I have a symptom I'm sure many might recognize. And I find it the hardest to seek guidance for, because of how I've been treated.
Most docs dismiss my symptoms as mental illness. As if I could imagine pulsing nerve pain, neck pain, joint pain, etc.
But every few weeks, I really take a turn for the worse. I'll be doing great for awhile, then I feel completely knocked off my feet.
My head feels wierd, not exactly a headache but just a feeling. Like the brain fog hits a new level. I have trouble functioning, I feel like mentally I'm not doing well. I feel slightly nutty...my anxiety peaks, I question my sanity (am I actuality mentally ill this whole time, did I make up Lyme? Etc etc). I end up in bed, really struggling with basic functioning.
After a few days it passed and I start feeling better, than it hits again.
Its been about 3 years of treatment now, so I'm at the point where I am completely exasperated, angry, scared that I wont get better.
I'm scared that my brain has been damaged, that I'm now mentally ill.
Just really frightened. My therapist told me that Irrational people don't question whether their rational, and its a good sign that I question my sanity because I know that something's not right,
But I'm scared. I don't want a mushy unpredictable brain. I want a life, with a job and my own place to live. I want a future and possibly to meet someone and get married.
Instead, every few weeks I'm in bed, feeling like my mind has been stolen.
Posts: 133 | From North Shore | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You need to mark each of these episodes on a calendar. Just write "bad day" for each day that you suffer with this.
After a month or 2, see if you see a pattern. If this comes about every 28 days (counting from the first "bad day" to the next first "bad day,") then this is the lyme 28 day cycle. Your lyme is flaring in the typical pattern.
If you are still having lyme flares after 3 years of treatment, then compare your treatment to the Burrascano Guidelines and see where it has fallen short.
Burrascano prescribes high-dose combinations of antibiotics to cure lyme. If you have not been treated this way, then this is why the lyme is continuing to cycle every 4 weeks.
Lyme symptoms are definitely both mental and physical.
"It has been observed that symptoms will flare in cycles every four weeks."
"With treatment, these monthly symptom flares are exaggerated and presumably represent recurrent Herxheimer-like reactions as Bb enters its vulnerable growth phase and then are lysed."
"All patients must keep a carefully detailed daily diary of their symptoms to help us document the presence of the classic four week cycle, judge the effects of treatment, and determine treatment endpoint."
All quotes from p. 17 of Burrascano.
If you can see a pattern to these episodes, then count forward on your calendar and predict when the next "bad day" is going to occur. If it occurs somewhere near the predicted day, you will KNOW that this is NOT mental illness. There is no mental illness that behaves with such a pattern.
(There is no 4-week pattern to bi-polar disorder, depression, schizophrenia, paranoia, etc.)
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Yes, I had excellent treatment. Many months of combination IV therapy and oral antiobiotic therapy with treatment for coinfections and parasites.
To be honest, I was doing really well the past 6 months...I do have a calendar diary and I do track symptoms...I've had mostly GI problems the past 8 months.
I may be having a relapse. I have not seen my LLMD since September, we had serious mold issues in my house and I just finished remediation and wanted to rule that out for causing my symptoms.
Today, I noticed that my left knee was hurting and it caused me to limp a few times, and now neck pain is coming on and hip pain,
I'm very nervous and scared now. I've already been to the ER in the past for excruciating neck pain.
I can't keep doing this.
Posts: 133 | From North Shore | Registered: Sep 2015
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I thought I was getting better. All that money and effort appears to be wasted, tens of thousands of dollars.
Didn't do me any good. Here I am, with my pain and cognition problems coming back on.
Have a friend that stopped talking to me cause I refuse to get help (i.e. Mental help). Doctors that tell me there is nothing they can do, have I tried therapy?
An LLMD I can't afford anymore, I've run out of money. Trump and the republicans are going to take away my health care. That causes my anxiety levels to go through the roof.
I can't keep this up. When does it get better? No one can tell me if the Lyme is gone, maybe this is something else.
I'm just frustrated and scared and angry. I don't want to live in my bed anymore.
Posts: 133 | From North Shore | Registered: Sep 2015
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posted
This sounds like the Fry bug or babesia like organism, the back of the neck pain, cognition problems, etc. look through search myself and others have posted Dr C protocol as a good reference. Luck under the search button. Good luck.
Posts: 696 | From CA | Registered: Dec 2011
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posted
All you can do is try stuff, to see if it's going to work for you.
A simple remedy without any bad side effects is turmeric, an anti-inflammatory. It greatly reduces my joint and muscle pain. I get it in bulk at the healthfood store and dip 00-size empty capsules into it and take a couple a day. I can feel it working fairly quickly.
Also, have you ever had your blood levels checked for thyroid hormones? If T3 is low, that's called hypothyroid, and it can affect your metabolism and your brainfog.
It wasn't a cyclical problem for me - it was constant, but who knows if it's in the mix as a health issue, so it can be checked - TSH, T3, your doctor should know what to test for, even internists can order these tests.
I was found to be low, went on Armour thyroid, and my brainfog cleared up. Some do well on Naturethroid.
Posts: 13116 | From San Francisco | Registered: May 2006
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