Hope you are all feeling better than you were when I left. Sorry I haven't been on in a while.....was feeling better and trying to get on with things. BUT, unfortunately, as the sayings goes "All good things must come to an end", my feeling better has come to an end, and it feels as if everything has come crashing down, AND....A NEW SYMPTOM has formed out of no where. Oh and just to give you all a little reminder of my background, I have Lyme, Neuro Lyme, Babesia, Bartonella, and Erlichia.
Bottom line is, I think that I have developed ADD and a some learning disabilities. In fact, from what I've read and what I know, I am 95% sure that I have these issues. Question is, Why have I developed these things and are they Lyme related? It is a fricken imposition that these issues have developed, and I WANT TO KNOW WHY! It has really been limiting my total overall function. My mind is constantly going off in a million different directions and I feel as if I have all these things I have to get done in order to feel complete at the end of the day but there is just absolutely no way to get it all done.
Somebody, Anybody, Please Help. As always, it is appreciated, more than you can possibly imagine. I want to live again, normally and pain free.
-K-lyme
[ 24. October 2007, 05:53 PM: Message edited by: k-lyme ]
Posts: 227 | From CA | Registered: Apr 2004
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posted
My NP believes that most, if not all Lymies have some amount of ADD-type symptoms -- I know I do, and so do all the other Lymies I know personally.
Mine come and go with the severity of symptoms. I find Provigil helps quite a bit with the concentration problems and distractability.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
ADD is a neurological disorder very separate from Lyme; you are BORN with ADD; and can not "develop it". One of the criteria for diagnosing it is that you have to have had the symptoms before age 7.
However, many symptoms of neuro lyme are IDENTICAL to ADD; in fact every single listed symptom of ADD will also be found in neuro lyme.
So although they are two different things with two different etiologies; the symptoms and manifestations are the same.
Perhaps the ADD meds will be helpful; you could ask your doctor to try you on Adderall or Concerta; and see if it helps.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I did some reading on Fred Baughman; this guy is a complete quack. He is making statements and assertations that are COMPLETELY UNTRUE, and presenting them as facts...sound familiar?
I dont' think it's necessary to go into all the reasons why he is wrong; just think of his perspective as being similar to that of our recent friend at UConn....only different diseases.
There is absolutely no merit whatsoever in what this guy is saying. He doesn't know what he is talking about.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
You seem to be hung up on the notion that one disease is caused by one bacteria or one genetic defect or one whatever such that they must have entirely distinct root causes. Maybe reading this will help convince you that MANY chronic diseases may simply be the result of successive infection.
Apparently the FDA has seen enough data to be convinced Marshall's theories have merit as they have granted several approvals in his favor.
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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tailz
Unregistered
posted
It may be one of these bugs, but bacteria have a 'magnetic sense', so it's a little more complicated. My brain is fried, too, but no doctor will listen to me.
Check out the links in my signature and get a gaussmeter to prove it to yourself.
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Greatcod
Unregistered
posted
LymeBrain, neuroLyme, is a form of dementia, like syphilis dementia. Serious business.
There are a range of cognative effects...just read how many people here cannot read a long post unless its broken up into smaller units.
The ADD thing is probably more common in Lymies than most people want to admit. After all, who wants to deal with the reality that their mind doesn't work right anymore? It easier to joke about the neuro symptoms than confront them.
I have word finding problems, inability to focus long, and now am dealing with that sometimes I cannot remember how to spell even simple words.
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Sure, ADD "symptoms" are REAL!! ABSOLUTELY!!!
Is "ADD" a real disease? I think not!!
Lyme is a real disease, so is Bart and so is Babs, mycoplasma, parasites, etc., etc., etc. Yes, testing for it is problematic, but the bugs HAVE been isolated. NO actual structual or other pathology has ever been isolated for "ADD." It was voted into existence.
Just because someone collects up some real symptoms and then says it's a disease doesn't make it so. The person may have an ACTUAL disease that will be missed or mis-treated because he is now "labeled."
Have a look at http://www.alternativementalhealth.com for many ways that biological diseases are found to underly psychiatric "disorders." There are also many methods of treating these diseases at that site.
I know of people who have been labeled schizophrenic and put in a mental institution who actually had Lyme! Did being put on heavy anti-psychotics that can cause structural brain damage help them?
We KNOW that Lyme (and co-infections) cause mental problems. Then, the problem becomes getting the best treatment that will resolve your own personal situation.
Current studies I have show that people in the public mental health system live 25 YEARS LESS than the general public. I'm not interested in going there or sending any of my friends in that direction.
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
How I wish you could be locked in a room with my son for an hour pre-medication. If you hadn't jumped out the window by then, and he came back for an hour post-medication, you would see a HUGE difference.
You would have no doubt ADD exists. Many people have both; but many people who are born with ADHD are NOT born with Lyme. They may get it later, or may have one or the other.
Anyone who knows my son can tell in 30 seconds whether he has had his medication or not.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
When my symptoms flare or when I have relapsed, my anxiety levels go way up. I can't concentrate long enough to get complicated things done. I worry about every little thing getting finished, but I can't seem to keep track of it all, so things don't get done and then I get panicky (kinda like OCD) about it until they are done.
My concentration gets so bad that I can't read a novel because I can't keep track of what I am reading at the time, and I can't remember what I read the day before if I pick up the book the next day.
If I have a task that required several steps, and I start to move to the next step, I find I can't remember what I was supposed to do next (happens right away after I think about what to do next - then it is gone!).
Does that sound like "ADD" symptoms?
Yup - it's Lyme for me.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I'm in no way saying that your son doesn't have behaviours that would possibly drive me crazy (although I have been trained to deal with these nd don't have much trouble, usually).
I'm not saying that giving him whatever psych med you have doesn't change his behavior. I'm sure it does!!!
I'm not even saying that there isn't a physical cause that possibly runs in your family.
Does this mean he has a disease that is ADHD? Not if there is no PHYSICAL, OBJECTIVE evidence that there is such a "disease."
Check out Dr. Block's work--No More ADHD--concerning food allergies and other causes for off the wall behavior by children.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I'm not new to Lyme, but I'm new to the board. I, too, developed extreme problems with concentration, multi-tasking, learning, etc. after an active Lyme infection in 2002. I was finally diagnosed with chronic neuro Lyme about 18 months ago. I was referred to a neuropsychologist for neuropsychiatric testing (this is very different from standard psychological testing).
Like Minitails2, I was diagnosed with acquired ADD secondary to Lyme. I was also diagnosed with an amestic disorder secondary to Lyme. I have been taking Adderall for about a year. Took some experimentation to get the dose right, but it has helped significantly with the symptoms you describe. If I don't take it, I am so disorganized mentally that I can't stand myself.
It seems that so many symptoms related to Lyme must be treated symptomatically and we can only hope they improve once the Lyme is treated successfully. In the meantime, you might benefit tremendously to see a psychiatrist who can discuss treatment options with you.
Best of luk to you in dealing with this.
Faye
Posts: 4 | From Baltimore, Maryland | Registered: Oct 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Faye, Well said, excellent post! I love that; acquired ADD secondary to Lyme....great. That makes it sound so clear.
So there are two ways to get ADD. Some of us are natural born ADDers; some are Lyme acquired ADDers...
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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