posted
Of course like most I have a positive ANA but Rheumy did what is called an APA Test for Lupus..
ACA -IgG 0-15 Mine 20.8 IgM 0-12.5 Mine 13.7.. Both considered abnormal and a possible indication for Lupus....Gave me prednisone...scared....LLMD advises of course against use Rheumy one of best in country has indicated that since plaquinil did not bring down ANA and many symptoms with lyme of course being non -specific are the same said trust me.
Tough decision....Anyone know of APA--- My sysmptoms at time do seem more than lyme believe me...
Anyone familiar or had these type of tests?
And yes lupus can be drugged induced.....
Lyme Titers IgG 31 iND 39+ 41+++ IgM 23-25 Ind 30+ 39Ind 66+
I do know there are vascular issues going on believe me when Ilay down eyes get very red...warm Anyway any throw in a positive spin.
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I would stay as far away from Prenisone as possible if it were my body. I've used it for one year while infected with Lyme and it nearly killed me.
I'm well aware that more than one disease process can exist at one time, but I'd take my chances if I had Lyme Disease and symptoms of Lupus were present, as well as traditional testing. (Testing by the way which is often positive with Lyme Disease). The fact is, if you do have two separate disease processes, if you treat the Lupus, then the Lyme will get you. The probability is on the side of Lyme.
As far as testing for Lupus: The testing done on you is simply markers of inflammatory responses. Autoimmunity. Remember they don't know what causes Lupus, all they can do is test your immune system and tissues to see what is happening to them. What happens to them is the same as what happens in multi-system inflammatory infections.
Solidify the diagnosis of Lyme Disease. The more objective evidence you have, the less afraid you'll be of rejecting other diagnosis, especially if your symptoms improve as you proceed. Since you have a clearly obscenely positive Lyme Disease test, it may be wise to get a Brain SPECT to see if vasculitis or hypoperfusion is present. This would add further credibility to the inflammatory response of the infection rather than an autoimmune disease like Lupus.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
Dr C of MO added band 66 to his list of significant bands in 2005.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
We really don't know how real Lupus is... remember that. Most LLMDs believe Lupus is really lyme... and that lyme can do some funny things with blood levels... making other test results become positive, etc. ie - ANA, liver enzymes, other Lupus tests, etc., etc., etc.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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quote:Originally posted by disturbedme: We really don't know how real Lupus is... remember that. Most LLMDs believe Lupus is really lyme... and that lyme can do some funny things with blood levels... making other test results become positive, etc. ie - ANA, liver enzymes, other Lupus tests, etc., etc., etc.
Ditto. I have a cousin with "lupus".. I say she has Lyme. She's been hiking in the same countryside as me and she's been a horseback rider for all of her life...in CA and in TX.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I know believe me it's not eay but has anyone ever had an APA test done for lupus when in essence it turned out to be lyme????
At night when I lay down it's like my insides are all swollen, constantly warm, eyes swell and turn red when laying down, brown saliva, coffee grounds...
Don't mean to play devils advocate... 39 means exposed to lyme... Believe me I want this to end. I never saw and EM either...Don't know where I was at the time...remember having pimples on skin that quack at time biopsied but surely not for s...lyme.
One part of me sayd NO one part of me says TRY IT see if it clears up head warm, body swelling, red and veiny eyes, choking sensation after I eat, daily kidney pain...symptom of lupus???/... I see Neuro LLMD this month...
[ 02. October 2008, 05:47 PM: Message edited by: Raymond ]
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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quote:Originally posted by Raymond: I know believe me it's not eay but has anyone ever had an APA test done for lupus when in essence it turned out to be lyme????
What does your LLMD say about this? I'd ask if he/she has ever seen people with positive APA tests improve with Lyme treatment.
Remember that even if steroids make you feel better, that doesn't mean it's not Lyme. If you're autoimmune steroids will make you feel much better temporarily. The question is whether or not the autoimmunity is being driven by an infection that will get much worse in the long run with steroids.
Posts: 621 | From US | Registered: Jun 2006
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posted
Your words have iron in them and I thank you all...I had an eye biopsy done a few months ago which did not heal right... it grew an opthamolic pyogenic granuloma... ABs did not resolve steroid shots did..At the time I was told that was kind of indicative of treatment I may need... LLMD wasn't 100% sold. I was hoping for IVIg therapy....
Doc an Ocular/Immunologist said over reactive inflammatory response suggests hyperresponsive autoimmune reaction suggestive of an autoimmune problem...
LLMD wants to see Doctor's report and of course does not suggest steroids but is behind and will respect my decision...I'll pay the consequences...Lord have Mercy...maybe for a month or until I see neuro LLMD at 5 mg's a day...
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Raymond,
If it helps you at all, my LLMD, who is considered the best in Michigan will use a tiny bit of steroid if indicated.
If you came in with an elevated sed rate, elevated CRP, ANA, my doc would use a tiny bit of steroid along with the abx.
It is a risk/benefit decision. Vascular problems can be deadly w/o intervention.
I do not know if 5 mg of predisone is a "tiny" ammt or not.. .. But I would thouroughly discuss this with both your LLMD and the Rheumy. Can't they consult with one another?
Feelfit Posts: 3975 | From usa | Registered: Aug 2007
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posted
Thanks feelfit...As I mentioned to you I spoke to my cousin who mentioned something about he was on roids with ABs for awhile for lyme
5mg is not allot as compared to what they put you on when you are doing a "prednisone taper"
Risk benefit best way to take it. All the stuff we been through. Although pred not the best answer sometimes I don't think ABs sole answer either.
60mg -6 days 50 - 5 days 40 -4 days.......
I'll hopefully use caution. Not sure what MetalicBlue used as a dosage maybe it was 5mg..Hopefully we'll get a reply...BI Doc will contact LLMD with reasoning...hopefully by the end of next week....
Thanks again
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
There is absolutely zero doubt you have Lyme Disease, if that Igenex test is yours. I think it's safe to assume it is, since Igenex is a highly competent laboratory. 9 months of antibiotics is a drop in the bucket for severe cases, and with a positive ANA and APA, you surely meet that criteria. Get the Brain SPECT.
I was on all those antibiotics too, and I didn't see progress until 3 and 1/2 years into treatment. I was placed on steroids in 2000 for a year, under the heading of a misdiagnosis. I used doses as high as 80, but most of the time I was around 30-40mg, and of course I had to taper. When I did, the disease process spread rapidly and nearly killed me. It was like my immune system went into V-FIB and suddenly sprang back to life with paddles, causing widespread inflammatory disease. If you use the steroids (Higher doses for extended periods is obviously the most dangerous), it's game over and you'll set yourself back years. Small doses can be used if acute and necessary, as long as high dose antibiotics are being used. It is seriously discouraged unless the risk to benefit supports it.
I noted drastic improvement using Levaquin, Bactrim and IV Vancomycin. This indicates a probable Mycoplasma infection, or BLO, commonly seen in patients diagnosed with Chronic Lyme Disease. If a co-infection is present that is not diagnosed, it is extremely plausible those treatments would fail.
Additionally, AP's (Using an APA) have shown up in numerous studies on patients with Fibromyalgia. What is Lyme most often misdiagnosed as folks? Fibromyalgia. The connection? You could just as easily have Fibromyalgia, which could just as easily be Chronic Lyme, which you test positive for.
You have Lyme Disease and Babesia, we know that. What you need is to explore other combinations of antibiotics and investigate hormonal, nutritional, heavy metals, viral, as well as other possible parasitic or bacterial infections that may have followed the Babesia and Borrelia when you were bitten (whether once or multiple times). Additionally, further work-ups should be investigated long before you accept a diagnosis of Lupus, given your symptoms are common in many multi system disease processes. If all other tests reveal nothing wrong, aside from autoimmune markers, the chance of you having something other than Lyme (and associated diseases), is rare. You may have complications underlying Lyme Disease or other infectious disease.
If there is any doubt you have Lyme Disease in your mind as a result of anyone telling you Igenex isn't a credible lab, that needs to end right now. They are accredited in multiple states with exceedingly high standards: New York Health, California Department, Maryland, Florida, -- there are many more, and they are a medicare affiliated program. They have been randomly investigated over 8 times since 2000, each by a separate laboratory by their own state and by the government. Their accuracy over 8 years for the Western Blot based on independent testing was 98%.
Hope this helps, I highly suggest you weigh the probability of disease processes against the risks.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote: Wednesday, October 1, 2008 Lupus patient I have a stack of interesting cases which I plan to write blogs about sitting on my desk. Since I am at home, I will mention the story of one patient I saw last week.
This patient had "lupus" or systemic lupus erythematosis for more than a decade. She had the classic butterfly rash. She had arthritis, fatigue and frequent episodes of pleurisy.
Her rheumatologist had treated her with corticosteroids and Plaquenil. Her symptoms were poorly controlled.
About 18 months ago I told her about the Lyme hypothesis. She agreed to be tested. Her results were equivocal.
We decided to try antibiotic. Results: No rash, no fatigue, no arthritis and no pleurisy. She ran out of Plaquenil and the symptoms did not recur.
This had not happened in a decade. I asked her if she felt comfortable with the new paradigm. Her answer: A resounding yes.
We are continuing antibiotics which work better than standard fare. She avoids her Harvard trained rheumatologist now.
She is tired of hearing that her experiences are impossible and that her physician does not know what he is doing. It's all a placebo effect.
Placebos don't work for an extended period. Find another explanation if you think mine is incorrect. More complex case summaries will follow. Posted by Lyme report: Montgomery County, MD at 9:31 PM
inflammation, burning, eye problems: may want to also consider bartonella, which is supposed to have poor testing, and often treated empirically.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: It is a risk/benefit decision. Vascular problems can be deadly w/o intervention.
I do not know if 5 mg of predisone is a "tiny" ammt or not.. .. But I would thouroughly discuss this with both your LLMD and the Rheumy. Can't they consult with one another?
It's not a lot, and will not likely cause permanent damage if used sparingly (short duration).
And you're absolutely right about acute inflammatory responses, they have to be managed in some way if they're out of control and threaten the patient. Risk to benefit, that's what it comes down to.
I've seen a lot of benefit come from using short term steroids on Lyme patients. One area is acute leaky gut syndrome as an example. I believe this condition is the result of inflammation of the bowel over extended periods of time, eroding the lining, thus leading to the syndrome.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
My first expierence with what ever caused my condition was my body became beet red and from then on my head would get so hot I thought it was going to explode.... Had to leave work..
That along with my left eyeball would swell up everyweek it started...biopsy indicated not a normal response...Hopefully Neuro LLMD can figure something out...Body still get warm every single day, every minute...
Terrible back and kidney pain. Skin is wrinkly and losing weight because there is pain when I eat...At times there ws brown saliva, coffe ground sputum...not other eye is getting red and veiny....lyme? Hopefully neuro gives me SPECT.
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sorry, can't answer about APA.
disturbedme wrote: remember that. Most LLMDs believe Lupus is really lyme...
Yes, that's my understanding. I was told that borrelia inserts it's DNA into ours and this causes our immune system to attack.
My sister developed lupus while in treatment for lyme. It has resolved even though she stopped treatment earlier than she should have.
My mother was on steroids for atypical sarcoidosis (she has lyme) and she became so disabled that she had to be put in assisted living. She was the youngest person ever there and she has never been able to leave. Please think carefully about the ramifications.
As Mike said, 9 months is a drop in the bucket.
Inflammation is a side effect of treating lyme for most people. Consider looking into suitable detoxification and natural treatment for inflammation before embarking on steroids long term. You may need low dose short term but please try other things too.
You may need to change your diet to help with inflammation as well. Digestive enzymes between meals can help. There are posts here about inflammation so do a search here at lymenet for more info.
Hope you can get this under control without long term steroid use.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I agree... 5 mg is not much... but I hope you are on abx now also!
From Dr C's WB explanation:
18: An outer surface protein.
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
In 2005, Dr C added band 66 to this list.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Stopped steroids...will see what happens this month when I go see Doc K then LLMD....
The inflammation or whatever it is I have right now isn't going anywhere, not yet anyway..
Know autonomic neuropathy which can be auto -immunity caused by lyme? ...
ABS=ZPACK AND MEPRON....
Just would love to have two good days in a row, be able to have a beer, watch the pretty ladies dance for a dollar...
Plaquinil did nothing for my ANA so does lupus = lyme or was dose strong enough and long enough?
Inflammation but no elevated CRP or ESR.... more of an immune dysfunction my belief..
IgG subclass 4 lower than normal...bronchiectasis lung disease immune system dysfunction sometimes etiology unknown...CD57 immune dysfunction although CD57 did go up 10 pts but blood test do not always show function.
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
The one thing I have not seen in your "possible" lyme protocol is Bicillin shots or Amoxicillin (sometimes 10 GRAMS per day needed, working up to it).
These have helped some people with lyme, people who have not been helped by anything else.
Just throwing it out there because that is a possible "gap" i see in your drugs you've taken.
You could certainly do Bicillin shots along with what you are taking now.
No one should say they've "tried everything" until they've tried one of those two. With the Amoxicillin, don't bother if it's a low dose though.
Good luck.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I agree, no IV, has bartonella fully been addressed, I know what you are saying Hoos. I thought more of an aggressive treatment but maybe because of the weird symptoms I have not so aggressive????
LLMD did mention these last time but since I've been exposed to lyme and it's symptoms sure would like to have a understanding of what it caused rather than just given ABs and hope it'll cure....no?
You know last time I did steroids some idiot NP said I looked like the kind of gut that gsts migraines anyway so she put me on a taper. Had to stop made me dizzy as all... don't see her any or her MD anymore. It just seems frustrating when it seems your children's lives are splipping out of your hands at times. Just makes me melancholy....
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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posted
I know that the first thing I was diagnosed was scleroderma an autoimmune disease as is Lupus. Then I was told I had fibro. After i went to my holistic doc she told me Lyme I am doing so much better. When i " had scleroderma" I was on Prednisone 10mg,Plaqunel, methotrexate and other things. It actually was probably the worst thing for me. I am not a doc but be careful as you go through this time. If something doesn't sound right ask questions until you get the answers that you need and are right.
Posts: 72 | From Southeastern PA | Registered: Aug 2008
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I have a Igenix pos for Lyme and bartonella. A Cdn positive for Rocky Mountain Spotted Fever and Bartonella. I also have narrow-angle glaucoma, experienced a closed-angle glaucoma attack in 2004 and has several operations for this.
My family doctor put me on steroid shots in my left kneed, lower middle spine and right back hip (sacroiliac) along with steroid puffer for sinus problems; this was back in 2003. I was diagnosed with lyme, RMSP, and Bart in fall of 2003. Went on abx for 6 months, stopped to see if I was *cured*. Eye problems went major, eye problems were misdiagnosed and landed in hospital with closed-angle glaucoma attack. I now have a permanent distorted vision in my right eye and am on drops for glaucoma.
Back on abx in Jan 2006, eye problems much much better along with lyme symptoms. Stopped in June 2007 as out of work and no way to pay for continuation of abx. Since that time my eyes are much much worse, so I know that abx were helping. Minocycline is being used to treat early glaucoma with great success.
When I was doing research about glaucoma and other eye diseases, I read that I needed to sleep propped up with 3 pillows plus 1 under each arm. Lymies have low blood pressure, when sleeping lying down at night, all people's blood pressure goes down; in our cases, our bp goes way down which means in the morning eyes are very bloodshot and sore and blurry. When bp is down, very little blood gets to the eyes and the brain, which is very bad for anyone with eye problems. I thought I would never get used to sleeping this way, but I have.
I also used 3 different kinds of eye drops throughout the day (plus my glaucoma drops) that help a lot, that is when I remember to use them. I also know that food plays a role in how my eyes feel; best to keep to a really high alkaline diet. Even without abx, I need to stay away from sugar/carbs/fruit/beef and anything with artificial dyes/tastes, etc. I also found that I have a pillow that has no feathers/down, etc. It is a special filling that helps with allergens, etc.
My twin sister has lupus/scleroderma and she realizes that she probably has lyme, etc., after being bitten hundreds of times throughout the year, but is not able to get into see an LLMD (everyone knows what is happening here in Canada) and cannot afford to travel to the States. She is very very ill but realized many years ago that steroids would not help her at all.
She belongs to a lupus/scleroderma group and from info learned that once one starts steroids, then one goes downhill very fast, she lost a few friends to this in the past year.
In a lupus/scleroderma conference this summer, the speaker (a well-known and respected neurologist) said that he felt lyme triggered lupus, etc. and that our CDN tests were notoriously poor and unreliable and if possible, go to the states for treatment.
Knowing what I know now and what I have been through, I would never take steroids. That's a path you don't want to experience.
I understand where you are coming from and hope that you wait until you see your LLMD and do what he/she says. I also have vasculitis problems and try to day to day do what helps me. My own glaucoma specialist agrees that I should be on abx for lyme, but cannot treat me for lyme.
Corinne
Posts: 461 | From Abbotsford, BC, Canada | Registered: Oct 2003
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