After 10 years of symptoms from lymes and 2 years of positive blood and serum results , I have a DR. treatingme!. I am starting Doxycycline 100 mg twice a day, I am finally on my way to getting back to myself. I know many people have been on this and any information on what to expect will help. I also have Babesiosis coinfection and know I have a way to go, but I feel so greatful for finding the right Dr. thanks to a recomendation from a kind soul I met by coincidence. What can I expect from this treatment, what can I do now to help myself? Thank you:angel:

Congratulations! I'm in a similar situation to yours. I've been sick for many years, had a test for Lyme come back positive recently, and I have an appointment with an LLMD that I just made this morning (but not until January though). Although I haven't started tx yet, I'm nearly certain this doc will treat because I tested positive for the 31 kda confirmation test, which has a 97% specificity for late Lyme. It's such a joy to have the feeling that finally, something will be done about this. Sorry I can't give you any info on what to expect from treatment, haven't done it yet myself. Good luck!

Hi SarahsDaddy, this is great news! But the dose of antibiotic isn't strong enough. It should be 300 to 600 mg. And you should be on more than one antibiotic, beings there are different life stages to a lyme bacteria.

What treatment are you going to do for Babesia?

How lyme literate is this doctor?

You will want to try hard to avoid sugars and yeast...You can go to the health food store and get alternatives to sugar. And you can get yeast free breads there. These cause Candida while taking antibiotics...

You can also get things to detox your body. Such as Epsom Salt and Hydrogen Peroxide baths. About 2 cups salts and 64 ounces H.P. Soak for 30 min.

You also might want to check out Dr. David Jernigan and order the CNS for removing ammonia from your brain. As bacteria's die they let off gases. It will help your mind stay a little more clear.

Hope you get to feeling better soon! Since you have had this along time it will take a long time to heal.

Good thoughts and Prayer's coming your way.

Jodie
:D

Wow! Great info JOJO, Thank you for the advice .My doc said this is the start of it, he has a plan to do this for a month to see how it effects me and then to step it up. We talked about doing the IV treatment after the orals, maybe in a few months. I think the recophin. I was so excited and relived to be treated I didn't ask a lot of questions. I really appreciated your advice and will look into it.

Jo Jo is right, you need more medication. I was dx just off the pos of 31 and IND of 34 and 41, we will retest after die off.

I was put on doxy (300/day), zithro and flagyl. I have decided to start with the doxy and add the others next wk. Sarah, what did you test pos on?

Velvet what have your symptoms been?

tested positive for the following IGG bands in march of 06 (18,23,39,41,58,93) in both western and Spinal Tap serum was the same. All this came after 7 years misdiagnosis. august 08 repeat all test and still have all bands but 93. First time tested for coinfections and Babesia is present. I wasn't told by doc about the die off effects, I am going to bring up all these helpful issues with him. Thank you all

Wow why did it take so long to dx you? Was that the first time they ran a lyme test?

I was played like a violin by the ID Doc I saw after first testing in 06, I was told I was infected years ago and doesn't require any treatment. He told me that my body has some damage that will take time to repair. I didn't know what to expect and took his advice seeing neuro, arthritis, pain docs, you name it. after 2 years of symptoms increasing and new ones arriving like seizures, and others, saw new set of ID docs, 3 of them, one of them is at NYpresbyterian hospital and only one said I need treatment but he couldn't do it. recommened to see a llmd. So, I also saw Under our Skin for the first time and a week later showed up at Dr. Raxlens office in NYC. He doesn't take insurance and my wife and I set ourselves up to dish out thousands of dollars and do what ever it takes to get well. Then a coincidental meeting , my mother met a long time chronic lyme patient at the pharmacy and she offered to give me advice and hooked me up with a Doc that she is seeing for treatment. Underground he is helping a lot of people in my area w lyme. He is not a famous doc but is up on all the latest. I really appreciate all the help i can get here, people really do have concerns about others and it shows.

So you tested positive in 06 and they would not treat you or were you one of the lucky ones (like me) that did not test pos by cdc standards?

With the soak, do you soak in a tub with hot water or just your feet to detoxify?
How often?

I have found exercise works well too, enough to build up your heart rate. From my research it puts oxygen into your blood which can kill the organisms. but you must do it often because new orgs are growing until you break the cycle. I have only been doing it two weeks will keep you posted. I have a new lymes specialist appt on Monday . I hope he is good- my old lymes doc can't figure it out after three rounds of too low antibiotics.
thanks.

I have read that some people are told not to work out- or do anything aerobic such as running. Why is this? I do the eliptical daily and weights...I just started treatment. I feel like if I dont work out I will feel more drained, working out has always made me feel better regardless of how sick I have been or tired (from other things) in the past

whats crazy is I did test positive acc to cdc standards. Still nothing was done. iwas told that because it was old lymes it didn't need treatment.
I am interested in the soak too, whats up with that.

2 cups Epsom Salts, 64 ounces Hydrogen Peroxide. You soak in the bath tub. For 20 to 30 min. Some people can not get in a tub or don't have a tub so they just soak their feet.

I was doing it about every other night.

Dr. David Jernigan also suggest other detox's if you research him.

Hope that helps.

:D

I will try it thanks

Sarahs Daddy - what did you think of under our skin? did you order the DVD? i have seen all the trailers and really want to see it. I'm a patient of Dr. R and I saw that he was in it?

Also, I just started reading Cure Unknown by Pamela Weintraub and am hooked! So much info in there about the politics of lyme.

glad you're getting treatment. Babesiosis is not fun... we're treating mine now after first going after the Lyme then Bartonella. it's kicking my butt honestly... i haven't felt this bad since I first started treatment. But I'm hoping that means it's working.

keep us all posted.

kt

UNDER OUR SKIN, that title is so fitting in many ways. If you didn't see it, you must. My DVD is a gift from my brother, in his support he saw the trailers online and ordered me one. You need to see this film. I saw this film in the worst condition I have ever been afetr years of diagnosis. It came at the right time for me. The film will evoke every emotion possible, make you feel alive and the best part is the motivation. It made me move my butt and with in 1 week of seeing the film, My wife and I went to a new Doc that really understands this disease and what is happening to me. And 2 weeks Later I am being treated and on my way to better days.
I was fourtunate enough to have a recomendation from a chronic lyme suffer, in a chance meeting told me how her whole life has now change for the better with a certain Dr, he is getting her life back, and hope he will mine too.
This film can help everyone, things need to change fast in this country, information is the only way this is going to happen. If you are at a crossroads in this illness, this hour and half film might be the best dose of meds you have gotten in a long time. KIT after you see it

Its been 12 days on the doxy and I have had some side effects. I feel nauseous daily and vomit here and there. I know this is all normal and I took jojos advice about DR. Jernigan Book. I tried the hotbath soak with a combo deal of ingredients, Felt good. I don't know what my doctors plan for babesiosis yet. What should I expect, Any advice, what is the treatment you guys had or are doing? Thanks

Hi Sarahs Daddy -

We're treating my Babs now with Mepron (disgustings, but I hear this works), Zithro 250 mg 2 x a day, and Rifampin 300 mg 2 x a day and also added in Heparin 1 time a day, which apparently makes it hard for the Babs to hold onto my blood cells. I've been on this for a couple months now. Still trying to kill it. This one puts up a fight and has be herxing pretty badly, but hopefully once it's over with I'll feel a huge improvement. Hang in there!

kt

thanks for that, Do you take any b-12 shots to help, I was told by a nurse that I will be starting that as well? Hope you are feeling well

i was taking b12 shots last year, and i really liked them. Dr. R tried to start me on them, but i was too scared to do them myself at home. you know what... i should really just suck it up and do it though. i'd say you should definitely do that. i'll have to ask Dr. R about it again when i see him again in 2 weeks.

hope you're doing well this week. i've been herxing really badly since the sunday before thanksgiving. i had a few lesser days, but overall i'm feeling pretty rough. having bad chest pain today, which is my least fave. i just cancelled my GP appt for tomorrow. now i'm wondering if i should go in. but it seems like everytime i DO go in, they do a full work up and say ok just keep pushing through. seems to be the MO for dealing with this disease in general.

Hi SarahsDad, I did B-12 shots for a few years. When I first started the needles where like a inch and a half long...ugh! Did them in my legs. Then they decided that the quarter inch needle was just as good! Thank Goodness!

You get use to them.

Good Luck!

Jodie
:D

Is it helpful? I'm not liking the whole needle deal, but if it is worth it, if it really helps, I can suck it up and do it. I just don't want to put myself through all that to have poor effects, how did you really do with it, jojo, kt

Hey Sarahsdaddy -

I was a scaredy cat when it came to giving myself the shots, but i'd recommend them. i did them for a full year with my general practitioner before i got my lyme diagnosis, and they were a noticeable help. i remember feeling a little more spring in my step afterwards, sleeping better, and i also remember being able to focus better at work! I don't know if those are the intended effects per se, but i do remember even my boss commenting that she noticed a difference. i did them a couple times with Dr. R too, who wanted me to do them through my Lyme treatment. but i stopped when i had to start doing them at home b/c the thought of my sis sticking with me a needle full of vitamins was a little scary. but actually i started taking my B12 pills again this week after we started this chat, and i'm going to ask him to give me a shot again on the 17th when i see him. i would go for it. every little bit helps and the vitamins/supplements have been a HUGE part of healing for me (just got a big shipment in today from a discount vitamin website i found!).

Thanks for the nudge, I sure can use the sleep, and I deffinetly need the focus, I have been really off in cognitive dept. I am fine when someone else gives me a needle, but myself ,man i am a lil wuss. If I can have some of the same results you did then to me it is worth it. Thanks for all the info, I'm curious what other vitamins and supplements help you.

Right now i'm taking vitamin c (2 pills 2 x a day), essential fatty acid (3 pills 2 x a day), magnesium (1 pill 3 x a day), l-carntine & coQ10 combo (1 pill 3 x a day), magnesium (1 pill 3 x a day) and also taking colloidal silver and elderberry extract as anti-virals. i've found all of them helpful for different things, and especially helpful when i get all of them in in a day. in general, i'm less sore and have a little more energy, mood stability, etc. when i take them. also, the magnesium and l-carnitine really help my nervous system. i get jittery and shakey again if i miss those for too long. and i was especially surprised at how well the silver and elderberry do at keeping colds/viruses at bay. i used to get sick SO much. and even though all the abx keep all the bacterial stuff at bay, i haven't even gotten a virus since starting the supplements. even with all of new york sneezing and coughing on the train every morning/evening. it's an amazing feeling.

are you taking any supplements?

I am only taking omega 3 fish oil, vit C, multi vitamin, all only once a day
I am going to ask dr. what he thinks about it, but i plan on getting more supplements into me. I need all the help I can get so I appreciate your advice and will start getting some more.

Update
I have been on the doxy for 3 weeks now, been very sick. vomit 1 to 3 times a day for past 10 days. late last night I vomited blood, not a lot but enough to freak me out.So I went to doc first thing this morning and he switched me to OMNICEF, he said I can take with food and is softer on the stomach. So happy to have a doc who understands, he also gave me my first B12 Injection today. I will be doing them often and feel confident from all your advice and stories here that it will help.
He told me that I also have Epstein Barr as well as , Lyme and Babesia.
I never heard the Epstein barr from any other doctor before, said I could have that from when I was a kid. He said most lyme patients have been exposed to ep barr too, anyone else?

Hi SarahsDad, sure hope changing the med's helps your vomiting. ugh! I want to give you a heads up, that when you vomit so often and if you sweat alot from the Babesia. Make sure you drink lots of fluids. I wound up in the ER a few times from becoming extremely dehydrated. This is something you want to avoid at all cost. You might want to try Gatoraid. Or Pedyalite for kids (less sugars). No one ever told me this when I was going through what you are going through. You have to stay hydrated!!!

I myself never saw any miracle energy power from the B-12 shots. BUT I know that B-12 is very good for our mental. I was sooooo deathly ill when I was doing mine I just didn't see any big difference. Do you also know you can go get B-12 supplements some of them are sublingual. This is what I do now. I like the flavor of them. It won't hurt you to do both. B vitamins we sweat and tinkle out.

Now with the Epstein Barr, yes I have this also along with Cytomeglovirus. These are in the herpe family. And when we have flare ups we are told we have a good case of Mono....There are many many herpe virus's. It would do you good to look them up and read about them. And the symptoms and what they can do to you. Did he happen to put you on a antiviral, such as Valtrex?? You will never ever get rid of these virus's, but you can try to get them back into remission. My doctor at the moment has me taking "Folapro" But I do have a supply of Valtrex handy. We are trying to see if I can wean off of them and just do Folapro. You can get this at the health food store.

You might also want to read up on Dr. Martin Lerner. He is a speacilist in Epstein Barr...

Take Care, hope the new antibiotic helps you some...

Jodie
:D

Thanks Jojo , I will look into the supplements, and Dr. Lerner info
Going to speak to doc about the meds too, thanks alot