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I’m rereading the Richard Horowitz book ‘Why Can’t I Get Better’. How could I miss this part the first time!
On page 44-45 it says…
“….Lyme disease can cause false positive ANAs and rheumatoid factors due to a patient’s overstimulated immune system. This can lead to a mistaken diagnosis of lupus or rheumatoid arthritis.”
How could I have I missed this before?!
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
I personally would debate that statement. That statement presumed that there is a “real” lupus or a “real” RA…. I think Lyme, and other infections cause real rheumatic illness.
Yes, Cheryl F, thats my thoughts exactly. It sounds like that statement of his is the bridge leading to what your saying. The book is fron 2013… maybe that will be the conclusion down the road. Maybe thats why diagnosing is so tricky and why when some people get adequately treated for lyme, their autoimmune disorder falls aside.
I wonder too if it affects some people’s success with AP… there must be a really wide variety of coinfections… Maybe some people have more coinfections or more complex coinfections.
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
Or maybe I’m misunderstanding. I think I read enough for the night. Lol. 🙂
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
All food for thought. I think it is more complex than I will ever be able to wrap my head around. There are theories (I actually think it’s more proven than a theory but I can’t cite the study so I just will stick with theory) that imply that some of these infections actually disable the immune system. My husband has/had RA and the doc did a lot of testing in 2008. In those tests it showed he had no antibodies for infection, past or present. The doc just shrugged off and said, “that’s unusual, you can’t get to be this old and not have had SOMETHING.” So, in 2015, he got an infection that would not heal, after demanding that the doctor order the IGG testing, it showed that my husband has an immune deficiency disorder. These disorders generally come out in childhood, yet this was happening when my husband was 57. But because he doesn’t produce antibodies, no antibody test could be effective at showing which infection he might have.
Anyway, just food for thought. I think that the concept of only treating culture Proven infections is foolish and short sighted. I don’t see eye to eye with most infectious disease doctors.
Cheryl
Yes. This always gave me hope that as I felt better I would lose my factor. This has not happened. Whether or not it started with Lyme….it is mine to keep now. Horowitz believes this and so does the Lyme doctor in DC who I cannot remember his name now. But he believed if you did not have an Anti CCP that you had Lyme instead and that the factor would normalize after treatment. Hasn’t happened. But I am feeling okay. But I also know that this antibody is damaging my tissues. This rogue antibody isn’t going around saying excuse me excuse me to my tissues. It is there to destroy. I just try to not think about it. Horowitz says if you have even one of these certain bands to include the 18 23 31 34 39 83 and 93….That Lyme very well could be your problem. I had all of these except for one.
https://www.ncbi.nlm.nih.gov/m/pubmed/3668982/
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFIn the Buhner books, he makes references to bacteria hijacking our own immune system and using it against us.
Yes, I agree there is too much emphasis on having to prove you have something or testing positive for certain antibodies. Its very stressful and a huge amount of treatment time can be wasted looking for the right dr that runs the right tests. Even after all the testing, how many people are really getting better?
I’m so glad I found ‘The Road Back’! My only regret was not getting started sooner. I originally thought and hoped my problems were only hormonal or thyroid and that was causing the initially hand swelling.
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
It’s all very concerning. I want to share a story that I think illuminated the problem.
Last year, my husband (RA dx 2008 -completely resolved with AP therapy), who has primary immune deficiency, and he is post organ transplant, therefore on immune suppression medications, was having cyclical severe bladder pain issues. These were the curled up in fetal position type of pain episodes. They did a scope and saw massive inflammation. They did a biopsy and nothing cultured. His infectious disease doctors refused to treat if there was no identified pathogen.
During this time, Maz found one of Dr. Brown’s writings which spoke about UTI issues in rheumatic patients. I then proceeded to beg his ID doctors to treat… Nope. The painful debilitating episodes continued.
I then decided to take things into my own hands and get him antibiotic treatment. The issue resolved and has not returned.
The punch line of this story… A month or so later we saw his Immunologist and told that doc what we had done (started doxycycline), and that doctor said, “I am glad you did that because most of the time these infections are mycoplasma and mycoplasma usually will not grow in culture.”
I replied, “well I know that, and you know that, but why don’t the infectious disease doctors know this?” He didn’t have an answer.
The thing is, mycoplasma is very difficult to culture. A negative culture does NOT mean there is no pathogen. And with some of these pathogens being able to affect the immune system, you cannot always rely on the antibody tests. And with PCR, that test is very specific, you may have one strain that the PCR won’t pick up.
I think if there are clinical signs, such as the massive inflammation in my husband’s bladder, the patient should be treated. Clinical symptoms > lab tests.
Ok, putting my soapbox away now.
Cheryl
How horrible! There are way too many stories like this. Its so frustrating. No wonder so many patients feel the needs to take matters in their own hands. I don’t understand the stubborness at times. You did the right thing!
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
Yes, that’s exactly what we did 13 years ago for my daughter. The rheumatologist that diagnosed her offered no treatment and no hope. I turned to the internet and found RBF. I asked that doctor if he would prescribe minocycline, he said, “No! It’s a hoax!”
We flew to Boston, she started AP, and the rest is history.
Luck20, I truly hope that you (or one of your doctors) discovers what you need to heal.
Cheryl
Yes, I heard antibiotics don’t work either a couple times… Luckily I’m stubborn, and after much research realized its a minor, minor risk with a huge potential payoff. Sure enough, I’ve done a huge ‘U’ turn and am getting better all the time. I’m just waiting for the collagen to finish breaking down in my hands and to get all my energy back. I’ve seen so much progress and feel so much better!
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
Glad you are seeing improvement. My younger daughter is on almost the same protocol as you are taking. She started antibiotics the day I told her that I saw linear scleroderma on her forehead. So far don’t think there has been any improvement, and possibly a little worsening. I just hope it works as well for #2 as it did for #1.
Cheryl
Me too Cheryl, but I’m sure with all your knowledge and experience it doesn’t stand a chance.
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
The truth is, in my opinion, the biggest stress about undertaking an AP protocol is finding a doc to work with to RX the antibiotics. 13 years ago we flew to Boston just to get an RX of minocin. From collaboration on this forum, patients can see the protocols used by all of the most experienced doctors. The best think about facing this a second time is that I already knew the AP doctors and had easy access for AP treatment. It really angers me how far patients have to go to access this relatively low risk protocol.
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