I'm confused

[klogan]

In general, I'm doing well, at least I tell myself that. But foot and back pain are now chronic. I have no  idea if the back pain is even related to RA. And I feel like I'm  growing much more stiff. Anyone else have this experience with RA, or am I just aging? I just became menopausal. Maybe it's that? I never know what is RA and what is something else. It is so variable, and changes slowly enough that I am quite uncertain about what's going on.

Up until quite recently, I've done a lot of hiking, but now I find myself avoiding it without realizing. Because my feet hurt.

I'm not sure stretching realy helps, but I shoud be religious about it to give it a good try and I am not. I'm too angry but hope to move through the anger stage quite soon.

Got off the celebrex this winter, hate to go back on and never sure it makes a big difference. Not great with my diet and never able to tell if any diet stuff helps me. I certainly live in a lyme area, but not sure about the lyme tests since at the local lyme specialist, every tested person is invariably positive, every single one. Since I take doxy already, I kind of hope I have that covered. At one time, I took 300mg a day, so I hope any lyme was well and truly killed. I just don't want to spend so much time on my health! I know that's immature and unrealistic, but that's how I feel.

Okay, I guess I'm venting. So mainly I want to know if other people have the stiffness thing going on or am I just aging?

Confusedly yours,

klogan

 

 

[lynnie_sydney]

klogan – Firstly, a couple of questions for you. Was there any reason you started with doxy? And any reason why 50mg MWF?

In terms of being menopausal, this can increase overall stiffness and aches. Stretching is very good for this. You might also want to get your hormones checked. If it were me, I'd be going to a holistic doc for this – cos, if I was going to consider adding back in any hormones, I'd be going for bio-identical ones – most especially progesterone (the body still makes some estrogen after menopause, but not proegesterone and there is alot of thought that most of us tend to be estrogen dominant). In terms of being angry, short-tempered, low tolerance etc that also can be a sign of menopause. It affects some more than others.

With regard to your feet, do they hurt underneath, especially in the mornings and heel mostly ? If yes, it might be worth considering plantar fasciitis. I had this recently and cleared it with some simple daily exercises. Here's a link. Lynnie http://www.podlink.com.au/heel-pain.htm 

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)

[Parisa]

Klogan,

Sounds like you've gotten some benefit from AP but there is still more room for improvement?  Well, you can change up your protocol and increase the amount of doxy you are taking.  The no-fun food diet is always recommended.  And, of course, Lyme disease treatment.  I can see you being adverse to going to a Lyme specialist where everyone is positive but really good ones do rule out Lyme disease also.  I would say that anyone with RA who doesn't improve on doxy alone should really try a Lyme protocol.  I'm sorry to say that 300 mg of doxy is not enough to wipe out most strains of Lyme.  If it was, there wouldn't be all this commotion about Lyme treatment.  The good news is that if you are suffering from Lyme disease and get it treated you could get back to being your self again.

[Maz]

[user=87]klogan[/user] wrote:

I certainly live in a lyme area, but not sure about the lyme tests since at the local lyme specialist, every tested person is invariably positive, every single one. Since I take doxy already, I kind of hope I have that covered. At one time, I took 300mg a day, so I hope any lyme was well and truly killed. 

Hi Klogan,

You can vent as much as you want…we all get frustrated at times and everyone here understands. 😉 I think we probably all share your feeling that we don't want to spend so much time on our health, but sadly chronic disease has a way of making us sit up every day and take note. :crying:

Okay, so you live in NY, you hike and you have mentioned Lyme. Trouble is, even if on a high dose of doxy, if you have coinfections of Lyme, this won't be enough to cover those. Babesia is so common in our neck of the woods and needs anti-protozoals like flagyl, tinidazole, mepron, malarone, plaquenil, azithromycin, etc. Monotherapy is not enough.

The other thing is, most people in the NE probably have had some exposure to Lyme at some point in their lives, unless they live a cocooned existence. There are a ton of folk out there, walking around, and may never realize they have Lyme. They either have strong immune function or its just lying latent, waiting for an opportune time to come out of hiding. The researchers at New Haven Uni recently did tick drags of playing fields in Fairfield county and found that something like 95% of ticks were infected….and our kids are out there playing???

You've been on AP for a good length of time now and, if you are still suffering from troubling symptoms (that appear to be very lyme-like), then maybe it's time to go back to the drawing board, get the IGeneX labs run and go from there. There are some excellent LLMDs in and around NYC, so you're well placed to get treatment, if needs be. Would definitely be thinking, “coinfections,” at this stage of the game.

Sorry your back is hurting….RA normally spares the spine, so this is a good heads up to look deeper into Lyme, too. Where is your foot pain located? If in the soles or tendons, like plantar's fasciitis, you might want to do some research on bartonella, another common coinfection of Lyme. The fluorquinolones, like Levaquin, or Rifampin are the antibiotics of choice for this infection, though doxy and macrolide antibiotics have some effect (just maybe not enough in some cases).

Peace, Maz

[nspiker]

klogan wrote;

I just don't want to spend so much time on my health! I know that's immature and unrealistic, but that's how I feel.

:crying:That's me too….just want to get on with my life!  Unfortunately, sometimes we are forced to deal with our health, and make it the priority, if we want to be completely well again.

I've had chronic fatigue syndrome for ten years.  Used to have an extremely stressful, successful career, and was forced to moderate my life.  I pretty much lived a normal life with this diagnosis.  Along the way, had some “unusual” symptoms like faciculations (twitching), and other issues that were always attributed to CFS.  Now, with a sudden onset of leg and ankle pain, was diagnosed a year ago with ReA.  Tried AP for months, with no benefit.  Got tested for lyme, with the gentle prodding of those here, and tested Igenex negative.  Further lyme testing revealed an equivocal co-infection, babesia, and lyme.  I am now being treated for babesia by an llmd.  In just a few months of treatment, I have made improvements, but have a long way to go.

Looking back, I now am realizing that I probably always had lyme.  I'd been tested by a neurologist, a CFS doctor, a Rheumatologist, and was always negative.  Lyme is probably what caused my CFS. My hope is that lyme treatment will give me back my health again, not just the ability to “manage” my life, but actually live without any restrictions…..my hope for you too.

nancy

[klogan]

I moved to doxy after having a reaction to too much mino, or maybe too much mino and doxy. I was on both because my rheumy likes the combo. I then tried to address a flare by doubling my dosage of both and inadvertently brought myself up to 100mg of mino but 200mg of doxy. The combo brought on a med-induced lupus that took months to recover from. Now I seem to do best on under 100mg of doxy. Not sure how that will work with possible lyme treatment, but guess I have to cross that bridge when I come to it.

My feet hurt mostly in the ball and sore toes, the big toe joint the worst. But my calves tend to be tight, stiff and sort and I have tendonitis in one achilles tendon. Stretching absolutely is going to help with that.

Might look into the hormones.

Thanks for the answer!
kml

[klogan]

Maz, thanks for the great answer. I probably should really check into lyme. I have lived in NY state my whole life. As kids we were always covered with dog ticks. We used to pull them off, pick off their legs, and leave them to suffer. My mother was horrified and pronounced us monsters. Anyway, a couple of fears hold me back from looking into lyme:

• Insurance – don't think the lyme specialists or Igenex tests are covered and an initial consult around here is $500. So if I do it, I really need to trust the person and will come to you for a couple of names.[/*:3n98nrbc]
• Lyme medications – I am sensitive to mino/doxy and had a mino or doxy induced lupus reaction that was kind of scary. So not sure a full lyme dose of doxy will work for me. Also had a full body rash and depression reaction to plaquenil and am wondering what the other quinine drugs will do. But that was perhaps a herx – couldn't get the doc to agree to start on a really low dose. (That was my old rheumy – now I use Dr. W in Berkley Heights).[/*:3n98nrbc]
• Igenex – my rheumy is not a fan of these labs and thinks their work is not always creditable. But I have not researched this myself, and I very much respect your opinion.[/*:3n98nrbc]

So, I think what I should probably do is get a couple of recommendations for lyme docs from you and trust their recommendations about the medications and lab stuff.
I feel like I'm jumping down a large hole for some reason – taking a lot of time and money with me. But all the good wishes from this group as well.

Thanks a million,
kml

[m.]

This is just my experience….my joint pain has improved now that I'm taking a little progesterone. Other improvements are energy, mood, complexion…

[Maz]

[user=87]klogan[/user] wrote:

Maz, thanks for the great answer. I probably should really check into lyme. I have lived in NY state my whole life. As kids we were always covered with dog ticks. We used to pull them off, pick off their legs, and leave them to suffer. My mother was horrified and pronounced us monsters. Anyway, a couple of fears hold me back from looking into lyme:

• Insurance – don't think the lyme specialists or Igenex tests are covered and an initial consult around here is $500. So if I do it, I really need to trust the person and will come to you for a couple of names.[/*:3l4kz35b]
• Lyme medications – I am sensitive to mino/doxy and had a mino or doxy induced lupus reaction that was kind of scary. So not sure a full lyme dose of doxy will work for me. Also had a full body rash and depression reaction to plaquenil and am wondering what the other quinine drugs will do. But that was perhaps a herx – couldn't get the doc to agree to start on a really low dose. (That was my old rheumy – now I use Dr. W in Berkley Heights).[/*:3l4kz35b]
• Igenex – my rheumy is not a fan of these labs and thinks their work is not always creditable. But I have not researched this myself, and I very much respect your opinion.

So, I think what I should probably do is get a couple of recommendations for lyme docs from you and trust their recommendations about the medications and lab stuff.
I feel like I'm jumping down a large hole for some reason – taking a lot of time and money with me. But all the good wishes from this group as well.

[/*]

Hi KML,

Just a thought, but if the doxy was causing drug-induced lupus, you wouldn't  be able to tolerate even the smallest doses of it. My guess is that it was more likely the mino. I got DILE from mino, but have been perfectly fine on doxy. 😉

Your tick “history” (pulling tick legs off, etc.:roll-laugh: ) really speaks for itself. The area in which you live and a history of multiple tick bites is more than suspicious and builds a pretty strong case for having Lyme in combination with your symptoms. I'm no doctor, but a good LLMD would take all this into account in a clinical work-up.

I really do understand your fears and concerns, KML. No one wants to have Lyme or pay out of pocket, but until the politics of Lyme is cleared up, this is what all chronic Lymies are facing. 🙁 It really sucks. Thing is, if Lyme is left untreated (if you do indeed have Lyme), it's more than likely doxy will not be enough and you're going to continue being consumed by your health for years to come and this will cost more in terms of health, relationships, work, etc. I know it's hard to hear and just to contemplate, but it is just not worth messing with Lyme and its coinfections. The fantastic thing about LLMDs is that they use the full artillery to get us well again, so there are many alternatives that can be tried. The reaction you had to plaquenil may well have been a herx, but if you're afraid of using it again, there are plenty of alternatives to treat babesia and other coinfections.

Unfortunately, your rheumy (Dr W) as great as he is as an AP doc, is not Lyme Literate. :doh: Same goes for the two Dr S's and Dr F. These docs are fabulous AP docs, but low dose antibiotic monotherapy is just not enough. Neither is intermittant IV clindy, which (according to my LLMD) is likely more immunosuppressive than anything. The IGeneX labs actually include the same antibody bands as the standard tests, but also include significant bands that were removed when they were created a Lyme vaccine (that actually induced autoimmunity in some folk!). These antibody bands were removed from standard tests and never returned, so some of the sickest Lyme patients are actually being missed on these tests, which only have a 50% accuracy rate at best. This is why IGeneX is superior, but the trouble is that unless a doc is well-versed in the history of how standard tests were developed and “manipulated” by greedy physician-researchers, then they will accept the IDSA view that IGeneX is inferior. The truth is the exact opposite, in fact…IGeneX testing is more sensitive, because it's looking for additionaly borreliosis-specific proteins that standard tests aren't. Here is a link which explains a bit more:

http://www.lymenet.de/labtests/brenner.htm

My best suggestion, KML, is to get as boned up about Lyme as you can, researching all the Lyme Literate websites and this should help in making informed decisions about which way to go with this. It's a journey with Lyme, so one's heart really needs to be in it to face it head on. I know…what a bummer, eh? :X

I'll send you the full NY LLMD list in a PM.

Peace, Maz

[klogan]

Thanks to all of you for your kind replies. When I mentioned to friends that I was asking this community about Lyme, they basically told me I'd been in denial for a while and to get off my lower body part and look into it.

Also doing stretching and will look into bioidentical hormones in a bit.

Appreciate all the support and thanks a million,

klogan

[Author]

Posts