posted
I am newly diagnosed with Lymes, my Dr wants to put me on the Marshal protocal but I have normal-on the low bllod pressure and have series concerns about taking Benicar, it just feels funny to me.My Igg are neg, but my IGM are positive. I am very functioning I just have chemical sensitivities and some muscle tightness, shouldn't I try antibitotics first?
Posts: 50 | From washington dc | Registered: May 2005
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posted
Yes. Antibiotics, particularly in early Lyme, have a very good track record and the medical literature to back it up. Get treated with antibiotics -- that is, afterall, what kills bacteria.
Best of luck in your treatment.
Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Abx treatment is the first line of treatment for most people. They move on to other treatments if abx isn't effective. Your gut seems to be telling to go with the abx first. I believe it is correct.
posted
U have lucky that You found doctor who is going to try treat You with MP. I am searching doc for 6 month now without results. I was twice in a hospital and still have high antibodies levels. Antibiotics won`t help You cause they wotk on cell wall killing it (beta-lactams) - cephalosporins and penicyllins. Doxycycline has bad spectrum against streptococus and this are involved in this diseases so minocycline in MP is the best.
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.
Posts: 641 | From Wroclaw, Poland | Registered: Mar 2004
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Here are the results to a poll on various protcols. The protocols that you are asking about are included in this poll. Basically rates peoples results using a # of protocols and which ones appear to work the best. Might help you make a decision.
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.
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
Posts: 1 | From US | Registered: Aug 2015
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
I looked at that poll. It is a poll for people with CFIDS. while I know some people believe everyone with CFIDS has Lyme, I think it is likely that CFIDS has multiple causes.
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.
posted
hi tnagel --- ask your doc how many folks he has treated with the mp, how sick they were and how they have fared...i was on it for 7 months and was a non-responder so am back on regular antibiotics.....i think if you are fairly healthy to start with it might work but a few months of antibiotics first (unless you absolutely can't tolerate them) would probably be a good idea...in my experience, those who do well on the mp have done antbx first and are not very sick anymore... good luck, deb
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Posts: 122 | From richmond, ca, usa | Registered: Feb 2004
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Riversinger,
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).]
posted
Thanks fro all your replies, this is really confusing and no I never had a rash, I had symptoms 10yrs ago after returning from Pakistan but mostly aches and sleep loss, then about two years ago I become sensitive to chemicals, had a very congested chest and felt strange tired and a little out of it, I have seen about 10 Dr's who keep putting me on sleeping pills, actually flexeral(sp?) made me feel better for awhile.i sw this dr once and he thinks just becuse my igg is neg I still have had it for awhile.I am in DC and would like a second opinion but I am having trouble finding another dr. I have apt. with a Dr in Ny but not for three weeks should I wait that long?
Posts: 50 | From washington dc | Registered: May 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
go to support groups on the left and contact one close to you, ask for a doctor referral
Posts: 2001 | From NJ | Registered: Mar 2005
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posted
Dolphinlady, I cannot get into see the refferred dr until two weeks should I wait with these symptoms or should I just start treatment with another DR. I have had these symptomes for about one year but just got diagnosed two weeks ago? Thanks
Posts: 50 | From washington dc | Registered: May 2005
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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.
Posts: 925 | From California | Registered: Sep 2004
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posted
Dolphinlady, did you get treated at your first symptoms? Did you symptoms change? Is there a possibility that antibiotics can make things worse in the long run?I will call the cr and see if I can get on the list, my Igg was neg but my IGM was positive which is confusing since I probably have had it for a while.
Posts: 50 | From washington dc | Registered: May 2005
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posted
I didn't get treated/diagnosed right away, HUGE mistake!
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).]
Posts: 925 | From California | Registered: Sep 2004
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posted
So its better to have second oponions and enough tests to know what the situation is before starting a treatment? I feel like just having my regular DR prescribe antibiotice while I am waiting to see my other DR but don't wnat to potentila mess up tests or future diagnoses. Do you always get a second oponion?
Posts: 50 | From washington dc | Registered: May 2005
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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.
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