posted
Not sure if I can post the proposed protocol even if I don't mention the Drs name.
Am I allowed to? If not, can anyone who has much experience with Lyme protocols, whether self or I know a few people on here have worked with many people on here helping them out, could you please PM me. Want to make sure the drugs/dosages haven't been reported to cause issues.
Posts: 52 | From USA | Registered: Feb 2013
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posted
Was that a hint? I havent been active enough on here since I haven't actually done any treatment I don't have much to add yet so I don't know who knows their stuff and who doesn't!
Posts: 52 | From USA | Registered: Feb 2013
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posted
If you're able to go to a support group in your area, that can be a helpful place, as well, to discuss treatments.
Support groups are listed at the left here. Click on United States, then your state.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I'm not nearly as sick as other Lyme patients I actually think it would freak me out more so than help me.
Posts: 52 | From USA | Registered: Feb 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your support methods must be in place. Here's where to begin:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
Then, considering your Rx Treatment Plan . . . .
Your treatment plan should look something like this - although each LLMD has their own methods and each patient requires an individualized approach, still, this is a basic measure:
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
[this last link is not going through right now. Go to pages 27 - 30 in the original link above.]
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, sent you a PM!
Posts: 52 | From USA | Registered: Feb 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I replied as best I could but much shorter reply than I think you wanted or would be nice - as I'm just not able to do that much. I'm also not expert in Rx, never able to do more than 2 months, Rx, myself.
Forgot to say, Being on Doxycycline:
STAY OUT OF THE SUN
DO NOT LIE DOWN FOR (? a full hour, or a half ?) after taking it. It can be caustic to the esophagus if you do so.
DO NOT TAKE WITH HIGH MINERAL FOODS or supplements, keep them separate.
Others can add to that. Wish I could be more thorough but hopefully bits and pieces still offer some help.
Best of luck during this intense time. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
quote:Originally posted by stiffyoungman: I'm not nearly as sick as other Lyme patients I actually think it would freak me out more so than help me.
I don't know why, but that hurt my feelings for some reason.
posted
Well, it's scary to see others with the same illness being VERY ill.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Indeed, I understand. I have felt the same before and still realize how it can affect me.
This is very frightening, at any stage.
I think it's best to protect oneself from such sorrow. We don't have the endocrine capacity to take in others' physcial conditions and also our brains just naturally wonder and we are shocked by it all.
Understandable.
Still, it's good to connect with the leader of the support group and establish as least some kind of phone connection with them or with someone whose personality could be a good match for where you are at this point.
If our bodies, emotions, brains or psyches are just not able to be very resistent, it's best to be protective and avoid really tough situations.
Also, each group has a different "personality" - when first dx with CFS I could not stand to go to the support meetings as -- my interpretation was that there was just so much sorrow and complaining - - understandable, of course.
The group I first found was so full of sorrow. And they needed a place to air that, to fully be able to EXclaim and be heard. But it was just too much for me. I was as ill as the worst of them and saw no way out since, at that time, all they did was voice their feelings.
But I was too weak to take that on. They needed some well people who were not also so ill.
I knew I had diminished capaicity emotionally. I was barely able to stay afloat myself. I needed a group that would be just a bit of sharing & validation - and then turn that around to also instruct on how we could bet better.
That was years ago and now that I know it's lyme, I know there is a lyme support group that has a clear operating routine. Share a bit, then learn.
I can't go but do keep in touch with their agendas. They have fabulous guest speakers.
If one support group is not a good fit, you might explore another. And they can vary at times depending on the personalities there and their load & coping skills.
Each group has a different way of operating but if everyone is very ill and no one can say "well, here are some ways to work around this or that" . . . or offer a light out of the tunnel, it can be counterproductive and even cause more emotional trauma.
Clearly, though, those who are hurting do need a place to be heard. No one else will listen. No one. So where do they go? And a time clock is not condusive to baring one's soul of the degree of medical abuse and confusion that goes with lyme.
It can be a tricky mix. Some groups have "splinter" groups to meet different needs.
If you can see the agenda of a group before a meeting, that can give you an idea of what you might learn.
Sometimes, there are very good guest speakers. Do try to attend those if you can. Look up beforehand to get to know more about them, though, so as to be sure it would be worth your while.
At least a phone connection to the leader: You could avoid some pitfalls by being able to ask a few key questions. -
[ 04-18-2013, 02:25 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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