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Posted 12/26/2017 5:34 PM (GMT -5)
Well, I'm officially one of those people who only visit the forum when I need help!
In short (as I can anyway): I had a tick bite this past August with a bullseye rash. Started 400 mg/day Doxy 1 week later. I suspected Bart and Babs the whole time but the LLMD I traveled from Missouri to New York to see didn't want to start treating those yet. Claimed Doxy was probably all I was going to need. Did a blood test and showed one band buuuut didn't tell me which (I know I should know this but this doctor proved to be very difficult) 1 month later I added Buhner's core protocol. I went to Chicago 3 months after starting Doxy to see a LLND and she did a Zyto scan. All three Bs showed up. The Bartonella and Babesia was on the very low end of the spectrum, so low she typically doesn't even treat but did anyway (DesBio Homeopathics). And Even the Borrelia was pretty low. Not that I completely trust the accuracy of the Zyto scan, but hey, it's something. LLMD in New York decided to treat me for Babs too, so he gave me 1 month Malarone. I added Sida to my daily herbs at that time. So I did a homeopathic detox kit, Candidia, Bartonella for a month (probably still should be doing that, but I can't get a hold of that doctor EITHER), still doing Borellia/Babesia and Silver, Malarone for that same month, and took Doxy for four months. I'm still taking all the herbs and trying to adjust accordingly. Oh, I also drink 15 drops each stevia and GSE in my water every day (won't hurt) .
And here I am. I didn't choose to stop the Doxy or Malarone. I couldn't afford to fly and see the doctor with holiday flight prices, so he dropped me. I begged for another few weeks (we're talking $800 for my plane ticket before Christmas and then down to $260 after) and I would have been able to make it, but he just dropped all contact with me...even AFTER telling me on the phone our last phone session that it wouldn't be a problem. Guess he changed his mind... My symptoms were pretty much gone for a week (except no sleep) until I started treating the Babesia. Now I'm overwhelmed and confused, like out of body type experience. I get dizzy, my neck is stiff many days (like today I can't turn my head) some headaches are back, I have limb numbness occasionally, shaky... I never got to be put in "remission" and I'm kind of scared of doing this without the pharmaceuticals even though I know it can be done.
I'm so, so very low right now and I don't know what I should be doing. I enter the grocery store and completely turn off. I'm scared to drive right now. I'm trying to take an Epsom salt bath every day, dry brush, and drink lots of lemon water. I also take 2 activated charcoals at bedtime. I don't feel like me and I've got two little kids (almost 1 and almost 4) that are suffering from lack of momness.
I started looking up the Babesia protocol in Buhner's book, but I don't know if I can afford it... and stomach that may I add. I'm just floating by and I can't figure any of this out myself.
Posted 12/26/2017 5:43 PM (GMT -5)
hopelessinmo - I'm shocked that your LLMD dropped you...he could have given you a couple weeks extension.

You definitely need more than one month of malarone to treat Babesia.

Are you going to find another LLMD?
You need to keep treatment going.

If you don't want to see a LLMD, then maybe add in one or two of Buhner's Babesia herbs...Cryptolepis and Sida Acuta...or Artemisinin.
Even if you can't afford the full protocol...you could pick some of the herbs?
Posted 12/26/2017 5:46 PM (GMT -5)
Oh gosh hopelessinmo, I am so very sorry. I was just saying in another thread how hard it is for Moms with children that have lyme. I don't know how you do it. I was a mess and it was just me and hubby.

First off, you have to treat. This is not an illness that goes away with time. It just gets progressively worse. You can't let it go any further. You must treat.

I have never done or seen a cost effective study on which treatment is the least expensive. I did herbal tinctures. I do know that it would have been less expensive if I had of made those by myself. I just didn't have the brain power to do that at the time. I bought tinctures online.

There are many methods to treat lyme. My best advice is to make a pro and con list and examine all the different methods and see which wins your vote.

Never Give Up! Do not let it ever be an option. <3
Posted 12/26/2017 6:24 PM (GMT -5)
Hey Girlie, yeah, I'm beyond disappointed... I went broke just to make the trip and he would only extend me FOUR days. I've been actively looking for another doctor but hearing mixed things about every single one. I did add Sida to the mix and have been taking it about a month, but I feel like it's not enough. I've had obvious Babesia days where I couldn't breathe and was soaking through my clothes, but then other days I'm just in la la land. No normal days since my first dose of Malarone.
Thanks, PeteZa, it's been really rough. My baby was just 6 months old too when I got my bite.. I've been ordering the tinctures and I'm in the same place as you, I don't think I am with it enough to make my own. I know it'd be cheaper, so I'm at least looking into it.
I know I need to treat until symptoms are gone.. if they ever leave anyway.. and then go from there. I'm just so out of it, any kind of decision making, or problem solving skills seem impossible for me.
I feel like I'm in a constant ... "I dunno" state. Will herbals be enough? How do I know I'm taking the right dosage? Has mixing the homeopathics with herbs work for anyone? Is THAT enough??
Sigh
Posted 12/26/2017 6:35 PM (GMT -5)
Hi hopelessinmo,

I believe we spoke before, you were seeing Dr C. correct?

If so I understand how you feel.

He had me on only doxy for four months also, that can cause some of the bacteria to go into cyst form. So you maybe still need to be treating Lyme too.

Sometimes when we treat another infection, like Babesia and knock some of that down, other co infection symptoms can come out stronger.


How much Sida and how long have you been taking it? some times Sida can increase symptoms for some people so you would just have to back down to a smaller dose until you don't have those symptoms.

Is the shakiness like jittery feeling or internal vibration type feeling? I get that if I take to much of Sida.
But it is such a good herbal I just had to learn how to adjust the dosage for me.


The Stevia and GSE while may be helpful during treatment, but right now may be adding to increase in symptoms from busting things up.

Using more than one type of binder is helpful too. I alternate between Act. charcoal and Zeolite.

I take 5 capsules of ATC(280 mg a cap.) and when I use the zeolite I take a tablespoon and mix with 1/2 glass of water.

I would also start a new post here and on Lyme net searching for an llmd or Naturopath in your area that has good recommendations and/or takes insurance.

Well take care and I hope you get some help and relief soon, Jo
Posted 12/26/2017 6:37 PM (GMT -5)
Hopelessinmo, I am healed so if I can do it, you can too.

I really was a mess. I bought Buhner's book (Healing Lyme, 2nd Ed.) and could not get past 4 pages. I could not read or comprehend. One of the old moderators on here told me to go to Chapter 8 and just get started on the core protocol. So, that's what I did.

It took time, money and patience and one heck of a lot of listening to my body, but I finally healed or I guess they say I am in remission.

I did it without the expense of a doctor or the travel to doctors. It wasn't easy or fast, but it is totally doable.
Posted 12/27/2017 10:18 AM (GMT -5)
Hi there might be resources that can help, I'm not sure but when I have a chance after work tonight I will take a look.

I think in our new to Lyme thread there might be some resources also try ilads.org, Global Lyme alliance

Search for medical foundations that may help with cots of treatment.


Take care, Jo
Posted 12/27/2017 4:25 PM (GMT -5)
Hi Jo, yes you are correct, I was seeing Dr C.

I have emailed ilads a few times and there's not anyone listed in my state or surrounding. Then I just asked for 1000 miles of me and they stopped mailing me back sad I haven't tried global lyme alliance though, I'll look into it.

I've been on chapter 8 of Buhners book and I write down what I need and then i forget to add the why, so when I'm referencing herbal "recommendations" from others, I don't remember which was what and then i get overwhelmed. I need to just take baby steps, I know.

After having a bad experience with every doctor I've been in contact with, seeing one again feels stupid. I wish I was with it enough to trust my own judgement in figuring this all out.

Oh, I've been taking 1/4 tsp of Sida 3 times a day, but went down to about half that today. Hopefully it'll help.

I didn't consider taking two binders and alternating them, thanks for that tidbit as well.

This brain fog is really wearing me down, I sound like a blubbering blockhead when I try to speak!
Posted 12/27/2017 4:33 PM (GMT -5)
Hopeless - I don't remember - have you emailed me about a LLMD in Mo?

I don't know if I do have many or any options - I'm not at my computer desk right now - but if you haven't already emailed me before - I can check if I have any options listed .
Posted 12/27/2017 4:50 PM (GMT -5)
Hopelessinmo, I so can relate to you. I could not read anything when I had lyme. I just could not compute it.

What I did was the Buhner core protocol from his Healing Lyme, 2nd Ed book. And because I could not think, I started with the top of the list and worked down. Buhner numbered them so I figured maybe that is how he intended me to do it. Why else number them? He could of just bullet-ed them, right?

First I had to do like Buhner suggested and took my main horrible symptom and address it. That was my heart. I had palps and flutters. So I started with Motherwort and Hawthorn. Then on to his core protocol I went.

1. Protecting endothelial structures (pg 214) - Polygonum cuspidatum (Hu Zhang or Japanese Knotweed)

2. Cytokine remodulation (pg 214) - Salvia miltiorrhiza (Red Sage or pinyin: dānshēn) and Scutellaria baicalensis (Skullcap or Huang Qin)

3. Collagen protection (pg 214) - Great lakes gelatin, Vit C, Selenium, etc - My personal recommendation for collagen is Protein Essentials Hydrolyzed Collagen.

4. Immune remodulation (pg 215) - Unicaria tomentosa (Cat's Claw), Cordyceps mycelium (a mushroom), withania somnifera (ashwagandha), Eleutherococcus senticosus, Glycyrrhiza (licorice)

5. Antispirochetal (pg 215) - Andrographis

I hope this is helpful. I healed. It took some time and one heck of a lot of patience, but I made it.

I also did Beyond Balance Tox Ease GL and MC-BB-1 and then MC-BB-2 while I was taking the Buhner herbs.
Posted 12/27/2017 5:09 PM (GMT -5)
Yes Girlie, you did give me your list and i had called everyone. I had a really bad experience with a doctor in Chicago. Said I was too far away for him to treat me because he likes having a close relationship with his patients. And he was the only one I read really good things about. I should probably share his name with you privately...
Thanks PeetZa, I need to spend more time with the books that's for sure. Did you get better all naturally this way or where there some other things you were doing?
Posted 12/27/2017 5:17 PM (GMT -5)
Hopelessinmo, I did just as I said above. BUT... I was the detoxing queen. I ate super healthy and did one heck of a lot of detoxing DAILY.

I did vitamins and supplements.

When I first was diagnosed, I did antibiotics and I was so sick. My stomach could not handle them, even for 3 weeks. I was on Biaxin and Ceftin. I tried doing the probiotics but the antibiotics still made me so nauseous.

Besides healing my stomach with all kinds of good things, especially bone broth. I did use a lot of garlic. I knew I had to get my gut healthy in order to heal.

I also had to sleep. So when my eyes were slowly lowering, I took a nap. Sometimes I would sleep more during the 24 hours than I was awake.

Lots of water to flush out anything I was killing. Sometimes I did apple cider vinegar splash in my water, sometimes lemon and sometimes I drank a tablespoon of apple cider vinegar plain.

I did it this way and without a doctor. I just could not find a doctor that could keep up with me and my ideas. Buhner is written so you can do it on your own. However, without the aid of the moderator CD here, I could not have made it. She was my guru. I am paying it forward because of how she helped me.
Posted 12/27/2017 5:18 PM (GMT -5)
Hi I found this website that offers places to get financial help for those with Lyme.

Something to check out.

/lymelightfoundation.org/about-lyme/resources-adults-lyme-disease/




Also shop around for buying tinctures/herbals, I usually use Woodland essence and would highly recommend them, but I recently used tinctures from Sage Woman herbals and they were much less expensive .

Since I use about 16 tinctures , buying them for much less per bottle adds up to enough to buy another 2 oz tincture. Maybe doesn't seem like much but over time treating it makes a difference.

Good post from PeteZa. She is right at the beginning and when we are so ill ,its overwhelming to figure the protocols out. We understand and you will be ok, it just takes a little time.

Don't be afraid to ask any questions you have, that's what the forum is for.

We are with you through all of this, take care, Jo

Post Edited (goshawk) : 12/27/2017 3:23:19 PM (GMT-7)

Posted 12/27/2017 5:20 PM (GMT -5)
ok for some reason the https:// isnt showing up in front of that link. sorry I tried a few times.

But if you google that it should come up.

Post Edited (goshawk) : 12/27/2017 3:24:48 PM (GMT-7)

Posted 12/27/2017 5:23 PM (GMT -5)
Awesome site goshawk.

Another thing that many people have done is make their own tinctures. That is really less expensive.

I don't suggest doing this until you have treated for awhile. First, it is always better to buy the tinctures in small bottles to "try them out." You don't want to find out you can't take it and have a 4 ounce bottle you can't use.
Posted 12/30/2017 4:28 PM (GMT -5)
Thanks for the link, Jo, hopefully I can get somewhere with it.

I've been detoxing every day. Lemon water, dry brushing, Epsom salt baths. I also do a shot of apple cider vinegar every day and... I was told the green machine naked juice I drink with my tinctures was good with detoxing also. I don't know if that's enough though... I've eaten organic and very well since I was pregnant with my oldest who is about to be 4. Now sleep? I never get sleep. Even if my mind settles at night, my body won't allow it. On a good night, I might get 6 hours, always broken because of kiddos or my snoring husband, maybe I have to pee OR a bug down the road sneezes. I'm a crazy light sleeper.

Oh and another thanks for the reminder to get a small bottle of the new tinctures to try out. My last order was the 8 oz bottles since I've already gotten used to the core protocol, and I probably would have just gotten 8 oz of the next ones I need out of habit.

I plan on making my own as soon as I can comprehend what's going on. It does sound super easy and quite a bit more cost effective. If I'm going to be having to take this stuff for a long time, it'll be a better route for me.

I guess since I was on medication immediately after bite and started treating from all angles, I wouldn't have to continue treatment indefinitely... and that's how it's starting to feel... I've gotten WAY more direction and advice from this message board than any of the doctors or offices I've spoken with. I cannot believe how cold people can be.

Thanks
Posted 12/30/2017 6:49 PM (GMT -5)
Hi hopelessinmo, I don't have a lot of advice but I just wanted to also say I'm sorry you are going through this! My youngest is 6 and that is hard enough I can't imagine having little ones like you! But you can get through this! Hang in there...this is actually what I'm trying to tell myself too!!
Posted 12/30/2017 9:14 PM (GMT -5)
Tonyaraven, I hope your optimism is contagious!
Posted 12/31/2017 8:35 AM (GMT -5)
I'm sorry you are going through this. Where do you live? We saw Dr C and it was a total waste of a lot of $$. Who did you see in Chicago with zyto testing? You can private message me and I can give you the lie down on the Chicago LLMDs. There aren't many. We see an incredibly compassionate and caring LLMD in the city who also takes insurance!! Shocking, right?!?! She is fantastic mostly because she actually cares. I also see Dr H in NY and the two of them collaborate.
Posted 12/31/2017 12:24 PM (GMT -5)
Evanston1, I don't see where I can message you. I would love to hear about your luck. I'm a bit south of St Louis.
Posted 12/31/2017 4:07 PM (GMT -5)
Isn't there a mail icon you can click on by my screen name?
Posted 1/1/2018 9:48 AM (GMT -5)
Yes, the icon is there but it's not in color
Posted 1/1/2018 12:09 PM (GMT -5)
In order to receive emails from ONLY members that are registered here, you have to enable your email in the My Profile section. Then go to Edit Profile, bull's eye the one saying enable and make sure you click Submit at the bottom of the page.
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