lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Greetings. I haven't posted in a while. Just been too sick to keep up with life
Well, not to make this message too long, but I have had growing pains and swelling, especially in the lymph nodes, joints, tension on chest and pain with breathing,...
I have been treated for a definite case of lyme/babesia since 2002, and was infected probably a decade before my diagnosis.
The past six months have been the worst on record.
I have just received two positive lupus tests, one the ANA and another specific lupus test. And these new growing pains and swelling, hair loss, numbness, etc. all fit the picture of lupus as well.
I guess you guys know that lupus treatments DO NOT co-exist with lyme treatments.
I'm scared, very heavy hearted, really scared.
I know it could be "drug induced lupus," which I am testing by dropping the antibiotics.
I have found the Minocycline and on one list, cleocin, could cause DIL (drug induced Lupus). I was on cleocin very, very long term. I also take claforin IM, and biaxin. Also, Malerone, and Plaquenil.
Has this happened out there to anyone? I did the search function and found very little support that way.
Help. I want to throw myself over a cliff, but I have three children living at home.
Mary in Switzerland
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Is it against the rules to "UP" your own post?
I clinging to the computer for calm my fears. :-(
mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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kelmo
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Member # 8797
posted
No, it's not against the rules to up your own post. Sorry no one has answered you.
Is there a specific test for lupus? I think my daughter would've been diagnosed with it if given enough time and one more specialist...she had every other "syndrome".
Do you have a positive ANA? Do you have general pain? My daughter had a positive ANA, and so have many other on this board.
After three years of antibiotic treatment, the ANA is now normal.
I have a friend who was given a Lupus diagnosis. I've lost touch with her, but heard from someone else that she is in full remission.
I know she was going the natural route, but no more information from there.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Just looking on the internet..www.medicinenet.com, it says that anti-malarials like Plaquinil are helpful for people with Lupus.
Makes you go....hmmmmmmmmmm
Posts: 2903 | From AZ | Registered: Feb 2006
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Mary, I am so sorry to hear what you have been going through. I want to get right to the point and say YES, I had a very bad experience with Minocycline after taking very low doses (25 mg every other 3 days up to every other day) for several months. This was the highest dose I could take, due to large Lyme-load from 20-35 years of untreated increasingly-symptomatic Lyme.
At first it was making me feel better, other than herxing (I had a couple of days where I actually was able to leave the house AND walk through a grocery store, though with much difficulty - something I hadn't been able to do in over 2 years at that point).
But, after about 5 months or so, I started having excruciating joint pain and swelling, I mean level 11 on the pain scale, at least. This was far worse than my usual daily joint pain and swelling - though it approached my worse days with Lyme. It was just every day, 24/7.
My already generalized pain went through the roof. I was losing hair like crazy. I was in torment and I wanted to die. I finally gave in (I was new to this and wanted to keep pushing ahead and was afraid to try a new drug), and told the doctor what was happening.
I looked up my problems online and found it to be very much in line with Drug-induced SLE (Lupus). They had me stop taking it. After about 1 month I started recovering back to my regular Lyme-level joint pain and swelling. My hair stopped falling out everywhere.
I never was tested for Lupus during this time, because I knew that Lyme can cause Lupus symptoms and test results (ANA etc.), and that the drug I was taking was one of the biggest DIL culprits. I have Lyme-specific bands, and respond to antibiotics (slooowly), so I didn't want to complicate my already confusing patient profile with Lupus testing (I had already been misdiagnosed with sero-negative RA, FMS, and CFS).
You mention you did a search for Lupus info on this site and came up with very little, but you might want to try again, because I recall a lot of threads about it. Many people have posted after having been diagnosed with Lupus (tests and all were Lupus positive) and then they found out they really had Lyme, went into antibio treatment, and the Lupus test results eventually turned negative.
I would really look into that Drug-induced SLE/Lupus aspect. Perhaps you can start a natural antibiotic regimen for a while, and take a break from all prescription antibiotics for a few months? Have you tried Ceftin? It is my wonder drug after the failure of the minocin class from what I am sure was DIL/DSLE.
Is there a way to try that route before taking Lupus drugs? If they make you take Lupus drugs, can you opt for the immuno-modulating ones rather than the immuno-suppressive? I still would try to chase this DIL first, but that is of course up to you and your chosen Doctor.
Please let me know if you have any questions, and if I can recall what those threads were I will try to dig some up for you ok? Good luck, Mary!
posted
I tested positive for Lupus several times throughout my MS / Lyme odyssey. I was told by both docs that the Lupus test is very non-specific and can come out positive if you are being treated for another autoimmune disease, or Lyme.
I wouldn't (and didn't) get too upset about it.
Posts: 252 | From NJ USA | Registered: Mar 2004
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nenet
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Member # 13174
posted
Wow, dsiebenh, I never heard about that! What kind of doctors told you? I would love to find some documentation about this so I can post it for others when this comes up again.
Mary, I found a thread with this note from Tincup about the butterfly Lupus rash:
posted
Do you know what the second test was that was done (anti-DSDNA)? SLE does not have really definitive tests, and ANA does not mean much IMO.
Did they do a chest xray to check for pleurisy or pericarditis?
Most of the symptoms of SLE overlap with Lyme (except for kidney involvement), so it may be hard to say exactly what is the root cause - any chance that this is herx from a recent change in Lyme treatment?
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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lymewreck36
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posted
Well folks, let me see if I can answer these questions. You are all wonderful human beings to take an interest. My siblings could care a less.
The testing I had...positive ANA and very, very high positive for "single-stranded DNA" something or other very specific to Lupus.
I have been having regular lupus tests since the beginning of my treatment in 2002. Even last fall, it was a normal test result.
Treating lyme/babesia and symptoms, have been a very familiar thing all these years. Barely surviving, but very sure about what symptoms belong to what disease.
Then, this winter, I was unable to walk, my vision changed and has not gotten better. I cannot read bottle labels.
The small bones in my feet were in horrible pain I haven't had before. My left knee swelled to be 1/3 larger than the other knee.
My hair started falling out. My left arm and leg started going completely dead when I sit. My chest hurt when I took a deep breath, my heart felt like thick blook was flowing through it.
MY BLOOD WORD BECAME STRONGLY POSITIVE FOR LUPUS on two different blood tests, the ANA and this other single stranded DNA test.
I have a strange increase in upper body pain, strange headaches (low nagging swollen feeling),
I cannot breath, and trying to raise my heart rate makes me gasp for air I cannot find.
I went up to the Swiss Alps and for the first time had altitude sickness and couldn't breath, became too dizzy to stand, heart pounding......
For sure, after being a lyme activist and patient since 2002, and reading extensively and documenting my symptoms, I know that what is happening how is a new cluster of things.
From what I read about Lupus, it is an awfully good match....even the fever.
I do NOT have the butterfly rash, or any other rash, and I did read that DILE usually does not involve the skin, so that gives me hope, for what I do not know, because dropping my medications is scarey in itself.
I did a search in the Flash discussion for "LUPUS," and something like 8 references came out of that. I figure the more general the search is, the more stuff will come up.
I have been reading all over the internet. You see, I have these three lovely daughters that I am not ever going to be ready to say goodbye to. I think you all understand this.
I have 2 1/2 weeks of company about to arrive, I am chairing the entertainment for the school's international festival here in switzerland, and I have 12 family members from Lebanon coming for two weeks in July.
Let's not forget, I am very type-A.
I'm doing the freak, quietly, inside.
"Lord, let this too pass from me."
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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The people here are giving you good information for you to further examine your situation. I think your doctor - or whoever is administrating the tests has tunnel vision.
To date I don't know of any tests which are definitive for Lupus.
My daughter was ANA positive and diagnosed Lupus about five years ago. She never had Lupus - she had Lyme all along. This has been confirmed by tests and doctors.
Unfortunately, the Prednisone (steroid) only made the Lyme disease now more difficult to fight. She was only diagnosed - finally - 9 months ago. Now she is in treatment with a Lyme Literate MD.
Since Lupus has not treatment toward cure. Has only treatment to attempt to alleviate symptoms with medications potentially harmful to your overall health.
Please look for the cause of your illness and also consider that your health problems may be due to Lyme and/or co-infections.
You will be better off is your treatment program is geared toward getting you well.
Best wishes for your recovery. -p
Posts: 641 | From So. CA | Registered: May 2008
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bettyg
Unregistered
posted
hi mary,
3 times i was diagnosed w/lupus thru the ANA... never treated for it; later correctly dx as chronic lyme after 34.5 yrs. being misdiagnosed by 40-50 drs.
check out NIH's medical library here...info galore!!!
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Wow Betty. That is a good link. I can't thank you enough.
I do think, from reading the responses here, that everything is not lyme disease. I DO believe A LOT of things are lyme disease, but no one responding here seems to be taking seriously the context of my concern, or understands that a person can know when something new is going wrong, or give a person credit for being informed and having a valid concern.
I thought I might get "information," but the most popular response I am getting is everyone with lyme is told her/she has lupus at one point.
This response ignores the information I provided and does not take it seriously.
Having the attitude that it is lyme without taking the concern seriously is very dangerous.
Let me end by saying that anyone that responds to anyone's posts is an angel. We help strangers just because we care.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by lymewreck36: I do think, from reading the responses here, that everything is not lyme disease. I DO believe A LOT of things are lyme disease, but no one responding here seems to be taking seriously the context of my concern, or understands that a person can know when something new is going wrong, or give a person credit for being informed and having a valid concern.
I thought I might get "information," but the most popular response I am getting is everyone with lyme is told her/she has lupus at one point.
This response ignores the information I provided and does not take it seriously.
Having the attitude that it is lyme without taking the concern seriously is very dangerous.
Mary, did you see my very long reply? I apologize if I wasn't very clear in my post - I was rambling a lot due to Neurological Herxing. I told you I got Drug-Induced Lupus from Minocycline treatment.
I don't understand how you can say no one gave you any relevent information? That took me a long time and a lot of energy to write, and I was trying to help you. You asked about Drug-Induced Lupus, and I gave you my own personal example. Please, if you missed it, check it out.
posted
Are you sure your "lupus" isn't really undiagnosed Electromagnetic Hypersensitivity? The radiation from these towers and antennas causes some people's immune systems to go into overdrive.
In the link below, see "SECTION 8: Evidence for Effects on Immune Function, Dr. Johansson". In fact, if I remember correctly, Dr. Johansson is even a Swiss doctor.
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Dear netnet:
Your reply was the one that seemed most helpful to me.
You said the following in your SECOND post:
"Mary, did you see my very long reply? I apologize if I wasn't very clear in my post - I was rambling a lot due to Neurological Herxing. I told you I got Drug-Induced Lupus from Minocycline treatment.
I don't understand how you can say no one gave you any relevent information? That took me a long time and a lot of energy to write, and I was trying to help you.
Let me clear this up. I did NOT say everything I received was not relevant.
I DID say that the "MOST POPULAR" response was everything is lyme.
That means that there are other responses that do not fall into that category.
I have read your post over and over, and I thank you for offering it. I do have other questions to ask you, but since my kids are playing the piano very loudly in my ear, I'll check back in this evening to do it.
I live in an apartment like most Swiss people do. Boy, do I miss having a house and a place to plant flowers.
In response to another post, let me say that no doctor is pushing the lupus diagnosis. My lyme doctor in U.S. and the lyme doctor in Germany were concerned about the results and said that as long as I don't have Lupus symptoms, assume it is a lyme thing causing abnormal blood work.
But......I do have symptoms that are driving me up the wall. Yes, I do, and I have monitored and journaled my lyme/babesia journey for 7 years, and I can know when something new is happening.
So now I will seek a rheumatologist to monitor the situation, but as always, I am informed and seek the the advice and experience of others.
Never leave your health care in the hands of one doctor. Never.
It is so hard to read "tone" in print.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Ah, ok glad everything is copacetic. Well, not everything, as you are feeling so badly, but you know what I mean.
My husband spent a lot of time in Switzerland over several years for work. Mostly in Zurich and Basel, but he did go to/live in different places as well. He managed to spend so much time there he became passably fluent in Swiss-German.
We planned to move there at one point - it was gong to be a hard decision, since we are used to large green open spaces, as we like living in the country. Country land here is much cheaper, compared to land outside of cities in Switzerland. Someday we plan to go there together, when I am in remission.
Sorry for the off-topic post there. I seem to be in a rambling mode today.
posted
Since SLE and Lyme are both largely clinical diagnoses, it is pretty hard to say what is going on for sure. The + anti-ss DNA test is more specific for SLE, but rheumatologists still do not know if those antibodies are a cause or effect of the disease. Since both Lyme and SLE share many symptoms, it would probably be best to treat both if possible.
I do wish I could offer you more, but here are two thoughts - with SLE, the anti-ss DNA titers usually go up when the disease is most active. If repeated tests do not match symptoms, in my mind that would make Lyme a more likely cause.
You mentioned the pain with deep breaths - what did the MD do about that? Pericarditis is a serious concern, if that is what is happening (but that is by no means certain). I do hope that you can get some answers on that symptom in particular.
The whole intersection of Lyme and SLE is kind of difficult - certainly some SLE is misdiagnosed Lyme (and some Lyme may actually be SLE), Bb infection may trigger SLE which resolves with treatment, or maybe they just share symptoms and you can be diagnosed with both.
My best wishes are with you, and in this case I will hope that it is Lyme and not SLE. Lyme is not something to wish on somebody, but in many cases there is a cure or at least sustainable remission.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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lymewreck36
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Member # 4395
posted
Thanks you guys. There is good stuff for me to extract from your emails. Anyone else want to contribute???????
Just talking to you folks helps. My family just has no idea what is going on in my body. I wish my husband could "feel" for one day what I feel, as long as it is one day.
Then I would know that I am not so alone. Lymenet helps tons.
Living in Switzerland.
I live in BAsel. It makes me feel very alive. Moving from Lower Alabama to Basel was like....over the top wonderful.
O.K. So I dropped all my lyme/babs medication for a day and the lymph swelling seems better.
What happens if I can't take my meds?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymeparfait
Unregistered
posted
Try the natural route.
Take a drive over to see Dr. W. who does the bionic 880 treatment for lyme and other issues., and start his natural protocols. (bionic 880 posts)
He is a follower of Dr. K., and he has great treatments for healing!
He is close to Basel. He can help you get started in a healthier direction, if you do not want antibiotics.
I have lyme induced lupus. I understand your concerns. Lupus was scaring me more than lyme.
But now it is moveing toward remission, and possibly will clear totally. My LLMD, says her lyme patients with lupus usually have it induced by lyme. When they get their lyme in control or remission, the lupus clears for at least 95% of patients.
Keep positive. Negetive thought will impete healing. Keep moving forward slowly with your treatments, and don't rush things. People here hae lots to offer you!
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thank you so much lymeparfait. May I ask, for you and "Nenet," how do you treat lyme/babesia if you have drug induced lupus, or how do you treat lupus while treating lyme/babesia?
If I had an answer to this, I would be less afraid.
But right now, I am so very afraid. I don't want to leave my family...not for a long time.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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nenet
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Member # 13174
posted
Hi Mary - I mentioned before but it is buried in my *whale* of a post. I stopped taking the offending drug, since mine was Drug-induced Lupus, and the horrible new symptoms went away after a while.
I think it was a few weeks to a month before I was back to my normal Lyme self. I switched to a new LLMD during this period (for other reasons) and they took me off the Minocycline when this happened, and switched me to Ceftin, which is helping gradually, and not causing me any problems so far.
The Minocycline was great for about 2 months, complete with Herxing and lessening of symptoms to a small degree. But in the 3rd month it was VERY apparent that something NEW was wrong when I started getting worse and worse, with no letup, and my joints were so much worse than my worst Lyme Herx.
I was also losing my hair like crazy, among other weird things. I had a new kind of pain everywhere that was unbearable. I also was having even worse problems with my menstrual cycle - they got the farthest apart while I was on Mino, and have gone back to normal on Ceftin. Like you said, I knew/know my body, and what a Herx is like, and what Lyme feels like, and this was *different*.
So I looked up Minocycline (or Minocin) on www.askapatient.com and learned it is one of the biggest Drug-Induced Lupus offenders, researched Drug-Induced Lupus/SLE some more, and put 2 and 2 together.
posted
The labels aren't important. Did you have the double-stranded anti-DNA, or the single stranded?
My daughter had a high ANA, a positive DS anti-DNA, and low complements on tetracycline. I had a high ANA and a positive lupus skin biopsy. Both of us still get sick in the sun, and we have been off tetracycline for a few years now.
For some people with certain genetic markers (like HLA-DR4) Lyme triggers autoimmune activity, which means the body is attacking its own cells. Lupus is just a name for this, and there are other types of autoimmune activity with other labels.
The real question, which others have raised, is whether the autoimmunity continues because the bacterial infection (Lyme in this case) has not been eradicated, or whether autoimmunity continues even if the infection itself is controlled, or even cured.
It may be that for some, treatment of the Lyme reduces or eliminates autoimmunity, but that for others, it does not. I do know that those with the HLA-DR4 marker and the tendency toward autoimmunity with Lyme, tend to have "difficult to treat, intractable Lyme."
In the meantime, don't be scared. Having lupus does not necessarily mean anything dire, such as kidney problems or whatever. Chances are you will improve, or have remissions of the autoimmunity, either because the Lyme is gone, or because things have calmed down.
I have had all kinds of horrible strange symptoms since 2001 (including paresthesias, pain, breathing issues, rash, sun sickness, and all kinds of indescribable sensations) and I am still here, driving my kids around, helping them with work, etc. It will be hard at times, but it will be alright.
One other thing: some rheumatologists are using antibiotics for lupus and for rheumatoid arthritis. Not mainstream, but you can check it out online. And both LLMD's and rheumatologists use Plaquenil. I am supposed to be on it right now, as advised by my LLMD for one reason, and by my lupus doctor for another. Most rheumatologists would recommend Plaquenil to start off, unless you are having something really serious going on. So in some ways, the treatment you do for one, also treats the other, so there is really no conflict and no need to absolutely decide what is going on.
Time clears things up, and you have plenty of time.
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blaze
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posted
I tried. You can't say I didn't try.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I too am dealing with an autoimmune issue. I have already told my story in detail, so won't go all into it; but I treated LD for 1 year with absolutely no results. Then by chance I was talking to my LLMD about how I became ill within 2 days of taking an antidepressants, one of the old ones; and now we think I have a drug induced autoimmune issue. I don't test positive on the ANA, but that is the only test I have had so far.
I am taking plaquenil right now to see what happens. I think it is sort of a guessing game because yuo can't actually rule either illness in or out. All I know is I did not respond to Lyme treatment. I have only been on plaquenil for 2 weeks so it is way too early to tell. But plaquenil won't hurt if I actually do indeed have LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Shosty
Unregistered
posted
suthhrngirl, consider an allergic reaction to the antidepressant...I took amitryptilene (Elavil) one night in 2001, at 10pm, and woke up at 12 midnight with my arms, legs and face on fire. To make a long story short, I was diagnosed and treated for Lyme for 6 years with little improvement. I was also, as I said, diagnosed with lupus (my most recent ANA was sky high at 1:5120, which means little).
Two years ago, I went on an allergy diet (eliminated all possible hidden allergens from my diet) and that probably did more for my symptoms than antibiotics.
That experience, and the comment of one very smart doctor, has recently made me wonder if, despite positive Lyme tests, and positive ANA, my problem on that night in 2001 was actually an allergic reaction to the amitryptilene.
An allergic response would be an immune reaction, but NOT an autoimmune reaction, especially if your ANA is negative.
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Did they run a test called, "histone AB"? This will help determine if it is medication induced lupus.
I also had a positive ANA, but my tests returned to negative after addressing my lyme again.
Feel Better
Posts: 1603 | From ny | Registered: Aug 2006
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sutherngrl
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Member # 16270
posted
Shosty, I think it would be consider an allergic reaction if it had disappeared a few weeks after stopping the med; but it has been 3 years. My LLMD is the one that said it is an autoimmune reaction.
The only test he did was the ANA which was negative a year ago. I am going to ask if there are other test that would point to an autoimmune disorder.
What amazes me is that it is so hard to get a diagnosis for anything. It's like nothing has a test that is fool proof. It just makes being ill that much more stressful.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Shosty
Unregistered
posted
I am not so sure the distinction you describe is correct. The doctor who told me that my 8 years of paresthesias etc. might be an allergic reaction to the amitryptilene was maybe the best doctor I have seen yet. This is maybe a murky area in medical knowledge, and when they say a "reaction" to a drug, I guess this could mean several things.Myabe he meant side effect and misspoke, using the term "allergic."
However, I have met others who are trying to decide whether their seemingly permanent neurological symptoms were from an allergic reaction to a med, or from Lyme, or from autoimmunity- and had been told by doctors that it was, in fact, a permanent residual effect from an allergic reaction. An immunologist or allergist might be able to explain more.
Although some people with autoimmune issues do have a negative ANA, it is only about 3% for lupus,for example. You said that you had not had any other positive labs? From what I have read, a diagnosis of an autoimmune disorder for someone with a negative ANA would require some other positive testing.
I am surprised that an MD would give you plaquenil, unless it was your LLMD who gave it for other reasons.
Did you get your eyes checked as a baseline for another test (I forget the name, something to do with visual fields) in 6 months.
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lymewreck36
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Member # 4395
posted
I want to thank you all for your input and time and caring. I am making my rheumy appointment. I will bring up some questions that came to me through your posts.
Please take care of all of you.
Mary in Switzerland
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Please look at the roadback site, www.roadback.org which is a forum for the treatment of autoimmune conditions with antibiotics. Mycoplasma, Lyme these can all cause lupus. Lupus is harder to treat because there tend to be more sensitivities and so you have to be careful with the meds. There are success stories over there with the treatment of Lupus with antibiotics.
Something you might look into is the genomic testing to see how you metabolize medications. I can't get my links to paste. I'll try later on. Look into Great Smokies lab.
Posts: 984 | From San Diego | Registered: Nov 2006
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Mary, I personally think lupus is the same as lyme and co. Iam not a doctor, I live with it and I am not worried at all. If SSB is elevated please test for bartonella.
Posts: 1834 | From US | Registered: Oct 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
All I know is I did not improve on antibiotics at all; but I am feeling better in just a few weeks on autoimmune treatment. That says a lot to me.
Shosty, my doctor said I do not have lupus, since I didn't test positive for it. He actually calls it drug induced immunological disorder; but it's an "autoimmune reaction", where your own body attacks your tissues. I am very early in this new quest, so I am not sure what other test my doctor will run.
Karenl, obviously there is a difference between a bacterial infection and an autoimmune disorder such as lupus. A bacterial infection should at some point respond to antibiotics. I understand where you are coming from though. I have been there, thinking that LD was "everything". But now my reaction to medication is proving otherwise to me. Or maybe I should say possibly proving. I still need more time to know for sure.
Honestly who cares what you call it anyway. I just want to feel better whatever I have to do. I think most people here would say the same thing. I don't care what medication works, as long as one does.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by Shosty: You said that you had not had any other positive labs? From what I have read, a diagnosis of an autoimmune disorder for someone with a negative ANA would require some other positive testing.
Just to speak to this point, this wasn't the case in my situation, and I was surprised by this as well. I was misdiagnosed by a highly "respected" Rheumatologist, who gave me the Rheumatoid Arthritis diagnosis with complete seronegativity, normal tests down the line, and with no visible joint deterioration at the time on an X-ray or MRI. It was all based on physical presentation and symptoms history.
During the struggle of thinking I had RA, I learned that many people had been diagnosed with that and other assumed autoimmune conditions, with negative tests. This is an unscientific sampling, but it seemed to be a large portion of the accounts I learned about. This was very surprising to me.
So in my case, this seronegative RA Dx occured, but it also ended up being a dangerous misdiagnosis. If I had complied and taken the immune-suppressing drugs he had prescribed for me, I do not like to consider where I might be today.
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