Lyme arthritis. And a meniscus tear

Hi Hoping to Walk!
Welcome to our community!! I'm so glad you found us.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.

No, Lyme arthritis doesn't go away after 6 months. I've had mine for the last 44 years. I first experienced it at the age of 9.

And your doctor is correct, surgery or any other trauma will only make the Lyme worse. I had arthroscopic surgery on my knee when I was 16 yrs old, and they said it was the healthiest knee they had ever operated on! Yet, I was in agonizing pain all day and night. Even though I was 16 yrs old, I couldn't sleep much due to it, had to wear a leg brace and not participate in any physical activity much other than walking.

Most people who relapse find that it's harder to heal the next time around.

2 weeks of abx is definitely not long enough, not even with a PICC line. The Lyme bacteria replicates in the body at a very slow rate - every 3 - 6 weeks only and that's the only time it's in the bloodstream to replicate, then it quickly moves out of the bloodstream and 'hides' in the tissues, bones and organs. You will likely need to be in treatment for at least 8 weeks or longer. The current thoughts are to stay in treatment until 2 months past the resolution of all symptoms.

A meniscus tear will show on a MRI. I would start there. Osteoarthritis will show on a x-ray.

I have horrible knees - suzy jockette since I could stand up. Mom says I never walked, I just started out running.

Then I got lyme at your age. First thing that happened was my knees hurt so I went and got steroid injections in both of them. Probably not the best thing to do is what everyone told me. I did not notice that my knees hurt any more from the injections, but my lyme symptoms intensified. Now would that have happened in spite of the injections??? I have no idea.

If your knees are bad and you need to calm them down, have you tried Hyaluronic Acid injections? That is the roster comb. It is VERY expensive if you do not have good insurance. It is a series of 3 injections (anyway that is how my orthopedist does it) and it worked for me for a long time (6 months) and then I tried it again and it worked, but the 3rd time it was as if I had done nothing.

I have been "healed" from lyme now for about 2 months and I am going to have steroid injections on Monday. I hope they do not bring my lyme out of remission. If I can handle the steroids, then I know I can handle the knee replacement which I so desperately need (both knees).

Instead of a cane I use trekking poles. They are awesome and have a little spring in them.

I wonder about the term "lyme arthritis" . Its a word like fibromyalgia. There is nothing technical about its description.

Lyme body and joint pain can be from many lyme related issues. But for some reason its all balled up into "lyme Arthritis".

Has your Dr proven its lyme arthritis? Or is this an opinion.

Dont get me wrong, I understand your pain, I've had it for a couple decades. I just dont get medical professionals that use band-aid words. If you ask the same docs who use this term exactly what it is, they cant answer you.

Often the pain felt in joints is actually pressure on the joints from adjacent, non-joint tissues that are very tight, shortened, or constricted. But you feel it in the joint.

Remove/fix tension in surrounding tissues and the joint can feel better in many cases. Most Drs dont get this. If they did, they could help the patient in pain a little better. Lyme tightens the facia (netting) under the skin, as well as muscle, and joints can take the abuse from this and start to wear and get inflamed. Yet they know very little about facia.

Like a worn suspension or steering components on a car wearing out the tire. The worn tire is the result, not the primary issue.

Of course having lyme itself in the joint is different, hard to know for sure without joint fluid tested, and is usually not known for sure when a Dr uses this term.

sorry to sound like I'm ranting again

Have you had a lyme test?

I don't think the one antibiotic will help you with lyme.

Are you seeing a llmd at all?

Am I correct in thinking you have had only 30 days of doxy at this point?

Just trying to gather all the information for a better understanding in how I might help.

I so hope it works for you.

It sounds like you are in very good hands and I will keep you in my thoughts as you get the new meds.

You are very fortunate that the only symptoms you have are your knees.

Hoping to Walk. I honestly have never heard of a person WITH lyme that ONLY had knee problems. I seriously would love to see your lyme test results. If you are uncomfortable with that, I understand, but I definitely think you should get a second opinion.

For 30 days of doxy to work is miraculous to say the least!! Especially since lyme came back in 8 months.

I have 2 very bad knees and have menicus tears on both of them and had arthroscopic surgery to smooth out those tears.

At the same time I had osteoarthritis that started when I was in my teens and has become to the point where I need knee replacements.

Then I got lyme. But my lyme did not just go and reside in my knees. It was all over my body in every nook and cranny.

Your journey is your journey. This forum is just here to try and help you in that journey. I read in your post how much admiration you have for your doctor. Just remember that he is a human and prone to mistakes and greed, like they all can do.

I always opt for a second opinion.

My first step, if I was you, would be to get an Igenex test for lyme. Make sure a quality lab that specialized in lyme detection does the testing.

If you have a lab report, I am very interesting in seeing it. If you don't, you really should keep a copy of all your labs for your own record.

Actually, there are documented cases of Lyme presenting in this way.
journals.lww.com/jaaos/Abstract/2015/11000/Lyme_Disease_Presenting_as_a_Spontaneous_Knee.4.aspx

/www.hss.edu/newsroom_knee-pain-caused-by-lyme-disease.asp

It's not the deer that are the problem, as they are just like us - unlucky enough to have ticks bite them. It's actually the white footed mouse that is giving Lyme to the ticks, so I would encourage you to promote the use of "tick tubes" www.ticktubes.com/

Or people can make their own: organicdailypost.com/make-tick-tubes/

Deer culling would actually remove the deer from the tick's feeding options, so they would be more plentiful for finding humans.

The reason it's still so controversial is because it's a very hotly debated political issue:
ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/

Yes, you should always get a print out of your labs. Doctors only tell us what THEY think is relevant. Many of us have been able to track issues from years before by looking at blood tests and other things.

I have to ask, so please forgive me, but are you sure you were reinfected and didn't relapse? Doxy is hit or miss with many people, especially when it's given for only 30 days.

You said "it had already gone to my knees" which makes me think it's a definite possibility that you have relapsed.

Again, it's NOT the deer that are our problem, as they are in the same position as people. Just unlucky enough to not have hands to pull those ticks off of themselves. It's the white footed mouse that passes the infections on to the ticks, which then go out to find a blood meal from anywhere they can, including people, pets, deer, cows, and more. Shooting the deer would only mean that the ticks would be more aggressively feeding from pets and people.

I'm not sure where you read that, but it's wrong. I live in a very rural area and we have deer in our yard all the time. It takes a 6 foot fence to protect a garden from deer, but it doesn't have to be a football field wide!

Hi Thanks again! OK, awesome I'll ask for my lab tests. Never thought of doing that. I wouldn't know how to 'read" them but I could try to learn I suppose. No, what I read is that the deer fence needs to be at least 8 feet high, not just six, or the deer could jump over it, and it must be a foot ball field AWAY from the garden you are trying to protect. That distance away. Not wide or whatever. The ticks fall off the deer to lay their thousands of eggs (they mate on the deer) and then they yes of course get the Lyme from the mice who are foraging in the woods or fields where the ticks laid the eggs. The mice, or chipmunks whose habitat is about the range of a football field could carry the ticks up to your garden and voila you have lots of deer ticks in your garden! The fence can't be close to your garden. The deer will come right up to the fence. Or at least mine will for sure!! The little b'stads! So no the deer fence is not going to work for me unfortunately. Prohibitively expensive to put it that far away from my garden!! I bought solar powered very inexpensive "predator guard" red blinking lights I found on Amazon and they have been working great to scare the deer away from my garden. The deer were of course also eating my garden to the ground but that is the least of my worries at this point not being able to walk without a cane for five months!

If this is in fact correct, that mosquitoes or flies or many other insects can carry Lyme then the situation is completely and totally hopeless. Nothing at all can be done or even attempted. We all should always stay indoors except for brief forays outside, even in the city, clothed in our hazmat suits treated with permethrin. Seriously. These diseases are no joke as we all know. I do not believe this. Nothing I have read about Lyme, and I have read a lot, has indicated that Lyme is carried by anything other than deer ticks. And that they have a two year life cycle involving deer as a critical link. How is Monhegan island in Maine explained that eradicated their deer herd and their Lyme rate plummeted? Even the Vineyard in Ma. is considering deer herd culling since their deer numbers are out of control and their Lyme rate through the roof. I realize there is an urge to "bombs away" a problem, or seeking an easy solution, but I also realize that many people have a soft spot in their heart for deer (the Bambi effect) and just cannot stomach hearing about them being killed for any reason whatsoever. I would have been like this myself many years ago. I also know there are lots of people that care more about certain animals than they do about people. I get it. But it doesn't make a lot of sense since we actually eat the critters in fancy restaurants! Is this the prevailing belief on this forum that mosquitoes and other bugs carry Lyme? Hmm. maybe I'm not a good fit.

Hi Hoping to walk!

Welcome... glad you're here.

Interesting conversation - especially your info about ticks and deer. I don't live in a "deer area" but now have a healthy dose of "get away from me". I see these videos people post of deer snuggling up to toddlers and I just cringe.

Sounds like you're seeing Dr. Alan Steere? He and some of his colleagues forming the IDSA (infectious Diseases Society of America), ALDF (American Lyme Disease Foundation), did a lot of studies early in the Lyme endemic. His early work showed that a single cenospecies or strain Bb manifested as Lyme disease by developing an Erythema Migrans (bull's eye) rash, and/or arthritis in the knee, and/or Lyme carditis (heart), and also Lyme meningitis (inflammation of cerebral membrane). But they didn't look for --or consider any other associated symptoms (this made their research more streamlined with fewer variables but certainly didn't help paint a full picture of Lyme0.

And a good deal of subsequent scientific research was then based on this early science that defined Lyme very narrowly (including a couple of Lyme vaccines and the IDSA's diagnosis and treatment guidelines). The problem is, they declared that 30 days was all that was needed to clear the rash or the swollen knee. But the other manifestations of Bb were ignored and still are with only 30 days of abx.

This narrow definition left out MANY other genospecies or strains that are all over this country. So, most of us Lymees really don't know which strains we have but we're rarely "cured" w/ 30 days of abx. The serology tests, geared around the single strain, tell us NOTHING other than which DNA parts of the Lyme microbe we might have developed antibodies to--but that's about it. As Traveler mentioned, Lyme can disrupt the immune function and can also hide from the immune system and abx, which also makes these tests and a truncated treatment protocol fairly unreliable.

In your case, sounds like you were lucky to get the initial 30 days of abx but we often tell people that this is a good start and to spend this time looking for a qualified ILADS Lyme specialists so that you can continue with appraise treatment. Steer and his IDSA pals who subscribe to this very narrow definition of Lyme don't acknowledge the other strains or the need to treat much longer than the initial 30 days.

As also mentioned, it's imperative that you also be certain you have no coinfections... this is something that the IDSA has finally acknowledged so they are now encouraging this as well. I think that's the only thing IDSA and ILADS agrees on, but the coinfections are generally simpler to identify and treat and the etiology is more straight-forward.

You sound like an avid reader - that is a GREAT (and very necessary) quality for a Lymee!

This is 6 years old but the Institute of Medicine's Lyme workshop back in 2010 had some very interesting presentations on Lyme, tick biology and burdens (not much about other vectors as transmitters but I've included a few more links below), host-vector interactions, surveillance, pathogenesis, etc... and even more info in the appendix.
www.ncbi.nlm.nih.gov/books/NBK57020/pdf/Bookshelf_NBK57020.pdf

I agree with Traveler about other hosts and vectors other than ticks, deer and mice and YES, it is a HUGE concern - not only because of the general exposure risk but because this is being denied at the top levels of science and .gov... it's unconscionable but not inexplicable.

Borrelia burgdorferi can be transmitted via sand fleas, mosquitoes, fleas and other arthropods. In clinical cases of Lyme Disease, biting flies, mosquito’s and mites are suggested to have been responsible for the infection. Borrelia has been found in: numerous species of mites, fleas, biting flies, ie: bot flies, deer flies, horse flies and mosquito’s, indicating that these insects are capable of maintaining the bacteria within the environment and are potential vectors.

These studies might not be available entirely from these links (other than the abstract) but maybe you have a way to obtain them:

Luger SW (1990) Lyme Disease Transmitted by a Biting Fly. N Engl J Med; 322(24):175 www.ncbi.nlm.nih.gov/pubmed/2342543

Herzer P, Wilske B, Preac-Mursic V, Schierz G, Schattenkirchner M and Zollner N (1986) Lyme arthritis: clinical  features, serological, and radiographic findings of cases in Germany. Klin Wochenschr ; 64(5):206-15
www.ncbi.nlm.nih.gov/pubmed/3702279

Doby JM, Chastel C, Couatarmanac'h A, Cousanca C, Chevrant-Breton J, Martin A, Legay B and Guiguen C (1985) Etiologic  and epidemiologic questions posed by erythema chronicum migrans and Lyme disease. Apropos of 4 cases at the Regional  HospitalCenter, Rennes. Bull Soc Pathol Exot Filiales;  78(4):512-25
www.ncbi.nlm.nih.gov/pubmed/4075471

Hard S (1966) Erythema chronicum migrans (Afzelii) associated with mosquito bite. Acta Dermato-Venereol;46:473-476
www.ncbi.nlm.nih.gov/pubmed/4163724

Badalian LO, Kravchuk LN,  Sergovskaia VD, Belousova VS and Minina AP (1994)  The neurological syndromes in Lyme disease in children. Zh Nevrol Psikhiatr Im S S Korsakova; 94(3):3-6  
www.ncbi.nlm.nih.gov/pubmed/7975984

Pokorny P (1989) Incidence of the spirochete Borrelia burgdorferi in arthropods (Arthropoda) and antibodies in vertebrates (Vertebrata). Cesk Epidemiol Mikrobiol Imunol; 38 (1): 52-60 www.ncbi.nlm.nih.gov/pubmed/2646031

Anderson JF and Magnarelli LA (1984) Avian and mammalian hosts for spirochete-infected ticks and insects in a Lyme  disease focus in Connecticut. Yale J Biol Med ;57(4):627-41. www.ncbi.nlm.nih.gov/pubmed/6516460

Hubalek Z, Halouzka J and Juricova Z (1998) Investigation of haematophagous arthropods for borreliae--summarized data, 1988-1996. Folia Parasitol (Praha);45(1):67-72. www.ncbi.nlm.nih.gov/pubmed/9516997

Magnarelli LA, Anderson JF and Barbour AG (1986) The etiologic agent of Lyme disease in deer flies, horse flies, and  mosquitoes. J Infect Dis 1986;154 (2) :355-8 www.ncbi.nlm.nih.gov/pubmed/2873190

Stanek G, Flamm H, Groh V, Hirschl A, Kristoferitsch W, Neumann R, Schmutzhard E  and Wewalka G (1987) Zentralbl Bakteriol Mikrobiol Hyg (A)  ;263(3):442-9
www.ncbi.nlm.nih.gov/pubmed/3591096

Magnarelli LA and Anderson JF (1988)Ticks and Biting Insects Infected with the Etiologic Agent of Lyme Disease, Borrelia burgdorferi. J Clin Microbiol: 26 (8): 1482-6 www.ncbi.nlm.nih.gov/pubmed/3170711

Halouzka J, Wilske B, Stunzner D, Sanogo YO Hubalek (1999) Isolation of Borrelia afzelli from Overwintering Culex pipiens  Biotype molestus Mosquitoes. 1999  Infection;27(4-5):275-7 www.ncbi.nlm.nih.gov/pubmed/10885843

Zakovska A, Capkova L, Sery O, Halouzka J and Dendis M (2006) Isolation of Borrelia afzelli from overwintering Culex  pipiens biotype molestus mosquitoes. Ann Agric Environ Med; 13 (2): 345-348  
www.ncbi.nlm.nih.gov/pubmed/17199258

Kosik-Bogacka DI, Juzna-Grygiel W and Jaborowska M (2007) Ticks and mosquitoes as vectors of Borrelia burgdorferi sl in the forested areas of Szczecin.  Folia Biol (Krakow): 55(3-4): 143-6
www.ncbi.nlm.nih.gov/pubmed/18274258

Hope this wasn't too much info!!

-p

Actually, birds DO get Lyme disease: "Lyme disease spirochetes were detected in 57 of the 100 birds that carried ticks. Among the ticks themselves, 13 percent of the larvae and nearly 25 percent of the nymphs were infected with B. burgdorferi or related spirochetes.

Among the 23 species of birds that were infected, the study authors highlighted the lesser goldfinch, oak titmouse and dark-eyed junco as birds that harbored more subtypes of Lyme disease bacteria than others. In addition, the golden-crowned sparrow was infected more frequently than other species.

Previous studies that tested birds have identified the dark-eyed junco as a likely source of Lyme disease bacteria for ticks that feed on them.

Perhaps one of the most surprising results of this study is that “another species of Lyme disease spirochete closely related to, but distinct from, Borrelia burgdorferi was detected in birds for the first time anywhere in the world,” said study co-author Robert Lane, a medical entomologist and UC Berkeley Professor of the Graduate School, and a leading expert on ticks and Lyme disease.

That spirochete, named Borrelia bissettii, has been known to cause a Lyme disease-like illness in people in central and southern Europe. Furthermore, this bacterium was the most common of the Borrelia species found in birds."

news.berkeley.edu/2015/02/25/birds-lyme-disease-bacteria/

And many other articles with the same news:
/goo.gl/jlRj0R
"Study of African birds reveals hotbed of malaria parasite diversity"

www.scirp.org/Journal/PaperInformation.aspx?Paperid=56734
Infection Prevalence of Borrelia burgdorferi in Ticks Collected from Songbirds in Far-Western Canada

www.eurekalert.org/pub_releases/2015-10/asfm-pnt093015.php
Pathogen-carrying neotropical ticks ride migratory birds into US