In an earlier post I mentioned I was diagnosed with Lyme several weeks ago. I have been very ill since June with flu like symptoms.
I just finished my 20 day 100mg/ 2x regiment of Doxy and feel like I was never treated. I continue with severe pinching / stabbing body pain, burning sensation under right shoulder and spine, creaking clicking painful neck, constant abdominal pain EVERY DAY like I've drank poison, twitching, night sweating, etc, etc. Did the Doxy do its job? Is this normal herx reaction?
My PCP was considering further more aggressive treatment but wanted me to visit an infectious disease specialist. I saw the "cocky" infectious disease specialist here in So NH who said none of my symptoms were lyme related period. He evaded questions about co infections and said the worst cases he's seen are cured in one week of Doxy and the fact I'm still having symptoms clearly proves it isn't Lyme related. He also mentioned I only had 6 out of 10 bars on my Western Blot and eluded that it was no big deal. I'm so mad at that scum bag quack. And these guys wonder why they get sued....
I called several of the referal doctors and it seems most are last resort, pain mgmt specialists. Is there such thing as an aggressive MD who accepts insurance and who will treat with further abx?
I work as an Instructor in The IT field and have been out of work the past month. I feel like I've had the worst flu of my life since june and was a totally health mid 40 yr old before this with no medical issues. I am unable to teach and fear losing job could be a reality if I'm not well quickly. My friends and coworkers dont believe Im ill because I sound fine over the phone. My GF doesn't understand why I dont feel like going out all the time so she's bailing on me. Basically, everyone thinks Im being a wuss and I've never felt so horrible in my life.
I know there are many people here who have suffered much longer than I and i dont mean disrespect them by whining about being ill a meager 3 months. So again I ask, Is what I'm feeling normal? Has the Doxy done it's job and this is normal Herx and I just need to "man up"..
Thanks in Advance Brian
Posted by Vermont_Lymie (Member # 9780) on :
Brian,
Sorry to be the bearer of bad news, but you STILL have lyme.
The good news is that you can get better with treatment.
You MUST see what we call a "lyme literate" medical doctor, or llmd.
Most doctors (especially ID docs) are almost completely ignorant about tick-borne diseases like lyme.
The severity of your continuing symptoms say that you are not completely treated. I am not a doctor, but someone who has learned about tick borne diseases like lyme the hard way -- through experience.
Go now to the "Seeking A Doctor" section of lymenet and post a query for a llmd.
Make an appointment as soon as possible, and forget the ignorant and misleading infectious disease specialist who you saw. Sounds like a truly uninformed and arrogant doctor. You need a real doctor.
Best wishes to you.
And BTW, you are not being a wuss. Lyme is a very serious disease. It can be disabling, and lead to debilitating symptoms and damage. Please get treatment and read up as soon as you can.
Posted by sixgoofykids (Member # 11141) on :
I agree with everything Vermont said.
Lyme is tough ..... it hurts, people don't understand, lives are changed. It's not fair. Posted by METALLlC BLUE (Member # 6628) on :
You're absolutely a common example of what nearly every patient reports. I can give you a list of physicians for your area with patient reports. I don't know whether you'll find someone, but we can try. E-mail me: [email protected]
And no, the Doxycycline did not work, because the dose was too long and wasn't aggressive enough in duration.
You require a specialist who treats primarily Lyme Disease and associated infections, not a general Infectious Disease specialist.
Posted by tdtid (Member # 10276) on :
Brian,
Hang in there. We honestly can all relate to your story here.
I do live in New Hampshire myself as well and I went from specialist to specialist for five long years trying to get answers, so if nothing else, you should pat yourself on the back for figuring out how to get here as fast as you did.
I only wish I had been as clever since I let the doctors yank me around for WAY too long.
I will PM you with what I know of the doctor's in our state and see that Metallic Blue said he will be giving you a list. He has great information with reports on various doctors so I'd definitely give his list VERY careful consideration since you DO want to see a SPECIALIST in Lyme.
Not some Infectious Disease doctor using IDSA guidelines. Such a sin. You WILL get better.
Cathy
Posted by Keebler (Member # 12673) on :
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Welcome. (But, oh, so sorry you had to find this site.)
20 day 100mg/ 2x - that is barely treatment at all for something this complex. Sometimes, people get lucky with short treatments but, often, they wind up here wondering what went wrong.
First, single drugs are never used by any doctor who REALLY knows about the different stages and forms of lyme as combination, rotation protocols are required.
Sorry to hear of how you are doing. I just have to wonder if the doctor didn't TELL you this is not a walk in the park. (And, yes, I know that answer. Most doctors truly don't know. They do not teach this in medical school.
Sorry for the surprise.
It may be a bit of a jaunt, but you can get better.
This is a lot of information. And there is a lot to learn. It is very complex. Still, I hope this will guide you to a plan that will bring a spring back to your step.
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.
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.
=====================
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``
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:
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.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders, 2nd Edition - by Karen Vanderhoof-Forschner (2003)
You can search inside the book and read customer reviews.
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Posted by Keebler (Member # 12673) on :
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Oh,
you might ask all those who doubt you to see the new documentary: UNDER OUR SKIN by Open Eye Pictures.
Sorry - I'm too tired to find the link.
and as for that infectious disease specialist whom you saw, you should get your money back as he is not doing his job. But members of the IDSA (the group to which most ID docs belong) do not understand. Some simply are too bull-headed to want to learn more and others simply are too busy to care - or too busy to do more, considering how they have set up their schedules.
(I usually never say anything bad about anyone or even any group, but the fact is that the IDSA members simply are NOT lyme literate. Do not waste your money or risk your life with such a doctor.)
Your GF should really watch the movie. There have been some screenings/showings and I think you can buy the DVD.
Oh, and as hard as it is, might you be able to lighten your work load or take a leave of absence? Get some co-worker to help you with some projects, an intern, etc. ?
I used to be an instructor in various kinds of communication. The last few courses I taught were very heavy with guest speakers. I know IT is different, but if you can bring in guest lecturers that might help.
And, oh . . . I also had the students do a lot of class presentations - even on their papers. I could not read them, so I had to HEAR them present and it helped cover class time. You might find other ways to cover.
Because I always sound fine, too, family never has understood. I hope your inner circle will read and understand. There is something about the phone - like a professional presentation - and a decent voice can sound decent even when someone is very much under the weather.
I hope you do not experience vertigo, although many lyme patients do. If you do, this term alone will be enough to offer as as explanation to most people. Vertigo or an "inner ear" condition is something they can more easily understand. (But, I sincerely hope this is not one of your symptoms.)
By now, I'm sure you know that alcohol and sugar are pretty much off the table and the very best of health habits will get you to your goal in far better shape.
Remember, you have the knowledge now (or it's coming along). You know you are in a precarious position and that you have to take care of yourself, no matter what others' attitudes are.
Seriously, rather than "man up" - I think you may have to be more tender with yourself. You have a good chance of this not going on forever if you get real help soon. But, this requires an enormous effort and taking care of oneself is no easy task.
Even with treatment, feeling better takes time.
Please keep your spirit - guard it - and try to enjoy the colors of autumn.
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Posted by tdtid (Member # 10276) on :
Brian,
Keebler just mentioned something about how you and your GF should go to see "Under Our Skin" together.
I HIGHLY recommend this since I saw it while it was in NYC and have a copy. But as luck would have it, it has a special showing in Nashua, NH coming up in a few days.
It will be at the Nashua Public Library on Oct. 9th and I'm sure you could call them regarding details about time, etc.
You will find it to be a MAJOR eye opener and helps those that have no clue about this disease actually understand it.
Cathy
Posted by METALLlC BLUE (Member # 6628) on :
Made a mistake in my post Brian. I wrote "The dose was too long.", what I meant to say is that it was too small (100mg x 2, is inadequate). It should have been 200mg x 2.
-- Mike
Posted by sweet pea (Member # 6495) on :
Brian,
I'm so sorry you are going through this. You were given a way too paltry dose, and I'm glad you've been sent a list of LLMD's in NH, and that you know to stay away from ID doctors. Stay away from Dartmouth-Hitchcock as well.
If you're not far from Brattleboro, VT, you could bring your GF to the showing of Under Our Skin at the Latchis Theater on November 15 at 4:00. It would help her understand what you're going through.
You could also try and find a support group near you. I don't know if NH has an online support group/discussion board, but I would also recommend joining that if it exists.
Take care, P
Posted by Lymetoo (Member # 743) on :
Brian...where'd you go??
Sounds very typical of Lyme. Same song, new verse. Find an LLMD ASAP!! No time to waste, as you need more treatment.
PS>.. Non-lymies can't begin to understand. Trust me.
Posted by Briannh (Member # 17555) on :
quote:Originally posted by Lymetoo: Brian...where'd you go??
I'M HERE !!!!!!!!
Thanks to all who have replied and PM'd me. I can feel the love
I called a LLMD this morning from the list I got. The doctor answered and spoke to me for a while! Very knowledgeable and he was willing to see me today. Only problem is I couldn't get a referal and my records from my PCP!!! So, I'm mad but happy and hopeful. I should be seeing him soon.
I'm very appreciative of the kindness and support which I have received here. Thank you all again.
Brian Posted by Lymetoo (Member # 743) on :
Cool!! Feel the love, feel the love!!! Posted by on :
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