Hello guys. I joined here back in 2019 when I had a mystery of multiple medical issues arise. I started having strange heart palpitations. These cardiac episodes would cause my whole body to lock up legs included and I would be vibrating and jerking uncontrollably.
My vision started to go. Extreme sensitivity to light and eye floaters. I went to many eye doctors for this and no one could even spot a lick of a problem. I lost a ton of weight and begun to have really strange symptoms. The most alarming were the full body muscle twitching. It remains mainly in the soles of my feet but I do feel them absolutely everywhere even my tongue. I did treatment with Dr C and Ali Dr S in upstate ny and both really didn’t help me. DR.c didn’t want to tell me anything to much because with feel like he was under the gun on the state and and dr S might even be a little more snake oil then I had first understood. I did intensive IV antibiotics therapy for about a year. Not much subsided but I did feel a calming of the symptoms
. I chose to stop antibiotic treatment because that was also destroying my health as a young man. I went on Antabuse for a while and everything kid is plateaued. It’s been just about 2 years ish since treatment and I am really feeling like ****. I am noticing muscle wasting on my left tricep that was also pointed out to me by a masseuse. This is by far the most alarming because it brings up all my old suspicions of ALS. I feared for this during my initial disease and took action to get testers and nothing significant came up from my ecg or whatever they call that torture.
Now..
I am feeling awful worried about als and seeing an ID doctors who I think is going to make me more upset then anything. Dr S really wanted to push a ton of expensive supps as well as the antibiotics. Dr C had 0 bed side manor and never really told me what was going on. I had a ton of inconclusive blood work and it’s really just making me so desperate. I can’t do this with all the doctors and people telling me to do nothing, be apply extreme antibiotic, rife machine, hyperbaric Chamber.. it’s all just so much to do again when it’s initially got me no where. The constant fear of ALS is really driving my mind off the deep end. I wish the twitching hyper reflexes and muscle wasting would just stop and I would get a posting lyme test.
IgeneX band 41 reactive.
Babesia negative
Bartonella resactive but with some sketchy test place
Where do I go? What do I do ??
[ 07-16-2022, 12:50 PM: Message edited by: buckypas ]
Posted by hopingandpraying (Member # 9256) on :
So sorry you are going through this. PM sent for NY & CT.
You should contact the NY Lyme Support Groups - they would know better about NY and might be able to help you.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper tab, make your changes, then click "Edit Post". Thanks.
Posted by hiker53 (Member # 6046) on :
buckypas—ALS doesn’t affect eyesight, so, perhaps your worries about als can decrease a bit.
Blessings.
Posted by Lymetoo (Member # 743) on :
Neurologist?
They should be able to pinpoint if it's ALS.
God bless you as you work this out.
Posted by buckypas (Member # 51996) on :
went to one 2 years ago at columbia presb. they told I do not have als .... everyone says that is enough for it to not be als .. I am really nervous and the other symptoms I have dont really point to als
Posted by Bartenderbonnie (Member # 49177) on :
Here’s Kris Kristofferson, who was left with months to live with his WRONG ALS diagnosis.
I know it is expensive to start over. But where else does the medical system offer a 3 hour initial full body exam along with the expertise of the proper tests to order?
If it isn’t Lyme and company, they can offer clues as to what’s going on in your body’s organs.
Posted by bluelyme (Member # 47170) on :
yeah the muscle wasting is scary stuff but its a combo of a few major systems going haywire. for relief of the twitching one must get an adequate amount of magnesium , topically with letting magnesium oil dry on skin then follow with a long epsoms salts bath and even supplement with a few non bowel types of mag pills. that'll offer temporary relief unless you wanna spring for iv magnesium injected helped the heart spasms for me immediately.
they discovered bartonellas effects on wasting associated with HIV in the 80s...if you target bart and mycoplasma it seems to halt the nerve destruction to the mylien sheith . it important to treat hard enough to get the pathogens out but not so hard to create more damage with the lps and toxic dieoff with killing borrelia and bartonella.
if you need to visually verify infections , before you do adequate treatment or check progress one can do it with a simple brightfield microscope and a few veterinarian giemsa stains (see microscope thread here)
please read the dave martz story or neil spector story to see how they even treat doctors with same symptoms...
if you cant or wont afford zhangs full bartonella protocol,with circulation p , then seek 9 months plus of rifampin/zithromax combo assuming your liver and adrenals can handle treatment... fwiw after treatment nerves can repair but slow if at all ...you must stop the damage be careful with lactic acid and overexertion as well...keep us posted