Advise please

[Anonymous]

I have been on this forum for a while, but this time I am asking your advise.
I was diagnosed with RA 20+ years ago and the same month they diagnosed asthma /never had it before/ and hypothyroidism. I have tried I think everything. I had a severe eczema on all my body just a few days after I started Arava. My rheumatologist’s last “bright” idea was Humira, shortly after which I had pneumonia twice. It was the third and fourth time, because I had one before using 20mg of Methotraxate. The last time I nearly died. Many times they were putting me on Prednisolone. One day in December I could not stand up in the morning. It took me half an hour to reach a bathroom with the help of my family. A high dose of Prednisolone again. I had enough. Accidentally I found you on internet and made an appointment to AP doctor for January. From January I started a diet – no gluten, no dairy, no sugar and I still keep it.
On the 10th February I started ABX: Klacid /Clarithromycin/ 1/2 250 mg MON/THU, on 27th February Biaxsig /Roxithromycin/ 1/2 150mg MO/THU, from 6th March Amoxil 250mg/5 ml 1/2 teaspoon MON/THU. That time I was on 15mg of Methotrexate and the doctor told me to start reducing it from 15th March. Interesting, after one month on a diet, but still before antibiotics, I improved, felt better and my blood results were better. After one month on ABX it was worse, two months on ABX even more worse. I had frequent visits to AP doctor, every month or more often, but the pain was bigger and bigger. I asked the doctor some times to prescribe Mino for me, but I was told that there are better antibiotics these days.
When my ESR reached 83 /norm up to 20/ and CRP 71.4 /norm up to 10/ and I walked with a big pain and my AP doctor started to talk about Humira and testing Humira on VEGA machine, I decided to leave her. I sent an Email to Dr S. and he advised me to find a doctor who would prescribe Mino for me and to stop other antibiotics. So I started Minomycin 100mg twice a day everyday. It was too much for my stomach, so after 2 weeks I was on 100mg everyday. After two months on Mino I felt better and my blood test improved – ESR was 29!!! and CRP 53, but after four months on Mino it was worse again and my blood tests looked worse – ESR 52 and CRP 60. Now I take: Mino 100mg everyday, 1 mg Prednisolone/5 mg started on 17th December and gradually reduced/ , 12.5 mg Methotraxate a week, Naprosyn 500mg. I am in pain. My first steps in the morning are difficult. After I take my pills and wait 1-2 hours it is a little bit better, but I cannot do many things, like I used to do. I was very active before. My knees are the biggest problem, but feet, hands, elbows and shoulders also. Now it feels like it is worse everyday. I have noticed that I have a darker phlegm in the morning, so maybe there is an infection in my lungs. I am with a doctor who does not know anything about AP protocol. I don’t know if I should start another antibiotic or LDN or what to do. So far I have been on Mino for 4.5 months. Please help me if you have any suggestions. I know that I don’t want to go back to those horrible medications.
Linda L.

[enzed]

I’m sorry you’re suffering so much Linda. 18 months ago I contacted Dr S in Iowa (through this forum) and he has given me great advice regarding Mino and Doxy dosages etc. I hope you get the advice you need and start improving soon. I had a rough time the first 6 months on AP but everyone seems to. Far wiser and more knowledgable heads than mine on this forum when it comes to AP and RA drugs.

[Maz]

Hi Linda,

You really have had a rough start and I can relate to how you’re feeling in terms of how it was for me at the outset with degree of body wide pain.

We’re all just patients here, so can’t offer medical advice, but just going by what you’re describing, it sounds like it might be building hypersensitivity, Linda. When there is a lot of inflam to start, a daily dosing schedule can increase the circulating antigen till it builds up and the body is unable to handle it. I can email or PM you the transcript of Dr. Brown talking about this and you can also read about hypersensitivity in the book, if you have a copy. Let me know. He talks about what he would do in those situations, which was basically to give the patient a washout period and then re-start at a lower or same dose. He also used anti-histamines and a few other methods to reduce the bacterial allergy symptoms.

With the lung issues, wondering if you might be dealing with m. pneumonia or c. pneumonia…have you been tested for these? Also, what methods are you using to detox?

[Anonymous]

Thank you Enzed, Maz.
I have Dr Brown’s book, so I will read it again, but please send his transcript to me as well. Regarding m.pneumonia or c.pneumonia – everytime I had pneumonia in the past they made an X-ray only. Can I check it now once I take Mino? How is it tested? It doesn’t feel now like pneumonia, because I can breathe deeply in. I have heard about walking pneumonia, so you can live with it, work and do other things not knowing what it is. Detox – mainly lemon/oil drink once or twice a week /should I do it more often? Is it not too much of acid?/ I try eating more fruits and vegies. Apart from that I don’t do anything. I have checked PH of my saliva and it is always acidic. Very often I feel that I have taken too many medications, too many toxins. Maybe all that is too much. I know that my immune system is low, because when I drink something cold from the fridge or go out and the weather is cold and windy, a following day my throat is sore and my voice is changed. But I haven’t had a flue for a long time. Thank you for listening to me.
Linda L.

[Maz]

@Linda L wrote:

Thank you Enzed, Maz.
I have Dr Brown’s book, so I will read it again, but please send his transcript to me as well. Regarding m.pneumonia or c.pneumonia – everytime I had pneumonia in the past they made an X-ray only. Can I check it now once I take Mino? How is it tested? It doesn’t feel now like pneumonia, because I can breathe deeply in. I have heard about walking pneumonia, so you can live with it, work and do other things not knowing what it is. Detox – mainly lemon/oil drink once or twice a week /should I do it more often? Is it not too much of acid?/ I try eating more fruits and vegies. Apart from that I don’t do anything. I have checked PH of my saliva and it is always acidic. Very often I feel that I have taken too many medications, too many toxins. Maybe all that is too much. I know that my immune system is low, because when I drink something cold from the fridge or go out and the weather is cold and windy, a following day my throat is sore and my voice is changed. But I haven’t had a flue for a long time. Thank you for listening to me.
Linda L.

Hi Linda,

Have PM’d you the Dr. Brown Hypersensitivity transcript. Just click up top beside your User Control Panel where it will say (1 new message).

If you click on my Personal Progress thread (link in my signature line) the last post includes a list of detox methods I’ve used and found helpful. Each person is different and some you may want to run by your doc before trying. The lemon/olive oil detox drink is surprisingly very alkaline, so not a problem for frequent use. The following link has been posted here a number of times by others, but thought you might like to read through it:

http://www.keephopealive.org/lemondrk.html

There are various labs for mycoplasma testing. If PCR testing is run, it’s best to be off antibiotics for a month (antibody testing doesn’t require this), but I’d suggest emailing Dr. S. to ask him which lab he is now using for mycoplasma and chlamydia testing since TARCI (the lab Dr. Brown used) took down their website at http://www.tarci.net. If you would like Dr.S’s contact info, I’d be happy to send this to you – he is the doc in Iowa who trained under Dr. Brown, is now semi-retired, but very kind to answer patients questions and consult with local docs on the treatment. This was the preferred lab, but there are others:

[PhilC]

Hi Linda,

Are you taking Minomycin capsules or tablets?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Anonymous]

Maz,
Thank you for your advise and the excellent links. I didn’t see them before. I am in Australia, so I am not sure if the tests should be sent over there or can be done here. I will try to show the transcript to the doctor who has prescribed Mino for me, but it’s not easy.
Phil,
I take 50mg tablets by Aspen. Thank you.

[Maz]

@Linda L wrote:

I didn’t see them before. I am in Australia, so I am not sure if the tests should be sent over there or can be done here. I will try to show the transcript to the doctor who has prescribed Mino for me, but it’s not easy.

Linda, as you’re in Auz (sorry, didn’t realize), Lynnie may be able to provide info on mycoplasma testing there for you.

[lynnie_sydney]

Linda
This is one lab that’s well recognised by the Lyme community here and they do test for mycoplasma:

http://www.australianbiologics.com.au

If you are now with a Doctor who doesn’t understand AP, I wonder if it might be time to look for another one? I seem to remember you left the one you were seeing? Happy to re-send you lists if you PM me.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Anonymous]

Maz, Lynnie, thank you.
I have contacted Australian Biologics and they make tests for Mycoplasma pneumoniae, Mycoplasma fermentans and Chlamydia pneumonia. They’ve told me I must be 6 weeks without antibiotics. That’s long. Should I take this road back?
Linda L.

[Maz]

@Linda L wrote:

Maz, Lynnie, thank you.
I have contacted Australian Biologics and they make tests for Mycoplasma pneumoniae, Mycoplasma fermentans and Chlamydia pneumonia. They’ve told me I must be 6 weeks without antibiotics. That’s long. Should I take this road back?
Linda L.

Hi Linda,

Six weeks isn’t a long time in the grad scheme of things with AP treatment, which can take 2 to 5 years for sizeable gains and remission to be reached. It’s pretty much an individual choice whether or not to be tested, but the bottom line is this:

1. Here in the US, folks get tested mostly in order to get IV clindamycin coded for infection for insurance purposes. However knowing if one is dealing with chlamydia infection, for instance, should change the landscape in terms of approach to treatment.

2. That said, unless a person is going to a doc who supports the therapy, then they’re not likely to get help treating for an infectious cause anyway, unless they have an acute walking pneumonia or some other acute infection. Testing positive on IgG for past infections is meaningless to traditional docs who just see it as antibody to an infection that is long gone.

3. Some people just like to see some evidence of infection before starting treatment with AP. This wasn’t how Brown saw it, though…he felt all rheumatic diseases had an infectious component, whether the tests were positive or not and he would treat based on his clinical judgment and making an assessment of the patient’s history. E.g. if a person’s strep titers were negative but they had a strong history of strep, he would still treat for strep. We know today that many infections are potential offenders in rheumatic diseases and are (a) immunosuppressive and (b) pleomorphic (shape-shifting to elude immune system), changing up their outer surface proteins and (c) can be buried within biofilms. Strep, for instance, has not become resistant to penicillin or azithromycin, but this is not necessarily the case when it’s hidden behind other infections in biofilm.

4. Brown would test for the common infections he felt were behind rheumatic diseases, but he also wrote a full chapter on Lyme disease, which was a newly identified infection in the US at that time (not a new infection, just found in the US), saying it could also be a contender and required other types of treatments and dosing schedules. The purpose of testing for common offenders was to find a baseline titre of an infection and to watch that titre go down as the person recovered. This said, people can become re-infected over and over and Brown was a physician-researcher (looking for data to prove his hypothesis), so it makes little sense today to spend money on a bunch of testing unless #1 (above) is the goal. Not only this, we also now know that some infections may appear negative or inactive while in latency (e.g. TB or Lyme), but re-emerge later when the immune system has become compromised. So, testing, over and over, to look for negative titres is probably not worth the paper it’s written on.

Hope this hasn’t confused the issue, Linda, but as Lynnie said above, it makes much more sense to go see an experienced doctor who adheres to infectious theory, will assess for infections based on patient history and treat accordingly, but it really depends on what you decide after reading all the material on the main site, in the book and in emerging research, as to whether it makes sense to test or not and what you feel the purpose for such a baseline test might be.

By the way, do you know if you were checked for TB in your initial rheumatic work-up or any time thereafter? Sounds like you only had X-rays and no labs for infections with previous bouts of lung infections? It’s surprising how often TB testing is overlooked in an initial work-up.

[Anonymous]

Thank you Maz. It is confusing. I have never been tested for TB.
Linda L.

[PhilC]

Hi Linda,

A typical starting dose for someone with RA is 100 mg every other day or three times a week. Most people just take it on Monday, Wednesday, and Friday (100 mg MWF). However, even that can be too high of a dose for some people, so a more cautious approach would be to start at 50 mg MWF. Some people may need to lower the dose even further, to 25 mg MWF. An even lower dose could be used, if necessary (see below).

From the “Historical Protocol”:

If the medication tends to aggravate the condition, it is spaced differently, maybe to once a week or twice a week, and gradually increased to the M-W-F dosage. Some patients are so highly sensitized to drugs that they can only tolerate minocycline or doxycycline 25-50 mg. once every two weeks or even once a month, but with continued titration of the dosage, it is possible to work up to the optimum standard dosage of minocycline or doxycycline 100 mg. once or twice daily, Monday, Wednesday and Friday without flaring the disease.

See: Severe or Long-standing Disease

See also: How I slowly increased my dose of minocycline

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Anonymous]

Phil, thank you. So I will try. From Monday I will start taking 50mg M/W/F. Also I have started lemon/oil detox everyday.
Linda L.

[Maz]

@Linda L wrote:

Thank you Maz. It is confusing. I have never been tested for TB.
Linda L.

Hi Linda,

It’s pretty unusual that the prescribing doctor didn’t test for TB before being prescribed Humira. It’s actually a warning on the Humira packaging insert and is supposed to be tested as a matter of routine for rheumatics at their initial work-up and who are prescribed anything immunosuppressive. 🙁

https://www.humira.com/

“You should discuss the potential benefits and risks of HUMIRA with your doctor. HUMIRA is a TNF blocker medicine that can lower the ability of your immune system to fight infections. You should not start taking HUMIRA if you have any kind of infection unless your doctor says it is okay.”

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