posted
Hi everybody! I am so happy to have found this forum.
Now, on with my story...
I live in a very heavily tick-infested area and have gotten lots of ticks off of me. I ended up sick June 8 with body aches, chills... the whole nine yards. I thought it was bronchitis because I suffer with asthma and allergies. This is where I start hitting myself... went to the doctor and got 2 weeks of steroids and omnicef.
I go off the steroids and my life starts to fall apart. I start feeling really, really bad. Very tired. Terrible headaches. Joint pains. Numbness in my foot and hand. My hips feel and have felt all summer like they belong to a very old lady instead of a 30 year old. I get so worn down that I end up with Shingles.
I finally drag myself into the doctor. He starts me on Doxy while we wait on the results. I come back positive for Rocky Mountain Spotted Fever and Lyme. My WB Igm was positive, bands 39 and 41. Doctor puts me on an additional week of Doxy, which I just finished today to make 3 total weeks.
I have gotten a referral for an Infectious Disease MD who is supposedly good with Lyme but that isn't for 2 more weeks. I am so worried that it's going to be a long 2 weeks since I am done with my meds.
So, basically... looking for advice that I definitely DO need more medicine and what to expect. I live in a rural area and I have been unsuccessful in finding a LLMD in any searches. I am hoping that the referral I have will be aware of current protocols. I am so tired of having to take naps every day and feeling like I have been run over.
Also, anyone familiar with both RMSF and Lyme showing up together?
Thanks!!
Posts: 5 | From Kentucky | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I would ask about that Infectious Disease doctor.
you could just be railroaded out of your chance to recover.
you should not have been given steroids and they likely made this worse, as you know. So, unless your life is threatened, no more.
and if it is life-threatening, only under direction of a lyme expert
LLMD, Lyme Literate Medical Doctor . . . is one that patients have given doctors who (mostly) are members of ILADS. This becomes clearer as you read on.
A LLMD will know about RMSF and lyme. And ALL the other co-infections, and liver safety, too.
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Find out if that Infectious Disease doctor - ID Doc - is an ILADS member, a real LLMD. If not, CANCEL.
But you can't just call and ask them. They think they are experts.
===
a few articles below will bring you up to speed on terms and the reasoning behind advice here.
As you are now out of antibiotics (abx), go get some good olive leaf extract and allicin from a health store.
=============== ==============
After reading a few articles below, you'll have a better picture of why you don't have time to waste with doctors who have not educated themselves about TBD. This is NOT taught in medical school.
Good luck. And, be sure to breathe and take good care of yourself. Take frequent breaks from your education about this.
======= ======= -
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
==================== ====================
AFTER reading the Savely article (link above) this will make more sense
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
posted
welcome, good job posting your detailed history!! we thank you!!!
RMSF TOO!! uffda..
you'll find at end of my post here ... my and treepatrol's newbie links where you can click on!!
Welcome; so glad you found us!! xox
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying so we all must manage our time well; so specific titles get our time/replies. NON-SPECIFIC ONES, I SOB, SCROLL ON BY! *************************************************************
Also, please be VERY SPECIFIC in subject line what you will be discussing.
Example:
PLEASE show your positive, +/-, and IND numbers from both western blot IGG AND IGM blood tests; do it this way please!
IGM ... do same thing for IGG below IGM *******************************************
18 + 41 +/- 78 IND
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
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IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
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[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results! -----------------------------------------------------------------------------------
also, please see below, TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
posted
Couldn't help but reply once I saw that you went downhill after a short course of steroids. I too went downhill after a 10day course for severe back pain in 2005.
I got so ill and for one full year saw upwards of 20 Dr.'s and specialists who failed to do a simple blood test for lyme. You at least know that you have lyme.
Find a good llmd who will treat you for however long it takes. Two weeks is a long time left untreated in the Lyme world. You're really newly infected and could possible ward off the chronic lyme if treated properly.
It's too serious an illness to delay.
Good luck.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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posted
OK. Went and got the Olive Leaf. THe Allicin came with garlic and I'm afraid of thinning my blood too much. I'll have to see if I can get it seperately.
THank you all SO much. I am going to check out the LLMD I was pm'd and go from there.
There are so many things going on with me that I didn't realize were Lyme related. Posts: 5 | From Kentucky | Registered: Aug 2008
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posted
To answer your question- RMSF and Lyme can go together or you can get them from the same tick bite. Ticks also carry 5-6 other common infections you should make sure you get checked out for; Search this board for co-infections.
Common Co-Infections
Babesia Bartonolla and more.
You could get RMSF from one tick and Lyme from another or both and other co-infections from one tick.
Your Abx treatment does not sound enough. You should learn more and find a Lyme Literate Medical Dr. in your area- or a Dr that specializes in tick borne illness.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
They did a full tick panel but I'm not sure what that included. I have a copy of my tests but I do not see what looks like the tests for all of those mentioned.
It looks like there is only 1 llmd in my area and I say area because it is 2 hours away. I'm not sure it is in my budget right now, either as they do not file insurance.
How much of the OLive LEaf should I take per day? Same for the Allicin. I'll go get it today, too.
What other supplements? I'm taking Magnesium, Acidolphilus, Vit. C, B vitamins and a multi-vitamin.
THanks again!
Posts: 5 | From Kentucky | Registered: Aug 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
When I frist got sick I didnt think that a LLMD was in my budget. I wish I had listened to all the good advice here and spent the money and took the time to travel to the best LLMD I could get to.
Now is the time you want to spend the money and time to get yourself well, or you could be paying for it or a long time.
Best of luck- Melissa
Posts: 3905 | From USA | Registered: May 2007
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Looks like she does not believe in longer antibiotic treatment.
I have caught mine early but after the 3 weeks of Doxy... I actually feel WORSE. I am assuming it's the LYme because everything else has basically been ruled out. This is so frustrating and confusing for the medical community to be so split. (I know I'm not saying anything that hasn't been said a million times before.)
Should I have felt improved with the 3 weeks of Doxy? I'm still functioning ok, just need naps... have hip/back pain, headaches and I have absolutely no endurance to work out or exercise. Posts: 5 | From Kentucky | Registered: Aug 2008
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posted
Yeah unfortunately no one around her takes Lyme seriously. I fly from Ohio to NY to see my LLMD.
You can't afford NOT to see an LLMD. Skip that ID doctor, you'll be wasting your time and money there.
It's normal in Lyme treatment to feel worse before you feel better, so feeling worse after three weeks of treatment doesn't really mean anything, except that you need more treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I'm the one who suggested the olive leaf extract and allicin - as you are out of abx and waiting to see a doctor.
About amounts for the supplements, I'm not a doctor and I can't say. However, I'd try one at a time and start slow, but not go over the directions on the label for now.
Allicin is stronger and you will smell like garlic, so practice saying that you had Italian or Greek food for lunch.
Depending upon how your stomach feels - if its is not too irritated, you might just start off with an allicin capsule in the middle of lunch - but - oh, dinner's next. If you have any stomach irritation, I'd hold off on the allicin for a while.
As garlic (allicin) is a hot herb and stimulating in nature, until you know how stimulating it may be for you, I'd wait until tomorrow and have it with breakfast or lunch.
You can take olive leaf capsules on an empty stomach or with a meal. That is not stimulating and can be taken around the clock. OLE is a "cool" herb so it will not heat you up - in fact, it may help reduce symptoms of "toxic heat" from infections.
Some books to hold you over until you can see your LLMD are listed below.
I hope you can schedule an LLMD appointment soon. When you do, you might ask if they can guide you until you come in. Good self-care is a no-brainer but, beyond that, I don't know if they can suggest anything until they see you.
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This book, by an ILADS member LLMD, has a lot of good information:
Lyme Disease and Modern Chinese Medicine (Paperback) by Dr. QingCai Zhang (Author), Yale Zhang (Author)
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro.
-======================================
This book has only one reference to lyme (in the historical use of sarsarparilla for another spirochetal infection). However, it is a vital first book to read - or a reference - for anyone interested in understanding nutritional methods.
Graciously, much of this book is on line. It can also be purchased from this site or through Amazon where you can look inside the book and see many customer reviews.
---
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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After you finish the bottle of OLE that you have, you might want to take a look at this formula. I love this. Most naturopathic physicians are familiar with this formula.
(And, as you've recently had shingles, this formula might be of interest in that regard, too. )
Again, this suggestion is to hold you over until an LLMD appointment. You may be able to continue on these as a support. Even when I've been on abx the Myrolea-B has kept me totally free of candida.
Without an LLMD or a abx protocol, this is my main helper. I think more is needed, but if it all that one has, this is a good formula.
Myrolea-B (White Tiger) is a simple formulation of highly concentrated extracts from four Chinese herbs and one Western herb.
The Chinese herbs include forsythia and lonicera, two of the key ingredients of Ilex 15 (and the main antiviral ingredients of Yin Qiao Jie Du Plan), thus boosting the dosage of these essential ingredients.
Myrolea-B also contains the antiviral agents scute (huangqin) and terminalia (hezi).
The Western herb in this formulation is olive leaf, which is one of the primary anti-viral herbs derived from the European tradition.
Myrolea-B (White Tiger) is a simple formulation of highly concentrated extracts from four Chinese herbs and one Western herb.
The Chinese herbs include forsythia and lonicera, two of the key ingredients of Ilex 15 (and the main antiviral ingredients of Yin Qiao Jie Du Pian), thus boosting the dosage of these essential ingredients.
Myrolea-B also contains the antiviral agents scute (huangqin) and terminalia (hezi).
The Western herb in this formulation is olive leaf, which is one of the primary anti-viral herbs derived from the European tradition.
SHUANGHUANGLIAN: Potent Anti-Infection Combination of Lonicera, Forsythia, and Scute
- by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine - 2003
Shuanghuanglian (SHL for short) is a modern formula that was devised in the 1960s to treat a variety of infections.
It is comprised of the alcohol-water extracts of three herbs: lonicera (shuanghua, often called jinyinhua), scute (huangqin), and forsythia (lianqiao). . . .
. . . One of the early preparations of the SHL was a tablet made of equal proportions of the extracts of each herb. This was used to treat leptospirosis, a disorder caused by a spirochete bacteria, related to the organism that causes Lyme disease.
Leptospirosis causes initial symptoms of fever and chills, headache, and muscle ache (especially in the shoulders); these are consistent with "flu-like" symptoms described for the onset of many acute infections.
In a 1971 report, the formula was described as being made in 500 mg tablets derived from 3.7 grams of the crude herbs, and being administered in doses of 10-15 tablets (thus, equivalent to the extract of 37-55 grams of herbs) every 6 hours (1), a very high dosage.
. . . Recently, Shuanghuanglian has been applied successfully to treatment of Coxsackie B3,
. . . The general indications for SHL . . . are "relieving the exterior syndrome, clearing away heat and toxic material," and its indications are "treatment of fever, cough, and sore throat that arise from wind-heat syndrome."
It is said to have "a good action in treating upper respiratory tract infection, tonsillitis, laryngopharyngitis, pneumonia, acute enteritis, viral dysentery, etc., when caused by virus or bacterial infection."
- full article at link above.
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Posts: 48021 | From Tree House | Registered: Jul 2007
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I ended up sick June 8 with body aches, chills... the whole nine yards. I thought it was bronchitis because I suffer with asthma and allergies. This is where I start hitting myself... went to the doctor and got 2 weeks of steroids and omnicef. ![[Wink]](wink.gif)
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