posted
I've got swelling in my joints and pain and soreness around joints, tendons, ligaments, etc.
I have had lyme for 6 months now, maybe a little more. I'd like to know what most people's experience is that have joint problems.
At what point does the joint pain "peak out"? Or does it ever peak out. Maybe it just progressively gets worse and worse until I'm completely crippled.
I've read accounts on here of people who's joint pain either got better or stabalized at some point. What should I expect in terms of a timeline? How long does it typically take joints to get better if they are going to?
I know some of these questions are sort of unanswerable hypethetic questions and that everyones experience is different and it's impossible to answer accurately.
Still, if you've had any experience with lyme related joint problems I'd love to hear your story on how it progressed, how far it progressed, or how long it took to get better.
Thank you!
WG
Posts: 92 | From Georgia | Registered: Aug 2010
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posted
WG, Im so glad you posted this question. I suffer so badly with joint pain. Newly diagnosed with lyme, but since i've had it for five years(at least) without treatment, I wonder what the medical outlook is for improvement of arthritic pain. Also I have a burning sensation on my skin and throughout my body as well...wonder if that will also improve as i get further into treatment. Praying for you and looking forward to reading the responses on this.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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posted
I've been able to stop joint swelling and pain with antibiotics - the one that works for me is oral clindamycin.
I did 150mg every 6 hours when I started it, symptoms were gone in a week's time, I herxed after a month, then dropped back to 150mg 1-2x/day.
We're all different when it comes to which meds will work for us. It may take some experimenting.
How I knew I could take clinda - I had had a finger infection three months before I found out I had Lyme. I tried five abx before finding I could tolerate clinda.
So basically, I had done my experimenting prior. That's what I mean about finding the drug(s) that will work.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
That's interesting Robin, about your experience with clindamycin. Minocin and clindamycin are the two antibiotics prescribed for arthrits and other autoimmune diseases in AP therapy. Check out www.roadback.org. It's a website for those suffering with autoimmune diseases.
My lyme symptoms started with knee pain and stiffness, and a swollen left ankle. It came on suddenly, and I went from being active, to having to push myself out of a chair with my arms. I couldn't stand for very long.
A little over a year later, I am 75% better with babesia/lyme treatment.
Posts: 964 | From san diego | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not just "when to suspect lyme" but also the range of what to expect from lyme (if left untreated or under treated): --------------------
swollen joints developed very late for me - I was bit in 1981, didn't get swollen joints until 2005, after I was exposed to chemicals from a fire. So, maybe a last-straw stressor kind of thing.
Which is a different onset pattern from those of you who start with a joint problem.
Then the swelling got worse and worse and I finally knew something was up, besides my having to put my legs up in the air! Found out in 2006 I had Lyme.
Yes, I still take it - 1-2x/day. If I don't, the joint swelling starts again.
Clindamycin clears up fibromyalgia pain and swollen joints - knees and ankles.
Interesting to read that clinda is mentioned on the medical site as helpful for arthritis/autoimmune conditions.
We're all different when it comes to meds - I'm fully aware it's trial and error - if anyone else tries clindamycin and it works, be sure and tell us!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I'm still on IV clindamycin for seven days/monthly, along with all the other abx.
Robin, you mentioned that clindamycin clears up fibromyalgia pain. Before my diagnosis, I went to a rheumatologist and said that the pain in my knees goes away when I'm on antibiotics. She said, "I have fibro patients that come in with a UTI, and when prescribed antibiotics, they tell me their shoulder pain resolves". Duh...no kidding! Unfortunately traditional doctors don't get the connection....
Posts: 964 | From san diego | Registered: Oct 2009
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It seems like "lyme arthritis" is basically identical to rheumatoid arthritis according to this information http://www.similima.com/pm40.htmlPosts: 92 | From Georgia | Registered: Aug 2010
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posted
nspiker, I can't remember if I asked you why you're doing IV clindamycin instead of oral.
I wonder why the discrepancy in timing of swollen joints. My sense is it's usually an initial symptom, whereas mine was towards the end, just before I got diagnosed. My first symptoms were stiff neck and fibro.
Posts: 13116 | From San Francisco | Registered: May 2006
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I think it's different for everyone with lyme.
My son had a 5 day flu like onset... followed by a week of feeling OK but not great... followed by another flu-like 3 days...
He started saying his knees hurt... then his ankles...
When I took him to the doctor's I asked for a lyme test and a sed test for rheumatic fever.
28 days of amoxy... still throwing up, stabbing headaches, migrating joint pain, bottom of feet pain, swollen joints, unable to sleep.
By the time we went back to the doctor, I was saying he still had lyme, they wrote in his chart, "normal gout"
They prescribed prednisone.
It was a downhill slide from there. That's where the neuro symptoms started. Still have joint pain and swelling...
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Joint pain was my first symptom, and at first I just had pain in the one knee. Figured it was from sports, or dance or something.
When it didn't go away, they tested me for RA, ended up diagnosing me with Fibro. Then CFS, MS, you know the drill.
The joint pain just kept getting worse until I finally got dxed with Lyme. Got better with IV treatment.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
Robin I too have had suffered imensely w/burning skin pain. Driven me insane along with my many other symptoms.
2 weeks ago had appt. w/LD and he told me to up my ALA to 600 per day. Within one week the burning pain is all but gone.
Also restarted plaquenil w/my ceftin/biaxin but I definitely put this down to the ALA
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
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posted
Jola, I've got some Alpha Lipoic Acid. I don't take it every day though. Do you space it away from the abx? Is there anything you know of that should be avoided with ALA?
WG
Posts: 92 | From Georgia | Registered: Aug 2010
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I'm sitting here concerned about the very same thing, my currently progressing joint pain. And very glad my next LLMD appointment is Monday.
My initial symptoms were classic, with the flu that wouldn't go away, followed by horrible night sweats, severe neck pain, and one intense migraine that lasted 9 months and 3 days.
No drugs would touch that migraine, not till I was treated for Babesia.
I also had minimal tingling, mild migratory joint pain, severe anxiety and significant brain fog in the beginning.
But now 2-3 months after Babesia treatment stopped, my joints are going insane. I feel like they are all joining together to deteriorate at the same time.
Ankles, elbows, wrists, hips, toes/feet, fingers/hands, shoulder and back.
I am currently being treated for Lyme and Bartonella. Now the Bart treatment seems to have cut out the pain in the soles of my feet but my joints...
I came down with initial symptoms in Aug/Sep of 2009. Diagnosed with Lyme only in October 2009 with a positive WB. Spent the next 6 months chasing the wind because I didn't get well.
Found LLMD in April of 2010. Diagnosed with Lyme, Babesia and Bartonella. Lyme and Babesia tests positive, Bartonella based on clinical symptoms.
Still, Awake
Posts: 6 | From Little House in the Big Woods | Registered: Dec 2010
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posted
Momlyme- Is your son still on prednisone? I was on prednisone for 6 months before I got my Lyme diagnosis. It all but shut my body down, and could have killed me had I not gotten off it. It is VERY dangerous w/Lyme disease. My LLMD said prednisone is "like putting gasoline on a fire when it comes to Lyme." You might already know this, but if not, your son needs to get off it ASAP. Although you do have to wean off.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
quote:Originally posted by searching4truth: Momlyme- Is your son still on prednisone? I was on prednisone for 6 months before I got my Lyme diagnosis. It all but shut my body down, and could have killed me had I not gotten off it. It is VERY dangerous w/Lyme disease. My LLMD said prednisone is "like putting gasoline on a fire when it comes to Lyme." You might already know this, but if not, your son needs to get off it ASAP. Although you do have to wean off.
No... it was either 7 or 10 days... after the original 28 days of amoxy didn't make him better. He went back into his peds GP and she said she was going to prescribe prednisone for the joint swelling. (they wrote in his chart: "normal gout")
I did not know then what I know now.
It made the lyme go deeper, shut down his immune system and did some major damage which we are still trying to recover from.
I have read since that steroids like prednisone stay in the system for 6 months to a year. Sad that doctors will prescribe prednisone and say anything just to not admit that lyme disease persists past the 28 day IDSA magic number.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Momlyme, I am sure it is so infuriating for you. What I want to know is since when is gout "normal" for a child?
I am in the same condition from prednisone. I can only imagine how much more difficult it would be if it were one of my children.
I still cannot believe how quickly and easily the doctors hand out prednisone, which is SO dangerous, but they are so resistant to giving us antibiotics, which can get us healthy.
I will pray for you and your son...
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Prayers for you too searching4truth! I am sorry this happened to you too.
>>How long ago did you take prednisone?
My LLMD said the same thing about since when is gout "normal" for a child? It's not. You and I know that... the people who have gotten this far and have learned to advocate for themselves and their children know better.
Unfortunately, doctor's hand out steroids and pshych meds like they are candy. I saw a commercial for some gout meds the other day. I think it was called urich. Probably to make millions and cover up more TBIs.
It is much more profitable to cover up symptoms than to heal the patient.
I am sure our regular doctor has been trained that after 28 days lyme is not the cause of arthritis or joint swelling... so they have to write down something. 'normal gout' - it's laughable if it were funny and not life threatening.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
I was on prednisone for over 6 months. Sometimes up to 50mg a day. And I was on methotrexate, a chemotherapy drug. I was diagnosed with psoriatic arthritis, but only because there is not test for it, so no way for the doctor to rule it out.
At one point, someone mentioned Lyme, and I asked my doctor, he got very angry, slammed his fists on the table, and yelled at me that it was impossible, and basically, how dare I mention it to him?! Well, I got my Lyme diagnosis 3 months later. But at that point, the drugs had almost shut my body down entirely. My husband and I thought I was going to die. I am doing a little bit better now (3 1/2 months later)
The messed up thing was that he was trying to put me on the next level of medication because I was getting worse while on the other 2 drugs. The medication is about $2000 a month and I have no insurance. He filled out a piece of paper in just a minute or two, and I was to receive the drug for free. This drug would have most likely killed me. And I can get it for free. But I had to search and search for a doctor to give me antibiotics to get me healthy which ended up costing about $20 a month!
If I didn't have such bad brainfog, I would work for patient advocacy. It angers me. Especially to hear of it happening to children.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I am in tears... that is awful and that doctor should have his license revoked.
I know what you mean on the patient advocacy... I have thought of the same thing. Either that or an education center/ detox center.
I like my ND's office. Peaceful and no pressure.
I definitely think when I get my family well I will work to get others well... or at least educate them on what is really out there!
I know so many people who are being turned away by their doctors and told that it can't possibly be lyme so they won't even order the test!
They can get shots of steroids and depression medication... but not abx!
Despicable!
The question here is what is the typical progression of lyme arthritis.
I am currently reading "Cure Unknown" and my take away so far is there is no typical in Lyme diagnosis. That is why it is often misdiagnosed.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Sorry to have hijacked this post... and back to the question, I agree that there is no "typical" when it comes to Lyme. I do know that it can resemble Rheumatiod arthritis, Psoriatic arthritis, and gout. So I imagine Lyme arthritis must sometimes follow the progression of these ones.
I have not heard of people becoming permanently crippled like you do with the autoimmune diseases. Most people I have talked to who have gotten better also improved with their arthritis.
With my arthritis, it started as an autoimmune diagnosis, which as I said, we learned was Lyme. Now, my LLMD said he does not know if I only ever was dealing with Lyme, or if the Lyme is causing an autoimmune disease as well. It is very possible. So I think it really depends on if you are dealing with Lyme arthritis alone, or if it has morphed into an autoimmune disease like rheumatoid arthritis. I think the latter would be much more devastating to your joints, having much more permanent arthritis.
I am not sure if this post came out clear, as I am kinda foggy. I hope it makes sense.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Doesn't want me to change med's right now though because I have only done 2 months of Rifampin and if we stop it and I need to go back on it my body might refuse it.
LLMD wants me to hang in there till the end of the month so I can do an EAV test. Anyone heard of that?
The doc explained it to me but I can't explain it. Doc is concerned about allergies, yeast, and a whole host of other possibilities.
As much as I suffer, my gut tells me to hang in there as this doc is the first person to really help me.
After the test the doc thinks they will be better guided on how to proceed.
Still, Awake
Posts: 6 | From Little House in the Big Woods | Registered: Dec 2010
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posted
I have learned a key word lately from my LLMD.. TRIGGERS. I am allergic to Sulfa and she told me to stay away from eggs or sulfites at this time. Food allergies can make your body flare...PREDNISONE is a no-no for us Lymey's!There is something that is trigging the Rheumatiod and Reactive arthritis in our bodies. We may have the gene but that does not mean it will ever flare unless something triggers it., ie..Lyme/bacteria/viral/parasite. I was in such bad pain in knees/elbow/feet/hands and in wheelchair when i saw her last week and am doing better now. She is also a reumatologist as well..And unbelievable in her skill to treat. Homepathic's and building your immune system is KEY!!We cannot attack the Lyme if we are badly inflammed and it is definately a balancing act. Dont wait to long if your joints are getting worse...find another doctor that really knows what they are doing if your joints are getting worse. Some say they treat Lyme but that does not mean they know how to treat the whole person.
We must stay postive and encouraged and as my doctor just shared with me...We must forgive ourselves forgive ourselves for being sick. It is not our faults and we did not chose to get sick. Please keep a positive attitude and keep FIGHTING!! God Bless you and keep you!
Posts: 2 | From SouthEast | Registered: Sep 2010
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My cousin had lyme--joints so bad she was in a wheelchair 18 months after bite and diagnosis. With treatment she recovered.
I likely contracted it 20 years ago, had the stiff neck and flu-like illness. I don't recall if other joints bothered me at that time. I was not diagnosed with lyme.
About two years after that people began commenting that I was "always tense." I've never been able to relax my neck and shoulders. Ever. Period. It spread to my upper back. Massage therapists don't like to work on me.
Four years later I was diagnosed with arthritis, due to chronic pain in my knees.
When it began to affect my wrists six years ago I got some weird type of tendonitis diagnosis and was supposed to go to physical therapy. It was agony.
So no wheelchair for me, but most of my joints bother me. My wrists especially are always on fire. Hoping treatment will reverse it all.
I'll let you know.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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