Kudzuslipper
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Member # 31915
posted
Is "the" Dr. S. at Mass General still a bad guy? Has any of his research in the past years provided any answers?
I have a colleague who's dad is a big wig where I live, he has suggested I see Dr. S. luckily it was through email and they couldn't see my GASP response.
But wondering if after the "war" he may have discovered something valuable... what if I really do have RA or Fibro?
Should I run away? what do I tell my colleague who thinks they can get me in quickly? GASP AGAIN.
Posts: 1728 | From USA | Registered: May 2011
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Rumigirl
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posted
RA and "Fibro" are FROM Lyme and co, thank you very much! Don't go near this guy! You can politely thank your colleague, and say that you have an appt with someone else (whether or not you do yet). And find the best LLMD you can---which sure as heck isn't this guy!
BTW, I've been on the receiving end of "false positives" and "Post-Lyme Autoimmune Disease." And no treatment for active infections that were causing me so much pain that I wanted to end it all. It ain't pretty!
Going to this guy would ensure a lifetime of suffering with "Post-Lyme Syndrome."
Posts: 3771 | From around | Registered: Mar 2008
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posted
He is practically the architect behind most of the issues we have today with the medical establishment.
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Ellen101
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posted
I sent you a PM
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Kudzuslipper
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posted
Thanks all. I just had to hear what I already knew. People do change their minds and was wondering if he was one.
I know my colleague, was trying to help.
I do see an LLMD, I am a bit frustrated after a year all and all of feeling worse than I did before, with a few bright moments where i say I feel better than I ever did, but do I really just feel better than the month before.
do you ever go back to thinking you are not on the right track?
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nefferdun
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posted
To answer your first question read the book, Cure Unknown by Pam Weintraub (I think that is spelled right).
You will have multiple infections, not just one. "Lyme" refers to borrelia which is just one infection. That is why this whole argument of getting well in weeks is ridiculous. If you were infected with malaria, syphilis, leprosy and heaven knows what else, do you think you would be well in two weeks of one antibiotic - or even a year?
You have to address all the infections in all of their forms. It takes different antibiotics, anti-malarials and anti-parasite drugs. It takes time.
If you are not progressing then you probably aren't on the right track. You are probably using the wrong drug; something that does not hit what is dominate. You need to reevaluate your symptoms to figure out what you are missing.
There are many things that can cause Fibro and RA symptoms. Protomyxzoa Rheumatica is one. Look into it. Does your voice go hoarse now and then, dry cough, fatigue?
If it is auto immune (which can be brought on by the infections) Low Dose Naltrexone will help stop the attack.
Heavy metals can cause fibro. Smoking brings it on because it is full of heavy metals. You must clean up your act if you expect to every recover.
Get checked for methyl cycle mutations. This will help you nutritionally so your body has a fighting chance. Otherwise everything is just a stab in the dark. You hear this helped someone else so you try it. You are a unique individual and the methyl tests confirm this and treat you as such. It is individualized medicine. Many mutations contribute to auto immune diseases. They can be bypassed.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
nefferdun - are there specific treatments for the Protomyxzoa Rheumatica that you mentioned?
Posts: 8981 | From Illinois | Registered: May 2006
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AuntyLynn
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posted
I agree with Rumigirl. Thank your colleague for his help and concern, but tell him you have an appointment with someone you have heard is really good too.
Ever test for coinfections? It's my impression that Babesia can cause joint and muscle pain.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Lyme can cause hoarseness too. And Gluten can cause "fibro" symptoms.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
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posted
I think RA and fibro ARE lyme. Remember Under Our Skin? Imagine if lyme was actually at the root of these and many more illnesses...We wouldn't need these docs. We would need more lyme docs. Hmmmm.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Razzle
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posted
Magnesium deficiency and hypothyroid also need to be ruled out before accepting a "Fibro" diagnosis... My "Fibro" was magnesium deficiency (probably caused by Lyme)...the deficiency caused the tender points, muscle pains, sleep problems, etc. Magnesium stopped the muscle pain almost immediately.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
After 6 years of antibiotic treatment, which I stopped several years ago, I strongly agree with the "post Lyme" diagnosis for some. The Lyme infection can trigger autoimmunity in genetically susceptible individuals (with the HLA-FR4 genetic type, for instance). It has not been established by research as yet whether this autoimmunity is residual post-infection, or a sign of continuing infection.
I put my bet on the latter, and did heavy antibiotics for a long time. Like many on here, I was hostile and afraid of the "other side." Once I got through the withdrawal period (yes, there is one, w/ intense symptoms while trying to get off antibiotics, which my LLMD kept telling me was relapse but it was actually withdrawal) I felt better in some ways. But I was left with leaky gut and food intolerances that have made life difficult in the last few years.
My daughter and I both have "systmic lupus" diagnoses at this point, with blood tests and skin biopsy confirming. I don't care what they call it. I do everything I can to live with symptoms and minimize harm to myself. Accepting some level of problems has been important to my health.
I strongly believe that antibiotics, especially the tetracycline family, can worsen autoimmune illness. Both my daughter and myself had sky high ANA's on tetracycline and my daughter had autoimmune psychosis on it. Yes, it could be a "herx," but it could also be a well-known side effect of that med family. Another mystery.
Both sides of the Lyme wars have their strict orthodoxies. My feeling is that there are a lot of mysteries here, and hearing from all points of view is most helpful.
At least Steere recognizes that people are sick "post-Lyme," and not somaticizing or malingering or whatever.
Ellen101
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Member # 35432
posted
Razzle I was wondering how much and the type of magnesium you are using. Muscle/nerve pain is my #1 symptom. I am currently on MAG SR and after doubling it I was getting major relief about a month ago, but since starting on some new abx the muscle pain is awful again and the mag is not helping.
Posts: 1748 | From United States | Registered: Dec 2011
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Kudzuslipper
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posted
Pug, I really appreciate your post. I like to hear all sides. What I truly appreciate in Dr. L's article, is that it says long term ABX does work for some-- but not for others. And that each case is really different It does seem like a pretty balanced article... and of course just really says there is so much more to know and we need more viable tests.
I am sorry you and your daughter are dealing with systemic lupus.... But I appreciate you sharing your experience.
Are you both feeling better now since you are off tetracycline? I guess the scary thing in treating autoimmune diseases with the possibility of lyme still as part of the equation is weather or not to use steroids or other biologics that suppress the immune system to manage your disease.
I really appreciate your comment.
**edited name of LLMD**
[ 06-07-2012, 03:04 PM: Message edited by: Lymetoo ]
Posts: 1728 | From USA | Registered: May 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You wonder whether "or not to use steroids or other biologics that suppress the immune system to manage your disease."
ABSOLUTELY NOT. A hundred times over: NOT
Just because antibiotics many not work for some does NOT mean the infection(s) are not still active. Not at all.
These stealth infections are called stealth for good reason. And that "stealth" nature can cause what seems like autoimmune reactions that, most often, really means the immune system somehow KNOWS there's a enemy and it's been trying so very hard but still just can't get to it (or them).
Lyme flips two parts of the immune system, too, quite different than most doctors can begin to realize.
IMO, neither the term "suppress" nor "boost" in regards to the immune system are safe for those with any chronic stealth infection.
"Modulate" or "Balance" or "Support" is where it's at -- with an experienced ILADS-educated LLMD &/or ILADS-educated LL ND (or a similar).
They MUST, MUST, MUST be ILADS "educated" so they know the science, all forms, all tricks of Borrelia and other TBD and stealth infections that make up the mix.
PARASITES
HEAVY METALS
ADRENAL SUPPORT
LIVER SUPPORT
Area all also just some of the key things that can make or break treatment for "lyme" - "lyme" is never just lyme. But, make no mistake, lyme is tenacious and it can take YEARS of consistent treatment - with all the combinations and rotations - to put it into a solid remission.
Do not underestimate Borrelia b. Ever.
And, you may want to retest with the new ADVANCED LABS CULTURE test, details below.
You may also to need to be assessed for other conditions and other stealth infections. Details:
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In response to your question:
"what if I really do have RA or Fibro?" (end quote)
In case there is any question in my previous reply about how stealth infections work and all that go along with them:
Fibromyalia is USUALLY a stealth infection, most often lyme that has been left undiagnosed. Key nutrient deficiencies that often go with lyme also tend to go with "Fibro"
RA, too, is very often lyme, mycoplasma, Cpn or other stealth infections listed in the "Diagnosis" thread above.
Certain Food Poisoning strains can also trigger RA (also in that "Diagnosis" thread).
Now, there are other ways to address all this if antibiotics just are not working.
But, you've been treating for just a year. It's far too soon to turn your back on this.
If you need other ways for treatment &/or support:
-----------------
- When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You also ask
"what to tell my colleague [who's dad is a big wig at Mass Gen and offered to fast track you to an IDSA ID doc there known to not be LL] who thinks they can get me in quickly?" (end quote)
Do thank them very much for their concern and willingness to help.
Tell them that, you have considered that and are familiar with their range of treatment. However, for you - and many others - your case is just much more complex.
Leave it at that but DO quietly:
Give them a copy of the book "Cure Unknown" and the DVD of the documentary "Under Our Skin"
Get one set for yourself, too.
Education about this issue will turn on a lot of light bulbs.
You might also share a few of the article in the threads above. But, generally, that book and DVD is the best way once the cat is out of the bag.
When possible, it's best to kept specifics of health matters private. Now, though, you have to take a stand and just say,
"thanks, it's just far more complex than their practice can tackle." Stop there. Leave or change subject. Signal you are done talking about it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Thanks Keebler as always...
I am always pushing cure unknown on people-- and have it both electronically and on my shelf for lending.
I found it to be the most fascinating book I have read, regardless of Lyme.
And my point to Pug7 was indeed the scariest thing about an autoimmune dx is that the treatment is usually contradictory to lyme.
agree or not...I do so much like hearing all sides.
Posts: 1728 | From USA | Registered: May 2011
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And my point to Pug7 was indeed the scariest thing about an autoimmune dx is that the treatment is usually contradictory to lyme.
agree or not...I do so much like hearing all sides.
- Treat the Lyme and see what happens. The "autoimmune disease" may go away.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- Hearing all sides is of no good when some of those opinions are from those who are sorely uneducated in the field.
Hear all educated considerations. To be truly educated about lyme, one simply cannot stop with the IDSA's mandate.
That "side" does not deserve a seat at the table until they do some proper homework. They need the prerequisites. They need to understand the true science of lyme. Currently, they do not.
They do not understand how lyme changes and tricks the immune system. It's not at all what they think. Not even close.
Would we like the IDSA ID doctors to join the effort to properly treat lyme until remission, whatever it takes?
Absolutely. But only if they ever become serious about learning the truth. To date, they have indicated repeatedly that they have no such interest.
Can't have someone in the band who won't learn the notes, practice their instrument, polish their skill, expand their techniques and join in with others.
Can't think of a good science analogy, still . . .
. . . while there can be many ways to approach treatment, being ILADS "educated" - regarding full understanding of ALL their research and discussion points - is absolutely imperative.
Absolutely. If you really want the truth as best we can determine at this point in time.
This is about discovering the truth. And that takes perseverance.
ILADS doctors are not about to give up in their search for the truth in their search for what (all) is involved, what (all) may work, and what (all) can at least help along the way.
ILADS doctors are all about offering educational opportunities for patients. IDSA is not.
ILADS is about expanding awareness of tick borne disease processes - and various treatment options. IDSA is not, not at all.
ILADS is all about how best to listen to patients so as to gain a better understanding of the processes and scope involved. IDSA is not.
Now, if you want to "hear the side" of those who have intentionally gone deaf to patients and to science, I fear you will be doing yourself a huge disservice. The IDSA "side" is in the yeasty underbelly, buried, not open to air nor light. -
[ 06-07-2012, 04:05 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, I have been dealing with Lyme in my entire family for 12 years. I have read every book, seen every movie, talked with several LLMD's, and read probably 80% of all Internet information. Including some early courageous work by Dr. S., who has, however, apparently become less open in reaction to the polarization going on.
Believe me, my opinions do not come from a lack of education and knowledge.
For me,treatment with antibiotics helped for a little while, but I believe that it is the antibiotics that exacerbated my autoimmune problems. I have steadily improved over the 3 years that I have been off.
A lot of the variations among us are probably genetic and may never be clarified.
These are mysteries. Neither Dr.S. nor Lymenet posters have solved them. The certainty and orthodoxy on this site is dangerous. It is healthy to look at things from all sides, if more difficult.
Posts: 108 | From US | Registered: Apr 2012
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AuntyLynn
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Member # 35938
posted
Wait ... you joined this site in April and you've been "off" antibiotics for three years? You've made exactly 16 posts in 3 months - and you think the "orthodoxy" on this site is dangerous?
Now certainly, you have a right to your opinions, and you say you have long experience from which to draw your own conclusions...
Now please hear my experiences, and MY conclusions!
My Mom went from doctor to doctor over 13 years. She had three hospital admissions, was seen by four different neurologists, and was given dozens of bottles of anti-depressants (including one she grew way too fond of), before ONE of these so-called "experts" decided to even TEST for Lyme!
The resulting spinal tap was a glaring positive!
But before her first PICC line was even removed, two of her scheming children decided they could use this opportunity to divest Mom of her legal autonomy, and move her out of State - as they just couldn't WAIT to convert her real estate into ready cash! (Her house, and everything in it, are now gone.)
Now, from my perspective, if it were NOT for the gross and willful NEGLIGENCE of the IDSA "experts" who REFUSE to see their ERROR, my mother might have been successfully treated for Lyme during these past 3 years - along with God Knows WHAT coinfections she may be harboring!
If the medical community was as informed about the need for long term treatment then, as I am now, no one would have "given up" on her Lyme infection, and continued to misdiagnose her condition as "Alzheimers like symptoms." Do you have any CLUE what that diagnosis carries, in the way of social and legal stigma?
Instead, despite her former testing and meager treatment, she has been warehoused in an Alzheimers Ward (that is far from anyone she knows) surrounded by people who are far more debilitated, and drugged with antipsychotics that are completely inappropriate to her condition!
So the medical community at large knows NOTHING of the real nature of Lyme, because the IDSA gives no quarter to opposing opinions! And the "prevailing" IDSA treatment protocol is ENFORCED by insurers!
I'm glad that you are happy with your own status quo, but there are THOUSANDS who are NOT!
These thousands have lost jobs, homes, marriages, and most of their former society, all because they cannot get out of their beds, or out of their wheelchairs!
The ILADS doctors have managed to MIRACULOUSLY RESCUE some of these patients from their former fates - when they were treated agressively for TBDs - instead of for arthritis, fibromyalgia, MS, ALS, post-Lyme syndrome, or AZ ... because NONE of these so-called "diagnoses" PROVED to be the CAUSE of their disabilities!
And IMHO, it's awfully damned hard to knock that kind of SUCCESS!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
wow- Pug has been around here for awhile- probably hadn't posted for awhile and re-joined. I think she has a valid point.
I was very (+) for lyme, babs WA-1, myco, cpn, etc.. But as soon as I started treating, my baseline plummeted to an unimaginable level. Bed bound for the first few years, then homebound.
I mad zero progress on heavy antibiotics, including longterm IV therapy. I lost my ability to drive, socialize, work.
I quit antibiotics in June of 2011 and have treated briefly with herbs and anti-fungals since. I have done acupuncture and worked on repairing my gut that abx destroyed.
I am now able to drive again on most days (huge). I can tolerate stores and restaurants on many days. I don't have a 24/7 migraine.
Is there fallout? Definitely. Do I still have problems, absolutely. But I have a taste of what it feels like to be alive too..
I also developed auto-immune markers after treating. There are no clear cut answers. Genetics, environmental circumstances can all play a role.
NO ONE has the ANSWER and if they did, we wouldn't be here on this board. Just sayin' thanks Pugs for sharing another point of view, even if it's not the most popular.
Best to all!
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I got sick shortly after using DHEA because I am over 40 and was trying to get pg. I believe there is a connection between taking this steroid and getting sick!
-------------------- PHOENIX: mythical bird that rises from the ashes July '09 got sick very quickly could barely get out of bed - ND diag lymes.. and the journey began bite: unkown - no rash Posts: 248 | From private | Registered: Jul 2010
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posted
I have been around for a long time, going back more than a decade. I posted on this board many times in the past, but for the last 5 years have not been here at all. Isn't that a good sign?
For myself, and one of my kids, the "medical mysteries" that we all experience are more than frustating, and we have experienced what I would almost call atrocities from the medical system, at times.
So I am not a newcomer, and I do understand.
Nevertheless, I do feel that for some of us, with certain genetic types (HLS DR4 for one), there really is a post-Lyme autoimmune syndrome. I don't know if that means infection is gone or not, and neither does anyone else.
Seeing Steere may be unpleasant at this point. I have no idea. The Lyme wars have polarized him too, perhaps. I believe he had death threats some time ago. But if you read some of his research and writing, there is some useful stuff.
The important thing is that some of us also feel better once off antibiotics (and once the immune system adjusts to being off, which takes a couple of weeks). Many fellow Lyme-sufferers have said that antibiotics got them to a certain point, but after that, they needed some sort of integrative medicine.
And healing the gut and immune system from heavy antibiotics is also a challenge. I did not take these med regimens lightly, especially for my child.
I cannot really afford much integrative medicine, supplements and so on. I do Tai Chi and work on accepting, and being peaceful around my symptoms. A side benefit is that I don't see doctors much anymore! I have slowly felt better, and happier, over these last few years.
I have come back here a few times since April, yes, and my intention is to help people. I don't have any answers, only my own story, which will be different from someone else's.
One other thing: steroids like prednisone help me and my daughter tremendously. I have to avoid them due to osteoporosis but every once in awhile I indulge. My daughter can be on the couch unable to lift her hand or get up, and within hours of steroids, she is up, at work and school. And we both tested very positive for Lyme 10+ years ago.
The important thing is that some of us also feel better once off antibiotics (and once the immune system adjusts to being off, which takes a couple of weeks). Many fellow Lyme-sufferers have said that antibiotics got them to a certain point, but after that, they needed some sort of integrative medicine.
I found this to be true, too. I think in the end we will find that the truth is somewhere in the middle, that neither the ongoing heavy abx (which do work for some) nor the IDSA are right. It will be somewhere in the middle.
ie - treating infection longer than the IDSA says, but dealing with issues other than active infection more than most LLMD's do (some are starting to do this more).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
[/qb][/QUOTE]I found this to be true, too. I think in the end we will find that the truth is somewhere in the middle, that neither the ongoing heavy abx (which do work for some) nor the IDSA are right. It will be somewhere in the middle.
ie - treating infection longer than the IDSA says, but dealing with issues other than active infection more than most LLMD's do (some are starting to do this more). [/QB][/QUOTE]
^ THIS
Posts: 169 | From The Poconos | Registered: Jun 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Isn't this really about the IDSA only addressing spirochetes and not the other co-infections?
If the issue is only spirochetes, then maybe that's the problem, and why they say it is not chronic and easy to eradicate. IMO, it's ALL of the infections that makes this chronic.
As Dr. K. has stated that after he treats parasites, the other infections incl bb are easier to treat.
Maybe the real issues of ALL the infections are not being talked about. I don't get it. Maybe someone else can explain this.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
And the IDSA is basically ignoring the possibility and severity of coinfections. They only VERY recently acknowledged that babesia is a problem.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
About post lyme and autoimmune, wasn't there a strand of DNA found in an alzheimer's brain or brains that was BOTH borrelia AND human DNA? This would mean that the disease, left long enough, causes our own cells to manufacture foreign proteins and thus an 'autoimmune' response?
We just don't know enough about spirochetes, its like a new frontier.
However, anybody who was a part of the guidelines that have cause so many of us to suffer needlessly is not a good guy. Not in my books. Not until he is a part of new guidelines that favour appropriate treatment beyond 4 weeks.
Posts: 161 | From vancouver island | Registered: Feb 2012
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quote:Originally posted by tickle: However, anybody who was a part of the guidelines that have cause so many of us to suffer needlessly is not a good guy. Not in my books. Not until he is a part of new guidelines that favour appropriate treatment beyond 4 weeks.
- There ya go!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Most patients with Lyme disease respond well to a three-to-four-week course of oral antibiotics (e.g. doxycycline or amoxicillin). Patients who do not have symptoms early in the infection or are not treated for early-stage Lyme disease may develop organ-system involvement of the infection such as:
Carditis (inflammation of the heart) Lyme arthritis (the most common late-stage manifestation of Lyme disease) Neurologic disease
Some patients who develop Lyme arthritis, neurologic involvement or heart involvement may require antibiotic therapy delivered intravenously. In these cases, a peripherally inserted central catheter (PICC line) will be placed in your arm and the initial infusion administered in the Rheumatology Unit's Infusion Center. Our experience in coordinating home infusion care will probably allow you to receive the remaining course of antibiotics in the comfort of your home rather than in the hospital.
In a small percentage of cases, Lyme arthritis persists after oral and intravenous antibiotics have apparently eliminated the bacterium. This complication is thought to result from the development of autoimmunity in affected joints. After appropriate antibiotic therapy, we treat these patients with anti-inflammatory medications or disease-modifying antirheumatic drugs.
Posts: 108 | From US | Registered: Apr 2012
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posted
There are no authorities. MGH is no exception to that rule, not even if antibiotics have "apparently" eliminated the bacterium. It's far more complicated than anyone can surmise in 4 paragraphs, and that's not taking into consideration co-infections.
Not much is understood at all, and nobody is an authority. It's a moving and misunderstood target.
Posts: 161 | From vancouver island | Registered: Feb 2012
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quote:Originally posted by tickle: There are no authorities. MGH is no exception to that rule, not even if antibiotics have "apparently" eliminated the bacterium. It's far more complicated than anyone can surmise in 4 paragraphs, and that's not taking into consideration co-infections.
Not much is understood at all, and nobody is an authority. It's a moving and misunderstood target.
Yes. Agreed.
After the standard course of treatment, I was still bedridden.
Yet after 20 months, I was spinning my wheels and needed to address more than infection.
That's what I mean about meeting somewhere in the middle. Most conventional treatments are way too short, and I don't understand because there are other bacterial illnesses they treat long term, like tuberculosis and syphilis.
It's really complicated to get completely well for many of us who have been sick for a long time.
And, personally, I disagree with the concept of "Let's treat the symptoms now that the bacteria is gone." That is NOT what I did. I looked at my symptoms as clues to what systems in my body were weak and did things to strengthen those systems/organs.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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After the standard course of treatment, I was still bedridden.
Yet after 20 months, I was spinning my wheels and needed to address more than infection.
"sixgoofykids Moderator Member # 11141
Icon 1 posted 08-17-2007 05:58 PM08-17-2007 05:58 PM Profile for sixgoofykids Author's Homepage Send New Private Message Edit/Delete Post Reply With Quote I just wanted to say you are both in GREAT hands all the way around. We all know Dr. J is the BEST for the kiddos!
I see Dr. H (L is my PA), and I have gone from 15% to 80% in 7 months!!!! Dr. H is my hero! So are my hubby and kids who have had to deal with me, my illness, and all the household duties while I've been sick.
posted
Just to clarify, I take no position on the MGH info, just posted it because it is under discussion and newcomers can read the source of what is being discussed.
I am so happy to read about people making progress, but many don't.In fact, I have been absent from this forum for several years and am dismayed to see many of the same posters still here.
I am going to leave again for a few years. I just want to say that I hope that this community, as well as the anti-abx community, someday find enough common ground to get some real research funded for us.
Posts: 108 | From US | Registered: Apr 2012
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