posted
The story of Brooke the probably undiagnosed Lymie addicted to pain killers.
Her doctors do not believe in her positive Lyme test results nor does she.
I saw the show before. I wrote to her pain management doctor to tell him maybe they should pay attention to her positive Lyme test results and I received no answer.
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Angela,
The story of Brooke....?
Should anyone know her around here?
What do you mean by "PROBABLY UNDIAGNOSED" lymie addicted to pain killers.
I would be interested in hearing her story, Is there a place on lymenet where I can search for her story?
I did'nt see her story cuz I was watching something else on the tube. I was'nt here earlier to catch your post to watch it tonight.
I am interested however....anymore of her story around here?
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Angelica
Unregistered
posted
Brooke is the subject of the intervention tonight on A&E. She is addicted to pain pills. She has arthritis pain and has had a positive Lyme test but her doctors do not believe she has Lyme disease nor does she so she is not treated for LD.
The show ends with a pain management doctor saying she has "real pain" and she goes off to a clinic to learn to manage her pain with "better drugs" if I recall correctly.
I bet they might have something about the show on A&E's website.
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``Brooke, 26, was a beautiful teenager with a magnetic personality. An elite gymnast on the cheerleading squad, she looked forward to a successful and athletic life.
But tragedy struck in her senior year when she was crippled by Still's disease, an early form of rheumatoid arthritis.
Her doctors prescribed narcotics to ease her pain, but Brooke soon became addicted. Her heartbroken family has sought new treatments to help Brooke, but she denies she's an addict. Now her family has turned in desperation to their last hope--an intervention.''
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posted
I just watched it. I was thinking all the time,sounds like lyme to me. And sure enough thats what it is. They focused more on the addiction than the lyme. The Dad did say something about you can cure lyme like it would be so easy. I hated the way the family treated her. Then they had this big awakening at the intervention as now we know how much pain she is in. I wonder how it's really turning out. They did say she had knee surgery. Would sure love to talk to her. It was very sad.I could really relate.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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Angelica
Unregistered
posted
The first time I viewed this show they had not treated her for Lyme disease nor did it appear they would.
Now they say she has been treated for Lyme disease.
I hope they treated her long enough. I hope they gave her more then three weeks of Doxy but after the bad guidance she received from her first doctors it makes you wonder.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
You can't really depend on the mainstream media to have any sense of reality... especially when it comes to issues dealing with health.
It's all controlled by the drug industry. They want people to be ill & misinformed since they make money off of it.
Most countries do not allow commercials for prescription drugs on TV. Since they spend big bucks advertising, they adjust the content to comply with the advertisers.
There are alot of other reasons why there is so much Lyme disinformation...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I just watched the youtube episodes Angelica posted. Very tragic. She went to rehab last fall for three months, so I guess no one knows what's going on with her now?
I think Lyme patients need to do a Lyme intervention on her behalf and how could this be done? We would need to know her last name, to try to reach her family in Tulsa, Oklahoma.
There is a Lyme support group listed that meets in Tulsa, with a contact person who could maybe help with the contact effort.
She has an obvious case of Lyme disease and needs decent treatment for it.
Posts: 13116 | From San Francisco | Registered: May 2006
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Angelica
Unregistered
posted
Robin read my post above. The latest showing tonight's said at the end she has now been treated for Lyme disease. We just don't know how by who or for how long.
I felt the same way you did when I first viewed the show and they did not have her treated for Lyme disease.
After viewing the first show I found the company Dr. Rand works for her pain management doctor and I sent him an email saying I thought she had Lyme disease and needed treatment.
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posted
Hi Angelica - was the show that was on tonight different than the part 5 episode on youtube? Since the part 5 ends with the statement that her doctors do not agree on her diagnosis.
Posts: 13116 | From San Francisco | Registered: May 2006
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What I did during Lymenet vacation time: I called the Bay Recovery Centers in San Diego, where Brook was "treated", whatever that means, to discuss recognition/treatment of Lyme disease and coinfections.
I've been to a couple pain centers. They can't do anything for Lyme patients' pain unless the infection gets recognized for what it is and treated. I was completely missed. And I imagine most are.
Numbers: 858-274-6633. 858-490-3460. 1-800-375-7263.
Posts: 13116 | From San Francisco | Registered: May 2006
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Angelica
Unregistered
posted
Robin this last showing ended differently then the first time I watched it months ago on A&E. I have not watched in on youtube.
At the very end of this show it said she had now been treated for Lyme disease. I still would like to know by who how and for how long. I hope she was not treated by a infectious disease duck.
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posted
Robin, I live in Tulsa and there is a support group in Oklahoma but it is not in Tulsa, it's in OK City. It rarely meets in Tulsa and is not very active. They rotate around between about three cities and I think it's been almost a year since there was a meeting in Tulsa. I wish there were more people here. I only know one other person that has Lyme that lives in this city and she is very ill and housebound and has parkinson's. I am sure there are more but I don't know of them. I saw Brookes story the first time and it broke my heart. And after it was originally on the A&E Intervention, the message boards went crazy with postings and her sister actually came on there and posted. If you recall, during the show, her sister was not very compassionate about Brooke and she still wasn't on the boards. I believe the closed the board on Brooke. I am wondering where the poor girl is now.
Posts: 44 | From Oklahoma | Registered: Aug 2007
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posted
kiwi........Which board did her sister post on??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Kiwikid, this is off the subject, but I notice you are from OK. Would you be interested in helping on OklahomaLyme? Email me if you are at [email protected] Phyllis
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Angelica
Unregistered
posted
There was obviously a lot of family dysfunction going on in Brooke's family.
My sister never knew what I had (I was sick yet undiagnosed for years) and we have not spoken since I was diagnosed so she still may not know.
She was the opposite of compassionate like Brooke's sister. She actually seemed jealous at times that I was ill and treated me beyond badly. I do not think she does well with other people's illnesses. She had a hard time dealing with reality when both my parents were dying of cancer at different times.
It is really sad sometimes how siblings react to a sibling who is ill.
I do hope Brooke is receiving some sort of Lyme treatment that is helping.
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posted
Dysfunctional family b/c they like so many are caught up in the stigma of painkillers and welcome to the fashionable "intervention".
It is very upsetting to me to see this woman get so much negative pressure against her using painkillers.
They ignore a positive Lyme test? My god. I thought it was bad enough to misinterpret false negatives.
This is even more evidence that medicine isn't practiced with absolute medical knowledge and logic.
Medicine is FASHIONABLE?! A positive test for illness is ignored so a more fashionable Dx can be observed and treated instead?!?
The fact that the medical "professional" is chosing to do this rules out any possibility that the two problems are linked. One causes the other! DOing the easy, simple thing that the Dr knows everyone will probably agree with. PAIN DRUGS ARE BAD! ALWAYS! NO QUESTION!
The truth is, she should have been given aggressive treatment while she was taking these painkillers from the beginning! She might have been "cured" already or BEFORE she became addicted!
Also, if they try to take her off painkillers now, it will be next to impossible. They need to wait 'till she's cured because she's ADDICTED AND KNOWS THE RELIEF PAINKILLERS BRING.
Therefore, it's not just an addiction. It's also knowing what will make you feel better and live better.
This person WILL NOT LIVE BETTER w/o painkillers!
She will undoubtedly be less functional due to the pain. Even if she became UN-DEPENDENT ON painkillers. SHE WOULD NOT FEEL BETTER!!!!!!!
She'll still be sick for god sake!
eg: I've been taking valium for my outrageous panic, anxiety, nerves. My slick, intelligent PCP told me my symptoms were CAUSED by the Valium!--Why would I even start taking it if I weren't already with terrible panic, anxiety? The simple reason is always the answer with them.
Remember Dr's are just people who don't really care about anything except not being sued and getting thru the day. If I had my own script capabilities I wouldn't almost never need a Dr.!
Why go to a Dr if they're just gonna tell you to take something you can buy over the counter?
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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No mention of Lyme on here. Maybe she didn't end up getting treated. I am a big fan of Intervention, and I saw this episode before I got diagnosed, but when I suspected I had Lyme. Her story really hit home for me.
Posts: 55 | From New York | Registered: Nov 2008
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posted
Oh good I just posted about this earlier. Glad I am not the only one who saw this. Broke my heart and wondering how many others will end up like this from the often unbearable pain from this disease. So everyone already apparently did everything that I was thinking about doing...good job guys! But no one heard anything from her? I wish we could get in touch with her directly and bypass her family all together. How sad that they think she is a drug addict and not sick with a very serious disease.
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
I am doing my best to reply to all the comments on my blog (and I will) To answer one of your questions it was decided in the end that I did not have Lyme disease but instead rheumatoid arthritis. If you have not already seen them I filmed a couple follow up videos with bay recovery www.bayrecovery.com/videos.html thank you all for your kind words - Brooke
Posts: 5 | From Oklahoma | Registered: Mar 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi brooke,
welcome to the board!!
I know many of us would want you to know that many people who have lyme have been misdiagnosed with illnesses like rheumatoid arthritis.
Did you ever have a western blot from Igenex lab in CA? Have you properly had lyme ruled out by an ILADS trained Lyme literate MD?
I ask these things, not to be nosy, but purely out of concern.
Most of us on this site were initially diagnosed with illnesses other than lyme. I was misdiagnosed for 21 years.
Even my LLMD says that illnesses like RA likely have an infectious cause, and that is exactly what lyme is.....a bacterial infection.
99% of Dr's do not know how to recognize, diagnose or treat lyme. So it is very likely that Dr's that you have seen, do not know how to really diagnose it either.
Please come back here and keep posting.
You can go over to the "Medical Questions" board and post. There are so many caring and knowledgable people here.
I am telling you all this because we care.
Keep in touch.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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So happy you decided to post here - like I said, your Intervention had a big impact on me! I watch Intervention all the time, but this was truly a special episode.
I think most people here know what its like to be suddenly stricken with pain out of nowhere. How isolating and horrible it can be. I had what was sort of like an "Ah ha" moment watching your episode. I saw myself in you so clearly. I think it was very brave of you to put yourself otu there for other people to see.
I'm sure many people will give you advice about getting further testing and treatment for Lyme. It may seem overwhelming at first since you already have a diagnosis, but I would at least look into it. If you ever had positive Lyme tests, chances are you weren't given enough meds to eradicate it completely.
Thanks for posting here! This is a great community if you do end up pursuing Lyme treatment...
Posts: 55 | From New York | Registered: Nov 2008
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posted
Hi Brooke, That is my oldest daughter's name and I am a twin also! So happy you found us. I missed the beginning of the episode last night and when I saw the pain and symptoms that you were experiencing my only thought was Lyme. All the symptoms match. So sorry for all your suffering. Please get a second opinion there is a lyme literate medical doctor not to far from you. Can someone please send her the information? Best of luck and I will keep you in my thoughts and prayers.
I did have a western blot test done and the results were negative. If you do not mind me asking Dekrator what were you misdiagnosed with? All in all I cannot complain as my quality of life now is a thousand times better than it was before Dr Rand treated me
Posts: 5 | From Oklahoma | Registered: Mar 2009
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bettyg
Unregistered
posted
angela,
could you copy brooke's post and put in your TOP POST so folks are sure to read brooke's reply to all the emails she is getting?
just edit, by clicking on pencil to add her comments after yours at the top. thank you!!
i sent brooke my welcome note and suggested she start her OWN thread here and she could answer posts here without repeating the same answers over & over to those emailing her. this way she will RECEIVE PERSONALLY all these as they come in.
we'll see what happens; how nice someone alerted her to lymenet and this specific post!
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posted
Brooke.. Have you been to www.roadback.org ?? It's a site where people with RA are brought back to good health by taking low dose antibiotics.
Check it out!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi Brooke,
So glad you are doing better with Dr. Rand. I am sure everyone here including myself will want to reach out to you.
I was misdiagnosed with chronic fatigue, fibromyalgia and arthritis for over 25 yrs. This disease took the best yrs of my life. You are young and don't want to see that happen to you.
I was finally diagnosed with Lyme and co-infections in 1999 by an LLMD (Lyme Literate Medical Doctor)
The mainstream lab tests are unreliable. Igenex is the most reliable lab for tick born disease. May I ask what meds your doctor is treating you with? Do you still take pain meds?
I hope and pray for your healing and full recovery,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Hi Brooke, Glad you had the test, but I think we need to clarify, the tests can be inaccurate. I tested negative this last time around when I relapsed, but had all the symptoms.
So my LLMD simply said start taking the antibiotics and if you herx (herxheimer reaction you get very ill) then we know you are still have the Lyme bacteria in your system.
A couple of weeks after starting the antibiotics I herxed. For some it takes longer then that to herx, but that is how we knew. That is one simple way to know if you've got it or not. That is written in simplified terms my Dr's explaination was much more in depth.
Take Care, Ann
" Lyme disease is growing at four times the rate of AIDS and is quickly becoming our nation's most misdiagnosed and fastest-growing infectious disease. Educating the public and physicians regarding the disease and the progression of treatment is essential."
I was very touched by your episode on intervention.
I also just watched your interviews that you posted above. WOW, you are a totally different person.
I am also from Oklahoma and was recently diagnosed when I saw your episode. It still brings tears to my eyes when I think about it!
I know you now have a diagnosis of RA and fibromyalgia. I was on my way to an MS diagnosis when my western blot (IgeneX) came back positive for lyme. I believe that the infection can be a trigger for other illnesses, especially certain autoimmune diseases.
I have been "fighting" this disease for about a year now. It isn't anything simple to diagnose or treat and can be misdiagnosed especially in our state where they deny that it even exists.
I am not here to say anything except for you to please keep lyme disease in mind. It COULD still be at the root of all of your problems. You won't hear that from any of the doctors, though.
I recently had to stop antibiotics (because of side effects) and have begun developing "fibromyalgia". I wake up every day with pain in my back neck and it is spreading into my arms. A lot of my neuro symptoms are coming back now also.
I have to travel to Missouri for a doctor that would treat me for lyme disease, and I had a CDC positive test.
I just want you to know that all of our comments on here are just because we know how the symptoms of lyme can imitate many other illnesses and we don't want anyone out there to suffer needlessly!!
Congratulations on your recovery!! You look great also!!
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Brooke, Are you still here?
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Brooke,
I was misdiagnosed for 21 years with fibromyalgia.
Thousands of people have had negative western blots and still have lyme disease. Most Dr's don't understand lyme enough to know that.
Western blots should be done through Igenex lab in CA. They are a specialty lab. They have superior testing methods and are the only ones who test for all bands....a necessity.
There is a really great symptom checklist in the back of this booklet....read through it and see if you have had a number of them....
We all care about you. That is why we are giving you this info and asking questions. I am glad you are feeling better.
We see people all the time who probably have lyme and don't know it.
It is really important for you to know that lyme is NEVER ruled out by just a lab test...never.
Please come back here frequently.
We really do care.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Thank you all again for your comments and concerns. As far as I can tell from personal research Lyme disease does not cause deterioration of joints. When my Xrays came back they showed massive deterioration (especially of my knees and ankles) does anyone have evidence of Lyme disease causing these symptoms?
Posts: 5 | From Oklahoma | Registered: Mar 2009
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posted
Can Lyme Disease Cause Arthritis? No one can explain why every joint in my body is deteriorating at such rapid rates. I am 55 yo and ever since having severe Lyme disease and Bell's Palsy at age 50, nothing has felt right.
They called it Fibromyalgia for years, until I inisted on MRI's and then they discovered, bi lateral carpal tunnel, a destroyed knee, two bunions which never healed after surgery, invasive sinus surgery with chronic infections,severe hip pain, and severe scoloiosis and degenerating discs with severe back and neck pain.
My hands hurt and developed enlarged joints under the thumbs. My lower back has fused together, and the pain is relentless. I am on Oxycodone, but after 3 months they are losing their efficacy.
Vioxx didn't work, I developed GI bleed from Ibuprofen and am limited in my choices. Could the severe back labor I endured for 15 hours at age 41 have done this to my back? and thrown my body into a premature decline or is it more likely the LYME.
I wasn;t diagnosed for four days after collapsing and being admitted to the hospital. Is there any hope for me, or am I doomed to a lifetime of pain and deterioration?
Chancellor et al evaluated 7 patients with confirmed Lyme disease and associated ... and severe joint deterioration
Difficult to diagnose, chronic lyme disease is contracted by a tick bite and ... Persistent joint inflammation can cause a deterioration of cartilage.
In later stages Lyme disease causes swollen joints, especially at the knees, .... progression of arthritis and joint deterioration.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Brooke,
One of the MAJOR symptoms of Lyme Disease is arthritis. Is your doctor treating you with antibiotics?
This is what they found in the children in Lyme Connecticut in 1975. They were exhibiting symptoms of arthritis. How are you feeling? Do you have any other symptoms beside joint pain?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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bettyg
Unregistered
posted
brooke,
hi dek,
so glad she posted!! i encouraged her to start her own post ...
don't know of anything BUT please go to TREEPATROL'S newbie links at top of medical.
look for the name ART DOUGHERTY; he did outstanding work at collecting things.
click on whatever link you find for him will lead you to everything else he did!!
he had shown all 300 other illnesses and how they and lyme compare, etc. WITH LINKS!
might be what you need there; here's treepatrol's link!
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I know Lyme can affect so many parts of the body. I read today about someone who said it was literally eating her leg muscle.
While I have mostly neuro symptoms, muscle twitching, trouble remembering, ect, I have had 2 episodes of knee swelling and pain.
I second that about getting tested through Igenex.com
They actually test other strains of Lyme. I think I may have the STARI strain, I think I was bitten in South Carolina 12.5 years ago.
If you don't have the ONE strain labcorps or Quest tests for, you are out of the loop.
Good luck to you Brooke. I did not see the show, as we don't have cable (don't want the kids watching most of what is on), but I can only imagine how difficult your life is/has been.
Lyme for me has been a terrible disease, esp since I was misdiagnosed with Chronic Fatigue Syndrome early on and never knew what I really had.
The synovium may become the seat of acute or chronic infections related to bacterial, fungal, or viral organisms.6
These infections almost always arise from blood-borne organisms and may be part of a systemic infection.
The infection is based in the synovium.
The cardinal pathologic findings include intense infiltration by neutrophils with resultant necrosis of the synovium and subsequent formation of granulation and scar tissue.
A dense mass of fibrin, infiltrated by neutrophils, forms over the surface of the synovium.
Bacterial products released within the joint are capable of producing rapid cartilage destruction.
The Lyme Disease testing is flawed and even the CDC says it should be a "clinical diagnosis" for that reason.
Perhaps a consult with a LLMD wouldn't hurt and it just might help.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
more evidence?
Ann Intern Med. 1987 Nov;107(5):725-31.
[url]http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1865634]The clinical evolution of Lyme arthritis.[/url] Steere AC, Schoen RT, Taylor E.
Department of Internal Medicine, Yale University School of Medicine, New Haven, Connecticut.
To determine the clinical evolution of Lyme arthritis, 55 patients who did not receive antibiotic therapy for erythema chronicum migrans were followed longitudinally for a mean duration of 6 years.
Of the 55 patients, 11 (20%) had no subsequent manifestations of Lyme disease.
From 1 day to 8 weeks after disease onset, 10 of the patients (18%) began to have brief episodes of joint, periarticular, or musculoskeletal pain for as long as 6 years, but they never developed objective joint abnormalities.
From 4 days to 2 years after disease onset, 28 (51%) had one episode or began to have intermittent attacks of frank arthritis, primarily in large joints; a few had polyarticular movement.
The total number of these patients who continued to have recurrences decreased by 10% to 20% each year.
The remaining 6 patients (11%) developed chronic synovitis later in the illness; of these, 2 (4%) had erosions, and 1 (2%), permanent joint disability.
The spectrum of Lyme arthritis ranges from subjective joint pain, to intermittent attacks of arthritis, to chronic erosive disease.
PMID: 3662285 [PubMed - indexed for MEDLINE]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
More evidence? This was published in 1987. The connection's been known for over 20 years.
Department of Internal Medicine, Yale University School of Medicine, New Haven, Connecticut.
To determine the clinical evolution of Lyme arthritis, 55 patients who did not receive antibiotic therapy for erythema chronicum migrans were followed longitudinally for a mean duration of 6 years.
Of the 55 patients, 11 (20%) had no subsequent manifestations of Lyme disease.
From 1 day to 8 weeks after disease onset, 10 of the patients (18%) began to have brief episodes of joint, periarticular, or musculoskeletal pain for as long as 6 years, but they never developed objective joint abnormalities.
From 4 days to 2 years after disease onset, 28 (51%) had one episode or began to have intermittent attacks of frank arthritis, primarily in large joints; a few had polyarticular movement.
The total number of these patients who continued to have recurrences decreased by 10% to 20% each year.
The remaining 6 patients (11%) developed chronic synovitis later in the illness; of these, 2 (4%) had erosions, and 1 (2%), permanent joint disability.
The spectrum of Lyme arthritis ranges from subjective joint pain, to intermittent attacks of arthritis, to chronic erosive disease.
PMID: 3662285 [PubMed - indexed for MEDLINE]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
There was more info posted for you here in this thread by another member:
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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adamm
Unregistered
posted
Brooke,
Please, Lyme disease is nothing to mess around with. Yes, it can erode your joints (http://iai.asm.org/cgi/content/abstract/69/1/456), but, honestly, that's the least of your worries when you have it. Far more common and horrific is neurodegeneration, most often resulting in a dementing illness.
You really need to read up on this disease--public health bigwigs have been lying through their teeth about it since it emerged, and as a result, most doctors either don't know enough about it or are too scared to treat it the right way (with aggressive, long-term antibiotics). Any of these sites would be a good starting place.
I have Lyme that has caused degenerative arthritis. I tested negative for RA, ANA, etc., so could only be the Lyme that's causing it. PM me if you have questions. (Just click on that little envelope with the two people standing next to each other in the top part of this message)
I know this is all so confusing! I refused to believe it at first, that I could have a disease and not be diagnosed straight up with that disease.
Your best bet for getting all the facts would be to get your hands on either a copy of Cure Unknown (the definitive book on the Lyme controversy) or a DVD of Under Our Skin, a movie that explains it.
Its a LOT of information, but the Road Back foundation suggestion was great. As I do have degenerative arthritis, I am also a member there. http://www.rbfbb.org/ This is their bulletin board. They treat straight up arthritis as well, if it turns out that you don't have Lyme involvement.
They say that RA is a chronic illness and it can't be cured, but there are other options out there other than just containing it, you can stop it. Its not something that gets out there much, but it does exist.
Again, PM me if you have questions. Watching your show was a great wake up call, and I would love to return the favor.
Posts: 55 | From New York | Registered: Nov 2008
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posted
Hi Brooke - thx for coming here to post! I watched the first program and was really moved by what you were going through.
I thought by your report of pain symptoms that you might have Lyme disease.
Yes, the Lyme bacteria can cause arthritis, as Ali and others have reported here. It was I think the earliest symptom report for the condition,
when kids around Lyme CT were showing up with arthritis in their knees at age 12.
I just watched the videos you posted here. I'm glad that you and the others got assistance in managing pain at the center.
I too went through pain support groups and a rehab program.
I had fibromyalgia for 25 years, and swollen joints in the end. Then I found out I actually had Lyme disease,
from a known tick bite that I didn't know had given me the disease.
I bloodtested postive. Not everyone does; there are many reasons why people with the disease may not test positive.
Then I went on clindamycin antibiotics, 150mg, 3-4x/day. In one week's time, the fibro pain of 25 years went to zero and my joint pain decreased in my knees and ankles.
I am still treating with the antibiotic. I also take probiotics, for intestinal health.
We all respond differently to different meds. There are many antibiotic treatment options.
You obviously got good care at the center and have learned to manage yourself well.
But I still hear you saying that you have symptoms.
So I would like to ask if you might be willing to think about the possibility of an antibiotic test, to see how you respond.
I think we would all prefer that you do this under the care of a Lyme-literate doctor. I'm assuming you are back at home in Oklahoma?
People here on this site could let you know who's closest to you.
[ 04-02-2009, 03:21 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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I spoke to my Dr. this morning to get a little better understanding of my treatment and this is what he said
The diagnosis of lyme disease can be difficult there are sophistacted tests for a diagnosis which at time give incomplete information. Certainly arthritis is a component of lyme disease and you could have more than one illness such as lyme and arthritis at the same time. Lyme disease tends to be limited if one is treated correctly whereas arthritis is a chronic recurring problem. Dr. Rand was able to distinguish between the two and to treat in such a fashion that my arthritis went into remission. He explained to me that many of the medications taken for either Lyme disease or arthritis affect the immune system. Reducing and changing my medications was the most significant factor in having my illness go into remission. Bay Recovery has treated many Lyme disease patients in the same way with positive results.
Posts: 5 | From Oklahoma | Registered: Mar 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi Brooke,
I am glad you are doing well and that you talked to your Dr.
I agree that Lyme can be difficult to diagnose.
Your Dr says that lyme tends to be limited if one is treated correctly, whereas arthritis is a chronic recurring problem.
The very important part there is that 99% of Dr's do not really know how to diagnose lyme, therefore it is very often not diagnosed or treated correctly.
When lyme is not diagnosed and treated extensively very early on, it disseminates throughout the body causing chronic lyme.
Even if lyme is recognized early on, 99% of Dr's think that 3 weeks of doxycycline "cures" it. That is simply not the case.
There are thousands of people with chronic lyme because soooooo many Dr's THINK they know how to diagnose and treat it properly, but they do not.....we are living proof.
That is why we are all on this board! Lyme is a CHRONIC and RECURRING problem. There is no cure, just remission.
I wasn't sure from your message if maybe you had taken long term antibiotics as part of your arthritis treatment?
We all have chronic lyme here because Dr's often do not really know much at all about lyme...they just think they do.
Here is the link to a post I put on the Medical Questions board asking people to post their info re: how lyme causes joint deterioration...some of the same responses are on this post in General Support and some are new ones.
Please come back and keep posting. Feel free to start a new post here or in Medical Questions.
We really do care!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi Brooke,
I am so glad to hear that you are in remission and not suffering. I hope this continues for the rest of your life and that you have a long happy, healthy life.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Hi Brooke - yes, it is challenging to get a positive test result for Lyme, for many reasons, not the least being that the bacteria can go into hiding.
For example, the IgM and IgG antibody tests from the IGeneX lab catch about 60-70% of people who are actually positive.
That's why the illness is often treated clinically - based on history and symptoms.
When we do a challenge test with antibiotics, we get to see how we do. As I said above, I had a great response, personally.
As Dekrator said, it's not clear whether you were treated with antibiotics or not. Up to you if you want to let us know what the meds were that helped you.
Anyway, it's good that you are feeling better, if you are.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I haven't posted much lately (or at all, for that matter). But, my husband's opinion is if you go to see a LLMD with the possiblity having Lyme, that you automatically have it. And that every disease is caused by Lyme according to LLMDs. My western blot had a couple of questionable bands, but my symptoms made him (doctor) decide. I just don't know anymore.
I wonder how many friendships, relationships have been ruined over this hideous stuff. I know that I have lost quite a few. And family members that don't get it.
Still suffering and not on meds. Am going back to my LLMD next week. Best wishes to all of you.
Posts: 44 | From Oklahoma | Registered: Aug 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hey Kiwi,
I think some LLMD's will automatically say you have Lyme, but the 2 I have gone to have not said that. Even with my Igenex, the first one said he was 90-95% sure it was Lyme. The second one said he starts abx if you have symptoms, if you get better or herx, then you have it. If not, you don't and it's something else.
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