All happening so fast

[Goodwife]

Katie,

My hubby has SD, but his experience with the mino was that the first 4-5 months everything was WORSE – it was scary and anxiety filled, but between 5 -6 months, things leveled off and started improving steadily from then on.  At the six month mark, he did add the clindy IVs, but the leveling off started before the IVs, so I believe like a  lot of others have experienced, things get worse before they get better.  Hang in there and good luck to you!

 

Goodwife

[spacehoppa]

Thanks for the congratulations guys!! And yes, this morning the feint positive turned into a definite positive!!!

The only trouble is, by this point in my last pregnancy (admittedly I'm only days in) I already had good pregnancy induced immune suppression, and this time I don't *sigh*.

Keep your fingers crossed for me that it's just kicking in late this time as I'm having to come off everything except steroids.

I do want to find out the gender of the baby – I have no patience in anything in life – but my dear husband wants to wait and see. I'm going to have to talk him round I can see 😉 . Fingers crossed this baby sticks and is healthy, and hopefully I'll be able to get back to the AP this time next year.

[Maz]

Many congrats to you and your hubby, Ruth! What terrific news and do hope you reach your longed for pregnancy-induced remission very, very soon. :roll-laugh: Please stay in touch and let us know how you're doing!!! All of us who have been following your journey to date somehow feel that we are, although self-anointed :dude:, adopted uncles and aunties to the new life growing within you now, just as Whaleharbor said!

Such happy, wonderful news!

Peace, “Auntie” Maz in CT, USA xo

[lynnie_sydney]

Many, many congrats Ruth! And I hope those hormones kick in soon to give you a smooth ride. 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)

[Michele]

Ruth,

What exciting news!!! Thanks for whispering that little blurb out there into cyperspace! You never know about ultra sounds and the position of a baby. Our boys were VERY proud of themselves and we didn't need any interpretation of the scan from the doctor! 😀 So you may find out gender whether you intend to or not! I wish you well and that your pregnancy will go well.

Best to you!

Michele

[maz.aust]

Hi everyone,

Interesting reading –

What I have most trouble understanding is that without a doubt have Rickettsia bacteria in my system, but do not have Lymes disease.  And yes, my Rickettsia did come from a tick bite some 29 yrs ago.

Is it different in the northern hemisphere from us???

Regards,

Maz-Aust

 

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Maz]

[user=492]maz.aust[/user] wrote:

What I have most trouble understanding is that without a doubt have Rickettsia bacteria in my system, but do not have Lymes disease.  And yes, my Rickettsia did come from a tick bite some 29 yrs ago.

Is it different in the northern hemisphere from us???

Hi Maz-Aust….nope, it's the same here. The trouble is that most people don't know they have these other infections commonly passed by ticks unless they happen to test positive for Lyme. This is because patients aren't routinely screened for these other infections and testing for them is only usually considered when a patient goes to a Lyme Literate physician. You won't get your average GP testing for these other infections, whereas Lyme testing, if one has the obvious rash and tick bite, is more commonly performed (one hopes!)…especially if one lives in a Lyme endemic region.

You're right, though, ticks aren't necessarily infected with Lyme and may pass along one or a number of other infections, other than Bb. One interesting pathogen that's also been found to be quite common when researchers have opened the guts of these nasty little creatures are “nematode” worms….although commonly found, it's still not known what havoc these worms might wreak, if anything, in an unwitting recipient. They're described as being “garbage vectors,” because there are so many things they carry, collected from all their hosts during their various life stages, not to mention all the different species of ticks that also carry their own peculiar batch of things. Lyme, for instance is commonly passed by the deer tick here….but…I think it's the Lonestar tick that is more likely to pass along rickettsia?….sorry, it's late here, the fog is setting in and just about to hit the sack…. 

I think where it might differ 'down under' is that the hosts of ticks (deer, rabbit, mouse, chipmunk, squirrel here, as opposed to kangaroo, koala, duck-billed platapus or whatever wonderful wild creatures that inhabit your part of the world that also play host to ticks), as well as the differing species and what pathogens they may be more prone to carry, will vary.

Now, I'm going to go to bed….hopefully not to dream of ticks, nematode worms and duck-billed platapusses!! :roll-laugh:

Night all!

Peace, Maz

 

Just adding an edit here….I was tired 😯 last night when I wrote this! The Lonestar tick is known for passing along Rocky Mountain Spotted Fever. I have to recheck which one is best known for passing Rickettsia. 

[katieb]

Fantastic news about the pregnancy Ruth. Congratulations !!! Hope you don't end up with twins like I did 16 years ago after taking a bit of clomid !! (No I jest – they are absolutely delightful – once they reach about 3 years old)

Seriously though – wonderful news, and I hope everything goes extra-smoothly including the hormone-induced relief.

God bless, Katie  :roll-laugh:

[maz.aust]

[user=27]Maz[/user] wrote:

[user=492]maz.aust[/user] wrote:

What I have most trouble understanding is that without a doubt have Rickettsia bacteria in my system, but do not have Lymes disease.  And yes, my Rickettsia did come from a tick bite some 29 yrs ago.

Is it different in the northern hemisphere from us???

Thanks Maz,……………….. I was screened for Lyme only a month or so ago and it came up negative, where I am definitely postive for rickettsia (it was only when the naturopath mentioned it to me that I remembered the tick episode some 29 yrs ago)..  I guess as we live here we are all aware of ticks particularly if we have pets and have them vaccinated every year.   Maz,  apart from the fact that it is obvious you know what you are talking about, you cracked me up with laughter when I read about the possibility of kanagaroo & platypus ticks  — (sorry to tell you we don't have them!)  We only have 9 in this country and for me it was the Paralysis Tick (Ixodes Holocyclus) that fell out of a tree and attached itself to me ……. not that it matters, though it did give me the ricksettsia bacteria.  Back to the subject at hand – – – – Is everyone on AP on Minocin?? or are you on a combination of drugs? The reason I am asking is unlike the rest of you, I am relatively new to this and my complete lack of knowledge sometimes shines through.

Just read your edit – perhaps your Rocky Mountain Spotted Fever is similar to our Ross River Fever????

Have a good day,,,,,:D 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Maz]

Hi Maz- Aust,

I don't think rickettsia can be different where you are, but there may possibly be different strains of the same genus in much the same way as there are many different strains of Lyme? Just a guess on my part… 

Btw, according to the Pam Weintraub book I'm reading, not all ticks pass on Lyme, but may pass along other bacteria and parasites….so it wouldn't be too strange to get rickettsia and not Lyme. It's just that most people don't think to get tested for these other infections here, unless they also happen to have chronic Lyme and aren't getting well on just Lyme treatment alone. This is where it gets confusing, though, because Lyme is such a pleomorphic organism that it manages to evade not only the human immune system, but also the standardized tests. Studies have shown Lyme to have a proclivity for collagen-rich tissue, so although antibodies may not show up at all on blood serum testing, (in mice studies) the spirochetes have still been found in the large vessels of the heart, the brain, spinal cord and joints, for instance. The way they manage to avoid being intercepted by the host immune system is because they have a pretty clever way of quickly changing up their outer surface proteins. So, as soon as the immune system detects a foreign protein, it goes out to attack, but then finds no source, as the proteins have changed yet again.  This is one of the major reasons that Lyme has to be a clinical diagnosis and not reliant on positive blood tests. Another major reason is that the standardised tests only test for certain strains, but there are actually around 100 in the US and over 300 worldwide that have been identified now. So, one may have a particular strain that just doesn't produce the right type of antibody required by the test….if there are enough antibodies to be picked up, at all, due to the “cloaking” mechanism of spirochetes, mentioned above.

As to the combos of drugs I've been on for the Lyme…there have been many. I've detailed them all in my personal progress thread.  LLMD's generally agree that changing up the protocol on a regular basis keeps the bugs on the run, really in an attempt to beat them at their own game.

Wow, Maz, Ross River Fever is a new one to me. Is that something from down your way? 

Believe me, I'm no expert on Lyme and coinfections…but one thing I've found is that you tend to get an education you never intended in your wildest dreams when you get a dx like this tricky blighter can cause.  I live in a pretty Lyme endemic region of the world and, for all the so-called educative materials and propaganda spread by the 'powers that be,' I was always led to believe it was a simple infection, easily treated by a short course of antibiotics, so basically nothing to worry about…just to get to your doc, if you found the typical bulls-eye rash. Well, I had the rash…two in fact, and both were ignored by my GP, because my Lyme titres came back equivocal. In many cases, early, aggressive treatment can clear up the infection. However, it all depends on the state of one's immune system and what strain of the bacteria happens to cross your path. The latest figure, according to the Pam Weintraub book, is that 20% of late disseminated Lyme cases (some of which got early treatment) go on to develop severe, chronic inflammatory conditions. In some areas of the CT, it's believed that at least every family has had one person infected and, with the vast majority of early cases being missed, this is a pretty staggering statistic. Shocking, actually. 😯

Well, I'm blathering on, as usual, :roll-laugh: so will sign off here. What treatment has your doc suggested for the ricksettia?

Peace, Maz  

[lynnie_sydney]

Hi Maz and Maz Aust! Thought you may be interested in this link to the merck online site which gives details about rickettsial diseases, which critters carry them and, most interestingly, the regions of the world in which they are found. May help to answer your query about geographical and host differences maz-au! Lynnie

http://www.merck.com/mmpe/sec14/ch177/ch177a.html

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.aust]

[user=27]Maz[/user] wrote:

Thanks Maz,  I have replied in italics to your answer

---

 

I don't think rickettsia can be different where you are, but there may possibly be different strains of the same genus in much the same way as there are many different strains of Lyme? 

I have no doubt that is true, I believe (have been told by a GP) that Rickettsia is the same genus that is Ross River Fever, Lyme disease & a couple of others.   

changing up the protocol on a regular basis keeps the bugs on the run, really in an attempt to beat them at their own game.

I think that is true of a lot of things, when the body becomes used to the meds it doesn't work as efficently does it…..

Wow, Maz, Ross River Fever is a new one to me. Is that something from down your way? 

Yes it is – comes from being bitten primarily by a female mosquito (particular to certain areas) or spider or tick if you want to read about it the website is  http://www.health.nsw.gov.au/factsheets/infectious/rossriver.html

I was always led to believe it was a simple infection, easily treated by a short course of antibiotics, so basically nothing to worry about…just to get to your doc, if you found the typical bulls-eye rash. Well, I had the rash…two in fact, and both were ignored by my GP, because my Lyme titres came back equivocal. In many cases, early, aggressive treatment can clear up the infection.

Isn't that the way it goes a lot of the time.

Well, I'm blathering on, as usual, :roll-laugh: so will sign off here. What treatment has your doc suggested for the ricksettia?

Blether away Maz – you are as of now my No1 person to ask before anyone else however you are going to have to wait until my next visit – because I haven't asked her which drug is for what – I don't know why, I just forgot that day.

You have a great week,

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[katieb]

Hi Marg

This is very interesting to me now, as, inevitably, my rheumy now wants me to start on mtx. I am just wondering how your daughter managed the changeover from mtx to mino, did she gradually phase one out & the other in, or did she start on the mino before stopping the mtx ?

Many thanks,  Katie 😀

[Author]

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