Introducing myself

*All symptoms come and go in the same day, everyday.

Hi my name is Rob and Im yet to be diagnosed. I was bit by a tick 35 years ago as a kid in CT, (46 yo) my brother took it off and we just laughed about t and thought nothing of it. Probably didnt even tell my parents. I grew up in the woods but dont ever remember another situation where I was bit again until May 1st this year. I was in San Luis Obisbo Ca in an area that had signs warning of ticks in the area. I felt something bite me on my leg, pulled up my pant leg and it was a tick. Not sure what kind but it came right off in my hand I remember thinking "that was easy" and also "it felt flat" and tossed it to the ground, rubbed the area with an alcohol swab and thought nothing of it. Afterall I was in California and there are no "bad" ticks out here. Stupid me.

Fast forward 2 weeks from that point I start having what I feel are prostatitus issues, mostly hard to pee, cant empty my bladder, a little burning, Had these before so I tell the doctor I have prostate issues in the past, he prescribes Bactrim. On the very 1st pill my leg starts getting really cramped and inflammed. Mostly my left calf. Kinda freaks me out but I take another pill before bed and the inflammation continues. I message my doctor next day he says keep on it so I take 2 more pills, 4 total over 2 days. Well that next day Im walking my dog and my legs go weak. Like they just became drunk instantaniously. I message my doc again and he says stop the meds so I do. I take prostate supplements and pound cranberry the next few days and my urinating is fine, but the leg thing just doesnt go away. Start having burning in my feet and toes. Well a week or so into it I go back to the doctor and tell him my legs are getting weaker, having trouble even walking some days. He says this isnt right go to the hospital. So I do on his recommend and they do bloodwork, take a CT scan and have a nueroogy team evaluate me. All is fine so they release me and say if it moves upward in your body come back.

Well maybe a few days later Im sleeping and I wake up to my arms both really numb. This is scaring me so the next day I go back to the hospital and tell them its moved upwards in my body. This is the moment I remember being bit by a tick early May. I tell the doctors but they dont seem concerned after learning it happened in CA and that the tick wasnt on me long. More bloodwork, comes back fine well then they do a MRI on my head, neck and eyes. No findings, everythings good they refer me to outpatient nuerology for a EMG test or whatever, havent had it yet. Theyre considering MS or something similar at this point. Another few days go by and my arms are getting worse. Im waking up to them darn near paralyzed cant make a fist and now Im really freaking out. My legs havent improved so I go back to the hospital (yeah they are fed up with me) and they decide maybe a lumbar puncture is a good idea. That provides no evidence of anything but I guess this rules out encephilitis and guillan barre. Bloods good, vitals good they send me home.

I call a friend on the east coast who had Lyme and start telling him my story. I learn a lot in this one phone call, about bad testing protocols, doctors that dont listen and how taking an antibiotic could trigger this thing out of its slumber. (a steroid injection triggered his) Well crap now bells are going off and Im thinking this is an absolute possibility. I have a memory from about 6 years ago I was on another antibiotic called Cephadroxil after a septum surgery and it too gave me nightmares, heart racing and woke me up in a paranoid state so I thought i was allergic and stopped it after a few days. More on the sleep thing later.

Next day I have the worst headache ever from the lumbar puncture my god it was unbearable. Fortunately it came on when I was heading to a Lyme doctor I found out here in Thousand Oaks, name of Miguel Gonzalez. He told me it was likely from the lumbar puncture and that I needed to lay down (which helped immediately) and that if it didnt subside then I would need to go back to the hospital and get a blood block or something like that. They take your blood and inject it into your back to promote clotting the spinal fluid. I spent 2 days in bed on my back and then it subsided on its own. Started having whats felt like burning nerve sensations mostly in hands and feet but its happened everywhere.

So the Lyme doctor takes blood and sends it off. Results arent back yet. Forgot to mention my general doctor took blood as well and those tests have now come back negative. ELISA test said .037 value and negative antibody. Bartonella test said <1.64 Bartonella henselae Ab IgG and Negative. IgM said <1:16 and negative.

Reminder if youve gotten this far that all symptoms come and go. But latest symptoms are the worst. Legs still weak. Burning thoughout my body. The numb arm thing has gotten way worse, borderline paralyzed last night after sleeping an hour and waking up with my arms just dead. Feels like a blood flow issue. I have a hum in my head, insomnia, anxiety, terrible nightmares and downright paranoia at night. I have this thing where Im trying to fall asleep, I get right to the point of hitting REM or whatever and my body just jerks awake and Im in full anxiety. Sometimes when I do get to sleep the same thing happens and I wake up terrified and dont know where I am for a second. My wife has been super supportive and doesnt wanna leave my side. Im being very open right now about some pretty dark stuff because Im hoping someone might of had something similar happen and found a solution because Im scared. My LLMD says that Melotonin can cause some bad dreams but this has happened on nights I wasnt taking it and its felt downright psychotic. Ive told my wife and friends because I needed the support which they have given me. Ive felt at times that I wasnt controlling my own mind for brief moments and its scaring the crap out of me. This happens only during sleep or while trying to sleep. Last night I slept ok and got some much needed rest.

Needless to say, Im stressed. I started Doxy on Saturday, but the sleep disorder stuff started a day or two before that so not sure whats triggered it. Ive cut out all gluten, sugar, Im not on drugs or alcohol and am eating healthier than Ive even eaten before for about 3 weeks straight now. Im considering finding an inpatient Lyme facility to try and start this thing out right with professional support. Im in California but may have to travel.

Thats my story. Thanks for reading.

Post Edited (Rider400) : 6/21/2021 8:25:43 PM (GMT-6)

Definitely sounds like Bartonella and Lyme, I used to get pretty severe numbness, including the waking up with totally numb arms. I was misdiagnosed with MS, and also had a lumbar puncture that I did not need (I wound up needing the blood patch too, that was hell).

As for psych issues -- yeah, Lyme and Bart can cause MAJOR anxiety and depression, depersonalization, I just read it can cause anorexia, and it can look just like Bipolar Disorder. Also "Bart rage" and Lyme rage is real.

Try taking magnesium every night before bed.

Edit: Melatonin made me feel crazy, I can't take it. It's anti-bacterial, but I'm not sure if that's why. I felt angry and like I was hallucinating on it.

Wow, Rider400,
so sorry to hear about this.

You’re not crazy. So many people have felt or still feel the same.

My least favorite symptom was the night panic. I would do the same, be falling asleep and then jerk awake. sometimes I woke up screaming because I was hallucinating demons in my room, or just like shapes, like a snake or mouse, or human just ... looming there.

I have Babesia which I was told is where most of my neurological symptoms come from.

Lyme and coinfections totally 110% cause neuro symptoms like you’re describing.

I had my worst neuro symptoms while living in a moldy environment (unknowingly). I had horrific anxiety, panic attacks and insomnia. I had constantly rotating symptoms, pain, numbness, twitching, talking to myself under my breath trying to keep myself sane in the middle of the night, my organs slowly began shutting down (kidneys, liver, spleen), terrible heart palpitations and POTS, randomly my legs gave out - for a long while there was no way it was safe for me to drive. My legs wouldn’t work to push the brake and then my brain on top of that thought green meant stop and red meant go. I got lost in places i’ve driven my whole life.

ive personally never had a problem with melatonin, but everyone is different. it didn’t help me sleep very much, but combined with a bunch of other things, it did. Valerian, Passionflower, CBD, magnesium, phosphatyldserine.

Please keep reaching out, there’s lots of people who have your back on here.

So grateful your wife is supportive.

wishing you healing

Yes!!! I did about 4-5 years of treatment. It was a rocky road, but after the first 2 years with one LLMD who was kill-happy, I got too toxic and the neuro symptoms were literally completely debilitating.

I didn’t have a dr for a while as I found one on this forum actually, right down the road from me! He is an “undercover” lyme doctor, for safety and legality reasons. But he knows what he’s doing. He has a team of insanely knowledgeable Lyme literate people... most of the doctors have or had lyme themselves.

Dr R does lymphatic drainage techniques along with red light therapy, stem cell patches, and FSM all in one sitting. That was my most successful treatment. I did it as often as I could afford.

Dr P is the main LLMD i’m speaking of. He works mostly with herbals, so it’s a slower treatment than pharmaceuticals. But my body is too sensitive for hard core abx, so I need herbs. I was blown away with how powerful his combo herb antimicrobials are. often I would herx on 1 drop. I was able to kill enough of the bugs off (with lots of breaks of NOT taking abx and just detoxing... that was a key for me!) that I was completely symptom free for over 2 years.

I am just starting to get some symptoms back but they are extremely mild compared to how I was and I think it’s due to postpartum hormones and mold exposure.

I definitely highly recommend detoxing, regularly and religiously. not necessarily tons of detoxing all at once.

pay attention to how the moon affects you. the full moon would literally have me in bed every month.

a website with amazing detox ideas is Tiredoflyme.com. Under his resources there is a whole section of just detox methods. pretty sure I tried all of them and just kept using what works for me. I still do some of them daily.

Below is what worked best for me, not necessarily what is mentioned on Tired of Lyme:

•Dry skin brushing
•hydrotherapy (cold/hot shower)
•no sugar, gluten, processed foods
•herbal teas all day like HerbanC and LymeAway
•alka seltzer Gold with a ginger capsule and fennel tincture - it’s really good iced. this rlly helps me bring the toxic load down
•homemade liposomal Vit C (super easy and cheaper than store bought)
•castor oil packs on liver
•detox baths not too hot, in baking soda, epsom salt, lemon juice
•cranial sacral therapy (lymphatic drainage)
•curcumin
•Renelix, Turskas, Apo-Hepat, Itires, Red Root - these helped me SO much. takes the toxic burden off liver, lymph, kidneys
•BurburPinella - good for neuro issues
•NAC
•Coffee or even just water enemas

Literally make healing your full time job. It takes so much time but I found out for me, when I was very ill, a part time job of treating didn’t cut it. sleep as much as possible, even if it’s in the day.

wishing you a faster recovery!

Post Edited (lymegirly) : 6/23/2021 10:58:55 AM (GMT-6)

Thanks all for your replies and the good information. I started taking Cymbalta to calm me down and it helped me get some sleep and mellow out the nightmares the first 2 mights. Havent taken it the last 2 nights and sleep has still been good. So maybe a part of that is behind me for now.

Im on day 6 of Doxy I think and feels like something is going on but this is all new for me. Drinking a ton of water taking probiotics and vitamins, foot baths and its been manageable. Doctor had me start drops of Stevia, Banderol and Samento. Started them yesterday woke up with an extremely dry mouth. I do think Im potentially herxing at times since I feel like hell part of the day but constant fluids seems to help. Also taking Alka Seltzer Gold when Im feeling my worse.

The issue of what feels like nerve pain, mostly in my hands and feet is really annoying, comes and goes.

Still waiting on latest blood test results. Doctor recommended another test in the meantime, its the DNA Connexions urine test. Anyone have an opinion on that?

Yes! So glad you have had some decent sleep!! That's an important part of being able to heal.

If the herxing increases, do be sure to add in more detoxing methods - there's a bunch of them you could still add in if needed.

orbitingaround,
what’s the difference between magnesium threonate and typical mag?

All my best healing wishes goes out to you Rider, this is a disease that can be defeated, although it is possible it will not be an easy ride...
Your post got me to recall the horrible headache I endured before getting the upper hand of it, they were chilling..

remember nothing is permanent, all things and phenomena will always turn brighter eventually..

Great to hear, may you keep on improving..!

Has the first headaches all gone now too...?

A clean diet and getting all viamins is important to finallt get well from this illness..

vitamins that has been most lacking for me is B, magnesium and zink...

Rider400 said...
Got some more results back today from MDL. My doctor states that IgG means that its something Ive had in the past, I guess meaning I have antibodies for but its not a current infection because of the negative IgM.

That sound correct? Here are results..

Mycoplasma:
IgM Negative
IgG pos (Index=2.24)

Epstein Barr
IgM VCA Neg
IgG VCA Pos (Index=1.97)
Negative IgG & IgM for EBNA & EA-D

Also WB shows:

Lyme:
IgM negative, but IgG bands 93/83, 41

Borrella microtl:
IgG p39 (weak) p41 (pos) p43 (weak)
IgM p62 (pos)

Borrella afzelll:
IgG p39 (weak) p41 (pos) p43 (weak)
IgM p62 (pos)

Borrella garinll:
IgG p41 (pos) P83 (weak)
IgM no bands present

Says low intensity detection of non species specific bands, not suggestive of infection

Im gonna do the DNA Connextions test just to get some more clarity on whats what.

I was not started on any ABX when I gave blood for this test.

Currently Im off Doxy 5 days. Still doing the no gluten, dairy, sugar thing but only symptoms at this point are still my weak legs, a bit of numbness in my arms and blurry vision, all which comes and goes throughout the day.

I found I have the MTFHR gene issue and am looking at a Thiamine and/or Folate deficiency, both of which show my symptoms can be a cause of. Started on a high dose Methylfolate and am continuing a high dose Benfotiamine as well as a standard B supplement.

IgG can also mean an older infection but an active infection. (Per my very experienced lyme doc)
So don’t let that stop you from getting treatment.
Bands 83/93 are Lyme “specific” meaning ONLY Lyme will cause those bands to show up.

You should seek out a LLMD for treatment

the issue with those tests as Girlie points out is that people with lyme have messed up immune systems these tests are all serological - meaning that they rely on the patients immune response - and studies have shown that 20% newer make any detectable anti-lyme antibodies at all.

also - all LLMDs know that in lyme patients - chronic infections can appear as IgG only or recurring and ongoing IgM responses - due to the special outer surface protein exchanging camouflage behaviour of the Lyme spirochete

so a spread of mild antibody responses including some IgG and IgM is not unusual in chronic lyme and i think it means you cannot rule it out based on serologic testing at all.

Got DNA Connexions test results back today saying negative across the board.

So ELISA negative

Lyme WB negative but
IgM negative
IgG positive bands 41, 83/93

Borella afzelil: IgG/IgM neg but..
Igm p62-low intensity detection
IgG p39 weak p41 pos p43 weak

Borella garinll: IgG/IgM neg but..
IgM no bands present
IgG Neg p41 pos p83 weak

DNA Connections negative for all

Not sure what to make of this. My symptoms have improved a lot since starting on these Methylated B vitamis. Turns out that Bactrim (the antibiotic that started this chain of events) is the one antibiotic I need to avoid because of this MTHFR gene disorder. It can further deplete/complicate Folate and/or Thiamine levels.

All my symptoms were in line with a severe Folate deficiency. All have improved since addressing that issue. Some have completely gone away. Its been about 2 weeks.

Going to continue treating with B vitamins, see a gene doctor and follow up with my Lyme doctor in a few weeks, see how I feel at that time.