LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
so I have so many sx right now but I don't feel lyme-y or really other TBD either, but my symptoms keep coming back to mostly neurological and I keep thinking its pernicious anemia or just B12 issue.
I can't seem to get any dr to address this. am I asking wrong drs? I think so, but whom do I ask?? should I go to a neurologist that really knows something? I don't think I can get enough B12 on my own just taking my
sublingual supplements. I was taking tons last year and then my level blood was very high and drs told me to back off of it. I keep forgetting everything, but now after getting "new" sx again I put them into sx checkers and pernicious anemia pops up and reminds me that
this B12 thing might be something afterall. but how do I get the help I need?
I have read so much about it, but my blood is always good levels for everything and I am worried. is it something else??? like vagus nerve? or MS (some new drs have suggested which I don't buy)OR any other thing?
the tingling in my extremities has gotten about 50% worse. im started to get concerned
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I CAN just take the high doses again - of a good product I do- but then if it does help my sx is it enough? I know the interal damage can't be seen and takes a long time
I mean without a dr behind me the likelihood of real treatment is nil, and what am I donig by just staying on the sublinguals I take even if mega dosing?? just buying time??
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
I don't know why doctors are doing nothing about this issue. It's rampant and is probably part of the reason we have so many frail elderly people. One of my nurse friends told me she used to be responsible for giving nursing home patients B12 shots.
She said they all needed them, but for some reason doctors have stopped prescribing them.
I think it's because insurance will no longer pay for it. The testing for pernicious anemia is not what it should be ..from what I hear.
So .. it's being overlooked.
Be sure to watch this .. It gives the proper testing at the end:
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
OMG Lymetoo!!!!!!!!!!!!!!!!! what a great video, BUT...... I am still watching. I hope there is hope for me!! Iam so scared I will/am permanent damage.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also keep in mind that as long as BABESIA might be an issue, RBC anemia is likely to be a factor.
If babesia is on board, be sure that it's properly attended to, fully, for long enough with a combination approach, never just one Rx or one herb. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
the problem with me is that my blood is always "normal"....
I was said to have babesia and was treated, but good advice Keebler
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please stop giving any doctor validation when they make a statement about which they have no knowledge. Regarding babesia, don't even converse with anyone who is not educated about it. They just can't know.
When you say "they say this" and just leave it at that, it seems that while you may know they can't know, you are still adhering to their evaluation and letting it go. Babesia can take a very long to treat and it requires various combinations / rotations, etc. Only a LLMD or LL ND is able to advise you on this.
Still, if your B12 levels test okay, that's a good thing. If RBC regular tests do not show anemia, that is a good thing. But also ask them to assess if your body is absorbing it and utilizing it. That's a different test.
and there can be issues that only a LLMD or LL ND might understand.
But profound fatigue or other symptoms that might match up with B12 / anemia issues also could be other things - especially with lyme / TBD.
As for the other things that are not able to be tested with the typical medical system - or things they don't know about regarding tick borne disease, be sure to talk to your LLMD if you have one. Ask them for assessment for what's going on so that they look to all the variables.
If not, read all the books you can by ILADS educated LLMDs and LL NDs to get a range of expertise.
Stephen Buhner, a LL master herbalist, has excellent books. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I recently read Could It Be B12?: An Epidemic of Misdiagnoses. Amazon is selling used copies for less than $6.
One point the authors make very strongly is that the cutoff level for "normal" is much too low. So if your B12 is below 500 and you have symptoms, you're likely deficient.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, I read that too Carol. - the levels here are too low. mine seem to go up and down, but my pcp doesn't want to keep checking them so there I am anyway- stuck.
had recent apt. with gene guy and heput me on a methyl assist homeopathic liquid that supposedly opens of the pathways so I can regain ability to absorb B12 again,e tc..
then after a couple weeks wants me to take B12 supplements, but im afraid they wont be eonough for me. but I guess ill give this a try. i have nothing else to do right now because im out of cash and waiting for some miracle to get to a lyme dr.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
the gene guy also was talking tho me about MAST, which btw *I* was the one who introduced him to it several months ago- before that he hadn't heard of it, and I only learned that from here on Lymenet, so THANK YOU EVERYONE HERE!!!
he said he was really working on this and thinks it is the major root to all my problems. I wan't to behopeful and do like he says, but im so tired of getting blasted with a dead end.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic