I was diagnosed in 2011 with RA and I'm curious to see how proper treatment of Lyme and Co will affect my RA.
I am scheduled to see a LLMD on Sept 20th and I'm wondering if there is any possibility that I do not have RA.
Could it have been Lyme and Co all along? Time will tell. I tested positive for RA based on my RF (rheumatoid factor) I just wonder if it's possible for a person to become negative after Lyme treatment?
Posted by Lymetoo (Member # 743) on :
BIG possibility that you have had Lyme all along.
Big.
Posted by Keebler (Member # 12673) on :
- Ditto. Many with "auto-immune" markers for arthritis often see their markers change after a proper diagnostic work up / treatment / support.
And, if there is a separate rheumatoid diagnosis, then, if lyme , TBD (tick borne disease) or other chronic stealth infection such as Mycoplasma or Cpn (Chlamydia Pneumonia) are along for the ride, that other matter often gets much better. More often, lyme / TBD / stealth infection is the cause.
A good LLMD can help sort this out for your exact case.
Glad to see you have a LLMD appointment soon. In the meantime, best to avoid any vaccinations until you discuss it with your LLMD if you are so inclined. Vaccines often pose various issues for those lyme and most are best avoided.
Also be sure to avoid steroids (as many rheumatologists tend to pass them out like candy for "auto-immune" conditions). NSAIDS have their own risks but I'll not get into that as I don't have a handy links set for you on that.
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
and MOLD. Mold issues can be separate - yet many with lyme / TBD have a harder time with it. I would like to assume that your current rheumatologist would have already asked you about any mold issue that might be in your home, car, work.
There are some "links set" for that, too, but I'll not toss that out unless you ask for it. Just didn't want to forget that very important variable. And I hope it's not an issue for you. -
[ 09-03-2016, 05:04 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- And, a GLUTEN FREE diet might be something that could help minimize some symptoms. If you start that now, by the time you see your LLMD, you might have something to report on that. Many with lyme have problems with gluten - for various reasons.
Excitotoxins - also good to learn about and try to address prior to seeing your LLMD. Avoiding artificial sweeteners, too, is important for reasons discussed here. STEVIA - from a proper source - is fine and can add some enjoyment for you in Green Tea, etc.
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posted by Keebler (Member # 12673) on :
- Two other top categories - and the basics of support methods for most in any lyme / TBD protocol - that you might want to learn about while you wait to see your LLMD in a few weeks.
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posted by bluelyme (Member # 47170) on :
My buddy with ra responded to minocycline and bee venom...its like fibro or ms ..its mycoplasm or lyme or some other bugs.
they were going to give me vasculitis and roids but rhuemy knew better ...i owe him ..he even gave me doxy ...you can see the ketes under a microscope. ..
dig your name welcome to lnet..are you on abx ? Rochepin stopped joint pain for a bit ..i wanna try clindymycin
Posted by TF (Member # 14183) on :
I suggest you check out this site which explains that RA is an infection and how it is treated and cured with antibiotics (very low dose). Many have been cured of RA by going to a doctor who believes in the infectious theory of RA.
I was diagnosed with RA a few times. My LLMD thinks it's more Lyme arthritis like and I don't have RA. I agree with him at this point bc a lot of the RA symptoms are better with treatment. My RA markets were high, too.
Many of us are misdiagnosed with RA, but Lyme can spur orher autoimmune diseases. It's possible to have both. Are you currently being treated for Lyme and cos?
Posted by MyOwnAdvocate (Member # 48521) on :
I am taking Doxycycline and I am on my 5th week. I begged my rheumy to let me take them til I get in to an LLMD.
Things that have improved a bit in five weeks are migraines, terrible brain fog, blurred vision, neck pain.
There was four or five days where I ran out of antibiotics because my rheumy said "if you have Lyme, you will be cured in two weeks on antibiotics" lol, lol, lol!!!
Guess what all the symptoms returned at day 3 and I pretty much begged for more doxy until I could see an LLMD
. I was tested for Lyme Disease with the standard test and it was negative however I was only tested for the Lyme strain that is common on the east coast.
And my rheumy has never checked or mentioned anything about old or any other infection despite me telling her I feel like I have some type of unresolved chronic infection.
I have removed a lot of attached ticks from myself over he years and never thought anything about it because I'm an outdoors lover and I grew up in the woods wether it be hiking, mushroom hunting etc.
If I don't have Lyme and co then I know I have something that responds to antibiotics.
Posted by Keebler (Member # 12673) on :
Diagnosing Lyme Disease (&/or whatever else is going on)
SEE the WESTERN BLOT EXPLANATION links here regarding lyme.
Other tick-borne infections and other chronic stealth infections discussed, too [such as: mycoplasma pneumonia, chlamydia pneumonia, EBV, HHV-6 and other herpes viruses and enterovirus, etc.] -
Posted by Keebler (Member # 12673) on :
- You might call the LLMD's office where you are to go in a couple weeks and ask if they might advise you on anything between now and then.
This is vital if they are to do any testing on the day you go. Also know that testing is always to be done early in the week, never Th. or Fri.
And, sit down, take a breath and know this is just bump in the road . . . as doxycycline, alone, creates the environment and circumstances for chronic lyme to take deeper hold by forcing the spirochetes to spring deeper into the body and/or go into their protective cystic form where antibiotics cannot penetrate.
It takes a different kind of Rx - not an antibiotic (abx) to address that form, generally Flagyl or a relative Rx.
Monotherapy (any singular abx) is never a good idea with lyme. One may often feel better (after an initial herx, sometimes) because lyme is being suppressed, not fully addressed.
Oh, some spirochetes are being "killed off" but more dive deeper and go into cyst form and then can "multiply" when the cyst form feels "safe" enough to burst open when.
Other TBD (tick borne disease) can also require different classifications of Rx. Abx are not the only ones required.
Now, if that has deflated you at all, I'm sorry. Yet, know that there are various paths out of the dark woods. Take good care of yourself and stay away from doctors that are not educated in the matters that affect you.
Hugs . . . if you are a hugging type. Otherwise, a tip of the hat to you! -
Posted by bluelyme (Member # 47170) on :
Welcome advocate ..sounds like borreliosis...look into all modalities ..find out your coinfections and stay hopeful..watch under our skin , justinandcristie,under the 8 ball ...read all of lymenet and mitchells rant on mdjunction
Posted by me (Member # 45475) on :
Based on my experience and your description, going to a LLMD sounds like something that would definitely be worth it. Make sure you go to one that is reputable if you decide to go this route.
You can create a post requesting recommendations for LLMDs.
Posted by LilaLee* (Member # 43649) on :
I have RA (+RF and +Anti-CCP) and was diagnosed with it before a Igenex/CDC+ Lyme test. My joints (and RF) improved dramatically with big Lyme treatment of IV Rocephin combo but the current thinking is that i have been 'left with' RA. With this, the assumption is over stimulated/confused immune system that can't 'settle down.'
For me, much of my recovery has been based in rebuilding my immune system since i was put on many different Biologics before finally being diagnosed with Lyme and Co. Additionally i have Bartonella that for me has been the real culprit in terms of Neuropathy and Arthritis (the same symptoms that 5 different Rheumies assumed was RA).
Of note is first, my LLMD has felt all along that the Anti-CCP antibody can likely be created by the Lyme. This is a very progressive position and in direct conflict with traditional Rheumatology as +Anti-CCP being highly specific to fast and aggressive RA.
And, worth mentioning that the Anti-CCP test and part of the RA work up/definer is relatively new (less than 10 years). So, it remains to be seen what is learned about this test in the future (for instance, its role in Lyme Arthritis etc).
Last on the Anti-CCP, one thing that does appear clear is that once you have a +Anti-CCP test it doesn't ever go down, it remains positive and the number is not necessarily reflective of active RA or the level of activity itself. For instance, mine measures as high as the Lab measures and has for a couple of years despite great arthritic improvement and lowering of my RF.
Sorry if this feels like on and on for those who this doesn't apply to but the detail of the RF and the +Ant-CCP is complicated and very significant for those dealing with RA and Lyme.
Unfortunately, the conflict between Rheumies and LLMD is very challenging in terms of navigating care and treatment decisions and its been my experience that at some point you have to pick a path (for me it was the LLMD),do it with confidence and continue to gather info and make choices that are best for you.
Final note: there is an opinion among Rheumies that people with RA can have a cross reactive band on the Western Blot; this is band 39. I had several Labcorp Western Blots done at my insistence by Rheumatologists (before i realized the limits of Labcorp) that came back consistently with +39 and reported as a negative test. They would likely STILL insist this is negative despite general knowledge now about the role of band 39 in Lyme. I hope someone (even 1 person) can learn from my mistake; i ended up on 18 months and 5 different Biologics as a result with no improvement (because it was the wrong diagnosis).... Posted by MyOwnAdvocate (Member # 48521) on :
Lilalee I have been on so many Biologics with absolutely no improvement.
I have progressively gotten worse and that is what led me down this path.
I am both excited and confident to see an LLMD and I feel I will be in very good hands
Thank you all for the helpful information and kind words.
I am so glad to have found this site and I predict that as I receive proper treatment soon I will have lots of questions lol
Posted by MyOwnAdvocate (Member # 48521) on :
LilaLee I have been in treatment for RA since 2011 and had symptoms for several years before that.
I remember when I was finally diagnosed with RA I thought I had finally had my answer to why I had felt so bad.
Now it's been years without improvement and a decline in my health with a rapid decline in the last 3 moths with very severe and scary symptoms that made me dig, and dig, and dig some more to find out what's going
I want my life back and I will not stop until I get it!!!!
Posted by LilaLee* (Member # 43649) on :
My story is very similar. Good on you for taking charge of it yourself and insisting you get better advice and care.
I would be lying if i said my RA is GONE (it isn't), but i'm so much better and a lot of the other symptoms i had (brain fog, rashes, etc) are pretty much fully resolved.
I am doing a very alternative treatment (LDI) in the hopes of getting over my inflammation issues (which what RA really is, right?). The success of the treatment is all based in finding the right dose; when that happens I will happily share my success with you:)
PS: Look into LDN (not to be confused with LDI) and ideally be up to speed on it when you see your LLMD. Hopefully he/she will put you on it for immune modulation; its a very natural fit for people with Autoimmune issues and I'm convinced it has been instrumental in my Lyme recovery as well as keeping the RA from progressing. It's effective, inexpensive and very low side effect profile.
Good luck:)
Posted by LilaLee* (Member # 43649) on :
one more thing MyOwnAdvocate: You've probably figured this out but the use of big immune suppressant drugs are like gas on the fire of a bacterial infection, but will also make you unlikely to test positive on the Western Blot since its an antibody test, and a suppressed immune system doesn't make antibodies as it should.
Posted by MyOwnAdvocate (Member # 48521) on :
I stopped taking my Biologics about a month ago after researching that it could make things worse in Lyme and testing. Thank you so much for your replies. I will look into LDN as well
![[Frown]](frown.gif)