My husband has been sick for close to 8 yrs. with a mystery something we are calling MS, for lack of a better diagnosis.
No memory of a bite or rash, but started with a bad "allergy season" and a fever with optic neuritis.
Since then, symptoms have included Bell's Palsy, urinary incontinence and urgency, constipation, various vision problems, difficulty with walking and balance, fatigue, irregular MRI's, and excessive back and abdominal pain.
4 Western blots have given different results and 2.5 yrs on and off doxy and others have yielded a mixture of side effects, marginal improvement, then major issues.
Our current doctor is LL, but also more of a generalist. He seems a little stumped, and I feel it's time for something new. Here is the question:
Is this lyme and/or coinfections, and is a true LLMD the best next stop? If not, what else is there? If so, who? All support and stories most appreciated.
Many thanks to all!
Posts: 10 | From Brooklyn, NY | Registered: Nov 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome to Lymenet!!
A true LLMD might be your best bet.
Fatigue and imbalance can be babesia, but can be Lyme. It's so hard to tell because they all overlap.
If he's been off an on meds, that probably hasn't been consistent enough to knock out the infection.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I will say that all of those symptoms are shared by a good # of lyme patients but your husband would need to see a LLMD for differential diagnosis to rule lyme in or out. It's definitely worth seeing a LLMD.
Welcome to lymenet, wellwife. And stay well!
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
wellwife, I see a NYC LLMD...you'd be much better off finding a LLMD as they can understand and sympathize with your husband's issues and at least start him on the right track to feeling better...
It can be a dreadfully long process (between waiting for appts and waiting to find right combo of meds, etc.), but ultimately you'll be going in circles unless you have the right doc.
Of course, this forum is very helpful too. Your own research can be your best ally when you or the ones you care about have mysterious conditions.
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Since you are in New York you are already close to one of the best testing centers -- have a SPECT scan done at Columbia University. While not definitive for Lyme and company it could at least offer some indication if tickborne illnesses are causing hypoperfusion or vascultiits which would not be MS symptoms.
Lots of LLMD's in New York to choose from -- one to avoid is the neuro Dr Y who does not believe in chronic infection and thinks IV IgG is the magic bullet. Hubby and several other LymeNet members have had bad experiences with this doc.
Reports are somewhat mixed regarding the lady neuro at Columbia. But since you are in the city that might be a possibility. You might consider doing the full neuro psych work-up with Dr F at Columbia.
Hubby has also been sick for 8 years and has very inconclusive tickborne tests so I can definitely relate to your situation.
One other option is a bloodslide from either the Fry Lab or Clongen -- many Lymies are testing positive for various bacteria that have not as yet been identified -- a bartonella like organism or unidentified mycoplasma or even a new species of babesia are all possibilities.
And yes another LLMD is probably a good idea.
Best wishes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks for all the responses, everyone! For those of you recommending specific docs, LLMD or neuro, in the city, can you please PM me names and contact info? I think weve probably got enough knowledge and diagnostics for the moment, but need a good doctor to get us on the right med trail.
"Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
This is true regardless of whether it is IgG or IgM.
From around 2005:
"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93." ....Dr C
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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