posted
I have to go see a neurologist for the brain lesions to rule out MS for social security. He is not an Lyme neuro so I will just listen to what he has to say. There are more symptoms that show MS and the igenex was negative for lyme so SSD caseworker said to see a neuro for MS to see what he can give her to bring to the SS doctors.
I am really afraid of having MS...I am afraid of having lyme. I am just plain Afraid and tired of everyone swaying my mind back and forth.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
How are you doing with your treatment?
Are you improving?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Go ahead and go to the neurologist. If he diagnoses you with MS that may help you win your case for SSDI.
If you are diagnosed with MS you do not have to stop Lyme treatment. I've heard that many people with MS symptoms get better after treating Lyme.
You also do not have to accept the mainstream treatments for MS (usually immune suppressing drugs). Look into getting some LDN instead. It seems to balance the immune system and can be very helpful with MS. http://www.lowdosenaltrexone.org/Posts: 5237 | From here | Registered: Nov 2007
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posted
thanx sammy. I cannot afford the or travel to the LLND...I will see what this doc says. Weird that you can have both things at once...praying not.
I know to tell him nothing with steroids and I dont want a spinal tap!! At least I will get examined. My LLMD did NO examination at all at any visit for me and I was told on here that they usually do. He only spoke to me for 2 hours? Something is wrong with whole picture.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i really wouldn't worry about having ms. i have a friend who was absolutely certain she had ms. treated for lyme and all her "ms" symptoms disappeared.
keep your hopes up. i've been there. no ms, just lyme.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
mom lyme...I am not improving. I have gotten worse in the 4 months of treatment. Now I hve pain in all my muscles and joints which I did not have to begin with.
My main issue was vertigo and cognitive issues. THe MRI showed lesions conducive to MS or lyme. I went wtih the lyme but igenex is negative even though LLMD said clinically positive? Things go worse instead of better.
Now I am losing feeling in my hands and cannot get myself off a chair from weakness in my legs muscles. I drop everythign I try to hold? All I get told from LLMD's staff is to take magnesium and Vit D (always took that) so they said add calcium to it?
There is something more to this whole thing, so gotta check it out and see.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Keep us posted. I may be right behind you - I feared going back to my neurologist for the same reasons no steroids - and do NOT want a spinal tap! My symptoms are a lot like yours and MRI showed same as yours. The weakening muscles can be very scary. The constant head issues very dibilitating.
Hope to find what happens at your Neuro appointment.
Posts: 348 | From MA | Registered: Dec 2010
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I will let you know after I see him on monday. Do you have constant headpain also? I have issues with remembering the name of a person that I see all the time and now I cannot spell many simple words that I never had an issue with.
Legs are wobbly like bambi taking his first steps. Hoping to get more of an answer from him than I have now and I pray he knows something about lyme? The ER doc who took the MRI sugggested I see this doc. He knew alot about lyme and said how the symptoms mimic each other.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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quote:Originally posted by annier1071: mom lyme...I am not improving. I have gotten worse in the 4 months of treatment. Now I hve pain in all my muscles and joints which I did not have to begin with.
- I felt horrible for a full year and then slightly better on year 2. It's rare for anyone to feel "better" in 4 months.
Keep going because the alternative is not good.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Few will have improvement in four months, unless you were treated the day you were bitten and even then some people have a real hard time.
It often takes a few years to really see the light at the end of the tunnel.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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MY husband is in the same boat, but we also have 2 separate Igg and Igm confirmations- the only lab test our neuro did came back negative, and it was done in between the 2 others. So for the neuro there is no lyme only MS!! He also has bambi legs, joint pain and major drunken sailor first day back on land issues :-)
Be ware of varying clinical sensitivity from hospital labs (not being paranoid either- i think)
Pain, joint stuff etc... can also be from various individual responses to abx tx-(herxing, I have no idea-just speculating!!!!) as abxnomore said, 4 months isn't long!
Hang in there- it's a bit of a puzzle. I was also told to look at CPN issues- and the misdx of MS.
Check out Dr. W's link on this and there is more to read about this story
I am not sure if I am reading your post right. Aer you saying you had neg test from neuro but two positives from somewhere else?
I have negatives from 4 regular docs and 2 times from igenex. Negatives on CD57s also. My hands are tingling so bad and many new symptoms have come up now.
I will see what he has to say and let him look over the MRI's CT's tons of blood work, nerve testing etc. I will not take any medication that without talking to my LLMD first if needed.
Thanx for all your support. MS is being questioned again by my SSD caseworker since it is written on my last two MRI's. They will refuse me if it is not checked out, so no choice I guess.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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I am not sure if I am reading your post right. Aer you saying you had neg test from neuro but two positives from somewhere else?
I have negatives from 4 regular docs and 2 times from igenex. Negatives on CD57s also. My hands are tingling so bad and many new symptoms have come up now.
I will see what he has to say and let him look over the MRI's CT's tons of blood work, nerve testing etc. I will not take any medication that without talking to my LLMD first if needed.
Thanx for all your support. MS is being questioned again by my SSD caseworker since it is written on my last two MRI's. They will refuse me if it is not checked out, so no choice I guess.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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I have all negatives so far except for my MRI which is diagnosed as either "MS, Vasculitis and not to rule out lyme disease"
Yes I have multiple minimal white lesions and multiple signal intensities. I had an CT and MRI last year and all was clear. This just showed since I got so sick in June.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
| IP: Logged |
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