So this is my story... I am 45 yrs old. Live in NJ. (live in the city in NJ) Have a summer home in woody area of Massachusettes. One month ago while in Mass I had an itch on my ankle, looked down saw an obvious bite of some kind. There was yellow pus coming out of it. Seemed to get worse (spotty red, pink, very itchy) over a few days. Went to doctor, he said it was a spider bite. Was given clindamycin and predisone for 10 days and it cleared up. I felt fine otherwise. Other than a mild headcold that lasted about 3-4 days.
Last week (5 weeks after that incident). Felt very itchy on my leg. Not the same leg as the ankle incident. I looked and there seemed to be 2 mosquito looking hives. Shortly after that, there were 3 more on same leg, different area. Very itchy. By the next day they had doubled in size, became very red, burning sensations. I rubbed cortizone on them, put cold rags on them, by the next day they began to feel better and began fading but I started to think Lyme so I went to my doctor in NJ. This was 4 days later. By then, the bite/rash was very faded. Showed her the pics from 4 days earlier and she thought Lyme but said Lyme rash wouldnt fade that quickly. She ordered the test anyway and told me I would have to come back 6 weeks later for a follow up test. I asked her if I should start treatment anyway and she said no.
I know that the sooner you start treatment for Lyme the better so if it was Lyme I wanted treatment now. I decided to go to a doctor in Mass. I showed him the pics and he didn't hesitate...he gave me 500mg 3 times a day for 21 days or amoxicillin (i was on doxy last year for an infected cyst and had really bad side effects with it). He said the burning, itching and the fact that I feel otherwise fine is not consistent with Lyme and that the rash MAY or MAY not be Lyme but in that area, a rash + woods = antibiotic treatment. They dont wait for test results. They sometimes dont even run tests and just base on clinical diagnosis. Now that I think about it...I have felt alot of tension in my face, and some pins and needles feelings but I have been so stressed!
I was crying in his office. He said I would be fine and even wrote on the back of my prescription...DO NOT WORRY ABOUT BECOMING DIBILITATED WITH LYME. YOU WILL NOT DEVELOP CHRONIC LYME IS YOU TAKE THE ANTIBIOTICS AS PRESCRIBED. DO NOT GO ON THE INTERNET AND GET MISINFORMATION AND SCARE YOURSELF!
So the first test came back today and was negative. This is 5 weeks from the first incident, 1 week from second incident and prior to antibiotic treatment. The second test is set to be done 6 weeks from now but I will have finished my 3 week antibiotic treatment by then. Are those results going to be useless now? If I test negative how will I know if I ever had Lyme to beging with or if its just negative because of the meds? And if its negative because of the meds does that mean I am Lyme free or does that mean the meds surpressed the disease and in a few weeks, months, years I will be positive and be chronic? If I test positive does that mean the medicine didnt work?
To make things more confusing...a family member showed the pics to his friend who is an infectious disease doctor and he said its NOT Lyme!
I really do not know enough about Lyme other i got it and i got confirmed with a blood test right away.The symptoms i have are a multitude of strange things,Head hurts, shoulders hurts,my skin at times feels like many needles are in my skin,legs hurt , tired all the time to the point of not being able to get out of bed sometimes,sun bothers me ,laud sounds bother me ,some nights i can not sleep at all.I seem to not remember things for one minute to the next.Some days as i drive my car i feel i can not judge how fast they are going and i do get scared to pull out in front of another car.I took the antibiotics one 2 weeks then 3 weeks during that time i felt really bad .I so hope and pray you do not have Lyme ,do not get alarmed yet until a blood test confirms yes or no .I found i am having a hard time with this because i can not find a Doctor to tell me how this is even going to play out or how long i have to deal with all this ,but in Texas not so many people get this disease.Id stick with the Doctor who gave you the antibiotics .Insist on a test.And go from there ,I do wish you all the luck .
Hi Dana, I have chronic Lyme disease and didn't find out I had it for many years. You're very fortunate that you are informed and taking the bull by the horns.
However don't worry or panic. You took the antibiotics and that's the prudent thing to do. GOOD for you for getting a second opinion!
Let us know how the test comes out. You're in my prayers!
When I went to the dr's office in Mass - the rash/bite or whatever it was was fading. But I took pictures of it when it first happened and showed them to the nurse. She immediately said OH THAT'S LYME. YOU HAVE LYME. Then the dr walked in and looked at my skin and saw nothing but then he looked at the pictures and thats when he said YEAH...THAT THAT LOOKS LIKE LYME. Thats when I started to get upset and crying and he told me to calm down and started asking more questions. He asked me how I was feeling...fever? tired? achy? pains? anything? and I said other than being a little tired and some pins and needles feelings (which I figured was stress related)....I felt okay.
I gave him the history...he said the first incident (on the ankle) did not look like Lyme at at all. But the second incident (which brought me to his office) MAY OR MAY NOT BE LYME...which I think he just said to calm me down and thats when he said if it is Lyme you caught it very early and YOU WILL BE FINE! He said he didnt understand why my dr in NJ didn't just start treatment. I asked him if he should run tests and he said since my other dr already that he wouldnt cause he was just going to start treatment based on his clinical diagnosis. He said he didn't think I needed to be tested for other infections based on how I was feeling but if I wanted to that I should ask my dr back at home to run them.
Some questions I have:
Would the rash have began to fade in a day or two if it was Lyme?
I was there on a Friday and noticed the rash/bite(s) Saturday and Sunday..is that too soon for it to be a Lyme rash?
Is amoxicillin effective? I know doxy is the drug of choice but I hated the side effects last time I was on it last year for something else.
I know alot of people have allergic reactions to amoxicillin...I am on day 6...if I was allergic, I would know by now, right? I am not good with taking medicines (either have bad reactions or just dont like taking them) so if I start toe feel weird on meds I dont want to panic and stop taking them. Like this morning ...I had a single hive (but I am prone to random hives occuring) and I was about to stop taking the meds thinking I must be allergic!
JPFB said:
Hi Dana, I have chronic Lyme disease and didn't find out I had it for many years. You're very fortunate that you are informed and taking the bull by the horns. I too would ask for the test to be sent to Igenex laboratory. That's where my Lyme doc sent mine. You'd rather know for sure for your own peace of mind.
However don't worry or panic. You took the antibiotics and that's the prudent thing to do. GOOD for you for getting a second opinion!
Let us know how the test comes out. You're in my prayers!
Hi Dana, I would doubt seriously you have Lyme. There two western blot tests LgM and LgG. At your stage only the LgG is indicative of Lyme and it requires two of the three bands to be positive. Your treatment was done correctly by the doc in Mass. Maybe you had lyme maybe you didn't but you don't now.
Heres the thing, and this may not be the BEST explanation. Either you have active Lyme or you don't the test are very accurate. That doesn't mean for some folks there isn't some results from an infection. A few year back I got an infection that effected my heart resulting in congestive heart failure. I took ABX to get rid of that infection and its gone, I can find evidence of that strep still if we do serological testing (lyme testing is serological) I don't take antibiotics for my heart but I do take medication. I could attempt to cure that infection till the cows come home, and I would still have heart damage. The same thing with my old college roommate who got meningitis. He still limps the antibiotics that killed the infection will not take away the limp he got from the infection. He could take them for 40 years and still would be limping.
A small percentage of folk who get lyme have effects beyond the initial infection. of those most get better within year or two. There are a few who have additional complications, but that is not because of active infection. I know its appealing that all these things can be cured by taking a few thousand dollars worth of ABX, but it simply isn't true. There is nothing simpler to find than active infection in the body. When THAT is controversial RUN and RUN quickly
My Lyme treatment was pretty simple.I pulled a tick off my leg and got a nice looking bulls eye rash three days later.I went to the doctor the next day and he gave me two weeks of Doxy.It faded the rash to about one third of the color intensity it once was,but the color intensity started to increase again over the next couple of days.
I went back to the doctor and he gave me two more weeks of Doxy.The rash went away and I have had no lasting effects what so ever since then.From what I have read from your story,your bites could be from chiggers.I have had chigger bites that look like tick bites without the rash.But keep taking the amoxy.Personally I am a four week of abx's guy versus 2 to 3 weeks,but that is just splitting hairs on my part.
I am just really scared. Whenever I heard about Lyme it was always horror stories. The dr in Mass said that the horror stories are what are mostly reported on in the news and on the internet. He said MOST people do well when found early and treated early. I am afraid I won't be one of the MOST people. I have seen even on here that some people were treated early and are still suffering and/or even disabled and that freaks me out!
I am still praying its not/wasnt Lyme. The first test was a week after the rash/bites appeared so I know its too early to tell from that test result (which came back negative). But I certainly did not want to wait 6 more weeks if it is Lyme (which is when my dr said to be retested) to start treatment.
I am on day six of Amoxicillin. Feeling alot of pins and needles sensations (which I was feeling before starting the meds) and I had one hive today. Praying I remain feeling okay.
I don't want/like to be on meds so part of me wants to stop the meds. But if its Lyme I know I have to be on the meds but I don't like/I am scared of side effects. I have never been on Amoxy before that I know of and I have never been on any antibiotic on this high of a dose for such a long period of time. I read alot about "herxing" but I dont know if that is something that only happens in patients with long term Lyme on even longer or higher antibiotic treatment.
I tend not to handle stress well which is why I am having a really heard time with this. I am grateful I can use this site as a sounding board for my worries and concerns.
At someone's request, I read your entire thread and I am responding:
Do you remember this line "The worst thing we have to fear, is fear itself"?
No, I am not saying it is all in your head. Many doctors told me that about my Late Stage Lyme. I also wasn't treated for 10 years after I was bitten.
Unfortunately, comparison to other patients is very dicey. This is because Lyme (and its co-infections) behave so differently in so many different people.
Whether or not you have Lyme (or any other infection) in your body may not be the most important point right now.
Based on what you have said about fear and stress, I realized how much like me you sound.
My emotions have made my symptoms worse and probably caused some of them. This DOES NOT mean I am crazy or a hypochondriac, it means I am human.
There are now countless peer reviewed studies proving the effects of attitude and emotions on PHYSICAL disease.
I suggest you consider a form of meditation and relaxation to help you out. This will improve your life regardless of your status as a Lymie or not.
Massachusets has one of the best insight meditation centers in the country. And its called Insight Meditation Center and is located at a place called "Spirit Rock". I practice the same methods here in MN and am very grateful for their effect in my life. Also, their programs are all donation only.
Best of luck,
Tom
dana said:
I am just really scared. Whenever I heard about Lyme it was always horror stories. The dr in Mass said that the horror stories are what are mostly reported on in the news and on the internet. He said MOST people do well when found early and treated early. I am afraid I won't be one of the MOST people. I have seen even on here that some people were treated early and are still suffering and/or even disabled and that freaks me out!
I am still praying its not/wasnt Lyme. The first test was a week after the rash/bites appeared so I know its too early to tell from that test result (which came back negative). But I certainly did not want to wait 6 more weeks if it is Lyme (which is when my dr said to be retested) to start treatment.
I am on day six of Amoxicillin. Feeling alot of pins and needles sensations (which I was feeling before starting the meds) and I had one hive today. Praying I remain feeling okay.
I don't want/like to be on meds so part of me wants to stop the meds. But if its Lyme I know I have to be on the meds but I don't want to/I am scared of side effects. I have never been on Amoxy before that I know of and I have never been on any antibiotic on this high of a dose for such a long period of time. I read alot about "herxing" but I dont know if that is something that only happens in patients with long term Lyme on even longer or higher antibiotic treatment.
I tend not to handle stress well which is why I am having a really heard time with this. I am grateful I can use this site as a sounding board for my worries and concerns.
Hi, Dana, I am sorry to hear that you are having such a hard time. You do seem very stressed! Point number one is that the firt doctor that you saw seems to have given you good treatment and care. It seems that he didn't want to give out antibiotics without the labs since you didn't have a confirmed tick bite ( you know, to prevent super-bugs from over use of antibiotics). Based on description alone, none of the bites that you describe fit the classic tick bite. Also, ticks don't usually bite and let go right away. They're really sticky buggers and will grab on pretty tight and stay that way until engorged, which can take days to weeks. You'd NOTICE for sure if you had an engorged tick on you. You've also had a negative Lyme test and the second later test is later for a reason. As mentioned by Tj above.
Second, to address your concerns about "herxing". Any information you have on this is BAD INFORMATION. Do not visit that site again. This is NOT a NORMAL part of treatment for Lyme disease, and terrible reactions are often caused by unscrupulous practitioners prescribing large doses of unnecessary antibiotics claiming that they cure "chronic lyme". this is patently false. If a practitioner tries to sell you that line, run.
You also mentioned being concerned about taking Amoxicillin. Unless you have a penicillin allergy, it is a pretty safe antibiotic that has been around for many years. As with all antibiotics the biggest side effect is stomach and bowel distress. This is due to the fact that antibiotics not only kill bad bacteria, but thay also go after the normal, healthy bacteria that live in our bodies. You can help by replacing flora through yogurts, kimchee, other fermented foods or ask your doctor about taking an over the counter probiotic. One of the surgeons I used to work with always prescribed acidophillus with every antibiotic he wrote for. That may help too. Allergic reactions usually happen soon after being exposed to the offending substance. In some cases one can develop an allergy after repeated exposure to a substance, kind of like healthcare workers who develop allergy to latex after many years of exposure. That scenario doesn't really apply to this course of Amoxicillin that you're on right now. An allergic reaction includes severe shortness of breath, angioedema (facial swelling - this is quite severe in appearance, and if it happened you wouldn't have any doubts as to what it was), and tachycardia (increased HR). These symptoms need to be treated by the ER.
Bottom line is this: if the tests you have taken so far are negative for Lyme, then you do not have Lyme. It does not lie dormant and come back out years later. This is yet another myth about Lyme disease.
Hello Nanny,my doctor will not give me any antibiotic just gave me 21 days and then said sorry i can not help you anymore
Nanny T said:
If I were you, I would ask either doctor to do a Western Blot Lyme Test. This test will come back positive even if you are on antibiotics and it will show if you had Lyme disease and whether or not it's active or cured. Whatever you do don't stop taking the antibiotics. If you have caught LD the earlier the treatment the better. Otherwise you will end up like me and a lot of others still fighting LD 20 years later. Please keep us posted and Good Luck! Prayers for you!
I’ve been trying to stay calm and relax in recent days. Think I am handling it a little bit better.
I read so much about Lyme disease even before this happened to me that I truly don’t know what to believe. so much of it is contradicting.
My main concern right now is that my current treatment is correct .
I chose not to doxycycline because of bad side effects when I took it for something else. But I’ve read a lot of articles saying that is the drug of choice Because amoxicillin doesn’t always work .
I am on amoxicillin 500 mg three times per day for 21 days.
The doctor assured me it was effective treatment.
I’ve seen some articles that say treatment should last at least four to six weeks and no less.
Then I read other articles that say 14 to 21 days is adequate.
Very confusing.
My first test came back negative but that was only a week after the rash or whatever it was appeared. I still feel fine. No flu like symptoms. No joint pain. The things I am feeling I don’t know if they are possible Lyme symptoms or side effects of the medicine or my anxiety such as body tenseness , numbness and dizziness and pins and needles .? I know I have to wait a few more weeks to have a second test.
I’ve read that after antibiotic treatment test might show up negative and that can be confusing because how will I know if I am negative meaning I never had it or I am negative meaning it’s not being detected because of the treatment and if it’s not being detected because of the treatment does that mean the treatment was effective or does that mean my symptoms are going to come back somewhere down the road?
Dana,my advice to you is to stay off these internet Lyme blogs(all of them)don't do any research on Lyme,take your amoxy and just live your life like you did before you got bit.Just relax,you will be fine.
Igenex may do a western blot (FDA approved); I don’t know. But their reallreal claim to fame, asks how they really make their money is on the texting that you’re referring to…the kind not approved by the FDA. That test is a load of wasted time, worry and money. We are in the process of removing posts that contain reference to it. It is not accurate in detecting Lyme, but is used by so called Lyme Literate MDs to bilk unsuspecting, nervous consumers out of hard earned money and provide false hope for curative treatment on high dose IV antibiotics for years, that does nothing of the sort.
WalkingBarefoot said:
Hey Natty T (Walking Barefoot here): is this the test called the IGenex? Am I spelling it anywhere near correctly? I believe that is the test I took, which is not approved by the FDA, for which I have NO respect whatsoever, as they need/want every disease to fit into a nicely categorized box, with no drama. I am using alternative methods no antibiotics and for good reason, but my story is long and I am still in the process of unraveling the mysteries of this disease. Mine was dormant for many years, surfacing after a surgery with heavy duty of course anesthetic which my already compromised immune system could not handle, and 6 months down the road, my holistic physician, yes a real doctor - ran this test, coming back with a positive. I just looked it up and it was the IGeneX. Mine is chronic, but I intend to win. Period. Yup I just looked it up Western Blot is done by IGeneX.
I had a PICC put in. My current protocol is.... ......5 weeks so far IV rocephin, 2 g, 5 days on, 2 days off ......2 weeks so far IV flagyl, 500 mg, 2 days a week ......oral rifampin 450 mgs, 5 days on, 2 days off (4 weeks so far)
I've seen zero action with the exception of a bad anxiety day after starting rifampin. It blew over in one day. I have made no improvements.
Yesterday, I felt terrible. I do today as well. I'm not sure if this is finally a herx 5 weeks into IV treatment. I have terrible diarrhea (sorry, tmi) I feel very weak, and foggy. I just want to lay down. I feel kind of fluey and out of it. A little nausea and anxiety as well. I just feel worse than my normal crappy baseline.
Could it take 5 weeks to herx? Or, is this a toxic reaction to the meds. I just want to veg on the sofa all day. I really feel run down and awful.
I wish I had better news to share, especially for those who also just started IV. I have read in several places that it can take 3-4 months or longer to notice improvements....even on IV's. So maybe 5 weeks isn't that long of a time.
Zach -thank you for being so optimisitic. The conflicting info I read was not just blogs or people's stories/posts but also some medical articles. Living in NJ (and in the northeast in general) Lyme is big news this time of year. Anyway...that explains why I have so many questions and concerns. I knew someone growing up who had Lyme Disease and she was not well so thats my main frame of reference with this condition. I am hoping for the best outcome. Still don't even know if I have it since I saw three doctors and one said yes, one said no and one said maybe. I had a negative test (but done only a week after "rash" so not conclusive yet).
Zach said:
Dana,my advice to you is to stay off these internet Lyme blogs(all of them)don't do any research on Lyme,take your amoxy and just live your life like you did before you got bit.Just relax,you will be fine.
The Igenex testingg is fully researched. Its been around since roughly 1959. Western blot is a standard methodology used for thousands of serological reasons. Igenex offers their "lyme version" as experimental.
Don't worry about Horowitz's book being above your medical acuity level, it well above his as well. Looks like he is going to lose his license again.
The FDA incidentally enforces policey including determining the framework. Igenex testing has been rejected by the serological community who feed into an advisory committee.
