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Hi everyone,
Just got back from an appointment with my LLMD. Apparently I have the 04 genetic marker for autoimmune Lyme. (and likely what triggered my positive RF factor) When those of us with this marker contract Lyme, our cells generate a protein that looks similar to the Lyme bug causing our immune system to attack not only the Lyme but our mimicking cells as well. This could be one reason why it takes some of us longer to heal than those who are able to take a 10 day course of doxy and get better. So she's putting me on an antibiotic 'holiday' to see if the Lyme is 'dead.' If it is, I'll be able to make a full recovery in 1-4 years, depending on how quickly my immune system decides to stop making Lyme-like proteins…if I get worse, its another round of antibiotic fun-ness. She wants to start vit. D, vit. C, omega 3's, and other supplements to help my body eliminate the free radicals quicker.
Anyways, has anyone else heard of this genetic marker? Has anyone's doctors discussed this topic or something similar with them? I can't seem to find anything on the 'net about it so I'm putting my faith into her expertise! (She's an excellent doctor and has been wonderful about helping turn this RA around!)
RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID
I've not heard of this; sounds interesting; please keep us posted on what you learn.
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
I don't know anything about this, frhorngal, but you can try asking the people over at Lymenet.
http://flash.lymenet.org/scripts/ultimatebb.cgi
This board has thousands of members, and many of them spend their lives researching Lyme, so if it were a real thing (which I'm sure it is if you LLMD told you), then someone there will know about it and hopefully be able to provide you more info.
[user=414]frhorngal[/user] wrote:
Just got back from an appointment with my LLMD. Apparently I have the 04 genetic marker for autoimmune Lyme. (and likely what triggered my positive RF factor) When those of us with this marker contract Lyme, our cells generate a protein that looks similar to the Lyme bug causing our immune system to attack not only the Lyme but our mimicking cells as well. This could be one reason why it takes some of us longer to heal than those who are able to take a 10 day course of doxy and get better. So she's putting me on an antibiotic 'holiday' to see if the Lyme is 'dead.' If it is, I'll be able to make a full recovery in 1-4 years, depending on how quickly my immune system decides to stop making Lyme-like proteins…if I get worse, its another round of antibiotic fun-ness. She wants to start vit. D, vit. C, omega 3's, and other supplements to help my body eliminate the free radicals quicker.
Anyways, has anyone else heard of this genetic marker? Has anyone's doctors discussed this topic or something similar with them? I can't seem to find anything on the 'net about it so I'm putting my faith into her expertise! (She's an excellent doctor and has been wonderful about helping turn this RA around!)
Hi Frhorngal,
I haven't heard of the “04 genetic marker for autoimmune Lyme” either, but I have a suspicion it might be a variant of the HLA DRB1 gene. Here is a study by the “anti-christ” :angry: of chronic Lyme disease. This Yale guy was on the 2006 IDSA panel and has been denying chronic Lyme since the beginning of time.
Autoimmune Mechanisms in Antibiotic Treatment-Resistant Lyme Arthritis
Allen C. Steeref1, Dawn Gross, Abbie L. Meyer and Brigitte T. Huber
You can read more about his horrendous research legacy in Pam Weintraub's book, “Cure Unknown – Behind the Lyme Epidemic.”
What Dr S of Yale is talking about in his study re: “treatment resistent Lyme arthritis” is the HLA-DRB1*0401 gene variant is what causes persistent Lyme arthritis due to molecular mimickry and that further treatment with antibiotics is useless. Note that the gene variant includes the “04” designation above. I'm wondering if this might be what your LLMD is talking about?
He says,
“We propose a model of molecular mimicry affecting genetically susceptible individuals to explain this treatment-resistant course. The majority of patients with treatment-resistant Lyme arthritis have HLA-DRB1*0401 or related alleles, and the severity and duration of their arthritis correlate with cellular and humoral immune responses to outer-surface protein A OspA) of the spirochete.”
Interestingly, OspA (outer surface protein A) is considered to be one of the most virulant strains of borreliosis and was removed from the standard Lyme tests when these guys were coming up with the Lyme vaccine (that actually caused autoimmune diseases and Lyme arthritis – see http://www.lymediseaseassociation.org/Vaccine_LYMERIXMeeting.html)! They removed the band that detects OspA from the tests and now some of the sickest people with chronic Lyme are being completely overlooked (Band 31 of the WB done by IGeneX). You can also read a little about this guy's “legacy” here:
http://lymecryme.com/rich_text_17.html
I don't know if this is the genetic marker your LLMD is talking about, but if it is, then I would be very dubious about coming off antibiotic therapy for Lyme. That would be a very personal choice on my part, but is something you will need to decide for yourself when you figure this out.
Unfortunately, Lyme is never “dead.” It just goes dormant for periods in its cystic form. If we're lucky enough and our immune system is strong enough, then it might just stay that way for the rest of our lives. Personally, though, I wouldn't risk taking an antibiotic holiday until all symptoms were gone and all blood markers were normalised for a good few months. Even then, with RA, I'd probably remain on a low maintenance dose for many years, if not for life.
It's all a bit of a crapshoot, I'm afraid, and as patients we have to really do the research and figure this whole mess out. Different LLMDs will have different approaches. Unfortunately, the solid answers are not there for any of us just yet, so we have to go with our gut instincts much of the time. My gut is telling me that I was so severe that I don't want to go back to that dark, horrible place. I'm getting better on antibiotic therapy, so my choice would be to stick with it. I appreciate that your situation may be very different, though, Frhorngal, as no two Lymies are alike. 😉
I wish you all the very best in making this decision. If you come up with an answer to the 04 gene, I'd really be interested to know if it was the HLA-DRB1*0401 gene that your LLMD was talking about. Thanks!
Peace, Maz
What you describe is what my doctor did. I was treated for lyme for 16 months. I do not recall her discussing genetic marker but the cells that look similar to lyme and mimicking cells I definitely remember her discussing that. She put me on the supplements you mentioned at the beginning and I am still on them today. Also on calcuium, magnesium, flaxseed oil, 14 billion probiotics and a multi-vitamin. I did an antibiotic holiday for about 4-6 weeks and then went back on doxy and riphapin (sp.) which worked well for me. I have been off antibiotics since the end of Nov. 2008 started July, 2007
Wow! Interesting and conflicting information. Guess the battle is still on.
Maz, I will ask her about that specific marker. I am curious to hear her answer.
Joylee, did you notice a return in symptoms when you stopped the antibiotics? I feel stiff but not pain like I used to.
RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID
Yes my symptoms did return. I had neck stiffness, upper back pain, neuropathy, night sweats, could not get to sleep, extreme foggy thinking, depression, menstral cycle/hormone levels out of wack. My sense of well being was shot in every way imaginable. You don't know you have a “sense of well being” until you loose it.
Very interesting…have you gone back on antibiotics? My LLMD gave me a prescription for minocycline for me to play with the dosing on if I started to feel symptoms creeping back up. I think I may start that in another week or so…Right now I'm trying to heal my gut and get that piece of the puzzle worked out.
RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID
Yes I did go back on antiobiotics. I have been off since Thanksgiving of 2008. During the last few months of my treatment my dr. prescribed doxy 150 mg, clarithromycin 500 mg, metronidazole 250 mg and rifampin 150 mg. She had me play with the combination ended up with the doxy and rifampin working best. 1 week of that combo and I noticed great improvement (all of the doses were 2x per day) Also you are trying to heal your gut are you on probiotics? I have been taking since the beginning probiotics she recommended Garden of Life Primal Defense Ultra Probiotic Formula 2 x per day. I took them on empty stomach or almost empty separate from the antibiotics. From my own experience I think you should be on the antibiotics with the supplements and proibotics until you are symptom free. As I mentioned before I did the antibiotic holiday but that was more to settle my mind thinking the antibiotics were not working but I know now they saved me.
Also I was looking back through my daily log of symptoms and I did have joint pain I guess somethings I have tried to forget 🙂
I am on probiotics…Pharmax MindLinx. It's a special blend designed to break down dairy and gluten (I've been gluten free for 2 years) but it also helps with my grain intolerances. I notice a HUGE difference when I don't take them. I would often take them right before bed when I was taking huge doses of antibiotics. I think I've just been in a 'kill kill kill' phase and now need to be in a nurturing healing phase for a bit. I felt that I had hit a wall with my current abx treatment and needed to let my immune system take over for a bit, hence the abx holiday.
RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID
[user=414]frhorngal[/user] wrote:
I am on probiotics…Pharmax MindLinx. It's a special blend designed to break down dairy and gluten (I've been gluten free for 2 years) but it also helps with my grain intolerances. I notice a HUGE difference when I don't take them. I would often take them right before bed when I was taking huge doses of antibiotics. I think I've just been in a 'kill kill kill' phase and now need to be in a nurturing healing phase for a bit. I felt that I had hit a wall with my current abx treatment and needed to let my immune system take over for a bit, hence the abx holiday.
I certainly understand. I remember reading that it is best not to take the antibiotics and probiotics together. I always took them separately.
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