posted
So i have been dealing with some poor health for about 4 years now. i have been to all the doctors and all the tests with mostly normal result. So here's a quick overview of what has happened. About 4 yrs ago, had some chest pains for days, trouble breathing, went to er. only had fast heart rate. So they sent me home. I was fatigued for a few weeks, never really got too much better. Starting to have balance problem months later. not true vertigo though. Ended up in the ENT office, and found the right ear had decreased balance nerve function 0%, left was fine. So we assumed the right ear causing these problems, so injected gentamycin in the ear to totally destroy the nerve, and allow the good ear to compensate. Didn't help. Still the same. But there have been other sypmtoms over this time, mostly fatigue, a daily stick neck, daily balance issues. I feel like there is a decreased blood flow to the head, kinda spacey lightheaded, and not as smart... I have severe motion intolerance. meaning if i walk, even down a hallway or in a busy store, my eyes can handle it and balance is way worse and feel horrible. Even walking outside in open air, just the walkign causing bad eye brain confusion? The back of my skull, right above where the spine enters the head gets numb as the day goes on, tingly, almost tender. I am avid outdoorsman, had tons of ticks on me. I know 2 yrs ago, had 3 tiny (deer ticks?) imbedded in me for about 24-48rs before i pulled them out. No rash at those sites.
i thought maybe i am having silent migraines, did the whole migraine diet, and took migraine prevent drugs, no help. Also, as the day goes on, once my neck tigthens up , i get a very quick, back and forth yes-yes head tremor. almost like neck spases. I also upped magnesium, b/c i have some leg and arm twitches at night supposeledy. So nobody has any idea. All MRI, Spine MRI, HEAD, all clear. possible lyme? i am going to ask the nuerologist to order a SPECT if he will, and order a neck vein MRA, and possibly throid tests and i can ask for lyme tests. But here at umass they only do serology and WB reflex. I think they also offer a PCR (asuumign on blood). But from this post i assume i will be negative.. I may ask to just go on doxy and clarithomycin. How long to ask for the meds to see if i see any result> 60 days??? It's very possible i do not have lyme, but i've eliminated most of the major nuero diseases.... so not sure what's up.. thanks kmt
Posts: 8 | From worcester, ma | Registered: Oct 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Your symptoms were nearly identical to mine. Dizziness, spaciness, problem in storesn sore neck, etc. Been there, done that. Get the Spect, I guarantee that it will be abnormal, like mine was, this is common in lyme.
Other than your spect, you need to get away from the mainstream docs and find an LlMD (lyme literate MD) asap. You need proper tests, diagnosis, and agressive treatment.
I will PM you who my doctor is in MA. She is wonderul, but doesn't take insurance. But she will get you well.
I was only unwell for 6 months and have been in treatment now for 5 months. I'm almost back to my old self, but still have 3-6 moe months of treatment likely ahead
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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So i have been dealing with some poor health for about 4 years now. i have been to all the doctors and all the tests with mostly normal result. So here's a quick overview of what has happened.
About 4 yrs ago, had some chest pains for days, trouble breathing, went to er. only had fast heart rate. So they sent me home.
I was fatigued for a few weeks, never really got too much better. Starting to have balance problem months later. not true vertigo though. Ended up in the ENT office, and found the right ear had decreased balance nerve function 0%, left was fine.
So we assumed the right ear causing these problems, so injected gentamycin in the ear to totally destroy the nerve, and allow the good ear to compensate.
Didn't help. Still the same. But there have been other sypmtoms over this time, mostly fatigue, a daily stick neck, daily balance issues.
I feel like there is a decreased blood flow to the head, kinda spacey lightheaded, and not as smart...
I have severe motion intolerance. meaning if i walk, even down a hallway or in a busy store, my eyes can handle it and balance is way worse and feel horrible.
Even walking outside in open air, just the walkign causing bad eye brain confusion? The back of my skull, right above where the spine enters the head gets numb as the day goes on, tingly, almost tender.
I am avid outdoorsman, had tons of ticks on me. I know 2 yrs ago, had 3 tiny (deer ticks?) imbedded in me for about 24-48rs before i pulled them out. No rash at those sites.
i thought maybe i am having silent migraines, did the whole migraine diet, and took migraine prevent drugs, no help.
Also, as the day goes on, once my neck tigthens up , i get a very quick, back and forth yes-yes head tremor. almost like neck spases.
I also upped magnesium, b/c i have some leg and arm twitches at night supposeledy. So nobody has any idea. All MRI, Spine MRI, HEAD, all clear. possible lyme?
i am going to ask the nuerologist to order a SPECT if he will, and order a neck vein MRA, and possibly throid tests and i can ask for lyme tests. But here at umass they only do serology and WB reflex. I think they also offer a PCR (asuumign on blood)
. But from this post i assume i will be negative.. I may ask to just go on doxy and clarithomycin. How long to ask for the meds to see if i see any result> 60 days???
It's very possible i do not have lyme, but i've eliminated most of the major nuero diseases.... so not sure what's up.. thanks
Breaking this up for easier reading... I'll be back later to help!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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You can order the kit for free.. get your dr to sign off on it. Then when the bloodwork is sent in (EARLY in the week) then you have to pay.
Other labs are likely to miss the Lyme. You also need to find an LLMD so you can get tested for possible coinfections of Lyme.
If funds are limited, then go with LabCorp and see what happens. The ELISA will likely be run first and that is only about a 40% chance of finding Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
It sounds just like my early symptoms, for sure. I didn't get my strength back until I started seeing a Maximized Living chiroprctor.
I would suggest you find an LLMD first, then get to a legitimate chiropractor immediately. It sounds like your spine is pushing against your brain stem. It you don't have a curve in your neck, it effects your whole nervous system. I'm telling you, it works.
Get the pressure off that spine so it won't interfere with the nervous system so your body can heal! After 5 visits to my chiropractor, I had such mental clarity it was unbelievable! I mean it. It was like working on my neck opened up drain that was plugged.
I hope you get better. By the way, I'm still treating & 95% healed!! Hooray! Look for www.maximizedliving.com.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
I did just that. First, spine MD took MRI of spine, looked good. No issues. So i went to a chiro for 3 months, no difference. So i went to a specialized NCCA atlas bone chiro, and after adjustments no better. Also did cranial, back accupuncture with the top new england accupuncturist. so i think i covered the spine. Still could be bloodflow through the spine area? which is why i want an mra of the neck.
Posts: 8 | From worcester, ma | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LLMD = Lyme Literate MD, one who is "ILADS-educated" so to speak. Many LLMDs also suggest nutritional support, along with treatment.
LL ND = Lyme Literate ND (naturopathic physician), also best if ILADS-educated. Some have completed the ILADS physician's training program. In some states, NDs can prescribe antibiotics. Most LL NDs do suggest antibiotics along with support supplements.
ILADS = International Lyme and Associated Diseases Society
TBD = tick borne disease. There are many tick-borne infections and lyme rarely travels alone.
STEALTH Infection = hidden, sneaky, potentially fatal but still devastating even if it takes a slow approach. Not easy to find with normal tests. Special labs often do a better job with testing.
Lyme is just one of many chronic stealth infections. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
From the May 2007 issue of Clinical Advisor The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care. Home page: www.clinicaladvisor.com
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
Excerpts:
`` . . . Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.
* 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. . . . ------
- Be sure to read the full article as it discusses the sharp differences between CDC / IDSA and ILADS' understanding of borrelia.
- Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present. ======================
(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
============================
TESTING
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:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Severe motion intolerance is classic with lyme. The gentamycin shot into your ear may complicate matters but, as you had all the ear symptoms before that, it does point to lyme.
Neck problems, too, are very common with lyme. So are all the other things you mention. Sorry.
I do hope you can see a LLMD. I just replied over at your RASH thread (as you recalled past rashes).
Good luck. -----------------
ALL EARS. Specifically for LYME patients - lots of details about ears and what can help:
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