posted
Thought I'd leave an update on Alex as there have been some developments this week.
1) Local family duck was on board, but now has done a 180-degree turn. After sputum cultures have revealed pseudomonas and serratia, he has gotten cold feet. All he talks about is treating her in short stints if abnormal C-reactive protein. Not even sure if he's open to discussing her with a LLMD.
2) Her WBC count has gone up to 12,000.
We still have not found a doctor as we are caught in a catch-22. Unless someone can hit a home run, I don't think it would be prudent to travel. I don't see any other way around a doctor coming to her.
She's no longer on abx., so I'm trying to figure out what would be the best thing to do why we are awaiting a new doctor.
We sent all her medical records to a program called "Undiagnosed Diseases Program" at the NIH. It will take about 4-6 weeks to find out if they will accept her.
So, while we're waiting... Colloidal silver? If so, which kind? Buhner herbs? Rifing? Salt/C protocol or just Vitamin C? Marshall Protocol?
Any suggestions?
Can anyone ask their LLMD's their thoughts or suggestions????
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I would try the Buhner protocol, or the Cowden protocol. Buhner is a lot cheaper if cost is an issue. It's powerful stuff, so go slow. You would need to get a hold of the book "Healing Lyme" by Stephen Buhner. Cowden is $$$.
Also consider a phone consult with Dr Zhang out of NY re: Lyme and co. Also an herbal protol. wwww.hepapro.com.
Good luck!
Posts: 3528 | From US | Registered: Apr 2007
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Hi Mike,
My LLMD is a huge advocate of colloidal silver and even takes it daily himself.
I started with 2-4 teaspoons a day, then 2-4 TABLESPOONS a day and now I've ramped up to 2-4 OUNCES a day. He said I could make my way up to 8 oz a day.
I'm herxing quite a bit on the 2-4 ounces days so I mix it up depending on what I have to accomplish that day.
I like the idea that this stuff hits everything. It's like one-stop shopping. Here are some good links to research but I think this brand is the way to go when I inquired with the Lymenet board.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
Unregistered
posted
hi mike,
thanks for the latest update on alex; and what else has been done since the last time we talked in detail.
i had an idea, and sent someone an email about your post above and ALEX'S VIDEO. i copied you on it, and if this llmd could help you, to email you directly at your home email!!!
let's keep our fingers crossed ok for some advise/assistance for alex.
i take it oprah's staff member hasn't talked to your sister since the 2nd time 1 month + ago...right!
Praying for Alex, her family, and her relentless Uncle Mike giving everything he has to get her out of her paralyzed state and into REMISSION so she can join her 14 yr. old twin sister again!! **********************************************
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1Bitten2XShy
Unregistered
posted
My WBC count has been 12,000 and up to 15,000 for almost the entire period of treating Lyme and Co's. LLMD cannot figure out why, except the obvious of an infection somewhere we are not toughing.
posted
im a big fan of the Buhner herbs though ive used some of Cowdens too. whatever you use take it slow. I have a friend doing a mixture of colloidal silver, cumander and cat s claw, a little bit of each protocol and she s doing really well so whatever works,they are all good ideas!
Posts: 45 | From PA | Registered: May 2008
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bettyg
Unregistered
posted
hi mike,
i don't think i told you anywhere this, but yesterday when i made my 3 dc congress calls, I ASKED THE 3RD PHONE NO. STAFF PERSON THIS...
i had sent 2 you tube videos in my 1st email to them last weekend; HAS YOUR DEDICATED STAFF PERSON ASSIGNED OUR LYME DISEASE BILLS ... HAVE THEY SEEN THEM?
EDITED: 1st video was ALEX'S;
2nd was UNDER OUR SKIN...forgot to add that!
YES, THIS PERSON GOT THE PERSON I HAD DAY BEFORE, AND SHE SHOWED STAFF PERSON THE 2 VIDEOS and she did get my lengthy email last weekend!
to me, finally progress!!!! ******************************
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am going to agree with Painted. She said...
"I wouldn't do anything without medical supervision."
I certainly wouldn't try anything as sick as she has been. And most for surely not a combo of stuff. My suggestion is wait for medical advise.... and then go SLOW.
Remember.. herxes can and DO kill people. I am serious here.
That is my advise... wait for medical supervision.
designated senate stff rep VIEWED ALEX'S VIDEO and UNDER OUR SKIN this week!
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daise
Unregistered
posted
Hi Uncle Mike,
Have specialists been out to the house, such as a really good gastroenterologist, a really good internist and so forth?
Does she have a nurse case manager with the insurance company? They're free, and they are another avenue to explore.
The nurse could come out and see Alex, for her/his self and maybe set up arrangements for the conventional specialists, while you're waiting and hoping for an LLMD.
I'm wondering if they might be able to relieve her of some of her condition. They could draw her blood for all sorts of physiologic tests.
posted
Mike, Could she fly with a nurse on board say like Angel Flights??
I'm guessing she's still on respirator?
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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I've read that Alex had a positive test for Bartonella. Are there other illnesses that she has had a positive test?
Peggy
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I just have to add my two cents about the alternative therapies I've tried.
Collidol silver: didn't see results.
Rife machine: didn't see results.
I did do the Salt/C protocol. I actually have low blood pressure associated with dysautonomia, and I am young, so I wasn't too worried about the excess salt making my blood pressure raise. I am afraid to recommend it too much in case that much salt could hurt someone, but, I had good results from this.
I don't know if it is just because salt is an electrolyte, and gives some fatigued people energy, or if it really did help with my lyme. BUT, i heard it kills babesia, and after I started it, I believe I was herxing. I was having night sweats and cognitive issues. So I take that to believe it was helping by killing things. My babesia tests had all come back negative at that point, but when I started having those symptoms on the salt/C, I was like, wow, this is significant. Then, I retested for babesia and it came back positive! So I immediately went on Mepron from my doc, so I don't know if the salt/C route would have cured it on it's own or not. BUT, I can tell you it gave me a herx. Do it at your own risk. Also, I made my own salt caps from sea salt, because I didn't know if table salt was bad in such high dosages....I figured the more natural, the better.
All that to say, I hope your niece gets some REAL treatment...I have seen results from traditional meds, and I pretty much don't waste my money on alternative treatments.
Posts: 4590 | From Midwest | Registered: Jun 2008
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daise
Unregistered
posted
Mike ... please ... no C-salt nor anything like it ... please, no!
This suggestion by at least 2 people is flat-out irresponsible and in her desperate condition--no, no, no. Please.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
The originator of this post ASKED about salt/C, along with rife, silver, etc.....I am not saying his niece should do it, I even said I was hesitant to recommend it, but I am giving my honest experiences as someone who has done the protocol. He shouldn't have asked if he didn't want to know people's experiences.
AND, at the bottom, I said all that said, I think she should go on TRADITIONAL MEDS! Even those aren't guaranteed to work, but it is, in my opinion, her best bet. I would strongly encourage testing for coinfections. Even if she doesn't test positive, never rule them out. (That is why I did Salt/C....because i had no proof I had babs and I was desperate). At any rate, Mike, I would do anything I could to make sure you see a knowledgable doctor who sees lyme and tick borne diseases for what they truly are, and treats them with prescription drugs! Don't let someone convince you she doesn't need medical treatment, though I don't think you will. To reiterate, make sure she gets the meds she needs, and I wouldn't recommend trying to treat with alternative meds.
Posts: 4590 | From Midwest | Registered: Jun 2008
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Mike & Gail,
Angel Flight recipients must be able to walk. Perhaps there are other organizations that would help in this situation.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
12,000 isn't THAT high. 10,500 or so is usually normal.
I've done Cowden and also do some of Buhner herbs. I like them both, but in my opinion, I've gotten more from Buhner herbs as I noticed more of a herx with Buhner. But what helps for one person doesn't work for another necessarily.
She's in my thoughts and prayers.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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