Questions, feeling overwhelmed!

[mkay]

Ok. I need some good advice. I just had a doctor’s appt Thur. waiting on test results which will be done Tue. Only one result was in Friday which was my sed rate and it was a 3.

Like an idiot I stopped mino. Things have exploded with me, my main concern is I have a middle finger that will NOT go down more than halfway to my palm and it is causing me major stress, I can feel almost like a nodule on my tendon and it is just stuck maybe? Has ANYONE had this and it gets better?! So to explain it better my middle finger joint (closest to palm on top of the hand is swollen) then you flip my hand over and it looks like the tendon leading down from my middle finger is super tight and swollen also. PLEASE tell me this can be fixed..

Here’s my other stressor. They more than likey will say lyme is neg and ra positive, IF so and they want me to go to a rheum. is it OK to go on medication for ra if you also have lyme? I’am so confused but I have to do something this cannot go on. Can you go on soething and add mino in with it maybe? HELP! ADVICE welcome.

One more thing they gave me 20mg of pred for 7 days. I have never taken a steroid ever…..it’s not working! Could this be because it’s lyme and not RA?!

[Maz]

@mkay wrote:

Like an idiot I stopped mino. Things have exploded with me, my main concern is I have a middle finger that will NOT go down more than halfway to my palm and it is causing me major stress, I can feel almost like a nodule on my tendon and it is just stuck maybe? Has ANYONE had this and it gets better?! So to explain it better my middle finger joint (closest to palm on top of the hand is swollen) then you flip my hand over and it looks like the tendon leading down from my middle finger is super tight and swollen also. PLEASE tell me this can be fixed..

Hi MKay,

Just going by your description here, so I may be off the mark…just a fellow patient.

Any chance you may have a Dupuytren’s nodule on your palm causing contracture? These commonly occur on the middle and ring fingers in those predisposed and can occur with or without rheumatic disease. This would cause the tendon running down from the finger (palm-side) to appear stretched – see pic at following link:

http://en.wikipedia.org/wiki/Dupuytren%27s_contracture

If so, it might be incidental to a recurrence of your RA that your joint is also swollen. I started with Dupuytren’s (a nodule under my ring finger on my left hand) within a month or so of getting swift onset, severe RA. It never got any bigger and I don’t have contracture with it it (touch wood), but it runs in my family, particularly among the males on my Dad’s side. I have read that NAC is used as an alternative treatment for Dupuytren’s nodules and I also do Glutathione IVs. However, anything that breaks up fibrotic tissue, such as systemic enzymes is also helpful, which I also use. There are injectible drugs now (collagenase enzyme drugs manufactured from a bug called clostridium histolyticum), but as RA is a disease that creates antibodies to collagenase (anti-collagenase) which breaks down joints, I would run for the hills if this is suggested, as it would likely create more in the way of joint destruction in the hands and possibly elsewhere. All this may be totally moot, though, if this is not what is occurring in your case.

If this is not the case, then, yes, hand contractures in RA do reverse with treatment. Both my hands were severely affected by RA and I was unable to clench my fingers into fists or hardly bend my fingers at all, which were all frozen in one position for many months. I had hand therapy and, as things improved on abx therapy, my fingers returned to normal and my hands have been great since.

Here’s my other stressor. They more than likey will say lyme is neg and ra positive, IF so and they want me to go to a rheum. is it OK to go on medication for ra if you also have lyme? I’am so confused but I have to do something this cannot go on. Can you go on soething and add mino in with it maybe? HELP! ADVICE welcome.

Do you suspect Lyme disease? If so, then the type of doc to see is a Lyme Literate MD. I had two bulls-eye rashes and my standard Lyme tests were inconclusive. Not everyone sees a tick and only 50% of folks will get a bulls-eye rash, which is why diagnosis can be a challenge with conventional docs. A LLMD can do a comprehensive work-up and assess you for Lyme and other tick-borne infections, relieving you of any stress about this. The thing about Lyme and RA is that it’s not necessarily one or the other, but both. Here is a video that can explain how Lyme and coinfections can look like AI, mimicking or triggering it:

envita.com/conditions-we-treat/lymedisease

If you need a LLMD list, we can send you what we have for your state, though it may involve travel, as some states are better off than others for providers.

Usually, LLMDs prefer that their Lyme patients are not immune-suppressed, because the infections are already immune-suppressive (or compromise immune function).

One more thing they gave me 20mg of pred for 7 days. I have never taken a steroid ever…..it’s not working! Could this be because it’s lyme and not RA?!

Prednisone is a generally considered a big no-no as it just allows infections to proliferate.

Your SED rate is on the low end of normal range. Was your CRP also measured? In the case of Lyme, there can be a paradoxical lack of inflammation or a great deal of inflam, but if it’s only the one finger that is affected, then is it possible that you are just suffering from a Dupuytren’s contracture?

It’s a good idea to read the ILADs and Burrascano diagnostic and treatment guidelines for Lyme, because Lyme treatments are quite complex and usually involve a combination of approach of either oral abx only or orals and IVs, plus various supportive adjuncts for immune function, detox, etc.

http://www.ilads.org/lyme_disease/treatment_guidelines.html

Did you stop the mino before as you had reached remission? If so, it may well be that you will do just as well a second time around and not need a LLMD. Mino is a DMARD for RA, so there is no reason why a rheumy wouldn’t supply it again, especially if your response was good before. Some people do need to remain on a maintenance dose in order to maintain their remission.

[mkay]

MAZ~
Thank you for replying, I’ve always loved your advice. I have had ra for 15yrs, have been on doxy and mino each, some. Not faithfully though. The joints affected over 15 yrs are…..one wrist..one index finger..one toe. What has sent me into a spiral is my middle finger along with the joint I feel like tings are starting up again and I’am scared to death to be honest….I DO NOT want to be deformed. My doctor said thur. I obviously have a slow moving disease or I would be in a wheelchair by now…I don’t know I have three kids and to be honest I don’t want to wake up and think about my joints daily I’m almost ready to cave and go to a specialist and just get meds along with mino. My ra seems to be in my hand tendons ALOT. Anyone else have this?

As far as the lyme goes, they did a western blot just to make sure…I should know this week.

Another thing that has brought me to my knees is I contacted a lady out of the arthritis breakthrough book. She is not on minocin alone and never has been, nor can she bathe herself! I’am only being honest and I pray this doesn’t offend anyone because I do believe in this, always have. It has just REALLY scared me……

[mkay]

Also Maz I don’t have a nodule sticking out I have to push on the tendon move the finger back and forth to feel it, could this still be that kind?

[lynnie_sydney]

mkay – I have had the same thing happen to me not that long ago. The way I dealt with mine (which also involved my fingers suddenly swelling) was to really go hard on de-toxing. That also included broken-cell wall chlorella which is really good for binding with any nasties (mercury etc) and getting them out of the system. I was also super-careful with my diet (already pretty strict) and drank loads of filtered water to help things flush. My hands resolved in about a month. I stayed on the protocol I’m on through all this – and just upped the de-toxing. Personally (and it’s a very personal decision) I will not touch any of the cortisone/prednisone steroids. If it takes longer for me to get back on track, then so be it.

Another thing, my fellow patient perspective is that you need to decide whether you really want to go the AP treatment route (or Lyme if that’s what it turns out to be) and then really stick to it, find yourself a doctor with whom you can work and expect to have to tweak as you go, as nothing in life remains static. This is not a fast road, it’s the opposite but it IS a road towards greater wellbeing without the side effects of the more toxic meds. I can say this after dealing with it all for over 25 years and being in pretty darn good health for most of that time. I started on monotherapy (just mino) then moved to a combination protocol after 4.5 years.

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)

[mkay]

You’re right Lynnie I do need to decide. Thank you. It’s just very scary. I’am going to get my results this week and see what exactly the tests say and go from there. Any suggestions on the mildest DMARD that you could take with Minocin? Thank you for your help.

[lynnie_sydney]

I didnt use any NSAIDs as they never worked for me – not an uncommon occurrence with palindromic RA – and probably Lyme. I also didnt use any other drug. For pain relief, the only thing that ever worked for me was Panadeine Forte and I just used this when pain was at screaming point through the night. Not sure if that’s the same name in the states, it’s panadol with codeine – and the codeine component is greater than what you can buy OTC so needs an rx. You are the only one who will know whether NSAIDS work for you. And it is good to get inflammation down to a point where the abx can reach its/their target

That being said, my AP doc is NOT averse to using methotrexate when it’s in combination with abx – to calm down the immune response at the same time as hitting the bugs. However, that’s not a common view and my doc is the other side of the world to one you’ll likely see.

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]

Hi Mkay,

Yes, I really do understand your fears, as I was dx’d with very swift onset, severe RA…pretty much every joint affected at the outset. I have never used anything immune-suppressive and abx alone took me to 90-95% improved point, which is miraculous in an of itself, but I have also learned of many other things to support the therapy. In other words, my path has not been just about popping my abx.

I’m not sure which lady in the book you mean, but a clue as to her condition may lie in her treatment course and it would be interesting to know how she managed her treatment (did she ever try IV clindamycin, for instance?) and if she worked with an experienced AP doc or not. Some folks just take mino as a DMARD and self-manage and, in more complex cases (which is what this lady’s case sounds to be), there is much that can be done to tweak the protocol and support it (diet, detoxification, supps, BHRT, healing leaky gut, etc). Just taking mino may not be enough for some folks, in other words, and it may require a combination abx therapy depending on a person’s pathogen load and anything else that may be impeding progress. Further, rotating tetracyclines may be necessary in some cases – e.g. switching to doxy from mino for a period of time after about 5 years. Other factors may play into things, too, such as dud generics. Hard to know why this lady didn’t do well without chatting directly with her and learning a bit more about her path. Did she have undiagnosed Lyme, strep or chlamydia pneumoniae, candida, for instance, that may have required combination abx? Dr. Brown didn’t just use tetracyclines, but often used many different classes of abx, depending upon an individual’s situation. I know it’s easy to be scared by listening to other people’s stories, but sometimes we hear of folks who have struggled for years without really knowing how to support their therapy. Conventional drugs, too, come with their own set of long-term issues, sometimes compounding problems and, as the lady you mentioned has experienced, there are no guarantees of “no damage” on conventional drugs either. My MIL has used methotrexate for years and while it has provided some small amount of palliation with increasing doses, it has not stopped disease progression for her PsA and AS and she is constantly on abx, anyway, as she is unable to fight infections.

MKay, you sound quite mild in presentation at this point and, as you’re describing your symptoms, it doesn’t even sound like classical RA, which usually involves joints bilaterally. It is inflammation that causes damage in RA and, as your SED Rate is so low, it’s more likely you won’t suffer much damage, if any. It’s a good idea to get CRP tested, too, however, as this may be high when SED rate is low….CRP tends to be more a reflection of what is happening in real time, whereas SED rate, an older test, tends to be more slow to respond to inflammation or when a flare has passed. Do you also have positive markers for RA – RF and/or anti-CCP? If you are seronegative, it may well be that you don’t have RA, but more of a reactive arthritis presentation. In fact, a positive RF isn’t conclusive of an RA dx, if symptoms don’t correlate with RA either and is just a guide to dx if symptoms match labs. There are many doctors who actually believe that positive markers for rheumatic disease correlate with infections. For e.g.:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2748386/

It should be helpful to read the ILADs link above to get informed about the inadequacies of standard Lyme testing. A negative standard test (ELISA or western blot), in other words, doesn’t necessarily mean a person doesn’t have Lyme and that link will explain why a clinical work-up by an experienced LLMD is important in this context.

As Lynnie said, getting informed is all-important in making an educated, well-informed decision about how to proceed with treatment course. If infectious causes for rheumatic diseases make sense to you, then it follows that abx therapy is the way to go. If not, then it may make better sense to you to take the conventional route. It really must be a personal decision and we don’t try to convince anyone of how to treat their rheumatic disease here…just support those who do choose abx therapies. 😉 Some folks, like the lady in the Scammell book that you mentioned above, may also choose to do a combination of AP and conventional meds. There really isn’t any right or wrong with this, just personal choices based on (hopefully) a fully informed decision and self-advocacy. So please don’t feel that if you choose to take a DMARD or biologic drug with abx therapy that you aren’t welcome here, because many do choose a combined path. The goal, ultimately, is to come off the other drugs when the rheumatic disease has stabilized, but this, too, can take a lot of self-advocacy and work in terms of all the adjunctive supports mentioned above and carefully managed weaning.

Hang in there, MKay…although this forum is dedicated to supporting those who choose abx therapies, there are lots of choices here and no one is restricted to one doctor or one treatment path. However, the ultimate way to wellness is to get as informed as possible. Not only is this incredibly self-empowering in the decision-making process, but just knowing that there are lots of options out there and that we aren’t restricted to the recommendations of one doctor only, able to choose our path and have some say in our destiny, so to speak, helps to alleviate a good deal of the fear surrounding these dx’s. So, if you do choose abx therapy again and want support for it, we’re all here for you.

PS The one DMARD my LLMD was okay with me using when I was at my worst (and since for actual Lyme tx due to its anti-protozoal effects) was plaquenil. It has some nice anti-inflam props, but may take several months to take full effect. It also requires 6 monthly eye checks and may need to be started low and slow in case one herxes on it.

[mkay]

Thank you Maz! I have read your reply more than once, you’re always helpful! I should have a few more test results in tomorrow I will post if so. Does lyme arthritis destroy bone also? Just curious. Thanks again.

[Maz]

@mkay wrote:

Thank you Maz! I have read your reply more than once, you’re always helpful! I should have a few more test results in tomorrow I will post if so. Does lyme arthritis destroy bone also? Just curious. Thanks again.

Yes, unfortunately, Lyme can be destructive – any inflammatory arthritis holds potential for joint destruction, especially in those of certain genetic haplotypes (e.g. hla dr4)…and there are many causative pathogens that can initiate this, including, but not exclusive to, Lyme. E.g. various strains of mycoplasma (e.g. m. fermentens, m. pneumoniae, etc), chlamydia pneumoniae, proteus mirabilis, h. pylori, p. gingivalis, strep, etc, etc.

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