posted
I've been on bicillin shots for at least 2 years, maybe longer. It is the best thing I've ever been on by far. I've been through all the abx with my LLMD which I'm not seeing anymore. The bicillin was the last thing on the list and it works really good as long as I stay on it.
My problem is, my PCP moved so I don't have anyone to give me the shots now. I really doubt I can find anyone willing to give me that big of a dose once a week.
I'm thinking of trying some alternative since I'm so much better now. I need some suggestions. I'm thinking of trying the salt/C but I don't know much about it.
I've been reading here but don't know where to get the salt or what kind. I know no table salt. Do you do this protocol alone?
I also have some artemesinin(sp). Do I do this alone or with abx? I do have some biaxin and rifampin here. I'm just so confused and the more I read the more confused I get. LOL
I also have some silver. Does that kill lyme or what? I just need some advice here. I've been 3 weeks with my shots and I don't want to start going backwards. I'm far from well but so much better than I was.
Any advice would be appreciated.
Thanks, Connie
Posts: 495 | From KY USA | Registered: Dec 2004
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I'm with you. I think if it was working I would want to stay with it. Is there a way to call your PCP and get a referral to someone who will treat?
-------------------- 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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posted
I talked to her before she left and she doesn't know anyone. The clinic where she worked is closed but someone else bought it and it will be opening back up but not sure when. I'm going to see if the dr there will continue where she left off.
I just need to do something in the meantime to keep from going backwards. I really hate losing her. She has helped me from the start and also has helped others. She even uses Igenex since I told her about it.
Thanks for your reply. I noticed you are from KY too. Where are you from?
Connie
Posts: 495 | From KY USA | Registered: Dec 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Sapphire...
You might want to contact the new docs and just walk on in for your appointment and act like this is "normal".
If YOU question it, or act like they might not do it.... they will follow suit.
It is in your chart.. and possibly... without commotion... they will continue with the treatments as she did.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If you decide to do the salt/c protocol the best salt to use is sea salt. I use Real Salt (sea salt) and powdered Vitamin C with bioflavinoids. I get them both at
I started with 1/4 tsp salt and mixed in 1/4 tsp vit C in a large glass of water.(per day) I ramped up 1/4tsp at a time according to how I was herxing. The people at lymestrategies are the people using salt/c for more insight.
I also use antiparasitic herbs.
Hope this helps,
Gael
-------------------- 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
Thanks Tincup, I agree this would probably work except this isn't in my chart. She was a good friend of mine and did it as a favor with the shots. So she, of course, didn't charge me but also isn't in my chart either.
Guess it wasn't such a favor afterall, huh? She did write the prescriptions though so that may be charted. I'm going to give it a try when they open back up. Just not sure when that will be.
I just want to do something in the meantime. So far, so good. Usually being off bicillin this long I would have had a relapse. I don't know what to do. I'm really scared to stay off and not do anything for very long.
I've come so far from where I was in 2004 to where I am now. Don't want to travel that road again.
I'm having a lot of muscle pain in my upper arms but that's it. Usually, this is the beginning of a relapse so I probably should do something pretty soon. Anyone know what causes this? My muscles hurt and my arms feel heavy. Is this a lyme sx or coinfection?
Anymore suggestions?? Thanks again Tincup!!
Posts: 495 | From KY USA | Registered: Dec 2004
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Is there anyway she can write you a prescription for a few months and let you administer your own shots? Sometimes doctors let patients do this. My gyno let me administer my birth control myself and gave me refills for the whole year.
Just a thought.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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posted
Thanks Gael, I'm a member at Lymestrategies but haven't really been there. I will have to go on over and do some reading.
Is it necessary to do the antiparasitic herbs when you do the salt/C or do some just do it alone?
LymedOut, I have the meds, I just don't have anyone to give me the shots. No way can I give them to myself and hubby won't. He doesn't want to hurt me and they do hurt a lot. He won't even give me my B12 shots. Thanks for your reply.
Posts: 495 | From KY USA | Registered: Dec 2004
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posted
Do you have a friend or family member that is a nurse?
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Anyone can learn to do this. It would take a very good friend, but they could be instructed in how to do this for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mentioned artemisinin. Did you test/treat for babesia?
With anything you do, I'd explore the full plan around it. Artemisinin is not to be taken alone. It is more fully discussed in the Zhang book and at that site.
Lyme Disease and Rife Machines -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When it looked like I was going to need the shots, I asked around in my church. There were some nurses and one retired nurse who all said they would give them to me.
If you don't have a church, still call up a local church that is known for helping the community and see if they will get you in touch with some nurses in the church so you can ask them to do it. You could offer to pay the nurses also.
Tell your neighbors. There may be a nurse or retired nurse nearby who would do it for you.
Tell the cashier in your grocery store, etc. If you tell enough people, someone will know a nurse you can call and ask to do this.
Have your husband spread the word too among his coworkers, friends, family, etc. that you are looking for a nurse and will pay them.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler, yes I did treat for Babs. I'm just not convinced it's gone. My LLMD treated all coinfections and didn't test but he was sure I had it.
I just can't get rid of this fatigue. It's always been my worst symptom but it is better. Not sure if it's lyme or babs causing it.
Posts: 495 | From KY USA | Registered: Dec 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, babesia can certainly be chronic and require longer treatment than first thought.
Have you been assessed for other TBD and for other chronic stealth infections such as mycoplasma pneumonia or chlamydia pneumonia?
--- In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. . . .
- at link.
==============
Colloidal Silver has been helpful for many. I was nearly in a wheel chair and that is what kept me from it.
Just be sure you get good quality and if you make your own, the water source is vital - otherwise it can turn skin blue/grey. As long as it's good quality, it can be a wonderful help. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks for all your help Keebler. No, I haven't been tested for anything else. I'm not seeing my LLMD anymore either so I'm on my own.
I've been in treatment since Jan/05. That's a long time and I don't want to give up. It's just hard to know what to do at this point.
I just got UNDER OUR SKIN and it's a great film.
Thanks for all the great info.
[ 10-10-2009, 08:56 PM: Message edited by: sapphire101 ]
Posts: 495 | From KY USA | Registered: Dec 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry for the jump. I had deleted that reference to UOS in order to do an update on the guy I had mentioned. While I was copying and pasting this update, you posted.
You might also find a doctor who can assess you for Cpn at www.cpnhelp.org - it's a protocol very similar but the few differences might just be the ticket for you if you have this (as many lyme patients do).
Take care. and good luck. -----------
Update on the Park Ranger, who at the end of this documentary, said it took several years of treatment. ------
As we shot the final scenes in UNDER OUR SKIN [shot before the narration] I was trying to live without antibiotic therapy.
My doctors and I had attempted this before but within a couple of weeks of quitting, each time, I quickly got worse--the memory loss, the feeling of drunkenness, the disorientation, the arthritis in my hands, feet, shoulders, and knees. The fatigue.
The loud ringing in my ears.
The terrible sleeplessness.
The excruciating discomfort and pressure in my face and head from the sound of my own voice as I spoke.
. . . But as Andy Abrahams Wilson and his crew recorded my narration for the film in late 2007 I was making it. I wasn't getting worse. In fact I felt pretty darned good.
Today, in January of 2009 I'm still off antibiotics and I'm doing well. . . .
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Sapphire...
You are right. Having it prescribed by her should be in your chart. Go with that once they reopen. In the meantime...
Thoughts to consider...
I recently asked a GP if they would do these same shots for a friend and they agreed. Their cost would be $21.00 per shot.
I also stopped at a "Dew Drop In" doctor place and they also were quite willing. Their fee was $31.00 per shot.
The nurse there said I could do it myself... but that isn't possible. Like you and hubby feel, that doesn't sound like too much fun.
The nurse also indicated she would show someone how to do it.
Since it costs so much... maybe a couple times going would allow another person going with you to "learn" and you could then have them do it. (I wouldn't push hubby- he has a good reason to not want to do it.)
I don't know if you have insurance... but do ask these places if you do if insurance will cover the cost... or at least part of it.
Another thought... maybe check... or go in person with all your stuff (prescription, meds, etc).... to the local hospice. There are nurses who are compasionate there who might agree to help you out. If they can't help you... then put it on them to help you find someone who will.
If you are in a small town area... sometimes the local volunteer fire department or ambulance squads (Paramedics) are looking for practice "behinds" to puncture for certifications they need. They might agree.. but also maybe not.
You might ask the above people also to help you by telling you where to find a local nurse.
Your local churches may have nurses as members. If you ask the pastor/priest or head of the church, they may be able to help you find a member in good standing to help out. You don't have to belong to the specific church, just give them all a call.
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You said.. "I'm having a lot of muscle pain in my upper arms but that's it. Usually, this is the beginning of a relapse so I probably should do something pretty soon. Anyone know what causes this? My muscles hurt and my arms feel heavy. Is this a lyme sx or coinfection?"
I don't know of any specific literature that would document this.. but in MY experiences I tend to see muscle pain and the feeling like the muscles are numb, achy and/or heavy as a Babesia symptom.
I wouldn't bet the farm on it.. but it is something to consider.
You have worked so hard, learned so much, done so well and come so far since the beginning... I don't want to see you lose any ground. I hope you can keep up with what helps and find something in the meantime to keep you on track.
posted
Thanks so much Tincup. I do have insurance so that isn't an issue. It costs me an arm and a leg but I have it. LOL
You gave me some good things to think about. I never thought about a paramedic. You would think hubby could do it since he was in the medical profession for 29 years. LOL
I think you are right about the muscle pain being babs. I was treated for it but it sounds like I may need more. I'm not sure what I need for that. I can't remember unfortunately.
I do have biaxin and rifampin are either one good for it? Anyone know anything alternative for it? I've been thinking for a long time that I still have it. This muscle pain and heaviness was one of my worst symptoms when I first got sick. I could barely hold anything for very long.
You are right Tincup, I have come so far from the first time I came to this site. I don't want to go back there.
Thanks again for everyone's help.
Connie
Posts: 495 | From KY USA | Registered: Dec 2004
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posted
My husband won't give me shots either...right now, I am doing the heprin injectsions myself, but I want to ask about bicillin shots. I have seen lots of posts about people doing better on that medicine.
Posts: 893 | From Florida | Registered: Dec 2008
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posted
My husband will give me my B-12 shots but he doesn't like to at all. The reason he won't do the bicillin is that they hurt like crazy and have to be given pretty slow.
My dr even hated to give them to me. Every time she would tell me she hated to do that to me. LOL
Posts: 495 | From KY USA | Registered: Dec 2004
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