posted
I have tried to start this 3 times but keep getting so fatigued i could not finish it. I'm 56 y/o extremely healthy till this, a cyclist, do yoga and functional training 5 times a week. I have always had LBP off and on and see a chiro regularly. On 4/15 I was hiking with my daughter in Austin and saw a tick crawling on her but was able to flick it off. When we got back to her apt I did a quick tick check on myself and found nothing. Returned to New Orleans and back to work (nurse manager of a geri psych unit) and working out. On 5/4 (3 weeks later) I began having a feeling like an ice pick was going straight through my ear into my head; episodes would last about 15 min and then go away. That night my boyfriend noticed that my eyes were blood shot which was gone by the next day. I began having LBP that wrapped around my right side, and by 5/6 I had horrific right side LBP and could barely walk. My chiro said this wasn't my usual presentation and sent me to ortho who said I had a nerve impingement because I could not lift my right great toe off the floor. I had an MRI and they saw 2 bulging discs and got a steroid shot and steroid dose pack but got worse. Began to have right hand tremors blurry vision, worsening pain, insomnia at night and extreme day time fatigue, Symptoms would come and go. CCO of the hosp said I could not work even sedentary duty and Im now on STD. I had an epidural steroid injection and intense pain went away and fatigue went away for about 5 days but then back. I finally got referred to PT and they found profound upper and lower ext weakness. I dont empty my bladder fully, have word finding diff, memory prob, can't make the words come out, have uncontrolled body movements on the right (like I have cerebral palsy), vision and hearing sensitivity and numerous other symp. I was referred to a neurologist (who has been really good) and had brain, cervical and thoracic spine MRI, NC test, EMG and 20diff blood tests including Lyme titer, Igg and Igm. I had an EEG all of which were negative. He started me on doxycycline XR 150mg BID and he feels it is probably neuroborrelliosis, (Even though the CDC has VERY low reports of Lyme in Travis county). They are sched a spinal tap. Though Im only 13 weeks in to poss exposure and 10 weeks into develop symptoms i am wondering if there is an end in sight. My STD will end soon but at this point I can't function. I'm single and have a WONDERFUL boy friend who takes care of me every day but its taking its toll; I was SOO happy yesterday because I drove for the first time in weeks to go by more Epson salts and helped make dinner (wow), Today I was unable to get out of bed till 1130am, ate a piece of turkey so I could take my medicine and have been on the sofa ever since. I can't talk today and my vision is horrible. Is there anything else I can do??? Does this get better? Should I start applying for long term disability? Im soon scared, Grateful for any help
Posts: 86 | From LA | Registered: Jul 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up this post so all can read it:
I have tried to start this 3 times but keep getting so fatigued i could not finish it. I'm 56 y/o extremely healthy till this, a cyclist, do yoga and functional training 5 times a week.
I have always had LBP off and on and see a chiro regularly. On 4/15 I was hiking with my daughter in Austin and saw a tick crawling on her but was able to flick it off. When we got back to her apt I did a quick tick check on myself and found nothing.
Returned to New Orleans and back to work (nurse manager of a geri psych unit) and working out. On 5/4 (3 weeks later) I began having a feeling like an ice pick was going straight through my ear into my head; episodes would last about 15 min and then go away.
That night my boyfriend noticed that my eyes were blood shot which was gone by the next day. I began having LBP that wrapped around my right side, and by 5/6 I had horrific right side LBP and could barely walk.
My chiro said this wasn't my usual presentation and sent me to ortho who said I had a nerve impingement because I could not lift my right great toe off the floor.
I had an MRI and they saw 2 bulging discs and got a steroid shot and steroid dose pack but got worse.
Began to have right hand tremors blurry vision, worsening pain, insomnia at night and extreme day time fatigue, Symptoms would come and go.
CCO of the hosp said I could not work even sedentary duty and Im now on STD. I had an epidural steroid injection and intense pain went away and fatigue went away for about 5 days but then back.
I finally got referred to PT and they found profound upper and lower ext weakness.
I dont empty my bladder fully, have word finding diff, memory prob, can't make the words come out, have uncontrolled body movements on the right (like I have cerebral palsy), vision and hearing sensitivity and numerous other symp.
I was referred to a neurologist (who has been really good) and had brain, cervical and thoracic spine MRI, NC test, EMG and 20diff blood tests including Lyme titer, Igg and Igm.
I had an EEG all of which were negative. He started me on doxycycline XR 150mg BID and he feels it is probably neuroborrelliosis, (Even though the CDC has VERY low reports of Lyme in Travis county).
They are sched a spinal tap. Though Im only 13 weeks in to poss exposure and 10 weeks into develop symptoms i am wondering if there is an end in sight. My STD will end soon but at this point I can't function.
I'm single and have a WONDERFUL boy friend who takes care of me every day but its taking its toll; I was SOO happy yesterday because I drove for the first time in weeks to go by more Epson salts and helped make dinner (wow),
Today I was unable to get out of bed till 1130am, ate a piece of turkey so I could take my medicine and have been on the sofa ever since.
I can't talk today and my vision is horrible. Is there anything else I can do??? Does this get better? Should I start applying for long term disability? Im soon scared, Grateful for any help
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- etb6855,
Welcome. I can't yet read your post so will break it up and then respond. But sorry for whatever is bringing you here. Hope you find answers.
As many here cannot read even more than four lines of solid text, it's best to keep paragraphs at the max 3 - 4 finished line so that more can read with some "breathing room for both eyes and thought process"
Each new thought or point does well on its own so it does not get lost.
-------
etb6855 writes:
I have tried to start this 3 times but keep getting so fatigued i could not finish it.
I'm 56 y/o extremely healthy till this, a cyclist, do yoga and functional training 5 times a week.
I have always had LBP [injecting: lower back pain seems what that stands for?] off and on and see a chiro regularly.
On 4/15 I was hiking with my daughter in Austin and saw a tick crawling on her but was able to flick it off. When we got back to her apt I did a quick tick check on myself and found nothing. Returned to New Orleans and back to work (nurse manager of a geri psych unit) and working out.
On 5/4 (3 weeks later) I began having a feeling like an
* ice pick was going straight through my ear into my head; episodes would last about 15 min and then go away. That night my boyfriend noticed that
* my eyes were blood shot which was gone by the next day.
I began having LBP that wrapped around my right side, and by 5/6 I had horrific right side LBP and
* could barely walk.
My chiro said this wasn't my usual presentation and sent me to ortho who said I had a nerve impingement because I could not lift my right great toe off the floor.
I had an MRI and they saw 2 bulging discs and
** got a steroid shot and steroid dose pack but got worse. Began to have
* right hand tremors blurry vision, worsening pain, insomnia at night and extreme day time fatigue, Symptoms would come and go.
CCO of the hosp said I could not work even sedentary duty and Im now on STD. I had an
** epidural steroid injection
and intense pain went away and fatigue went away for about 5 days but then back.
I finally got referred to PT and they found
* profound upper and lower ext weakness.
* I dont empty my bladder fully,
* have word finding diff, memory prob, can't make the words come out,
* have uncontrolled body movements on the right (like I have cerebral palsy),
* vision and hearing sensitivity and numerous other symp.
I was referred to a neurologist (who has been really good) and
-- had brain, cervical and thoracic spine MRI, NC test, EMG and 20diff blood tests including
. . . * Lyme titer, Igg and Igm.
I had an EEG all of which were negative.
He started me on doxycycline XR 150mg BID and he feels it is probably neuroborrelliosis, (Even though the CDC has VERY low reports of Lyme in Travis county).
*** They are sched a spinal tap.
Though Im only 13 weeks in to poss exposure and 10 weeks into develop symptoms i am wondering if there is an end in sight. My STD will end soon but at this point I can't function.
I'm single and have a WONDERFUL boy friend who takes care of me every day but its taking its toll; I was SOO happy yesterday because I drove for the first time in weeks to go by more Epson salts and helped make dinner (wow),
Today I was unable to get out of bed till 1130am, ate a piece of turkey so I could take my medicine and have been on the sofa ever since. I can't talk today and my vision is horrible.
Is there anything else I can do??? Does this get better? Should I start applying for long term disability? Im soon scared, Grateful for any help
(end post by etb6855 in New Orleans) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- etb,
So sorry to hear of your ordeal. I marked some very important items with *
* symptom of note
** steroids
*** upcoming spinal tap / lumbar puncture
Your symptoms are absolutely very classic for neuroborreliosis.
I have to stop now. I hope others can more easily chime in and I'll try to come back later.
First, though, my advice is to not do that spinal tap right now if looking only for lyme. I can't elaborate as to why but it's a terrible test and not likely to "see" lyme in the spinal chord fluid since lyme burrows deeper into the body.
IF the CSF is to be examined for OTHER things, well, then it may serve some purpose but it's not a good idea for lyme.
You say you had " Lyme titer, Igg and Igm"
the lab used would help but, ultimately most labs do not do the tests correctly or test all the bands.
IGENEX is the best testing lab but it is not known by most doctors.
And, sadly, STEROIDS can make lyme so much worse. Steroids should never be given to anyone with suspected lyme. Sorry. Still, that's happened to many here (myself included) and other than assertively treating infection, adrenal support is now key.
Still, there is hope. Hold on. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No point in reading this right now, as it could be very unsettling after the fact. Do read on a good day, though, as it will explain a great deal:
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
- As a spinal tap / lumbar puncture is suggested by your doctor to test the CSF, consider:
My page on Dr. B's note on that is scrambled in my file. Can someone else please post that?
See if any of the numbers on your western blots match up with any here but, really, with your symptoms, ANY band that is positive is important to consider:
. . . The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 59, 66 and 83-93. . . .
[Explains that there are various strains of borellia, so testing often misses the mark. Even if you have not traveled to various states, birds that fly - and can carry ticks and drop them off - have and they often land in NYC, too.]
. . . The same is true for co-infections. The babesia in Missouri is called MO-1. It is a different babesia. There are different ehrlichia. It would appear there is a different bartonella. When you have different strains of germs, the test results may be falsely negative. . . .
[lots more detail here] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If it is lyme, it will only get better once you get to a very good lyme specialist and get on proper treatment.
Also, you must NOT take anymore steroids unless you are in a life-threatening situation. Steroids allow lyme to go wild in your body and enter sites where it will be very difficult to reach.
You need to read and STUDY the Burrascano Lyme Treatment Guidelines found here:
You need to go on a search for a great lyme doctor immendiately. Post in Seeking a Doctor forum. Also, contact the lyme support groups in your area. See Support Groups on the left side of this page. Be willing to travel because good lyme doctors are very few. I can give you a name of a good one in Maryland who can see you quickly. Other good doctors generally have a 3 to 6 month wait. This doc will do monthly Skype or telephone appointments so you would only have to travel to Maryland once every 3 months. Good lyme docs see/contact their patients monthly.
I would not get the spinal tap if I were you. I had a positive lyme Western Blot, went to a neurologist, and got a totally negative spinal tap. Burrascano says that this is the typical result, so why put yourself through this? It is NOT the way you diagnose lyme. You don't need that test at all.
Once you get on good lyme and coinfection treatment, you could begin to feel better fast. But, nobody can predict the course your will take. Some feel better in 3 months and can return to work, and some can't. Some people never have to stop working at all. It is a very individual thing.
Look at the list of lyme symptoms on pages 9-10. Mark all that you have. I think that you will see that you do NOT need a neurologist but rather a lyme specialist.
Most lyme specialists are regular doctors who got lyme disease and eventually found out that lyme is extremely difficult to cure if not caught early. Find one whose entire practice is lyme patients. They have the most expertise.
Here are some relevant quotes from Burrascano for you:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (p. 4)
"GENERAL INFORMATION After a tick bite, Bb undergoes rapid hematogenous dissemination, and for example, can be found within the central nervous system as soon as twelve hours after entering the bloodstream. This is why even early infections require full dose antibiotic therapy with an agent able to penetrate all tissues in concentrations known to be bactericidal to the organism." (p. 11)
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present. It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children." (p. 8)
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (p. 12)
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery. More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (p. 4)
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, TF and I must have been working on the "easy reading" edited post at the same time and I just took a long time to do it. I did not notice that after I posted. Since I refer to the * in my following posts, I'll leave mine for referencing my remarks. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
I agree .. sounds like Lyme is a big possibility. NO MORE STEROIDS and don't make yourself WORSE by having an invasive spinal tap. They will push you for one, but it has a 20% chance of showing Lyme.
Maybe they want to rule out other infections .. but personally, I would tell my doctors .. NOPE.
You need to find a LYME SPECIALIST right away. They are nearly non-existent in Texas, so you are in a very bad spot.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
I am very sorry you are going through this. Yes, this is scary, but there is hope!
It is important that you see a LLMD (Lyme literate medical doctor), which is someone who is knowledgable and has experience treating Lyme disease and coinfections.
Most doctors are ill informed about Lyme disease and treating Lyme disease properly. I recommend watching "Under Our Skin," which is both eye-opening and gives a good snapshot of Lyme disease including different standards of care.
Can you travel out of state to see a LLMD?
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
Thank you all for such valuable information! So happy I registered for this blog!
Posts: 86 | From LA | Registered: Jul 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
This forum has been a wealth of knowledge and may have saved what is left of my life .on that note .a neuro said wait and see ifnit turns into als
.a infectious disease doc said lyme was a false positive and it wss something mitochondrial. Do not wait .there are many modalities. And lots to learn..
Find a good tcm doc and or a functional medicine doc.i recommend watching under our skin and justinandcristie on you toob with your fiancee..prepare finacially as it is all out of pocket ..you are in a fight for your life ..
what is lbp..? Are you a nurse ? Liscensed nurses can prescibe in my state can they there ? If you want confirmation to treat with everything they have .you can see the spirochettes in the blood at 1000x
as far as the twitching i found chinese cats claw ,iv glutithione, rocephin and rifing for bart has got the fascilations down quite a bit .
We are here in the boat with you ,congratuadolences. .it has a name ..borreliosis and co
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- bluelyme,
You ask: "what is lbp..?" From other statements in that post, I assumed it stands for lower back pain (my first hunch, low blood pressure, did not "go with" the other statements). Still my guess. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- etb,
As a nurse, you likely are already doing this. Just want to be sure as this is so very essential.
Be sure PROBIOITICS are on board, just hours away from antibiotics. If you take capsules, also be sure to open up a capsule so some can just sit in your mouth for a while.
If you need additional anti-candida measures (along with the no simple carbs you likely already do) . . . OLE was a remarkable help for me.
Foods that have probiotics and prebiotics also important.
A very specific brand of Olive Leaf extract (or a brand that uses the same methods of growing, harvesting, processing) - Seagate. Detail:
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