I'm just wondering how everyone here who definitely has Lyme Disease would best describe their joint pain? Is it achy, or stabbing, dull or severe? I've been having many symptoms the last couple of months reminiscent of Lyme, but could also be MS or CFS, including extreme fatigue, frequent headaches (along with a couple migraines,) some leg twitching at night while in bed, memory problems, some dizziness, a sore neck (though I've always had neck problems,) and more. I've had some muscle aches and recently my wrist was painful for a days, but I don't know if any of that would really constitute as joint pain related to Lyme.
p.s. I see a neurologist tomorrow. I'm hoping maybe I can figure out what's wrong then.
First, I don't meet your one criterion in that I do not have a solid Lyme dx at this time. However, you'll find that often a clinical dx is made because of complications and varying accuracy and reproducibility issues surrounding the blood tests.
With that, my joint pains are not isolated to one or two large joints (which I've read is more typical in Lyme). It is widespread and bilateral, in my hands, feet/ankles, knees, and into my lower back. It fits the hallmark signs of inflammatory arthritis: It is worse in the mornings and it improves with light exercise. I would say it is dull and achy. I sometimes get more isolated stabbing pain, usually in my R shoulder, but it is not as persistent.
Neck stiffness is a common complaint among Lyme patients, as is leg twitching. However, I often feel that just about any symptom imaginable can be linked back to Lyme by some lists.
Thanks so much! A lot of what you've said sounds very familiar to me, and I'm definitely going to press the neurologist for a lyme test as well as an MRI so I can figure out, once and for all, what the problem is.
If you can, see if the neuro (or your regular physician) will order a "Western Blot." I had two Lyme screens at different times, but I only had the "ELISA" test. Don't ask me for details on the difference, but I know the Western Blot is supposed to be better.
Also note that Lyme can cause lesions on your MRI. I have lesions, some are tiny and some are larger, but they don't fit the "classic" MS picture in shape and location.
Thanks. I've been sick for awhile, but am new to Lyme. Is that a co-infection? My LLMD told me he considers all of the co's to be part of Lyme, though I guess they may be treated with different medications. My blood work for him is all still pending. I'll be sure to ask him this (and an every growing list of other Q's that I'm building) at my follow up.
Yes, bartonella is a common Lyme co-infection. I knew I had it even though my Fry lab test was negative because of certain specific sx like pain under the arches of my feet that feels like plantar fasciitis.
I did not think I ALSO had babesia, but my LLMD has been convinced from the beginning that I do, even though my babesia microti antibody test as well as the FISH test came back negative. Babesia is extremely hard to detect.
As with Lyme, co-infections often have to be diagnosed clinically. I did a short bartonella treatment (Rifampin + Zithromax) and herxed quite a lot. If I did not have bart, I would not have had a herx. I am now embarking on a babesia combo that will also address bartonella and, to some extent, borrelia: Mepron + Biaxin + Plaquenil + Bactrim (Ugh).
- Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
- Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
- Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
- Headaches, especially frontal (often confused with sinus) or on top of head
- Eye symptoms including episodes of blurred vision, red eyes, dry eyes
- Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity)
- Sore throat
- Swollen glands, especially neck and under arms
- Anxiety and worry attacks; others perceive as "very anxious"
- Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like
- Poor sleep (especially difficulty falling asleep); poor sleep quality
- Joint pain and stiffness (often both left and right sides, as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
- Muscle pains especially the calves; may be twitching and cramping also
- Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
- Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
- Tremors and/or muscle twitching
- Heart palpitations and strange chest pains
- Episodes of breathlessness
- Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
- Gastrointestinal symptoms, abdominal pain and acid reflux
- Shin bone pain and tenderness
- Fatigue and often excessive sleepiness
- High fever at onset of illness
- Night sweats that are often drenching and profuse
- Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
- Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
- Episodes of breathlessness, "air hunger", and/or cough
- Decreased appetite and/or nausea
- Spleen and/or liver enlargement
- Abnormal labs (low white blood count, low platelet, mild elevation of liver enzymes, and elevated sed rate)
- Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
- Joint pain (more common with Lyme and Bartonella)
- Anxiety/panic (more common with Bartonella)
- Lymph gland swelling (more common with Bartonella and Lyme)
In general, I have trouble with lists like these, though. They pretty much show how non-specifically people can be effected by these stupid bugs. The long lists and partial overlap is probably accurate, but confusing to me as a patient.
I'm stuggling with the elusvie bottom line in Lyme (and or co-infection) diagnosis. Symptom lists make it seem like just about anyone would fit. Hopefully, I'll get better with treatment and no longer feel so conflicted!
You say: "Thanks for the symptom lists. ... In general, I have trouble with lists like these, though. They pretty much show how non-specifically people can be effected by these stupid bugs. The long lists and partial overlap is probably accurate, but confusing to me as a patient."
Yeah, it's pretty confusing to the doctors too! Sometimes it's hit and miss for a while, since the symptoms are, as you note, overlapping and the tests are not always sensitive or accurate enough to give a clear diagnosis. I think of it as the tests being designed to pick up only two colors: 'red' or 'blue' -- but the bugs themselves are all various shades of 'purple' -- so maybe the tests picks up a hit or maybe it doesn't, because sometimes the purple bug is close enough to looking red or blue for the test to show a positive.
That's a purely made up analogy, but helps me not to get too fixated on the tests and to focus on my symptoms ... tho of course the docs tend to focus on, yes, the tests.
Thanks, I appreciate your remarks. Like many, I'm all too familiar with how confusing this is to doctors! It took me 5 specialists and over a year before I went to an LLMD.
And your advice about the Western blot is very true. I had negative ELIsAs in Jan and July. Because of that, my doctors wouldn't order a W. blot. My LLMD finally did, I'm still waiting for the results.
Thanks for the symptom lists -- I have Lyme and Babesiosis but tested negative for Bartonella -- however, looking at your list, I am wondering if I have Bartonella too (not another bug!!).
I've printed out your list and will take it with me in a couple of weeks to my LLMD checkup; maybe we need to rerun the test.
Thanks much for the data.
And Wonko, I hear you: I saw about 20 doctors and heard all kinds of balderdash and misdirection and denial from them. Some of them tried really really hard, but the amount of denial and condescension in the medical community about Lyme+ is overwhelming. It's so politicized that even excellent, thoughtful, kind, hardworking doctors often buy in to denial.
I recently called an old, old friend who is one of those good, caring doctors and happened to mention to him what's going on with me re Lyme+ diagnosis and treatment, and he just SCOFFED. This is a guy I've known since we were kids! He knows I'm no nutjob. But he's been brainwashed too. So I sent him a copy of Cure Unknown. Hope he reads it.
Bottom line: everybody keep plowing ahead! We can do this.
Cam lyme that you didnt know you had go into remission over 21years, I say I didnt know I had it but I was bitten by a tick, my husband pulled it out , and a few weeks later I did get sick, no rash, but terrible fatigue all those years ago Lyme existed but no one offered a test or anything it wasnt in the Media much, I got a bad ear infection, bad headaches ,palpitations,came to the US to live and had awful leg and hip pain, had xrays and nothing, went back on vacation to the UK and got a bladder infection that was treated with antibiotics, after that I felt better , since that time I have had a meryead of the symptoms you describem I have battled anxiety at times ,and I did get a lyme test done came back negative, am taking Adrenal capsules at this moment in time , they have made me feel better, I guess I am asking can I still have Lyme or will it have been cured in 21years by a few doses of Penicillin and ante biotics.Sorry about the big long post .
Lyme goes into remission. Like chicken pox, the infection can fade from view and resurface later at an opportune time -- say post surgery or during an extremely stressful event -- an unexpected death of a loved one for example. This is all purely anecdotal, but seems to be the case.
Back to the original question, I have stiff joints. And when I use the joints that are stiff, the surrounding muscle is sore. This is some form of synosivitis according to my LLMD and may, just may, go away with treatment. Internet research shows that a drug called plaquenil will improve this.
I was diagnosed wih Lyme disease for the first time in 2002. I had the bulls eye rash on my left hand and was sent to a Dermatologist by my general Dr. The Dermatologist misdiagnosed the rash as...well just that a rash and gave me some ointment which of course did not fix the problem.
I was admitted in and out of the hospital with chest pain, vomitting, random black outs and a high grade fever. In the state of Texas after so many visits to the hospital the state requires several tests, HIV, Lyme, and a multitude of other tests and THAT is how I was finally diagnosed with Lyme disease, and started treatment. I had Lyme disease along with the co-infections epstein bar virus and parvovirus. The parvovirus caused the fever, vomitting, black outs etc. I actually developed hepititus due to all of the medications while I was in in the hospital...the meds were causing liver problems. It was a very scary time for me and my family. I followed up with 4 weeks of oral antibiotics and was told by the IDD (infectious disease doctor) that I was completely well, and I would never have an issue again......
For many years I have been having signs of Lyme disease but I also had a thyroid that was functioning by synthroid so whenever I felt lethargic or had Lyme disease symptoms I was always tested for my TSH levels, and of course they would come back fine...NO ONE thought to test me again for my LYME!!!
I was rushed to the ER with numbing and tingling pain all on my left hand and arm. I was terrified and convinced that I was either a. having a stroke or b. having a heart attack...Neither of these were likely being that I was 26 years old. The ER Doc sent me to a spinal surgeon thinking I must have a pinched nerve in my back and HE is the one that saw the history of Lyme and said I needed to be tested again, it was possible it was back....Now I was really confused and decided to research it and the CDC said the chances of having a relapse or second occurance were 20% so not very likely. Well, I did come back positive and decided to go see the IDD that treated me before. Not only did she not remember me but she didnt keep any of my records and MY AUNT was a nurse for her!!!! She said we needed to skip all the oral antibiotics and go straight to the IV meds. This was a conflict of interest in my opinion being that she just opened a new state of the art IV infusion facility....I of course declined and she offered to put me on 6 weeks of doxy 200mg a day...after 6 weeks I tested again and came back clear.
After I got married in Sept, I knew it was back I could feel it...I was tested and guess what! Positive again for the third time!!!!
This time not only was I positive but I also had a co-infection of Rocky Mountain Spotted Fever. I was just terrified at this point and I decided once and for all I was going to get a Dr that knew what he was doing this had to end!!!
www.lymenet.org is the place that I found my Dr in the DFW/Texas area but they are a HUGE resource for Drs. nationwide, plus it is nice to talk to people that understand what you are going through.
Anyway, I am on aggressive antibiotics...400mg of Doxy daily and 1000mg of Ceftin daily along with 14 supplements. I take 35 pills a day. This was VERY difficult for me to swallow....ha. I have never been one to pop pills and prefer natural remedies as opposed to drugging myself but I have been on treatment for almost 60 days and the changes are AMAZING.
Tonight is not the best because I am suffering joint pain....I mostly have it in my knees and calves and ankles, and I relate the pain to growing pains, when you are a kid and you are growing you just have that sore, achey pain that is so deep you cant use heat or anything to get it to diminish.
Well, I hope this helps anyone that had any questions. I just joined the site so please feel free to ask questions or post about you and your treatment I would love to learn about others!!!
I don't know. Everyone I have talked to has said that once you go to IV meds there is no going back. They basically said you build up an immunity to oral meds so to try everything possible before heading to the IV method.
My biggest concern is of course contracting staff infection due to a pic line. I mean IV pic lines have their own possible issues.
I am to the point of whatever it takes. I pray every day that I am getting better. It really ***** because I am a newlywed.....just married in September and lucky for me my husband is very supportive but I feel terrible that I always feel so bad.
Could anyone tell me if they have experienced this kind of knee pain with relationship to Lymes disease?
Joint pain exists in left knee which makes walking painful
then at times mostly while sitting or laying down an excruciating pain comes to a localized spot. This pain seems to come on and escalate much like a labor pain does - it reaches a crescendo and then fades away. It can last 2 seconds - 20 minutes and come back in a few minutes or a few days. The soft tissue around the knee is tender to the touch and feels somewhat like a bruise and the skin has a sensitive prickly feel that hurts to even lay it on a soft matress. The knee itself is extremely painful when there is any lateral movement.
My knees feel swollen sometimes, but everyone is different from everyone else, so I hope you and your docs are considering the possibility of Lyme, if for no other reason that to be sure you don't have it. Best wishes!
I caught lyme while in the army. The pain was unbelievable. I woke up biting the wound one night. The pain in my shoulders and spine got so bad oxy or booze could not take the edge off. I doubled the treatment regimen which was then only 5 days and took flagyl as well to increase my chances of a full recovery. Been 7 years and it never came back. I got hurt pretty bad in the army. During my physio I lost about 30 pounds and started to get ripped again. At that point the pain in my joints came back intermittently. Not lyme bacteria, more like leftover toxins in the affected joints. Did acupuncture and aggressive dry needling to get them out. Seems to be working so far.
I echo Jackie's concern. If you have Lyme Disease, a spinal injection of steroids could prove catastrophic for you. It might decrease inflammation providing short term relief, but it will suppress the immune system, which can allow a Lyme infection to get much worse. I went from feeling crummy to a long list of very serious symptoms after I took steroids for a misdiagnosis.
If you think you might have Lyme, you need to find a LLMD to get checked out properly for it.
Joint pain can be caused by a wide variety of things. I doubt that leftover Lyme toxins would cause joint pain 7 years later without having caused pain all along.
Leftover toxins is the IDSA's official answer for people who continue to suffer from Lyme Disease after the standard treatment is completed. Unfortunately, they cling to this belief even when a patient experiences worsening and even new Lyme symptoms.
I am familiar with acupuncture. It did amazing and surprising good for my allergies while I was taking it for something else. But I haven't heard of dry needling. What is that?
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