oops! Lymetutu
Best of luck in your treatment.
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oops!
Lymetutu
Mel
Streptococcus L forms of Lyme ,this living inside cells ,are septible on minocycline and other antibiotics only make hiding lyme into cells and separate them from actions of immune system and this way lowering You`rs antibodies without feeling You better on longer distance ,cause doxy have antiinflammatory actions and help you in a short time.
http://lassesen.com/cfids/protocols.htm
Here's TREEPATROL's and tincup's combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html
Did you have a rash or bulls-eye since you were tested for lyme so it's a recent bite?
Yes, abx are a must!
Read BARRASCANO's 32 page report; better yet, print it off for your use now & later.
As to the MP, go to their board: www.marshallprotocol.com and read all about it. Read the people's progress reports who have SIMILAR illnesses to yours. Don't RUSH into things without knowing everything you possibly can.
Go to Aussie Barb's "easy finder" I think it was called of the answers given by Trevor Marshall, a researcher, NOT A MD, board staff, & members! He developed this for his sarcoidosis, and it's now being used for lyme patients.
The MP is NOT FDA approved, but is being used more by MDs all over the world.
The MP board is strictly censored by Trevor & the new administrator, Reenie, who wouldn't reveal her name prior to my leaving the MP board after 9 months when it was started.
I read the daily digest there for 9 months. I chose NOT to go that route. I have been misdx for 34 years.
My husband was very concerned about it not being FDA aproved, and that we were guinea pigs. (He lost a 3 yr. old daughter to a smallpox shot in early 60's....1 of those statistics people rarely hear about.)
Be prepared for a 2-4 years on the MP. Each person is different depending on the length of time they have had lyme/sarcoidosis.
They let you read the 1st of 3 steps there, but steps 2 & 3 are NOT disclosed until you get that far.
I have many feelings on that one ... if you're going to commit your life to MP, then you deserve to be able to read ALL the specific details about it and know the doses of steps 2 & 3.
Trevor has quite a temper and it shows very often on the board. He's lost many valuable former moderators due to it since it began 7-04!
So bottom line, do your homework. Go with what YOUR GUT says; not what anyone else says ok.
I have gained 1 valuable thing from MP board, knowing about NOIR sunglasses. Read about these if you've had super-sensitive eyes to lights, glare, & reflections. You finally know why...it was your lyme disease that no one dx earlier! I have the 2% & 10% sunglasses...love them.
Best wishes with whatever you decide.
bettyg, Iowa
quote:
Originally posted by Jellybelly:
Here are the results to a poll on various protcols.
http://lassesen.com/cfids/protocols.htm
So, a poll on what worked for CFIDS might be very misleading for people with Lyme disease. You always have to take into account what infections and coi-infections you are working with.Then you treat them with the most effective protocol for that illness.
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Sonoma County Lyme Support
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Chronic Fatigue affects nearly every autoimmune related illness, including Lyme. By far the majority of people who are on the MP aren't originally diagnosed with CFS, but rather Sarcs.
There have recently been a number of people who started the MP, mainly CFS and diagnosed Lyme. Those poll numbers do include results from all of these groups not just CFS with no other official diagnosis.
I thought I had FM/CFS but now after nearly 25 years realize it was likely Lyme all along. I tried the MP and will not try it again UNLESS I am at deaths door and have no other options. There are to many unknowns and we are getting all of these promises from a man who is not an MD but a researcher, and up until just recently his research had not much to do with medicine at all. Medicine is not the reason for the DR. in front of his name.
[This message has been edited by Jellybelly (edited 20 May 2005).]
quote:
Originally posted by Tnagel:
I have apt. with a Dr in Ny but not for three weeks should I wait that long?
Make sure this doctor comes recommended by SEVERAL happy, satisfied customers!! Don't just get a referral and assume this dr will be good.
And don't go by a rash in any instance. MANY [at least 40%] never had a rash. I'm one of them.
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oops!
Lymetutu
You've gotten some good advice. The sooner you get on the right treatment the better as I'm sure you know.
Treating symptoms is okay as long as it doesn't delay treating the source of the problem.
It can be very confusing and overwhelming. Keep reading and asking for help.
Good luck.
Minocycline also has anti-inflammatory effects like doxycycline. However, these effects seem to be pretty mild in both cases.
Streptococcus is the genus name of a particular genus of bacteria. Coccal/coccoid forms or cocci are not the same thing - these terms refer to any bacteria (of any genus/species) which have a spherical form (morphology).
The idea that intracellular wall-defecient coccal forms of borrelia uniformly constitute a large amount of the infection mass in lyme borreliosis could be correct, but it is not supported by any direct observations whatsoever. It should be understood as a hypothesis/theory. Personally I think it is a fascinating one - but like other theories it seems to clash with certain observations in a way that I find baffling. For example, contrary to what you assert, many people become well using beta-lactam antibiotics and do not relapse (although many do relapse).
Eric
[This message has been edited by hodologica (edited 22 May 2005).]
I'd contact the lyme doctor's office you've been referred to and tell them you have a positive diagnosis. Ask what you should do while you wait for your appointment.
Share your concern about delaying proper treatment and ask to be put on the cancellation list so you can get in sooner.
Just my opinion. Do keep us posted. Good luck.
My symptoms did change.
If you're with a lyme specialist with a strong and long track record he/she will help you optimize abx treatment while minimizing any if at all downsides.
Keep researching, reading, asking ?s and getting competent 2nd opinions. You'll avoid pitfalls this way too.
While abx do have possible risks (yeast infections, nausea, allergic reaction, etc), not properly treating a potentially crippling infection is by far a bigger risk.
[This message has been edited by DolphinLady (edited 22 May 2005).]
I wouldn't wait for any more testing.
I get 2nd opinions when I'm not sure what to do. I avoid this by doing lots of research.
[This message has been edited by DolphinLady (edited 22 May 2005).]
My feeling is that if you are newly-infected, a long course of high dose abx would be preferable to MP.
On the other hand, if you are newly-diagnosed, but have a long-term infection (like me), MP is definitely something to consider. I did the high dose abx and they did nothing for me.
Whatever you do, get treated right away, and do not let a doc give you 3 weeks of low dose amoxicillin and pronounce you "cured." Not possible.
Good luck and feel free to email me.