Lupus since 3 years ago

[ivan]

Hi.
My name is Ivan and i from Chihuahua Mexico with 33 years old, exactly 3 years ago, i had articulate pain in shoulders, hand and knees, the pain was increasing with the days, one day I had a fever (102.2 F) an that moment I did not take any medication, after my diagnosis (the exams were positive, ANti ANA) my doctor prescribed me, Hidroxocloroquine, Prednisone 5MG an ketoprofeno(for pain) I get much better with this drugs, but after 3 mounth the paint was variable some day the pain would not let me sleep, and it was not a normal life…

one moth before i go with the Dr. L. and he tell me that with antibiotics (Tetracicline 500mg) two capsule in the morning and two in the afternoon my condition was going to better, i feel better but not enough to say that I am healed.

My question is: This treatment is correct?
i left the Hydroxychloroquine by Doctor recomendation. It is safe?

He told me that in 4 months I would be better, and that antibiotics would cure me.
He says that I am infected by spirochetes(espiroqueta)

Thanks for taking the time to read.

Gracias!

RBFV Edit to remove full AP doctor name, as per forum guidelines, to protect doctor privacy. Thank you for understanding.

[Maz]

Hi Ivan,

You made it on the forum! Nice to see you here and hope you will feel welcome in this community of rheumatic AP (antibiotic protocol) patients. No one at this foundation can provide medical advice as we are all just patients, but we can share our experiences and resources we have found useful.

It sounds like your lupus was diagnosed by positive ANA. Did your lab also provide you with a pattern for the ANA (homogenous or speckled pattern)? The ANA test is an initial screening test, so it can help the doctor to determine what type of rheumatic disease a person is dealing with and the pattern can help to figure out which further tests should be run to confirm rheumatic disease types.

Here is a website that describes the ANA test and other tests that you can find using the search box:

Lab Tests Online – Understanding the ANA test

Did your doctor run any further lupus tests to confirm your diagnosis? e.g. double-stranded DNA antibodies?

Did Dr. L. tell you which type of spirochete he found in your tests? Was it Lyme disease (borrelia burgdorferi)? There are many kinds of spirochetes, like oral (Trepenoma denticola), stomach (Helicobacter pylori) and STD (syphilis) spirochetes, for example. The reason I am asking is because you are on a high dose of daily tetracycline, but this would be normal for Lyme disease (but not for other types of bugs, like mycoplasma, which is a slow-growing, slow-replicating bug that only needs low doses). When I first got Lyme (it triggered rheumatoid arthritis), my Lyme doctor put me on tetracycline 750mg twice a day. He also had me on two other antibiotics: clarithromycin 500mg twice daily and hydroxychloroquinine. So, I am interested to know if Dr. L. has plans to add in other antibiotics for you or if he expects you will get well on just tetracycline?

I think Dr. L. sounds very optimistic about it only taking 4 months for you to reverse your lupus. For most people who have had Lyme for a long time, it usually takes much longer and lupus patients, in general, tend to be very sensitive to the toxins that are released by the dying spirochetes, which can make you feel much worse for several months. Sometimes lupus patients find it difficult to tolerate high dose antibiotics, so if you are doing okay on your current dosing schedule, this is very fortunate!

The reason Lyme docs will use tetracycline (the first generation of tetracycline antibiotics) for Lyme is because they can use much higher doses to hit the Lyme bug and it is better tolerated than doxycycline (which can cause stomach upset) and minocycline (which can cause dizziness and nausea) in higher doses.

Hydroxychloroquinine is also used as a Lyme treatment (antimicrobial) and a lupus treatment (anti-inflammatory). So it can be useful for both things to help with pain management and to help treat the cyst forms of Lyme, but your doctor might have a special reason for stopping it. Maybe you could ask him why?

You asked, “Is the treatment correct?” Yes, for the treatment of acute Lyme it is correct, though many Lyme docs will use combination antibiotics for chronic Lyme (when a person has had it for a longer period of time) to make sure they are providing enough coverage. This is because Lyme can shape-shift (called pleomorphism)…the spirochetes can change from a spiral cell-walled form to an intracellular cell-wall-deficient form (lives inside your cells) or to dormant cystic form when it is being treated with antibiotics. If not enough treatment is given, it can also push the bugs into a biofilm, which is like a slimy protective barrier that antibiotics cannot penetrate. These pleomorphisms make it harder to treat the infection, because they are strategies that help the bug to survive and persist. Here is a video of Lyme spiral forms balling up into cysts when treated with penicillin:

Lyme Cyst Formation

Hydroxychloroquinine is believed to have some effect on the cystic forms of the Lyme spirochetes, but it also treats protozoan coinfections of Lyme, like babesiosis. So there are a couple reasons why Lyme docs will use this medication, in addition to helping with inflammation.

So, if you find you do not feel better on just tetracycline, you might have to ask Dr. L. if you can also take another antibiotic to complement the tetracycline, like hydroxychloroquinine and/or clarithromycin. These will help to target the other forms of the bug.

If you need more explanation about why and how these antibiotics work, I’d be happy to share this, but for now, hope this helps. Your response to high dose tetracycline will determine whether you need to add other antibiotics to it. I did high dose triple therapy for one year, but then changed to low dose, intermittent pulsed dosing with minocycline and azithromycin in my second year and did very well on this. For me, however, it took much longer to feel better. Very few chronic Lyme patients get well in just a few months (some do and hope that is you!) and most Lyme Literate MDs regard Lyme as a chronic, persistent infection that may take as long to treat it as a person has had the infection and sometimes longer, especially if a person’s immune system is not working well. Lyme can really harm the immune system, so it’s important to take care of the gut (daily good quality probiotics) and to learn how to detox (to get rid of bug toxins from the body). If you read this forum regularly, you will see discussions on these topics, Ivan, and you can also use the search box at the top of the forum to find past conversations on topics that you are interested in.

Bienvenida!

[ivan]

I will try to xplain as best i can, we several test applied to me some of them were ANA, ELISA, now i’m trying to find this exams, becouese only rmeneber that only examen, appears psoitive (ANA) am working on that.

My Dr. dont tell me what spirochete had found becouse this examen is very spend, only with the Dark field he determines that it is a spirochete but we do not know what type it is.

I think my doctor is doing is with trial and error, becouse he does not know what type of bacteria his patients have.

He told me that medicine Hydroxychloroquinine was bad, that it causes blindness.

My first Rheumatologist Dr. He prescribed me this medication:

*Hydroxychloroquinine 200mg one a day.
*Prednison 5mg, one a day and 1/2 in the aftermoon
*Ketoprofeno (for the pain) every 8 hours

Actually
*Prednison 2.5mg per day
*Tetrceclyn 500mg, Two in the mornings and two in the aftermoon.
*1 capsule of the Ketoprofeno per day.

With this treatment you could say that I’m better at 60%, That in 3 years of my previous treatment

I would like you to share me more information on antibiotics…

And I have a question about what relation exists lyme disease with lupus or arthritis rheumatoid because my first Drsay I have a lupus because my ana appear positive and my second Dr say: That autoimmune diseases do not exist, that this is caused by bacteria called Spirocheta.He has treated many patients with lyme disease, lupus, multiple sclerosis and healed them only with antibiotics … my second question really does the antibiotic cure them?

Thank you very much for responding so quickly

Gracias!

[Maz]

Hi Ivan,

My Dr. dont tell me what spirochete had found becouse this examen is very spend, only with the Dark field he determines that it is a spirochete but we do not know what type it is.

I think my doctor is doing is with trial and error, becouse he does not know what type of bacteria his patients have.

Okay, no problem and was just wondering if you knew what kind of spirochete. Thing is, most humans will have some type of spirochete in them, as we all have teeth and trepenoma denticola is a common oral bug. It doesn’t matter, though, because treatment will be similar and, if you find tetracycline isn’t enough, you could always ask the doc to add a second antibiotic into the mix. The difference between a healthy person and a rheumatic is that the rheumatic reacts to the bug’s toxins and a healthy person doesn’t. Dr. Brown called this, “bacterial hypersensitivity.” It’s like an allergic reaction.

He told me that medicine Hydroxychloroquinine was bad, that it causes blindness.

Well, yes and no. In the past, they used to use very high doses of plaquenil, over 1000mg and this was pretty neurotoxic. Today, the doses are a lot smaller and, with regular eye tests, blindness rarely, if ever, occurs. Most opthalmologists will tell you that they have never seen a case of blindness from plaquenil. I was pretty scared to try plaquenil, too, Ivan, but my experienced Lyme doctor reassured me about it. I’ve been on it a few times for about 5-6 months – the first time, I got ocular migraines and worried it was the plaquenil, so doc said I could stop it. Turned out, years later, I got that type of headache a couple more times and it wasn’t anything to do with plaquenil. The second time I used plaquenil, I started to get a bit of bloating and gas in my gut, but turned out that was to do with my thyroid. Third time I tried it, I was getting worse joint pain, but later learned it was due to a reaction to a beta blocker I was taking for my thyroid! It can cause some stomach upset in some people, but taken with food, this is minimized. Of course, not suggesting you take it, but as far as DMARDs go (that also have anti-microbial effects), plaquenil is pretty mild and can offer some anti-inflammatory help when starting out with antibiotic therapy. I think it’s probably safer, in the longer term, than long-term use of prednisone, which can cause adrenal atrophy and other nasty side-effects (bone loss, cataracts in the eyes, diabetes, poor wound healing, etc) or NSAIDs (non-steroidal anti-inflammatory drugs) that can cause gut harm (stomach ulcers and leaky gut).

Actually
*Prednison 2.5mg per day
*Tetrceclyn 500mg, Two in the mornings and two in the aftermoon.
*1 capsule of the Ketoprofeno per day.

With this treatment you could say that I’m better at 60%, That in 3 years of my previous treatment

This is a pretty good protocol to start, Ivan, and a very good sign that you are feeling so much better and able to tolerate the higher dose of tetracycline! Most people will feel worse at the start due to herxing (lupus patients tend to be more hypersensitive to many drugs) and herxing can be worse, the higher the inflammation when starting antibiotics.

I would like you to share me more information on antibiotics…

What kind of info are you looking for, Ivan? Can you explain what you mean – doses? types of antibiotics you can add to tetracycline? etc?

And I have a question about what relation exists lyme disease with lupus or arthritis rheumatoid because my first Drsay I have a lupus because my ana appear positive and my second Dr say: That autoimmune diseases do not exist, that this is caused by bacteria called Spirocheta.He has treated many patients with lyme disease, lupus, multiple sclerosis and healed them only with antibiotics … my second question really does the antibiotic cure them?

First question: it depends what you believe, after you get informed about your rheumatic disease and what may cause it. In my case, it was easy, because I got two bulls-eye rashes and I live in northeastern US and so I knew I had Lyme and that the joint pain that followed immediately had triggered my RA. Other people don’t always see a tick or a rash, so it can be harder to tell. There are also more bugs in the rheumatic mix than just Lyme. Lyme is immune-suppressive, so other bugs in the body can reactivate and the immune suppression from Lyme can mean new bugs can also trigger rheumatic diseases. This is because Lyme can be in the body for decades in a latent (sleeping) form and can then reawaken when a person is sick, stressed, had an accident or surgery, etc. We all have a microbiome of many trillions of bugs that live in and on us and these live in biofilm communities that can keep us well, but can also make us sick if some bugs become overgrowth. Bugs can also turn on genes that predispose us to rheumatic disease. So, really, the truth lies somewhere in the middle and is likely a combination of both theories. New microbiome studies in rheumatic disease will reveal a lot to science and should explain which bugs may be disease triggers, because right now, individual researchers have their “pet” bugs, the ones they are studying and believe to be “the one.” What is more likely is that one bug might be a trigger, but other bugs may also become opportunistic and, acting together, are causing persistence and keeping inflammation switched on.

Second question: antibiotics can “cure” acute infections, but this treatment is not described as a “cure” for rheumatic disease. It can and has put many people into long-standing and even permanent remission. Some people have been able to stop their antibiotics, but some expect to be on them for life in order to sustain their remission. A lot depends on different variables. E.g. age, strength of immunity, gender (males tend to do better), hormones, diet, life stressors, toxic exposures (lead, mercury, pesticides, paint fumes, mold, etc), new infections, etc. A person can reach remission, for example, but then needs surgery for something else, or has a car accident, gets lazy with diet and other lifestyle considerations (smoking, lack of exercise, etc), and then the bugs (which really never completely disappear, may reactivate down the road again. Once a person experiences bacterial hypersensitivity, it’s rational to think they can again (as per Brown’s theory). The goal is therefore to lower the bug load (with antibiotic therapy) and strengthen immunity to keep the zoo animals (bugs) in their cages.

Here is an incredibly interesting early study from one of the guys who is credited with investigating Lyme in CT in mid-70s (Dr. Steere, a rheumatologist).

Clinical pathologic correlations of Lyme disease by stage. Ann N Y Acad Sci. 1988;539:65-79

“The disease in some ways resembles the responses seen in lupus erythematosus such as mild cerebritis with lymphocytes and plasma cells in the leptomeninges. Lymphoplasmacytic panniculitis of Lyme disease resembles lupus profundus, both in the infiltrate and the plasma cell-blood vessel relationship. The onion skin thickened vessels of the synovia resemble the vessels of lupus spleens,…”

And, the final line in the study summary really says it all!

“All of these histologic derangements suggest immunologic damage in response to persistence of the spirochete, however few in number.”

So, even back in the late 1980s, one of the doctors, who has been credited with being a top specialist in rheumatic Lyme disease is suggesting that rheumatic diseases, like lupus, appear to manifest in an uncannily similar way to how Lyme behaves in human tissues. Also, that even a few remaining spirochetes can cause the rheumatic disease to persist. This is actually why experienced Lyme doctors will use two or three antibiotics at once, because the spirochete can shape-shift to avoid being killed by one antibiotic. These spirochetes can quickly ball up in a cyst form to resist the antibiotic, which is why cyst-busters are used. They can also wall themselves off with biofilm, which is why biofilm busters are used. They can also go intracellular (inside the patient’s cells) in a round form, so intracellular antibiotics are used (tetracycline is an intracellular antibiotic in low doses and can also kill the cell-walled form of the spirochete in higher doses).

Does this help at all, Ivan? I know it’s a lot to take in. Took me years to learn this but I had good doctors who were amazing teachers. There are two excellent books on the website – Cure Unknown and Solving the Mystery of Lyme and Chronic Disease, which are very worth reading, if you can. If you can download them from Amazon to your book reader, you can probably also use Google translate to read them in Spanish?

Other Useful Books

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