From my Neurology Doc' follow up on blood testing:
* Increased Homocysteine levels,
* A1c up slightly* supposedly [all my other testing for this is lower now, w/ Bg average of 110].[perhaps a Quest lab fluke?]
* and Serum Folate level was low 4.5.
The research I found on Net, says that as my diet has a good bit of red meats[as well as fish and fowl] that may explain the Homocysteine rise.
The only actual numbers we were given was the low folates. Still trying to access my lab test at Quest.
MRI, the Drs, PCP and Neuro' both didn't seem to think that these issues following were a problem...
Impressions: Chronic white matter changes, left mastoiditis,and etc. Neuro' said just some signs of aging . Thing is I had those 'signs of aging'. 1o years ago...
So I'm not sure what to think...
Back to the Folate, Homocysteine, info', Net research said low B-12, which I take Methylcobalamin daily.
I don't eat much carb, but what I do is GF,and has some folate added. So I figure it may be the diet.
There was a note about coffee from net research,odd thing, I was on a reduced coffee month all of February,and had blood test march 1st.
Still working on backing down on coffee, just in case.
I am wondering if this is MTHFR related, just a suspicion, I have migraines, have problems with many medicines,including most ABX. Makes treatment a challenge.
PCP[not LLMD per say,but curious,from back East ] ,wants LabCorp to do the actual Western blot,as he is suspicious that it could be Lyme,even with odd negative testing... will see if they cooperate.
Think that's it for medical updates at the moment.
Headachey so gonna rest for now.
Jus' Silverwolfi
Posted by Silverwolf (Member # 9196) on :
Hi there,
Tho'ts, ideas,anyone??? I hope some folk that have some experience with these issues may reply.
I am really suspicious that the LD Borrellia is causing more and more issues. I'm also looking more at the Mthfr issue.
Jus' Wondering Silverwolfi
Posted by Lymetoo (Member # 743) on :
I don't know much about folate or homocysteine. I know I SHOULD, but I don't.
Even if you take B12, you could be deficient. Please watch this when able:
If it's MTHFR related, you need methyl folate as well (active folate-5 MTHF ). This can absolutely be cause for high homocysteine levels. Homocysteine is converted to cysteine which in turn helps make glutathione your master antioxidant. In the methylation process , if your coenzymes can't make this conversion you end up with high homocysteine. B6 is often taken as well in folate form which I myself think I need to add. Lab Corp can test for MTHFR if you have insurance and don't want to pay for 23andme. Definitely worth asking for the test as it is more common than you may think.
Posted by amberlin96 (Member # 11535) on :
Migraines can also be caused by one of the MTHFR defects. I forget which one though. I am heterozygous for both C677t and A1298.
Posted by dbpei (Member # 33574) on :
I have high homocysteine levels and don't eat red meat, silverwolf! I have the MTHFR mutation menioned above and it is likely related. My folate levels whave been normal though - as are my glutathione levels. It is a mystery.
I take B12 orally and make sure I take methyl folate as opposed to folic acid. I also eat a lot of green leafy vegetables in my diet along with some fish and fowl.
I haven't had my homocysteine levels checked in a while. Hoping they are closer to normal now, but I won't know until they are tested.
Posted by Silverwolf (Member # 9196) on :
Tried to put up a reply here, and lost it. Seems to be a system glitch.
<<<<< Lymetoo, amberlin’,and dbpei >>>>>,
Thanks for the info’ and the link too, will try to finish a better reply later [Txc’ is helping me do document style in case it won’t post this time.
We have a respiratory bug, right now,both TxCoord,and I. I had seizure/spasm type problem with bad headache lastnight. So am worn out.
Jus’ Silverwolfi
Posted by bluelyme (Member # 47170) on :
Do you have cpn?...lomatium herb helped with some respitory issues ...i hope you get some relief soon...those mri results sound like lyme complex vasculitis as for b12 i am low on iron and having b12 absorption issues trying paba maybe it is babs or bart stealing it..i have mild throbocytopenia too...
Posted by Silverwolf (Member # 9196) on :
Hello <<<<< bluelyme >>>>>,
Sorry it's so long between replies, thanks for the info',as far as I know no CPN. I suspicion Myco' pneumonia tho'. I don't think one completely gets rid of it ?...
TxCoord and I are on our own here, no LLMD's, and Amerigroup Medicaid mostly pays for Seriously emergent/catastrophic situations. It's a real mess.
The Vets'Admin. doesn't believe Lyme can go chronic or be a serious issue. So TxC' cannot get help thru them. And with a negative ELISA[ yeah I know, worthless] Medicaid isn't liable to do anything to help me [I am not eligible for any VA anything, as TxC' isn't on 100% Disability].
Will research the herbs etc. have to stop or this prolly wont print in reply.
Jus' Silverwolfi here
Posted by Silverwolf (Member # 9196) on :
Sorry if I don't make sense,today, I hate respiratory bugs...
Can't think straight... Jus' Silverwolfi
Posted by bluelyme (Member # 47170) on :
No problem...id look into that quest labs has myco ,cpn rest if gp will order it ...buhner has pneumoniae protocal i can find it if you like...
Posted by sixgoofykids (Member # 11141) on :
High homocysteine and low folate can be MTHFR related.
Posted by Silverwolf (Member # 9196) on :
Hi <<<<< bluelyme, and sixgoofykids >>>>>,
Thanks for the replies, tho'ts and ideas.
Still fighting the respiratory ick, several here,have had to go to hospital as this mess turns to walking pneumonia.
Right now,it has added some intestinal issues for me. Restroom run to's a lot. Praying I don't sneeze on the way. Sneezing hurts anyway with a healing tooth removal site.
Then there's the throat tickles which lead to coughing, and running back to the restroom... you get the picture.
In more pleasant news, I have Buhners co-infection book,as well as healing Lyme.so I can at least see what might help if I have Myco' issues.
Have to wait a bit, to see if PCP will order more tests. He want Labcorp to do a -real- western blot, which I'm not sure will tell them anything really. I know their Elisa is worthless.
And I doubt IFA is any better, Neuro' ran that thru Quest, a negative they say. Haven't seen all the blood work copy yet. I did find out that my A1c was 5.8, the best I've had since 2008, for me,not high a all.
Homocysteine was high at 12.8,with low folate at 4.5, with , my odd reactions to many meds'and ABX, I do suspicion the MTHFR issue.
Have to either get Amerigroup medicaid approval for any testing,or pay out of pocket. That'll have to wait 'til we get CV joint on the drivers side front fixed. We already had one tire shred, front drivers side. Tight fixed income is no fun.To many of us know what that's like.
Between my medical issues,and TxCoords, we are having a bit of a rough go of it all. Basically It is Drs.appts., and groceries, and Txc'does Wed. night, music leader at church,ad sings/plays guitar with choir on Sundays.
So that's about it... right now i lisp a bit,and cough and he limps...well we both limp. We are at least glad to have a roof over our heads,and food, it got rainy today and really windy last night here in Vegas.
Better close and see if this will post, else I'll be writing a novel and it wont enter and print. Jus' Silverwolfi here
Posted by amberlin96 (Member # 11535) on :
Silver wolf , hope you are feeling better. For me, I had been tested back in 2007 for the MTHFR and the info available today was not then. They actually advised folic acid.
Also, when going through some of my old records I found the results really not that long ago.
I had been doing pretty well the past 6 out of 7 years.
This past year started having issues again to the point where it was absolutely making my "normal" drop down to a point I couldn't handle. My llmd had retired and I had to go in search of a new one.
Anyway, when I came across the lab report in records, I had completely forgotten about it. So , I started researching.
I took it upon myself until seeing new dr to begin with the methyl folate and methyl b12, however I was cautious and kept the doses low. Folate 400 mcg and 1000 mg b12, every other day.
This was for only a few weeks and when I had labs done it seemed to do well as my homocysteine was in normal levels. Right about middle range.
Just something to think about. After telling my new llmd she said at that dose daily I shouldn't have any problems, but I still kept it at every other day.
Good luck.
Posted by Nula (Member # 38409) on :
What meds are you on? Various drugs can cause your folate level to drop (e.g. Malarone). In turn, your homocysteine would increase.
You might need B12, B6, folate, and possibly even betaine (trimethylglycine) to lower your homocysteine levels ...
Posted by Silverwolf (Member # 9196) on :
Hi <<<<< amberlin', and Nula >>>>>,
Thanks for the replies, not on much meds wise, but taking a number of supplements, Mostly from Buhner Protocol. Modified, and very low dose.
I do take a BP med, and something for IC issues and allergy/sinusitis. For a few days i will be taking generic Macrobid for a stubborn bladder infection.
Really wondering about the MTHFR, possible Mast Cell Activation, and somethnig called AMRF syndrome, that can cause Myoclonus issues and Kidney Urinary tract problems...
[ in atypical cases one wouldn't have Renal failure completely,but would have kidney, bladder UTI type infections.]among various problems.
I suspicion that LD, especially hidden seronegative, where non-LLMD's wouldn't suspect is behind what ever all it may be.
A little out of it,from Bladder infection,strong ABX, headaches and such,so hopefully it is making sense.
Not sure what to do about it all yet w/o an LLMD, researching... [sheesh,I sound like an old Star Trek ships computer... "working"... " researching...".
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