I am a newly diagnosed Lyme arthritis [fibromyalgia] pt. I have a couple of questions.
1.) I have not been able to find anywhere that the symptoms I have had since starting Minocin orally are indeed indicative of Herxing:
tremors, involuntary twitching/popping of muscles and tissues, severe brain fog [I feel mentally retarded], inability to concentrate or problem solve, unbalanced with walking, slurring
2.) I am on Minocin 200mg at night and 100mg. in am. Is this a normal dose? I noticed the ILad guidelines state 1500mg-2000mg, but my physcian states the 300mg./day is sufficient. I will be adding Flagyl in one month
Any help is much appreciated. Thanks in advance.
Posted by robi (Member # 5547) on :
I have never heard of anyone taking 1500 to 2000 mg of minocin. Could it be a misprint? I took 100mg twice a day when I was on it.
Hope this helps,
Posted by Sammi (Member # 110) on :
Hi TickTock4422. I believe Minocin is similar to Minocycline. I do not think ILADS recommends 1000-2000 mg of this, as it is pretty strong. The dose you are on is in the range for Lyme.
How long have you been taking it? Minocycline can cause dizziness. I had it for about two weeks until my body adjusted to it.
Are you aware of the aware of the Jarisch-Herxheimer Reaction (herx)? Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.
The symptoms you describe can be from Lyme, so you may be herxing.
It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.
I hope you feel better soon.
Posted by Sammi (Member # 110) on :
Hi Robi. I tried to pm you and your box is full.
Posted by Lymetoo (Member # 743) on :
***tremors, involuntary twitching/popping of muscles and tissues, severe brain fog [I feel mentally retarded], inability to concentrate or problem solve, unbalanced with walking, slurring***
Those are Lyme symptoms. ANY Lyme symptoms can show up during a herx.
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
Posted by bettyg (Member # 6147) on :
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treepatrol's newbie link archive with over 1000_+ sites of GOOD info.
read Dr. Burrascano's 2005 LYME TREATMENT GUIDELINES; your meds should be in there.
Posted by riverpatrol (Member # 12182) on :
I too have lyme arthritis/arthralgia. I was diagnosed 2 months after infection, so I was very symptomatic by that time. I started abx on June 19, and I have had the exact same symptoms since then.
I only had the severe brain fog the first day of abx, but I still cannot concentrate or problem solve easily now.
I only slur if I use big words.
The twitching and popping comes and goes: involuntary twitching of limbs usually when I am laying down to nap right before I drift off to sleep. Knees, ankles and shoulders will pop loudly sometimes depending on movement.
Tremors when various muscles or tendons have been strained.
If you progress like I have, one of the first syptoms to get better was the ease in which a muscle or tendon would get strained, and they weren't so excruciatingly painful when it did happen, and they would heal much quicker. My hands, wrists and shoulders were the worst for that. Now it's not so bad, but has left the muscles very weak.
Hope this helps!
Posted by CaliforniaLyme (Member # 7136) on :
Hey you*)!*)! W E L C O M E !*)*!)*)!!!!!!! *********************************************
I once had fibromyalgia but it is 100% gone with IV Rocephin and it was 100% Lyme disease.
I hope yours goes away too because chronic pain sucks!!! I am grateful every day I don't have that anymore!!!!!!!!
Posted by TickTock4422 (Member # 12553) on :
Thanks for all the support.
I need some support, as I think I am going "crazy". Woke up again, still with same symptoms. I can't think straight to save my life. If this is herxing, how long will these symptoms lasts? I have to work!! Do they just get better eventually or what should I expect? I feel the antibiotic is giving me symptoms of MS.
My LYme MD did not prepare me for this huge interruption in my entire life, family, work, just functioning. I am so angry, and I cry all the time. I have called my MD's office, but do not get any real answers!! and this is a LYme specialist! I am an RN but for the life of me, I feel completely helpless and am unable to be objective.
I need to speak with someone with Lymes at length, I guess, for support.
Posted by kelmo (Member # 8797) on :
You're in Louisiana? There is another member on our board here who developed Lyme after Hurrican Katrina.
I understand your feelings of helplessness. Just do a search on this board for symptoms. I did that after my daughter was diagnosed. I spent hours every night reading posts and absorbing all I could.
Go to www.ILADS.org and read abstracts. You may have to read them several times, but you have a medical background and that helps.
I'm sorry you are ill. I just started treatment for an infection I probably got in 1990. I'm not sure what my prognosis is, at this point. BUt, I'm walking through the treatment and hope it does some good.
I'm more concerned for my daughter, though, she has it much worse and she has a life ahead of her.