Pins and needles -starting to get worried- please help

Looking for advice. I’ve been at this for over 6 years. Done conventional abx and herbs over the years. I think I hit lyme pretty hard (few months of iv rocephin last spring). But now I have a new symptom in my left hand/arm. In October I started to notice weakness and pins and needles when typing but now it’s almost all the time and I’m rarely typing. I still have all over vibrations, pins and needles in my right foot (first symptom that’s never left only comes and goes in severity) and pins and needles in tongue (been dealing with this for about 5 years - also come and go in severity). So what’s with it now in left hand and sometimes arm?

Anyone have any ideas— it’s starting to scare me. Thinking maybe ms. But don’t want to go down that road. Any suggestions please.

Two things I haven’t tried are disulfiram and BVT. Any advice on these.

I really think Bartonella is my issue now. What’s weird though is that I don’t have the pain on the bottom of my feet anymore. That’s been gone a long time.

Please any help is welcome. Forgot to mention I started the Rawls program this past fall but due to expense have been taking it intermittently.

Thanks everyone!

Have you had b12 serum checked? Not uncommon for those with chronic illness to be deficient. It’s important to catch early because if it goes untreated for awhile it can cause permanent damage.
Don’t start supplementing before test because it will skew results.

Can you elaborate on “all over vibrations”? Does it feel like a cellphone is inside a part of your body and on vibrate?

dcd2103 feels like I'm vibrating, yes like a cell phone but all over my body. Sometimes, under stress it's worse than other times. Every once in a while it will shut off and I feel somewhat normal but then it comes back. I've had this symptom for years.

Definitely hear you about avoiding unnecessary specialist visits.... So stressful!

I think for a lot of us new symptoms can crop up over time. My symptoms are very different from those I had at the beginning, some have disappeared, some have waxed and waned. For me, peripheral neuropathy became an issue following a virus in fall 2018, so a little over a year ago. That was about three years into my illness, and I had not experienced it before that. So the illness could be moving around, busted biofilms could be releasing active infection that settles in new places, a virus could have weakened the system, or a herx could be bringing out new things....

I don't know exactly what's going on for you, obviously, just saying that a new symptom appearing now is still very likely to be more of the same Lyme stuff. My guess is that the Rawls combinations (love him) are hitting Bartonella for you in a new way and this is a herx. You also said that you had this sort of nerve sensation in your tongue for five years, so to me it sounds like the progressing of an old symptom. I don't mean to be dismissive at all - progressing symptoms are the last thing you want to notice six years in when you are hoping to be saying goodbye to symptoms! Just saying it sounds like more of the same.

Neurologists in my experience are happy to order an MRI. You can rule out MS this way, and there's basically no risk without the contrast (not necessary for an MS scan). You would not have to mention Lyme, or you could say that you had it (past tense) and have had this symptom since.

Hope you find some relief soon.

Thanks dcd, this isn't something I want to believe is true but I should probably look into it. I appreciate your help. I've been to two neurologists in the past 5 years. The first time when I couldn't swallow properly about a year into my lyme diagnosis (that symptom comes and goes but is mostly gone) and the second after a miscarriage when I had nonstop migraines. But never had an EMG (that scares the heck out of me) but did have 2 MRIs that were fine.

Sara, thanks so much for your reply. It's interesting because I realize I forgot to mention that I started drinking cistus tea this fall, probably at least 4 cups a day. Do you think this may be breaking up biofilms too? I drank this in the past but not on a daily basis. I started drinking it in late August/early September and as I say have been drinking a pot of it a day since then. So your thoughts about the Rawl's protocol busting up biofilms or triggering bartonella makes me think it might be the cistus as the Rawl's I was doing only once a day and skipping days here and there.

I don't think I have mold but I should look into that. Is there a test for my house and myself?

Thanks again, your words are very comforting.

Kitkate said...
Thanks k07, appreciate your reply. I just got my b checked last week and it was 725 (B12) and the Folate, serum was >24.0. I had been supplementing with a B complex (started taking it when the pins and needles kicked in). Do you think I might have low b but it showed up as normal because of the supplementation?
Thank you!

Supplementing will show b12 as high when in reality you could not be absorbing. I did the same as you did - started supplementing immediately when numbness and vibrations started and my level showed high when tested. So I never gave it a second thought. Recently I had stopped supplementing regularly and when it was checked by my rheumatologist it was at 259. I eat a lot of foods that are high in b12 too. So not sure what’s going on but I know I feel better taking b12 daily.

What dosage of b12 are you taking? I’ve been taking 3,000 mcg sublingual w/b6.

k07, that's really interesting. I'm taking a bcomplex from Solgar. The b12 is 50mcg (cyanocobalamin). Sounds like you are taking a much higher dose. I only took it for about a week before I had the blood test and didn't notice anything different symptom wise. I should mention that I'm homozygous A1298 mthfr mutation so I can't process folic acid so have to take folate.

Another thought I had was I used to take phosphotydylcholine through my old LLMD. It was expensive so I couldn't keep paying for it but I wonder if that would help.

Do you have pots symptoms? Are you going to take my advice and see a neurologist?

I don’t have POTS. Is that a symptom?

I have to try to find one that’s lyme literate or at least open to chronic Lyme .

Kitkate said...
It's interesting because I realize I forgot to mention that I started drinking cistus tea this fall, probably at least 4 cups a day. Do you think this may be breaking up biofilms too? I drank this in the past but not on a daily basis. I started drinking it in late August/early September and as I say have been drinking a pot of it a day since then.

Uh, yeah, it's the Cistus tea. I just started this stuff and it is waking up all kinds of new symptoms for me. Bart causes tons of nerve sensations, including numbness. Seeing a neurologist is pointless, and if you have brain lesions they're just from Lyme and Bartonella anyway. Ask me how I know.

dcd, if I don’t have pots and only have the pins and needles in my left hand/arm is is it still considered sfn? And my vibrations are body wide and like I’m plugged into an electrical socket.

I have pots - ans dysfunction

Nerve pain upper left side

My right leg “ buzzes”

Now I’m concerned.

But my nerve pain isn’t everyday all day - does that eliminate it from sfn?