Enbrel and AP with Lyme?

[marypart]

I don’t dare ask this question over at Lymenet… afraid I’d get strung up.

But, my son has had no progress on his arthritis– still loaded with enthesitis and costochondritis. He’s really thinking of trying Enbrel.

Has anybody with Lyme used Enbrel (or other biologic) along with antibiotics during Lyme treatment?

Thanks.

[nspiker]

marypart,

I don’t know of anyone who has used biologics with lyme, and those that have usually throw lyme into overdrive. I’m sure you know all the facts already. Has he considered low dose prednisone or plaquenil instead of the biologics?

I definitely had an upsurge of inflammation treating lyme /babesia, including costochondritis. Omega 3 Fatty Acids, Tumeric and high doses of Vitamin D3, have resolved the costochondritis.

Maybe someone who has tried the biologics will chime in…
nancy

[Eileen]

Marypart,

I did for a very short period of time. AP and Enbrel. I had little to no response to Enbrel — I believe 11 injections. Then I stopped and went completely AP, zithromax, plaquenil and mino. What I can tell you is that I took the combination of the three together over a five-month period and got sicker, and sicker, and the relentless, massive herx lasted almost two months — could have been even longer. I just knew I was sick, but am much better now. I’m sorry to hear about your son. I have a child w/LD too. It’s strictly a personal choice for each any everyone of us and I wouldn’t do it again unless I ran out of options. As for my son, I could not agree to biologics. From what I gather, the inflammation needs to get under control so the antibiotics can do their job. I think plaquenil might be the way to go. It worked for me. 😀

Hope this helps.

Eileen

[Maz]

@marypart wrote:

Has anybody with Lyme used Enbrel (or other biologic) along with antibiotics during Lyme treatment?

Hi Mary,

I know of two Lyme Literate MDs – Dr. Z in VA and Dr. G in NJ, both rheumies – who do use the biologics for their rheumatic Lyme patients. There was also a member here, Susan Lyme/RA, who was a patient of Dr. Z’s and who did use one of the biologics (Enbrel?), abx and herbal adjuncts, as prescribed by this doc.

I can wholeheartedly understand your son’s desire to be pain-free, especially as he must feel his youth slipping away in an arthritic body. This is not an easy decision for anyone and must be a very personal one.

As both Nancy and Eileen have shared, most Lyme patients do horribly on anything immune-suppressive, as these just allow the infections to proliferate. I have come across some Finnish research on the Columbia Lyme website where they did murine studies on Lyme infected mice, who were treated with the IV abx, Ceftriaxone (aka Rocephin), and became sero-negative for Lyme. However, upon initiation of biologic therapy, these mice became sero-positive for Lyme again and live spirochetes were cultured from serum. You can read this article here:

http://columbia-lyme.org/research/keyarticles.html

Further research by Yale researcher, Krause, also tied lymphomas to patients who were immune-suppressed (either with Rituxan or who were a-splenic) with chronic babesiosis. It was a small cohort of patients and a retrospective study, but the results were pretty compelling. He presented this research at the Institute of Medicine’s: A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomesconference last fall. You may be able to locate his talk at the following link (he spoke several times throughout the conference and I can’t remember which segment he mentioned this research in), though PubMed also has this research in its databank:

http://www.tvworldwide.com/events/iom/101011/default.cfm?id=12856&type=flv&test=0&live=0

I also came across a case study on the use of biologics in a Lyme patient, which was published in the Spring 2010 RBF eBulletin, entitled – Remicade May Reveal Underlying Borreliosis by Mimicking Lupus:

https://www.roadback.org/emailblasts/ebulletin_spring10.html

Interestingly, if you read the package insert on the biologics, some of the warnings include contraindications, such as the potential development or exacerbation of MS in those patients with close family members with MS or a predisposition – Lyme? Also, of course, the development of lupus-like disease, or drug-induced lupus, as with the Remicade in the case study above – again, Lyme? It’s hard to say if this is the cause of these things, as correlation doesn’t necessarily imply causation, but as I have a brother with MS, I have Lyme disease, and I have experienced drug-induced lupus with minocycline, I’m definitely not a good candidate for the biologics.

I know this all sounds rather depressing, but I suppose it’s better to have some research to go on when making this type of decision, so at least some of the variables are known in advance?

I may have asked this before – sorry if so – but have you ever been able to connect with Michele, here on the forum? She also had suffered from similar issues as your son and I believe the root cause for her was found to be babesiosis. No doubt you’ve already looked into all this…just a suggestion. 😉

Wishing your son all the best as he faces making this decision for himself and for your mother’s heart.

[Michele]

Hi Mary,

I wondered how your son was doing and if you are still seeing Dr Z?

Michele

[Maz]

Hi Michele,

Long time, no see! Just saw this post and recalled that Mary had posted an update about her son in late May here – now in remission!!! 🙂 :

viewtopic.php?f=1&t=10698&p=74193#p74193

[Karel]

I visisted my LLMD for the first time last week, and, while we are still running more tests to see if I have lyme and no other factors are affecting the positive Igenex bloodwork, I discussed with my LLMD my increasing detoriation of my hands and feet (diagnosed RA) and the very limited effectivity of MTX and ABX (minocin). She mentioned that various of her patients were, to my surprise, on Biologics in addition to Lyme Specific ABX. We didn’t discuss much detail, but at that time it gave me big relief, having read that Biologics normally are contraindicated. I will, in the weeks to come, ask her for her experience, because this is important for me as well. I take two table spoons of premium fishoil per day and 4 curcumin pills per day, but it does nothing to me. (I guess I am not in a Herx, because besides some general tiredness and teh inflammation in hands and feet I feel pretty ok)
Best regards, K

[marypart]

Michele,

My son has been in a complete remission for so long that I’ve lost count now… must be two years at least. I wrote about him in the personal progress forum… “My Son’s Story.”

He did try Biologics in the second year– he tried Embrel– but it did not seem to do anything at all and after about 7-8 shots he started getting very bright red reactions at the injection site so we just decided to stop.

He just continued treatment… herbals, IV Chelation, oral antibiotics, antifungals, antiparasitics and antivirals.

He’s doing really well. In fact he was just admitted to Nursing school at his university.

Thanks for asking. I’m sorry to hear that you’re not feeling well. Are you going back to Lyme treatment?

Mary

[Anonymous]

Mary: glad your son is doing well. Can you post or PM the name of the doctor in Northern Virginia? (I am new and unable to PM you directly.) Thank you.

[PhilC]

For anyone who may not be aware of it, doctors are not supposed to prescribe a biologic drug unless all of the usual DMARDs have been tried and they failed to work.

Phil

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

[Author]

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