have the same BP issues as you've expressed. Get cold hands and feet, feel lightheaded, etc.
Posts: 3975 | From usa | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I, too, have a terrible startle response which is really seizure activity (in my case). My inner ear system is the trigger. And that is not uncommon for lyme.
I think the term PTSD is as much an umbrella term as fibromyalgia or CFS.
From the aspect of chronic infection, I think it's often a combination of:
adrenal shock & sheer adrenal exhaustion of a dangerous level
CNS over stimulation that can land on the seizure spectrum when the NMDA nerve receptors are too stimulated. This goes hand-in-hand with lyme due to toxicity and damage to the HPA-axis.
Toxicity from infection and from the liver / kidneys being overwhelmed and damaged.
This neuro-excito-toxic reaction is frequently discussed in lyme articles.
Vestibular over stimulation that results in adrenal shock with dangerous levels of cortisol (that can literally be caustic to the lining of the blood vessels throughout the body).
Etc. Etc. Etc.
Then, there is the emotional and psychological impact, of course. But I think a lot of the physiological impact is discounted as it's labeled a psychiatric disorder. It's not just that at all.
I can't begin to explain why all these threads address PTSD but they do.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- - These two authors explain a great many things but they are neither about JUST diagnosis but a better understanding of how lyme (& cos) affect every cell of a body.
These articles / sites are nearly required reading to come to even a basic understanding of how lyme changes everything. Once I read these, so much of what I'd be going through for years made sense. And that is a gift to my spirit.
When To Suspect Lyme Disease - by John D. Bleiweiss, M.D.
. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. . . . .
--------- full article at link above.
[and that is not at all about a character flaw but the toxic load and nerve damage, etc.]
Because many of the symptoms of Lyme disease involve the nervous system, it was speculated that the spirochete produced a toxin that disrupted normal nerve function.
Through the use of DNA manipulations and a database of known protein toxin DNA sequences, a match was made with a selected Borrelia burgdorferi (Bb) gene and a specific toxin in the database.
. . . found to have characteristics similar to that of botulinum, the toxin of Clostridium botulinum, a zinc endoproteinase.1
The toxin from Bb belongs to a family of toxic proteins known as "zinc endoproteinases" or metalloproteases, and includes the toxin from the organism causing tetanus as well as those from many other well-known infectious diseases. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Other ways PTSD affects lyme patients:
* The sheer load of medical abuse suffered by so many of us over years, even decades.
* "Burn out" from the immense complexity - and from the sadness and experience or witnessing of pain for those affected.
* Loss of job, careers, friends, family, our sense of self and ability to be competent, etc.
* Loss of enjoyment of life's activities. Satisfaction and enjoyment (on various levels) is vital to overall health.
Again, etc., etc., etc.
------------
There are ILADS-educate LL counselors, therapists, psychologists and psychiatrists.
Ask for referrals from LLMDs, LL NDs, support groups, etc.
Naturopathic doctors, Acupuncturists and those with similar professional training can also help. Again, best if ILADS-educated and LL.
Massage Therapists, Body Work, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Backing up,
when having BP read, it can be all over the map.
Just getting to a doctor's appointment can cause a rise from the sensory overload, etc.
Our thoughts can affect it, too. We all want to "do good on tests" so we can become a bit overwhelmed when "tested" with that BP cuff.
Breathing exercises, Qi Gong or Tai Chi classes can be of help.
Never count on just one reading. It may be best to get a BP unit and test at home - just be sure to have a good machine and instruction - and test in BOTH arms.
There are many variables, though. Many.
Rule of thumb:
Tender Loving Care does a body good. Take care. -
[ 05-08-2012, 08:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks all for your replies. I had forgotten that this had been addressed in an earlier thread.
I'm hoping to someday be able to go to a doctor without my BP going up. I could feel it rising after the assistant put the device on my wrist.
I have never enjoyed the doctor, but never had this problem before.
I'm looking into ways to work through it. I shouldn't necessarily say I have PTSD, but the reaction is like that. My startle reflex has gotten a lot better through treatment which has addressed my adrenals.
If I come up with anything great, I'll report back. I am a licensed mental health counselor, so it interests me greatly.
Posts: 93 | From arizona | Registered: Oct 2010
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Keebler, as always, thank you for putting scientific reasoning behind all of this. I'm sure that what I've called PTSD is both a result of an infection based response (all that you've cited), genetic predisposition and a genuine fear that the other shoe is going to immanently drop.
Nothing is ever clear cut. These infections bring about collateral damage to every bodily system.
Bellajo, I too was in the Mental health field and I saw a lot of similar afflictions in our veterans.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Great subject, thanks for bringing it up, and for all the info here.
Comforting to know that all these things can come from having Lyme. I tell you, it takes away alot of the guilty feelings that come from some of the overeactions to things that are caused by Lyme.
"Lyme patients can become easily irritated by anyone just walking into the same room..." So true! Seem like I am just so overreactive to most things because of this disease. Even just someone sneezing loudly, makes me downright angry. And I usually feel really ashamed for it.
I would also say that PTSD has developed over many things surrounding this disease. The abandonment of doctors, fear of rejection, and of a failure to recieve proper treatment. Fear of going into wooded areas. Fear of walking in the grass, even just peoples' lawns. Fear of becoming infected again, by anything. Paranoia over getting mosquito bites. Feelings of dread, etc. etc.
I think that having Lyme and Co. definately can produce PTSD.
-------------------- Please take nothing I say as medical advice, I am not a doctor Posts: 18 | From East Coast | Registered: Nov 2010
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