Sudden issues after 2 years – advice appreciated

[susanmary]

Hi Everyone – I just wanted some imput or advice or if anyone else has had this happen. I am also not very computer savy- SO sorry in advance.
I had very sudden onset of severe muscle spasms neck and shoulder pain in 2004 , I also had periodic but NOT constant severe hand pain. I ran the usual road of Dr,Specialist,Dr etc etc etc that so many of us here have been through. ALL my blood tests came back completely normal.
Pain was so severe I had to give up all competitive sport and eventually in 2007 I had to sell my business. I did lots and lots of research found an open minded doctor and worked my way through hundreds of protocols some helpful some not – sound familiar to most of you I am sure.
Eventually I found the Road Back site,the book and this great Forum.
I am Coeliac but have been Gluten free for 30 years well before any issues started.My diet is very good done all the usual things, nightshades, lactose etc etc
I approached my Doctor to trial AP therapy and she said if I presented her with all the information and a plan she would consider it especially as we had been down every road except heavy duty drugs which I have kept holding off on.
I had all tests recomended by the book and a few others etc and so I began.

Apart from an initial problem with yeast which I quickly got under controlby finding the correct probiotic for me -I had after 7 months and several herx made quite a bit of improvement pain wise – much to my doctors surprise and my ENNORMOUS gratituted and delight – pain went from off the wall 10 out out of 10 to about 6, I was able to limit pannadol to 2 a day which I had found basically useless and Neurofen does not agree with me very much.

I started Minomycin Feb 2014 100mg MON/WED/FRID – probiotic every day -at WEEK 59 in an attempt to get a bit more of a shift we added 250mg of Klacid again MON/WED/FRID and I had some further improvement to about a level 4 SO SO HAPPY . I still got bad days but basically I could grit my teeth and think “This Will Pass’ I stopped all pannadol.

I had been feeling really really tired from the beginning of the treatment (2o14) but took this as a great sign as I had been such a terrible sleeper from pain I assumed it was the body healing ( this in hindsight may have not been the case). Suddenly I started getting increasing pain,swelling ,joint inflamation in my hands WEEK 85 and thought an “unusual flare” but I didn’t think it could be somethig else . ANYWAY I was just about to re-visit my doctor (after having read the Dr Macpherson book for the 10th time) to see if we could tweek up my treatment or whatever- HOW IRONIC

I had my blood panels done as usual beforehand – these are the usual tests that I get done every 3-6 months for 12 years and are ridiculously always perfect 🙂 WELL they weren’t this time !!!! My liver panel had incresed from perfect to large leap – we retested for false positive they had gone up again 🙁 I added Milk thistle and they shot up to BILLIO !!!!!!!!!!!!!!!!! at week 106 I stopped all antibiotics under Drs orders.
We went through every single supplement, every food item, every liquid, EVERYTHING EVERYTHING before doing this .

The sudden onset of constant pain ( I had had flares in my hands in the “old” days but not like this) in my hands, nodules ,redness stopped completely and we are re testing every 3 weeks as the liver enzymes are very slowly coming down but UNFORTUNATELY my neck, shoulder,knee pain is coming back with a vengance and my Doctor thinks its unfortunately the antibiotics and a form of DILE.:(:(:(

Has anyone else had this happen ? I was so so grateful that I was getting a bit of normal life back. This after 2 years of protocol !

So SORRY for being drawn out. I have lots of tests done that cover a multitude of things so I could add them but would have to get partner to type it – however they were all more or less before I started AP therapy as I was being ultra careful.
I have just been re-tested and await results – my dr asked me to add 2 pannadol a day as she wants to see if they make a differnce to my bloody sensitive enzymes and if this keeps up not sure what I am to do for pain 🙁

ANYONE have this happen and then resume treatments ?? SORRY for the ramble it’s been quite a blow.
Warmest regards Susan

[Maz]

Hi Susan,

Very sorry to hear that you might have had a drug reaction. Did your prescribing doc run an ANA and SMA (smooth muscle antibody) test? With elevated liver enzymes, it just sounds a bit more like minocycline-induced hepatitis rather than drug-induced lupus. It’s only been shared here a few times, so not that common, but can occur.

http://www.ncbi.nlm.nih.gov/pubmed/20512992

And a more detailed article on the above study: http://onlinelibrary.wiley.com/store/10.1002/hep.23588/asset/23588_ftp.pdf;jsessionid=F0DF45B2B27A59336B4C92F338A88CB8.f04t03?v=1&t=inl610gr&s=dbdd26da3475c030cc0cbbcd10d635b8c7e59cea

It would suck big time, if this is what you’re experiencing, Susan, but please let us know after you get your test results. It can be a bit of a diagnosis of exclusion for doctors, ruling out other things, like real lupus or actual hepatitis or other liver issue. Thing is, you’d need to stay off most meds until the liver can heal itself. It is a very forgiving organ and can regenerate within months. Thing is, how to deal with your pain in the meantime and pred might be the only option for a bit. That or topical pain relievers that come in time released patches or creams/gels in order to help bypass the liver. Everything ultimately gets broken down by the liver but topical pain relievers are less direct than via the gut. Sounds like you’re down in Australia or New Zealand, so perhaps Lyn will have some suggestions for you in terms of what us available and liver safe.

I can think of some natural pain relievers, but you’d need to pass these by your doc to be sure they’re safe at the moment. E.g. Boswelia serrata, liposomal curcumin, bovine colostrum, vitamin C (anything antioxidative), NAC, liposomal oral glutathione, but better yet…IV pushes of glutathione. NAC is a precursor to glutathione and administered via IV for aspirin overdose in urgent care scenarios, but can be bought in oral capsule form as a supplement. As you’re dairy-free, non-denatured whey protein is likely not an option, but this, too, promotes glutathione production, as does curcumin and milk thistle.

[PhilC]

Hi Susan,

Are you taking MSM? It is known for causing (falsely) high liver enzyme readings.

Panadol (acetaminophen or paracetamol) is notorious for being hard on the liver. By itself, Panadol is likely to be OK for you. However, the combination of Panadol with the other drugs you are taking may be too much for your liver to handle. I’m not saying that’s the case, only that it should be considered since Panadol could be replaced with an NSAID like meloxicam (Mobic).

Also, with a dose of 100 mg of minocycline on MWF, you are getting almost none of the anti-inflammatory benefit of minocycline that you could be getting (on a higher dose). If you were on a higher dose of minocycline (e.g., 100 mg daily), it’s possible that you wouldn’t even need additional pain relief (except maybe occasionally). Of course, if it turns out that you have developed a sensitivity to minocycline, you will need to switch to a different antibiotic, such as doxycycline.

Phil

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

[susanmary]

Hi Maz and Phil
Thankyou both so much for your imput greatly appreciated. I thouht I would answer/reply to your thoughts suggestions Maz and follow at the end with yours Phil – and maybe I have a question or two.
Maz – yes I agree with you “IT WOULD SUCK BIG TIME” !!!:):):) that’s putting it politely by both of us:) SO I have had ANA tested a few times over the many years always comes back negative (as I said my bloods until recently show probably the healthiest sample of a woman there could be BUT we all know that does not exclude very horrible things happening luckily my doctor is on board with this).
I did have ANA retested just before starting AP in 2014 .

With dramatic rise in all liver test panels I did ask her to test for Hepatitis A B C even though I didn’t think anything would show and also Haemochromatosis just to rule out as much as we could( I do not eat hardly ANY red meat and don’t takeiron supplements but my readings are always at the higher end) so those 4 extra tests ALL were negative. QUESTION – MAZ – would having SMA and ANA tests when liver enzymes rose made any difference we didn’t re- test for ANA and have never had Smooth muscle test – but as I said had HEP A B C “Haemo” tests done.
Again Maz – tried ALL of the pain supplements you mentioned ie Boswella etc etc for months on end with no success before finally discovering AP but thankyou anyway. I have not tried Bovine Colostrum although funnily was on my list. Milk Thistle I only added after the first unusual tests came in and the ruddy readings tripled whether the milk thistle added to this or not won’t know as I stopped it 🙁 I HAVE ONE HELL OF AN UNGRATEFUL LIVER !!!!!!! I did Myers cocktails again a few years ago but they got far too expensive for me they helped a tiny bit but not enough for me to be able to justify being able to keep going. As we know these diseases for want of a better word sap all finances. I have tried all topical creams on market but no prescription type patches.
MAZ I am not dairy free – was for a few years as Coeliacs often don’t Process Dairy I was not Cassien intolerant or anything – however I now have such small amounts so am okay with supplements that have them in it .
MAZ – I have never allowed myself to go down Pred path- as I am a tiny little person and so my bone density considering how much exercise and weight training I did is not brillant – not terrible but in the Osteopinea range but then I am 57 so not unusual, and always scared off by the side effects of so many of these drugs however I also know I have to live somehow and my doc and I were discussing low doses pulsed ( like AP)- after liver results have gone no further with it “YET” I am on low dose compounded sublingual HRT – I DO not tolerate and for of Calcium supplents . Any Imput??? I could click into your first link of Mino causing liver problems but not second.

PHIL – thankyou also for ansering I have been reading posts from all of you for three or four years now and heartfelt thanks agin to everyone. Phil – I was on Pannadol before AP once Ap started to work I only allowed myself occasional Pannadol and all tests were ok . After adding Klacid I stopped all pannadol apart from flare times( and even then only 2 tablets) at week 59 and when these high tests came back at approx week 106 I hadn’t had any so probably unlikely to be pannadol. UNFORTUNATELY neurofen/advil makes me look like my poor partner has been bashing me as I bruise like Crazy and my one attempt at MOBIC burst those little blood vessels in my eye so looked like something from Buffy the Vampire Slayer – SEE Ungrateful body as there is no blood test reason that this should happen !!!!!!!!!!!!!!!!!!!!!!! SO Maz?Phil ? if I can get my levels back to normal should I re start with close monitoring ? Wouldn’t having Mino every day cause issues to arise faster ? ?ANYWAY at the moment I am trying to keep my sense of humour maybe not as successfully as I think I am. I certainly am getting some amusement from the looks on the poor blood taking girls faces as my arms are quite a picture from the blood tests – I re-assure them compared to pain issues I don’t care if they bruise me taking blood :)!

PHIL – my doctor has asked me to take 2 pannadol a day whilst not on antibiotics because she wanted to see if my liver enzymes went up even on just that tiny dose without AP.
Goodness you have put up with my ramblings – I know a lot about quite a lot of medical? alternative stuff but have been shy to post but if anyone wants any info just ask and I will answer if I can be helpful to anyone.
Yes Maz I am indeed in Australia.
Warm regards
Susan

[susanmary]

POSTSCRIPT – Phil I did MSM for 2 years before AP didn’t help so haven’t had it since starting AP – Susan

[lynnie_sydney]

Hi Susan

As Maz mentioned above, I am in Australia.

Interestingly, I had a liver crisis in 2009. My liver enzymes became alarmingly elevated (ALT, the specific one for liver) was 22 x normal. I started as if with a strange, short-term flu but then it morphed into my feeling generally ‘under the weather’ and fatigued to the point of exhaustion by about 6pm and with drenching night sweats. Conventionally, nothing showed up results-wise. Hepatitis negative,viruses etc negative. However, at the time a smooth muscle antibody test ws taken and that returned positive, which suggested auto-immune now in my liver. However, unusually, when it was tested again much later (and then subsequently) it has always come back negative.

As a side note my (conventional but very good) GP at that time told me that he never recommends people take Milk Thistle when the enzymes are so very high and there is possible liver damage.

With what is regarded as unconventional testing via a VEGA machine, my responses showed that I had developed an allergic reaction to a benzodiazepine that I was prescribed briefly for sleep issues I was having. I also subsequently tested as having become hyper-sensitive to the tetracyclines which I can no longer take.

What I did back then was to come off all antibiotics and sups for around 2 months to give my liver a break. I had lots of acupuncture also to boost my immune system – and drank a kale/umboshi plum liver detox mix daily. I was lucky in that my rheumatic symptoms didn’t flare during this time. When all was back to normal with my liver (any my tongue which was very coated and cracked), I resumed a MWF pulsed protocol of 4 antibiotics (via an AP Doc) and have had no problems with my liver since then.

However, that is my story and yours may be different and require a different approach.

If you need pain/symptom relief, then you need to talk with your doc about what is going to be the best for you right now. I would think something transdermal – or perhaps even non-drug based, like acupuncture. I have never had to go that route so I am unable to talk with any experience or knowledge in that area and I know that care will need to be taken that whatever you use doesn’t exacerbate your liver issues.

It sounds like you have been working with an open-minded and co-operative GP. That is great (and it’s what I did for the first 4.5 years I was on AP). But it may be time to consider going to see an experienced AP Doc who may be able to both delve in to what’s going on for you and suggest where to now.

If you think that’s an option for you, let me know where you are located and I’ll send you a list of AP Docs for your State and also Most Experienced nationally if you are prepared to travel.

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)

[susanmary]

Hi Lynnie

I stopped all antibiotics on March 14th and have been tested every 3 weeks since then – the levels are coming down SLOWLY – gee I so hope I didn’t jinx myself just now as I just had another on Thursday awaiting results!

YES have a sinking feeling as does my doctor that I have developed a sensitivity to Mino or Klacid.
I only took Milk Thistle (after stopping AP) for 1 week and stopped as the results went up further- they have since started coming back down again. My doctor also sent me for a Ultrasound of all of abdomen – luckily it only showed minor changes probably as I had jumped right on the high test results in Feb when the had been perfectly normal end of Nov And LOL I didn’t spend December on a drinking binge 🙂 🙂 :)!!!!

Amongst the zillion things I did for pain in the early years (12 ago) was Acupunture with the head of the Acupuncture Assoc in Sydney and whilst it helped it was far too transitory and I didn’t unfortunately get much relief – I did 25/40 sessions and I just couldn’t afford it for such limited results. I gave it another go about 4 years ago again with another highly recommended Acupuncturist with the same result – they tried their best I am sure.

I suppose I can only wait and see what next tests show – I did try AP doc in Sydney ( Dr D) in 2014 and I did lots of extra tests with her some of which had been done already by my GP but some new ( bowelsample etc etc etc ) but I had gone to her specifically to ask about AP and in the end she just said stay with what you have whilst looking after my bowel which I was already doing.

I know there is the Dr in Vic that works with the Vega machine.However I will keep in mind everything you have said is it okay to mention it to my DR – I won’t mention any names etc.

Warmest regards to all
Susan
Thanks for your great imput

[lynnie_sydney]

Hi Susan

I actually use both Dr D in Syd and Dr D in Vic (after many years, I can work with both with no probs and understand that no one has all the answers!!). Dr D in Vic actually works in tandem with naturopath who uses the VEGA to test for the right abx and for sensitivities food-wise.

I will PM you the kale and umeboshi vinegar (it’s not actually vinegar) recipe in case you want to try it. Got that from an American singer songwriter who used it (“food as medicine”) all the way through her chemo and did not have a single liver problem.

Let me know if I can help further. You can email me at lyn@roadback.org

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)

[lynnie_sydney]

….and no problem mentioning whatever you like to your Doc!

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)

[susanmary]

UPDATE ON SUDDEN ISSUES AFTER 2 YEARS
Hi Maz ,Lynnie,Phil and all

I just this half hour received my recent blood tests of 28th April -I am over the moon this is my 5th test I have had since my enzymes all came back extremely high in February this year. EVERYTHING has come back totally within normal range and only 2 very very slightly higher (but still within normal readings) of tests done Nov 2015.

I am incredibly relieved. Unfortunately we are often faced with a two edged sword as this more than likely and very very probably means the huge leap has been caused by my AP therapy which I ceased on 14th March – Mino/Klacid MON WED FRID as above long saga:) explains. BUMMER or as Maz so nicely put it “totally sucks” . AT the moment I am just going to have a couple of days of total gratitude put out there for them returning to normal!

THEN – well I do not know whether to restart and re-test. I could re-start Mino re-test, then add the Klacid back in and re-test and keep everything crossed. My pain levels have gone back up (not to pre AP level but very noticeably up) ARGH . Thanks to all of you for your advice and kind words – I think my doctor will suggest I re-start then test – do you think it is a good idea for me to add NAC as soon as I re-try if this proves to be her suggestion????- I certainly have been scared off Milk Thistle for awhile as the Enzymes went realy, really beserk after adding them in for one week after stopping AP.
Warm regards
Susan

[lynnie_sydney]

Hi Susan

If it is drug-induced hepatitis then you will have had other symptoms in addition to elevated liver enzymes, such as:
Jaundice
Fatigue
Loss of appetite
Nausea and vomiting
Headache
Abdominal pain
Dark urine
Diarrhea
White or clay-coloured stools

I had a selection of the above – other than any noticeable jaundice or vomiting. I did have a slightly enlarged liver on ultrasound. No joint inflammation or pain. So…..if it IS a response to the abx that’s causing your increased inflammation and pain, then it may be DILE.

In terms of re-introduction of the two abx you have been taking, if it were me, I’d consider introducing the Klacid first. And that is because clarithromycin is not on the list of most common drugs to induce DILE, if that is what you’re dealing with, whilst minocycline is. However, be guided by what your Doc advises in this regard.

I think N-AC is a very good sup to take as it’s liver protective, helps promote production of glutathione and also very good for supporting the lungs. I take it daily. (But I didn’t take this – or any other sups – while my liver was healing. I just gave it a rest from having to break down anything until everything normalised).

http://wholehealthchicago.com/2010/02/14/nac-n-acetylcysteine/

I buy mine through ebay and it’s usually delivered in a few days.

http://www.ebay.com.au/bhp/n-acetyl-cysteine

Hope you find some answers soon!

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)

[susanmary]

Hi Lynnie – thanks I will keep your suggestion about Klacid first in mind.
I had only a few of the symptoms like you but didn’t feel really any different so the results were a shock- however my tests were perfectly fine late November and terribly wrong by February so I was able to jump on it fairly quickly(3 months) as I said way above in the email, my doctor and I went through every single supplement, food item and beverage – we eliminated everything for the first 3 weeks before the elimination of antibiotics and as the enzymes had continued to rise we of course then stopped the antibiotics and THAT is when the liver panels started coming down – now back to very much in “normal” range.
I will speak to doctor but as you say giving liver a rest even if all appears fine – really a terrible shame about the Mino but well I will just have to work it out .
Thanks for the info of mail order NAC 🙂
Warm regards
Susan

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