Why some need DMARDs/Biologics along with AP

[Susan LymeRA]

I'm posting my own experience in hopes it will help others who don't respond well to AP alone.

Brief history, I was on AP for a year and experienced improvement but not remission.  I was not working with an AP doctor as none were close at hand. 

After 1 yr, I found a rheumatologist who is lyme literate and committed to infectious causes to auto-immune disorders.  She ran appropriate tests and found oh-so-many of the suspected bugs in me.  I consistently test positive for lyme, babesia, h. pylori, mycoplasma (off the chart on that one), Cpn, tapeworm, HHV-6.  I could be the poster child for infectious causes to RA.

We swapped the 100mg of mino MWF to doxy same dose because mino was causing some lupus like symptoms.

We added ammoxycillan, biaxin and prevacid to attack the H.P.  Clearing H. P. really helped me with joint pain and leaky gut issues.   She increased the biaxin dose to attack the babesia and added plaquenil.  I became 100% painfree and remained so during the course of this treatment (7 mths).  However, at that point, my joints began to have swelling again.  Multiple joints.  She found this on physical exam.  I was not yet experiencing enough pain to acknowledge a problem.  I am quite capable of functioning fully with some pain.  I would say every horserider I know has this capability.  You just can't work around large animals without incuring some injury and you learn to ignore it (we probably have higher than normal pain tolerance as well).

She was alarmed at the amount of swelling.  I will never forget that day.  I thought life was great until I saw her alarm.  She was alarmed and said I have “explosive” RA.  It was not fun to hear and as a result of her findings, she wanted to use methotrexate.  I balked. 

She put me on massive herbal anti-inflammatories to no avail.  She kept recommending DMARD or biologic, my choice.  I balked.  The swelling grew and I could no longer ignore the pain.  We ran a gene test to see if I detox well.  I don't.  We added IVs of glut which helped but still some swelling.

Finally, this past summer (8 mths I resisted DMARDS/Biologics) she threw up her hands and said “I can't get you well if you don't do something to stop this swelling.  Swelling equals joint damage.”  (I already lost all cartilage to my left wrist while on AP.  I knew this doctor wasn't kidding)  With great reluctance I tried Humira (OW!!!) then Enbrel.

Ho – Boy!  All pain melted away.  We were still attacking the bugs with AP but holding back the immune response with Enbrel and I felt great.

30 days later I got sick with tonsilitis.  Off Enbrel, pain returned.  Tonsilitis healed and back on Enbrel.  Pain gone. 30 days later, tonsilitis.  Dr said “get a tonsilectomy”.  I did this last Sept 08.  Back on Enbrel.  Oct 23, parvovirus.  Off Enbrel.  Parvo cleared up, back on Enbrel.  Dec 28, worst cold you ever ask for.  Ached from head to toe.  Off Enbrel.  Pain returns. 

I discuss trying Enbrel at half the minimum dose.  Dr agrees.  This does not eliminate pain and now I get the fun new symptoms of dizziness, listlessness, hopelessness, weak muscles.  These are babesia symptoms.

I have just begun Mepron for babesia but the symptoms began a few days prior to the Mepron.

Here is my doctor's response to my new symptoms.  Inflammation is occuring in my inner ear causing dizziness.  This is a babesia symptom.  This inflammation is also affecting my neurotransmitters causing my sense of hopelessness and listlessness.  Inflammation in the muscles causing weakness. 

We need the Enbrel to counter this inflammation, so back up to twice a week (which is minimum recommended dose and the dose that always seems to make me sick).  Claritin for the brain inflammation which should help dizziness.  I took a Claritin right after speaking with her and my dizziness is subsiding.

Mepron is going to tackle the babesia and she fully expects synovial inflammation (joint flares) from the Mepron which may override the Enbrel and require a second agent (possibly Arava)  AAAGGHHH!  Pray that is not the case.

So, this is my story and could be yours too.  I'm an ongoing case, but my doctor is very experienced and feels confident we will succeed.

She hopes the Mepron is going to keep me from getting sick when we increase the Enbrel.  Enbrel is very effective at stopping joint swelling and pain. 

I am thinking I am unusual in that I have so many of the bacterias/parasites, any one of which can cause A.I. 

AP is working very well against the mycoplasma.  My # were off the chart at >5 for a long time but for 8 mths or so (consistent with the beginning use of Enbrel) have been coming down.  Last test result I was down to 358.  Still high as <.90 is normal, but at least on the chart now. AP is not sufficient to battle babesia nor Cpn.  So far doctor has not discussed the Cpn and is focused on eradicating babesia.  Lyme will be in the future but babesia must come first. To prevent joint damage and keep swelling away so meds can do their job, we must use Enbrel.  We have not yet figured out how to hold back my immune system enough to stop joint damage and yet keep me from getting sick.  So, this is still being determined. To balance out my neuro-transmitters, we are adding the following two supplements.  1- Mood Food by Xynogen (that's the name.  I haven't looked into it yet so don't know a thing about it.  I'm working on this today)  2- GABA. I hope my experience is helpful to some of you who must do more than just AP. Susan PS:  I need to correct one thing.  While I am on Mepron (estimated 5 mths) I have to stop AP.  Mepron cannot be taken with any tetrecycline drug.

[Joe M]

[user=86]Susan Lyme/RA[/user] wrote:

After 1 yr, I found a rheumatologist who is lyme literate and committed to infectious causes to auto-immune disorders.  She ran appropriate tests and found oh-so-many of the suspected bugs in me.  I consistently test positive for lyme, babesia, h. pylori, mycoplasma (off the chart on that one), Cpn, tapeworm, HHV-6.  I could be the poster child for infectious causes to RA.

Susan,

Thanks for sharing your story.  I'm sure others will find it useful as they travel down this road.  But tapeworm?  Actually I got on today looking for the link Prix mentioned having nasty photos, but after checking out some photos of tapeworms I'm not sure anything could be much nastier.  Have you ever passed one?  How do you know you got rid of them?  How did you know you had one?  Did you lose weight without trying or anything like that?  Sorry about all the questions, but I find tapeworms fascinating.

And I hope you have a great weekend!

Joe

[Susan LymeRA]

Hee-Hee!  The things we do talk about here.

In June 07, a stool sample found the tapeworm.  I do not believe I have passed any although I have been on a parasite cleanse since last Oct.  I understand tapeworms are very hard to kill because they are sectional and just grow back.  On Jan 1 of this year and On Jan 10, I did pass some impressive worms (2 on each date)  They were approx 3″ long, about 1/8″ wide and intact.  Unfortunately, the lab was unable to identify them.

As far as I know, I still have tapeworm.  But I sure don't lose weight.  I gain weight if I look at a picture of ice cream. 

Susan

 

[Donna RA]

Susan,

Would you mind pm'ing me the name of your Doc?  I think I had called her once, but she was not accepting new patients at that time.  Is she in VA?

Thanks,

Donna RA

[Susan LymeRA]

Donna,

I am doing so now.

Susan

[linda]

Susan, how long were you sick before you started AP, and how severe were you?

[Susan LymeRA]

Linda,

I developed symptoms 8/05 and was diagnosed with lyme and treatment started.  I did get a second opinion as the first one was based on clinical diagnosis only.  The second doctor (LLMD) ran the bloodtest at Igenex and I came up CDC positive for lyme.  He did not test coinfections as he did not feel I had the symptoms, but he did note the nodules on my 3 fingers and suspected RA.  The bloodtest showed an elevated rheum. factor and off I went to a rheumatologist.

The rheum. saw me  Jan 06 and clinically diagnosed the RA.  I was so swollen in all joints by then I looked like the Michellin man.  In 5 months, I had gone from healthy to housebound.  Bloodwork comfirmed his diagnosis and I was high moderate, just 4 pts from severe.  He recommended MTX and gave me a pamphlet.  I went home, got on the internet and found this website.

Rheumy was angry but did prescribe mino 100mg MWF. 

I found an integrative doctor to help me identify and treat other possible causes such as heavy metal toxicity, leaky gut, etc.  I really credit that doctor with saving my life. 

At the end of 1 yr, the rheumy declared me nearly dormant.  My bloodwork was weak positive…just 4 pts above normal.  It was at this time I found my current rheumatologist who puts the whole puzzle together.

I was very disappointed to have to start biologics. 

The rest is history.

Susan

[tainabell]

Thanks for sharing your story, Susan.  I just got tested for co-infections, so I may be in the same boat as you soon!  I also don't fit the clinical pattern for any of the co-infections, so I will be interested in how the tests come back.

In my opinion, there's never an example of a case where one should say, “I will never do this or I will never do that”.  If you need it, you need it.  You have to make a prudent decision based on what you've tried/how much you're suffering/how long you've been suffering/ and how urgently you need treatment.  Seems like you made a good call!

Also, as a side note, how lucky for you to be CDC positive!  It seems silly to say, but isn't it funny how its sort of coveted to be CDC positive for a disease like Lyme.  It puts you in the realm of “confirmed” patients, not a murky outliers.  I just got another Lyem test, I'm hoping my WB will “light up” cause of the abx I've been on.  Then I will be among the CDC's “accepted” Lyme patients as well.  Cross your fingers for me.

[Tiff]

Susan,

Your detailed post is very helpful and informative.  I so envy your doctor's dedication to detail and completeness!  My doctor is going to give up on me pretty soon and send me back to a rheumy.  She isn't pushy about it because that is not her style, and because my results have been so mixed.  Clearly ABX have been very helpful, but is it enough?  It kind of doesn't look like it to me, so your post is very encouraging.

BTW, Joe, you might like these photos if you find parasitic worms interesting…  all they can say is we should wash our hands???  Ugh!  :sick:

http://www.foxnews.com/photoessay/0,4644,6672,00.html

 

[suera]

A note to tainabell, what you said is so true “I won't do this or that”. This disease beats us down and at some point we are at the mercy of it and need blessed relief, side effects be damn!

Good luck on your continued journey Susan, if there is any comfort at all in knowing you are not alone, you're not.

Sue

[Susan LymeRA]

Tainabell, It really is a sad day in the medical world when a “positive” bloodtest is to be envied.

I just hate that I had to succumb to the “standard” rheumatoid drugs.  Pain didn't drive me there.  I wasn't in much pain and that is one of the reasons why the doctor had a hard time getting me to take it.  Second reason is that I am really scared of those drugs.  So I eat lots of green veggies, take liver supplements and folate supplements and pray over each shot.  No kidding!  I don't want to fight this disease only to contract cancer.  Jeepers!

Aside from that, Enbrel really does take away the last vestige of swelling and I feel better than ever when on it.  That is, until I get sick. sigh….  My numbers get better too so I think removing the swelling really does help the “healing” medicines do their job.

If you can get the job done without it, that is best and I envy you.  But if you find you need the help, use it.  So long as the doctor is still going after the bugs. 

Tiff, I'm really sharing my story in hopes it will be of help to others who don't respond completely to just minocycline.  I'm not a finished story, so we will all have to wait and see how it turns out for me.  Are you with a good AP doctor?  Do you know which bugs you have?  Since antibiotics are so specific in regards to their target, I don't see how we can be treated successfully unless we know which bugs we have.  Otherwise, we're just winging it.  If your doctor gives up, I hope you won't. 

It would be great to know if those who respond well to minocycline do so because they only have mycoplasmas versus so many microbes like I have. 

Susan

[linda]

Hi Susan,

We're still in a better position than those who are on biologics but not on the AP. They will have to take biologics for the rest of their lives, while we at least will be able to wean off them when we get to remission. I'm sitting here trying to decide whether or not to do my Enbrel injections; I have 2 open sores on my hand that are taking forever to heal because of the prednisone. I don't want to skip a dose because it's not really working well yet and I want to keep the momentum going of it working better each week. I@#*@hate these decisions, sorry for the language.

I'll probably wait a few days and then take it. My rationale for using biologics is to get off the gosh darn prednisone, which is making me sicker than the arthritis. That's also why I want IV abx. It would be nice if my experience is like vinnys, but I've been sick much longer than him so I doubt that will happen. Those of us on a biologic did not make this choice lightly, but I know I would be wheelchair bound and in an assisted living facility if I had not restarted it a year ago, Anyway, I appreciate all of your posts on this subject.

linda

[richie]

Hi

A major problem in horses is tapeworms –which are transmitted by mites living in the soil –sounds plausible that they got passed along to you —

richie

[Susan LymeRA]

Ritchie,

You are 100% right on the money.  I have loved and lived with animals my entire life and it isn't a clean hobby.  I used to laugh about it, but I'm not laughing anymore.  I had a friend who was a wash-your-hands fanatic.  Well, when we are out trailriding all day and we stop for lunch, our hands are dirty from rubbing sweaty horses.  We carry wet wipes and waterless wash, but how much good does that really do?

As a child, I didn't even bother to wash my hands before eating my lunch and that was usually after cleaning stalls.  Ugh!!!

I am a lot more diligent today.  I am still an animal lover and won't give them up but I am weaning myself from kissing them so much.  That is a hard habit to break.  🙁 And I wash my hands a lot more than before.

Linda,

I never did the prednizone and I fought the biologics but what you say is exactly true.  Sometimes some of us have to use those drugs because the AP isn't enough to stop our inflammation and inflammation is what does the damage to our bodies.  When I researched methotrexate v Enbrel, I quickly chose the Enbrel.  Seems you can still incur joint damage with the MTX but not so with the Enbrel.  I never looked at steroids.

 Because I have had to cave in and use the biologics, I am posting my experience and my results.  So, others who have to do the same thing will learn from my experience. And I want everyone to know that AP not working well enough for you does not mean you don't have infectious causes and it does not mean AP doesn't work.  Antibiotics are designed for one or two bacterias.  That is why there are so many different antibiotics on the market.  So obviously one antibiotic is not going to resolve every inflammation-producing situation out there.

AND my doctor has said all along and still says the Enbrel is temporary.  She said exactly what you said, that regular rheumatologists would have you on it for life because they are doing nothing to remove the source of your inflammation.  Because we are attacking the bacteria that is causing the immune response, we have hope of an end to the tunnel. 

She doesn't use the DMARDS and biologics on her patients who do well without them.  You and I seem to be in a small class of those who need more.

I hope Enbrel kicks in for you real soon.  Keep in mind that food sensitivities developed in your gut because of these illnesses can cause your immune response to produce inflammation too, so eat an anti-inflammatory diet which is mostly veggies, fruit, non red meat, and no dairy.  Try a vegan, low fat diet for a couple of weeks and see if your inflammation gets better.  If it does, then you might want a bloodtest and stool test to identify which foods you are reacting to.  Sometimes it can be foods we think are healthy.  For me, lettuce and red peppers and egg whites and dairy and soy were causing problems.

H. Pylori in my gut was the main source of gut issues and clearing that bacteria (the easiest one to kill so far) really helped me with food issues. 

Susan

 

 

 

[suera]

So true Susan about not making the decision to use these scary drugs (DMARD/biologics) lightly. It was one of the hardest decisions of my life. I want to add though that I am in debilitating pain without, I cannot imagine how hard it would be to take that injection if you weren't in pain.
Sue

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