Lyme and RA

[frhorngal]

Hi Everyone,

   I've been lurking on this site, reading everyone's wonderful advice and support and haven't yet posted. I was diagnosed with RA 2 years ago, read Dr. Scammell's book, tried diet modification first with little success (I was already a vegan). I then worked with a naturopath on gut healing and also did 6 weeks of high dose doxy (200mg a day) in response to an equivocal Lyme test (I couldn't afford to pay for a more sensitive test out of pocket)…I had 3 positive bands on a Western blot so she felt it was definitely a possibility. I was feeling much better after 6 weeks, but wasn't completely healed. Rather than push for another course of antibiotics, I went off all meds only to have my RA come back with a vengence. 

6 months ago,  I found this site. I finally convinced my rheumy to start me on minocycline (though she was reluctant, she agreed) I started at 100mg MWF…I finally  had my appointment with my AP doctor last week who ran a bunch of tests. Apparently, she feels that I DO have Lyme disease based on their tests and clinical expereince so now I'm going to be on high dose doxy again for 2 months with 2 courses of Flagyl in between. Has anyone had any experience with this? I know there are several members on here with both RA and Lyme…Would it be better for me to stay on the mino on the pulsed dose? There are so many conflicting messages and thoughts out there it's hard to separate fact from fiction.

Thanks for all of your support and encouragement

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[Maz]

[user=414]frhorngal[/user] wrote:

I finally  had my appointment with my AP doctor last week who ran a bunch of tests. Apparently, she feels that I DO have Lyme disease based on their tests and clinical expereince so now I'm going to be on high dose doxy again for 2 months with 2 courses of Flagyl in between. Has anyone had any experience with this? I know there are several members on here with both RA and Lyme…Would it be better for me to stay on the mino on the pulsed dose? There are so many conflicting messages and thoughts out there it's hard to separate fact from fiction.

Hi frhorngal,

Thanks for joining us here and nice to meet you! There are a number of us here with RA that was triggered by Lyme Disease and we're all following very different approaches. Much of this is due to the fact that every physician operates differently, but it's also partly due to clincial presentation of symptoms and suspected “Lyme-associated diseases,” commonly referred to as coinfections, that may be manifesting themselves…like babesia, bartonella, erhlichia, etc. In essence, each of us carries a multitude of pathogens, all collected throughout our lifetimes, and Lyme just happened to be the triggering element that tipped the balance.

Like you, I also had equivocal test results on standard ELISA, but my IGeneX lab results were unquestionably positive for Lyme. As Lyme must be a clinical diagnosis and shouldn't be one based on test results alone (notoriously inaccurate), your AP doc is doing you a great service IMHO. It may be that she feels it important to treat babesia or the cystic form of Lyme, hence the Flagyl in addition to the doxy. Combo approaches are generally the accepted norm of Lyme Literate physicians, as well.

Also like you, I was in quandary as to whether it would be best to begin on straight AP (low dose mino) or to hit the Lyme and possible coinfections hard first. I am seeing a Lyme Literate physician and so his preference was the latter approach, which I followed for a year. By the end of the year, however, I was becoming hypersensitive and the herxing was becoming intolerable. It was at that point that I asked to try low dose minocycline and azithromycin and I've continued to improve consistantly since.

Here's my personal progress thread, which lists all the combos I have been on for Lyme.

http://www.rbfbb.org/view_topic.php?id=301&forum_id=3

The other RA/Lymies have taken different roads…Susan Lyme/RA and Patti according to the advice of their personal physicians. In truth, there is no one correct path and it's all a “feel as you go” kind of thing.

My Lyme doc's area of expertise is microbiology and specifically in Lyme/associated diseases and their connection with “autoimmune diseases.” A past president of ILADs and now on the physician advisory board of the Turn The Corner Foundation, he's a very highly regarded researcher in this field and worked alongside the esteemed likes of researcher, Lida Mattman. It has given me great faith in his recommendations, as he's treated numerous RA, Lupus, MS, CFIDs, FM, etc. patients and brought the good majority to credible remission. His feeling is that once the Lyme is sufficiently suppressed that my immune system will recover enough to enable the RA to remit. That said, he is one of a number of highly regarded Lyme Literate physicians and each one has their own belief system on how best to treat. As my doc freely admits, it's all a medically intuitive game in a sense…no one patient will have the same pathogen load, nor respond in the same way to medications…for this reason, the protocols are changed up on a regular basis to keep the bugs on the run and according to patient response/tolerance.

A really great book that has just been published and worth the buy is, “Cure Unknown – Behind the Lyme Epidemic,” by Pamela Weintraub, senior editor or Discover Magazine. Living in Westchester country, NY, her whole family became infected with Lyme….but only one of four family members initially tested positive by CDC criteria! She documents her family's return to health, the journey they took and battles they fought, as well as interviews of other chronically ill patients, physicians on both sides of the Lyme Wars and also the most current research available to date.

You're absolutely right, frhorngal….there is a ton of conflicting info out there, making it hard to distinguish fact from fiction. This is why choosing a treatment protocol(s) has to be one that is made after careful consideration, what is within our comfort zone and individual means to afford, all in concert with our physician of choice. All this means that there is no 'right' protocol. However, finding a physician – whether AP and/or Lyme Literate who is open and willing to pull out the necessary artillery to help us get well is a real gift!

My best recommendation as a fellow patient is to get as educated as possible about what you're dealing with and to work with one physician that you trust will work with you and will address your concerns. Probably the road that is frought with the most pitfalls is to jump around between physicians and mixing treatments philosophies and protocols.

Wishing you well and so glad you joined us here. You'll find tons of support, encouragement and great information shared as you progress on your road back!

Peace, Maz

[Rosemary Perth Aust.]

I had Lyme for years, misdiagnosed, so it, and all the other pathogens really got out of hand until I found Henry's book and took matters into my own hands.

Doxy is one they often use for Lyme. I did have it for 5 yrs until MP came along and then changed to Mino which helped my heart a lot more but I was on two others as well with the Doxy.  I don't think it kills them though.  The other thing is the new rife machine has a Lyme frequency which helps a great deal.  I have not stopped my abx though.   I will also be interested in the tygecycline when it finally eventuates to cover it all. I am certainly not afraid of the use of abx.  Would not be alive today if I had not taken a stand.  Do whatever you think is best.  Going to a Dr. familiar with the disease makes things a lot easier. 

[frhorngal]

Wow! Maz, you've truly been through an incredible time trying to heal. I admire your courage and spirit! I didn't realize there were so many different options out there to help beat this disease. I'm only on day 3 of my doxy and if I can get to where I tolerate the extreme nausea, I hope it will work! (Ironically, I never had GI issues with the mino). My doctor and naturopath appear to be very Lyme literate so I hope they will have some insight. I just ordered the book you suggested and will check out the Turn the Corner foundation. Thank you so much!

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[Maz]

[user=414]frhorngal[/user] wrote:

I didn't realize there were so many different options out there to help beat this disease.

 

Oh yes! So many treatment options and why the complication of borreliosis and its many hitchhiker friends can make this a complicated picture.

Thought you might find this link interesting. It's a radio interview with Staci Grodin of the Turn The Corner Foundation, explaining why treatments should be tailored to individuals…and a few other useful tidbits:

http://www.turnthecorner.org/lymenews.htm

The following websites also offer a wealth of info:

http://www.ilads.org/

http://www.lymediseaseassociation.org/

http://www.canlyme.com/

http://www.lymeinfo.net/

There are more, but these should give you plenty of reading material!  😉

Peace, Maz

[Patti D]

Hi Frhorngal & Maz,

So glad you found this board to help with your lyme/RA.  I have been away from this board for a few days but was just thinking how last year at this time I was sicker than you can imagine with the lyme and not yet diagnosed RA.

I started with the doxy and had immediate results that were so positive. I was on the usual course for 1 month and was ok . I was not normal and went to several different doctors to try to figure out what was wrong as I had joint/muscle pain but no visible swelling. 4 different doctors told me it was the lyme working it's way out of my system:X What they should have done is given me more antibiotics but instead they let it go and yes, 3 months later I had full blown RA. After following this board and reading the Arthritis Breakthrough I thought if I could get a rheumy to order mino it would be the next best thing to the doxy which no one would give me as my 1 month was completed:angry: So, I found a doc and the rest is history. I am doing so well on the mino and have been on 100 mg 2x a day since December 2007 so about 6 months. I knew the mino would work as it is in the family of tetracyclines so it should take care of the lyme as well. I cannot begin to tell you how grateful I am for this abx. I feel so much better and am doing just about everything I could before. This week I have kayaked, swam, gardened for 2 days in a row both 6 hours in the heat. I biked as well .

 Last year at this time I was very down in the dumps, hurt all over, was really sick to my stomach from the doxy(not the mino though) and thought nothing would ever be the same. I told everyone, I went to bed as a 50 year old and woke up a 90 year old .

If I hit a roadblock with the mino I will go to a lyme literate doctor. That is out of pocket expense for me but so far I am making progress all of the time . I do see the huge value of a LLMD so if you have that ability like Maz said, go for it. Don't waste any time as your healing could start immediately.

Please keep us posted as to your progress. I am sending well wishes your way for a very speedy recovery:)

Maz,

How are you?? I am doing so good lately I am afraid to say as you know know it could jinx the whole deal:shock: My rt. ankle is creaking like crazy just like someone else posted (creaking bones)and finally the swelling is down:blush: Saturday, I was at a wedding with a 10 piece band that played great dance music and yes old wobbly ankles with slightly wedged high heals danced just about all night long:roll-laugh:The next day the swelling was back but it was gone in one day. Yeah!!! How's lefty doing for you?

Happy days!

Patti

 

[Trudi]

Hi Patti–

Haven't posted for quite awhile; lots of pain and discomfort from the Lyme treatment–really stirred things up; I'm back to the pulsing dose and have reduced the abx as of yesterday to see if it will help.

My Lyme rash has not gone away so my naturapath wants me to see the LLMD in Fond du Lac.  His appointments are 3 months out–will see him first in October.  I think I will have the Western Blot test which includes the co-infections prior to seeing him.  The out-of-pocket cost is $630 🙁

Glad to read you are doing so well.  I hope next year this time I will also post such great improvement; actually, I hope it will be sooner!!

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=287]Patti D[/user] wrote:

How are you?? I am doing so good lately I am afraid to say as you know know it could jinx the whole deal:shock: My rt. ankle is creaking like crazy just like someone else posted (creaking bones)and finally the swelling is down:blush: Saturday, I was at a wedding with a 10 piece band that played great dance music and yes old wobbly ankles with slightly wedged high heals danced just about all night long:roll-laugh:The next day the swelling was back but it was gone in one day. Yeah!!! How's lefty doing for you?

Patti, I'm just so grateful to Trudi that she posted today, as I had read your post on Wed and meant to reply, but then couldn't remember where you had posted when I went to look yesterday! Ach!

Like you, I'm going through a really good patch of improvement! The swelling in my knees and ankles is finally starting to come down…still there, but so good to see some movement at long last! I'm waking in the morning with just a few minutes of phantom-like pains, but then it soon disappears. I don't know if my knees and ankles will ever look the same again…right now they look like deflating balloons, but I'll take that over pain any day!

Thank you so much for checking in and for asking! I'm just so happy to hear you're out there and enjoying your gardening…and dancing in high heels, too!!!!!! Whoo hooo!!!! I really look forward to the day I can put on my dancing shoes again!

Trudi, thanks for checking in and just so sorry you're struggling. Patti and I know how you feel and we've been there, too…many times. It's all an up and down road. Hopefully, the pulsing will bring down your herxing levels and make you more comfortable. I hope so.

Must be so hard to wait for that Lyme doc appt. My guy also has a back-up of about the same period of time – it can be as bad as 5 months during the height of tick season! I managed to sneak in really quickly, though, by asking to be put on their cancelation list. Any chance you could ask about that?

Peace, Maz

 

[Trudi]

Hi Maz–

Thanks for the sympathy.  I am so glad to read you are feeling better.  My knees are swollen too and I sure do hope they will go down in size–otherwise I may not be wearing shorts again!:)

The LLMD does have a cancellation policy; I've already been moved up two weeks!

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

YAY!!!!!!!!!!!!  :roll-laugh:  Way to go, Trudi!!!!  Please come back and tell us how the appt goes. Oh…and yeah…those out of pocket tests really suck.

I have resigned myself to wearing capris shorts that go below the knee and mid-calf dresses just to cover the unsightliness of my sagging thighs and knobbly knees. :doh:  Never mind, the way I am now is like Patti said….far from the way I felt this time last year!!!!!!

Peace, Maz

[Patti D]

Hi Ladies,

Ditto Maz on the capris. These prednisone induced thighs have got to be covered but at least they can carry me around;)I am so glad you too are feeling well. I am about halfway through Pam Weintraups book and have to keep putting it down as it gets me so fired up.:shock: How can so many people who are so sick be treated like this. This kind of reminds me historically of the treatment of TB. If you read anything about it they didn't give  many drugs and used to put people outside(hospital porches) to get better. They let people go for months without any treatment so to say and thought it best for the TB to run its course. Kind of like the 4 doctors told me that my symptoms would remain for a while after the treatment had stopped.:X Yesterday, I was pretty wore out from all of the gardening but today I am still pretty good. I have got to start living more in the  “present” and quit trying to plan again. That is what really gets to me is the inability to plan out things like I used too. I guess this is the way it has to be. Well, things as we know can always be worse so being grateful for today is ok by me:D

Trudi,

I have the same doctors name in Fond du Lac and if my rheumy decides to stop the mino in October(of course I will do everything to not let that happen) that is who I will seek for treatment. Will you let me know how it goes. I am curious, did you get the lyme around here like I did. Did you have the rash, did your bloodwork come up positive or negative and how long have you had the lyme? Seeing how we are so close and practically neighbors, I know you have a huge deer population like we do. As we speak I have a momma & two new babies out my back yard eating my apples off of the tree. I pretty much gave the deer the apple tree as I try not to go back too much where they hang out.

 I really hope you feel better. Try those epsom salt baths. They really helped as well as a heating pad. Keep the joints moving every hour just by simple rotation. I really feel for you and boy the memory is still quite fresh on how horrible you can feel.I think if you have been healthy your whole life and wind up with lyme/ra or any of the other diseases mentioned on this board, you will have anew amount of empathy for people in pain. My family keeps telling me to get out there and get back in shape because I keep complaining about my wt gain , and how short of time it takes to exhaust me .  There is a fear of moving to soon as it may cause a flare/herx and a fear of not moving soon enough as you don't know how long the good feelings will last and you better do things while you can. It is the damn uncertainty of this whole diagnosis. I wish I had a magic wand that I could wave and everyone would feel great again! i am wishing you well Trudi!!!

Happy days!

Patti

[Trudi]

Hi Patti–

Thanks for your upbeat message–it is very encouraging!

To answer your questions, I don't know where I got the Lyme–could be at home we've got LOTS of deer around here–or at our cottage up north. 

I had a woodtick bite back in 2003 that sent out a red leader.  Went to the emergency room to make sure the head was out (I freak when I pull out a tick–this one I promptly flushed before checking if I got the whole thing); I was put on antibiotics–don't know what and for how long; however,  I wonder if I didn't get a co-infection from this bite because of the leader.

Anyway, I'd been having progressively worsening joint pain for about the last three years and came across the AP treatment.  I started AP for RA (did have elevated levels for RA) in April.  Within a week I had a bulls-eye rash on my calve; I ignored it–after all I was on antibiotics (bad choice)!!  About six weeks later, I developed a rash on my upper body and petechia on my legs.  My brother (pediatric nurse practitioner) was in town for our nephew's wedding and diagnosed Lyme; so did my own doctor later that day.  The doctor said the antibiotics brought the Lyme to the surface–meaning I had it for awhile.  I went on doxy for 4 weeks.  Herxing was pretty bad during this time.  Because I still had the bulls-eye rash a few weeks later, the doctor did a Lyme test (I think the ELISA) and it came back negative.  At this point she suggested I see an LLMD; I have an appointment on October 1.  Right at the moment I'm debating whether I should have the Western blot test now or wait until I see the LLMD.

After reading Pam Weintraub's book (mind-boggling the state of our health care), I actually think I have had Lyme since the early 90's.  Back then I didn't have the joint pain, but had terrible fatigue, headaches, dizziness, brain fog, lost a lot of weight, etc, etc.  I finally got better after about 18 months of seeing doctors and even being at Mayo, when the last doctor I saw found I had two bacteria–Klebsiella Pneumoniae and Citrobacter freundii and put me on Cipro.  Not sure if there is a connection with Lyme, but it sure seems that way.  I just hope that the LLMD will have some answers for me!!!  Patti, I sure wish you could wave that magic wand too 🙂

Sorry, this has gotten a bit long–

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Patti D]

Hi Trudi,

If I ever get around to it I will post my history on the personal thread area. If your Elisa was negative, like mine was don't waste your money on the Western Blot. It should be done according to the CDC only if the Elisa is positive. I had two doctors do the Western Blot because my ELIsA was negative, even when I told them they shouldn't have done it cause my ELISA was neg. $400.00 later I was looking at another “negative” result but was sicker than can be with a fever, joint pain, shooting pains in the side of my face, memory loss, swollen knees, cracking neck and unbelievable pins& needles feelings all over. Did I mention I garden a ton and have lots of exposure to ticks, also ignored on my medical history. Did I tell you I am a nurse that runs her own business teaching first responder training and wellness programs, one of which is lyme disease:angry::angry::angry: No one would listen to me. The latest statistics I have heard is doctors have a 50% rate of failure/success on their diagnosis. Isn't that an F??

Since I PM ed you I have not gone to your doctor yet ,the natropath Dr. Muth. I was going to wait until Oct Rheumy appointment and then decide if it should be try a new doctor, stay with my doctor or go to Fond du Lac. I am in the same boat as you as far as treatment needs. I am getting better and  thanks to this board get it now. This is a very slow process with lots of ups and downs. Things change daily but we have got to believe things are improving. Try to focus on what has improved since your beginning of the apx. make a list if you have to of what you can do now vs. before treatment. This is the only way I can cope with this whole thing. I spent the greater part of last year fighting with doctors over what was wrong with me. Maz finally cleared it up for me and told me what I probably new all along, I have lyme which probably activated the RA. I really think the LLMD will be able to put you on the road to recovery and will set up a clear treatment plan. Please keep us posted. Hopefully, you will have a better weekend:) I am sending well wishes your way:)

Happy days!

Patti

[Maz]

[user=287]Patti D[/user] wrote:

Yesterday, I was pretty wore out from all of the gardening but today I am still pretty good. I have got to start living more in the  “present” and quit trying to plan again. That is what really gets to me is the inability to plan out things like I used too. I guess this is the way it has to be. Well, things as we know can always be worse so being grateful for today is ok by me:D

 

Hey Patti,

You know something? You're right on about the planning thing…one thing this disease has brought into my awareness is how much I used to plan ahead and how this is no longer possible. I really do have to live from day to day. Even planning ahead for a vacation away is an uncertainty….but it sure has had a way of bringing me into the present moment and to enjoy those “well” times more fully and with greater appeciation, without always thinking about the next thing on the agenda. There aren't any redeeming features of these diseases, but perhaps, all in all, this has been one gift I might not have otherwise appreciated. 

Have a great weekend and enjoy your garden! 😀

Peace, Maz

 

[Trudi]

Hi Patti–

Thanks for all the good advice.  I will keep you posted.

One day at a time–  🙂

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Author]

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