posted
My partner M., who is 31 years old, has been struggling with a few undiagnosed health problems for a few years. We live in the Hudson Valley/Ulster County (NY) and are outdoor people who go hiking in the woods regularly.
We try to be vigilant about finding ticks immediately but she still has had numerous tick bites over the years. She once, while working as a counselor at a woods based summer camp, came down with a horrible case of brain fog. She also had a bulls-eye on a separate occasion about one year ago. She took two weeks of doxycycline both times. Mostly she is tired and cranky very often.
I have always felt like she has lyme but she has always tested negative.
Most recently M. has been struggling with tendonitis of both wrists for about a month, is often very tired, has some brain fog, moodiness, and has overall aches and pains that are not normal for a otherwise healthy/active 31 year old.
She works in a very physical job and is just exhausted at the end of every work day. Her "doctor" ordered a Lyme AB w/ Reflex Western Blot bllod test. However, she does not have very good insurance (Hudson Health Plan/Medicaid) and has to go to a clinic with lots of different doctors, many who are not very friendly or helpful about anything.
She has an appointment to see a doctor in two weeks but would love to get some advice of what to do in the meantime. I am not sure how to read the results. The test results are the following:
LYME IGG/IGM Ab Value 1.27 (positive greater then 1.09)
LYME DISEASE AB SCREEN Present on: P41 AB. Absent on: P93 AB., P66 AB., P58 AB., P45 AB., P39 AB., P30 AB., P28 AB., P23 AB., P18 AB.
LYME AB, IGG WB- Negative Absent on: P41 AB., P39 AB., P23 AB.
LYME AB, IGM WBerp. Negative
LYME DISEAE AB (WB)- Canceled by the ancillary LYME Ab IgM Interp., Canceled by the ancillary Lyme AB IGM Interp, Cancelled by the ancillary
Her PODIATRIST (who just happened to be there this week for another issue and the podiatrist felt bad for her) gave her a two week script of doxy but she has not spoken to any other doctors since her blood work came back earlier this week.
She is currently taking vitamin D, fish oil, astragalus tincture, and a general immune system tincture. Friends have recommended putting her on a regiment of teasel, the green dragon botanical lyme formula, quintessence, and MMS.
So, what do you think? Should she start taking the doxy? Should she get more blood tests?
Any support or ideas would be greatly appreciated. We are feeling really overwhelmed and are not sure what to do.
Posts: 4 | From Hudson Valley, NY | Registered: Mar 2009
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
She has an appointment with a Lyme Literate Medical Doctor in 2 weeks? (LLMD). I hope so!
If she takes the Doxy, highly recommend she takes probiotics 2-3 hours from the Doxy-
Hope her upcoming appt. is with an LLMD, who can help her- Hang in there- Links on top of this forum
have a lot of good info as well.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Unfortunately, her appointment in two weeks is NOT with a LLMD. It is with a general practitioner she has never met before at a clinic. The only doctor we found so far who takes her insurance and is lyme literate is booked through January.
That is why I am so frustrated and not sure what to do next.
What do the blood test results mean?
Should she get additional blood tests?
Should she start with doxy?
Should she take herbs?
Posts: 4 | From Hudson Valley, NY | Registered: Mar 2009
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posted
I THINK the first test is the ELISA. If so, that means she has Lyme.. so yes, take the doxy! She needs 200mg twice a day. She is BOUND to have coinfections too with all those bites!!
If I were her, I would also take the herbs, but not too many at once. Begin one thing at a time. She may herx and not feel well!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Did you book the appt for Jan? If not do so and call frequently to check for cancellations. Best case scenario would be if she could stay on the doxy till her appt.
Make sure her diet is good as well to help her immune sytem as well as the effects the antibiotics will have on her gut. No sugar, gluten or processed food would be best.
Glad she has you to help her out.
Posts: 1748 | From United States | Registered: Dec 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Hi A.B. you are a very good partner Like Ellen says, make the appt for January with the LLMD. it will be here before you know. and ask to get on a cancellation list. Awesome podiatrist!!!
I believe there is enough info out there now, that she may be able to negotiate a 6-8 week script of doxycycline with the new dr. I think if she were to negotiate with the new doctor, and just say... "I have tried so many other things I would like to try antibiotics and see what happens... I would llke enough to stay on them til I get in with a specialist in January."
in the back of her head, she can remember that teens are often given doxy for months to treat acne.... not that abx should be taken lightly, but perhaps she can rationalize with her pcp that a 31 year old in good conditions shouldn't feel that way. I was 32 when i started looking for answers (20 years ago) ... one smart doctor thought Lyme... started me on doxy... but then her superior's stepped in said no it was not... it was another 18 years before my current pcp treated...
Technically by CDC standards she is not positive...cause the WB negates the Elysa... and many think band 41 is not indicative of lyme... but if she had a EM rash a few years ago and symptoms now, with the band 41 and the Elysa, a lyme friendly dr. would treat...
it is unlikely though that her dr, would give her more than the standard dose of doxy which is not enough to kill the buggers, just force then into hiding... I believe that is why Tutu, suggested herbs as well. samento and banderol are what is usually suggested... and/or GSE (grapefruit seed extract. if you go this route do some research on how to take... and she should go very slow... google the "cowden condensed protocol."
check out the links in the page tutu posted.... as well as this page of dr. B's guidelines
also, both of you read "Cure Unknown" it reads like a medical thriller.
but one of your questions is a very good one, I hope others weigh in... you said " should she take the doxy?"
so question for others on this board:
if she can only get standard dose even if it is enough til she gets in with an llmd... should she take it? or will that just make it harder to treat when she does get in? cause the doxy will turn the spirochetes into cysts...
Since this is not a new infection...would she be better, using these two months building up her immune system, and her gut... and holding off on prescriptions til she see's an llmd?
good luck, please keep us posted about M. and stay involved! I can't tell you how much of a support and kindness that is to her. (and it melts our hearts)
Posts: 1728 | From USA | Registered: May 2011
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
There's no such thing as a false positive on an ELISA. That's a positive lyme test. Be thankful, you know what it is. Get her to an LLMD.
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Keep the appointment with the Lyme doctor in January - she's gonna need it!! Her test results are positive for Lyme and her symptoms scream Lyme....so...unfortunately she has Lyme.
She needs to start the Doxy ASAP and find a way to keep her on it until her appt in Jan.
I don't want to fearmonger but failure to take this seriously and treat now could result in a lifetime of misery, sickness and disability for her. Kudos to you btw!! She's lucky to have you in her life:)
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Like Ellen says, make the appt for January with the LLMD. it will be here before you know. and ask to get on a cancellation list. Awesome podiatrist!!!
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