Thursday, November 01, 2012

Starting treatment for Lyme


My gut problems stopped in time yesterday for me to make the hours drive to Noosaville and also because as usual he was running behind so I had an extra half an hour at home.  That clinched my decision to go especially since I don't mind driving and all I had to do was sit.  I was capable of sitting upright without feeling strain or heart racing from it but for the first half an hour I waited in the car reclining and snacking on nuts because it was past lunch time by then.  I carked it pretty early last night though, totally exhausted, but the sleep restored me enough to not be paying too much in terms of flare-up today.  And my gut is behaving today too.  I'm needing a sleep soon though.

I was surprised that the doctor did not want me on anything for my thyroid.  He said it was inflammation (thyroiditis) and he was more keen to start me on treatment for Lyme disease.  He said he bets both my blood and urine will come back positive for Borrelia.  He phoned for the results while I was there but they were not ready as I suspected and then he chatted to the staff for quite a while.  I could tell that he is passionate about the cause to bring Lyme disease into recognition and that he considers himself to be more on track than others who are treating Lyme too aggressively too soon.  Nevertheless I realise that all treatment protocols are controversial and both antibiotics prescribed to me are not without their side effects.  However, if twelve months of treatment is going to get me out of this terrible life I lead then I guess it will be worth it. It could be longer than 12 months and from what I read online, most people who are having success and stop treatment are relapsing.  Not everyone has success and some opt to go the herbal route.

I can't say I am not worried because I am really worried about herxheimer reactions when endotoxins are released and my history of gut problems with antibiotics in general.  It sounds like I will be complaining more about diarrhea than constipation when I start the second antibiotic.  Firstly I will be taking Plaquenil which I have been on before but I have not been on such a high dose before.  The instruction sheet explains how to build up gradually and acknowledges the eye problems and sun sensitivity.  I think that is why I stopped last time despite having eye problems before I even started like I have still now.  I may have gotten a rash too if that's when it was that I got a rash.  It's all a bit hazy now.  I have to report a rash if it happens, otherwise I will continue with the regime until I see him in a month.  I will be considering some multifocal sunglasses in the meantime.

UPDATE: I found my old posts about the rash and I did associate it with Plaquenil enough to stop taking it here

But then I started taking it again here

I think I kept taking it until July 2011.  It was prescribed by Dr Herd (local rheumatologist) for a possibly unknown autoimmune disorder but I did not have any long-term support from him. 

BACK TO THE PRESENT: I was hustled out the door before I could think to ask about the neurontin (an anti-epileptic used for pain) and whether doc thinks I should take it but I am quitting on the Endep except maybe on a one-off basis if I have bad problems with sleep.  I was losing my good days to being too dopey.  I also got more constipated and was putting on weight just in a few days.

Now that B is back in HB, I was thinking..... maybe X-mas up there.  X-mas is much more fun with kids around and Cohen won't be little much longer.  He is starting prep at school next year.  B may not like the idea and I know her family will want Cohen too.  I could well be too sick to do anything but lock myself in a dark house.

The dark house thing I did a couple of Summer's ago when my eyes were bad and I could not tolerate the heat.  I hate Summer up here.  I was pronounced low in vitamin D after that and then I got it back up with supplements because of the threat of osteoporosis and on advice by my current doctors.  I stopped taking vitamin D earlier this year when it was back up to 100 but now I am in the red for it being too high at 165.  I am also getting confused about the regular vitamin D test and the 1,25 D metabolite test.  Apparently lyme bacteria like an environment rich in vitamin D or maybe they cause it? Read the last sentence in the abstract I just linked to: "High levels of 1,25-D may result
when dysregulation of the VDR by bacterial ligands prevents the receptor from expressing enzymes necessary to keep 1,25-D in a normal range."  The doctor referred me to  I found a vitamin D calculator there and in reference to my 1,25-D it said "This very high value of 1,25-D shows significant VDR dysregulation, and is typically seen in people with extensive Th1 inflammation, often with cardiac or pulmonary involvement."

More on vitamin D and the vitamin D regulator (VDR) here.

All those doctors over the past couple of years who told me to get my vitamin D levels up got what they wanted.  Hmmp.  I did make quite an effort to do just that and eat so many of the foods on the list of vitamin D foods to avoid so that once again I feel like I am on some nightmarish merry-go-round.  I had just started eating black pudding again and I was really enjoying it and I have been having milk and fruit smoothies often fortified with whey protein.  I can't believe that even my humble fish oil tablets (which I do get benefit from every time I ache and get joint pains too badly (if I am not already consistently taking it daily) have all of a sudden become foods to avoid if I am assuming correctly that my doctor wants me to.  It was not a specific instruction - just the site reference and reference to the Marshall Protocol.  I've heard of all these things but I honestly thought it was taking things too far.  I was using LF dairy a lot specifically to get up my bone density readings (due again February 2013) and many on Lyme Protocols say to avoid it but it is very common to find anything with vitamin A in it to be fortified with vitamin D in USA and I guess it will become common place here too as the government start "educating people" about it with ads on the TV.  It seems like a conspiracy to keep the sickest people sick!!  If they don't check 1,25 D (metabolite) levels then a plain 25 D vitamin D test is useless.  That makes a lot of doctors useless because they follow the mainstream medical advice that seems to be controlled by greed at best.  OK, end of rant.  But what is left for me to eat now, just meat and vegetables that are low FODMAP?  I doubt my LF milk is fortified with vitamin D.  This is Australia and we are behind the times thank goodness.  But what about the sardines in the cupboard and the kelp noodles I specifically bought?

It seem I will be expected to be following some sort of detox program as well as taking probiotics, chia seed and aloe extract/juice for my antibiotic gut.  More money.  I can't afford Xmas this year.  I'm already spending money on buying better quality or starch-free or gluten-free foods, even organic when I can and other supplements etc and I am just about at my limit so something has to be given up.  I've heard that some of these antibiotics cost big bucks and I hope they are not something I will have to take on this protocol.  One last ditched effort before I quit on doctors so try and support me please.

Oh, I forgot to tell you B got the job and is starting today.  Good one.

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