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#1552 - 05/07/07 12:37 AM
I am new to all this
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Zaviyth
New Researcher
Registered: 12/28/06
Posts: 10
Loc: New York/ near Albany
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Hello, I am new to all this and not very computer literate. I am 55yo, married and an RN. I live in a Messianic community and teach our homeschooled children. I also work in our cafe some. I live in a very rural area, on a farm with cows, goats, chickens and a nice organic garden.I had a tick bite (wood tick) last April. Had 2--3 inch diameter welt around bite but didn't look like bull's eye--I tend to over react to insect bites. People told me wood ticks don't carry lyme so I didn't do anything. Went traveling to west coast for 2 months--felt great the whole time! Had a stressful week on returning home with little sleep--I was waitressing in our cafe and my feet were killing me! Then I got this rash on my neck. Then typical flu symptoms for 3 days and that's when I noticed large bull's eye rash on abdomen--saw my old country doctor--Lyme test very positive--she put me on doxycycline for 3 weeks--felt awful for 2 weeks then started feeling better--felt good for about 1 month then started not feeling "well"--very subtle--hard to tell if symptoms are from 'menopause' or lyme. Saw family doc again and she put me on doxycycline for 4 weeks. Felt somewhat better but then worse after finishing abx. Started researching some but I am not good with the internet. Decided to do some other things--I did silver for 6 weeks, I had a miniFG (clarK) and did that for 2 months, walked 2 miles/day, did a cleansing diet with no dairy, wheat, or sweets for 2 months. I read Stephen Buhner's book and started his core protocol but couldn't tolerate 32capsules/day so stopped that--I think you can get the herbs already mixed up and only have to take 6/day?somewhere? Felt better but not all better but stopped everything as family was visiting and didn't feel that bad etc. Now for last few weeks feel awful--joint pains, malaise, brain fog, depression, etc. I don't have or know of a LLMD. I live in the Albany, NY area. I don't have insurance and can't really afford much. My country doctor doesn't know much--she just looked up what the CDC recommends!! But she is definitely open to alternative therapies and problably would work with me. She also barters with me but each lyme test was $175. I just bought Brian Rosner's new book and it confirmed what I was thinking--that I need to do a variety of different treatments and "pulse" as he says. But choosing what to do is the question. Should I find a LLMD--but how expensive are they? I'd like to find one that would barter with me--I'd be willing to work as an RN, or my husband could do work--he is an excellent fine woodworker. I have many questions like--should I use a rife machine instead of the miniFG--I don't understand all that--and I probably couldn't afford one--a friend gave me the FG. I started to read Rosner's book about rife machines but it scared me. Well, I better stop--any help or suggestions would be greatly appreciated. Zaviyth
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#1568 - 05/08/07 01:04 AM
Re: I am new to all this
[Re: Zaviyth]
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NancyB1943
New Researcher
Registered: 04/10/07
Posts: 4
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Hi, Are you referring to the "Zapper" as described by Hulda Clark? Does it just have one frequency (setting). I can provide you with a 6 (9volt) DC frequency machine for $55 with shipping or a 12volt 12 frequency DC machine for $150. That would be better than the Zapper, but not as good as a rife machine; I was told by a lady who administered the old style, real rife machines that my smaller machines would catch a lot, but probably not all the lymies. That keeps me progressing along with my other modalities. I agree with Bryan that a variety of modalities is the key to advancement towards recovery. Call me at 866-565-8296 if interested. Blessings, Nancy
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#1605 - 05/10/07 01:16 PM
Re: I am new to all this
[Re: NancyB1943]
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Zaviyth
New Researcher
Registered: 12/28/06
Posts: 10
Loc: New York/ near Albany
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I think that's what I have--a miniFG /9 volt but you can set it for a range of frequencies--not sure? I am not ready to buy anything new yet--maybe sometime--thanks for offering. Zaviyth
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#1635 - 05/14/07 10:32 AM
Re: I am new to all this
[Re: Zaviyth]
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Willo
Spirochete Hunter
Registered: 11/10/06
Posts: 81
Loc: South Puget Sound, WA State
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Welcome to Lyme community, Zaviyth! I started participating in forums online in 1997, pretty soon I began to gain a feel for the way things run, the way people use short-hand (or general internet speak).. I think it just takes some observation, then practice to jump into an online forum with ease.
It sounds like you could really use someone on your medical team who knows what they are doing! I take it, since you said your doc only looks at the CDC, that you already know the CDC uses it's information for surveillance purposes only (it says right on the site for doctors to not use those guidelines as a guide to diagnose Lyme disease in patients!) ..so it does sound like you could use an LLMD on your team.
Since you admit you're new to Lyme I suggest reading the book Confronting Lyme Disease because it has a great explanation of the differences between the old treatment protocol (that is used by the Infectious Diseases Society of America) and the new treatment protocol (can be found on the ilads website). The book explains why the bacteria are so sneaky and why there's a big political fight over how to "correctly" treat the diseases right now.. that book helped me understand a lot.
Among other things, I would suggest you educate yourself as much as you can about the different aspects of Lyme and its co-infections.. Linda (LymeAngl/Angls4hope on this board) posts a lot of articles that she finds about Lyme and all things related to it.
There's a website http://www.lymeinfo.net/ where you can read through bunches of articles on Lyme. They also have a yahoo email group where they send out articles nearly every day that mention Lyme disease.
A few other sites that would be helpful:
http://lymenet.org/ (LymeNet's main website)
http://lymediseaseassociation.org/ (the LDA's website)
http://www.hopetoheallyme.com/ (Hope To Heal Lyme)
http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html (a collection of a LOT of links on Lyme and associated diseases..)
http://www.caringbridge.org/ma/annielyme/ (a personal site with good info and great links)
http://butyoudontlooksick.com/ (excellent site for chronically ill people by a girl who has lupus, look for "The Spoon Theory" especially)
http://flash.lymenet.org/ubb/Forum1/HTML/013670.html (50 Q's & A's on Lyme)
http://www.openeyepictures.com/underourskin/index.html (This is a documentary coming out, hopefully soon, about Lyme disease and co-infections.. if you can watch the trailer to the movie it's well worth it!)
http://www.igenex.com/ (one of the best tick-bourne research labs in the USA, located in CA - has a page that explains the western blot test)
http://www.lymebusters.com/ (personal stories and general info)
http://www.lymeout.org/ (retreats for those with Lyme)
There are brilliant books out there these days. You already have Buhner's, a good one.. and I've already suggested finding (maybe in your library?) Confronting Lyme Disease. Have you tried Bryan Rosner's Rife book?
Some other things that helps me best:
I read both Dr Burrascano's and ILADS' treatment guidelines regularly. They can both be found here: http://ilads.org/guidelines.html
I keep a blog on http://lymeblog.com/ and I also have a home-made symptom chart. It's a bit tedious to keep at the chart every day, but it's a great tool for my LLMD to judge how I'm responding to treatment and has helped me map out my cycles of herxes. You can make your own chart easily, write a list of your prominent symptoms and enter in for each day of the month how badly each symptom has affected you.
I've heard of many different ways to rate symptom charts, my own personal technique is to use the number scale but to only go up through 4. (0 = no symptoms, 4 = symptom is extremely bad -- for sleeping if I have a good night's sleep I put 0, but sometimes I don't sleep at all, so it would be marked as a 4. Hope that makes sense. Others use 1-10 or 1-5)
Here are some places that list symptoms so making the chart is easier than trying to think of everything all at once on your own..
http://www.lymeinfo.net/medical/LDSymptoms.pdf
http://www.lymediseaseassociation.org/SymptomList.doc
http://www.medicinenet.com/lyme_disease/page2.htm
http://www.canlyme.com/patsymptoms.html
http://www.geocities.com/ladyjewel218/Symptoms.html
Another thing that helps me is to learn my enemy. I try to keep my knowledge of the spirochetes and other co-infections as up to date as I can because there is so much to learn, the spirochetes are smart lil buggers! They can "mate" and exchange informtation.. therefore they mutate(!), have no cell wall (which is what regular antibiotics go for, cell walls), build cysts around them, leave the blood stream and "burrow" into tissues and organs.. I'm really amazed at the resilience they show. These are just some of the reasons that the bacteria are so hard to get rid of.
In my experience LLMDs do not talk about Rife machines (nor have I heard one talk about coloidal silver) as a part of the therapies they offer.. but I've also found that when you're working with a good doctor, he or she will respect your personal choices.
I think the best professional you could have by your side is an LLMD, but I have to warn that it will probably be a hard search for the right one and when you do find one, it may be expensive -- more and more LLMDs these days are not taking private insurance. Some people can only afford to see an LLMD once in a while and then they have the LLMD talk to their PCP (primary care physician) to help the PCP treat them. That may be an option you may want to look at if your primary care is open to learning, but I do believe that a good LLMD is an invaluable direct part of the team.
The best way to learn about the LLMDs around you is to talk to people in your state and the states surrounding you, and ask if anyone recommends any LLMD in particular. See if they have good things to say about the way the MD personally treats patients, the way the MD treats Lyme and other TBIs..
A good way to request a doctor referal that will reach many (the more the merrier!) is to go to http://flash.lymenet.org/ -- it's easy to ask on the boards for some help. Sign up to be able to participate (if you haven't already) and click on the "seeking a doctor" forum -- introduce yourself, tell the people there what you told us here.. when they read where you live some people might be able to give you the name of a good LLMD in your area.
Some people travel out of state to find a good doctor, so you will probably get suggestions from the states around you as well as your own.
You can find out how well they think of the doc, does the doc listen, do they make themselves available for emergencies, do they use email, etc.. and other helpful info.
Hope this is some help to you, good luck! I hope you feel better soon.
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#1762 - 06/06/07 02:36 AM
Re: I am new to all this
[Re: Willo]
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Zaviyth
New Researcher
Registered: 12/28/06
Posts: 10
Loc: New York/ near Albany
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Thank you so much for responding. I found an LLMD in Albany but he is way too expensive--$2650 for the 1st visit!! I went back to my local doc and she is very nice. She doesn't know much about lyme but I gave her both Buhner's and Rosner's books and some of Burrascano's stuff I printed. I mentioned rife machines to her and she was very positive- she talked to me for 45 min. and only charged $25. Heaven sent I think. She is totally willing to support me in whatever method I choose. I've been researching on line as much as I can--but I am still trying to maintain my busy schedule so sometimes many days go by before I am able to get on line again and of course some days I am just too tired! I've found a rife machine and I came up with a plan using Rosner's book mostly. Thank you so so much for all the info. Zaviyth
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#1763 - 06/06/07 04:43 AM
Re: I am new to all this
[Re: Zaviyth]
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Rich_skiweasel7
Forum Veteran
Registered: 12/29/06
Posts: 178
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Hi Zaviyth,
$2650 is too much!!! Does that include treatment and a stay in a hospital? I pay our LLMD $195 for 30 minutes and I think I paid around $300 for the first appointment (1 hour and 30 minutes). Our insurance reimburses us a partial amount.
I would keep looking for a LLMD in your area. It is great that your MD will work with you, but it is best to tap some other knowledge source. More information is better. Try this site for doctor referrals:
http://www.lymediseaseassociation.org/Doctor_Referrals.html
Take care,
Rich (skiweasel7)
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#1767 - 06/07/07 06:02 PM
Re: I am new to all this
[Re: Rich_skiweasel7]
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Zaviyth
New Researcher
Registered: 12/28/06
Posts: 10
Loc: New York/ near Albany
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Hi Rich, His first visit is $650 and the $2000 is for all the lab work he requires and then it is $175 each subsequent visit plus lab work every 2 weeks and they don't take insurance!!!!! That was the site I found the LLMD at. No other ones came up for the Albany, NY area. I'll keep looking. Thanks Zaviyth
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#1789 - 06/14/07 05:06 AM
Re: I am new to all this
[Re: Zaviyth]
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Willo
Spirochete Hunter
Registered: 11/10/06
Posts: 81
Loc: South Puget Sound, WA State
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(I'm sorry I'm so late in answering this! Loooong story that I'll whine about in my own thread)
You said:
His first visit is $650 and the $2000 is for all the lab work he requires and then it is $175 each subsequent visit plus lab work every 2 weeks and they don't take insurance!!!!!
That's ridiculous! I mean I know that this stuff is expensive, but I've never heard of that kind of a price on a first visit. Have you tried to tap the people at LymeNet's Flash Discussion? They might know other LLMDs and have personal testimonies to how happy they are with their doctor or the techniques the doctor uses.. It might be better to try to search through more channels.. these days new LLMDs (or at least "Lyme Friendly" MDs) are popping up all the time, but the best way to know if they're legit is to talk to someone who has seen them or sees them.
And you have to try to put yourself in an LLMD's shoes.. if they don't take insurance they're less at risk for an investigation started. They're protecting themselves by doing that, plus they're tired of dealing with insurance companies that give -them- the run around!
I won't lie -- being sick costs lots of money, especially for those among us with no insurance, but it's a truth for everyone. I had to travel to Canada to see my LLMD in 2001 (among other travel expenses) I had to save up hundreds (not thousands, tho!) which took me a long time (almost 2 years) just for IGeneX lab tests. Thankfully later that year (2003) with a positive western blot I got onto SSI and had medicaid to help with things like meds, labs, MD co-pays. I still pay for an awful lot out of pocket tho: suppliments, herbs, detox regimens, vitamins, probiotics, gluten free products, accunpuncture, etc.. and every month my health regimen costs more than I make. Thank the Gods for my parents.
You could also look at the option of seeing an LLMD once or twice to then confer with a hometown doctor (remember, you're never stuck with one doctor.. you're the "employer" as it were and an MD should be "fired" when they mistreat you) as to how to treat you, what tests to run, etc.. I know a lot of LLMDs who do just that. An MD of mine used to confer with Dr Burrascano about me.
And the cold hard truth is that you might have to travel to see a good doctor. There are all kinds of programmes to help you get to doctors (there's something called Angel Flights, if I remember the name correctly.. they fly people for free with medical need to see doctors around the country) and there are gov't programmes to help with disability. But this is your life (read: your quality of life) you're dealing with.. you want your life in the right hands. It took me 7 years to find someone to continuously treat me, until last year I was bumped from one doctor to the next. It's a hard truth, but you are your own best advocate. In leiu of finding an LLMD to treat you, learn learn learn all you can about what you are fighting.
And you always have us to come and talk with, vent to, or whatever else you may need. 
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#1865 - 06/19/07 07:02 AM
Re: I am new to all this
[Re: Willo]
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Zaviyth
New Researcher
Registered: 12/28/06
Posts: 10
Loc: New York/ near Albany
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Thanks for the info. I am constantly reading, searching etc. Has anyone used homeopathy? I saw the new book out. Zaviyth
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