posted
As a lot of you MIGHT know, I what I would call (and llmd) would call a glaringly positive WB from Igenex and a positive from Labcorp, CDC positive but only on the IGM side.
Another thing you might know is that I lost my marriage due to this and the divorce will be final in a month. So, there is a problem. But, health insurance never did me much good - I mean, look at me, I'm doubly worse than I was when I was diagnosed and that's an understatement.
My llmd in Tampa did not treat my Bart first, I wonder why? I don't know. The llmd worshipers will make an excuse or a reason, but from everything I've heard, we should have hit that first. But, none the less, it really doesn't matter.
I have a bottle of Levaquin and a bottle of Rifampin. I know none of us are doctors here but I know for a fact that some of you have taken this combo. I also have refills that are going to expire VERY SOON, so I really and pleading for some PMs to tell me how they did Levaquin and Rifampin.
Did you take them together? Pulse? Do one first? My doctor dropped me (and a few others from different boards, different doctor rating sources, etc) before he told me what to do with them. He said he would call but sent me a dismissal letter. So, I have these bottles and I'm going to use them. I also have a little bit of Flagyl left.
I also will order abx from an online pharmacy. Some people were kind enough to send me some info on how to buy abx and I'm going to do it if I can find the money. I will sell any little bit that I have to get them. I have nothing left after the divorce but baby clothes, baby stuff, etc. I'll make it work.
I also want to know about Penicillin. What drugs are Penicillin. I feel like if they use Penicillin (or that's what I've been told) for Syphilis, then why not Lyme? Or why not both? I do have a primary care for now and I will get my levels checked as much as I can to prevent death or further damage.
I never dreamed in a million years I would be doing this, but I have to get better, my son is 3 and he deserves a better life. I live in so much pain, I feel like a shell of a mommy. If no one else will help me, then I'm going to do it myself and I know there's others who have, so I want to be included.
PM me please. We aren't doctors and I know that, but we've been to enough and you guys have been to llmds (smart ones - just because one starts out with i.v. right off the bat and then drops you doesn't mean he's a good one) to know what to do.
Thanks to the health insurance companies who won't cover my treatment! Thanks to the testing that is inadequate! Thanks to the doctors that look at me like I'm from Mars! Thanks to the doctors who pass the buck! Where's Dr. House when you need him, right?
Please give me some ideas. I have Bart. and Lyme. I think I have the meds for Bart - Levaquin and Rifampin. I'd like to start there. Please, Please, Please, PM me.
I have never in my life sat around thinking of the best way to kill myself ever. Now everything I see, I think "Oh, I could hang myself on that so easy because I know it wouldn't break."
But I have my little boy, so I'm fighting. Please help.
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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posted
i have been there...i would self treat with salt c protocol, it has saved my life after abx failed me. good luck
Posts: 82 | From philadelphia | Registered: Aug 2007
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posted
What about salt/c and abx together? Can someone send me info about how to start Salt C.....? You all know better than me about all of this. What about penicillin, abx, and salt/c?
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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posted
Also, I know I can search salt/c threads but it's all confusing because everyone seems to start different, be at different levels, etc. Guidance from one person would be great.
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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posted
I don't know anything about self treating but your post absolutely broke my heart. I have a 3 year old myself, and even though I don't know you I want to say DON'T GIVE UP!!!! I will pray for you and for a good outcome on this. Keep us informed. God bless!
Posts: 49 | From Minnesota | Registered: Jul 2009
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You're not alone. I was diagnosed in May and all 3 of my sons have it too.
Have you read Advanced Topics in Lyme Disease by Joseph Burrascano, M.D.? It's free online and a starting point. Another book - 10 Top Treatments for Lyme Disease - was recommended to me recently.
Sharing knowledge is essential with this disease because the medical system isn't ready for it by any means.
Focus on the good news...you know what you have and you found some resources. We'll stay in touch.
Any idea how long you've had the infection?
-------------------- Linda Posts: 39 | From Lexington, Virginia | Registered: May 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Don't give up. We are all fighting for the quickest
and best cure. It will come. Right now we are the
ones who when the history is written will be the
ones who get to try it first. And your daughter can
tell her kids-my mom helped in the cure for Lyme disease.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
PM sent with instructions from your former DR. on how to take the Levaquin and Rifampin.
Posts: 3975 | From usa | Registered: Aug 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Bicillin (which is penicillin) is a good treatment for lyme. It can be used twice each week, and has worked well for many. You are right that it is a good treatment for both lyme and syphilis.
You will probably need a prescription to buy it.
Hang in there -- you can make it to feeling better. Please go through it with all of us here who know how you are feeling. I was disabled and now back up and living life, so I can tell you that these things are treatable without IV.
Posts: 2557 | From home | Registered: Aug 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
PM sent with instructions for salt/c
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I would read ten top treatments for lyme, he goes into great detail which antibiotics lyme folks should stay clear of which ones kill each form of the bacteria and how to pulse them. There is also good info here and online about other treatments that may help you if the antibiotics fail you. There are natural antibiotics that maybe more affordable and easier on your body without medical suppervision. I wish you well. best of luck through this difficult time.
Posts: 161 | From sonoma county | Registered: May 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Amoxicillin is a Pennicillin-class drug.
It is cheap, and a good Lyme drug. You should have an easy time finding it online.
It comes in either 500mg capsules or 875 mg tablets.
I would start low and work your way up with it. You may herx on it. You need to either take it every 12 hours, or every 8 hours. (so twice daily, or three times daily). I would do every 8 hours if possible.
Green tea boosts the effectiveness of Amoxicillin!
Check on this site to see what doses some people are using. 2 of the 500mg capsules, 3 times a day, for a total of 3,000 mg per day, would not be too much to *work up to.* I would start at 1 500mg capsule twice daily though.
A few LLMD's use very high doses of this stuff, much higher than 3,000 mg total per day even.
You don't need Probenecid with it (which some people will recommend), if you take enough Amox.
Amoxicillin may be more cost-effective for you than Bicillin, since Bicillin is an injection. And I would not try to inject Bicillin on my own, without being trained on how to do it.
Also, if you are going to self-treat....one very useful tool will be http://www.drugs.com. On the top blue bar, you will see "Interactions Checker"...which is a God-send.
You type in what drugs you are taking, and it tells you all interactions. VERY useful.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Nessa, Although many here have experience, we are not qualified to advise you on self-treatment.
I'm so sorry about the crap you're going through.
You may be able to reduce your pain by taking supplements that reduce inflammation.
The Lyme bacteria use alot of magnesium to live. They use up the magnesium in our cells, which causes problems, since mag is needed for all the enzyme processes.
Magnesium deficiency causes many symptoms, which are recognised as symptoms of Lyme Disease.
Taking supplemental magnesium and eating foods rich in magnesium will help to alleviate these.
There are many facets to treating Lyme other than just taking antibiotics.
Carol
[ 08-01-2009, 08:16 PM: Message edited by: Carol in PA ]
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Yeah like too many factors, some that don't make any bit of sense to me. This isn't directed to you at all. Well, I'm so bad off, that I feel like within the year, I'm gonna end it all so I might as well try to get better before then!
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
If you do decide to take antibiotics, there are many people here who can suggest dosages and combinations.
Antibiotics kill the bacteria in the intestines, which are in a delicate balance between the useful and the harmful.
The good bacteria help to digest food. When they are reduced, the bad bacteria take over.
Antibiotics can cause stomach pain and upset. Your digestion may be affected, and some get diarrhea.
When you are not digesting and absorbing food properly, you may develop allergies, arthritic pain, or symptoms of B12 deficiency, such as pain and numbness in your feet.
People who don't have enough stomach acid, or who take medications to reduce stomach acid, can have B12 deficiency. This happened to me. My toes went numb, and my legs ached. I took sublingual B complex and B12 and saw almost immediate improvement.
There are a number of probiotics available, which can replace the good bacteria in your gut. The Lymies here know which ones work.
Yeast infections are common among those who take long term antibiotics. This can affect your digestion too.
Carol
If you want to get started on strengthening your immune system, you can take magnesium.
posted
if you're going to self treat you might want to try out rife and herbs. By herbs I mean Rizol-MY. It's very strong and works on Bart/Babs/Lyme at the same time.
Posts: 655 | From USA | Registered: Sep 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, probiotics are crucial. Take them 2-3 hours away from antibiotics. If you take ONE supplement while on antibiotics, take good probiotics from a health food store. Up to 4 capsules (perhaps two of one brand, two of another brand), twice daily.
I'm basing 4 twice a day on the typical dose you get from a typical health food store...like Jarrow brand. The ultra expensive ones, ($50 per bottle ones) you can take less.
If you are tight on cash, I wouldn't recommend the ultra-expensive ones....if you take them regularly and you take enough of them, I find the medium priced ones are just as good, for me. Keep them in the fridge.
ALSO, all the LLMD's I've ever been to have had me on Nystatin always while I was on antibiotics. I'm not sure how expensive this drug would be online, but it may be important.
It only goes through the GI, so it isn't very stressful on the body's organs. Some people don't take it I've noticed, but up until recently, I never had GI issues in many years of taking antibiotics, and I believe it was from never missing a Nystatin dose.
So this may be a really important prescription for you to get online, if you are concerned about GI issues (or worse) from yeast. Most people take either 2 pills twice daily, or 2 pills three times daily. The dose of one pill is "500,000 units" (it isn't in "mg").
Like Carol said, none of us are really qualified to give you advice....but if you are going to do this on your own, it would at least be nice to be as educated and get as many opinions as you can. We are all human and we could all be wrong and not know it, so please keep that in mind as you listen to us.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I know and FULLY understand that none of you are doctors. I wish you were! I wish I had someone in my family who was doctor. I appreciate all of the input.
What would you think if I experimented, I think I'm going to blog about my experiment anonymously.
What if I tried everything. I will ask and inform my doctor or a doctor (since I am switching I think because my doctor is a douc** bag.
I will have him test the function on my liver, kidney's and my mom has a high tech blood pressure monitor because of her heart condition.
I am thinking about SLOWING trying the Salt/C protocol. I am going to order penicillin and some abx. I am going to do it all together. I think I have found a few places that I can order from. If anyone knows a good pharm for all different kinds of meds, please let me know in PM.
I think that someone suggested something but it was deleted by a mod. Can someone PM me some info about a reliable and trust worthy pharmacy without a script. I can not afford a LLMD, it is OUT OF THE QUESTION. There's nothing left to sell, I have no husband, I have no family with money.
I am going to do this I think, I'm scared, but I'm also feeling like I'm literally being eaten alive and that's scary too. Is there a certain doctor I should look for? Holistic? What kind of doc would take what I'm doing with an open mind and at least agree to test my blood and go on the "trip" with me?
I can't afford a rife. So. for now, I'm just going to see how this goes.
Should I hit the Bart first? I have the abx for that and refills? I will try to find Nystatin. I might have a refill for that as well.
Any advice with what to start with, dosages, etc. PM me. I'm going to experiment. This is my life. I'm either going to die because I chose to not take it anymore, die from my experiment, or get better.
Again, I do keep in mind that we are all in the same boat and we aren't doctors. I have to be my own advocate here. I hope you all understand and respect that.
Thank you so much, Nessa
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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I wish you well. I know that there are people that have self-treated successfully. It's too bad things get to the point that people have to do that. I give you alot of points for deciding to take control and fight back.
Posts: 984 | From San Diego | Registered: Nov 2006
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
While self treating is probably not the right way to go for most people, it can be done.
It is a matter of finding a method of treatment that makes sense to you, and learning more as you go.
I have been treating my wife for over three years using Rife frequency treatments, and she is substantially better than in the beginning. Not cured, but she has a normal life most of the time.
Good Luck
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I didn't start making any progress until I started to empower myself and self treat.
The doctors don't have all the answers. If you can afford a Naturopathic Doctor that does energy testing that could be a good avenue for you.
Sending you Healing Thoughts,
Gael
P. S.
YOU CAN DO THIS AND YOU CAN GET WELL!!!
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I don't condone self treating; but totally understand getting to that point. I do believe we have to empower ourselves and take control of our own health.
That being said, I would not do everything at the same time. That could be very dangerous. If anything, when self treating, I would do moderate treating, closer to a low and slow treatment. Not having a physician(LLMD) who has years of experience to guide you, I would proceed with caution.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I would order Amoxicillin over Penicillin. Amoxicillin has been proven effective for Lyme.....I don't think Penicillin has as good of a track record, but I could be mistaken.
There has to be a reason most LLMD's use Amoxicillin over Penicillin.
Posts: 4590 | From Midwest | Registered: Jun 2008
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I am also self treating as my endo system is in such a mess that I cannot take the prescribed treatment nor am I strong enough to start killing (it cannot be by abx)
I am going at this holistically and working on my system to start the healing process which we all have within us ready to be activated and which is very powerful indeed. Many people have recoverd from serious illnesses like cancer by working with their own healing power naturally and not taking medical treatments, in fact they often cause more illness than they treat. At my stage of health I have no choice than to go this way but I am glad because it has given me the chance to do a great deal of spiritual growth too which will be of benefit to me and others in the future. So for me this is not just about killing bugs, it is a quest to rebuild my body and whole self from scratch. When I caught the bacteria, I was already in a bad state through several episodes of mercury and pesticide poisoning so it is not an option for me just to concentrate on removing the bugs, even if that was possible which is not. If we do not start at the basis of the problem ie unhealthy body system and emotions then we are just leaving ourselves open to the next problem, which in the Western world and with the Western diet, is going to be cancer or heart disease.
If we give our power away to doctors however well meaning, we will miss the chance to make the most of this journey - our battle with borrelia and co-infections. I am not saying that we should not use them, but we must accept our own ultimate responsibility for our health and get in touch with our intuition which will lead us to make the right choices for us, and give us confidence in our own healing ability.
So at the begining of my own journey, I am concentrating on detoxing my body, with simple measures like body brushing, massaging my skin with oil , drinking water, sun bathing, exercise and a healing diet, of vegtables soaked nuts, soups legumes and little dairy products. I have given up coffee, sugar, chocolate alcohol meat fried foods all processed foods and will stay off them for life I hope.
Already there is an improvement in my joints - less pain and that wiped out feeling which kept me in bed for a lot of the time has gone. I am using a sauna to detox and will at some stage start with cleanses when I am strong enough. The biggest improvement has been mentally though in that I no longer feel fear and out of control with borreliosis and looking for help outside of myself. I will one day feel grateful towards it for the lesson it has taught me.
I no longer need to 'run around' looking for the newest craze, I can sit back and wait to see what my body tells me to do. It might be rife herbs or photons I don't know. I am becomg a little wary of the A1 drops due to the reports being so alike. Are they just water? I believe that there is a healing that can come from a source outside ourselves which is not fron God and which will prove harmful eventually and it does not help us psychologically too which true holistic healing does.
Muscle testing is a great aid and it can be learned which another way of taking control, and it is not through the use of expensive machines. I am all for doing things for free if possible and the possibilities are endless I think.
I wish you well with your own quest.
mati
Posts: 148 | From europe | Registered: Apr 2008
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posted
I thought Amoxicillin was a form of Penicillin? Correct me if I am wrong? I appreciate EVERYONE'S positive input. I can't tell you how much it means to me, considering I've had such a negative outlook about this disease and some of the outlooks on this board. You all have been very helpful.
I'm going to experiment and blog about it from day one. I just need a doctor on board, a game plan, order some meds (I still need some pharmacy names that don't need scripts - PM me) and then I'll get going. Oh yeah, I really need to follow Dr. B.'s guidelines and cut out some of the obvious things I'm doing and not doing. Smoking cigarettes and doing exercise. Yeah, I said it....I smoke. Please don't hang me. Well, with the way I feel lately, please do. (JUST KIDDING) Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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