Topic: Ready to start, but scared. Need advice for self treatment.
Jordana
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posted
The LLMD hasn't called me back in ten days and that makes me think I've been fired.
In the meantime -- actually over months as all this data has been trickling in, I am still pretty sure I have Lyme.
So no one is going to help me; I'm going to have to start treating myself.
I have all the Buhner herbs. I have all the Cowden herbs. I have 90 100 mg minocycline and enough tindamax. I also ordered coconut activated charcoal and I have it here. Also Alka Seltzer Gold, and Burbur and Pinella.
I think I probably need something for yeast but it seems like Lauricidin should work on that at least a little.
So the thing is, I tried this once before. I have a very terrifying symptom that's cropped up twice while taking both doxy and mino -- it's a specific nerve issue where my nerves start to feel like they're popping in my skin.
I have no idea what it means -- I don't know if I'm demyelinating or if it's just the bugs dying in my nerve fibers but it scares the hell out of me.
I know I'm about to get really sick, but I don't think I have an alternative here.
First question: Can minocycline cause nerve damage on its own -- in other words am I hurting myself taking this stuff?
Second: How do I take activated charcoal? How much and what interval? 2x a day or 3x a day? At night or in the morning?
Is there an herb I should take for nerve support?I have them all, I can just add it to my takuna if there's something that helps.
Thank you!
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I put a small scoop of the activated charcoal in a glass of water and drink it down, away from meals and supplements. You could probably do it twice a day. Everything in moderation.
Whatever you decide to do, I suggest you start very small, to see if you tolerate that substance. I would personally be testing anything to see if I respond well or badly, then I would know more about that remedy before I amp up.
That means I take a very small piece of a pill, or I open a capsule and take a very small amount of what's inside of it.
I like to test one substance at a time to see if I can tell whether it's doing anything noticeable.
Later on, I amp up slowly in quantity on anything that I have not had a bad reaction to.
And I have done most of my treatment like this. And I've put myself on remedies, so I can relate to what you're saying here.
And it helps to have a doctor to talk to!! So hopefully you can make that connection.
What the doctor will also do is bloodtest you to see what your personal chemistry is like, and tell you what to supplement.
Have you already seen this doctor or is this a new doctor? Either way, you can recontact the office to ask for some clarity about what's going on. Maybe they're away for the holidays...
Posts: 13116 | From San Francisco | Registered: May 2006
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Jordana
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posted
Thanks, good advice.
I went to see this guy. He ordered a bunch of tests and one of them came back Scary. When I emailed to ask him about it he never answered me along with never answering me about the several other questions I had.
I'm a little horrified now that a doctor ordered tests for me that I offered a vein to, paid and got the results for -- and has now disappeared without any explanation of the results.
At first I thought, sure, the holidays, the guy has a life. But ten days is a LONG time to wait for an email reply. In my reality it's a couple of dog years.
Guess it's time to find another doctor...
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
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J said... "But ten days is a LONG time to wait for an email reply."
Seven of those ten days were holiday or weekend days.
Rather than email, try calling again. Most Lyme treating doctors want to discuss tests in their office during an appointment, not by email or phone. Some have strict rules about discussing anything unless you are there.
Jordana
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Member # 45305
posted
Their policy is that email is fine as long as patients realize he will sometimes charge for a reply. I had exchanged several emails with him previous to this Dead Zone, and he answered promptly up until The Scary Number.
My next appointment is in March.
I did call today ( and last Thursday I think, so I'm not blowing up their phone) and had to leave a message. I didn't even get a call back from a practitioner, nurse or receptionist.
Nothing.
So weird.
Posts: 2057 | From Florida | Registered: Feb 2015
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My LLMD pretty much dumped me when the nurse assistant saw Morgellons lesions on my forearms. (I just thought they were mosquito bites that did not heal at the time.) LLMDs and their staffs are just human beings-- and Morgellons scares them.
I pretty much discovered (about 5 years ago through trial and error) that a combo of MSM and Artemisinin dries up the lesions within a couple of days (but does not cure the condition permanently)
I should probably should get the Nobel prize for this discovery--- but since I am "delusional"---LOL I wont be getting that prize anytime soon!!! Of course I still have Lyme, too, and probably Bartonella.
I found this video by Dr. H (who has treated many thousands of Lyme patients) on his different protocols. Its very comforting to know that he is insatiably curious about getting results.. He is extremely knowledgeable.
On the video he has statistics on the Cowden protocol alone, and when it is combined with antibiotics. He shows that the Cowden core program is as effective as antibiotics,
based on his trials of roughly 80 patients. The only Cowden herb that he discovered was effective for Babesia was Enula, I believe.
One thing you might wish to investigate for detox is HMD for a month or two-- it is a combo of Chlorella, Cilantro and Chlorella Growth Factor (herbs that Klinghardt uses) --
and several scientific studies to show that this formula works well based on before and after tests of heavy metals. (Cilantro mobilizes, chlorella absorbs,and CGF boosts the process)
Im thinking of purchasing this product when I am done with my bottles of cilantro and chlorella.
Good luck with self treatment! I doubt minocycline will hurt you and will probably reduce your bacterial load-- but it probably wont break up biofilm and probably does not kill cysts.
The Cowden and Buhner herbs are not dangerous, and from what I have read, they address all three forms of Borrelia--- Motile, Round bodies(cysts) and Biofilm.
I did have to stop the Samento myself, though because I developed annoying palpitations-- after several months. It could have just been a bad interaction with coffee, though.
Also, I thought that TIndamax was less effective for me than Flagyl-- which resulted in crystal clear thinking after a few days of use. It was like a new pair of glasses..but you can't stay on this for 18 months. LOL
Nothing for me has led to a permanent cure--- but then again the Brorsons discovered that cysts are viable for 18 months--- so I would have had to stay on a cyst buster for 18 months-- not to mention a biofilm reduction program.
I think killing cysts is a key--because there are roughly 12 baby spirochetes in each cyst-- waiting to bust out and make you relapse as soon as you go off antibiotics.
Good luck!.
...........................................
(breaking up the post for easier reading for many here)
[ 01-06-2016, 01:57 AM: Message edited by: Robin123 ]
Posts: 696 | From New York | Registered: Aug 2006
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Jordana
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Thanks for all your help!
I just watched the H video. I kept thinking ahhhhhh crap, I don't want this...sigh. Baby spirochetes, bloody hell.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I think that's a long time to go between appts. Couldn't the doctor get you in sooner to discuss your results? Even put you on a cancellation list?
Posts: 13116 | From San Francisco | Registered: May 2006
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WPinVA
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I appreciate your reaction to the LLMD's non-responsiveness. But just because the first LLMD you tried didn't work out, that doesn't mean there's not another one out there who would be great.
It can take time in the beginning to find a good doctor who is a good fit. Many of us have cycled through until we got to the right one. It is a process. For me personally, first I saw a physician's assistant, and then when he was finally taking new patients, months later got to a great LLMD.
Personally, I would not have wanted to do this on my own without a LLMD. Some have to, of course, but it sounds like you have the resources to see a LLMD, so why not try to find another one?
Posts: 1737 | From Virginia | Registered: Aug 2011
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Jordana
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I know, you guys, thanks for your opinions and concern. I'm on the hunt again.
It's frustrating to read stories of people who've found their LLMD and listen to their abx combinations and so on.
I had to figure out on my own that I had Lyme and co despite tons of negative tests, force myself to go to regular doctor's offices until I realized they couldn't help me, and then finally I find someone who I think can help and he bails.
But I'm going to keep looking. It's just that in the meantime I can't stand to sit here untreated when I was pretty sure I had Lyme a year ago. Also now I'm pretty sure I have Bartonella, Babesia, Ehrlichia maybe.
When I read about how dangerous these things are I can't just sit here and do nothing while I wait for appointments and more tests. It's just ridiculous.
The only thing I'm trying to do now is the safest self-treatment I can muster without making it worse.
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
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So I just made an appointment with another LLMD for MAY 2!!
This is what I mean. Six months from now -- I can't not treat for another six months. I wouldn't even be able to fake an ear infection for that long to get enough abx.
I have 45 days of mino and I can start taking that. If I herx insanely then I guess I can go to the hospital. I'm not going to let these germy little bastards win.
Posts: 2057 | From Florida | Registered: Feb 2015
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momindeep
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Of course treatment right away would be optimal...but since that isn't possible you can still be successful in the meantime...and your plan sounds well thought out.
My daughter had Lyme for years and did not get treatment right away and she is well...my husband, I suspect, has had it for decades and we are just starting his journey. I am hopeful for him.
My point is, you have a plan, you are doing positive things and you are taking good care of yourself.
It will be okay and you have no reason to not expect a good outcome and that is the truth.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Jordana
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Oh my goodness, did I ever need to hear that today, thank you.
Posts: 2057 | From Florida | Registered: Feb 2015
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me
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Can you travel out of state to see a LLMD? If so, there is one who may be able to see you sooner.
Posts: 1431 | From USA | Registered: Mar 2015
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Jordana
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I suppose I could but I'd have no idea where to go.
Posts: 2057 | From Florida | Registered: Feb 2015
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TF
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There is a good lyme doctor in Maryland who could see you in probably a week or 2.
He is better than anybody in Florida. Let me know if you want the name and details like price, patient reports, etc.
After the first in person appointment, he will do phone or Skype appointments so you would only have to make the trip once every 3 months.
This is the doc "me" is seeing.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
PM sent for MD.
Posts: 8981 | From Illinois | Registered: May 2006
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Jordana
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Thanks, I'm going to call them tomorrow Posts: 2057 | From Florida | Registered: Feb 2015
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WPinVA
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Unfortunately, with LLMDs, the wait is a common problem. One thing you can do is to find a Lyme friendly integrative doctor who can see you in the interim.
Not a substitute for an LLMD, but someone who can hopefully get you started on some sort of treatment in the interim.
Is there a local Lyme support group? You could ask there.
Even before I got into see the LLMD's PA, I did this with an integrative doctor. She wrote me a script for doxy which was great because before that all I had was the 2 weeks from urgent care and that wasn't going to cut it!
Posts: 1737 | From Virginia | Registered: Aug 2011
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me
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Jordana, As TF said, I see the LLMD she sent you in a PM. She also graciously referred me to him (thanks, again TF)!!!
I am super pleased with him thus far, and like most of us, I've been to tons of docs, the majority of which have been disappointing at best. I highly recommend him.
Posts: 1431 | From USA | Registered: Mar 2015
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TF
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Jordana never asked me for the doctor's name so I haven't sent it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Jordana
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Thanks TF, someone else PM'd me the name.
Posts: 2057 | From Florida | Registered: Feb 2015
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Totally sympathise, I'm on a tiny income and in the UK where the NHS doesn't believe in Morgellons and I can't afford a private LLMD so I've been reading everything detailed I could find.
12,000 pages later (7 weeks of intensive non-stop reading) I've decided to take no herbs or antibiotics, to transition slowly onto a very carefully worked out supplement and detox protocol (a bit different from my current supplements but not hugely so - and I'm not currently detoxing), and to use the Spooky2.
According to Bryan Rossner, Rife machines + supplements that's what works best for most people, so we'll see.
Have you tried the Salt + C route? I tried the Salt + C route but I couldn't get past Day 1 as I kept responding to it very violently.
But I'm taking 5grams daily of C and huge quantities of enzymes and magnesium and that does seem to be helping. Plus whatever supplement I'm taking, I take it transdermally when possible and in whole-food derived form when there's no transdermal available.
Good luck with finding a good doctor and I hope you feel better soon :-)
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Oh my goodness, did I ever need to hear that today, thank you.
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