lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I was treated with flagyl at too high a dose for too long. I started having adverse effects but was not aware of the cause until it was too late, and my llmd did not warn me or take me off the medication. I finally dropped it after reading the adverse events section of the drug description, and realizing that I was having a mirror image of what I read.
Bad news is that the damage, which is severe damage to the AUTONOMIC NERVOUS SYSTEM, is not reversing. I read that it does sometimes, in some people. This is serious stuff, and making my life just that much more miserable.
Has this happened to anyone else out there, and did it reverse? How long did it take to reverse, and what course of action did you take to help it along in healing?
I haven't seen a neurologist yet because I know what happened and I don't think there is anything to be done about it, from what I have read. Only time and some pain killers I believe.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
I have never tried flagyl, and i am scared to. Can you please give more detailed infor as to dosage, and what your very first symptoms were.
I would greatly appreciate it.
I also hope you get better.
Posts: 175 | From Pa | Registered: Aug 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
SYMPTOMS OF AUTONOMIC NEUROPATHY:
any vaginal irritation, discharge, or dryness not present before use of this medicine clumsiness or unsteadiness mood or other mental changes skin rash, hives, redness, or itching sore throat and fever stomach and back pain (severe)
black, tarry stools; blood in urine or stools; frequent or painful urination; inability to control urine flow; nausea and vomiting; pinpoint red spots on skin ; sense of pelvic pressure; unusual bleeding or bruising
DISCUSSION OF TYPES OF AUTONOMIC NEUROPATHY:
Autonomic neuropathy is another form of diffuse neuropathy. It affects the nerves that serve the heart and internal organs and produces changes in many processes and systems. Urination and sexual response Autonomic neuropathy most often affects the organs that control urination and sexual function. Nerve damage can prevent the bladder from emptying completely, so bacteria grow more easily in the urinary tract (bladder and kidneys). When the nerves of the bladder are damaged, a person may have difficulty knowing when the bladder is full or controlling it, resulting in urinary incontinence.
The nerve damage and circulatory problems of diabetes can also lead to a gradual loss of sexual response in both men and women, although sex drive is unchanged. A man may be unable to have erections or may reach sexual climax without ejaculating normally.
Digestion Autonomic neuropathy can affect digestion. Nerve damage can cause the stomach to empty too slowly, a disorder called gastric stasis. When the condition is severe (gastroparesis), a person can have persistent nausea and vomiting, bloating, and loss of appetite. Blood glucose levels tend to fluctuate greatly with this condition.
If nerves in the esophagus are involved, swallowing may be difficult. Nerve damage to the bowels can cause constipation or frequent diarrhea, especially at night. Problems with the digestive system often lead to weight loss.
Cardiovascular system Autonomic neuropathy can affect the cardiovascular system, which controls the circulation of blood throughout the body. Damage to this system interferes with the nerve impulses from various parts of the body that signal the need for blood and regulate blood pressure and heart rate. As a result, blood pressure may drop sharply after sitting or standing, causing a person to feel dizzy or light-headed, or even to faint (orthostatic hypotension).
Neuropathy that affects the cardiovascular system may also affect the perception of pain from heart disease. People may not experience angina as a warning sign of heart disease or may suffer painless heart attacks. It may also raise the risk of a heart attack during general anesthesia.
Hypoglycemia Autonomic neuropathy can hinder the body's normal response to low blood sugar or hypoglycemia, which makes it difficult to recognize and treat an insulin reaction.
Sweating Autonomic neuropathy can affect the nerves that control sweating. Sometimes, nerve damage interferes with the activity of the sweat glands, making it difficult for the body to regulate its temperature. Other times, the result can be profuse sweating at night or while eating (gustatory sweating). (Source: excerpt from Diabetic Neuropathy The Nerve Damage of Diabetes: NIDDK)
Autonomic nerves go to the penis. Damage to these nerves can prevent a man's penis from getting firm when he wants to have sex. This condition is called impotence (IM-po-tents). Many men who have had diabetes for many years experience impotence. (Source: excerpt from Keep your nervous system healthy: NIDDK)
Autonomic nerves go to the vagina. Damage to these nerves prevents a woman's vagina from getting wet when she wants to have sex. A woman might also have less feeling around her vagina. (Source: excerpt from Keep your nervous system healthy: NIDDK)
Autonomic nerves go to the heart. Damage to these nerves might make your heart beat faster or at different speeds. (Source: excerpt from Keep your nervous system healthy: NIDDK)
Autonomic nerves go to the bladder. Damage to these nerves can make it hard to know when you should go to the bathroom. The damage can also make it hard to feel when your bladder is empty. Both problems can cause you to hold urine for too long, which can lead to bladder infections. Another problem can be leaking drops of urine accidentally. (Source: excerpt from Keep your nervous system healthy: NIDDK)
Autonomic nerves go to the blood vessels that keep your blood pressure steady. Damage to these nerves makes your blood move too slowly to keep your blood pressure steady when you change position. When you go from lying down to standing up or when you exercise a lot, the sudden changes in blood pressure can make you dizzy. (Source: excerpt from Keep your nervous system healthy: NIDDK)
FOLKS, PLEASE BEWARE OF FLAGYL. If you are having a new symptoms of the nervous system, including the PERIPHERAL NERVOUS SYSTEM like numbness and tingling of the extremities, consider if it is a herx, or DAMAGE from flagyl.
I miss being on flagyl becaue it helped the lyme so much. I hope that I can heal one day and go back on it at a lower dose.
Posts: 1034 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I was having symptoms for a while that I did not connect to flagyl. Some of them are irritable bowel like condition, burning feet, numbness in hands, and sexual dysfunction. I was way gone before I made the connection and dug into reading about flagyl. You have to be careful because most doctors don't know the fine print on the adverse reactions to these drugs. They only look for the most common adverse events.
As time went on, it developed into burning, dry skin on my arms, burning palms of hands, and racing heart beats, sweating problems, etc.
Now I am devouring B vitamins, trying to recover.
Thanks for the well wishes. Read up on your meds folks. You are at the helm of your med. care.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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lymewreck36
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Member # 4395
posted
I would say to those of you who want to try flagyl and are afraid.....you must do flagyl at some point to get rid of the lyme. So you must try it. Once you are experienced in herxing, you will know what is a herx and what is not. A herx in a worsening of symptoms over several weeks that gradually gets better and leads to a higher level of functioning.
An adverse reaction keeps snow balling until you have fallen of the edge of the cliff. I can't explain it, but eventually one does realize that it is not a herx. Yes, sometimes it isn't apparent at first. Many times. That is why you have to be well tuned to the medication you are taking, and journal your reactions to them. You have to have this hightened awareness of symptoms connected to medication, and the adverse reaction list as well.
I know, it is confusing, but I can tell you, there are some syptoms of lyme that will never go away without treating the cyst.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi everyone. Isn't Tinidazole supposed to be as beneficial as Flagyl but safer to take?
Posts: 4682 | Registered: Oct 2000
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posted
I did flagyl, standard dose, with zithromax for 9 months. I developed painful neuropathy in my feet. I used the photonic stimulator, by bales scientific, which is near infrared light to cure the neuropathy.
I learned about it from a local practioner who is having great success treating diabetic neuropathy. Well it worked for my flagyl induced neuropathy as well. Symptoms have completely resolved but it did take a few months of regular use. I ended up buying the machine.
You may want to contact the manufacturer for a practioner in your area.
In any event I wish you much luck with this. I know how horrible it can be.
DL
Posts: 925 | From California | Registered: Sep 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I hate to say it but most of the symptoms you discibed can and are part of yeast and lyme.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I had peripheral neuropathy problems with flagyl, which went away when I switched to tinidazole. Never heard of autonomic problems from this drug, and I agree with treepatrol that this could just as easily be lyme, etc.
The permanent damage I incurred from a drug was from the quinolone group, and affected achilles tendons. At that time, the FDA was not even requiring any warning on this group about tendon damage, even though it was in the literature.
Posts: 8430 | From Not available | Registered: Oct 2000
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
TRee is right...
It's hard to determine what is atonomic disfunction due to TBD infection and what is induced by medications...AND what is a mimicking of autonomic disfunction as tbd's may cause.
While I have all the symptoms of bilateral peripheral neuropathy...two emg tests have determined that I don't have such a neuropathy...
As is the case with a lot of my symptoms past and present...the "normal maintream" reasons for the symptoms I present are non-existant.
I used 250mgs three times a day...I already had nerve disfunction so my only adverse symptom I could realize was lethargy...
I do think it is a necessary med...or at least another cyst buster is needed.......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I have autonomic nervous system disfunction. Mine was caused by years of Lyme.
I would recommend you get your amino acid levels tested. The doctor who treats my ANS disfunction uses the 24 hour urine catch test through LabCorp.
My amino acids were extremely low. Amino acids are necessary for proper ANS function. But, when they get too low, your body can't digets properly so you can't absorb the amino acids from food.
Following the amino acid tests, this is what I take for my ANS:
Essential Amino Acids (I take the brand Body Build, but he chose this specifically based on what I was deficiient in) Taurine Glutathione B-12 sublingual tabs with Folic Acid Vitamin C Magnesium Multi-Vitamins
I have seen an increase in energy since starting and my blood pressure has gotten closer to normal. Just recently, my pulse appears to be dropping to. I was alwaysin the 90's, now I'm in the 80's.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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