posted
Dr. Told me I should have had less numbness after 3 weeks on Doxy.and since I tested negative it might not be Lyme. I asked him " what about the rash i had? " I asked if back pain could be a herx.he said maybe. He wants me off doxy to see if my pains go away and start with doxy again in 3 weeks to see if back pain comes back. He also wants me to do the EMG test the neuro ordered.
Posts: 54 | From catskills NY | Registered: Jun 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Look into treating parasites, an often overlooked co-infection of Lyme. A lot of these ticks are carrying Filarial Worms.
On top of that, a vast majority (90%) of the population are already infected with parasites/worms. Check the symptom list at Humaworm and the current PARASITE WARRIOR SUPPORT THREAD.
This is what is keeping many chronically ill. Years of abx will not eradicate this infection. Antiparasitics are needed.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That doctor is not at "LMD" or he would have never said this: "since I tested negative it might not be Lyme" (end quote)
Any doctor who is supposed to be lyme literate and calls a patient an "enigma" should just quit his job.
A true LLMD would UNDERSTAND what is happening and why. If not, or if not all the reasons, they would learn more - not toss you off for a torture test or accept a false lyme test.
I also disagree with the suggestion to get an EMG. That test can be extremely excruciating and needles actually puncture your skin and go deep into your flesh.
And it won't really tell you what you don't already know or open up any new treatment options.
Not just about lyme, though, as it certainly could still be lyme but a good LLMD would also look to all the things that go with lyme.
More and more LLMDs are reconizing the role of parasites as well as other coinfections.
It just does not sound like you have the best doctor. Hard to tell with just a few statements but it sure raises a couple red flags. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
He doesn't say much.reads his notes and writes a lot but the " you tested negative" bit is a direct quote . Then he told me about the doxy ,the emg ,my being an enigma and i asked if he thought I had cidp and he said " you don't want that.it's a bad disease" That's it. It all took 13 minutes and I was out the door.
Posts: 54 | From catskills NY | Registered: Jun 2008
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
If I knew then what I know now, I would have never allowed them to do the emg testing on my DD.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Cidp is like Ms only does not affect central nervous system but affects sensory nerves.
Posts: 54 | From catskills NY | Registered: Jun 2008
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posted
The bite was in 2008. About a year after I started having joint pains and I could hardly walk ,this lasted a few months.that got better,then got dizzy, then that got better. But in Dec. 2011 all hell broke loose with palpitations, dizziness ,joint pains ,memory problems followed by numbness in hands and feet.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Classic symptoms and time line for chronic lyme. You need a real LLMD, one who is ILADS "educated". Hope you find one soon.
In the meantime, be sure to get enough magnesium, fish oil - and Olive Leaf Extract may be of some help for a variety of reasons. Links to come.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Doxycycline, alone, sounds like that's been this doctor's only plan and a rather thin one at that.
If doxy was prescribed alone, it's important (but, oh, so sad) to know that doxy can CAUSE lyme to become chronic by forcing spirochetes into the cyst form (which doxy cannot treat).
Still, you can get better but, obviously, not with your current doctor where lyme is concerned.
Has this doctor been instructing you in PROBIOTICS (necessary when taking any antibiotic to help minimize body pain from candida that occurs from antibiotic use when unopposed by probiotics)
and also in LIVER SUPPORT (also to help lessen pain and prevent nerve damage from toxins)?
TAURINE is an important nutrient to help the nerves. MAGNESIUM, too. More detail here:
And, as Gael suggests, parasites can also be a huge part of the puzzle. There are various ways to approach that aspect. OLE can help, at first, anyway. Beyond that, Gael's posts cover parasites. Some of GiGi's posts, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While every LLMD has their own way of treating and each person with lyme requires an individualized treatment protocol, this template is one that most LLMD find helpful to cover many of the bases.
Does the path your current doctor outlined for you look anything like this?
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
[this last link is not going through right now. Go to pages 27 - 30 in the original link above.] -
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
posted
Thank you everyone for your help. I was starting to doubt the rash told my husband maybe it wasn't Lyme rash. He said he remembers perfectly ,red with white in middle and not totally round but towards the bottom it was open. It was warm and not itchy and lasted over 3 weeks. I took pics but they didn't come out good.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hope you still have those photos. Even if they did not come out the best photographic display, with a LLMD sees the photos, it may offer some good detail.
A "perfect" bulls eye is not important. In the "Diagnosing" thread above, see the links that show the variation in rashes when they do appear.
Before your husband looks at any photos, ask him to draw how he recalls having seen the rash on your body. Colored pencils or crayons would help.
Still, when a rash does appear, it can take any form, actually. The Bulls Eye is just a clear, classic one that leaves little doubt - even if not a perfect circle. It can be oval, partial, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"He said he remembers perfectly ,red with white in middle and not totally round but towards the bottom it was open. It was warm and not itchy and lasted over 3 weeks. "
That's an Erythema Migrans (bulls-eye) rash.
Mine was red, puffy, warm and hurt like hell (I kept reading that they aren't suppose to hurt on the Internet but that's wrong). Everyone I showed it too thought it was a spider bite, except one doc. It was not a classic-looking rash.
Thank God for that doc! However, I did test positive on my lyme test (this was after a doxycycline challenge).
Please seek out another doctor. An LLMD will treat you even without a positive test.
Even Virginia just ruled that a negative Lyme test does not mean you don't have lyme.
"The groundbreaking law requires patients to be notified that a negative Lyme test doesn't necessarily mean they don't have Lyme disease."
posted
He did tell me about probiotics but not about liver support and not about doxy and cyst.
Posts: 54 | From catskills NY | Registered: Jun 2008
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posted
I just looked at the pictures from the link above and some look like my rash. They are not all perfectly round.I still have the pictures of my rash but I will tell my husband to draw it without looking at them.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Three weeks of Doxy ( and likely not the proper dose) is not long enough for someone who has been infected since 2008.
Were you ever tested for the co-infections ticks can transmit?
There is a great doctor in your area. If you need his contact information, feel free to PM me or post in "Seeking A Doctor." The sooner you see a knowledgeable doctor and get properly evaluated, the better.
Posts: 4682 | Registered: Oct 2000
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posted
There are many variations of the bullseye. You don't even have to have had a rash to have Lyme. I never had a rash. Most here on this board who are chronic are chronic because they never had a rash to alert them that something was wrong.
PM Sammi ASAP!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Mariana, Please read all the links and responses. Apply to your situation.
The EMG I had five years ago wasn't very painful, so when my neuro said he was going to do the EMG to see how much the neuropathy had progressed, I agreed.
Wow, had the test gotten to be used as a torture device or what? The pain as managable the first half, but when the doc moved to my calf and knee areas, I burst into tears as I arched up off the table.
The test showed "slightly less" nerve conductivity. Though the pins and needles is with me more often than not, the numbers don't show that. My neurologist says this happens quite a bit, and that he wouldn't make me do the test again.
He also said that though he doesn't know much about chronic Lyme, he has known of people who suffer from flares and relapses.
Puzzled, I shared the test results and notes with my LlMD. He said many neuro docs fear being judged just like other docs and that it was good that it wasn't just totally discounted.
What I'm learning is that there are many smart individuals who have been trained not to believe anything they can't "fix" or cure with a medicine or anything that they can't quantify with a test. Some docs fear their medical groups, their standing in the community, or not being seen as the only one with the answers.
Here, you see many stages of Lyme, many paths to getting better, setbacks, and combinations of treatments that are indiviualized based on the years we've had the infections, our ages, our other health histories, etc.
Being your own advocate is tough, but you do have say so. I wish that six months ago I had been more knowledgable and in a better state of mind to question some of the tests I had.
I wanted"an answer one solution" so desperately that I went along with almost everything. Now I ask more questions, seldom agree to the testing without researching and reading up on it.
Are you seeing a ND as well? I asked my LLMD about parasites after reading so much on here that my symptoms mirrored.
He had me stop abx for three weeks and concentrate on parasites to let my body rest from the intense herxes, and he recommended the ND to help.
Now I'm treating parasites and Lyme again. Maybe I'll need to take a little break again due to herx, but I'm getting better at listening to my body about it.
As for the rash, I had that a couple of times, years apart. When I was much younger, my mother looked at it and was so embarrassed because she was sure it was ringworm--a five inch egg-shaped ringworm?
There are several links on here that you might consider printing off and taking in with you to your next visit with your doc. Some of the lists of meds and supplements might better help her/him help you.
Last point, eating purer foods has helped me. My body needs the best nutrients, and with my malabsorption, I'm trying to buy better veggies and use them in simple recipes.
Good luck in your journey. Remember it's little steps sometimes.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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