Very scared – Need some advice please…

[tbird2340]

Hello all! For those that don’t know my history you can see it in my sig..

About four – five months ago I was pretty much pain free.. I remember being at my last LLMD appt and telling him I was feeling good.. Well about two months ago my normal pains started slowly coming back.. Fast forward to about a week or so ago and I’m feeling the worst I’ve ever felt..

Things that never really bothered me are starting to bother me.. Last night and this morning *both* of my shoulders were noticeably sore and now tonight (went to bed at 8pm est – now 12:49am est) my shoulders are KILLING me.. I can barely lift my arms out forward.. I’m just scared how this all came on so fast and not only that can it get worse and will more things that didn’t really hurt go from 0 to 10 out of nowhere!!

I haven’t really added anything very recently as far as meds go.. I increased my mino since my last appt in November to 300mg per day but I wouldn’t think that would take this long to take affect.. Only other thing I added were two supplements (olive leave extract and curcumin) and those were a few months ago as well..

I can only imagine something similar has happened to someone on here before.. What did you do? My next LLMD appointment is actually Wednesday so that is good but I fear since he isn’t a rheumy maybe he wont’ know what to do and I just want to be prepared in case he doesn’t..

I don’t even have a rheumy and my LLMD is really the only one I go to for this.. He may have ideas on what to do but I just don’t know..

Any advice would be great.

Thank you,
Tom

[Maz]

@tbird2340 wrote:

About four – five months ago I was pretty much pain free.. I remember being at my last LLMD appt and telling him I was feeling good.. Well about two months ago my normal pains started slowly coming back.. Fast forward to about a week or so ago and I’m feeling the worst I’ve ever felt..

Things that never really bothered me are starting to bother me.. Last night and this morning *both* of my shoulders were noticeably sore and now tonight (went to bed at 8pm est – now 12:49am est) my shoulders are KILLING me.. I can barely lift my arms out forward.. I’m just scared how this all came on so fast and not only that can it get worse and will more things that didn’t really hurt go from 0 to 10 out of nowhere!!

I haven’t really added anything very recently as far as meds go.. I increased my mino since my last appt in November to 300mg per day but I wouldn’t think that would take this long to take affect.. Only other thing I added were two supplements (olive leave extract and curcumin) and those were a few months ago as well..

I can only imagine something similar has happened to someone on here before.. What did you do?

Hi Tom,

I know we’ve had a chance to talk already in the past week, but a couple more ideas have sprung to mind with these newly arising symptoms you’re describing.

I’ve only seen a couple instances where more than 200mg mino a day is used for RA, because it really does have superior tissue penetration to the other tetras and less is needed for the same effect. So, I’m wondering if you’ve got into a cycle of intense hypersensitivity. You can read about this here:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-14210

Essentially, it is a reaction to too much die-off. Any change in protocol can elicit herxing and, although you increased your dose in November, Lyme has a much longer life cycle (herxing can come in monthly rounds), so too much die-off can start off a vicious cycle of die-off causing inflam, too much bacterial toxin (antigen) being released for the body to dispense with and then these antigens becoming bound up in immune complexes (antibodies going after antigens, but getting glued together in the body and not doing much of anything). In my first year of heavy Lyme protocols, a similar situation happened for me where I became very hypersensitive and the only way to get out of the cycle was to have washout weeks and lower my dose.

Of course, I don’t know if this is what is happening in your case, as I am just a fellow patient, but having your LLMD test your C3D might provide more info on level of bound immune complexes you’re experiencing, if at all. Brown often had patients do “washouts.” I can send you a transcript of Brown talking about this and how he dealt with it in an email. If a higher tetra dose is needed in your case, asking your LLMD if you can switch to either tetracycline or doxycycline might solve the issue…or simply lowering the mino dose to 100mg BID.

Another thought is to get some labs run for DILE (drug-induced lupus erythematosis). Again, I don’t know if this might be happening for you, but it is worth having the labs run to see if it’s a potential. These would include:

ANA (if previously negative – would show homogeous pattern if other labs for DILE are positive)
Anti-SS DNA (anti-single stranded DNA is the marker for fake lupus)
Anti-DS DNA (anti-double stranded DNA is the marker for real lupus)
Anti-histone ABs (this would clinch a DILE diagnosis).

Also, if you have never had a lupus panel run, it’s not a bad idea to run it just as a matter of routine.

Perhaps others can chime in with further thoughts, but don’t forget to also look into blood iron levels which if too high can also mimic arthritis.

I’m putting it out there for you, Tom, that you’ll get some answers at your next appt. Please let us know how you get on.

[nspiker]

Hi Tom,

That is so frustrating to be taking a BIG step backward, and feeling so awful! Thankfully, you have your LLMD appt. this week. Let us know what he feels is causing the increased pain and possible herxing. I wouldn’t worry about not having a Rheumy as LLMD’s commonly treat patients with autoimmune symptoms.

My only suggestion is to back off the medication, and add one at a time to determine the cause of the reaction. It sounds like you are already doing this, and are perplexed, because meds were changed three months ago. Why now all the reaction? I wish I had some great advice, but I don’t. The only thought might be to see if you could incorporate Plaquenil into your treatment, as it is also used for autoimmune disease and is an anti-inflammatory, as well as an anti-malarial used for lyme and babesia.

Give us an update on how you’re feeling, and what the LLMD says…
nancy

[tbird2340]

Thanks much for the replies guys! 😀

My shoulders calmed down during the day but I’m still scared to go to bed tonight as that’s when all hell seems to break loose!

I’ll post back tomorrow and let you know what my LLMD says..

Thanks again!

[PetRescue]

Hi Tom, I’m just throwing two things out there to consider. I know whenever I flare it is usually due to diet. Valentine’s Day was killer for me this year. Just can’t resist those cute heart boxes full of evil sugar! Sugar and gluten get me every time. Yesterday I was back to no sugar and this morning I’m fine.

Also, doesn’t Lyme synch with the moon phases or something? I think I remember Maz talking about it on the old board and that maybe could explain sudden flares. I don’t really know much about it, but just another thought!

Glad you’re doing a little better and I agree, don’t waste your energy with a Rheumy unless they do AP. They won’t have anything good for you anyway. Good luck today!

~jen

[nspiker]

Tom,

Are you ok? What did your LLMD say about your pain? Let us know how you’re doing….
nancy

[tbird2340]

Sorry for not posting back until now!!

I’m doing better.. Thanks so much for asking. My LLMD didn’t change any meds.. Still on 300mg per day of Mino, the 1000mg per day of Clarithromycin, and the Nystatin..

All my labs from this past draw (3 weeks ago) looked good. However, none of them were RA labs.. I just got those drawn yesterday along with ANA labs too.. My gluten test from Enterolab came back positive so I’m going gluten free, again.. He also wants me to drink 96oz of water (was only drinking like 24oz a day before) and watch my sugar intake..

I brought up plaqueniel but he doesn’t like ANY toxic drugs (or any drugs for that matter), which is one of the things I like about him.. I didn’t push for it or I’m sure he would have prescribed it.. I didn’t push because I wasn’t in major pain like I was the night I posted this.. If I was still in that type of pain I probably would have been asking for morphine. 😀

He also told me to get Hyaluronic Acid which I’ve ordered. He did say the lyme was in check so that is good..

So, we’ll see how it goes with drinking a ton more water and watching closely on my diet..

Thanks for caring and thanks for the replies everyone!

Tom

[lynnie_sydney]

Tom – good to hear from you, glad things have settled also. (BTW, I’ve had the seized-up-frozen-shoulders-agony-spend all night in a chair cos I cant move-em or lie down on em- so I can relate 😯 😯 !). My doc wont hear of plaquenil either and also recommends the same amount of water as your doc (96 ounces/3liters approx).

Also, re the gluten – way back I got a good tip from my doc. I told her that I was eating well and every 4 hours but was still feeling very hungry. She said I must be getting hidden gluten from somewhere and I was. (e.g. instant coffee uses gluten in the processing but it doesnt have to be declared as an ingredient and the choc sprinkle on capuccinos has both gluten and dairy in it.) These days, if I ingest gluten, my stomach becomes distended within a couple of hours, so it’s really easy for me to tell.

Interestingly, I have been thinking about hyaluronic acid myself as an addition to my supps also. Wondered about the new Mercola joint/connective tissue supp for this, which includes hyaluronic acid. http://products.mercola.com/joint-support/.
Let us know how your RA labs go. 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)

[Rockin Annie]

Hi TBird,

Sorry to hear about your setback, hopefully you will get on top of things soon. I too have been doing searches on Hyaluronic Acid, you have just given me an extra push.

……….Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Author]

Posts