posted
I was in the er back in the beginning of june and i had at the time a bulls eye on my back with flu like symptoms.
He told me to follow up with my dr and put me on a zpac for strep throat (2 rounds) I waited until the end of july to get into my dr who literally handed me blood work and said i will mail you a referall to a rheumatologist.
The wait to get into him has been well over a month and a half.I go Sept 14th but i am to the point of being so sick, tired and sntire body hurts, swollen and i can barely walk.
Back in aug i noticed yet another bulls eye rash now on my leg. I was living on a farm this summer and counted 43 tick bites that i physically removed the ticks myself.
The last one did leave this rash which is still spreading. Im desperate for an antibiotic (or something that helps) and not sure how to ease symptoms if that is even possible until tuesday.
I have a 6 yr old and 6 month old and really struggling to take carw of them with the pain and fatigue but also insomnia. Should i try the er? Tia!
[ 09-10-2015, 09:57 AM: Message edited by: vulnerable ]
Posts: 6 | From south jersey | Registered: Sep 2015
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Take photos of the rash, make notes of dates, etc.
The rheumatologist is not likely to help but do ask those in your closest lyme support group if any know his / her name - you might get lucky. Most doctors, even "specialists" are not treating properly so do your homework about the specific doctor before going.
Call your PCP today and tell them how much you are in pain, etc. and that you need help today. If they do not help, see if your insurance will cover Urgent Care.
Be sure they SEE the rash.
I hope you have some help with your children. If you are nursing your baby, this is important to tell the doctor, too as lyme can be passed by nursing (sorry to just blurt that out but it is very vital detail).
can't type much now, though I hope others will reply for you soon. It can get better.
Be sure to avoid any steroids / prednisone if offered by any doctor. That could make lyme so much worse. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Luckily i am not breast feeding as my daughter was on an NG tube in children's hosp for the first three months.
I have had these symptoms for a while now. In fact two years ago i kept testing positive for sphyllis and started a month of doxy immediately. A few days later would get a call saying it was a false positive and to stop treatment.
I kept taking the doxycycline because by then i felt a bit better. Even after my c section after all the antibiotics i was feeling better until June.
I have called my dr several times. Both of them saw the rash and the er dr also saw and confirmed it was lyme from the rash plus the blood test. They do not know how to treat and want zero part in it and sent me to the rheumatologist, orthopedic surgeon and physical therapy.
Thank you for the link! Im checking it out now
[ 09-10-2015, 09:59 AM: Message edited by: vulnerable ]
Posts: 6 | From south jersey | Registered: Sep 2015
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posted
Did you post in Seeking a Doctor for help in finding an LLMD?
The other doctors will not treat you for Lyme... at least not long enough to get you well. I would save my money on that.
It's so criminal that doctors do NOT want to be involved in treating Lyme disease. You also need to be checked for coinfections. You are bound to have them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I can not afford an llmd right now with my daughters health issues as the local ones do not take insurance. The rheumatologist specializes in lyme but he does not believe in long term lyme.
He treats the sysmptoms of lyme like RA and fibromyalgia after 30 days with steriods and infusions. At this point ill just be happy to get an antibiotic.
Hopefully by then i can get in a llmd. The ER dr said to ask to be tested for coinfections as he is worried about my GI probs. Hopefully rhis new dr does that next week.
[ 09-10-2015, 09:59 AM: Message edited by: vulnerable ]
Posts: 6 | From south jersey | Registered: Sep 2015
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posted
Welcome to Lymenet! I sent you some names of a few LLMDs who take insurance (you will have to verify that when you call).
The bull's-eye is definitive for Lyme. Steroids are contraindicated for Lyme, because they suppress the immune system and the disease gets worse.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this, click on the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
Wow thank you for all the info. I will read theinks and have the movie saved to watch.
Posts: 6 | From south jersey | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
OLIVE LEAF EXTRACT – LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your 6-mo old daughter, especially, should be assessed for lyme, too, based on detail in your post above. That false positive syphilis test 2 years ago -- likely lyme as lyme is a spirochete similar to syphilis and it can make a syphilis test light up, so to speak. You may have had lyme while pregnant and that can pass on to baby.
Your other daughter, too, should be assessed, too, as she may have tick bites just as you.
Sounds like you already know to avoid steroids and that the rheumatologist is not lyme literate enough for you. Still, good to know:
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Do not take NSAIDS if that rheumatologist suggests -- you say he treats lyme like RA. and, no steroids or even "biologics" as they suppress immune function.
Yes, test / assess other tick borne infections. That ER doctor was right in that. But not all tests are accurate.
And you might have a genetic test for CELIAC. You mention GI issues. Gluten can really mess up GI function and many with lyme do better without it, even if they don't have genetic celiac. -
[ 09-10-2015, 07:51 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Doxycycline cautions:
1. avoid sunlight on your skin (even "bounced" sun) even for weeks after course is done; [however, lyme treatment for someone who has apparently had it for a couple years will take a while, a month is not going to cut it, sorry]
2. Food with doxy. But no dairy. Do not take with any multi minerals, either. A substantial meal, in the middle with some food before and after the doxycycline really matters.
Protect stomach but do not take a PPI - proton pump inhibitor (they have some negative effects). take doxy with a substantial snack or meal - in the middle so you've got some food before and after
Avoiding gluten can help with the stomach, too.
3. keep torso as close to upright as possible for at least 30 minutes after doxycycline taken so as to help protect esophagus from the irritation it can cause if lying down.
Depending upon the angle of the particular chair, the most upright position of a recliner MIGHT be okay if you must rest your head or put your feet up, just don't slink down. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You do not need another lyme test
(do get copies from your doctor's office manager for your home file, though and also include in your home file the test from 2 years ago for sphyllis as that may have some indicators regarding spirochetes -- and keep photos of those bulls eye rashes).
For coinfections, though - and for your daughters:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
This is what my leg looks like today. What my PCP saw and refused treatment. I am worried about the rheumatologist cause i know he prescribes prednisone and rx ibuprofen which i cant take with my othermedical conditions.
Thank you so much for all of your advice. I have been asking the pediatrician to test but they are refusing. She was just refered to neurology so i will ask him. Ty again. You all gave me so much info!
Posts: 6 | From south jersey | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ibuprofen is very hard on kidneys and, with a toxic infection such as lyme, it can be damaging. ibuprofen also constricts blood vessels in entire body, not a good thing.
as for prednisone, whatever "other conditions" keep that from being okay for you - to be very clear now - because of lyme, it should NEVER even ever be considered -- unless a life, lung or vision saving need -- then only with specific antibiotics.
If you are sure that the rheumatologist won't take this seriously as an acute infection (never mind your history with possible lyme, it's now a new one to present) . . .
and if you are sure he's going to prescribe prednisone and ibuprofen, it makes sense to not go at all.
However, if there is a chance he may prescribe antibiotics, you might still go.
But, flagyl really needs to be part of the plan, too. And he likely does not know that but maybe if you share with him why, he might ?
my hands can't explain that but it's about the cyst form
The photos did not transfer, sorry.
Neurologists also don't generally treat lyme correctly. hope you can connect with support groups to find local MD connections. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- How taking just doxycycline (or any antibiotic) can cause Chronic Lyme:
posted
i have a great LLMD in Jackson, NJ. i know you said you cannot afford but you also cannot afford to waste time with a dr who might be thinking about steroids. That thinking automatically discredits that individual as not being Lyme Literate.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
Stop going in circles and LISTEN to the people here, order antibiotics yourself from overseas, There is NO other way out. Drs have told me they treat Lyme but then they lied to me, don't really treat Lyme right, You MUST see a LLMD ASAP.
Posts: 532 | From Texas | Registered: Oct 2004
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