posted
I have been having dizziness/lightheadedness since June, only when I lay down and get up. Now, it is all the time and my equilibrium is off, on and off all day to the point where I am nervous to drive. I do have two other health issues that can cause it but I just don't know. I have been off abx since my thyroid cancer treatment in January. My ID keeps checking my western blots which now only show an IgM band of 23. He also cks CD57 but not with Labcorp. I see him Thurs but I am paranoid about what is going on with me and not sure if it is neurologically related. I see my primary tomarrow.
Was wondering what are the symptoms of neurolyme and do I need to see a llmd neurologist?
Also if there isn't any more lyme bacteria in my body and I am supposedly cured will my blood work eventually be "normal" or will it always show some bands?
07/2010 LabCorp test again IgG neg, IgM 41,23. Doxy 2 wks
04/2011 MD Lab IgG neg, IgM 41,23 started Suprax, Azithro
07/2011 Bioref Lab, IgG 28&39, IgM 23 added Plaquinal Posts: 58 | From New Jersey | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First, I'm sorry that you are dealing with so much and the thyroid condition does complicate matters so, true, diagnosis for what ALL is going on right now can be difficult.
Question: with that cancer treatment, or afterward, were you able to do LIVER & KIDNEY SUPPORT measures?
If not, some symptoms could have to do with residual toxicity from the cancer treatment.
Still, even if toxicity issues from cancer treatment are an issue, that can't rule out the possibility that lyme is still in the picture.
You say that your " ID keeps checking my western blots which now only show an IgM band of 23.
He also cks CD57 but not with Labcorp." (end quote)
CD57 is just a help, sometimes. It is not a lyme test and it's use should NEVER be used rule out lyme.
Worthless. Lyme cannot be tested repeatedly to see if it's "gone" it does not work that way.
Why are you seeing an ID doctor regarding lyme. They know nothing about chronic lyme and rarely consider other tick borne infections that can complicate matters.
You don't need another lyme test if you never achieved a full solid remission in the first place.
27 REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR - (and why a "CDC" positive test is so unrealistic) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Looking at your treatment history, it seems that you were not under the care of an ILADS educated lyme literate doctor - at least for sure in 2009 and 2010.
2 weeks and then later, 3 weeks of just doxy rarely adequately treats lyme. Combination treatment, for much longer is usually required for success for those with tough borrelia strains.
You should have been treated until a good strong remission.
4/11 and 7/11 treatment notes don't detail length of that Rx so it's hard to know but you say you are going back to your ID doctor so all I can say is that I would never trust my life to an ID doctor, unless, by chance he were one of the very few out there.
But there are clues that this ID doctor is not ILADS educated. You need a doctor who will not rely on that kind of repeated testing.
But, even just ONE band on either IgG or IgM can be a strong indicator of lyme, along with your history and symptoms that were never fully resolved in the first place.
I don't know what you expect by going to your GP or even back to the ID doctor.
If you don't have funds for a ILADS LLMD, there are a couple other avenues to pursue such as RIFE machine or complementary approaches but - I really hope you can connect with an ILADS LLMD first.
Sorry. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Trouble with balance / equilibrium & dizziness / lightheadedness can certainly be symptoms of neuroborreliosis. As you asked, others are detailed here:
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I mentioned Liver Support above which, ideally, would have followed chemotherapy but also should have been employed BEFORE even starting lyme treatment the very first time.
I hope you've found your way to some of these techniques to help lessen symptoms. Good luck.
LIVER SUPPORT & and several HERXHEIMER support links, too.
Some KIDNEY support detail, and -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One more note and I promise to leave this to others for their suggestions.
You say that you are "paranoid about what is going on" (end quote)
I make no apologies for ferreting out statements such as someone feeling "paranoid" or "crazy" or "being a wimp" when they are simply reporting very serious issues, indeed.
I just have to wonder why on earth you'd think you are "being paranoid?" Is this the kind of thinking that your treating doctors have brought about by their apparent lack of proper treatment?
There is NOTHING paranoid about managing lyme disease. It's a complex situation, even in the very best of circumstances.
You have the right to be heard, in all honesty and fullness. You have the right to proper diagnostics and treatment options.
In theory, anyway. Where that falls apart is that you won't get it from your GP or a regular ID doctor who follows the IDSA guidelines. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I can't really comment on your condition, but I certainly do understand the feeling of being paranoid about dealing with doctors. I have often felt like a dog that has been beaten repeatedly (by seeing multiple doctors who don't have a clue about lyme). In fact, I largely suffered in silence for 10 years because I just got tired of going to doctors who simply couldn't understand my symptoms, even though I had tested positive for Lyme in 2001.
I agree 100% with Keebler. Find a good ILADS LLMD!!!
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Regarding Western Blot results, if a person had lyme in the past, the Western Blot will show some positive bands for years.
I just discussed this with my lyme doctor a week or so ago. So, a doc who knows nothing about lyme does a Western Blot on a person who definitely had lyme in the past--big waste of everyone's time and money.
You have to do other types of testing on someone who had lyme in the past to determine whether they have it again or still have it. For example, the My Lyme Immune ID test. That is what my lyme doctor is now using.
I got rid of lyme over 7 years ago, and then was bitten again with bulls eye and treated again for 1 month about 4 years ago. An ENT who doesn't know anything about lyme ordered a Western Blot on me (even though I told him I had had lyme twice in the past) and the IgM came back positive. My lyme doctor laughed!
So, the best way to find out your lyme status is to go to the best lyme doctor you can. By interviewing you, the doc will know if you need a test or if you need treatment. If you do a trial of treatment and react to it, that is proof that you still have lyme disease.
If you didn't go to a real lyme doctor in the past, your lyme is most likely resurfacing. See this quote from the Burrascano Lyme Treatment Guidelines:
"Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word. So, while the bulk of this document focuses of the more problematic chronic patient, strong emphasis is also placed on earlier stages of this illness where closest attention and care must be made." (page 3)
Also, good luck finding a lyme literate neurologist. I don't know of any.
The symptoms of neurolyme are such things as: encephalitis/encephalopathy, meningitis, lots of cognitive symptoms (brain not working right--memory, mood, and thinking ability). And brain scans will show abnormalities such as: in Lyme encephalopathy- global hypoperfusion (may be homogenous or heterogeneous).
Here is a list of neuro symptoms from a lyme doctor:
"Neurological symptoms associated with Lyme disease are all over the map. They do include tremors, fasciculations, weakness, myoclonus, Parkinsonian features, MS features, ALS features, vertigo, dizziness, alterations in hearing- vision- sense of smell or taste, neurologically mediated stiffness, sleep disorders including sleep apnea, loss of balance, all manner of speech disturbances and psychiatric disorders as listed elsewhere, stiff neck of the meningitis variety, neurologically mediated changes in bowel and bladder function, pinched nerve syndromes, neurologically mediated pain syndromes of all sorts, trouble swallowing mediated by changes in the brain, stroke like symptoms, a wide variety of neuropathic symptoms not listed here, changes in heat and cold perception, HEADACHES, exacerbations of preexisting migraine or tension headache, ADD syndromes, personality changes, neuromuscular syndromes causing muscle atrophy and weakness." (from LymeMD blog)
If or when you go to a lyme doctor, you must take a complete list of your symptoms with you. That will enable the doctor to make the diagnosis, so spend a lot of time working on your list. You can look at the Burrascano Guidelines, pages 9-10 to help you, and also the list given above.
Wish you the best. Dizziness can be really terrible and debilitating and definitely makes it dangerous to drive.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thankyou everyone and the ID doc I go to is one I found on this forum. A few recommended him. He did have me on long term antibiotics, suprax and azithromycin for about 8 months, but the thyroid cancer treatment interupted that. The symptoms of the two are so similiar does make it difficult to find out what is going on. I think I may need a second opinion from an LLMD in my area but I also need to get the thyroid issues under control. No chemo, its treated with radioactive iodine then they have to suppress your tsh for the first year and that makes you severely hyperthyroid. My thyroid and lymph nodes were removed and I am scheduled for another biopsy on an abnormal lymph node that showed on my ultrasound. I guess its one thing at a time. I don't know how else to handle it.
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