Feel like a failure

[zakdog]

So I am really not sure what direction to go…been on minocycline 10 monthsvwith improvement but decided I want more so we briefly introduced zithromax with no change so saw my rheumy who started either methotrexate or plaque nil so started plaque nil and after a week vision went blurry so we stopped it, next on our list was mtx which I agreed to try after seeing my ap doc and him saying he uses it. I have done two injections with no side effects except my joints are way more swollen. Not sure it is going to b an option and now I have to ask myself why bother with the ap doc since we r trying traditional meeds. I feel like a failure and am frantically doing anything. I will not stop the minocycline but not sure which direction to turn. I am scared that if this doesn’t work my joints will b shot but if I change the rest of me will b shot. I feel desperate and just need direction. Or maybe a med holiday. I know I am introducing way too many changes but I feel frustrated and my ap doc has been no help lately and I am not confident in his abilities anymore. I am in a desperate balance between traditional meeds or ap?? My ap doc says do both but am I missing something..

[maz.aust]

Don’t be so worried .. there are lots of people on things like plaq & mtx with AP !! From what I can glean after they have everything under control they slowly drop the traditionals.

I’m sure others will jump in here to give you their 5 cents worth.

PATIENCE is the name of the game ,, AP is not a quick fix & can take some time to kick in.

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Maz]

@zakdog wrote:

I feel like a failure and am frantically doing anything. I will not stop the minocycline but not sure which direction to turn. I am scared that if this doesn’t work my joints will b shot but if I change the rest of me will b shot. I feel desperate and just need direction.

Hi Zakdog,

Please don’t think you’re a failure! Sometimes the AP road is not a straight road and it’s just about figuring out what might need to be added or tweaked.

Can you let us know a bit more detail? I.e. Are you using a particular generic or brand? What do your labs look like at the moment? Have you seen any improvments since your baselines labs were drawn? Do you recall any triggering infections that might have set off your RA? Have you considered trying IV clindamycin? Are you working with an experienced AP doc (Dr. R?) or is your GP or rheumy trying to help you? What infection testing have you had run, if any? What exactly are your symptoms?

As Maz_Aust said, it’s not a failing if you need help with other meds in the early days of AP. It can be a very tough road for some folk in the beginning and the other drugs can be weaned later. It doesn’t sound like you’ve had much luck, however, with methotrexate or plaq, which makes me wonder if you might have some underlying infection that doesn’t like immune-suppression very much. ❓

If you can share a bit more with us, others may be able to chime in with some fellow-patient insights for you. 🙂

In the meantime, here are a couple links to look through to see if anything rings bells for you as to what might be a missing piece of your puzzle:

http://roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

[zakdog]

Thanks for the boost…I am incredibly impatient but want back what I had a year ago. I am seined a rheumatologist and also
dr. R . My last labs were much worse. In the pst year my Rf, ccp and all else have climbed. My rheumatologist says he is not concerned and does not rely on labs but rather bases things on how I feel. Dr R was not concerned either and just suggested iron for the anemia. I am on name brand minocin. I order it from Canada to avoid generics. I have a fair amount of ankle,foot,wrist,hand and elbow pain but very little swelling. A couple fingers were swollen prior to but after second dose my throat,jaw,wrists,ankles all swollen and painful. I took 2 mg prednisone for a couple days to help the mtx inflammation. I have had the jaw and throat swelling in the past but not since before minocycline so do not think it is allergic rx but still concerning. I let my rheumy know and he said do one more injection and if it occurs again then stop med as he has seen increase pain in the beginning but not the swelling. I would rather do plaque nil but the vision changes scared me and apparently it helps with symptoms but not joint destruction and when I saw dr.R he said he prefers mtx at a low dosage to help out and that some people do very well if they stay with ap and low dose mtx. But it feels so against everything I have been trying to achieve. He said it is fine since we have tried iv abx already, other abx orally and also done the diflucan. I asked about igenix testing and he said he doesn’t think it will matter since we r covering all our bases. I am still on the zithromax couple times a week but have to apparent benefit but it is early, I suppose. I am just frustrated and want this to resolve. I ask myself if maybe I just have a messed up immune system and no infection. Are there others who do not respond to ap therapy?

[Valsmum]

I just wanted you to know I hope you feel better. I’ll be saying my prayers with the kiddies in a few so I’ll add you to our intentions.
Hope you’re at peace with your decision, whatever it may be.

take care,
Sheri

[zakdog]

Sheri that is so sweet and thank you so much as I truly believe in the power of prayer and have to say mentally I already feel more at peace, thank you so much.

[PhilC]

Hi zakdog,

Have you considered low-dose naltrexone (LDN)? If not, then a cautious trial of LDN is another option you might want to think about.

You said you think that maybe you don’t have an infection. Have you ever had any problems with respiratory, urinary tract, GI tract, or other types of infections?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Valsmum]

http://articles.mercola.com/sites/articles/archive/2010/08/16/rheumatoid-arthritis-protocol.aspx

I thought of you today when I read this, because somewhere in the article it reads that it may take a long time.

I just thought it might help.

Merry Christmas.
take care, Sheri

[hbell]

Hi Zacdog,

Unfortunately AP did nothing for me for the first seven months and I was just getting worse and worse. I was in a bad place. My AP doc told me to see my rheumy and start MTX. I started on 17/Sep/2010 on 10mg/week and noticed a marked improvement after 4 weeks. Three weeks ago I was boosted up to 12.5mg a week. My CRP has gone from 106 to 26. I am still on AP therapy as well. My AP doc treats a lot of people on this site and is very knowledgeable and I believe has had success with a lot of patients, but everyone is not the same. It is just commonsense to introduce the traditional meds (the ones we don’t want to be on) to knock the activity of the disease and give the AP a chance to work, and the most important part of all of this is to stop the damage to the joints. It is not about failing, either by ourselves or our treating docs, as it is a bugger of an illness to treat. Don’t be afraid to start the MTX or anything else your AP doc recommends. I have been on MTX now for 3 months and I feel great even though I have a long way to go. There is still pain of course, but I’ll take it compared to where I was, so I am very very happy (I can even dance the jig!). The only problem with this all is that my rheumy doesn’t know I am still on antibiotics and I will keep it a secret for now. Hopefully the MTX and the antibiotics will do their work and knock the inflammation down and I will not need to add another DMARD to the equation (the less drugs the better). Good luck with whatever decision you make – just save the joints!

[zakdog]

Thank you everyone for all you posts….it makes me feel so much better to be reminded that I am not alone and also to hear your suggestions. I know that this has become an internal battle with myself. I became so so determined to stop this disease and do it with nothing more than antibiotics and occasional prednisone that I have mentally come to a point of accepting other meds means I have failed. I know it is silly and I should be pleased with the progress I have made and be thankful that I have traditional meds to help get me through this until the antibiotics can work more. Both my doctors AP and Rheumatologist are pleased with my progress and have encouraged me to try these meds in order to settle things down but to remain on the antibiotics and so I guess I just need to listen and I will also take all your suggestions and also consider them, especiallly the LDN. I have read lots about this and it sounds promising. I am concerned with the fact that the Mtx makes me swell so much and gives me a swollen sore throat, my doc is aware and if it continues i may have to stop it anyway but we will see, it just seems counterproductive. Anyway, thanks so much for all your advice and encouragement. I will continue with all my current treatments and f/u with my AP doc in a month and quit torturing myself for taking mtx. Not sure why it seems like such a deamon but it just does. My third injection is tomorrow…

[hbell]

Hi Zacdog,

Are you taking folic acid which is a must if taking MTX? It helps stop some reactions, eg mouth ulcers, nausea, etc? This may help with the swollen throat issue?

[zakdog]

Yes I take folic acid every day except the day of my injection, which was today. Did u have a sore throat from it? How long before you felt better? This was my third dose. I also take biotin every day to help with potential hair loss, prednisone makes my hair shed so I imagine this will too.

I have to say all of this does not seem like such a big deal today… A girl I work with shot herself on Christmas eve and I now think all my issues are so petty and I am so blessed to have options. Life is so short and I am now going for quality, and doing what it takes to enjoy life. Thanks for all your support and encouragement

[Jan Lucinda1]

Too bad your coworker didn’t get the help she needed. This can be a difficult time.

Jan

[hbell]

Zacdog,
This is terrible news about your colleague, very sad for her family and friends.
I am on oral MTX. My Doc had me start on low dose so my body would get used to it before uping the milligrams after two months. Touch wood, I have had no side effects except a bit of fatigue. I felt a marked improvement after 4 weeks. I too, look at quality of life over quantity – life is way too short. I’m 53 years old and I want to enjoy my retirement in two years time – I didn’t come all this way not to!!

[Maz]

@zakdog wrote:

In the pst year my Rf, ccp and all else have climbed. My rheumatologist says he is not concerned and does not rely on labs but rather bases things on how I feel.

Dr R was not concerned either and just suggested iron for the anemia. I am on name brand minocin. I order it from Canada to avoid generics.

I have a fair amount of ankle,foot,wrist,hand and elbow pain but very little swelling. A couple fingers were swollen prior to but after second dose my throat,jaw,wrists,ankles all swollen and painful.

I took 2 mg prednisone for a couple days to help the mtx inflammation. I have had the jaw and throat swelling in the past but not since before minocycline so do not think it is allergic rx but still concerning. I let my rheumy know and he said do one more injection and if it occurs again then stop med as he has seen increase pain in the beginning but not the swelling.

I would rather do plaque nil but the vision changes scared me and apparently it helps with symptoms but not joint destruction and when I saw dr.R he said he prefers mtx at a low dosage to help out and that some people do very well if they stay with ap and low dose mtx. But it feels so against everything I have been trying to achieve.

He said it is fine since we have tried iv abx already, other abx orally and also done the diflucan.

I asked about igenix testing and he said he doesn’t think it will matter since we r covering all our bases.

I am still on the zithromax couple times a week but have to apparent benefit but it is early, I suppose.

Are there others who do not respond to ap therapy?

HI Zakdog,

I’m a little unclear as to all the previous antibiotics you’ve tried this past year…doses, for how long, etc. Also, how many IV rounds have you undergone?

The reaction to the methotrexate doesn’t sound good to me. Of course, I’m only a fellow patient, but throat and jaw swelling signals something awry.

Just based on what you’ve mentioned above, there are a few things you might consider:

1. Hypersensitivity – sometimes this occurs when there is a lot of inflam and die-off. Basically, it’s herxing out of control that creates an inflammatory barrier and the abx can’t get through to do their stuff. Sounds like you’ve introduced a few different protocols this past year and this (only speculation) might have added to the situation. What Brown would do in these scenarios is to stop the abx for a week and recommence at the same (if low dose) or a low pulsed dose (if doing daily). This gives the body a chance to clear bound immune complexes and toxins from die-off. I have a transcript of one of Brown’s talks on this problem, if you’d like me to send you a copy.

2. Has Dr. R tried you on a pencillin? I got a great opportunity to speak with Millie Coker-Vann recently, who runs TARCI labs, the original labs Brown used (you can see Coker-Vann in the Brown documentary – link at top of forum). She told me there were instances when Brown would only use a penicillin with some patients. What I can share with you from personal experience is that it was an extended release amoxicillin (called Moxatag) that I took for 8months that brought down my anti-CCP dramatically. The side-bar to this is that I do have Lyme and I herxed madly for about 5 weeks after starting it, but the improvements just kept coming after that early worsening. Brown talks about strep being a possible co-offender in the book that can block progress on tetras. Something to consider, perhaps?

3. What are you doing to detox?

4. Have you tried an elimination diet?

5. Could candida be an issue?

The comment by your rheumy is fairly typical…i.e. that they don’t go by labs. This is because they only use labs like RF and anti-CCP as prognostic indicators (in the beginning to determine degree of severity). They don’t expect these markers to improve…but as I can attest, personally, these do improve with appropriate antibiotic therapy. My LLMD runs my labs monthly and this is how we determine how I’m doing on a particular abx protocol and, if I begin to plateau or worsen (after herxing is over), then we know it’s time to change things up.

I have heard feedback from others seeing Dr. R that he is quite a good AP doc and is aware of Lyme and coinfections. However, being ‘aware’ of Lyme doesn’t make a doc Lyme Literate, unfortunately. Our top AP docs are also aware of Lyme, but do not treat it (or its coinfections) adequately and I’d personally only trust an ILADs-trained physician to by Lyme Literate. To give you an idea of just how different Lyme treatments are from low dose AP, these links are worth reading, if you have a moment:

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

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

An example of why it’s important to determine if Lyme and coinfections is involved is the problem of “anemia.” There are different kinds of anemia and, in the case of babesiosis, a coinfection of Lyme, anemia can be a real problem and also prevent progress if babesiosis (a protozoan infection that infects red blood cells) is not treated adequately. You might be interested to look up the symptoms of babesiosis in the links above to see if anything resonates with you. Another example of why it might be important to figure out if Lyme is a problem is because those folk who really don’t do well on immune-suppressive meds may in fact be making the issue worse (allowing infections to proliferate).

Of course, a lot of this is a fine balancing act…because some people need to function to work, look after young ones, etc. So, working with a doc who can help with pain mgt while also treating the infections is pretty important.

One thing that has really helped me when I’ve had a lot of inflammation was to do a liver/gall bladder flush. Others I’ve spoken with have found colonics to do the trick or fasting. However, this isn’t something I’d suggest anyone do on their own for the first time without the supervision of a naturopathic doc or even an allopathic or integrative doc who knows what they’re doing and can help guide the process. None of us are medical professionals here, so we can only offer suggestions to follow up with treating docs. 😉

Btw, I also had vision probs with plaquenil, but mine started at around the 4.5 month mark…I was getting ocular migraines with blind spots and jagged, zig-zagging arc-like flashes of light in both eyes that lasted about 10 or 15 mins and disappeared as soon as I stopped the plaquenil.

Yes, some folk don’t respond to therapy…some stats were given by Dr. S in Iowa on his link on the main site:

http://roadback.org/index.cfm/fuseaction/education.display/display_id/123.html

However, this is bearing in mind that Dr. S. mainly used IV clindamycin and oral monotherapy. Finding the right protocol in each individual case can take some amount of patience and working with a doc who absolutely believes in infectious causes and is willing to try various classes of abx to see what will work. Having a lot of inflam isn’t good either, so working on ways to lower it (like doing a washout, if hypersensitivity has become a problem, detoxing, diet, systemic enzymes, sauna, etc) can really go a long way to helping.

I know how frustrating all this is, Zakdog…I was very severe in the beginning and have had hurdles to jump along the way, too. Above all, if you need conventional med help to get past this difficult period, then don’t feel like a failure. These diseases are hard going and it takes a lot self-advocacy when we’re pretty sick and tired to regain balance again.

Do hope you feel better soon and that something above may ring bells to help you get back on track….only fellow-patient suggestions of things to consider and research for yourself, of course.

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