Failed again

[jltntl]

I’m back. I had been going really well after starting amoxycilin combined with mtx i was already taking (which wasn’t doing much for me). 6 months of health i had. that was June 11 to end January 12. Then had argument with kids cos they wouldn’t clean up after very expensive 18th birthday party i threw for dd. So left me in the sh*t financiall and within 6 weeks I was crippled again. I have been trying various things to no avail. just started back on doxy and also take pred 10mg cos i had completely stopped. (i know the argument about steroids and lyme disease but i am too far gone and couldn’t walk at all). now i getting worse again. i also have massive crashes. get freezing cold in bed and unable to function, get chest pain, then warm up but takes me hours to get out of bed. this happened again yesterday. i have had tests for addison’s and diabetes but they all came up ok. i, myself, suspect addison’s.
doctor has given me arava to try but haven’t started it yet cos wanted to see how i go on the doxy. i have had to stop most drugs to find out which was causing a shocker of a side effect that i could not tolerate. (you don’t want to know)
any ideas on the arava? i don’t see my rheumatologist any more cos he sent me a letter saying his ra dx was correct and lyme was probably a false positive! (but it was dna test and i have since had it confirmed with igenex western blot – severe lyme).
i think i’m dying. have no help cos family has abandoned me. what to do next?

[lynnie_sydney]

Oh Julia – I am so sorry to hear this. It is hard enough dealing with a debilitating illness and even harder when family are not supportive. I hadnt realised you were back seeing a rheumy – it is not surprising that you got no traction re the Lyme from a rheumy and, in fact, most GP’s, especially with Lyme still not supposed to be in Australia. I have no personal experience of Arava (leflunomide), but know it is in the arsenal of immune suppressant drugs and know that it can be a problem for the liver. And with your Lyme dx having been confirmed twice, I just wonder what, if any, effect that might have? Maz may have a more comprehensive view on this. Hopefully she will see this and chime in.

From an aussie location perspective, would you have the money/energy to afford a cheap fare to Melbourne? If yes, you could consider going to see Dr D and LW down there. That is who I see. They are very experienced in treating a basket full of pathogens and Dr D is not averse to having mtx in the mix to quieten the immune system down as long as abx are taken at the same time. LW would also test you to identify what it is that is causing the side effect. Their testing is way outside the conventional box but they have a very good track record. Sounds like you need something ‘out of the box’ now because nothing seems to have worked. And their charges are not of the money-making kind. You would pay the going GP rate for Dr D for a long consultation and LW’s fees are very reasonable (less than Dr D for an hour).

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)

[Maz]

Julie, as the mtx wasn’t doing much for you, have you considered adding plaquenil as a trial before going on arava? Just wondering, because plaquenil is used often by Lyme docs (for its anti-protozoal and cyst-busting props) and is also commonly used for RA (for anti-inflam props). Compared with arava, it probably also has less potential for side-effects and will be targeting bugs at the same time. I’ve used plaquenil twice for periods of about 5 to 6 months and it got me through some rough patches. As you’re already aware, LLMDs don’t like immune-suppressants, but plaquenil gets the thumbs up by them.

Whatever you decide, you mustn’t feel like you’ve “failed!” These diseases are rough and needs-must. If you need some help with conventional drugs, then there is no failing in that. Quite a few folks do this and, when they are stable will begin to slowly wean from them. Although breakthrough herxing and drug rebound is likely to occur as the immune system re-awakens, when done in a really controlled way, it is very possible to get off these drugs eventually and just be on AP.

If you can somehow get to Dr. D and Dr. W, as Lynnie suggests, then this would be the best solution, as you’d be seeing docs who are au-fait with bug-testing and treating. If not possible immediately, then perhaps the plaquenil or whatever you decide you need in the meantime will see you through until you can? Would also suggest getting to work on detoxing…getting that flood of bug toxins from flaring to exit more swiftly from your body should help to lower inflam, too. 😉

Wishing you all the best, Julie. Let us know how you get on and hang in there!

[jltntl]

Thanks Lynnie and Maz. I have been on Plaquenil before, but can’t remember when. Think it may have been 2010. I could try that again. I suppose I should go to Melbourne. From memory they are out in Cranbourne – enemy territory – all my inlaws are there. or should i say outlaws! getting over there would require a hire car too and dh has left me penniless. I really need to get to the family law lawyer but every time i go, i never get past first base.
i dont think i am well enough to get to cranbourne on my own. when i push myself, an hour or so later i have these crashes that last for days. having one now that began on thursday. have only just gotten out of bed.
i will think about melbourne and see what i can do for myself. thanks.

[lynnie_sydney]

Julia – they are on Mornington Peninsula. Easy to access by train. Take airport bus to Southern Cross Station then train straight down. Have you got someone who would travel with you perhaps?

Your other option would be to consult Dr N.D in Sydney. She technically has closed her books but takes on new patients who are very ill. She rx’s AP, is supportive of Lyme dx, so you wouldn’t have to persuade her but not sure who she would recommend for specialist treatment – she is not, as yet, Lyme literate herself. Weren’t you seeing Dr S in Sydney at one time? What happened there?

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)

[jltntl]

Hi Lynnie. Yes i’m still seeing Dr S in sydney but i’m not improving. mind you he has prescribed arava but i scared my liver will go cos these days i drink too much red wine – seeing as my family have abandoned me. but there is something else going on with me – addison’s or insulin resistance or whatever – but he tested me for both and found nothing. but again today, i sat at computer for ten minutes, got up and was feeling like i would pass out…and it lasts so long – the worst comes after i been standing 2 or 3 minutes. i had to hang on to my benchtop today and at its worst my eyes start hurting at the top like i’m having fingers pushed in there. so this cannot be RA or lyme arthritis, surely? and today i feel like i have the atrial fibrillation back again. it’s not palpitations. this is full on nutty heart which persists. has gone on all morning. just taken 2 panadeine forte and feel bit better.
also re the arava. i just wonder if it going to be like mtx and not work for me. i know rheumatologist wanted me to use mtx and fail so i could get the biolitics, but don’t want to inject either! (have a bit of a needle phoboia. ok if they take blood – but pushing stuff in….mmmm… and i would have to do it myself!) I still cannot believe i have this disease and my brain tells me there is an answer somewhere. i wonder if something else is causing this. (like addisons).
where on mornington peninsula is the clinic? frankston? or beyond? it would be very difficult for me to go there. i am alone now. sick and having to cope alone.
i don’t know who that other doc is you mean in sydney. also i remember you mentioned a doc in greenhills, maitland. have been wondering about him. i need someone to look at me with fresh eyes i think. something will give. i can’t continue like this. maybe i should go back on the mtx and progress to biolitics.
wondering too if the heart AF may be the doxy i started last week. last time i think it was the mino that caused the atrial fibrillation that put me in hospital.

[jltntl]

I should say Dr S has been good. But also he expensive so i try not to go too often. but he does ring me if i call him and he does all he can to help. he wanted me on iv abx but cos of the distance i have to continue on oral. oh, and he also wanted me on Zed abx but i can’t take them cos they expensive and not on the PBS.
I really need to get my dh’s lousy a**e into court, but i am so sick that i can’t get the info together that the lawyer keeps asking for. money would help.
i have applied for disability and waiting to hear…. but you can’t live on that. well i can’t. don’t know who can. so i need money. it’s catch 22 for me. the stress dh causes me makes me sick and i he is constantly doing something to cause me stress. would you believe he has been trying to “give me a record”. he kept threatening avos cos i would send him evil texts in retaliation to his evil deeds – like withholding child support or whatever… but now he has kids he used 18yo daughter to get his avo. he took my 16yo out of school during exam week and got daughter to cover. when i managed to see her at the netball courts (cos they are now living in gated apartments with loads of security) she wouldn’t talk to me. so we had massive argument about her lying to me and covering for dh and ds and i was trying to keep up with her as she walked away. she told cops I ran after her! mmmm. that is an impossibility. and that i punched her. well seeing as my right hand was out of action, that was impossible too. i did try to grab her phone though as she threatened me with calling police!!! so what can you do. actually it was all i could do to stay on my feet as dd kept pushing me and i nearly ended up in the gardens. at the time i had ruptured bakers cyst from massive knee inflammation. dh told her to get avo from thailand and she did. and then when i texted her to tell her off for wasting police resources and told her i didn’t care how many avos she took out, i would tell her what i thought….she rang police and they arrested me!!!!! so i’ve been fingerprinted and photographed and locked in the holding cells for half an hour. also little bird told me that dh also went down to cop shop to get avo (cos i texted him too and told him what i thought of him taking son out of country without telling me). but cops told him he covered by dd’s avo. so apart from him, i now have kids ganging up on me. so you can see i am stressed about everything. so i can’t see me getting any better either until i lose the stress in my life. can you believe it! this is happening because i believe my dh has aspergers and he has no consideration for anyone except himself.

[dianne-sunshinecoast]

Dear julia, i am so sorry to hear of your dilemma. from experience i know something of what you are going through. myself i found stress the major problem and contributer of my health problems. and when i sadly had to let a lot of people in my family who were toxic to me , go with love and it has taken me years to do. fortunately i have began to heal , on many levels. i wasnt able to go on to antibiotics full time , for lots of reasons , money , lack of and no family etc , i do beleive it to be the answer , no doubt. am still using mtx though reducing happily . Had tried Arava as well early on but had a bad itchy rash from it. though we are all different. but for me the lack of stress has been a huge help. sending you much love and you will be in my thoughts . kind regards di.xx.

[jltntl]

thanks di. appreciate your words. the dissappointment of my expectations of people who were close to me is hard to reconcile. yes, need to reduce the stress.

[jltntl]

My doctor prescribed me plaquenil but i am desperate to get some relief.

so now i’m taking 10mg Prednisone, doxy x 2 per day/nilstat x 2 per day, plaquenil x 2 per day.

i also put myself back on the mtx yesterday. i hated the stuff but i am getting worse i can barely walk or function.

i also have additional abx to start – tinidazole 500mg – 4 per week (all taken at once).

i get shocking shin pain and can barely move my legs when i rest(!) them on the bed. after lying on bed i can barely move them to get off the bed and then to get them to walk is another miracle as well…. any ideas why this might be happening?

also my face at top of jaw in front of ear is tender touch…even to just run my finger lightly over the top causes shocking pain. my jaw itself feels ok on the inside. but in the past my jaw was a problem with pain and difficulty opening mouth.

[Rosemary Perth Aust.]

Julia,
I am so sorry to hear of the whole situation. Shocking when the family let you down like that
after all you did for them. Seems you are too kind yourself.

Darling I read on the rheumatic.org board about a treatment which is presented as an adjunct therapy to the antibiotic
protocol for inflammatory rheumatic diseases, particularly for patients with intractable pain. You could print it out and ask your Doc close by.
It is relatively inexpensive by comparison to other meds and
has so many advantages. The fact that you start on a couple of drops and gradually increase as you
can tolerate it has an advantage. Needed a detox, pain reliever also fungal relief myself & the results have been amazing. There is not enough info there for what you need for the oral H202 but it can be found on the net under Drinking hydrogen peroxide.
I personally preferred to give this a go to an IV of the same, as you have more control & go at your own rate. Just could not believe the difference it makes, although on three times a day the herxing was pretty bad but you dont have to go that far to get results.. Use it in the bath as well with epsom salts and spray on in summer. I doubt i will ever go off it. Its not nice to take but it works. There are a couple of things that make taking it easier if you want to try them.A very small peppermint lozenger immediately after taking it, soothes the gut. You dont have to even use it all. It was recommended by a pain specialist, on the rheumatic site, with several different techniques.
The info on the net Drinking Hydrogen Peroxide is very informative and
certainly made a lot of sense, especially for those who may have a few problems or are frightened, and many are. These conditions can be frightening. We all react differently to all medication so all you can do is try.
I also had to do things that were cost effective as this whole thing has cost me an arm & a leg like every one else.. The 35% I have posted to me from within Australia the 35% food grade.
Getting rid of the toxins has been a real problem, so this has really helped in that regard. Its not every /ones cup of tea but we all need to know what our options are especially anything that will cut down the travelling, cost, and the way you feel. My rheumy wanted all the info after he saw the results so it spoke for itself.
I feel for you Julia, and hope you can work something out soon that will help with all the advice given.

[lynnie_sydney]

You need to be very, very careful about drinking food grade hydrogen peroxide. You cannot drink it at the food grade percentage of 35% without diluting. The quote below comes from the information site that promotes hydrogen peroxide therapy. Please be careful and research.

35% Food Grade Hydrogen Peroxide / 50% Food Grade Hydrogen Peroxide
Used in food products like cheese, eggs, whey products.
Also used to spray inside of foil lined containers for food storage (antiseptic packaging system).
You can find food grade hydrogen peroxide in 3%, 6%, 7%, 12%, 17%, 35%, 40% or 50% solutions.
Consumption of any concentration of hydrogen peroxide above 10% can cause neurological damage.

http://www.drinkh2o2.com

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)

[Rosemary Perth Aust.]

That is what the information is for. It states specifically not to use at full strength and be careful with it. It gives you all the details on how to use and dilute it. I had to go it alone and I would never ever have considered to take it straight. You cannot go ahead without the information which is specific..
I offered the source that I researched, as the books tell you little because they want you to buy them of course. I bought one first but was a waste, I did not get the info that I was happy with. I swear by it. All the books that have been written varify the fact that it works & works well for most people and I want patients who are suffering to know about it. The amount you start with, would not hurt anyone. You increase at your own rate and only one drop more anyway. The most important thing is to keep it in a safe place out of the reach of children like all medications.
Patients need to know about it so you have a choice. It is important to know what ALL our options are. I am so glad that I had the guts to give it a shot. If you dont like it you can still use it in the baths for detox.

[jltntl]

I think my major crashes must be due to the Prednisone. Here’s what happened:

9.00 – 11.15: Drink water and NTH (thyroid extract). 1 cup tea. 1 egg cheese omlette. 5mg Prednisone. Fruit juice. Fed dogs and cate.

walking ok when i first got up, even put on some washing. by 11.15 my hip and knees so bad i could barely walk. pain. had to hang onto a chair to get up back step (which is a low step).

11.15: fading fast. cold. dizzy. barely able to stand. just made it to be. freezing cold and jittery. heart rate felt odd. slower than usual. wondered if it was in atrial fibrilation too. Felt v. nauseus. contemplated ER but doctors would not be happy that i had quit the mtx for abx and pred.

12.30: finally warmed up – very warm now. warm as toast.

1.00: went off into deep sleep.

2.00: awoke. bit shaky at first. smelly orange urine. heart rate more normal. still nice and warm.

5.00 was able to get up from bed. took doxy.

this has been happening to me for months now.

Any ideas? (it is not the nth cos same happened yesterday and i didn’t take the nth.) I think it must be the pred…. i would have thought these crashes would be from too little cortisol, not too much. I usually take 10mg/day – 5 morning and 5 evening. (if i don’t take the 5mg in evening i cannot walk in morning). sheesh. but i am not taking it tonight!!

[jltntl]

I think I have my answer from a thyroid cyber mate.

I have been taking Prednisone for months to try and control inflammation and keep me mobile. Doc wanted me to take all 10mg in morning. But it wiped me out. So i was taking 5mg in morning (which still wiped me out) and 5mg in the evening (cos otherwise i couldn’t walk in morning).

I take thyroid hormone first in a.m. and an hour later take pred. An hour after taking Pred, I would stand up and nearly pass out, dizzy, shaking, vision loss, barely make it to bed, heart pounding, freezing for an hour and then hot and sweaty, and then a deep sleep lasting minimum an hour, and then i’m so wiped out i need to stay in bed for another couple of hours – so pretty much from 11am until 5pm i am wiped out. then i am ok. take pred again in evening and go to bed early without any problems.

This has been going on for weeks now and getting worse and I wonder if I will survive it each time. So after discussing same with doctor and he not having any explanation agreed with me i should taper off the Pred. mmm. Did that and next day body had stopped. I couldn’t walk at all on Saturday, barely able to get out of bed and shuffle to loo with pain each moment i was up. in bed i couldn’t move my legs on the bed. i wanted to die.

sunday my thyroid cybermate suggested it is a thyroid dump caused by T3 pooling instead of being absorbed (probably due to a REverse T3 problem which in itself causes pain… which is what prompted her idea).

so yesterday and today i took 2.5mg pred 4 x per day. guess what!!! normal days!!! no collapses, no mobility/pain issues. inflammation still up and i still have to get on top of that. but maybe Reverse T3 needs a deeper look.

I’m pretty excited to think this may be the explanation.

[Author]

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