Clomid puts me in remission! And AP seems finally to be working…

[AmyP]

Hi Maz,

When it comes to bio-indentical hormone supplementation, the first thing is to consider whether you want to palliate your disease or cure it.

Patients on the Marshall Protocol are generally advised not to take bio-identical hormone supplements as when the chronic bacteria causing a particular inflammatory disease begin to be killed, the havoc that they cuase on the nuclear receptors (hormonal receptors) by dysregulating 1,25-D levels begins to subside and finally stabilizes completely.  During the process of hormonal rebalance, taking extra hormones can interfere with the body's ability to “re-learn” to balance hormones on its own.  Hormones also have effects on so many different receptors that taking more of them might have unintended consequences that we just don't know enough about at the moment.

But if you just want to manage your symptoms and bacterial load, I don't think bio-identical hormones are going to really hurt you.  Instead of trying to fix the hormonal problem by eliminating a full bacterial load, you are giving your body some of the hormones it doesn't make anymore because of bacterial dysregulation.  Establishing more normal hormone levels through supplementation can make some people feel better in this situation.   But if you do take bio-identical hormomes, definitely do not take any more than needed to correct an established deficiency.  If you take more hormones than those needed to return your hormone levels to the normal range, then the extra levels will cause problems.

When it comes to hormones affecting the survival of mycoplasma.  First off, we do not implicate mycoplasma in the pathogenesis of inflammatory disease, except as co-infections in some people.  What we feel we are dealing with instead is a chronic, intraphgocytic, metagenomic microbiota – essentially pathogens in the L-form and inside the biofilms.  They too may use cholesterol as part of their structures, but here's the thing.  The body already, naturally, has enough cholesterol for these pathogens to easily get the amount they need.  They really only need small amounts of cholesterol to survive.  So I personally don't think the bio-indetical hormones would contribute much to their survival in that respect as they already have the sterols they need.

So I pernonally wouldn't worry about bio-identical hormones “feeding” the bacteria that cause your disease or any mycoplasma co-infections.

Spacehoppa –  Any time you take higher than normal levels of estrogen, or lower than normal levels of estrogen you are going to mess with the VDR in some way.  I guess that patches might be a lesser evil over Clomid, but in both cases you are messing with receptors involved in the immune process.

Having a child is a tough decision at this point, especially judging from your last pregnancy.  Sorry to hear that it was difficult.  I guess it comes down to weighing the pros and cons and being sure to learn as much as you can about pregnancy and chronic disease.

Best,

Amy

[Maz]

[user=494]AmyP[/user] wrote:

The body already, naturally, has enough cholesterol for these pathogens to easily get the amount they need.  They really only need small amounts of cholesterol to survive.  So I personally don't think the bio-indetical hormones would contribute much to their survival in that respect as they already have the sterols they need.

 

Hi Amy,

Many thanks for your reply. This question has been bothering me, because the use of bio-identicals and need to suddenly stop them preceeded the swift onset of my RA, right after getting Lyme by several months.

I'd been taking bio-identical progesterone, estradiol and testosterone for about a year for perimenopausal symptoms and had to stop as the holistic doctor prescribing them wasn't checking my hormone levels after initiating therapy, saying it wasn't necessary. I knew something was wrong, because I was putting on weight and couldn't lose it through diet or exercise, which wasn't normal for m e. So, I asked him to test my thyroid and (strongly) suggested he also retest my hormone levels. Turned out my thyroid had been knocked right out of whack (TSH very low so I should have been losing weight), thryoid peroxidase levels were elevated and had started developing cellular follicular lesions (nodules) that needed RAI and biopsy (benign)….and the estradiol levels were 4.5 times the level they should have been.

Three months later, after stopping bio-identicals, although my thyroid levels were now back within range (without medication), I managed to get Lyme Disease with all the usual signs and symptoms (rash, stiff neck, fever, migrating arthralgias and myalgias). In spite of the standard, one month of doxy when everything worsened significantly, I was diagnosed with severe, swift onset RA, affecting pretty much every joint, including my jaw. So, literally, within 7 or 8 weeks of getting Lyme, apart from the messed up thyroid, I had gone from being pretty healthy, at my ideal weight and working out in boot camp, to being bedridden in agony in every part of my body.

One thing that I find interesting is that my total cholesterol was borderline high (235) when my bloodwork was done to evaluate my thyroid. Then, 6 months into having RA, this had plummeted down to 141. So, this was just another bizarre piece of the whole picture for me since getting RA and made me wonder why this would have occurred, if pathogens weren't somehow sequestering it for their own ends.

I think this timeline of having stopped bio-identicals cold turkey (on the advice of the holistic doctor who rx'd them) had continued to play on my mind since. This was 2 years ago now. As such, I just felt that there must have been some connection with their use, suddenly stopping and the severity of my Lyme and the triggering of RA. It also concerns me that their palliative use by doctors for rheumatoid disease may set women up for more trouble down the road when they eventually come off them. So just felt it important to have this question addressed by someone as knowledgable as you.

Thank you very much for your time and consideration and I will spend some more time pouring over your information above. I enjoy your website very much and have learned a great deal from all your researches. Thank goodness for studies such as yours and let's hope that somehow, one day the light will go on in the medical world and all of it will hit the mainstream!

Peace, Maz

[spacehoppa]

Hi Amy, Thanks again for your reply! I appreciate the need to only supplement up to replacement levels. I won't be doing it, especially whilst trying to get pregnant, but it's good to understand the science.

Hi Maz,

Gosh, I totally agree with you about the BHRT (bioidentical hormone replacement therapy) and the need to wean from it slowly. My mum developed RA when she reached menopause (as many women tend to) and she got it under control with the usual DMARDS. Then she had a stroke, so her doctors stopped her HRT cold turkey. She immediately went into the worst flare of her life, which has only be controlled ever since by the use of prednisone. It's quite sad to think that where estrogen (and maybe progesterone) were once doing this job, now she has to use prednisone.

I think the real danger zones are in the sudden drops in hormones, such as at the end of a pregnancy, or the onset of menopause. I know my own RA flares have been so much more noticeable since using the clomid over the past month. It's like it's turned up the volume and now I can see the peaks and troughs so easily it's obvious the part that estrogen is playing.

For instance, after stopping the clomid (presumably it largely wears off within a couple of days) I flare 2-3 days later. And after ovulation I flare (this one is the worst) 2-3 days later. (I could barely walk it was so bad.) This is when estrogen peaks and then drops dramatically. Then in the days before menstruation, another flare. This coincides with both progesterone and estrogen dropping to their lowest levels.

So I wonder whether both the total level of hormones and the direction they're moving in and with what speed is important. It seems to me that it's when we have the most extreme cycling that we run into trouble. (I first got my RA within a year or so of beginning my extremely unpredictable and long menstrual cycles.)

Perhaps this is the opportunity that the l-forms have been looking for to ramp up production and this tips the balance into chronic disease.

Certainly, all this begs the question, if we're going to stop taking hormones of any kind, we need to wean ourselves off them slowly, like we do with prednisone, so as not to shock our body or signal to the l-forms that it's time to party.

Thanks for the fascinating discussion 🙂 !

[Michele]

Amy said: Every receptor in the body must be transcribed by another receptor

Amy, since there are thousands of receptors, could the differences between actual TH1 disease presentation that now get different labels such as RA, Lupus, Schleroderma, MS, Sarcoidosis, etc. be directed by the mix of hormones and the receptors that are being transcribed?

It's clear that Dr. Marshall's molecular modelling and research shows “chronic, intraphagocytic, metagenomic microbiota of pathogens cause inflammatory diseases.” The “pea soup.” But in a soup you can still see individual peas, carrots, onion, potatoes, etc. Like we can see different symptoms and disease labels. What factors are involved to create different disease symptoms?

Is it the different ratios of the kinds of pathogens? Or could the specific receptors that get blocked change the resultant disease picture.

I'm also trying to figure out why male RA patients tend to improve more quickly on AP or MP than female patients? I'm wondering if it is the mix of hormones and receptors that affect genders differently in recovering from chronic disease.

Thanks for any help pondering these ideas.

Michele

[spacehoppa]

I know this topic was covered by Amy, but I was just reading some of the pages at marshallprotocol.com and read this, which seems to concur with what Maz was saying. (My apologies Maz, if this is a repeat of what you wrote earlier.)

http://www.ncbi.nlm.nih.gov/pubmed/15030187?dopt=Abstract

“I think the way the Th1 inflammation initially overpowers the immune system, is that the level of infection gets to a critical value, and then an incident occurs (eg, sun-holiday, pregnancy, acute infection) which causes extra 1,25-D production, leading to a breakdown of the negative-feedback mechanisms which normally control the 1,25-D production in the phagocytes. From that point onwards those control mechanisms are not able to reliably maintain control. The patient enters a “relapsing-remitting” phase of the disease process.

Additionally, the TACO membrane protein, through which Mycobacteria infect the phagocyte (and possibly L-forms too), is down-regulated by VDR. So the actual entry of the bacteria into the phagocyte may be facilitated by excess ingested 25-D or Vitamin D causing the VDR to shut down.
http://tinyurl.com/nkb7x

Cholesterol is also involved in the expression of TACO:
http://tinyurl.com/l8rzj

..Trevor..”

[Maz]

[user=415]spacehoppa[/user] wrote:

I know this topic was covered by Amy, but I was just reading some of the pages at marshallprotocol.com and read this, which seems to concur with what Maz was saying. (My apologies Maz, if this is a repeat of what you wrote earlier.)

Not at all, Spacehoppa!  Thanks for sharing…oh, do wish I had that science degree, though. All the terminology has my head spinning. :roll-laugh:

Glad you got some insightful answers for your Clomid question…it is a difficult one, isn't it? I really do feel for you having to go through this, but you're so smart and proactive about it all, I feel sure you will be making all the best-informed decisions for you and your family. What an incredibly powerful role model you are for your whole family!

Wishing you all the very best!

Peace, Maz  

[spacehoppa]

That's awfully nice of you Maz :blush: . I wish I could take the compliment, but I have to disagree. My thirst for knowledge is more 'curiosity killed the cat' than considered decision making.

I tend to get quite obsessive about finding my answer and then make some half-baked decision off the back of it. I'm trying to learn, I really am. Having these diseases makes you game for anything – too much really.

The more I research though, the more I realise that for me the AP and maybe the MP later on really are the only way to go. I'm thinking the MP might be better in the long run because the benicar will hopefully offset the effects of not having any steroids to rely on. Frankly, the thought of trying to wean off the steroids TERRIFIES me 😯 . The last time I did that – July last year – I wound up with huge swollen joints (and an inability to cope) that only went away when the steroids were reintroduced. So it's hard to picture completing even the pretreatment phase, let alone the treatment. Gah!

But sooner or later, it must be done I think. The fact is, as far as doing the treatment before getting pregnant again goes, I just honestly don't think I have the physical or emotional strength necessary to find a doctor in the UK who offers it, shun the NHS (and probably burn my bridges with them in the process, thus denying me access to free medical treatment – a problem as we don't have health insurance), wean off the steroids, follow the 3 phases of treatment and come out the other side young enough to still want another baby.

My husband and I had a long heart to heart talk about it at the weekend, and he said he'd support me in whatever decision I made – which is exceptionally kind of him really, considering what I was proposing. But in the end, I've weighed it up and have decided that for now, we're still trying to conceive. Right now, that's all I've got in me, which is sad for me to even read myself. :crying:

But the question remains, how long do we try for before throwing in the towel and trying to get well instead? *sigh* …A question for another day…

Thanks for listening to my horribly self-centred whining… sorry about that :doh: .

[lynnie_sydney]

oooh spacehoppa…dont apologise – that was far from a whine. You have alot to consider and I think you are exceptionally courageous in your approach. Have you considered trying to contact that AP/MS researcher I PM'd you about? It would be so lovely for you to get some really hands-on help with all this. 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)

[spacehoppa]

You know I will contact him Lynnie. Thank you so much for sending me his details. I'm sure you'll relate to this when I say that before I contact him I want to get it straight in my head (without the brain fog) what I'm going to say and what it is I'm looking for, as at the moment, whilst trying to conceive my treatment options are limited.

I'm just waiting for that day when the sun comes from behind the clouds in my head and I know what I want to say and it all flows nicely. I don't want to blow my first contact with a confused email written whilst dog tired.

Speaking of which, God I feel like I've been hit by a truck today. I'm on a double dose of clomid this month, as per the instructions, and yesterday I felt really well. Well enough to take my son to the park and playground for two hours in the sunshine. Today I feel awful. Everything hurts and I feel like I've got sun stroke. (I've always been exceptionally prone to sun stroke and so usually always wear a hat, but stupidly yesterday I didn't.) This will come as no surprise to those on the MP. Perhaps I am more sun sensitive than I thought?

You know, I was thinking about this, and my rheumatoid arthritis came on immediately after an amazing watersports holiday kayaking down the Ardeche in France and windsurfing off the coast. It was probably the most intense all day long (and bouncing off the water) sun exposure of my life to date. It makes me wonder whether that was my trigger, based on this written by Trevor Marshall:

“”I think the way the Th1 inflammation initially overpowers the immune system, is that the level of infection gets to a critical value, and then an incident occurs (eg, sun-holiday, pregnancy, acute infection) which causes extra 1,25-D production, leading to a breakdown of the negative-feedback mechanisms which normally control the 1,25-D production in the phagocytes.”

This had never occurred to me before. But I remember it very well indeed. The arthritis struck within days of returning from this holiday and was accompanied by a serious depression.

Does anyone else remember an association between a sun holiday and their immune disease starting? I had never made this connection before, so find it quite interesting.

[Maz]

Ruth, don't know if this will help, but John McDonald shared this little tip with me. He said a really good way to seek out an MP doc is to go to the MP main site and click on the member list. Scroll down till you find someone in your locality. I just did this for “London, England” and tons of members came up! You then just set to work private messaging these folk (or emailing them if they have added their emails to their profile) and ask them who they see that is helping them with the protocol. This way, you get physician referrals by actually hearing what others think of their physician!

This should really inspire you to get you moving with MP, if this is what you're leaning towards. As I say, tons of folk in England doing the MP, so they must be finding a physician somewhere to help them.

Oh…and in answer to your question about sun, holidays and flares….a big YES to that. We had a thread a month or so ago where people were describing their return from a relatively pain-free vacation in the sun only to experience bad flares on their return. Of course, I'm not on MP, myself…may go on to it later…but the discussion inevitably went on to the whole Vit D thing.

Good luck in your searches…may not be too hard finding a doc, afterall! 😀 

Peace, Maz

PS Btw, where in the UK are you? Though living in US now (and born in Canada), my parents are from Hampton, Middlx, and I was sent to boarding school in Malvern, Worcs, then on to college in Nottinham. Lived in Chatham, Kent and Wellingborough, Northants. Family in Kent and Lincs.

[Maz]

PPS…Also you might try asking at the cpnhelp.org website for physician referrals in the UK. Dr Wheldon (a microbiologist in the UK) devised the “Wheldon Protocol” for his wife who had MS and brought her into remission. You might have luck finding a physician willing to do AP from members there, as well (not sure if they have a physician referral list, but they may well do).

Peace, Maz

[spacehoppa]

Thanks Maz. Yes, I noticed lots of people in the UK on the MP. From what I hear it's mostly GPs offering it to their own NHS patients, but I think there's someone in Bolton offering private consultations. This would work for me as I live up north in Cheshire, only an hour away from Bolton.

I just need to get clear what enquiry I'm making before making contact. If I don't want to go down this route for another year or two, I would just be putting feelers out rather than actually needing to change doctors right away. But I will certainly follow up all these great leads, thank you!

Wow, you've moved around a lot. Malvern is a lovely place isn't it. I used to live down the road from there in the Cotswolds – still a favourite place of mine. It must give you a pretty broad world view having lived in the UK, Canada and now America. I lived in America for a couple of years when I was a kid and remember this part of my childhood more vividly than any other. It's probably one of the reasons why I holiday there so often. I feel really at home in America, though it's nice to come home to dear old Blighty 😉 .

 

[Maz]

Yes, Malvern really is a beautiful part of the world, though must admit, between the ages of 15 and 19, when I was at school there, I didn't appreciate it as much as I should have. In the late 70s, boarding schools were still pretty stark, harsh places. We were allowed out for walks on Sundays, though, up into the hills, so that was a nice escape from the drudgery of a full daily schedule of assemblies, classes, prep, sports, more prep, church and bed at 8pm! I do miss England very much, although the CT countryside is a pretty close second…probably why it's called, “New England.” It's just those dastardly ticks that make it difficult to enjoy the outdoors here. :sick: 

Veering slightly off-topic here, but where do you usually visit when you return to the US? Hey…just an idea, but…when you're ready to embark on your chosen protocol maybe you could work it so it you could visit one of the better known docs here to get you started? I might have this wrong – maybe someone could clarify – but I thought I remembered someone mention that Dr S in Ida Grove, Iowa, actually gave them a lifetime script for minocycline? My memory is a bit unreliable at times, but for some reason that sprang to mind…maybe worth checking into, anyway. Whether that sort of script would be worth anything in UK, though, is another question… 

Peace, Maz  

[spacehoppa]

Thanks Maz, another good thought… I usually end up in Florida (my son is loving Disney World et al) or Georgia – where I used to live. I may well go for a holiday there next summer to North Carolina, so if anyone knows a good AP doctor there, I'd be sure to schedule an appointment for an IV!

As for getting minocycline scripts, if worst comes to worst I can order it over the internet without a script. I've done this already and they send me an australian brand called Sigma. It's not Minocin MR, but I think it's an okay alternative. I know people say don't trust buying over the internet, but if you vet the site carefully, and check that the labelling and inserts are the same as photos from the internet then it's probably okay. If it walks like a duck and quacks like a duck… Though obviously I'd rather do it all above board (and currently I am doing as Wyeth Minocin is available from the chemist again), I am not above doing what I have to for the sake of my health… See what I said earlier about my judgement not being the best… *cough*!

My husband and I would love to visit Canada some day, and may do on next year's trip if possible. We have friends in Vancouver he'd like to visit. I hear the scenery is breathtaking. Something I'd love to see for myself.

[Michele]

Hi Spacehoppa,

Your sun exposure sounds really familiar. My family took a vacation to VA beach and Arizona 😯 last summer. Looking back, I recall extreme fatigue after every day long sun outing. My feet hurt to walk on the sand at the beach??!! And in the afternoon I was so tired I just hung out lying down under the beach umbrella. A couple weeks later I was shaking after hiking the Grand Canyon rim for two miles. At that time, I had no idea what was affecting me, but I knew something was seriously wrong. My first flare waited until my average daily sun exposure dropped in Sept. when I started teaching again.

I went through exactly what you are talking about in finding an MP doctor. I even practiced on a “new to me” rheumatologist…and failed. He just referred me on to a research institution rheumatologoy department. But, just as the MP folks say, it was my own general practitioner who became my MP provider!!!

I had gone in to him with three outlines of my treatment options in the order I preferred. AP (which I was currently on), MP (with all the downloadable information the MP site gives) and standard rheumatology with a request for a referral to a “second opinion” rheumy. So he knew I was looking at all options. He also had previously treated me through some really severe pneumonias, so I believe he understands my complete fear of taking immune-suppressant medicines when there are alternatives.

The next time I went in to see him, I decided to follow his lead and the first thing he said was, “Let's get you set up on the MP!” He hadn't done any more research than the downloadable info. I had provided. You can imagine my initial shock. I'm really fortunate. I can be completely honest with my PCP doc, too. Including my fears about MP. He's awesome. :dude:

Something else you could consider is contacting Dr. B. The MP doctor in Vancouver. He's expensive, takes about three months to get into, but will treat over the phone, too. Insurance coverage is the unfortunate issue, but he's one of the most experienced MP doctors.

It may be helpful to talk to other MP-ers who have RA that left standard medicines like you are on to find out what that is like so you know a bit about the journey. Some of the RA folks moved to MP from AP, but some have moved from standard medicines, too.

I have no idea if it would be easier to transition through AP first into MP or go to MP coming from the standard medicines. From what I observed in Ida Grove, you would stay on your current medicines until AP has started to work so you could slowly back off of the immune suppressants. I think there are others on this board who could speak much better to that experience.

Oh these decisions are so difficult, but you said it so eloquently to Amy in an earlier post that the internet is a wonderful tool so we can talk to the researchers themselves and make the most informed decisions. You have a really difficult decision and it is great that your husband is supportive of any decision!

Blessings.
Michele

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