posted
I saw an infectious disease spcialist, as my PCP wanted me to, even though I'm seeing a Lyme doc. And she said the following:
lyme and coinfections are treated for a short time w/things like doxy or quinine (anti-malarial). She gave the metaphor of Lyme rampages the city like a hurricane and destroys it. The med stops (taken short term) the hurricane but ppl dont feel better b/c the city has to be built up, eg supportive care. Said she sees patients of the dr I see (my lyme doc) come to her b/c they dont feel better after years of treatment. I thought it could take years for it to be mostly gone anyway. And afaik, my lyme doc is one of the best.
I've looked online a bit and it does say some coinfections are treated w/anti-malarials. I'm on Ivermectin and she said that won't treat co-infections. But I've read it CAN.
She told me to do my own research and come back if I wanted her to do more testing for co-infections and lyme. I've had the Ispot done already.
So is she totally off here? B/c as a patient, when doctors tell you two different things and you feel like crap, you get anxious.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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Keebler
Honored Contributor (25K+ posts)
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posted
- This has now become a start to your reference / study guide. Hope it helps.
While it's nice to actually hear an ID doctor admit that lyme can be horrid. And that there are some coinfections.
And nice that an ID doctor would even suggest support methods (not sure how entailed theirs may be, though). However . . . major slip ups and clear clues this is not the kind of doctor who would be able or willing to adequately address the complexities of persistent infection.
Errors:
" . . . lyme and coinfections are treated for a short time . . . ."
" . . . The med stops (taken short term) the hurricane" (implying the infections are cured)
First part false: " . . . ppl dont feel better b/c the city has to be built up, eg supportive care.
Second part partly true:
" . . . ppl dont feel better b/c the city has to be built up, eg supportive care."
It's a trick sentence, really as if you agree with the second part, it's assumed you will agree with the first. But, supportive care has to be alongside comprehensive assertive infection treatment, not instead of it.
People don't feel better for various reasons that include:
infection(s) have not been adequately treated with the right combinations / rotation of specific anti-infective measures
& support methods may not be on board that are right for that person's body at that point in time.
etc.
And, one more irritation bit:
"Said she sees patients of the dr I see (my lyme doc) come to her b/c they dont feel better after years of treatment."
Well, it's terribly unprofessional of her to make such a claim. Borders - if not actually crosses - the line of defamation of character regarding the other doctor. While she is certainly entitled to her opinion, if it was pointed at that doctor in that way, not at all proper conduct.
She could have voiced her concerns about your path without defaming the doctor.
As to her claim that she sees patients of his [implied: who have failed with him]. That's quite a claim that I'm not sure I'd believe.
Still, talk with your area lyme support groups - find out what others around you encounter. Just make sure the group is ILADS "minded"
and get good at knowing the difference between ILADS and IDSA.
Good luck. -
[ 06-27-2016, 06:52 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- You say "when doctors tell you two different things and you feel like crap, you get anxious." (end quote)
Understandable. And I'm sorry you were put through that. Some of the experiences many here have faced with ID doctors have been - from inept to medically negligent. So, if this is the only one (or two) count yourself lucky to have the opportunity now to stop any further trip ups.
But, you have to be prepared to stand tall and not fall into place with the way the insurance and medical system is set up.
This is where patient education includes details below - for a start. Then you will be able to learn beforehand if a particular doctor is even worth your time, money, effort.
As for going to any doctor because your PCP suggests it, hopefully - armed with knowledge - you won't fall into that trap again regarding this matter. Your PCP does not know about lyme and they don't have a clue that the ID doctors don't either.
And / or your PCP / ID doctor do not agree with ILADS' perspective and want to stop you from pursuing that path.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- I just went to your webpage for a bit more background. Stunning talent you have there, very impressive.
A word about the materials you use regarding chemicals, ventilation and the likely need for very good liver support. Although, it may be that more and more of your work in on the computer and not actually chemically based . . . just to consider that
many with lyme are more sensitive to chemicals so be more careful. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by 6Hypnone: I saw an infectious disease spcialist, as my PCP wanted me to, even though I'm seeing a Lyme doc. And she said the following:
lyme and coinfections are treated for a short time w/things like doxy or quinine (anti-malarial). She gave the metaphor of Lyme rampages the city like a hurricane and destroys it. The med stops (taken short term) the hurricane but ppl dont feel better b/c the city has to be built up, eg supportive care. Said she sees patients of the dr I see (my lyme doc) come to her b/c they dont feel better after years of treatment. I thought it could take years for it to be mostly gone anyway. And afaik, my lyme doc is one of the best.
I've looked online a bit and it does say some coinfections are treated w/anti-malarials. I'm on Ivermectin and she said that won't treat co-infections. But I've read it CAN.
She told me to do my own research and come back if I wanted her to do more testing for co-infections and lyme. I've had the Ispot done already.
So is she totally off here? B/c as a patient, when doctors tell you two different things and you feel like crap, you get anxious.
I think it's actually really valuable info she provided regarding the Lyme doctor. We have so little data on the actual success rate of these LLMDs. We also can't personally interview all their patients. So another Dr. saying, I see a lot of their patients and they are still sick after years of treatment is something we can't really learn any other way at this point.
I'm taking Ivermectin now and am herxing a lot from it. I think treating parasites is a major piece of solving the Lyme puzzle. Maybe in the end the ID doctors position won't be completely wrong. Maybe Lyme isn't really just Borrelia, but the combination of Borrelia and parasites. Yes Borrelia persists but why is Lyme so prone to treatment failure when using only antibiotics as compared to Syphilis, which also persists?
"The long latent stage seen in syphilis, followed by chronic central nervous system infection and inflammation, can be explained by the persistence of atypical cystic and granular forms of Treponema pallidum." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564911/Posts: 131 | From CO | Registered: Jul 2015
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Keebler
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posted
- project,
yes, true that it's never "just lyme" and parasites are a key matter. yet,
your 2nd to last paragraph implies the ID doctor want the Ivermectin. It's the opposite.
The ID doctor said Ivermectin was no good, though. That was prescribed by the LLMD.
"I'm on Ivermectin and she said that won't treat co-infections. But I've read it CAN." (end 6Hypnone quote) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
A friend is telling me Iver. is dangerous (he's trying to help but doesn't know all the research). He's afraid it could be causing some issues I"m having that are making me contemplate 'giving up' (eg, major pain in toe is the big one, not sleeping due to it, itchy skin, burning skin).
But isn't Iver used to treat co-infections quite often?
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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posted
Keebler sorry what I meant was that maybe the IDSA Drs aren't totally crazy. They see that many Lyme patients are not getting better just taking long term antibiotics, and the conclusion they are drawing is that it's not caused by chronic Borreliosis.
I don't think Ivermectin is actually very commonly used by LLMDs. I know Klinghardt has it in his parasite protocol, but I don't see it in very many other Dr's protocols.
It is supposed to be safe and well tolerated, but I think in general most of the time it's being given in single doses and not taken for long periods as people with Lyme generally use it.
It definitely kills the co-infections Babesia and Protomyxzoa Rheumatica, and it's known to be active against filarial worms which some are implicating in Lyme.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 6Hypnone
If you are having "some issues I"m having that are making me contemplate 'giving up' (eg, major pain in toe is the big one, not sleeping due to it, itchy skin, burning skin)." (end quote)
And you think it's related to something you are taking, stop it. Get good food into you and rest, and generally take care of yourself, of course,
and call your LLMD tomorrow, first thing.
You could be having a bad reaction. You need to talk with your LLMD about this. Now, it could be any of the things you are taking, or other variables. But your doctor can best advise you from here.
Revisit your liver support plan. It may not be adequate for you.
And your magnesium type / dose / frequency. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- project,
I'm hearing what you say, too. But a short course of just doxy is not the way to go.
both 6Hypnone & project,
Just because it might not all be lyme, does not mean lyme can be ignored or should be treated haphazardly without attention to the science of how it functions.
A short course of doxycycline ignores the cystic form of lyme and the timeline that lyme requires with its replication patterns. Biofilm, persistence, etc. also to consider.
Any single antibiotic poses risk of failure.
And as the ID doc also suggests, treating babesia just with quinine for a short time can spell trouble, too.
Many have trouble with various Rx protocols for many reasons, though, I know that. Still, just turning one's back on lyme can be dangerous. Of course, there are various approaches to take.
Unfortunately, most IDSA ID doctors are simply not equipped for such a task, nor is the medical system, really. So much is up to the patient to figure out.
But there is no time to waste going to doctors who are not up to speed, willing or able to really roll up their sleeves and stick with it.
My main point is that all infections should be faced head on, assertively, fully, in a manner (and timeline) that works for each of us and with proper supports on board at all times as well.
As for treatment not working out with one's LLMD, if that is the case, communication is where to go back to.
No treatment should be utterly dreadful. No herxheimer should be too uncomfortable. If it is, something should be done to mitigate that. Just because I talk about assertive treatment of all aspects, rushing is useless and can be too harsh.
Communicate and inquire. Explore all options with and those outside of the LLMD's scope. Not all LLMDs are equal and some just might be a better "fit" than others.
[Yet always communicate with LLMD if treating with them and you want to change anything at all.]
Still, understanding the science of how lyme works is essential to being able to assess whether any doctor has the skills we need.
And, that's just the start. With each coinfection, there are so many aspects.
But others have gotten better. It is possible. And there are choices. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- For those who have trouble with the Rx approach:
How to find an ILADS educated LL professional in complementary fields (naturopathic, acupuncture, etc.)
Also includes article and book links by all kinds of LL authors - and information about herbal and nutritional supplements.
The books by Stephen H. Buhner are excellent and you might seek those out first. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I thought Iver was pretty common. And yes I believe she's using it for Babesia. Im taking it 3 days/week, one day off, one day on. I've been on it since mid may. The mag she wants me on (Magnesium Threonate) just arrived today actually.
I had called and left a message about my GI issues and the sharp pain in my toe, and was called back and told that the doc wants to wait to talk to me about it at my appt. I have a phone appt Fri (with the other girl there that is good w/genetics), and one in Aug. w/the doctor. She is an LLND and a nurse.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Magnesium Threonate is a very good choice for nerve fibers. Hope it - and all you do - helps.
Next time, you might check out the price at www.vitacost.com as they carry and form there by several brands and usually have good prices on it.
In the meantime, waiting for your next appointment, you might do shoe roulette and figure out if one or two pair work better than what you've been wearing. It would be nice if it just came down to the wrong shoes, eh?
And you have a very good excuse to be asking for foot massages. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sorry, just trying to learn something, not hijacking the thread
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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posted
The Mag Threonate says its 144 mcg (from 2000 mg magtein magnesium L-threonate). So i'm getting 144 mg correct?
I did get these at Vitacost. Total was over 90. I still have one more to get. Not good for someone that makes 400/month.
I wish it was shoes. I have Vans with supports. The pain is in my other foot now as well, and i think I felt it in my left hand (finger). I'm getting so anxious about this. Feeling hopeless.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 144 mcg is 14.4 mg - it's a bit confusing to also have the 2000 mg. They might mean the lower number is the elemental mag. while the larger number is the whole food amount so to speak.
You might post the link or brand name. But I'm "allergic" to numbers and my brain is now in quicksand for the day, I think. Maybe someone else could better decipher it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Sorry..I had an error there. I meant 144 mg. My doc wants me to take 300 mg. The bottle says taking 3 equals 144...so I'd need 6 for 300! This bottle will be gone in no time if so. And I dont want to be taking 2000 by accident!
It's Life Extension Neuro-Mag
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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Not good for someone that makes 400/month.
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