posted
Hello. I'm new here, looking for some guidance. I'll try to make it short... well, as short as I can! I have had chronic inflammation and pain in my right elbow for over 2 years - pretty much all the time.
My right shoulder also has some pain, which developed later. I've been to all kinds of doctors and alternative practitioners, with zero relief.
I started with a diagnosis of tennis elbow, then they added radial tunnel syndrome, but it never really fit either of those completely. I finally had surgery on the elbow this June to reconstruct the ligament, fix the tendon, etc.
The surgeon did acknowledge that there was an underlying root cause for the inflammation. They also did a biopsy, which was showed "unspecified inflammation."
The surgeon and the rheumatologist I saw recently think it might be rheumatoid arthritis, although it doesn't really fit that picture either. She wants to try methotrexate, which doesn't sound good to me, esp. when she isn't sure of the diagnosis.
To further complicate matters, I DID have lyme one year ago (a long time after the elbow pain started.) I had 2 bullseyes, all over joint and muscle pain, low fever, etc.
I was treated with doxy for 1 week, but couldn't take the dizziness and pressure in my head, so the dr. put me on 3 weeks of amoxicillin. I had had at least two negative lyme tests - including one when I had the rash.
Subsequent lyme tests were positive after treatment, but my dr. thought that was to be expected. Now I just saw her - my pcp - yesterday.
She wants to use a different test for lyme and coinfections - a vector test, I think. This could have been avoided, if the surgeon had had my tissue sample cultured for lyme!!!!!!
Anyway, at this point, I have so much pain, can't sleep, and don't know which doctor to listen to, which treatment to try next. Other info: I do have hypothyroidism and adrenal fatigue;
I'm 44, was healthy and fit before all this. Also, my elbow is swollen and warm to touch with reduced range of motion, I also lost about 40% of my cartilage, according to the surgeon.
Please help! Does this sound like I could have had lyme before the infection a year ago? And that lyme is causing my problem? Thank you!!!
[ 10-03-2013, 07:00 PM: Message edited by: Lymetoo ]
Posts: 5 | From Northeast PA | Registered: Oct 2013
| IP: Logged |
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
| IP: Logged |
posted
Four weeks of antibiotics will not "cure" Lyme. On top of that, you were probably not given a high enough dosage.
Early tests (first 6 wks) will almost ALWAYS show negative. The BULLSEYE rashes are diagnostic in and of themselves.
When your other tests came back positive, SOMEONE should have stepped up to the plate. But NO, we are in a political mess when we have Lyme disease. No one wants to treat us.
posted
You do not need any more Lyme testing! You need to see an LLMD and you can post in Seeking a Doctor. In the heading, you can put the initials of any state that you're willing to travel to.
When we go on thyroid med, we do better. That's one of the treatments the doctor will explore with you.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Thanks, everyone. I should clarify a couple of things. I had the lyme AFTER the elbow problems started - does that mean you think I already had lyme and just got a second infection by another tick bite? (I do live in the woods, btw.) This is what really puzzles me, so if anyone has an opinion on this, I'd like to hear it. ALso, most sources seem to say that joint problems in lyme come and go and move around to different joints. Have any of you experienced this chronic problem in one joint for a long time, constantly?
I am taking thyroid meds - natural dessicated thyroid, but I've had to drastically decrease my dose because my t4 seems to be pooling, probably due to my low cortisol. I just can't seem to break the cycle.
I will look for an LLMD, thanks. The rest of these doctors don't seem to know what they are talking about. thanks, all!
Posts: 5 | From Northeast PA | Registered: Oct 2013
| IP: Logged |
posted
It's hard to say about WHEN you got it. I suspect you already had it before you got the bullseyes. I've heard that one LLMD says he thinks when a bullseye shows up it's really the second time the person has been infected.
But at any rate, you need REAL HELP!! Choose your doctor carefully! Get recommendations.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I'm sorry for your pain. I have tennis elbow (not a raquet in site) right now, and it really cramps your style. Whether its Lyme or overuse it truly is painful.
From just a practical note. Since your pcp seems to be open, I certainly think it safer to do a longer trial if antibiotics before you try something like methotrexate. If you have Lyme you will likely know it within a week, cause you will Herx and feel worse as the spirochetes die.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You may be interested in PEMF, pulsed electromagnetic frequency therapy, to treat your painful joints.
I treated my continuously painful knee with a SOTA Magnetic Pulser. This little machine makes pulses of magnetic energy. You lay the handpiece on the skin, and it delivers a pulse about every five seconds.
I treated my knee for 20 minutes, several times per day, and the pain improved. After a couple weeks, my knee was so good that I was forgetting treatments.
Now, more than five years later, I still have no pain in that knee.
Magnetic energy adjusts the electrical charges on the cells, so that nutrients can enter and waste products can exit easier. The mitochondria in the cells get what they need to make energy, and the cells work better. This reduces pain and inflammation, and the joint heals.
I have used the Magnetic Pulser on any area I've had pain, with good results. Low back, sacroiliac joints, hip joints Kidneys Toothache, inflamed saliva gland, sore throat Sore shoulders, stiff neck Abdominal pain, nausea Hemorrhoids!
I get esophageal spasms, and this device provides instant relief.
The price has increased since I bought mine, which makes me sad. I know it's a business and the manufacturer needs to be profitable, but the price will keep many people from trying it.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
As mentioned above, I would definitely get in to see a LLMD. You can get referrals in the "Seeking a Doctor" forum here.
Sadly, you were not treated long enough for Lyme. That is the IDSA recommended amount of time, but for those of us that have succeeded in getting our life back, we went to the TRUE specialists that use the ILADS guidelines.
Before my lyme diagnosis, I was actually tested for R.A. and even had it come back POSITIVE, even though the Rheumotologist said my case wasn't really like the ones he had seen in the past.
Lyme goes after every organ and part of our body out there which is why so many of us have many different symptoms. I thought my entire body was falling apart between pain, tremors, and then it REALLY got nasty.
But I can say that with long term aggressive treatment (for me, it was 5 1/2 years, although it can be longer or shorter depending on the individual), but treating until symptoms are gone, really did get my life back to normal.
If I hadn't lived this nightmare first hand, I wouldn't have known lyme could cause soooo many crazy things and what you are mentioning definitely fits in the category.
Please see a SPECIALIST and start getting your life back. It is soooo worth it.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Do you have any other symptoms? Headaches, air hunger (can't get a deep breath and feel you need oxygen), muscle twitching, profound fatigue, inability to concentrate, insomnia, oversleeping, muscle aching, cramps. . . . . ?
There are a slew of infections you can get from one tick bite. It is very uncommon not to be infected with more than one pathogen. A good LLMD can figure out what is causing your pain. You may have been bitten before and just didn't know it.
There is also the possibility you have Protomyxzoa Rheumatica, which causes Rheumatoid Arthritis (hence the last name). It also causes auto immune diseases. My thyroid went hyper when the PR took over.
Borellia is known to migrate and babesia affects both sides of the body. Protomyxzoa will affect one joint. For me it was my right knee and my left ankle, sometimes my right elbow. Do you ever get stabbing pain , like it is hitting the nerves? That is PR.
PR can also give you intermittant nasal congestion and a horse voice. It causes insomnia.
The fact is you can have every single one of the infections I have mentioned so you do need to see a good LLMD.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
I'm here! I think one of my posts went astray, though! Thanks, again, everyone. nefferdun, I will look into protomyxzoa more - I do have a lot of those symptoms! Trouble sleeping, due to pain, which I think is really the cause of my inability to concentrate and my fatigue (in addition to thyroid and adrenal issues), nasal congestion pretty much all year round and a sometimes ho**** voice. Of course, we also have a mold problem in our house which could cause those - and make lyme and any other infection worse, I know! I wish I could just walk away from the house, but that just isn't feasible right now. I do get stabbing pains sometimes, too.
I looked into some LLMD's in the area, so I will be trying to make an appt. soon. However, I'm trying to do some natural things on my own now, too, to see if they help. I'm thinking of doing a parasite cleanse, I'm already on an anti-inflammatory diet, but it doesn't seem to be helping. I'm going to try an infrared sauna on Wed to see how that goes. I really want to tray LDN, but so far no one will prescribe it. I may have to order on my own. And we are trying to control the mold somewhat, but it is really everywhere.
Thanks again!
Posts: 5 | From Northeast PA | Registered: Oct 2013
| IP: Logged |
posted
Meredith.. you can always look for threads you have started or posted on by clicking on your profile.
You can also go to page 2, 3, 4, to find older threads that drop off the page.
(see the top and lower right of this page)
Glad to see you found this again!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Also when you post, click on "full reply form," and then check "Email Notification: emails sent to you whenever someone replies."
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
posted
Thanks, Carol and Lymetoo! That helps!
Posts: 5 | From Northeast PA | Registered: Oct 2013
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
My situation is similar. My Rheumy feels I am dealing with Ankylosing spondylitis or Psoriatic arthritis and is pushing enbrel. I was diagnosed with Lyme about 2 years ago and spent a little over a year on antibiotics. At this point I am trying low dose naltrexone. It's very hard to know who is right..
Posts: 1750 | From United States | Registered: Dec 2011
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, boy, don't go near the Methotrexate or Enbrel!!
Sadly, I consulted with the parents of a 3 year-old, who has been on both, plus prednisone, for years already (after a tick bite and no treatment). Horrifying!!
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I had the lyme AFTER the elbow problems started"
I had bad hip pain for 6 months before I got infected with Lyme (I got the bulls-eye rash while I was in physical therapy, and thank God the PT recognized the rash and urged me to see the doc ASAP). What Lyme did was make it practically impossible for the ligament to heal.
Lyme takes whatever is going in your body and amplifies it. Anything that you had prior to infection seems to take longer to heal once you get Lyme.
"Have any of you experienced this chronic problem in one joint for a long time, constantly?"
Yes. My wrist is also bad (been in pain for 5 years prior to Lyme).
All this got worse when I had Lyme. It finally started to heal correctly about 8 months after antibiotic treatment.
I just got reinfected a month and a half ago.
I started antibiotics a few days. I just herxed to today and guess what my symptoms were??? The pain in my hip and wrist came back.
Yes, the pain can just linger in the same joints.
By the way, the first time around when I had Lyme I had to treat with antibiotics for 6 months to get rid of it and this was starting while I still have the bulls-eye rash. The IDSA guidelines are completely wrong.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic