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» LymeNet Flash » Questions and Discussion » Medical Questions » When do you give up and go the AI route?

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Author Topic: When do you give up and go the AI route?
Kudzuslipper
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Hi Lyme Netters. Sorry to be here at 4 in the morning, unable to sleep due to drawing pain in my legs and feet. Since February I have been falling back into symptoms that I either have not had or had for very brief flares for over 2/3 years.

My inflammation markers are back through the roof and I am feeling it with joint and muscle pain. Migraines. Neck ang jaw pain. Exhaustion. Exhaustion. Exhaustion.

I first noticed my decline cause I had actually worked my way up to 1.25 miles at over 3mph on the treadmill... (Pathetic I know, but good for me) And before my symptoms really kicked in I found my speed and distance declining. And then the symptoms started creeping back. This follows an incredibly stressful period.

Any way. I'm so done with chasing this ghost!!!! Dr. Has me on ceftin, doxy, flagyl. I feel worse... But it doesn't feel like a herx (how I know ... I really don't know)

Has anyone ever after years of fighting Lyme and co. gone the autoimmune route? Gonna try plaquinil before I try prednisone or biologics. I've only taken it a short while before but with abx and my stomach couldn't take it. So I'll try it alone.

But I can't take this pain again!!!!

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Kudzuslipper
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By the way. Family of autoimmune sufferers. Both sisters are in long term remission from lupus. (They did low dose prednisone, one did it with plaquinil too) Father had an always changing Dx. But obviously AI.
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sixgoofykids
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I always felt Plaquenil helped me. I took it the whole time I was on antibiotic Lyme treatment.

I think if you've been on abx for a long time, at some point it might be time to try something new. The entire time i was in Lyme treatment I worked on detoxification and trying to calm down my immune system.

Plus, all those meds and all that killing off of bacteria, makes us toxic. That needs to be addressed. Not to mention all the inflammation.

A good functional medicine doctor can help you get the right testing to get your body working better. They address digestion, hormones, methylation, etc. Just killing bacteria isn't enough to get fully well. This kind of work might even complement your Lyme treatment. Or maybe you take a break and do this kind of work, then when you feel a bit better, revisit whether the Lyme needs more treatment.

I like Dr. J in KS idea that it's not all about herxing. That herxing is a sign that you're making the body too toxic.

Follow your intuition. Your body tells you what it needs if you listen.

--------------------
sixgoofykids.blogspot.com

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LisaK
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I am right now trying the DNA route.

results yet to be seen, but I do feel 'something' happening.

gene dr says this is main reason why my body doesn't let go of the diseases. I think he has the right idea.

and for immune....

this has really helped me NOT to get colds, viruses and anything else since I am on it:

Enzyme Defense by Enzymedica. it is great stuff. I just take one extra strength pill each morning an hour before eating.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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lymeboy
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Are you diagnosed with Lyme? Did you have multiple WB tests done through stonybrook or IGX?

If you have Lyme I cannot tell you enough that Prednisone is VERY dangerous. People with autoimmune disease do not always find relief from Prednisone treatment.

I don't know enough about your situation, but you may consider a new doc, new ABX protocol.

Have you modified your diet? Abstain from sugar, alcohol and Gluten?

Eating a high vegetable/ somewhat lowfat diet has been helpful for me. Lyme does flare up out of nowhere sometimes.


I cannot say whether AI is your problem and noit Lyme. But Prednisone scares me. ESPECIALLY for a Lyme sufferer. Not the right drug at all.

Just my two cents. You need to do what you think is best and with the help of a doctor.

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Keebler
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-
Basics like being gluten free, considering dairy free, non-GMO, non-processed foods, etc. important, of course. Going scent free and avoiding chemicals, etc. Wise balance of sleep and gentle movement. Still . . .

Babesia, Ehrlichia, Anaplasma, Bartonella, Cpn, Mycoplasma, etc. should all be considered before giving up.

All too often "autoimmune" is a misdiagnosis for any number of undiagnosed, untreated, undertreated chronic stealth infections.

Lyme is just one of those.

And it can take many years of treatment for any one of those. With multiple infections, it's just more complex. But giving up is not really the way to go. Other approaches, a more experienced doctor, etc. . . .

All this time, of course, immune support is key along with other support methods but if very direct specifically targeted treatment is not forefront, well, not such very good odds in the long run.

Stealth infections take persistence and very direct approaches, for long enough but with someone who really knows as much as anyone on earth can about them.
-

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Keebler
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Lupus is often misdiagnosed lyme or other stealth infections. I was misdiagnosed as having lupus as have many who later found out it was really lyme (and usually babesia in with that).

as for your interest in taking: prednisone or biologics. They could be the nails in your coffin. Seriously. Immune suppression is NEVER the way to go. Immune support is, with direct infection attention.


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
-

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Keebler
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You're not still doing the treadmill, are you? Hope you wrote about that as being in the past. If not, though, be sure it's no more than just a comfortable stroll speed and not too long at one time. STill, the petroleum off gassing of those and the electronics can really do some folks in.

Walking out of doors is best, when you can.

Be sure to avoid being in the same room as a cell phone unless you are talking on it - and especially keep it out of your bedroom. Best to go with a land line phone at home, though.

As for your crying out in pain, understandable. There are various treatment options that do have DIRECT - remember that vital element DIRECT action against infection.

I wonder if liver support is covered enough, for a start:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.

You might change the form of MAGNESIUM you are taking, or the dose. The magnesium link is in this liver set.
-

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Keebler
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Do you have a foam mattress? If so, that could be causing a lot of problems with pain for a number of reasons.

Or any regular new mattress? The chemicals they are bathed in can hurt us.

Any new textiles in your home? Clothing should be considered, too, in relation to the chemicals they go through before market.
-

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Kudzuslipper
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Hi all; thanks for the input! I have been doing well until February. I have not been on abx (except for other things occaissionally) since 2013. Not saying I had no symptoms. But they were short and mild.

My traditional WB's showed and continue to show only band 41. I was not igenex positive (meaning they didn't call it as positive) But I had 3 Lyme specific positive bands and two Lyme specific IND bands. My LLMD at the time thought it was Lyme. I treated for aggressively with multiple protocols, with detox for 18 months. And then for many months the next year too.

If it is Lyme I have had it for 30+ years. I don't believe I will ever irradicate it.

I do eat well... But honestly does't seem to make a difference.

I do still do the treadmill cause it has been the only thing I have been able to do and it was helping tremendously until the flare.

Lymeboy. I'm petrified of prednisone. But I do have family history of having remarkable success with it.

I do believe that many AI are misdiagnosed Lyme. But I'm wondering now if Lyme is being misdiagnosed a lot too!

I just want someone to tell me definitively what I have and what will help.

So very tired!

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Ellen101
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I have been caught between a diagnosis of lyme and autoimmune issues from the beginning. The LLMD's insisted antibiotics where as the Rheumatologists recommended enbrel or humira for psoriatic arthritis/spondylitis.

I have hashimotos and autoimmune thryroid condition as well as psoriasis. Some will argue these conditions are all due to lyme others will say not so....

I did the antibiotic route and had mild improvement but not a lot. For me the biggest game changer was diet.

You say you eat well, but you may still be eating the wrong foods for you personally.

I am very strict, no gluten, starch, grains or dairy. The only sugar is honey. The only meds I take are armour thyroid and estradiol. They are compounded especially for me so as not to contain any gluten or starch.

I was tested and treated for SIBO with the drug rifaximin. I did three cycles of it over several months. I now take a low dose compounded erythromycin tab at bed time that acts as a prokinetic.

I have been doing this diet for the past year or so and feel great! If I accidentally get exposed to something I should not have I feel it as the pain returns.

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lpkayak
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I really agree with the last two paragraphs of six's thread-about herx

Also...many relapse or dont respind well to tx because simething else is going on

Metals, parasites, mold. Im.dealing with the mold right now and there are many on the mold support groups who have to treat mold to get rid of lyme and treat lyme to get rid of mold...among other things

Good luck

--------------------
Lyme? Its complicated. Educate yourself.

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sixgoofykids
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quote:
Originally posted by Kudzuslipper:


If it is Lyme I have had it for 30+ years. I don't believe I will ever irradicate it.


I did, too. [Frown] But I got better. I had fibromyalgia and fatigue for over 30 years.

--------------------
sixgoofykids.blogspot.com

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Lymetoo
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I had it for 42 years before even beginning treatment. There is hope for you!

Are you eating nightshades?

Do everything you can to get rid of inflammatory foods. I read something the other day that "autoimmune" is really "just" inflammation.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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And while you get rid of foods that can cause inflammation, say "yes" to foods with the greatest amount of antioxidants.
-

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Robin123
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And eat organic with no GMOs in food...
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glm1111
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Check the PARASITE WARRIORS SUPPORT THREAD. Many who are chronic find that treating parasites is key. Google parasite symptoms and check the symptom list at Humaworm.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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MichaelTampa
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What do you mean by "AI"?
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A.G.
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www.roadback.org

Our immune system is very smart.

Have you been on iv antibiotics?

I had negative after negative after negative Igenex WB over 4 years. That doubt in my mind only allowed the infection to do more damage.

3 mos before my recent CDC positive labcorp WB, my Igenex test had solely band 41+.

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A.G.
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Are you in a push/crash cycle?

Pushing my body and not allowing it to heal with rest did major damage.

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Kudzuslipper
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Respectfully, I really believe that electrimagnetic fields, mold and parasites are real. But I just don't have the luxury of going down these paths. I live in an old house. I work in TV on a computer in front of tvs tied to my phone all day long. And I am tired, so very tired of drs and other health people "who know exactly what is wrong with you" to sell the supplements and treatments that are supposed to help but don't! Just make you poor.

I just realized that a part of this mood I'm in is due to the Flagyl. When I was on it regularly 2 weeks on 2 weeks off like clock work on the 4th day of the on I got depressed and tearful. It took 3 weeks to get here this time. So the world is much darker right now....

Food. I have done paleo, Atkins, and just low carb within reason (this is where I feel the best, meaning a tiny amount of whole grains like rice or sweet potato once a day) We eat organic as much as possible. And mostly home made fresh foods. I avoid nightshades within reason, As bell peppers are one of the five foods out of 100 I was not allergic to. The thing is when I am doing well, like I have for over a year, when my inflammation is low, none of this matters! Admittedly, when I'm in a period like I am now, careful eating helps.

I suspect it is the intense stress I was under that brought me here... We moved my 91 year old mom, she got dx'd with MDS (bone marrow cancer,) my partner at work broke his neck, and my boss told me that the project I was working on was the most important in her career. So I ignored the signs for almost 3 months and just kept going. Just kept showing up (like Surprise always tells me:) what else could I do?

Oh Dear. What a stubborn pity party I just wrote. I should probably just erase. But I'll post cause where else can I say all this?

Ellen, I am curious about your successes. I will pm you.

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Kudzuslipper
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I guess I'm just wondering if when I get this bad... If treating like an auto immune (AI) would be quicker and in the long term safer than abx? I've always been a borderline case of Lyme. Even igenex and this other intense test that I forget the name of didn't conclude that my inflammation was due to Lyme.
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A.G.
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Prednisone is not safe. The side effects are horrific mentally and physically.

The grass is not greener and the treatment not quicker, easier nor safer for Rheumatic illnesses.

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Kudzuslipper
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I've never done IV. Yes A.G.,I did just have 3 months where I had to push push push! And here I am crashing. But how do you avoid that? Sometimes life just throws that at you.

It's my fear of prednisone, which is why I am posting this... I really want to hear all sides.

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marypart
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You might want to check out www.roadback.org like in AG's post. There are several people over there using Abx for autoimmune diseases but also using Low Dose Naltrexone.

On kickas.org there are some people, I believe, who have used both antibiotics and autoimmune suppressant biologics, like Embrel, for autoimmune disease.

I know my son's LLMD, who is a Rheumatologist, uses both Antibiotics and Biologics, and sometimes together. She had my son try Embrel for a brief period when he was sick... although he did not seem to benefit. He's been in a complete remission for three years after treating Lyme and Coinfections for almost two years.

So, not everybody does it the same way.

--------------------
Son, 26, Dx Lyme 4/10, Babs 8/10
Had serious arthritis, all gone.
Currently on Valtrex
Daughter, 26,bullseye 7/11
arthritis in knees, cured and off all meds. .
Self:Lyme, bart, sxs gone, no longer treating.

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Ellen101
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Kudz I think you are smart to investigate other avenues as I do believe not everything is linked to lyme. Once I stepped away from lyme treatment and began investigation other possibilities I began to improve.

lyme can be a big roller coaster and a big money pit. I really think if I had stayed with my first LLNP she would still have me on antibiotics...

At some point it is time to look elsewhere. I agree there are some things you can't change where you live, work etc and who knows what part or how much of a role it's really playing any way. Stress will always be a part of life, how we deal with it is up to us.

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Kudzuslipper
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Thanks everyone! It is comforting and refreshing to get your advice. The dark, dark gloom has passed. Pain a bit better. (Maybe it was a herx after all) I am still researching. Weighing options.
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Marz
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It sounds like you are aware of the possible horrors of prednisone, but just read this today from LDRD.

http://www.lyme-disease-research-database.com/lyme_disease_blog_files/book-excerpt-ghost-caller.html#unique-entry-id-330

At least you would know to stop if having a reaction whereas she thought if she just kept going she'd get better.

Glad you're doing better and maybe not necessary.

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Kudzuslipper
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Thanks, Marz. It brought back memories of repeated doses of prednisone for rashes before Lyme Dx (rashes never went away on it either) And the prednisone always made me feel like I had a headache in my bones!

Easier to think rationally when you feel a bit better. I go to the dr. tomorrow. Gonna ask for plaquinil (name brand, I heard it's easier to tolerate on stomach)

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