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Old 01-21-2011, 02:43 PM   #1
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Question Late Stage Lyme - After Antibiotics Q's

So this past summer after a routine physical at my parent's in Massachusetts, my doctor told me I tested positive for an anti-body produced when Lyme is present. She decided to check because of several symptoms i was complaining about including dizziness, tiredness, joint pains, lack of concentration etc.

After telling her of a strange rash (which my doctor in Wyoming decided was not Lyme almost a year prior) she immediately scheduled an appointment for a spinal tap. After completing the spinal tap the results were inconclusive so I was put on oral antibiotics and was scheduled for an MRI this past December (about 1.5 years after the rash). These results also appear to have no significance. I then saw a neurologist who interviewed me about possible symptoms all of which I didn't feel as though I had; (reduced libido, increased joint pain, disassociation, aggression, depression etc.)

Being about 1.5 years after the rash appeared and after taking the full course of antibiotics, I still often feel tired in the mornings, and especially in the afternoon. I ofter have joint pain, have trouble multitasking, sleeping, and concentrating on anything for long periods of time. I've considered seeing a doctor about ADHD meds to help as I am a student of Civil Engineering, or even sleep medication to help me through the night (I ofter only sleep in 2-3 hour intervals).

None of my doctors seem too worried, neither do I. I never knew that I had Lyme despite the rash and sickness, tiredness and what have you until I was told I had it. Now that its been another 6 months, I still can't notice any real changes. I didn't really think that this was very serious, just a tick bite right?

Now that I've read up on the subject I'm realizing just how serious this illness can become. I often drank while taking my antibiotics, college parties and such, and don't know how effective they were, especially taking them over a year after I was bit.

My doctors told me not to worry, and only to notify them if I notice any irregularities. Seeming how the 6-months of being sick and the crazy rash didn't alarm me, I'm questioning whether I'll really be able to tell if something is wrong.

Finally my questions:

It is my belief that I should seek a psychiatric evaluation to determine any cognitive effects Lyme has had, or at least to establish a starting point for any future symptoms that may arise. I may not be able to do this for another 6 months or so. Should I rush this and pay out of pocket?

What are some major Red Flag Symptoms that I should be aware of ?

Is this definitely going to effect my life? What is the likely-hood that I will live out my days with no new or progressive symptoms ?

Am I going to go crazy eventually (well before I'm an senile old man)?

Do I need to tell the few girls I've had unprotected sex with in the last year or so that they may have Lyme ??

Thanks,

-Brian

 
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Old 01-21-2011, 03:02 PM   #2
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Re: Late Stage Lyme - After Antibiotics Q's

Also, the antibiotics I was on was doxycycline for 30 days. Again, over 1 year after the infection.

Thanks again,

-Brian

 
Old 01-21-2011, 03:44 PM   #3
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Re: Late Stage Lyme - After Antibiotics Q's

Hi Brian, it just saddens me that so many get the run around with this horrid disease.

Just my thoughts here...

One month of "doxy" is not enough. That will only work if say you caught it within the first day or so.

You might also want to know, if you don't, that this bacteria is a cousin to syphilis. In my opinion yes it can be transmitted sexually. So you might want to inform your g.f's of this just so they can be aware. But you might want to read up on it first so you can explain that it has not been proven. But common sense is wise.
It is also being said that ticks are not the only critter to transfer it, mosquitos, fleas, black flies, knats, lice, anything that bites and transmitt blood can go from host to host spreading Lyme.
You should also be tested for Babesia, Bartonella, Erichliosis, Epstein Barr, Cytomeglovirus, Mycoplasma pnumoniae, Chlamydia Pnumoniae. One bite can transfer a whole slew of things.

Instead of seeking out a psychiatrist, you may want to find a Lyme Literate Medical Doctor. One that specialises in Lyme. Or a naturopath that does. Depending if you want western med doc or alternative.
Both will be expensive, but worth it in the long run, so you can get on the road to better health. I had been to many counselors, shrinks also. Beings I was told I was depressed, and seriously after being slammed by the medical field many meany times, I just couldn't figure out what was going on with me. And they just confirmed that I was depressed. HA!

You need med's that will help you get well. not something to try and cover the symptoms.

Lyme is not a fun thing to mess around with. You need to read all that you can, and become knowledgable so you can be your own advocate.

There are alterantive treatments also. That others on the board will explain.

Jodie

 
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Old 01-22-2011, 01:52 AM   #4
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Re: Late Stage Lyme - After Antibiotics Q's

Weighing in Brian to say that I agree 100% with Jodie's post.

None of these doctors you've mentioned are specialists in Lyme Disease; therefore, they cannot properly advise or treat you. If you cannot find or afford an LLMD (lyme literate medical doctor) or Naturopath, you can begin researching alternative treatments, which I happen to think are very effective.

You are not going to go crazy, although it might seem that way if you continue to get improper advice about Lyme from all these, probably well-meaning but grossly misinformed, doctors. The longer you continue down this path the longer it will take to turn things around.

On another note, and I know this may be difficult to hear because you're a young college man, but alcohol, with or without abx, feeds the lyme critters and will play havoc with your system. Even a miniscule amount can create a lyme flare, i.e. make you feel very sick.

Let us know how you are doing.

Jen

 
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Old 01-31-2011, 05:59 AM   #5
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Re: Late Stage Lyme - After Antibiotics Q's

Well I haven't had any new symptoms.. still the same; Trouble focusing/multi-tasking/sleeping etc.

Taking notes in class while listening to my professor talk is nearly impossible. I have to do one or the other entirely. I've found taking the notes and reading the book to be better than listening to the lecture and taking notes from the book. But this isn't new.

There is one thing though, that I'm not sure how to read...
Lately, for about a month now, I've been having the most vivid detailed intricate lucid dreams I've ever had in my life.

They are so lifelike that I feel like I've actually lived through them, and often feel as though I had control in deciding what went on in the dreams. I wake up and the incredible emotion and energy from my dreams becomes my reality. If i'm really tired/scared/happy/sad/angry in my dream I'll wake up and be overwhelmed by it for sometimes up to an hour.

I often wake up and feel unrested, not because I haven't slept for a long time, but because I've had such intense dreams my mind still feels as though it hasn't rested.

If I'm really scared in these horror-move type dreams, I'll wake up in a fit of panic and be wide awake in the middle of the night sometimes for a couple hours before I crash out again only to find myself back in the same type of dream.

I've had very sad dreams of loved ones dying and extreme heartbreak. I've had extreme joy in dreams also. Both of these have caused me to wake up, think about what happened in the dream and how it applied to my life, and start balling. Again only to fall back asleep and get back into it.

Last night I had my first one where I was angry. I woke up in a fit of rage and punched my wall several times for events that took place in a dream. I only slept for 3 hours and now cannot fall back asleep.

For the last few years I often smoked some 'herbs' before I went to sleep as it helped me sleep. I also had a drink or two late nights if the day called for it. I did still wake up every 3 hours or so, but only for long enough to glance at the clock, get a drink of water and fall back asleep. Thing is, I almost NEVER could remember my dreams.

I've now cut back on smoking to occasionally on the weekends, and cut out my alcohol almost entirely for about 6-weeks. This is around when the dreams started becoming lifelike.

I assumed it was laying off the herbs at night that triggered the dreams. My brain maybe making up for lost time or something.

Although the dreams are sometimes very happy and pleasurable, they are sometimes very horrible and disturbing, and leave me exhausted.


I'm not sure if this is a Lyme symptom, seems unclear on most forums as many people are taking a variety of medications. I am taking none.

Insanely-Detailed/Vivid/Lucid DREAMS every night for (40 days?) any connections with Lyme ??


Sorry i'm so long winded. Just trying to think it out and be clear.

Thanks

-Brian

Last edited by B Steeze E; 01-31-2011 at 06:16 AM.

 
Old 01-31-2011, 06:31 AM   #6
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Re: Late Stage Lyme - After Antibiotics Q's

Brian,

Get thee to a qualified Lyme practitioner - LLMD or Naturopath - post haste! The longer you wait the longer it will be to try to turn things around. You could end up in a chronic state. Not trying to scare you, just light a fire underneath you. Lyme is serious.

Jen

 
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Old 02-01-2011, 06:26 AM   #7
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Re: Late Stage Lyme - After Antibiotics Q's

Hi Brian,

Just my opinion but it sounds as though what ever is going on with you is affecting your brain. Read up on the Amygdale, which is part of the brain. Lyme and viruses and heavy metal poisioning can and does affect the brain.

I am with Jen, you truly need to seek out some help. And I don't mean to scare you but "if" you know you have lyme. And not doing anything to get it under control, well it can be devastating.
I know a few people that went to mental hospitals because of it. I at one point had it put into my patient file not to send me to a mental ward. Because it was the disease I had affecting me.

To have dreams like you are having could be a reaction from the lyme and the "herb" and alcohol. It seems we come up with some real alergies that we didn't have before. I still do not dream all the time like I use to and I can have some pretty scary dreams still.

If you can't afford a LLMD then possibly you should talk to your parents for some help.

Jodie

 
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Old 02-02-2011, 06:59 PM   #8
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Re: Late Stage Lyme - After Antibiotics Q's

Thanks for the replies. I've been looking into finding a LLMD in my area. There doesn't seem to be any here in Wyoming. I've been looking around in Colorado without much luck either. Seems there was one doctor but he closed shop and retired recently.

I definitely have no way to pay for this right now, and my parents aren't really in a position to either. Massachusetts has State Health Care and because I am low income I have free visits with no co-pay and 1$ generic prescriptions there. As long as I jump through the hoops I should be able to see a specialist at no cost, but there is no telling on the time frame.

I am planning on heading back there for some follow up appointments with the neurologist in mid July, and will see my family doctor about referring me to an LLMD then. Perhaps I can have her do that over the phone so I can make both in one trip.

Until then I'll stay active and keep a healthy diet. Between that and plenty of math at school I'm hoping I'll stay sharp. I've started a Lyme journal so that I can keep track of anything that seems off. Nothing worse than when your doctor says "how have you been feeling the last 6 months?" and all you have for him is, "uhh, fine I guess, I don't really know... everything seems the same."

Thanks again for all the info. I'll keep reading. The forum has been a great resource and you all have been great.

-Brian

 
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Old 02-03-2011, 07:43 AM   #9
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Re: Late Stage Lyme - After Antibiotics Q's

many of the things your talking about i have , after being sick since 4/2008 with many of the things you talk about, an more dec /2010 a new neuro test me for rocky mountian spotted fever an the test was postive, please find a doctor that will rest you

 
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