Lyme and Neck pain????

[Jeni]

Hi everyone,

I haven't been on in forever and finally decided that I should check in again. I had been feeling great for 3 months with 3x a week mino (100mg once M,W, F) but suddenly I started getting really sore again. It has been about 6 months since I initially started the mino and I thought that if I was going to have some kind of bad reaction that it should have already happened? I have been only taking my Enbrel 1 time every two weeks instead of the usual 2x per week. I had to take some Enbrel a whole week early because I was really nervous that I was going to have a severe flare-up.

Anyway, I came back to ask people with RA if they are taking 100mg mino 3x a week or are people finding more luck with 200mg 3x a week? While I was searching for this, I saw that someone posted that neck pain is really common with Lyme disease? I always have neck pain but thought that it was arthritis in my neck. Now, I'm thinking that I should probably get tested for Lyme disease, just in case. Do you get as much joint destruction with Lyme as you do with RA, because my feet and hands are pretty bad and I just assumed that it must be RA only????

Thanks,

Jeni

[Maz]

[user=1749]Jeni[/user] wrote:

I haven't been on in forever and finally decided that I should check in again. I had been feeling great for 3 months with 3x a week mino (100mg once M,W, F) but suddenly I started getting really sore again. It has been about 6 months since I initially started the mino and I thought that if I was going to have some kind of bad reaction that it should have already happened? I have been only taking my Enbrel 1 time every two weeks instead of the usual 2x per week. I had to take some Enbrel a whole week early because I was really nervous that I was going to have a severe flare-up.

Anyway, I came back to ask people with RA if they are taking 100mg mino 3x a week or are people finding more luck with 200mg 3x a week? While I was searching for this, I saw that someone posted that neck pain is really common with Lyme disease? I always have neck pain but thought that it was arthritis in my neck. Now, I'm thinking that I should probably get tested for Lyme disease, just in case. Do you get as much joint destruction with Lyme as you do with RA, because my feet and hands are pretty bad and I just assumed that it must be RA only????

Hi Jeni,

Sorry you're having a return of symptoms. 🙁 My first thought about this going by what you've shared…just a fellow patient thought…is that, as you are now spacing out your Enbrel, you're starting to experience some herxing. As some point when weaning from immunosuppressives, herxing is naturally going to occur. This is because the tetracyclines need a functioning immune system in order for bugs to die. Tetras don't actually kill bugs (they just disable them) and it's the immune system that actually goes in for the kill. So, what you're experiencing may actually be a delayed die-off now that your immune system is starting to kick in a bit more on the reduced Enbrel dose. It may also be a bit of drug rebound. When tetras, bacteriostatic abx, are taken in combination with immunosuppressive therapy, they are likely acting more as an additional DMARD than doing any actual bug-killing.

The neck pain does tend to make Lyme suspect, because RA normally spares the spine and neck, so it might be worth getting standard tests run (ELISA and Western Blot), first, to see if you show up with a CDC positive, which would save you money and further testing. If not, then it's worth taking the further step to get the IGeneX labs run, because if it is Lyme, then you'd likely need a combination abx approach.

In the context of rheumatic disease and Lyme, it's not one or the other, but that the infection mix of Lyme has triggered the RA. It looks like an autoimmune disease, but the immune system is actually doing what it's supposed to be doing…looking for intracellular infections it can't find. So our tissues become the collateral damage. Lyme can sometimes cause quite a bit of damage to joint tissue and sometimes people are spared damage. It's a very individual thing. It would actually be interesting for a study to be run on Lyme patients who are both seronegative for (meaning no RF or anti-CCP) and seropositive for RA to see if this may factor into whether susceptibility to joint damage occurs more in seropositive RAers. The question may be moot, though, because it's already believed that seropositivity means greater risk for joint damage…so may not matter whether it is caused by borreliosis or mycoplasma or chlamydia pneumoniae, etc.

This link helps to explain how Lyme can mimic autoimmunity…in this short video they are talking about neurological Lyme, but the same applies to rheumatological manifestations of Lyme, as the mechanism is similar.

http://envita.com/sections/disease/lyme/default.aspx

Hope something here might help, Jeni, in your quest for answers. If you find you need a LLMD (Lyme Literate MD), Road Back volunteers all hold the ILADs listing for these docs by state. Just let us know if you need a list and how far you're willing to travel. There is quite a healthy list of these docs for Washington state.  

Peace, Maz

PS I have heard of Dr S. in Iowa actually prescribing the Harvard Protocol (100mg once or twice daily) to folk who are currently on other DMARDs. Thinking about this, it actually makes good sense, because daily mino dosing will provide more immune modulation for when it comes time to start weaning from immunosuppressives. Later, when off these other drugs entirely, it then becomes a question of dialing down the mino to find the optimal dose – again, though, some herxing is bound to be expected during this process, because die-off has to occur at some point. 😉

[Jeni]

Hi Maz,

Thanks for all the info and your thoughts. I thought that the video was quite informative as I have never really looked into Lyme at all. Maybe I am herxing now, you may be right. I just thought that it was too late for that, but it makes sense with my reduction of Enbrel.

Do you think that the docs on the Lyme list for Washington state also treat RA? I know that I got some numbers before for RA docs here using mino therapy, but one was really far away, and the second I had actually looked into, and didn't feel good about. Does anyone do phone consults?

Thanks,

Jeni

[Maz]

[user=1749]Jeni[/user] wrote:

Thanks for all the info and your thoughts. I thought that the video was quite informative as I have never really looked into Lyme at all. Maybe I am herxing now, you may be right. I just thought that it was too late for that, but it makes sense with my reduction of Enbrel.

Do you think that the docs on the Lyme list for Washington state also treat RA? I know that I got some numbers before for RA docs here using mino therapy, but one was really far away, and the second I had actually looked into, and didn't feel good about. Does anyone do phone consults?

Hi Jeni,

If this helps, Lyme was actually uncovered in Lyme, CT, because a mother, Polly Murray, blew the whistle to the Health Dept, as an inordinately large cluster of kids and adults were coming down with JRA, RA, Lupus and other AI-like diseases. So, yes, if a person is diagnosed with Lyme and also has an AI disease, then an LLMD should treat it and any coinfections of Lyme with antibiotic therapy. It's very important to research the docs on the list in advance, though, because some will be more Lyme Literate than others and each will have their own approach to treatment.

Unfortunately, I'm not very familiar with the west coast LLMDs in the Washington area, but if I send you the list, you could join a Lyme support group on Yahoogroups for Washington and then ask them who they would recommend. Getting insights from other patients about how particular LLMDs work is a good way to get recommendations.

Will send you a PM with the list!

Peace, Maz

[Jeni]

Thanks Maz!

Jeni

[Maz]

A pleasure, Jeni…just sent you a PM with the LLMD list for Washington. 🙂

Peace, Maz

[Jeni]

Thanks Maz!

So funny, my boyfriend's back doctor is on the list! Dr. M is really great, and come to think of it, he did tell me that he treated arthritis! I just never thought about it again. He is a huge proponent of integrative medicine and exercise for healing your body.

I also saw a whole bunch of doctors in Bellevue which is just a few minutes from my home in Issaquah.

Thanks again!

Jeni

[Maz]

[user=1749]Jeni[/user] wrote:

So funny, my boyfriend's back doctor is on the list! Dr. M is really great, and come to think of it, he did tell me that he treated arthritis! I just never thought about it again. He is a huge proponent of integrative medicine and exercise for healing your body.

Jeni, what a small, small world!!! :roll-laugh: Wouldn't that be great if your boyfriend's doc turned out to be the doc for you? Please let us know how you get on, if you decide to pursue this angle further.

Peace, Maz

[Jeni]

Hi Maz,

I will definitely let you guys know if I go to see him. I like how he treated both my boyfriend and his daughter. Both were is separate car accidents and Dr M. used traditional meds, MSM, glucosamine, and exercise to treat them. He seems to pick the best of all medical traditions. Sara was referred to him by the hospital in Bellevue here because he specializes in auto accident recovery.

I think I will call tomorrow and see if he is familiar with antibiotic treatment for RA.

Thanks again!

Jeni

[Author]

Posts