Feeling lousy & needing advice!

[laurawm]

Thanks John, I have a rheumy appt. this week as well as an appt. with an alternative medicine doctor and will mention these thoughts. My hesitation with thinking I may have AS is I have not had significant spinal involvement, and I thought this was a hallmark of AS? Regardless, I’d be happy to learn your protocol if you’d like to PM me or write it here. I have historically had some IBS symptoms (mainly intestinal pain) but never diagnosed.

I’ve read a lot about going grain free – ah! I don’t like to think about this as I love grains (carbs!) but I do feel much better regardless of the RA when I eat mostly veggies and protein. I actually own a specialty food company with several amazing flour based products (oh the irony of life). I haven’t quite figured out how I am going to move forward with all of that at the moment…

Thanks again…I’ll look into the HLA B27 test.

Laura

[Krys]

Hi Laura,

Sorry for the late reply. I’ve been taking over a week to actually post it. I’m having severe and painful uveitis and can’t stay at the computer long. Even with painful eye closed, the computer glare is still causing pain.
I think you are very lucky to have received John’s reply. I would trust his experience and knowledge more than the average rheumy’s.
@laurawm wrote:

My hesitation with thinking I may have AS is I have not had significant spinal involvement, and I thought this was a hallmark of AS? ….had some IBS symptoms…

Laura, I don’t remember the details of how AS starts, but I believe none of the rheumatic diseases starts full-blown?

The below is what “jumped” at me:

@laurawm wrote:

It was the day that the ear infection was the worst that I began minocycline. I took three 100mg capsules over 36 hours and the next morning I was so dizzy ……I still had some dizziness, but there were days where it felt almost gone. …..I have not taken the mino in four days. ….the dizziness is part of ongoing inner ear infectious ….. part of a herx.
….the colostrum and possibly also coconut oil taken internally can bring the dizziness on – though to a lesser degree than the minocycline.

….Part of me is concerned that I should not be taking minocycline if indeed the dizziness is related only to the drug, as it would mean that I am not clearing it out of my system well and might be susceptible to DIL?
Oh, and I’ve started coconut oil a couple Tbs. a day since I’m giving the mino a break. My joints feel pretty good, not perfect, but after being nearly completely disabled, a few transient aches seem tolerable

Laura, I think you have answered your own question! 😉
You were already herxing, you took mino while having an ear infection (I wonder if it was really an infection or a strong herx within the ear due to some die off?)…..dizziness was sometimes almost gone while still on mino…..while off mino, dizziness seems to be also triggered of by colostrum and coconut oil….
While reading your description, it all seems to be related to inner ear and some problem there. You were taking minocycline for a very short time, while herxing and having an ear problem, so how could it be the result of DILE? I am only a patient who is new to minocycline, but by being on the forum I read Maz’ explanations of Mino induced Lupus many times. You can search within Maz’ posts for DILE and maybe it will help calm some fears. We all are inclined to panic when things go wrong, and herxing, being in pain, dizzy and tired while taking care of 2 active children is a LOT! Maybe your guess is right, but if only 1 patient in 10000 experiences DILE, herx seems to be quite a plausible answer.

Laura, I know it is not always easy, but be patient and kind to yourself and rejoice that things have improved so fast! From “being nearly completely disabled” to “a few transient aches” seems fantastic!!!

I was dizzy during my first month of doxy (really just 2 weeks, as my first 2 weeks was pure “honeymoon” time) and then it completely resolved. Now on minocycline (after a few months break from abx) dizziness started after 10 days of daily minocycline. Very normal time frame for herxing. Combined with nausea, metallic taste in the mouth and some pain, it feels yucky. But I know it will pass. And when it gets better, I am going to increase the dosage to the one prescribed (100BID) and add 250 Azithromycin daily, 7x week. I was supposed to start all at once, but I am also on herbal protocol, so I am taking it slowly. I’ve noticed that Vit. C helps me with dizziness. The day I posted about dizziness was the day I forgot to take my Vit. C. I take Buffered C (in the morning and at noon, as its calcium content seems to interfere with my falling asleep at night) and at night I take 1tsp of regular ascorbic acid + 1/3 magesium citrate + 1/2 baking soda dissolved in water with bilberry and acai powder and fruit juice added for taste and bioflavonoids) and I can really feel it’s immediate positive effect on my body. It’s funny, I can feel the “fizz” within my brain, too. It’s pleasant and somewhat subtle but obviously its antioxidative effect is needed within my brain, too.
Still a little dizzy, but more spaced out kind of dizzy.

It’s great that coconut oil has helped you with pain! I get a severe herx from it.

I’ve read your initial posts and noticed you were taking Cat’s Claw, too. If you started with the full dose, it could cause a severe herx reaction. Stephen Harrod Buhner advises to start with 1 cap 3x day during the first week, 2caps 3x day 2nd week, 3 caps 3x day 3rd week, 4 caps 3x day 4th week, 4 caps 4 x day from 5th week on.
Cat’s Claw crosses BBB, so it will work on the infection in the brain /ear and many people experience herx while on it.

Just my patient’s guess. My guess is just a guess, maybe wrong in your case….
Warm wishes, Krys
P.S. When the reply was originally written, I was still a little dizzy. Now, a week later, my dizziness is completely gone. Still on daily Minocycline and for the last week on daily Zith, too. But we all react differently. I hope that your dizziniess is over and that the herx has lessened.
Are you helping yourself with detoxification?

[laurawm]

Hi all, Hi Krys. 🙂 Thanks for all your thoughts. I’ve been out of town and actually had a difficult week (more vertigo, intense fatigue – realizing I can lessen these attacks by drinking TONS of detox tea continually when I first feel it coming on).

I had two doctor visits last week. The rheumy told me I should consider a biologic… despite the progress I know I’ve made, he seems dismissive of it all and says I still have many swollen joints despite the fact that many he cited are not painful and do not seem swollen to me. Sigh. I did find out some of my numbers at the time of diagnosis back in January…

SED Rate 33 (November) 22 (December)
RF 115
Cyclic Citrullinated Peptide (CCP AB IGG) >250 (considering >59 is considered a strong positive, and they do not measure above 250, I’m thinking this is not good news 😯 )

Doctor number 2 was actually an integrative alternative doctor recommended by the Road Back (thank you!). Interestingly he offers both bio-identical hormone replacement and sequenced amino acid/peptide (SAM) treatments. He seems to favor some intensive supplements (I purchased Biacalin and Itis Wise from his office – do not know a ton about these, but am now taking) and other alternative treatments such as autohemotherapy (injection of one’s own blood back into oneself with the idea that it works like a vaccine where your body goes to work on the antigens within one’s own blood – I tried this at his office, and felt some relief, though he recommended weekly treatments, which I cannot do now as his office is near my mother’s home, hours from my home) electromagnetic treatments, and SAM if other treatments do not work (as SAM is expensive). His view of antibiotic treatment is that many people end up with yeast and other side effect issues, so if he can find something else that works, then that is what he prefers. This sounds good, but I have to say, he seemed like it was not a big deal for me to give up my sulfasalazine and mino if I was faithful with the other supplements he recommended and the real life translation of this is huge, at least in my case. I have reduced my SSZ by half (now on 500mg BID) and let me tell you I can tell a difference. My feet are swelling and I have much more pain. I’m not sure what to do about this – do I need to be off this med? I keep thinking that if it is immunosuppressive (which no one agrees on in addition to the fact that noone agrees on how/why it even helps to begin with though some of it seems obvious to me), then in order to retrain my immune system, I must ultimately come off it – but I can’t help but also think that this doctor must not actually know anyone in “real life” with RA, because quick med switches and resulting flares are no joke. For me it is downright scary as I look at my feet changing shape over time. Blah. I do not like RA – or whatever this is that I have. 😐 Mind you, I don’t dislike this doctor, and he offers lots of options, which is great – I just sometimes feel like there is a disconnect with reality when it comes to doctors treating patients based on books and research, and not necessarily personal real life experience.

So, I’ve had a rough week of vertigo and fatigue, but am beginning to find my way out through detoxing – just confused as to whether I should keep my SSZ dose down (I actually feel better as far as fatigue and dizziness, other than my joints, on a lower dose). Also, though it is getting better currently, I have had a pretty stiff neck over the past two weeks – all of this with the vertigo and so many of my major joints involved still keeps me thinking there is more than just RA going on here. I did have the doctor do a very detailed food sensitivity test, so that will be interesting when I get the results.

Ah, I don’t feel like a good mom right now. Sometimes I just want a break. Sorry to vent so heavy – guess I’ve been frustrated. Thanks everyone for providing support and knowledge.

[lynnie_sydney]

This sounds good, but I have to say, he seemed like it was not a big deal for me to give up my sulfasalazine and mino if I was faithful with the other supplements he recommended and the real life translation of this is huge, at least in my case. I have reduced my SSZ by half (now on 500mg BID) and let me tell you I can tell a difference. My feet are swelling and I have much more pain. I’m not sure what to do about this – do I need to be off this med? I keep thinking that if it is immunosuppressive (which no one agrees on in addition to the fact that noone agrees on how/why it even helps to begin with though some of it seems obvious to me), then in order to retrain my immune system, I must ultimately come off it – but I can’t help but also think that this doctor must not actually know anyone in “real life” with RA, because quick med switches and resulting flares are no joke.

Hi Laura – sorry you are having a rough time of it and receiving some pretty mixed messages. If it were me, I’d be weaning off the ssz extremely slowly. When I was first put onto it (details in my testimonial, link in my sig line) I was told they werent exactly sure why it works (Of course I now know that it is most likely its antibiotic properties) and I was rxd it simply because my palindromic symptoms did not respond to anything in terms of NSAIDS or to cortisone, I may as well have taken sugar pills. As it worked for me and I became symptom-free, I started to taper down the dose over time to just a maintence dose of 1 pill a day, before I eventually took myself off it – and those were the days before I’d heard of AP and started mino.

BTWm, SSZ is not supposed to have immunosuppressive action – see below

In Crohn’s disease and ulcerative colitis, it is thought to be an antinflammatory drug that is essentially providing topical relief inside the intestine. It does this via a number of mechanisms such as reducing the synthesis of inflammatory mediators known as eicosanoids and inflammatory cytokines. However, unlike glucocorticoids (another class of drug used in the treatment in inflammatory bowel disease), sulfasalazine has no immunosuppressant action.

http://en.wikipedia.org/wiki/Sulfasalazine

Any changes in protocol are likely to cause rebound effects, which may be what you are experiencing now versus a return of symptoms. In any event, I’d be taking the mino for a good while before I tapered the ssz and I would do that very slowly to minimise rebound effects.

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)

[Valsmum]

Hi Laura,
I’m sorry you are in pain, I too started getting symptoms during my last pregnancy then 6 weeks postpartum I was dxd with RA. I cannot eat any starches without it REALLY affectig my pain, can’t do sugar, dairy or nightshades, however I do cheat on the last 3, but the starches put into the worst offlares and lenghty ones, whereas the sugars and nightshades do not put me into long flares.
I reall hope you start feeling better, can’t offer much advice about meds, but just thought I would chime in about diet . Take care!–Sheri

[laurawm]

Hi all – especially everyone here on this thread that took the time and care to give me feedback and encouragement. I wanted to write a quick (hopefully!) update and let you know how things are going.

Right now I am in the closest state to remission 😀 that I have been since this all began well over a year ago due to a recent (last Thursday) peptide shot – but I’ll get to that in a minute. After the last update I had extensive testing completed showing that I am sensitive to dairy, wheat, and anything and everything having any type of yeast. And my yeast antibodies were off the chart. Needless to say, I was having difficulty with yeast throughout my body and went off of both minocycline and sulfasalazine. During the deep fatigue episodes I was having, I began to notice that I was having diabetic symptoms such as urinary frequency, lethargy, and difficulty with bright lights, and began checking my blood sugars and sure enough, they were elevated during these episodes. Funny thing, though, was that researching candida, it seems candida can cause these diabetic issues as well as stiff neck and extreme fatigue. Perhaps many of the episodes have been related to yeast – part of me wonders if it is at the core of my issue, but deep down I think it’s more complicated than that.

Anywho, I’ve stayed on multiple antibacterial supplements (colostrum, monolaurin, turmeric, boswella, cat’s claw…), but it was just not controlling the joint damage even though I remained overall functional. I saw Dr. W again in Asheville last week and he evaluated me for a SAM (sequenced amino acid) peptide shot. He went over my labs with me saying that my results do not portray a “typical” RA (???) and that it appears there must be something going on in my gut related to my whole system (I have been having fairly regular diarrhea in addition to yeast issues despite taking mega doses of probiotics and being off mino and SSZ for a month). I requested an Igenex Lyme test and he said he prefers a different test (can’t remember the name at the moment – will try to update), so I went with his recommendation (hope it’s good because it was not cheap). He also did autohemotherapy on me where he injected my own blood back into deep muscle tissue. This was my second time doing this and it actually does work, and for some provides a cure after a few shots, though for me, the effects have not lasted more than 12-24 hours, but during that time it is an almost complete remission. It acts by sending one’s own immune system to work on the antigens in one’s own blood that are recognized as foreign when injected back in. He then said I could do the peptide shot (which he said he chose a broad spectrum combination rather than the typical RA shot due to his belief that I have a large host of antibodies swirling around in my system wreaking havoc). He is waiting for a stool result test to recommend further antibiotic type treatment.

Well, the peptide shot hurt. But within 15 minutes, pain and swelling was reducing. Within one hour almost gone. 24 hours pretty much gone – just barely a little swelling still behind my right knee. Almost four days later, I still feel good. My fingers and toes are skinny! I had forgotten. I do have a lot of pain in my toe joints and some in my knees from damage… maybe it can still heal or not hurt so much eventually? I hope these shots keep working. They are expensive, but the doc says he’s seen many people go into a permanent remission after several shots – wouldn’t that be amazing? Interesting thing is that when I take colostrum and monolaurin now, I still feel a herx – intense fatique – just no allergic swelling response.

I believe I have an infectious something throughout my system, and I need an antibiotic, but right now I cannot do mino (incidently the vertigo did subside to the point that I could take mino with almost no vertigo – this leads me to believe it was definitely infectious and caused by a die off which also explains why I felt it after taking colostrum.) I do believe the colostrum and monolaurin (derived from lauric acid in coconut oil – said to be effective against borrelia?) can be effective, though it is more difficult to know how much to take and what course to follow with these as there is less research giving direction.

In the middle of all of this I got a bite of some sort (did not see the insect) on the back of my knee that itched like crazy and ended up with some kind of faded circle surrounding it, but it was never very distinct or defined. I am glad I got the Lyme test sent off, though if this recent bite was an issue, I do not know if it would be in my system enough to show up on the test.

Wow, that’s a lot. But I wanted to say thanks again to everyone and I am still reading and learning from all who contribute here. This has truly been my support group since this all began.

Laura

[Parisa]

Laura,

So glad to hear that you are finding some relief. It’s amazing how abnormal can become your new normal and it isn’t until things improve that you realize the extent of the problem.

[laurawm]

Thanks, Parisa – I appreciate that. Part of me is afraid to get too excited as I know there are many ups and downs yet ahead and I am not feeling in complete remission, yet I am thankful for this improvement and thankful to have found some treatments that seem to be heading in the right direction at least.

God bless.

Laura

[cavalier]

I requested an Igenex Lyme test and he said he prefers a different test (can’t remember the name at the moment – will try to update), so I went with his recommendation (hope it’s good because it was not cheap). He also did autohemotherapy on me where he injected my own blood back into deep muscle tissue. This was my second time doing this and it actually does work, and for some provides a cure after a few shots, though for me, the effects have not lasted more than 12-24 hours, but during that time it is an almost complete remission. It acts by sending one’s own immune system to work on the antigens in one’s own blood that are recognized as foreign when injected back in. He then said I could do the peptide shot (which he said he chose a broad spectrum combination rather than the typical RA shot due to his belief that I have a large host of antibodies swirling around in my system wreaking havoc). He is waiting for a stool result test to recommend further antibiotic type treatment.

Hi Laura – glad you are getting some relief. I feel any relief is good nice to get a break & hope those breaks eventually get longer. Couple of ?’s –
What is the Lyme test you had? I just got a IGNEX test done waiting for results so would love to know for my info.
BTW my peptide shot burned too. It is a SAM – DR 101114 – I was told this is quite one in demand used for many things it maybe the same or not but you can ask in passing this on. It is for stopping making of antibodies for sure.
Yeast & leaky gut certainly can contribute to this issue for sure. This is why I like the HBOT as it is antiviral & antibacterial – as I have had so many viruses in addition to bacterias. I almost dont care anymore which ones they are specifically as long as i can use something that can address both. I did Lauricidin for quite some time – it helped but but it needed other things along with it for me was never enuf on it’s own. I contacted the company & was told 3 times a day 2 scoops each time but as I said not enuf for what i had going on. I use Colostrum by Designs for Health Whey Cool has amino acids in it which are good but I didn’t take this for 2 wk’s ahead of the peptide injection or that day.

Question for this doc is Autohemotherapy the same thing as Plasma Rich Protein? or PRP – it is supposed to help your immune & some people use this in conjunction with other things like HBOT.

Is the stool test thru Great Plains Labs? I had a doc who wanted to do a stool test – for heavy metals I think it was – is that the objective for you or something else being looked for? I am getting any metals out by chelation & I have the last 2 metal based crowns coming out this coming Thurs – having gotten 2 crowns like this out last month & one silver filling taken out.

Interesting stuff!

Best – Jill SD

[Parisa]

Laura,

With all of the diet issues you are having, you might look into the specific carbohydrate diet or gaps (which is a variation of scd that doesn’t have any dairy in it unless you can tolerate it). http://www.gapsdiet.com This diet focuses on eliminating the bad bacteria in the intestines through diet (no sugar, grains, lactose – in a nutshell no polysaccharides) and probiotics to let the beneficial bacteria flourish.

[Tlpitts]

You will get much farther with a regular doctor than a rheumatologist . I remember showing my last rheumu doctor that in my 2010 nursing drug book under minocycline that it was also given for the treatment of rheumatoid arthritis and that YES it is used for it and he said he never heard of it. part of the reason they don’t like minocycline is that you don’t need them to get it at all any regular doctor or nurse practioner can write you a script for it. By the way I can’t eat pizza unless I make it my self it’s not just the glutton it’s the salt and the corn oil and the acidic meat. I feel for you I am having a bad time myself and have been for a few weeks but today I feel great better than I have felt in a while you will get a lot of support from the roadback people . I am in the medical field so I can tell you that they have found no cure for autoimmune disorders but I have treated a lot of people in the hospital with severe and I mean severe reactions from the drugs given by rheumatologist .

[laurawm]

Hi – thanks everyone for your thoughts. Long day today and feeling like I need another peptide shot two weeks ahead of schedule. 🙁 Sigh. I don’t feel terrible and I am not stiff, but I am having some swelling and I am learning that, at least in my case, swelling = quick joint damage I can see within 1-2 weeks. I am going to e-mail the doc tomorrow and see what he advises as far as the shots go and possibly going back on sulfasalazine – though I think that SSZ may be contraindicated with the SAM shots as it may be an anti-metabolite in the same way methotrexate is in that blocks the metabolism of folate (everyone says they don’t know why methotrexate or SSZ work, but my layman logic says that inhibiting folic acid metabolism stops the growth of organisms so both may be working in this way as an antibiotic, especially since methotrexate and SSZ statistically are equally effective at controlling joint damage from what I’ve researched, each with their own separate set of potential side effects – also interesting is that I’ve read many report a short herx like increase in pain/swelling after each methotrexate dose before subsequent improvement).

Jill – I wish I could remember the name of the Lyme test! I should be talking to the doctor in the next couple of days and I’ll be sure to ask – I still think Igenex is good – I just went with what this doc does since he seems to have a methodology and reason behind each test he offers.

My SAM shot was/is SAM HS – not sure what that means but the doctor said it was broad spectrum.

Autohemotherapy is simpler than PRP – no separating any parts of your blood – just draw out of your arm and then stick back into each hip. It is supposed to work like a vaccine where your body is exposed in a limited way to an antigen and then creates immunity after several shots. This is a great treatment if effective because the cost is $30 a shot vs. $300 for SAM shots. When I actually move to Asheville at the end of the summer, I may continue this to see if there could be some cumulative effect for me.

The stool test is through Great Plains Lab I believe and the doctor ordered this as a comprehensive pathology/bacteria/parasite analysis of my gut as it may relate to my overall disease.

Glad to hear the peptide is helping you in some way! It has definitely helped me, but the effects are now waning… I hope that they will build on each other and I can go longer between needing shots in the future – otherwise this will not be affordable long term.

Parisa – Thanks for the recommendation – I’ve heard of the Gaps diet but have not looked into it recently. I know I do better the less sugar I eat – as it is I am on a very low carb diet with no gluten and not even gluten free bread/baked goods due to no yeast, but I do eat dark chocolate as a treat – it’s all I have left! No cream even in my coffee. I am still struggling with yeast – maybe some of the supplements I’m on kill good bacteria. I’ll look through the website you referenced – a diet guide would be helpful as I’m not enjoying food very much right now. I need to relearn how to cook different kinds of food.

Tipitts – Thanks – I surely hope so. I am worried about my joints. The pointer finger on my left hand is already leaning towards my pinky and my feet are all kinds of shapes depending on the day and level of swelling. I need to get it all under control – I so do not want to suppress my immune system, but most of what I’ve tried so far seems to have it’s fair share of draw backs – $ being the primary drawback to the peptide shots – makes me so mad that they are not widely available and covered by insurance – we live in a crazy world. God bless.

Laura

[laurawm]

I should also mention that it is advised to not take a SAM shot when you know you have or are coming down with an infection – if most RA is infectious, this is a bit ironic, but I think it means acute infection. The doctor decided to go ahead and do my shot despite my yeast/candida issue, though this is known to effect it – and perhaps that is what is going on with some of the effects wearing off. I have thrush in my mouth right now and know I am still fighting the yeast in my body.

[Parisa]

Laura,

If you need some inspiration, here are some sites that might help:

This site is beautiful even if you never cook any of the recipes!
http://www.roostblog.com/

Not all of the recipes here are GAPS but it’s also a nice spot:
http://milkforthemorningcake.blogspot.com/

This site is grain free, often times dairy free and sugar free:

http://www.thespunkycoconut.com/

http://nourishedkitchen.com/recipes-2/

My son and I are about two and a half months into GAPS ourselves. Giving up chocolate was hard (although at some point you can have unsweetened cocoa with honey). I’ve learned how to make a good banana bread, carrot cake and lemon cake as my son is a teenager with a very strong appetite.

[cavalier]

Hi Laura –

Many thanks for the great info.

I am supposed to do the Great Plaines stool test I need to go their website for instructions or call them, as the lab sent me the kit with no instructions. I think the hope is it may offer some info or rule in or out and give a idea how well my GI is working of course leaky gut has a player in any disease to a degree I think.

I am feeling some reverting to hand cramping last nite & today, but I know it can take months for this to begin to build up so to speak in our system I know this didn’t happen overnite so i expect a unraveling process so to speak as long as I can hold my ground & not loose ground this is why I feel using more than one modality is hedging the bets.

I find the blood injections interesting – cant see the term right now, but thanks for the differentation.

Something got stirred up as I wound up with alot of congestion & a fever on Friday day after the shot could have been coming down with it anyways hard to say. It went into my left ear then also into my teeth & cheeks knew a sinus infection – so I have to squeeze in AP for days to try to clear this before I have to take the shot again on Thurs – to give me 3 days off from AP in order to take the shot on time one week later – then it is to once a month. Am going to continue with the HBOT as well.
I hope you can get down to this with your Asheville doc.
Best – Jill SD

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