I've been on doxy for 6.5 months.It is working. My issues are mostly joint related- pain and inflammation. My LLMD wants to start me on Humira to protect my joints from erosion. I've trusted her completely up to this point. Also, we call my arthritic symptoms "reactive arthritis" not RA.
Have any of you been on humira and an antibiotic for your lyme?
Posts: 4 | From Boston, MA | Registered: Sep 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see this is your first post here, so, welcome (although sorry for the reason, of course).
No, I would not do Humira. There are other ways to support, not suppress immune function.
Please take a few deep breaths . . . I apologize for this series of questions and am afraid that you may be shocked if some of this is all new to you. So, good music, a few jokes to follow up after this . . . .
KEY: Is doxycycline the only antibiotic you are taking?
What about other Rx as per the LLMD, such as flagyl (or its generic) to help address the cystic form of lyme?
Single or even multiple antibiotic treatment causes lyme to go into cystic form and then it can become chronic. It needs a different kind of Rx. Antibiotics won't touch the cyst form. Combination / rotation of various Rx and support measures are vital.
Have you been assessed (either clinically or with labs) for other tick borne disease (TBD) such as bartonella, ehrlichia, anaplasma, babesia?
I would not do it. It just seems to be so risky when there is still a long ways to go with direct treatment. I would certainly explore other ways first, at least.
With lyme usually comes all kinds of other infections and some you may not even be aware of. Something like Humira that suppresses immune function can really put you at added risk.
With lyme, part of the immune system is so askew that parts of its function are literally flipped from what one might expect.
Are you taking MAGNESIUM 3-4 x a day? It's important for bone and joint health.
TUMERIC (Or its stronger extract, Curcumin if your gallbladder is strong, if not, stick with tumeric, less stress)
FISH OIL or other OMEGA oils?
There are various other specific nutritional supplements that can also help support collagen and joints.
Low Dose Naltrexone (LDN)discussed as a possibility?
While most regular doctors would not consider 6.5 months of treating lyme with even one antibiotic, if that is all that's being done, it's not enough specific treatment against lyme / TBD.
Is the doctor a true LL (lyme literate) ILADS "educated" MD or ND (and beyond)?
[ 09-04-2014, 11:25 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Ellen101
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posted
My Rheumatologist wanted me to go on Enbrel which I believe is similar to humira. My LLNP was strongly against it...
Posts: 1748 | From United States | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- TB is not the only infection that can be latent. Lyme can often bring to the surface other latent infection such as viruses, micoplasmas, etc.
Just because lyme is being treated (although it seems to be Undertreated) it could go bonkers on you.
Steroids (unless a life saving need & then with much specific Rx attention to lyme & TBD) are not to be used for those with lyme for this same reason of immune suppression.
. . . adalimumab suppresses TNF, which is part of the immune system, latent infections, such as tuberculosis, can be reactivated, and the immune system may be unable to fight new infections. This has led to fatal infections.[30] . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- In addition to making sure your diagnostics are adequate and the treatment is also adequate (in regard to questions above) . . .
you might rather explore this immune support to active infection treatment. It does not work well for all who try it but it does for some.
posted
I do wonder about RA medications, on whether it is truly contraindicated for Lyme patients.
I recall reading a post by Marnie a few weeks back where she was thinking out of the box and mentioned Methotrexate might not be a bad thing for Lyme(?)
My kid tests positive for Lyme and suffers from joint pains. Multiple rounds of Flagyl and other abx have not even touched the symptoms.
Maybe in some cases RA meds can be the disease modifiers they are claimed to be? That is my next hope if the abx are a failure for him (there is every indication that will be the case).
Posts: 655 | From USA | Registered: Sep 2007
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posted
No way would I go down that path. At least not at this point in treatment...but I am not a doctor.
Drugs like this suppress your immune system. This is not what you need right now. Then there are the very serious side effects. Very serious.
Doxy can not always take care of Lyme by itself. I would say it's rather rare for that to be the case. Have you been treated for all possible coinfections? Doesn't sound like it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
A superior method is to use herbal & nutritional anti-inflammatory products. The pharmaceutical anti-inflammatories suppress the immune system too much IMHO.
Ideas for non-pharmaceutical anti-inflammatories:
Coconut oil
Turmeric/Curcumin
Fish Oil/Omega-3 EFA's
Nettle Leaf - specifically protects joints from Lyme-related damage
Frankincense/Boswellia
Copaiba essential oil (sold in Brazil in lieu of NSAIDS like Advil)
Vitamin C
Antioxidants
Anti-inflammatory diet (no sugar, no nightshades, no gluten, no dairy)
etc.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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J Infect Dis. 2007 May 15;195(10):1489-96. Epub 2007 Apr 6.
Anti-tumor necrosis factor-alpha treatment activates Borrelia burgdorferi spirochetes 4 weeks after ceftriaxone treatment in C3H/He mice.
Excerpt:
. . . Conclusions: This report shows that, after ceftriaxone treatment for 5 days, a portion of B. burgdorferi-infected mice still have live spirochetes in their body, which are activated by anti-TNF-alpha treatment. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lymewarrior,
Wondering if you are on a gluten-free, dairy-free and GMO-free diet. It usually helps a great deal for many during treatment.
I've never eaten GMO foods (really, I've been off processed foods for decades) and later got off dairy. But, first, in just the first few weeks of being off gluten, my joints were better. Those foods can cause so much inflammation. As well as certain food additives.
I wish you luck as you sort out all of this. Be sure to connect with your local lyme support group (and be sure they are ILADS "minded") -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you ALL for your wonderful advice. Keebler, in response to your questions/ comments:
I am on doxy and tindamax- I take this once a month for 7 days to get rid of the cystic form of lyme.
My Dr. is from ILADS and in NJ, though now I live in Boston.
No Humira was my thought exactly bc prior to finding this dr I went through 11- as most of you have- and they all kept me on prednisone and methatrexate- later i learned that these were horrible for Lyme, and made my case 100 times worse once I was off of them. I was in a wheelchair.
I have been tested for other other co-infections and am negative. there is this new lab that has great results in finding bartonella- I will check the name of it in my files and share it with you all!
I will write more soon, and thank you ALL for such prompt responses
Posts: 4 | From Boston, MA | Registered: Sep 2014
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posted
I eat magnesium rich foods, have curcumin and turmeric,bosswellia, coconut oil, use flax, cacoa and chia seeds in breakfast shakes... I will look into the others you've all mentioned.
Before getting sick I went through the ringer of removing and adding things into my diet. I have been gluten free for over a year and a half, and I find that goat cheeses don't bother me but other types do.
Posts: 4 | From Boston, MA | Registered: Sep 2014
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Knee "arthritis" was what started it all for me and my knees ached constantly for over a year into treatment. I asked my doc how to cope with it and she mostly referred to herbal treatments which never seemed to do much...but then again neither did prescription NSAIDS. My doc mentioned Lyrica but suggested against it unless the arthritic feelings were too much to deal with, which they weren't.
First the normal antibiotics knocked it down. Then I started taking Tindamax and that made big improvement the first 2 times of use and then I felt I flatlined. My doc then switched the Tindamax to Flagyl and I got very strong herx reactions in the knees and noticed immmediate improvements. I was then switch to Bicillin shots...not sure how much that played into it. Almost 14 months into treatment normal day to day knee pain is all but in my past. Maybe a switch in meds will help.
Posts: 35 | From Western, MD | Registered: May 2013
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