Self Treating - Who is successfully treating without the help of an LLMD?

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Runninheid
Regular Member


Date Joined Sep 2017
Total Posts : 52
   Posted 5/11/2018 11:04 AM (GMT -6)   
Just wondering who all is self treating, and if you feel successful?

I've learned a lot over the last year, researching EVERY DAY. I'm wondering if I can save $600 per month by skipping the LLMD.

Seems the last five months, my appointments consist of me making recommendations in my protocol, and my doctor saying to give it a try. That's it!
DX Borrelia, Babesia, Bartonella and Ehrlichia June 2017.
Symptoms since at least 2007.
Started treatment June 2017
-Artemisinin, A BART, A BAB, Biaxin, Chlorella, Liposomal Glutathione, Magnesium, Omnicef, Prothrivers Wellbrain, Tindazole, Tranquility, Uplift, Fish Oil, B Vitamins, Vitamin D, gluten free, sugar free, dairy free, lemon water, detox tea, coffee enemas.
30%-60% Healed

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4880
   Posted 5/11/2018 11:29 AM (GMT -6)   
Plenty of people do this on their own with herbs. One can learn as much as half the LLMD knoweldge out their online.

Its good to get general labs like liver testing and thyroid when your killing critters though. You can pay online and go to labcorp or find a lyme friendly GP for this part.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32695
   Posted 5/11/2018 11:36 AM (GMT -6)   
What about a new LLMD?

$600 a month is a lot especially if you’re having to make recommendations


If you go to the J clinic it’s not that much per appt and they’re generally 3-4 months apart. (And he’s one of the most experienced Lyme docs)

Self treating with abx is a challenge - I did it for a year.
But I had a GP who did regular labs to monitor kidney, liver function etc


Are you thinking about self treating with herbs?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Runninheid
Regular Member


Date Joined Sep 2017
Total Posts : 52
   Posted 5/11/2018 12:15 PM (GMT -6)   
Astroman, my monthly labs have always been healthy, but I certainly don't want to stop getting them if I step away from my LLMD. I was unaware you can get them done yourself, so thanks for the suggestion.

Girlie, I do have a feeler out for a new LLMD who apparently figured out a way to bill insurance! But while waiting to hear back, I began pondering the self treatment route lol. If I self treat, it will be all herbs, probably Cowden or something similar. I'm not having results with the antibiotics my LLMD had me on right now anyway.

Thank you both!

Any others who self treat and are succeeding?
DX Borrelia, Babesia, Bartonella and Ehrlichia June 2017
Symptoms since at least 2007
Started treatment June 2017
Antitox ll CNS PNS Artemisinin A BART A BAB Biaxin, Chlorella, Liposomal Glutathione Magnesium Omnicef Prothrivers Wellbrain, Tindazole, Tranquility, Uplift, Fish Oil, B Vitamins, Vitamin D, gluten free, sugar free, dairy free lemon water detox tea detox baths coffee enemas
30%-60%

Szabo246
Regular Member


Date Joined Sep 2017
Total Posts : 484
   Posted 5/11/2018 8:19 PM (GMT -6)   
I am seeing a lyme doc in all honestly I’m not sure why sometimes, I tell him which herbs I’m taking and what I may have added in etc and he usually just says, yes just keep doing what your doing, cha ching!! Charges me for that advice.

He agrees that I should continue on the herbs as opposed to pharmaceutical antibiotics, maybe I would feel I get more out of him if I was on the pharma stuff.

I feel like I’m self treating but with his ok in the background. I’ve even started to get my blood work done through gp, just like to have him lingering in the background. He also does 15 min phone consults so maybe I can opt for that when I feel there’s not much new to share.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 5/11/2018 8:36 PM (GMT -6)   
I did the first 4 months with a LLMD and then I went on my own - except I did get the help of local herbalists and all of Buhner's books.

Donjr
Regular Member


Date Joined Apr 2018
Total Posts : 88
   Posted 5/11/2018 9:09 PM (GMT -6)   
Self treating, using doxy and garlic adding laurincidin Monday. Was real bad and my insurance stopped paying for my rosacea medicine so I aske the derm to give me doxy hycalate 100 for a year so that is how I have doxy. Found where a microbiologist treated himself and family with only garlic and doxy and is free after having it ten yrs. so I started it too and wow feeling better everyday. Been sick for 7 yrs knew I had it but Arkansas no one believes it exist. Girlie sent me llmd list of a few but I decided to try this first. Eat radishes for detox when I get bad herxing and going to add horseradish since I ate some on wife’s sandwich and I herded terribly, looked it up and it is a great antibiotic and biofilm buster kills cyst too. We forget the old way of doing stuff way too much. The biologist says one pill works cause after a few hrs they change their form and doxy doesn’t nothing that’s why the garlic. He said only raw and that is what I am doing. I am pulsing too 3 on doxy and one off then on again and I think it helps cause I herxing every time I start it again. But on second day on nothing till I go off and on again. The brain fog is getting better too so the B.B. theory of 100mg not working is a myth my opinion. If it is in the blood it goes to brain, doxy dose does not double it stays steady for 18 hrs even if you take two read the studies on drugs . Com. Maybe the garlic is the B.B. fixer though I do not know. The biologist said he studied it and I trust him so far because it is helping me. I drink kefir but I do think I am allergic I get real flush in face and itch and can not satisfy the itch seems deep in shoulders and my nose runs when I drink it. Do 6 oz a day for candida but garlic kills it too. Hope all of us find our health again and thanks to everyone for the advice been watching since 2011 but recently talking.

ArtAngel
Regular Member


Date Joined Mar 2016
Total Posts : 321
   Posted 5/11/2018 11:10 PM (GMT -6)   
I have been self treating for several years. I got allergic to everything so there really wasn't a Doctor that would take me on. I am in Australia where they don't even believe you can get lyme here so it took me 19 years and a kinesiologist to get a lyme diagnosis.
I do bioresonance tests with my naturopath to see what my primary issues are they can pick up toxicity,
organs under stress, infections of every kind, they can name them and tell you where they are in the body, It picked up conditions like gall bladder insufficiency, sugar imbalances, allergies, nutritional deficiencies.....They seem to miss adrenal issues which I am sure I have. So it isn't perfect science but it is a better analysis than I got with a specialist and it only costs as much as a naturopathic appointment.
I buy from iHerb, I rife and use herbs I can take and so far with some experimentation I have found some my allergies have gone. Things are getting better.

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 288
   Posted 5/12/2018 12:19 AM (GMT -6)   
I’ve been self treating since the beginning (10 months now) and I’ve found it has worked well for me, I feel like I’ve made good progress overall although I still have symptoms to resolve and I’m working on figuring them out. I have a naturopath who is not lyme literate that I’ve consulted twice just to get general supportive health advice and to answer some questions when I changed potency on my herbs. Before I started treatment my doctor had already run all the standard tests so I knew I was going into treatment with no other health issues. It would be nice to have a bit more medical support as I wouldn’t mind getting some blood tests done at times but I’m fine with out for now.

For me at least, I feel like I know my own symptoms, responses, etc better than a doctor who may not have the time to listen closely. I’m following Buhner’s protocols with some modifications and I’ve enjoyed learning everything I can about the herbs.
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 256
   Posted 5/12/2018 3:46 AM (GMT -6)   
I am self-treating. Main 2 sx are vertigo and fatigue. But i feel better than 5 yrs ago.
Taking 2x/day:
(~1 tsp each) Cats Claw, Japanese Knotweed, Andrographis, Houttunia. ACV
Swish in mouth with Coconut oil once in AM
Pills 2x/day: Mimosa Pudica, 'Diet Detox' pill,  Oil of Oregano, 
Supplements 1x/day at night:
D3, C, Iron, Niacin, E, Lions Mane, Calcium, Potassium, Collagen, Fish oil, "multivit/mineral 50+"

Diet:
Chicken, Salmon, Bass
Broccoli
Cauliflower
Yam
Lettuce
Spinach leaves
Kale leaves
Radishes
Blueberries
Walnuts
Pumpkin seeds
Feta cheese
Avacado oil dressing
Garden of Life Organic Meal
Shredded Coconut
Almonds
Cashews
Clementine
Avacado
Granny smith apple
Almond butter
Green tea
Almond milk
Apple cider vinegar
Water
Tried abx and iv abx for 2 yrs, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Andrographis, Cats Claw, Oil of Oregano
Sx Aug '13-
Extreme fatigue, dizziness, head pressure, 1 seizure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, depression, panic attacks

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4429
   Posted 5/12/2018 8:47 AM (GMT -6)   
Hi Runninheid,

I followed Dr. Jernigan's "healing at home" protocol from his first book "Beating Lyme Disease" and followed his instructions which in turn healed me without any remaining symptoms. And that was over 12 years ago.

I don't know if that is considered self-treating since I did follow a doctor's instructions (even though they were from a book). I just ordered the remedies as well as followed the instructions in his book for detoxing, internal cleanses, coffee enemas, etc.

When I did have questions I called up the Hansa Center (where I ordered the remedies) and back then they answered my questions. I don't know if they do that anymore.

Follow your gut instincts! If you want to try an herbal protocol do your research, ask questions, and just remember that you can always go back to antibiotics!! They are not going anywhere...

Denise smile
12 years well ~ used Dr. Jernigan's protocol from his book about Biological Medicine (used Borrelogen, Microbojen and Neuro-Antitox).

I still detox even though healed and drink Green Vibrance. I come back to help others for others helped me when I was sick. Pay it forward! smile

http://javuviews.wordpress.com/2013/04/24/how-i-became-better-from-chronic-lyme

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32695
   Posted 5/12/2018 10:43 AM (GMT -6)   
Deejavu said...
Hi Runninheid,

I followed Dr. Jernigan's "healing at home" protocol from his first book "Beating Lyme Disease" and followed his instructions which in turn healed me without any remaining symptoms. And that was over 12 years ago.

I don't know if that is considered self-treating since I did follow a doctor's instructions (even though they were from a book). I just ordered the remedies as well as followed the instructions in his book for detoxing, internal cleanses, coffee enemas, etc.

When I did have questions I called up the Hansa Center (where I ordered the remedies) and back then they answered my questions. I don't know if they do that anymore.

Follow your gut instincts! If you want to try an herbal protocol do your research, ask questions, and just remember that you can always go back to antibiotics!! They are not going anywhere...

Denise smile


Yes - definitely qualifies as self treatment.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 299
   Posted 5/12/2018 9:45 PM (GMT -6)   
I self treated with Buhners, and then skipped the LLMD and have been treating with a homeopath for much less money and great success

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1246
   Posted 5/13/2018 11:10 AM (GMT -6)   
Like it or not we are all self treating. You pay your doc he doesn't pay you.
Use them as a resource and some may be great at pone thing and not another.
For example-my St. Louis doc is great at dental and parasites-I and many think the best in the world. Is that enough-doesn't seem to be so off to a stem cell doc. My point-it may take more than one doc.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4880
   Posted 5/13/2018 12:12 PM (GMT -6)   
Yep we all need to self treat some of this, or never get well in addition to going bankrupt.

I mention self treating certain body systems on other forums here and almost get ganged up and booted off or am deleted by the average 80% people who fall for "conventional medicine is always right" ideology. We are wiser than that !! "Learn or die".
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 288
   Posted 5/13/2018 12:21 PM (GMT -6)   
I think that’s one of the things I like about this forum astroman. That healthy combination of skepticism, knowledge, and spunk that everyone has even as we all take it in subtly different directions. smile
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4880
   Posted 5/13/2018 12:24 PM (GMT -6)   
We are as a collective group (not just this forum) far more wiser in choices than the average sick person. Far more. This blows my mind how blindfolded the average public is on all health issues. They fell for the fda/big pharma pill.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 288
   Posted 5/13/2018 12:38 PM (GMT -6)   
I know, and for this I am grateful every day. I simply can’t imagine what it is like to be sick and feel that it is out of my hands to improve my health in some small way.
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4880
   Posted 5/13/2018 12:50 PM (GMT -6)   
College educated people too- who have just become lazy thinkers and fell for the pill. I am a natural problem solver, but thinking that way is not some impossible task, no "genius" required.

Ranting again aren't I? (ranting for all of us)

There is something to be said about lyme "vets/survivors" ect. Survival instinct in not in the general public apparently.

I'll try to stop now.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in Jan 2016. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

ChickenArise
Veteran Member


Date Joined Nov 2015
Total Posts : 1510
   Posted 5/13/2018 1:47 PM (GMT -6)   
Self treating. I used natural and allopathic medicine including antifungals, antihelmintics, and antibiotics obtained from India as well as some meant for animals which I found to be just fine. Keeping a dated health log of symptoms and responses to medicines was of paramount importance to succeeding.

I am off of the Rx's now (except Xanax and sometimes Ambien) but still use naturals and recently began daily ozone therapy. The ozone generator I bought works great and cant beat the price.

I have learned so much since joining this forum back in 2014. I dont know how I would have done it without everyone here to give me perspective, support, insight, and keeping me from making bad choices.

Not every decision was perfect but I was able to determine if I should discontinue something by journaling my bodys responses and learning contraindications as well as major and minor side effects of each of the many medicines used. In hindsight I wish I put more space between adding new medicines so I could be certain which one was responsible for what, but I have no regrets about what I did.

I cant say I recommend the average person do the same. Guidance is important but I had all of you wonderful forum members to help me evaluate the speed bumps. But there were times where I had to trust my intuition completely while having doubts and fears in the back of my mind. This can be a difficult combination to navigate.

I also had the luxury of time to research on pub med and other journals and would spend several hours a day doing so. I looked up every word I didnt know and learned them. The brain fog was so intense in the beginning I dont know how I was able to retain important information. I believe I also had help from an etheric realm guiding me and injecting ideas and intuition, God if you will.

I am 90% better with a persistent remaining 10% of symptoms, but am far better off. I am optimistic about my future.

2014 Mold Sick,2015 Clinical Lyme and co.,2016 Morgellons,2017 Remission
YT: ClintFromNYtoVA2
Twitter: @ClintFromNYtoVA
updated 21apr18 Blog: www.fascinatingtimetobealive.blogspot.com/
" The path to disappointment is paved with expectations "

Post Edited (ChickenArise) : 5/13/2018 2:01:35 PM (GMT-6)


astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4880
   Posted 5/13/2018 2:30 PM (GMT -6)   
Takes a lot of time, thats for sure. I'd say I spent as much as 25 hrs a week online researching this and all thats related to it.

ChickenArise- what ozone generator did you get? I'm thinking you had posts on this.

Self treating with Actual ABX is not for the common person. Sups, herbs- thats diff.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 5/13/2018 5:02 PM (GMT -6)   
Runninheid - "Just wondering who all is self treating, and if you feel successful?"

I am self-treating with Buhner's protocols. I'm in my 11th month. I do not feel successful. I am very sensitive and have multiple issues - some known, some unknown. Ongoing chronic stress has likely influenced my slow progress. I don't feel like it's a failure. I just expected it to be easier, smoother, more linear, less herxing/flares. I expected to have the kind of response sandyfeet has had. I haven't.

I do consult with an ILADS trained doctor who treats mainly with antibiotics (which I am not using). She runs tests and has done a lot that I asked for. She's made suggestions of supplements, what to focus on. Some helped. Some didn't. I don't take doctors' suggestions as orders. I consider their suggestions and implement how/when I see fit. Can't say if that is to my betterment or detriment.

The reason is I am very sensitive, and I often have different (often negative) responses to treatment than what doctors expect. I feel like none of my doctors have dug deep enough and looked at the whole picture and really tested for a lot of things. I've had very few alternative tests that others on this forum have had. While the doctors mention various tests, they haven't ordered many of them. I've had to ask for almost everything I've gotten and push and advocate, even with the alternative doctors I've seen. I feel like no one is really looking to accurately and efficiently identify and resolve my problems but me. And I'm the one paying for it.

The other issue with pay-out-of-pocket doctors is financial. If you contact them to help troubleshoot a problem or report adverse effects, it's probably going to cost you. And they are probably just going to tell you to take another expensive supplement that may/may not work.

Probably my BIGGEST pet peeve with doctors is they make assumptions about everything, including what I mean when I tell them something. They don't ask clarifying questions. They listen briefly, assume they understand what I'm telling them, and quickly make recommendations based on their half-accurate assumptions, often wasting my time and money. I find that immensely frustrating. I'm a detail oriented person. I would rather someone take longer on the front end to listen, ask, evaluate, test, THINK about what they are assuming and why, and then come up with a plan and review it with me. (I'm sure they think they actually do this.) Instead, they come up with a plan on the spot based on limited information and then alter it if I complain later about issues with it, or assume it's working (without ever asking if I even followed the plan) if I say nothing between then and the next appointment. At least this is my limited experience.

In spite of initial 2 hour appointments with the functional MD I first saw and now the LLDO I'm seeing, I did not feel like those lengthy appointments were well utilized. I have been sorely disappointed in the quality of medical care I've gotten, but have come to expect that is all I'll get. I hear others on this forum speak highly of their doctors. I don't know if their doctors are that much better, or if the patients have lower expectations/higher trust level in general. I have high expectations and low trust level. The recent reports I've read of Rare Squirrel and ArtAngel sound like they have the kind of doctor I wish I had.

I have learned so much on my own that it is painfully clear to me that doctors don't know about everything I know about and do not share my opinions on lots of things. I've learned more on here and from personal experience than I have from any doctor. I am not a very science-minded person though, and doctors know far more than I do. Getting the right exchange of information seems to be the key, and I haven't found the key yet.

Sadly, the further I get along in this, the more difficult a patient I seem to be. I know enough to be dangerous as they say, but not enough to cure myself. I guess most of us here could say that.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 5/13/2018 5:05 PM (GMT -6)   
Gosh!! Sorry ya'll. I didn't mean to write a book. LOL

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4880
   Posted 5/13/2018 9:06 PM (GMT -6)   
WBF-
WalkingbyFaith said...
Runninheid - "

Probably my BIGGEST pet peeve with doctors is they make assumptions about everything, including what I mean when I tell them something. They don't ask clarifying questions. They listen briefly, assume they understand what I'm telling them, and quickly make recommendations based on their half-accurate assumptions, often wasting my time and money. I find that immensely frustrating. I'm a detail oriented person.

.


Yep, my pet peeve........LLMDs still assuming (guessing). I certainly understand your frustrations.

Since I also take note of details (my job also requires this), I expect health professions to be detail oriented too, and they should be!! Some LLMDs dont know anymore than what can be found online. I expect more knowledge to be gained from hands on experience, guess thats not automatic.

Oh...........nice book.......

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 288
   Posted 5/14/2018 2:45 AM (GMT -6)   
WalkingByFaith, I couldn't agree more with everything you've said! My biggest problem with almost all of the doctors that I've ever worked with is that they already have their own favourite theories and often try to fit your symptoms into that mould rather than listen attentively. Repeatedly I've had doctors stop me part way through because I've already ticked the boxes they were looking for. I've also found that they rarely think holistically - if they cause other symptoms or damage while fixing the specific issue you've brought them that's ok because it's out of their range of concern, they've done what they were asked to do and anything else is follow up for another appointment or another doctor.

As a number of people have mentioned here you need to be a certain type of person if you're going to treat on your own - detail oriented, enjoy research, and take responsibility for your choices. Most of us have certain issues that block our healing and uncovering what those are takes a fair amount of research, trial and error and careful listening to our bodies and intuition.

And yes, astroman, I can't tell you how many times I've had a doctor essentially say 'let me google that for you'. Sigh.
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017
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