posted
I had my normal "follow-up" appt with my PCP last week and just happened to ask for him to do some blood work, because I have been trying to eat better and was just curious as to where my cholesterol, etc. stood...
His assistant called me at home Friday nite to tell me that I am seriously B-12 deficient....
She didn't tell me what the level was...she just said that it was serious and that I had "none"..
I already had an appt set up for this Tues. to get the results of the blood work and x-rays that I had done on my left knee, which has been giving me problems lately.
Now, I guess, I will be starting B-12 shots on Tues also.
I have a question, though... Since I have never been officially diagnosed with Lyme and the one ELISA that I had was negative, is there a way to know whether my symptoms are actually Lyme and not just B-12 deficiency??
I have not had any other Lyme test (Western Blot, etc) because I do not have an LLMD yet and my Medicaid won't cover it, just to have it..
I do not ever remember a tick bite, though I do know I live in NY and I do remember having a bulls-eye rash on the inside of my thigh when I was about 17...
From the research that I have done since finding out, I know that B-12 deficiency seems to be a common problem with Lymies, but it also seems that B-12 deficiency can also "mimic" the symptoms of Lyme, MS, Lupus, etc.
Is there a way to tell for sure what is what?? Or do I just start taking the shots and go from there??
I would appreciate any answers anyone can give me.. Thanks Ellen
Posts: 50 | From Port Crane, NY | Registered: Apr 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Were you ever treated for that bullseye rash? If not, a bullseye rash is diagnostic of Lyme. It might be good for you to read Dr. B's diagnostic guidelines on www.ilads.org.
I would see an LLMD for proper diagnosis and treatment. At the very least, get the IGeneX Western Blot done.
With a bullseye rash and knee pain, I would be highly suspicious of Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
No, I was never treated for the rash, because, at the time, I thought it was nothing more than ringworm...
I was 17 yrs old and totally embarrassed, plus back then (I am 45 now), Lyme was never heard of...
I have been diagnosed with Fibromyalgia, but not the Lyme. It was only through research when my son was bitten about 6 mos ago. that I put the conection together...
I can not afford to go to a LLMD right now. My Medicaid will not cover it and I have been out of work because of it since 6/06.
I have been saving the money to go see Dr. B in NY, as he is the closest to where I live, but until that time, my PCP has been good about trying to help me out where he can..
Until the time I can afford it, I have been doing my own research...at least what I can when I feel up to it, but as I said, we don't have much money and doing anything outside my Medicaid coverage is pretty much impossible..
I appreciate the reply and would still like to hear from others.. Thanks again Ellen
Posts: 50 | From Port Crane, NY | Registered: Apr 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
a bullseye is diagnostic for lyme in and of itself, so i would say you probably have lyme disease (though i am not a doctor).
lyme can cause B12 deficiency.
is your current doc willing to put you on antibiotics for possible lyme? that would be ideal - a trial run, at the very least.
if not, consider purchasing stephen buhner's book 'healing lyme' and giving his herbal protocol a try (all the herbs can be bought cheaply and in bulk from 1st Chinese herbs, if you're willing to encapsulate them yourself).
also, the B12 shots should boost your energy a bit and help you feel a little better in the meantime.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
jimmy, I don't like needles so I've been doing sublingual B-12 for 4 yrs. Little did I know then that when you are very deficient you need much more than the 500mcg I was doing daily.
A year ago I started doing 1000mcg, then realized that I may need more and went to 2000mcg daily. Now I'm doing a B-12 3000mcg which is a methyl superior sublingual (melts under the tongue).
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Obviously most of us would say your best shot at this is to see a LLMD but we all know very very well that this is very expensive and just isn't what some can afford to do.
On the other hand, our lives are at stake and we can't afford not to do it. But with that all on the side, is there any way that your PCP might be open minded enough to run an Igenex blood test?
I know that some have actually had doctors that would humor the patients and sign off for it and if you could atleast get the blood work done and if it by chance comes back positive (and even that isn't a given even if you have lyme), but if it does, perhaps he would be open to treating you and getting you on the right path.
Regarding the low vitamin B....many of us come up short in many of these vitamins due to lyme. In my case, I thought I was coming up short due to fibromyalgia and found a N.D. that was doing Myers Cocktails which is an IV that has various vit b's, magnesium and all sorts of water soliable vitamin and minerals that I have been doing.
It won't cure the lyme but it is suppose to help give the strength to keep fighting it. Hard to say how it's working since I don't know where I would be without doing it. But I keep plugging away.
I do hope you can find a way to get on some antibiotics and know that's the right path to working towards feeling better. It's a long road but I hear it's totally worth it in the end.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Hi Jimmy, I would agree with Cathy, ask your PCP if he/she will run the diagnostic tests.
With the right info in front of him/her, 'they' might be willing to follow another drs. (a LLMD)advice on how to start treatment once you explain your financial situation to them.
The bulls-eye rash by itself is enough to be dxed with LD!! See if you can start "preliminary" abx maybe? with your PCP.
Good luck!! and hang in there.
-------------------- May we all find peace one day and may peace prevail on earth ~ Traveler Posts: 66 | From traveling the U.S. | Registered: Aug 2007
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My PCP has been wonderful, but there is only so much that he can do, mainly because he technically is only an RPA (Registered Physicians Assistant), but he has so far gone "above and beyond" what any of the other numerous docs have done.
He ran the ELISA for me, but of course that was negative, which puts me in the situation of not being able to have a Western Blot covered by my Medicaid.
I have taken him info, including the ILADS Guidelines to read and he has offered to prescribe me 30 days of Minocycline if I want it, but I am not sure that I want to start something and not be able to finish.
To me, it seems that starting a 30 day regimen of antibiotics and then not be able to get any more would be worse than not doing it at all.
Also, with his very limited knowledge of Lyme, if I were to have a problem, he would no clue as to what it could be.
To me, its just not worth it. At least not until I can get to an LLMD.
My B12 count was very low (150) and I have started the shots. So far, the only difference I notice is that I don't feel quite as unsteady, but I am in hopes that as I continue the shots, some of my other problems will ease also.
The ultimate to me would be to at least feel strong enough to maybe get back to work and then I could start saving even more money for the LLMD.
While that may be unrealistic, I keep hoping...because I am not one that likes to be kept down. Especially by something like this.
But thanks again all. I appreciate all the info I can get. Ellen
Posts: 50 | From Port Crane, NY | Registered: Apr 2007
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posted
There is a very good book called "Could it be B12" the author talks about B12, lyme and MS all mimicing each other. Alto a web site Pernicous anemia society has good informoation about b12 deficiency.
Posts: 23 | From n.y. | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cat65 - thanks for that book title. I sure feel so much better with B12 shots. I need to see that book you mentioned. -------------
Ellen, you can call Igenex labs and ask what type of insurance they take. www.igenex.com If you do test further, ask Igenex for specifics regarding medicines - yes or no - for what time frame before or on day of tests. You want the most accurate test.
As you say cost and access to care and Rx is tight, you might check out The Road Back Foundation at www.roadback.org
lower dose abx . . . spread out. Your PCP might be interested in this. Seems to help many.
If you take minoc, be sure to take your B vitamins - not w/ meds, but each day. The B-complex (be sure enough B6 in it) can help your brain - and even your ears. Milk thistle can help protect your liver but, again, space it apart from meds.
In addition to the Buhner book mentioned above (very good), Amazon - or your library - might have other books on complementary approaches.
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