posted
Hello: I saw neuro which now is back to thinking I may have MS. He said because of the white spots on the brain and my symptoms. Do people with Lyme have white spots on brain also? I have given up going to llmd for now because he refuses to treat me for Lyme. Dr. H's office has yet to return my calls.Therefore I have no llmd to go to ( that's close to me). Neuro wants an ncv test ( not the emg with needles) and probably a lumbar puncture.
Posts: 54 | From catskills NY | Registered: Jun 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Yes, people with lyme sometimes get white spots on brain. And they can regress with lyme treatment.
There is no test that will prove a person has MS. Definitely not a lumbar puncture, so you should be thinking about declining this.
Don't understand why lyme doc won't treat you for lyme. What is the reason? Is it to do with your symptoms, testing, history, or is it political because the state medical board is trying to shut down lyme treatment in NY?
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Hi poppy: I tested negative for Lyme on igenex but I had a rash in 2008 and many symptoms that look like Lyme to me. I went to an llmd a year ago ( he tested me ) but he says I don't have Lyme therefore he keeps telling me to come for appointments to see how I am doing but no treatment protocol.it probably is political.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Topic: Could (misdiagnosed) MS be Lyme? (Yes, indeed . . . many links explain) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 1. Lumbar puncture is NOT needed. As others state, there is no test that can prove "MS" and "MS" is not one disease with one cause but a cluster of symptoms with multiple causes and influences. Lyme is one of those.
There are many cases of "MS" turn-a-rounds with successful lyme treatment.
2. AVOID STEROIDs if offered as they are so often given to those with "MS" and that can make any infection much worse.
3. Regarding your past tests: were ANY bands positive on either the IgG or IgM Western Blot? Even one?
Was the lab draw, the timing regardin shipping, receiving it at the lab, etc. all under the best conditions for the most accurate test? See "27 Reasons" below.
Still, with rash and symptom history, it's important to understand the limitations of tests.
Diagnosing Lyme Disease (&/or whatever else is going on) other tick-borne, other chronic stealth infections (including parasites) and certain conditions disussed.
Western Blot explanation here, too. Very important to read this.
RASH PHOTOS can be compared with the rash you had (athough few really get a rash, when so, not all lyme rashes are bulls eyes)
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
[ 05-28-2013, 07:07 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you gluten-free? Gluten can cause brain lesions and all kinds of neurological issues.
Although in this and in past posts of yours, it's clear that you have not been seeing a real LL MD. Had you been, they would have suggested a gluten-free diet, most likely, as that really helps be able to tackle lyme.
For some insight into just part of the reason for being gluten-free, web search: gluten, brain lesions -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have 2 lesions on my brain because of Lyme...I also had the lumbar puncture when I didn't know any better....please don't waste your time.
what was funny (not really) about it was that the neuro doctor said it could be lyme but decided to call it a somatic disorder instead...i.e it was in my head...she was kinda right...it was in my head...BACTERIA!!!
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
Mycoplasma pneumonia can also cause them.
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
On the western blot IgG... everything negative except for IND on 41. On western blot IgM ...negative except a + on line 41 and a + on line 66. There are some stars on left side of the numbers but I don't know if they mean anything. And negative on the bartonella. I am not on gluten free diet. Dr. B is an llmd but I don't know what has gotten into him and why he had me going there every 3 to 4 weeks without treating me. As a matter of fact I thought I was being treated except that it takes time and more tests needed because Lyme is complicated. The only way I figured out something was not right is because I kept coming to this forum and people were telling me my llmd should be doing this and that etc. I appreciate all the help i get from everyone.
Posts: 54 | From catskills NY | Registered: Jun 2008
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I would not pay a Dr every 3 weeks just to say "Hi".
If an LLMD diagnoses you with Lyme clinically, they start some form of treatment.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
All the lyme docs in NY are under the gun. Did you read the lyme articles in the Poughkeepsie paper? They have been posted here.
IMO, this could be the reason you are not getting treated.
If the state medical board has its way, just about all the patients of these doctors will be in the same boat with you.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
NY. needs to vote their Senator Shumer or whatever out of office, he is why your not getting treated.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by 8man12: NY. needs to vote their Senator Shumer or whatever out of office, he is why your not getting treated.
No, it is NOT Schumer's fault! He's on our side. It's more complicated than that. But, we sure as heck need a dr protection law!
Unfortunately, very few people know that this is going on. I was told a while back that the drs didn't want the patients to get involved---which surely was coming from their lawyers. Bad call. Very bad call.
Posts: 3771 | From around | Registered: Mar 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Please see the thread in activism about NY legislation. No good complaining about a doctor and then doing nothing to help make the state safe from them to practice.
Posts: 2888 | From USA | Registered: Mar 2004
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