Lymes Disease
General Topic
Who has it now or had it. I have it now and it’s running me down terrible.
I had it September 2011.
Doxycycline for 3 weeks, a few days before it ran out, I asked my doctor to extend the prescription for an additional 10 days.. 31 days total.
The worst part is the fatigue. It lasted for 2 1/2 - 3 months.
Don’t make the same mistake that I did and force yourself to doing too much. It will only set you back.
Rest is the best thing.
Fortunately, I haven’t had any lasting effects.
I had it September 2011.
Doxycycline for 3 weeks, a few days before it ran out, I asked my doctor to extend the prescription for an additional 10 days.. 31 days total.
The worst part is the fatigue. It lasted for 2 1/2 - 3 months.
Don’t make the same mistake that I did and force yourself to doing too much. It will only set you back.
Rest is the best thing.
Fortunately, I haven’t had any lasting effects.
Got done with treatment 2 weeks ago...... kinda long story.
Hadn't been feeling well for a long time. I figured maybe because I'm 73 was the primary cause. My Doc, she didn't think so. I never had a tick bite I noticed so Lyme was not considered at first.
Last winter I went through the usual tests, the nuclear treadmill for heart, Chest scan, etc. Nothing serious found.
I continued to feel like crap all year and developed an ache in my left hip that was kinda bothersome. Other joints too, not as bad as hip but bad. Figured old man's arthritis I did. No energy, just really fatigued..Felt so bad didn't feel like fishing even. Not good at all.
This summer she decided to blood test me for everything. Took like 6 vials of blood. She called me up one evening and told me I wasn't going to believe it but I had very advanced Lyme's Disease with an antibody count that was higher than she had ever seen or heard of.
Sooo.... started off with 21 days of Doxycycline twice a day ( trivia , Dox is a very old antibiotic. Pretty sure they were our "no sweat" pills in Vietnam back when.) ;).
Then after a 5 day break I went IV antibiotic daily for 28 days. (They installed a Picc Line in my arm in a vein and ran it up to near a heart valve and left it in for the duration.) No big deal, just took an hour or so to do an IV dose every day for the 28.
Hopefully it's gone. Hard to tell because the Lyme antibodies can stay on in your system for a very long time . The test doesn't reveal Lyme's, it shows the antibodies I'm told. The joint pains are pretty well gone so that's a positive. And I don't think I'm as fatigued.
I have some chronic crap from too many concussions and a fractured skull + 2 brain tumors 15 years ago so feeling good is not as easy a call as it could be.
Kinda eliminated all my ice fishing last winter and summer this year too. No archery at all...
Still kicking though so it's all good. Trying to avoid Covid of course. ( I'm blood type A which apparently is not the best type far as covid is concerned).
Did get out 2 times rifle deer last month. My brother in law from the big city came up and stayed at my place for 3 days and nights. Naturally right after that, he and his wife both tested positive for covid.
Hypochondriac that I am I'm certain I have it everytime I cough. LOL
Be well guys and take care of yourselves.
Doxy is a good drug for a few ailments. I took daily it for 5 years for chronic rosacea. All the while I was stationed in Wash DC and living/hunting in Southern Maryland.....ticks was always a thing anytime you went into the woods....pretty much take it to the bank. Can't even count the times I had ticks stuck on me. Luckily the doxy kept me clean. I was tested for Lymes on my retirement physical and came back negative and clean. I still keep a few pills in the medicine cabinet just in case.
Had it in 2009. The fatigue was surreal. Never really slept and was really never fully awake. I remember the moment I decided to call the doctor. I was sitting in my easy chair watching SpongeBob SquarePants because I was too tired to change the channel. The remote was in my right hand and pointed at the TV.
I did a course of Doxy and it worked. That stated, I recommend getting rid of pro-inflammatory items in your diet like wheat and vegetable oils. I don't know if you ever fully get rid of it.
Doxycycline - heed the warning and stay out of direct sunlight. I work outside and didn't heed the warning. My face skin and back of hands cracked and bled. Know others as well. Tater, prayers for a complete recovery.
I have been tested several times for Lyme. So far so good. As Bluedog says as we get older we have more symptoms without the disease. I am a deer tick magnet. I have had to remove as 27 of the critters in a year. Permethetrin doe help repel them. Prevention is better than cure . Acting at the first sign of symptoms is better than the wait and see attitude.
First discovered 45 years ago in Lyme, CT. Tough break for residents of this town getting a disease named after them. Here in the North East we’ve learned to live with it. Permethrin is your best defense in not getting it and early diagnosis and treatment is critical. Many false negative tests so demand additional testing if symptoms persist.
I used to play bass in a band. My left wrist turned red and started swelling up. I went to my nurse practitioner and she took a blood sample. She said she wouldn't know the results for several days but gave me a prescription to take for 21 days. She said if I tested negative the prescription could just be thrown away. I went to the drug store and got the pills for about $20. I started taking it. The nurse called and said I was positive so I kept taking the pills. The swelling went down and the pain was gone in about a week. At the time another bowsiter had started the same medication the same time I did. He had the same results as I did. I couldn't tell what the medication was but it worked in a hurry and was cleap.
I don’t go in tick habitat except for spring turkey season. Over 30 years of that hunting I note where I observe ticks on public and where I don’t. Then I only hunt the places I don’t see any. I think this strategy has worked well for me. Only pulled out 3 ticks in last 15 years. I feel like this puts the odds in my favor of staying clean.
I could literally write a book on this subject - but I’ll try to keep it as brief as possible. Hopefully someone may read something here that may actually save their life or that of a loved one: I’m currently 48 years old. Up until age 38 or so you’d be hard pressed to find a more fit & active guy; constantly hiking, biking, lifting weights, etc. Then one day my left knee started to get achy. Each passing day got a little bit worse. On day 5 it completely exploded. I’ve had broken bones, surgeries, car accidents, etc., so I THOUGHT I knew what pain was. The pain I experienced in that knee made all the other things pale in comparison. After suffering like that for a few days I was sent from work to the hospital, where I got a shot of Torodol - which worked. Went to my family dr. who took bloodwork but didn’t find anything. He then sent me to a rheumatologist. Got tested for everything under the sun. By this time my symptoms included trembling in my hands, constant upset stomach to the point I would sometimes vomit, waking up during the night thinking I was taking a heart attack due to extreme tachycardia, I had muscle knots all over my thighs that were so big it was like someone placed acorns under my skin. My leg muscles were so spasmed & inflamed I couldn’t walk due to the debilitating pain in my knees. There’s more but I’m sure you get the picture. I saw about 7 different doctors, eventually having an MRI of my brain to check for early Parkinson’s Disease. All doctors found nothing. My family dr. stated “Your blood test showed you’ve been exposed to lyme........but you don’t have an active infection”. I responded: “So I have all the symptoms of the disease, I’ve tested positive for the disease - but I don’t have the disease”? Their response: “That’s correct” This went on for about 3 years, during which time all symptoms got progressively worse. I finally ended - up at a naturopath who listened to me for over an hour, at which point she finally said “I think I know what’s wrong with you. I can’t help you but I know someone who can”. She gave me the name of a certified Lyme Literate Doctor (LLMD). Upon my first visit he examined me, & stated I in all likelihood have Lyme, but we would wait for the blood results before initiating treatment. My blood was sent to a specific lab that looks at your blood under a microscope for the bacteria. I came back not only positive but positive for both short & long term infection, meaning I had the infection at some point in my life, probably felt sick for a week or so & felt better. At some point thereafter I was infected again at which point my immune system was simply overwhelmed, this began the spiral of symptoms. My dr. put me on a protocol of several different antibiotics. After about 4 months I was about 70 percent better. I had to stay on various protocols for the next several years; every time I ceased treatment symptoms would return. I had what’s termed “chronic Lyme”. I slowly re - built my immune system, & was finally able to cease any medication several months ago - thank god. I’m about 90% of where I was pre - infection. But many, many people aren’t so lucky. I nearly lost my career, spent countless days unable to get out of bed, watched my health continually decline, and was, quite frankly, dying. So to anyone reading this - If you or someone you know suddenly develop any inflammation - related symptoms, and your doctors can’t pin - point anything exactly, PLEASE, PLEASE google the nearest LLMD in your area...........It just might save your life. And PS - Wanna hear the best part of all of this????? The fact that most doctors refuse to believe that chronic Lyme even exists!!!!! Of all the doctors I saw - one of which is a personal friend - in their mind if it doesn’t show on blood test then in their mind you don’t have it, regardless of your symptoms.
I had it. The oncologist team that treated my cancer felt it was the largest potential contributor to my sickness.
It changed my life. It’s a terrible thing no doubt. Good luck.
Wife and I both had it, a year apart. Typical bullseye rash. Her doctor insisted no Lyme in eastern KS. Mine put me on 30 days of antibiotics immediately. She found another doctor who did the same.
Robin had more issues than I did with it. I guess we all react differently. Lots of doctors seem to have limited knowledge about it. I was also told a minimum of 30 days of antibiotics are necessary and that some people never fully get rid of it.
Best wishes!
I had it back when it first started. 2 ticks, 1 bullseye. Started feeling ill with a fever that kept getting stronger one day. Had a pain in lower stomach area. looked and there they were. Went to the doc and he said yup, you have lymes. He pulled them and gave me meds and the fever started going away as fast as it was coming on. That was 35 years ago and have had no effects. He said you are one of the lucky ones that had your body react to it and signal something was wrong.
Did any of you guys loose weight (fat and muscle mass) due to Lyme’s infection?
We have all had in family except 1 daughter,I also had rocky mountain spotted fever.Glad to not have any major side affects.I grow more ticks than deer is what all my friends tell me.Use good spray
Lost weight, yes, but only as a result of being unable to eat & exercise - BUT, one of the possible side - effects of Lyme is muscle -wasting, or atrophy. If caught early Lyme stands a much higher chance of being treated successfully. The problem comes in when a person has been infected for years before treatment is administered. At that point the standard 30 days of Doxy will be useless, and more prolonged protocols are called for.
"Did any of you guys loose weight (fat and muscle mass) due to Lyme’s infection?"
Sure did.... 2 years ago I weighed 206-210#. Right now I weigh 158# (same as when I was a sophomore in high school)
Be good except for the loss of muscle mass thing. Kinda drastic loss in arms, legs, and shoulders.
Oh well, not that many old men and for sure not many heavy old men. LOL
My oldest son died from A-fib when on Iv-Vacaomyasn treatment for Lyme 4 yrs ago, the dr. wanted him to stay in the hospital but he decided otherwise and was gone 48 hrs latter; his brother found him on the floor that morning right after signing on to work at his desk. The Lord giveth and the Lord taketh, Blessed is the Lord, the only way to understand it.
Chief, my story mirrors yours. I think mine started in Nov 2011. It was killing me and I was practically bedridden. Was crawling in my house on my hands and knees. Serious heart issues among many other things, and like you I could write a book, but I'm not going to do it here. There were nights I didn't think I'd make it until morning, and that didn't sound like such a bad thing by that point. I just wanted the suffering to end. A person, even a strong person who handles pain in stride, can only take it for so long, head to toe, unrelenting, every minute 24/7/365. I actually kept a detailed journal through the whole ordeal. Dealt with it for two years, on antibiotics, usually a cocktail of them, for about a year and a half. I too am in Pa and wonder if we went to the same LLMD? My guy, Swami, was in Hermitage.
Jjs, I'm sorry to hear that. You have my condolences sir.
JEFF, My doc is in Wyoming County. Were you able to recover somewhat? JJS - God bless. Unfortunately your story is waaaay to common.
Jon...sorry to hear about your loss.
Chief, yes, I'm ok. I ended up gluten intolerant afterwards(probably just got worse), but no other classic Lyme symptoms.
I "may" be dealing with it but have been tested twice and both negative.
3 years ago I went from feeling great (31 years old, very active) to feeling like I'd been hit by a truck every day. Constant headache, tired all the time, terrible joint pain, and muscle pain like I was bruised on my biceps, thighs, and quads with no visible bruising. This went on for almost 2 years.
Got tested for everything and all negative. I'm a forester and have had days I've picked 25+ ticks off me so Lymes was an obvious choice but 2 tests were both negative. Doc ended up giving me 3 weeks of Doxy anyway since the tests aren't real accurate but that didn't seem to work. I also did Teasel which is a natural method for Lymes.
After about a year and 8mo I started feeling better. Since then I'm generally normal but have had a few "relapses" where I will have a few days with symptoms again but fortunately not as bad as they once were, mainly joint pain and headaches.
I worry about it because I know the long term effects can be bad as I get older. However, without testing positive I really dont know what to do. Quit going to the doc because they would just test for stuff and tell me I was fine! Right now it doesn't really effect my everyday life and I'm able to do everything I want so I guess I'm just waiting to see if it gets worse again and, if so, go to a specialist or something.
Had in 1991-92, went undiagnosed for 1-3 years before then. Not sure when or where I was bit, but I had some serious issues until it was treated with antibiotics about 10 weeks. Didn't think I was going to make it to 30.
Caught it again in 2019, found and engorged deer tick on the back of the sack. Doc didn't want to check for bullseye rash just gave me the doxy for a couple weeks.
I have multiple joint replacements, metal pins, screws in parts of my body possibly due to the effects from over 25 years ago. The last report I saw stated it can develop an envelope, hide in the spine, other bones for many years then possibly re-emerge. IDSA and ILDAS are still fighting over the best treatment options. Before COVID-19 it was big enough (likely still is) to be a pandemic. Hundreds of thousands new cases every year, many go un-diagnosed. Plus about dozen other diseases come from ticks and you can get more than one disease from one at the same time.
Predeter - Based on what you’ve described, Im sorry to be the bearer of bad news, but I’d say you more than likely have it. Find the nearest LLMD in your area & seek treatment. Other than detecting a recent infection standard tests are useless & will always come back negative. An LLMD will send your blood to one of a few specific labs that will analyze your blood completely different from standard testing methods. Tonybear - according to the specialists I’ve seen - including what’s considered one of the best in the country - all agreed that if dealing with an infection that hasn’t been caught early, to eradicate the most amount of bacteria (because of several different factors) it will generally take 1-3 YEARS of therapy; then most patients still take a “maintenance dose” of antibiotics a few days of the month. The logic behind this is the fact you never truly eradicate the bacteria 100%, and because it’s a slow - reproducing type of bacteria, antibiotics a select few days of the month should kill enough of the bacteria to keep everything in check. I find it absolutely reprehensible Lyme has been destroying & outright killing people for decades but the only treatment is prolonged antibiotics, which never kill 100% of the disease..............yet we’ve developed a vaccine for covid in only 10 months. Absolutely mind boggling.
Predeter, I know how you feel. My doctors failed me too. They were lost. One guy wanted to operate on my knee because my joints were so swollen a synovial sack was bulging out the back. I refused. I had whole body systemic inflammation from the Lyme infection. That knee got better when I got rid of the infection.
I agree with Chief. Your next move shod be to see a Lyme Literate M.D. You can go to the ILADS website and request a list of names of LLMD's nearest you. That's how I found my guy.
I took standard Lyme tests at my family doctor and they came back negative and 'equivocal', so he dismissed it. At the time, I had a full blown infection and could barely walk. It even said right on the blood analysis paperwork, "If equivocal, send for Western Blot", and he didn't do it. That was a big mistake by him and caused me a lot of suffering for a long time. When I finally diagnosed myself with Lyme, I went to an LLMD and he sent a blood sample to IGeneX lab in Ca. for them to do their Western Blot test. It's better than a standard Lyme Titer, and better than many other Western Blots. It came back and said I had a current infection, and had it for a long time.
If you have any more symptoms at all, get to an LLMD. Request Western Blot at IGeneX lab.
Thanks for the info Chief and Jeff.
