posted
I'm just starting to investigate this whole Lyme thing...
In 1997, I found a tick embedded in me a day or two after camping in a wooded area in Central California.
I had the bull's eye rash and had been feeing awful- like a truck hit me.
I was never given a blood test for Lyme, but I was treated for it with meds. I responded positively to the treatment so that was that.
This past September, I discovered enlarged lymph nodes in my armpit, and then enlarged nodes in my groin in November.
I had been suffering from fatigue and an excessive amount of colds and flus.
ANA blood tests came back positive twice, but nothing else was abnormal.
Lyme "teitur?" came back negative
I was treated with a round of Levaquin.
Finally,last month I had the nodes in my arm biopsied. The official result was a "benign reactive lymph node."
The nodes in my groin are still enlarged.
Looking back now, I see that my health really started to change around the time I got bit by that tick.
I seem to get fatigued more easily than others, especially if I've been in the sun.
I also had heart palpitation problems around the year 2000.
I had an atrial ablation which took care of the it, and i haven't had any trouble with that since.
I have been getting colds at the rate of one a month for the past few months, and my fatigue seems to be getting worse.
I have no aches or pains,
no symptoms of the "mental fog"
I have tinnitus and have had that for years.
My doctors seem to have written off Lyme since the original test came back negative.
I'm now being referred to a rheumatologist, and my primary physician told me this may be something I'll just "have to learn to live with."
It's not yet to the point where it's affecting my work, but I have had to turn down social events because I'm tired or am suffering from yet another cold.
Thyroid checked numerous times and it is normal.
I've also tested negative for mono, had normal CBC, sed rate, and TSH results.
Any ideas on where to go from here?
[ 03-29-2009, 03:49 PM: Message edited by: urbancalgirl ]
Posts: 3 | From Central California | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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The bull's eye rash is always lyme. So, you had that in '97.
Last September: fatigue; colds & flu ANA: positive Lyme test: negative (you said it was a titre test and that would have been an ELISA - a very poor test.
Looking back: trouble all began after tick bite and rash.
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It's very clear that you need to find an ILADS-educated lyme literate MD (LLMD) as soon as possible.
thyroid tests are not always accurate. The Singleton book below will go more into that.
I'd love to extend all the warm and fuzzy comfort but if I do that I'll be to exhausted to post the links below that will, hopefully, lead you to find what you need.
I do hope other who are better at comforting will come along and offer their hugs. No one should have to go through this. But many have. By their sharing, may your path get easier.
good luck. I'll come back with a series of links.
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adding:
You said: " . . .I'm now being referred to a rheumatologist, and my primary physician told me this may be something I'll just "have to learn to live with." . . ."
Drop them both. the rheumatologist will say you have fibromyalgia and give you NSAIDS that are not good for you. If your PCP thinks you have to live with this, that doctor is stealing your money. Don't pay someone who does not have the education necessary to treat you.
Through the local lyme support group you may be able to find a new primary care doctor who is Lyme Friendly and can offer supportive care and services while you consult with a LLMD.
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[ 03-29-2009, 04:29 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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adamm
Unregistered
posted
The bullseye rash means that, without a doubt, you have Lyme, and the fact that you were almost certainly inadequately treated for it means that there's a very good chance that it could be causing problems now. They say you need to continue treating for 3 months past the point at which all symptoms resolve to avoid relapsing.
Unfortunately, the big shots in the ID community have been misleading the public about Lyme since it emerged,so most docs have no clue how to treat it. You should post in seeking a doc to find a good physician near in your region and then read up on what you're really dealing with. Here are a few good places to start:
posted
welcome urban, boy, did you come to the right place!! we can help you galore ok.
copy your post to SEEKING DR. FORUM, and break up your long paragraphs into smaller ones please for us neuro lyme folks who can NOT read or comprehend really long ones like that ok! see my guidelines below ok.
get a western blot igm and igg blood test drawn locally mon/tues. and send to IGENEX LAB, PALO ALTO, CALIF.
i have detailed instructions in my newbie package links below; use table of contents.
look for IGENEX and it's mentioned several times before the DETAILED info ok. it'll give you test nos., $$$, and what you dr. needs to do on igenex's required form.
you had ELISA titer; most do NOT show positives on that.
using my contents table again, look for the heading of SYMPTOMS and read thru the lyme, and co-infection symptoms. if you see many of co-infection symptoms showing up too, i'd be tempted to have this testing done same time ok.
i can't remember anything more that you wrote above; 39 yrs. neuro lyme here; 34.5 yrs. misdiagnosed by 40-50 drs!
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Fortunately for you, there are a couple ILADS-educated LLMDs in California. Be sure to contact your closest support group.
This first article explains the importance in consulting an ILADS-educated LLMD. Some doctors may say they treat lyme, but really don't. Be very clear before scheduling.
And, as it may take a while to get in, the Singleton, Buhner and Zhang books can help while you wait. Burranscano's guidelines detail self-care and some essential supplements.
You might ask the office manager at the LLMD's office where you schedule an appt. if there is a set of guidelines or books that the doctor would suggest while you wait.
Again, best of luck to you. Knowledge is power - and may that power actually provide energy for you to move along a good path.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
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:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .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, containing MUCH more detailed information.
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Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
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.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
If you have photos of when you had that rash, take one or more so that the doctor can have for his/her file. This would really help. Take all you have if you have multiples so that the doctor can get as many angles and as good of a perspective - and maybe even see your face in one of the shots.
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In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
Wow, thank you all. I did not expect this much information, this fast!
Posts: 3 | From Central California | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Oh, to be complete in my set of links to you, I wanted to include Rife. Now, it is clear that you were exposed to lyme and you do need to consult a true expert and also be assessed for common coinfections.
However, AFTER you have a better picture of what you are dealing with, you might just want to know about rife machines.
Some patients have found their use very helpful. Doctors are not allowed to bring up the subject but you can ask if your LLMD has had patients who have had good experiences - or not.
I do not at all suggest using a rife until after you consult and have been thoroughly assessed by a LLMD. But, for reference and to add to your file of possible treatments:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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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. 
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