Discussion in 'Lyme Disease Archives' started by MIssAutumn, Jan 15, 2010.

  1. MIssAutumn

    MIssAutumn New Member

    I thought I'd answer here instead of hijacking greatgrans' post.
    I did have some of the symptoms after a year and yes, it is scary. In a way I am a bit better but I developed the burning sweats and chills from Babesia and the shooting jabbing pain in my head but that has gotten a bit better. It has done nerve damage and have all that you mentioned. A man in my church was a family doc until he contacted Lyme so he closed his practice and now treats people with Lyme all over the world, he doesn't charge but goes by donations. He has given me some ideas on treatment. You can do this with natural products, although he will prescribe abx for short term.
    After finding out about the compromised liver I fired my doctor :) and went on my own with some help doc at church. I quit taking everything but supplements for the digestive system for about 2 weeks. I then added Milk Thistle to help the liver. I also got an ionized foot bath. I had read a lot of pros an cons on them but my numbers have improved a little- one point lower- since using it. I figured I had to detox another way beside the liver or at least until I got rid of the heavy metal poisoning, and co infections. I also do dry brushing.
    this doctor told me about Teasel tincture and I tried it- one tiny drop- in a glass of water, but I herxed way too much so quit. I did the foot bath and took nanoparticle silver and now I'm able to start the Teasel tincture again. I'm on a no gluten, dairy, sugar low low carb diet and as organic as I can make it. I started taking Goldenseal and Echinacea 2x a day, plus Pectasol for the herxing and to pull out the heavy metals and those Babesia also taking honey. And trying a new concoction for sleep which so far seems to be helping. I do take a lot of supplements I'll list if you want. the sleep is 4 - 3 mg timed released Melatonin, 2- 500 Trytophan,3-4 Valarian, GABA 2-750 mg, Inositol, Seriphos and 1200mg powder magnesium.
    Sunday I will ask how you know if your herxing or getting worse. I know I had gotten worse with this old doctor, because before he started messing with supplements and not listening to me when I said I worse I was getting better or at least felt better! I have read, though, if you have Babesia it will take at lest 5 months to start feeling better since 4 months is the life span of the red blood cells
    I've heard too that all Lymies will feel worse before they get better but 2 people at church are getting better without the herxing. They did feel worse until they found treatments that work for them.
    If I can think of anything else I'll add it, it's getting late and I'm getting foggy headed

  2. MIssAutumn

    MIssAutumn New Member

    I also do a diet to keep the body PH balanced, I did a search and the ones that helped the most were sites for cirrhosis of the liver and HIV! but a lot of really good information on how to detox the body safely. I also am trying to do some walking since the Lyme bugs don't like the body temperature to be up and mine is really low, also eating foods that will raise the core temperature.
  3. herbqueen

    herbqueen New Member

    thank you MissAutumn-

    How long did it take for you to recover from you nightmare "herx"? Just curious --I'm so frightened right now I have some degen neuro disease ( I have optic neuritis as well.. vision loss...)and will not recover from this downward spiral I'm in since the flagyl/diflucan..... Ikeep telling myself I was functional 2 months ago (altough had bad fog and some neuro symptoms) I can get back there and can't degenerate that quickly. I'm seeing a naturopath/nurse practioner (first time this week) who has lyme herself. Since I am not sleeping... she wants to get me sleeping and prescribed a sleep drug.... still experimenting with that on 3rd night.. so far not working well. (Trazedone) I've not taken pharm in the past but right now nothing is working in terms of melatonin, herbs, etc. I have not tried a couple of things on your list so maybe I should add those to the mix if the Trazedone doesn't work. I hate taking it since I'm so chemically sensitive and taste the drug all day next day in my mouth. ButI know I HAVE to get sleeping again to recover out of this nightmare spot I'm in right now. I saw your sleep list.. I can't take valarian(acts as a stimulant for an dmany people). I think sleep is key for me. If I could sleep like a log I probably would not have this to begin with. I've always been a fussy sleeper-but nothing like I'm experience now during this downward spiral.

    The NP also wants me to do a detox kit and stop all my supplements-- she says I' totally toxic which I know I am and drinking Biehler broth every day.... plus salt baths. My body can't take heat right now.. I'm a mess. Trying to keep exercising but very difficult given how weak and shaky ,dizzy, jerky I am right now!

    Very kind of the doctor to retire and help!!!
  4. MIssAutumn

    MIssAutumn New Member

    I hate to say this but it's been a year since I went into my big flare/herx? who knows what it was but I'm just now- like 6 days ago- was able to weed one of my small gardens and take my new/old dog for a walk. I couldn't move for 3 days overdoing it but I didn't care. I think the thing that helped me the most was stopping everything but the supplements for the digestive tract and then doing the detox foot bath. Nothing else seems to have worked as well as the foot bath, now I'm able to take goldenseal and echinacea and I self tested for grape seed extract and tested a high positive for that then the teasel tincture. At church today one of the members has had Lyme for 9 years but most likely since she was little, she remembers the rashes and tick bites as a child, she had been doing the Rife machine and is 90% better and has a compromised liver, too. So that was great news. She also stopped everything - detoxed through the machine and now is just taking super green food and 2 other supplements but she never had trouble sleeping even with the over active brain activity. I was actually sleeping from 1 am to 6 am a while back and for the life of me I don't know what I was doing then except taking tryptophan. I know if we all could just get those 6-7 hours of sleep we would be so much better. Trazadone never worked for me, either. I didn't know that about Valarian, I'll have to stop them and see if the waking ever 2 hours stops. Don't know if I mentioned the Walmart sleep aid doxy something that really helps stop the brain activity but it sure works.
    It is hard to exercise, it's been 4 years since I've been able to do any kind of walking and nowhere near what I did before! but even as little as 10 mins helps. I know we feel as strong as melted butter someone wrote!
    I let the doctor who did the tests go and the one I have had for 10 years looked at my reports and said no way you can't be missing enzymes they're just compromised! huh? it says right here they aren't there doc! and the Lyme test he want me to do a Western Blot of all things, no way. I am going to see the doc from church, he also is getting better with chronic Lyme
    Please keep me posted on your appt and I would detox and stop everything you can. I figure after 20 years I've dumped so many herbs in me I'd probably sprout if I stood in the dirt long enough! :) I can't handle heat any more either so we're thinking of selling and moving to the coast, I feel about 99% better there!
    PS Have you tried D Ribose for the muscle weakness? that and enerzyme are ones I would never do without, it seems to help that jerkiness. The light headedness i take the magnesium lots 1200mg plus calcium and it seems to help that.[This Message was Edited on 01/17/2010]
  5. MIssAutumn

    MIssAutumn New Member

    Have you been tested for leaky gut and candida/ parasites or have done a Comprehensive Stool Analysis? When I did that and we treated the leaky gut, parasites and all the things growing in the gut that shouldn't have been I felt 99% bette,r then the doc started treated the Lyme and babesia without checking the liver, that's when I went spiraled down.
  6. herbqueen

    herbqueen New Member

    Thanks! What part of the country do you live in?

    You mentioned your doctor friend only does abx short term and does alt?---I wondered how he came to that conclusion- so many say abx is the only way to get better but the treatment and even some herbs have made me worse like you. What is he using to treat and is he seeing success? I worry that I am in the autoimmune disease category now/very difficult to treat and that cmbined with my sleep and chemical sensitivities make me a complex case! Right now I feel so bad I feel like I definitely have a rare AI disorder--and of course the fact I did have optic neuritis/NOW have numbness, tingling jerking,weak trouble speakeing , swallowing etc. etc .is truly frightening. Up to now I have walked every day almost for the past 12 years even during my last crash on the herbs. But this one is different.

    I was sleeping before this crash (waking alot-but sleeping and sleeping decent over the summer). I have not slept this bad since 12 years ago when the "fibro" first hit. Before this crash I did find meditating was helping my sleep/balancing my brain. Right now nothing is working.

    You mentioned inproving 1 level on the ionic foot bath? Can you explain that? Also what kind did you purchase? I figure they are so costly I should try one before to make sure it works and doesn't make me worse!
    I'ts a shame I have a beautiful sauna my husband built me but too illright now to use it and I seem to react to the cedar as wll (lung wise...again how darn sensitive I am!).

    Curious how old you are? I am 48.

    Thanks and sorry for all the questions, but we seem very similar in many ways in regard to treatment crash's.
  7. herbqueen

    herbqueen New Member

    One more thought... have you explored LDN? I tried it for 1 year. Started it during my first crash and in 3 months was sleeping again and felt like I could function again. I did stay stable (had lingering symptoms and worse brain fog created from the 1st crash)..I decided to go off it since I thought he candida diet and the meditation program I was following were the real difference makers. In hindsight I may go back on it.

    It supposedly disrupts sleep (and it did mine fr awhile but then felt I was probably sleeping better on it.. but having lots of vivid dreams for sure).

    Anyway just wanted to make you aware of that.
  8. MIssAutumn

    MIssAutumn New Member

    I haven't heard of this.
    Everything I have read on Lyme says the spirochetes will start to encapsulate within 20 mins of abx IV and all the other co infections will mutate or 'hide' in muscles, so to me and this doc abx would be good for 20 mins but he does use them longer, he doest's treat it all with abx because of the damage they do to our GI tract and the bugs become immune to it.
    He's the one who told me about the Teasel tincture and the nanoparticle silver. He'll build up the GI tract, up the inner core temp and recommends light exercise, he told me to get a mini trampoline and not to actually jump but to let the motion of the trampoline bring you up and down - make sense? but boy is it BORING!!!! but upping the core temp will kill off the bugs. but we have to first fix the gut, detox the heavy metals and get rid of any co infections and viruses before attacking the Lyme. And he does the treatment as cost effective as possible- which I like
    I felt 100% better doing the anti Candida diet and yesterday did a detox and it pulled some yeast so have to go over the diet and see what I'm eating. My sleep the last few days has been disruptive so this might be the cause and the brain fog has been back today. Showered and was going to use moisturizer on my face and put mousse on instead!!:)
    We all have immune deficiencies or we wouldn't have Lyme. I know lots of people-loggers and people who have been bit, who probably get bite 5 times a month and are fine but their immune system is healthy. I read that 90% of the immune system is in the gut, so that's why we feel better when we get that on the right tract.
    The detox bath is called LifeDetox http://www.ayurveda-herbs.com/35.htm, I had checked into them for months and found this one. but if I had not been so impatient I would have scrolled down and seen the one for one person not two and would have saved money. A lot of my symptoms are easing up withthe detoxing and since, like you, I can't do a normal attack on this crud I have to go alternative. I figure if I get most of the crud out then can up the herbal attack.
    I live in Ca northern part of the Sacramento Valley, the weather here is extreme - it can get 6 in the Winter, but most times 16-20 as a low & not much snow and 120 in the Summer and we'll move to Morro Bay and I'm 64, I don't mind questions. I'm curious about people too.
    A lot of my old symptoms came back, too like yours and worse but they have let up.
  9. herbqueen

    herbqueen New Member

    thank you Sarah-I'm in NH so opposite side of the country! I'm glad to hear you have recovered from the crash.. there is hope! Your doctor's approach sound similar to the Naturopath/NP I just met how has lyme. She does use abx if necessary .. but she said she like the "old " drugs and Bicillin shots so as not to mess with GI tract. But her preference is herbal/alternative. She also mentioned IV H2O2 which seem a bit scary. But right now again her emphasis on sleeping again ,detox metals and methylation cycle , adrenals and then kill the lyme she said the herbs will work again and I won't be so sensitive. Let's stay in touch............. Is there a way to private email on this site? Not sure.
  10. MIssAutumn

    MIssAutumn New Member

    I've heard of H2O2, do a search on it and get the information yourself you might feel more comfortable with doing it. the plan from your nurse practitioner sounds like the ones everyone I know that has gotten better ha done. I don't remember if I mentioned Pecterol, I read about on a site where a women doc had Lyme and herxed too bad for the conventional treatments, she used a prescription Choles..something that lowers cholesterol and Pecterol is the natural equivalent. My son has a web site Rideloud.com and he has some good info you were asking about, he doesn't sell anything that has to do with this site- its a motorcycle accessory site but will have the info you wondering about.
    I had to add that you need to contact him, it doesn't matter if it's sales or customer service, he'll answer your questions.
    [This Message was Edited on 01/19/2010]
  11. herbqueen

    herbqueen New Member

    Is it pecterol or the natural metal detox pectin product Pectasol? ( I think that's how its spelled_ . Yes I've heard of the prescription meds for neuro detox=Dr. Shoemaker I believe..........

    Could not find where to look on your son's site.

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