WHAT SHOULD I DO

[val – sa]

I have been on minomycine for nearly 4 months, the first 3 weeks were brilliant, back to normal. Since then I have got progressively worse. There have been days where I cannot walk or even stand up – this can last a couple of days and then disappear as quickly as it came. I have got ra in my jaw – dentist not happy. My hands and wrists are bad all the time – can only work a couple of hours a day if lucky so my business is grinding to a halt. Incredible fatigue and loads of pain every day. I take minomycin 2x50mg M,W,F., probiotic every day, AIM Barley Life, calcium and vitamin c. I take mersyndol forte at night and digesic throughout the day. Blood tests are getting worse – ESR 60, CRP 16 and RF 3700. Prior to going onto minomycine I was on methatraxate, arava, plaquenil – rheumy taken me off those drugs because of serious side effects and was not prepared to try biologics. My doc is looking after me now but has little knowledge of antibiotic therapy. I live on a farm and before r.a. was supremely fit, worked long hours and was able to look after and ride my horses – all gone now. It is hard not to get discouraged – has anyone got any suggestions.

[mariemcminn]

First of all, I’m sorry you’re in such pain. 😐 I’m still early in my treatment and have noticed a lot of progress, but my wrists still hurt a lot. Have you been tested for or researched possible food sensitivities? My symptoms are much, much worse when I eat something I’m sensitive to. As a result, I’ve developed leaky gut, so I’m taking supplements to heal that so I don’t develop more food sensitivities. Also, if you don’t want to do the expensive food sensitivity testing, you can try an elimination diet and see which foods you react to. There’s a lot of trial and error here, but working with a naturopath or holistic doctor, maybe even an orthomolecular or functional medicine doctor, might shed some light.

Best to your healing journey–
Marie

[Maz]

@val – sa wrote:

Blood tests are getting worse – ESR 60, CRP 16 and RF 3700. Prior to going onto minomycine I was on methatraxate, arava, plaquenil – rheumy taken me off those drugs because of serious side effects and was not prepared to try biologics.

Hi Val-Sa,

So sorry to hear you’re in so much pain. I was wondering about the timeline of when you were withdrawn from all your conventional meds – mtx, arava and plaquenil? Did you just stop them cold turkey prior to starting AP? If so, this could be the result of both drug rebound, which can take a few months to kick in as the drugs wash out of the body, as well as the beginning of delayed herxing as your immune system begins to kick in again.

Tetras are bacteriostatic and so they require a fully functioning immune system to get full benefit from their anti-microbial props at such low doses.

http://en.wikipedia.org/wiki/Bacteriostatic

So, as immune function begins to wake up again, it is starting to recognize and go after those bugs disabled by the minomycin.

It can be terribly hard for patients who go cold turkey on their immune-suppressive meds to begin AP (antibiotic protocols), which is why many will remain on their usual drugs, stabilize on AP, and then gradually wean from the other drugs, one at a time. With too much die-off occuring, even on such low doses, this might be the result of increasing hypersensitivity. What Brown would do in these sort of instances would be to do a “wash-out” period of a few days to a week and then re-start the therapy.

Detoxing during this early period (and really as an ongoing life-style) is quite important to help the body dispose of these circulating antigens (toxins released by dying bugs). It’s also important to keep inflam as low as possible during this period, because too much inflam and swelling will prevent the abx from reaching their targets in the joint tissues. So, some help might be needed to keep this inflam down. Brown would use small amounts of pred during herxing (5 to 10mg max), for just short periods of time. Alternatively, some type of NSAID used temporarily might be needed to help reduce the inflam.

There are some suggestions at this link about how to go about detoxing, but others here might be able to share what they do…in fact, Ildiko posted last week about this, asking what others did to detox:

http://roadback.org/index.cfm/fuseaction/education.display/display_id/124.html

viewtopic.php?f=1&t=5971&hilit=ildiko

Just some fellow patient thoughts, Val-sa…hope others will chime in for you with their insights, too. Do hope you feel better soon. I will send you a transcript of a talk Dr. Brown gave on Hypersensitivity with his recommendations in a PM (just look to top of page and click where it will say (1 new message) ).

[Joe M]

HI Val,

Your symptoms sounds much like my wife’s. This is severe RA and not to be taken lightly. My suggestion is to do what we decided to do after mino did not work for us. Get a two-three week tapering dose of prednisone to knock out this flare and start Enbrel or Humira at the same time. My wife did this and has been in remission for four years now. What have you got to lose?

Joe

[val – sa]

Thankyou all for your help. Forgot to say that I am on a gluten free, dairy free, raw food diet. See a good naturopath and also detoxing. Used to enjoy a glass of white wine and hadn’t had any for months and decided a glass with my meal would be nice. Soon after drinking the wine I had a scratchy, tight throat and a dry hacking cough – mmmmm – so no more wine. I have COPD (chronic obstructive pulmonary disease) as well as the r.a. I’ve never had eczema in my life and since r.a. got worse I now have eczema – any connection?? Also getting migraine headaches again. My rheumy took me off all drugs immediately because I had such serious side effects. He actually said that they could have killed me. I had been on prednisone (high dose) for 12 months and that was tapered off slowly. My r.a blew out of control after I got community acquired pneumonia in Bulgaria last April (do not get sick there!!!!). Thankfully QANTAS got me back quickly to the UK for treatment. My rheumy will not let me go back on conventional drugs and will not prescribe biologics because of my existing problems. So it’s the antibiotics for me and I have to try and be patient I guess, but right now I hate the way my life is.

[lynnie_sydney]

val-sa – I wonder if CPn (Chlamydia Pneumoniae)could be a possibility as part of what you are now delaing with. There certainly seems to be some evidence of a possible mix in your pathogen load. Not sure where you are in the U.K. but wonder if Breakspear Clinic in Hemel Hempstead is an option for you to look at. They do have some testing procedures there and there are a few people who visit this Forum who see docs there. You might also consider visiting the EuroLyme site (EuroLyme@yahoogroups.com) for some input and possibly alternatives for doctors you could consult. Lyme and its co-infections are also possibilities that came up for me with what you’ve described. Another good resource (for docs and information) is the CPn site http://www.cpnhelp.org.
By the way, it is not uncommon for people with chronic diseases (and most especially where there is a mix of pathogens) to develop multiple food/chemical sensitivities. It could be the sulphites in the wine (sulphur dioxide) that caused your reaction. In which case, you would also need to look at eliminating foods high in sulphites (you can look up online at which of those are the worst offenders -delicatessan meats and dried fruit are two of them).
I hope this hasnt confused you more. It certainly sounds like some more detective work is in order for you and I hope you get some answers soon. Lynnie

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)

[Krys]

Dear Val-sa,
I’m so very sorry you are in such great pain and your life is so greatly affected by it. You’ve received some great advice so far. It is not easy to look into and incorporate all of it when we are in pain, discouraged and maybe also overwhelmed. I believe you will greatly benefit from following the advice, I’m sending you love and prayers!
Maz mentioned anti-inflamatories and in some past threads Tiffany shared how Turmeric helps her keep the pain at bay, how magnesium oil makes a big difference. Gord in a still active thread shares how magnesium oil brought about miraculous well-being for him. In some past threads people talk about systemic enzymes to help with inflammation. I used systemic enzymes for a few weeks to help with inflammation of tendons. My LLMD suggested InflammaQuell. It helped with the tendons but as I am allergic to some of the ingredients it possibly (together with bio-toxins released by massive die-off and my body’s inability to get rid of them) resulted with quite severe inflammation of pancreas and the heart. I stopped using it. Intense detox and tweaking the protocol helped bring the inflammation down. I still use Turmeric, Ginger, Cayenne pepper in cooking and occasionally the above + Bromelain, Papain and Yucca in capsule form, and when joint inflammations (for me mostly a food reaction) threaten to get out of hand, I take a systemic enzyme just once or twice. It is working for me, but I never had the degree if inflammation you have. Many people on the board mention other systemic enzymes, possibly superior to what I was taking.
I’d like to share something that keeps surprising me with its very strong, for me, anti-inflammatory effect. I notice that each time I eat green onions, mustard greens, and to a lesser extent cucumber and raw onion, my fingers, no matter how swollen and stiff they were at the moment, immediately turn completely normal!!!
May your problems be a thing of the past very soon. Warm wishes, Krys

[gordbentley]

you work on a farm, this makes me think of two possible connections. lyme disease and heavy metals and pesticides, you may want to explore these paths as heavy metals (particularly lead) was a major contribution to the development of my disease and treatment for chelating the lead provided me with substantial relief in the fatigue department, pesticides and heavy metals are all over farms because of old lead water pipes, lead solder in the water pipes and pesticides, insecticides and all that stuff being used in the agricultural world. it may not be your farm that sprays that stuff but it could be the one next to you!! And krys is right the magnesium oil spray has been the tip of the hat for my own personal treatment. it got rid of my last remaining symptom of sore leg muscles and possible neuropathy due to poor leg circulation. I do hope you get to feeling better soon, dont be discouraged as it can take time for the mino to kick in especially if your immune system is compromised by some other unknown entity which i would highly suggest exploring with the assistance of a reputable naturopath. hope I helped you on your journeys! 😀

[Parisa]

Val,

I think you have received some very good advice here and just wanted to give you some encouragement. I think you are still very early days in your treatment especially considering the fact that it appears that you had to quit the immunosuppressants cold turkey. Hang in there as what appears to be hopeless now can be turned around. It’s a matter of peeling the onion and finding all the culprits of what is causing your condition (Lyme, c. pneumonia, pesticides).

[Author]

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