I'm just about at the end of my rope here. I've been extremely sick for the past 2 years...bedbound w/fatigue/pain/weakness and now extreme nausea.
I have lyme and all the co-infections along w/many, many other bacterial and viral infections.
I've been on many, many different abx combos, supplements, herbs, homeopathics...etc.
I've had my bad rc'd teeth removed and cavitations cleaned.
I see some of the best docs on the west coast.
Yet, I can't seem to move forward. In fact I feel sicker than ever.
I have a negative reaction to everything I put in my body. The illness is killing me and so are all the treatments.
I've been on iv zithro since Oct. I'm also working with some alternative therapies. My inclination right now is to drop the abx and just stick with the alternatives...but I'm afraid the infection will get even more out of control.
Would love to hear opinions/advice about what I should try next.
I KNOW that you are not docs and I will run all things past my docs. I am also not put off by definitive strong opinions that some members may have...so please share any and all ideas. I am desparate to feel better.
Thanks, Lisa
Posts: 92 | From berkeley, ca, usa | Registered: Jan 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
You said you have all the coinfections.....
I am assuming this includes babesia (sp?)
I have heard from others that babesia needs to be treated first....
was one of you med combos targeting the babesia?
You must be a hard case for drs.... having all the coinfections..... they probaly don't know where to start.
Maybe someone will know a good detox that could help too.
The only treatments that have worked for me are the ones from Dr. B's 2005 guidelines--nothing earlier--and some ideas from Dr. J, Dr. E and Dr. L.
My new pet treatment is a combination of mepron, artemisinin supplements, and primaquine, since I have a relapsing form of babesia that has developed drug resistance. I don't know if this will ultimately work, but for now it's actually making a dent.
I've been in remission from Lyme and bart for a few months, after being disabled 4 1/2 years. Don't know if they'll come back or not.
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Lisa, I feel your frustration. I've been there. Have you considered stopping abx and using a rife machine to control the bacteria load?
IMO, the abx can become your bodies worse enemy. This happened with me. It didn't matter which abx or combo I did, I was going downhill fast and becoming more and more toxic.
At that time it also didn't matter which herb, supps I tried because everything made me worse. It felt like everything I tried had a negative effect on me. It did.
When I was using my rife machine and only addressing lyme or the most common co-infections I made alittle progress but it was not enough, I was still ill.
It wasn't until I addressed parasites, did 10 colonics and did some major cleanses that I began to feel less toxic. The biggest improvement then came with using a muscle testing doctor.
Sure enough the bag full of supps, herbs, hormones etc that I was using in and on my body were harmful to me. A toxic body can't get well until you clean up and start dumping the toxins out of the body.
My real breakthrough with my rife machine came with muscle testing I started doing rife sessions that my body needed. The most amazing stuff was revealed. Staph, strep, chlymadia, malaria, yellow fever, e-coli, parkinson etc etc were all rife sessions that made a world of difference in how I felt.
Not that I carried all of these pathogens, but my body needed the frequencies that were in that rife protocol. I've done a years worth of some really intense rife treatments that rarely included lyme or any common co-infection treatments. All of these treatments made me feel better, not more toxic.
I knew I had bought a machine that would help me. After all it was a most amazing spiritual experience that lead me to this rife machine. I just didn't know how to use it to help me.
Only through muscle testing did I find the answers to healing in the way that was best for my body. I can't use the cured word yet. But what I can say is I can function in life.
I'm no longer that sick miserable woman who was confined to her home. I can participate in life as long as I don't over do it and don't push myself further than I am able to go.
Don't give up hope yet. There's something that can help you. One doesn't have to live in that constant state of turmoil.
Nope, I'm not a doctor. All I know is my story, my last 6 years of being in the fight of my life. For me abx wasn't going to cure me, ever.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6479 | From Louisville, Ky | Registered: Jan 2002
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bettyg
Unregistered
posted
Pam and Liz, so happy to read you are BOTH HEALTHY! That provides needed hope to us all.
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posted
lisag, its true you need to get rig of all the other infections first before you treat the lyme. then you should get a good AB and the first time you will feel worse because a mass of bacteria gets killed but then you will feel better slowly. its a long way. to get rid of the toxins its good to drink lots of water or nettle tea.
Posts: 21 | From Detroit | Registered: Mar 2006
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I've had my bad rc'd teeth removed and cavitations cleaned.
quote:
Lisa, How long ago did you do that work? Where did you have it done?
For the dental toxins (thioethers and mercaptans) to leave the body can take several months and it takes supporting treatments frequently enough to accomplish that. It also takes major support of the organs. Liver, kidney, skin, lymph, etc.
I myself did not show any sign of improvement for four months after having that work done. My husband was able to start walking again only seven months after the dental cleanup.
The removal of the infection is only the starting point - the body then has to get rid of the toxins that penetrated into other areas of the body. These toxins are not only in your jawbone, etc. They moved into many other areas of the body before you had the work done. And it will now take some time to get them out. takes the proper remedies, it takes neural therapy, it takes a lot of attention after the intervention. It is not going to happen with abx that will only move more toxic waste.
Are you doing colonics? Are you getting lymph drainage therapy? I know I will get shot at again when I say that - but your feeling nausea now is most likely due to congestion of your liver, etc. You are releasing so much toxin via the oral cleanup -- your body is not prepared to handle it.
No, I am not a doctor. But I have lived this myself, with my husband, with many patient-friends, and the story is always the same. It never fails. After a series of colonics and some other support, you will feel a lot different.
Don't give up now - they worst is behind you. Feel free to call me. But your doctors and their assistants are the ones to guide you through that. Ring their bells
Take care.
P.S. It's not clear to me from what you write -- are you doing two different protocols from two different doctors? Or are they coordinated for synergy, etc. Also, when the dental work is done, the protocols normally are not the same any longer.
Posts: 9834 | From Washington State | Registered: Oct 2000
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm sorry you aren't feeling better after all you've done to get better.
You've already received some very good advice but have you thought about seeing if treatment for neurotoxins might be helpful? Apparently some people can't get rid of them on their own and will remain ill until they do get rid of them.
Check out Dr. B's treatment guidelines, page 13 under Borrelia Neurotoxin. I haven't done this yet myself but plan to check into it to see if it would be helpful. Dr. B's Diagnostic Hints and Treatment Guidelines
Dr. B's treatment guidelines may have other information that could be helpful to you. I think he mentions somewhere in there that if one does not respond to treatment, then consider a full immune system workup.
I plan to try antibiotics shortly but I am also using Rife in a similar fashion as Pam. I have used muscle testing to control symptoms for a long time and about a month ago I started using Rife with muscle testing.
Like Pam, I'm finding that I need some odd frequencies, sleeping sickness being the most important but also many others such as staphylococcus, hoarseness, bronchitis, plantar warts to name a few and of course Lyme. These are frequencies that I would never had considered without muscle testing.
I've only been doing rifeing for a little over a month so I can't tell you what the outcome will be but I have had something great happen since I started. Not to gross you out but some disturbing things I have been seeing in my stools for well over a year are just about gone now. My doctor's couldn't figure it out, parasite treatment didn't help, tests for parasites came back negative, muscle testing alone wasn't helping much but the combination seems to be doing the trick.
As someone who has read a lot about treatments for lyme but not done a lot yet, I will probably try to make sure that I cover all of my bases with Dr. B's guidelines and also add Rife and other things along the way.
The answer for you is out there it's a matter of finding it and you will. I hope you find it quickly. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Here are some things that really helped me that you might want to research further or consider.
Please contact me if you need more information or want to know more about any of these things.
Radionics - A machine that is amazing at reducing spirochete load. Contact me if you want more info. www.mkprojects.com Healing Mantras www.naet.com - A lot of us have a confused immune system and needs to re-learn to recognize yourself first and then foods. www.nutrienergetics.com Alkaline Diet Reiki or some form of hands on healing treatment.
thank you so much for the words of encouragement and all the great advice.
i know it's been said before, but this site is truly filled with the kindest, most compassionate people. "meeting" so many caring people really is the bright spot in having this "lovely" illness.
let's see i'll try to answer as many of the questions about my current and past treatment as i can.
i have been treated w/abx for my co-infections. the herxing is just intolerable...i've been to the hospital several times because of the way my body reacts to the toxin die-off.
i have rife machine. i tried two incredibly short sessions...once again the herx practically killed me.
this all obviously indicates that my body is not detoxing well. in fact my genetic testing showed that i am missing the gene that creates glutathione.
last week my doc advised that i douse myself w/glutathione: IV, nasal, nebulized....guess what happen....i became EVEN sicker.
doc said back off for a few days and try again with much lower dosing.
i am on a constitutional homeopathic remedy and several detoxing herbs. my naturopath is going to review all of this and we may change things up again this week.
yes gigi....you have probaby hit the nail right on the head....my dental surgery was done approx 6 weeks ago. i'm sure all those toxins are just racing thru my body.
we did change my protocol post surgery and as i said will look at it again today.
i guess the big lesson here is that i need to be patient..it's very difficult though, since i've been sick for so long and tried so many different things.
i am having my first colonic this week. referred to someone by my doc.
i had a great toxin moving massage last week...but i think that also contributed to me being even sicker the past few days.
i'm going to try a lymphatic massage with a vodder trained therapist in the next few weeks.
both of my docs are ART trained.
someone also sent me some info off line about the essential oil approach. i like this idea and will discuss with my NP today.
i'm also doing some work on emotional/psychologial issues. prior to becoming ill, i was the type to hold everything deep inside myself, buck it up and keep on moving. i think many past issues are weighing heavily on me and need to be released.
before i was sick i barely ever cried. now i cry when someone says hi to me (an exaggeration, of course)...but it's amazing how emotional i've become?!?!?
i've decided to take a break from the abx...i don't think my body wants to have anymore "killing" going on right now.
i'm going to focus on detoxing and rebuilding.
abxe....i will look further into the info you provided it looks interesting.
i'm happy to read about so many of you improving...it is very encouraging.
i guess that's what i really needed to hear most...was that ppl have been as sick as i am and have improved.
it's hard to hold on to hope. but it's key to becoming well again.
i feel so lucky to have found such a great support system here. thanks to each and everyone of you.
warmest regards, lisa
Posts: 92 | From berkeley, ca, usa | Registered: Jan 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Remember that the herxing is a chemical reaction caused by namely cytokines.
Its a reaction that your body has to the toxins.
Moving past emotional blocks and creating a no fear zone of complete love for yourself will actually calm your bodies reaction.
Its a manipulation of your bodies subtle energy systems that can make a huge difference.
Sometimes we focus so much on matter that we dont feel what is driving it.
Even if you can calm you HPA axis response a little this can make a profound effect.
Good luck and god bless
Posts: 2905 | From New England | Registered: Sep 2004
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