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Posted 10/14/2018 6:08 PM (GMT 0)
Hi, I’m sorry, I didn’t have time to search all over the forum but browsed the start here post. I am hoping for a little info that might help me narrow down if it could be Lyme and where I should turn for help. I just don’t know what is wrong with me and I’m scared.

Completely boring medical history. Until.. I got ‘my first’ as far as I know, tick bite 3.5 weeks ago. Red welt formed and reddish rash but not a bulls eye, only the size of a quarter, formed on bite. On right butt cheek. Didn’t find the tick though. I am in southern NJ and we have had literally 100+ ticks on our poor dogs this summer in our fenced in, zero trees backyard! They were tiny at first but now they are larger. Don’t look like deer ticks.

So anyway, I could have been bitten earlier in the summer but didn’t notice? I’ve had about 30 mosquito bites this summer as well.

Symptom trail
Mid August, awoke with bad neck pain, up where neck meets base of skull. Seems to dissipate through the day, and is bad upon waking and overnight. Didn’t really think anything of it. Continues to this day. Not sure if related.

2 weeks ago tomorrow, awoke with following symptoms. Pulsatile tinnitus in left ear, felt slight numb sensation in right arm (mostly ring and pinky finger), right foot (mostly pinky toe side but feels odd to walk on), and Lower half of right side of face. Have a history of right Side numbness with migraine, thought it might be one, but never progressed to one. Have had some headaches all over head though. After 4 days of this sensation, went to regular dr. My bp and heartrate were high. Told her about tick bite. Was Told I have anxiety, was sent for bloodwork, X-ray of neck. Asked to return in two weeks. (Follow up this Wednesday)
Got routine bloodwork & Lyme two days later, at LabCorp, came back all levels in normal range. All Lyme negative except igm p23 ab present? Nurse called and said everything on bloodwork was fine, no Lyme, I only noticed the positive 23 when I viewed the results. X-ray also fine, probably muscle strain in neck.

Four days later (this past week) could not get heart rate down, panicky, bad headache, felt a lot of one sided loss of sensation, (I am not in pain or weak on that side though) so I went to ER. Dr thought stroke and ordered CT with and without contrast and extensively ‘routine’ bloodwork, everything is clear. ECG was unremarkable but pulse was elevated. Sent home and told to follow up with infectious disease and also neurologist.
Have had odd loss of sensation in right side every day since. Today left arm started feeling ‘odd.’
I don’t know where to turn, I follow up with my dr in three days, she can make referral for next appointment either ID or neurologist. She doesn’t seem to believe me.
Could the 23 show positive for one of those other diseases they say can make a false positive? Could the mono I had 16 years ago in high school be causing that positive? Or could Lyme really cause these symptoms so soon?

Please help me. I have a 1 year old son. I’ve never been so scared.
Posted 10/14/2018 6:30 PM (GMT 0)

Jcm2018 said...
Hi, I’m sorry, I didn’t have time to search all over the forum but browsed the start here post. I am hoping for a little info that might help me narrow down if it could be Lyme and where I should turn for help. I just don’t know what is wrong with me and I’m scared.

Completely boring medical history. Until.. I got ‘my first’ as far as I know, tick bite 3.5 weeks ago. Red welt formed and reddish rash but not a bulls eye, only the size of a quarter, formed on bite. On right butt cheek. Didn’t find the tick though. I am in southern NJ and we have had literally 100+ ticks on our poor dogs this summer in our fenced in, zero trees backyard! They were tiny at first but now they are larger. Don’t look like deer ticks.

So anyway, I could have been bitten earlier in the summer but didn’t notice? I’ve had about 30 mosquito bites this summer as well.

Symptom trail
Mid August, awoke with bad neck pain, up where neck meets base of skull. Seems to dissipate through the day, and is bad upon waking and overnight. Didn’t really think anything of it. Continues to this day. Not sure if related.

2 weeks ago tomorrow, awoke with following symptoms. Pulsatile tinnitus in left ear, felt slight numb sensation in right arm (mostly ring and pinky finger), right foot (mostly pinky toe side but feels odd to walk on), and Lower half of right side of face. Have a history of right Side numbness with migraine, thought it might be one, but never progressed to one. Have had some headaches all over head though. After 4 days of this sensation, went to regular dr. My bp and heartrate were high. Told her about tick bite. Was Told I have anxiety, was sent for bloodwork, X-ray of neck. Asked to return in two weeks. (Follow up this Wednesday)
Got routine bloodwork & Lyme two days later, at LabCorp, came back all levels in normal range. All Lyme negative except igm p23 ab present? Nurse called and said everything on bloodwork was fine, no Lyme, I only noticed the positive 23 when I viewed the results. X-ray also fine, probably muscle strain in neck.

Four days later (this past week) could not get heart rate down, panicky, bad headache, felt a lot of one sided loss of sensation, (I am not in pain or weak on that side though) so I went to ER. Dr thought stroke and ordered CT with and without contrast and extensively ‘routine’ bloodwork, everything is clear. ECG was unremarkable but pulse was elevated. Sent home and told to follow up with infectious disease and also neurologist.
Have had odd loss of sensation in right side every day since. Today left arm started feeling ‘odd.’
I don’t know where to turn, I follow up with my dr in three days, she can make referral for next appointment either ID or neurologist. She doesn’t seem to believe me.
Could the 23 show positive for one of those other diseases they say can make a false positive? Could the mono I had 16 years ago in high school be causing that positive? Or could Lyme really cause these symptoms so soon?

Please help me. I have a 1 year old son. I’ve never been so scared.

I suggest you find a LLMD for an evaluation and subsequent treatment.
your symptoms are consistent with Lyme disease symptoms.
I had pulsatile tinnitus in both ears (worse in one though), nerve issues in my left arm, and also a mild bels palsy on my left cheek area (slight numbness, tingly and pain)

Re: testing - Band 23 is lyme 'specific' - meaning only lyme will cause that band to show up.

So, you have symptoms, plus you have a test to back it up.

Yes the symptoms can come on this soon.

Re: referrals - Unless the ID and Neurologist Docs are lyme 'literate' - I'm afraid they won't be much help.

You need to see a LLMD.

You can start a new thread; "Looking for LLMD in/near_______" and fill in the blank with your location.

I know you're scared....it's understandable. Please don't hesitate to post here. This group is kind, supportive and very knowledgeable.
Posted 10/14/2018 7:18 PM (GMT 0)
Thank you! I want to cry.. I feel so relieved that it might not be ‘all in my head.’ If you look at me, you’d think I’m making it up if you didn’t know. Can I do anything right now that can help neurological symptoms while I wait for an appointment? (Herbs, vitamins, etc?) i breastfeed my very attached son and am semi ‘crunchy’ as a parent and feel sad that I might have to stop breastfeeding to treat whatever is wrong with me sad Could he get sick from me by Lyme or a coinfection?
Posted 10/14/2018 7:40 PM (GMT 0)

Jcm2018 said...
Thank you! I want to cry.. I feel so relieved that it might not be ‘all in my head.’ If you look at me, you’d think I’m making it up if you didn’t know. Can I do anything right now that can help neurological symptoms while I wait for an appointment? (Herbs, vitamins, etc?) i breastfeed my very attached son and am semi ‘crunchy’ as a parent and feel sad that I might have to stop breastfeeding to treat whatever is wrong with me sad Could he get sick from me by Lyme or a coinfection?

I know what you mean about people thinking you're making it up.

When lyme first hit me...I had just changed Doctors. She didn't know me at all...no history. So, she didn't know that prior to this, I was healthy, happy...seldom went to the Dr. In fact I don't think I had seen a Dr. for an entire year prior.
So, kudos for her not thinking I was a 'nut-case'. She believed me....thank goodness...because as silly as this sounds...I was wondering if I had some sort of somatoform disorder...seriously.

You should be detoxing..if you aren't already. The die-off of the bacteria produces endotoxins that flood our system...and cause symptoms to flare.
Detoxing will help flush those toxins out.

Some ideas/suggestions (start with a couple and add in one more every few days...don't start several all at once)

- Drink plenty of water
- Add some fresh lemon juice into some of the glasses of water. (Drink with a straw to help bypass the teeth. Then rinse your mouth out with clear water after...the acid can damage enamel)
- Take warm epsom salt baths (my favorite)
- dry brush your skin prior to bathing and showering
- do light exercise....stretching, light weights, walks, yoga...etc (as tolerated)
- Take Nutramedix Pinella and/or Burbur or Jernigan's Neuro Anti-tox II - CNS/PNS
- Take liver support supplement ie Milk thistle extract
- Take probiotics for gut health.

Here are some more ideas:

https://www.tiredoflyme.com/detox-methods.html

RE: your son. You may not be able to go on certain antibiotics while breast-feeding, as they could be in the breast milk.
Plus there are some indications that lyme can be passed on via breast milk. It's not certain though.
Posted 10/14/2018 8:52 PM (GMT 0)
Hi and welcome to our forum,

So very sorry that you are going through all of this and have symptoms of Lyme and co.

Many of us here have gone through what you are facing right now.

Your not alone anymore, we believe you and we do understand.

You can go to https://www.ilads.org/patient-care/provider-search

and also https://www.ilads.org/patient-care/provider-search to search for an llmd.

I would also go to ilads.org and printout their treatment guidelines and bring it to your MD on Wednesday and tell her you have symptoms of Lyme, had a tick bite, you live in an endemic area. Its important to start treatment right away. Ask if she could please start you on antibiotics so at least your treating while you find and llmd and schedule an appointment.

Just be aware most llmd's don't take insurance. Some will give you a super bill to submit to your insurer.
There are also grants available for treatment at Lymelight.com

There are very good books on treating with herbals "Healing Lyme" 2nd edition by Stephen Buhner
"Unlocking Lyme" by Dr William Rawls.
Dr Jerrnigan also has written books.

Please keep us updated and feel free to reach out and ask questions or just for support when needed.

I wish you the best of healing.
Posted 10/14/2018 9:20 PM (GMT 0)
JCM2018- If you were just infected a few weeks ago you are so lucky! Regardless of the lab work you want to start on doxycycline immediately. Go to an infectious disease doctor if nothing else. Many doctors still don't understand Lyme. If you put off getting treatment until you get a positive lab report from LabCorp you may risk getting sicker and having a harder time getting well. I don't trust any lab except Igenex and even they probably aren't 100% reliable but they are the best. Many more doctors accept that the lab tests are very unreliable and will automatically give you doxycycline for 21 days minimum just because you have had a tick bite or exposure. INSIST!
Posted 10/14/2018 9:31 PM (GMT 0)
JCM2018 - POSTscript - This would be a really good time to wean your son. You cannot be too careful with this disease. I've seen article saying that Lyme can be transmitted from one person to another through sex and through breast milk. I would not want to take a chance. I would have him tested as well.
Also can you tell us what state you live in? If you are in NY state or New England there are excellent Lyme specialists. Also California. Richard Horowitz is probably the best but he treats people with long term Lyme. But unless you live in a really small town, you should be able to find a primary care doctor to at least start you on doxycycline.
Posted 10/14/2018 10:38 PM (GMT 0)
I’m outside Philly in NJ
Posted 10/14/2018 10:57 PM (GMT 0)
Jcm, please find a llmd. My thoughts are with you. Keep us updated on symptoms/progress finding a doc.
Posted 10/14/2018 11:10 PM (GMT 0)
Is there any way I can avoid a false diagnosis? I’m worried it will present as something else neurological, can things like MS be ruled out in any way? (No lesions seen in CT of head and cervical spine but I know it isn’t as clear as MRI.) I am scared of Lyme but more scared of something less ‘treatable.’
Posted 10/14/2018 11:59 PM (GMT 0)
What got me was that I spent so much time going from doctor to doctor trying to get a diagnosis. They were ordering, CT scans brain MRI, eeg, brain mapping etc to figure out what was wrong with me, when a twenty five dollar course if antibiotics could have drastically altered the course of things. My history of gardening in Connecticut in June at a time when I was oblivious to ticks and lyme might have been a clue. If it were me, i would be really clear about exposure to ticks and the red rash on your backside. Ticks are active now. . I would find some way to get treated. Even if herbally until you get someone to sort this out.

To add some hope. I have a friend who woke up one morning with tremendous disequilibrium. Had so many neuro problems that he was rushed to ER for possible stroke. Somehow ER diagnosed lyme. He took antibiotics and is just fine. It happens.

Post Edited (AK) : 10/14/2018 6:10:45 PM (GMT-6)

Posted 10/15/2018 12:06 AM (GMT 0)
Two quick questions- is there’s any significance to the fact that 3.5 weeks later there’s is still a ‘mark’ where I was bitten? Not a rash, but you can still clearly see the spot I was bitten even though it was just a pinprick back when it was a swollen welt. not sure if that can be associated with tick carried diseases.
Also, is there any relation between being bitten on the right side and having numbness sensations on the right side?

Last, is there anything I can say to a skeptical doctor? , is there any harm in doing the abx without her (dr) clearly believing symptoms are lyme based, in risk/benefit weighing, and how can I get her on board? Before going to ER, dr wanted me to see neurologist as next step. I’m worried she will want to wait til I see the neurologist to do any treatment and that could take a few weeks to see one approved by my insurance. I don’t know what the best treatment window is but we are coming up on 4 weeks since confirmed bite. I don’t want to waste time if I can help it!
Posted 10/15/2018 12:42 AM (GMT 0)
Ask for another test, they are notoriously unreliable inside of a month because the body needs time to begin producing antibodies.
Posted 10/15/2018 12:51 AM (GMT 0)
Astragulus is another good herb to take, but I'm not sure if it's bad to take it when breastfeeding.
Posted 10/15/2018 1:10 AM (GMT 0)

Jcm2018 said...
Is there any way I can avoid a false diagnosis? I’m worried it will present as something else neurological, can things like MS be ruled out in any way? (No lesions seen in CT of head and cervical spine but I know it isn’t as clear as MRI.) I am scared of Lyme but more scared of something less ‘treatable.’


MS is ruled out if your symptoms aren't consistent with MS plus no lesions on brain/spine.

You can just stay away from the specialists that will give you alternative diagnoses....and go to a LLMD first ...and see what he/she says. If they're not sure...they may suggest you go to a neuro - BUT, even if you do have MS symptoms...they can still be caused by Lyme disease.
Sometimes people are diagnosed with ALS...and they have lyme disease - that caused those symptoms.

Have you heard of Dr. Martz? He was diagnosed with ALS...and then got a Lyme diagnosis and treated - that was several years ago...and he went into remission.

Here's the video if you want to see it:

https://www.youtube.com/watch?v=uy9fduldv6m
Posted 10/15/2018 1:32 AM (GMT 0)
Thank you all for the info! I will try to process everything and look it all over tomorrow. I have one last question- would it be unusual or consistent with Lyme for my symptoms which are mainly, loss of sensation, to kind of wax and wane in intensity throughout a day? Last night when I went to bed, I could have sworn I was 75% back to normal. Today, it spiked and I felt 75% ‘weird’ again. It has been that way off and on since beginning. One day, my right knee (most affected side) felt SO tingly and restless out of the blue, like RLS I imagine, making it hard to sleep, then it resolved the next day. Right hand pinky and ring finger ‘fatigue’ and loss of sensation has been consistently there. Left arm feels about 50% better than earlier but still feels odd in fingers/hand.

I’m sorry, I know many of you have been dealing with these and worse symptoms for far too long. The shock of these scary Neurological symptoms is still very much in effect for me. I’m scared that I’m ‘getting my hopes up’ that I’m on to something that it may be Lyme. Not knowing what is wrong is really frightening. Thank you for all of your suggestions and support.
Posted 10/15/2018 1:47 AM (GMT 0)

Jcm2018 said...
Thank you all for the info! I will try to process everything and look it all over tomorrow. I have one last question- would it be unusual or consistent with Lyme for my symptoms which are mainly, loss of sensation, to kind of wax and wane in intensity throughout a day? Last night when I went to bed, I could have sworn I was 75% back to normal. Today, it spiked and I felt 75% ‘weird’ again. It has been that way off and on since beginning. One day, my right knee (most affected side) felt SO tingly and restless out of the blue, like RLS I imagine, making it hard to sleep, then it resolved the next day. Right hand pinky and ring finger ‘fatigue’ and loss of sensation has been consistently there. Left arm feels about 50% better than earlier but still feels odd in fingers/hand.

I’m sorry, I know many of you have been dealing with these and worse symptoms for far too long. The shock of these scary Neurological symptoms is still very much in effect for me. I’m scared that I’m ‘getting my hopes up’ that I’m on to something that it may be Lyme. Not knowing what is wrong is really frightening. Thank you for all of your suggestions and support.

My symptoms have always waxed and waned throughout the day...and some days are better than others.
Typical of lyme and coinfections - things show up...and then they go...and darn - they're back again.
...but then some symptoms can be there all the time.
Posted 10/15/2018 2:03 AM (GMT 0)
Jcm, please find a llmd. My thoughts are with you. Keep us updated on symptoms/progress finding a doc.
Posted 10/15/2018 2:03 AM (GMT 0)
I wanted to answer your question about the bite - it is not uncommon for the tick bite mark to continue to show up and last for months, even after the swelling and the rash go away. I was bit in July. My rash took about a month to fully go away, but the bite mark itself would get red, swell, seemingly get better, just to swell again. After 2.5 months I went to the dermatologist who said it had formed into a granuloma. I had to receive a steroid shot. It’s been about a month since then, the redness and swelling is gone but I can still see a mark where the bug bite was. The dermatologist said it likely scarred and may never go away. He could laser it away, but it would be for aesthetics only.
Posted 10/15/2018 9:45 AM (GMT 0)
Jcm2018, I feel for you, and yes it sounds like Lyme. I go through the same wax and wane of symptoms too, the restless leg syndrome may not must be a feeling, but part of the MSIDS/Lyme Complex. I hope you can catch it early with ABX, Doxycycline and other abx and maybe you can find a LLMD. I have more the later stage and it is no fun, get those same symptoms on and off, and hard to predict when. Wishing you well for you and your son's sake, and would caution as others here have said about breastfeeding, Lyme does get passed through partners, kids and families one way or another. I'm sad now, and your being scared, it is understandable.
Posted 10/15/2018 8:50 PM (GMT 0)
Another question for anyone still there!
I called my dr to ask about possibly retesting lyme because I’m concerned about one positive band (anyone knows if false positive is common for specific band like 23?) and she said a positive igm band could in theory indicate a new infection, so there was no way a less than a month old lyme infection would cause neurological symptoms. Does that sound generally accurate? Should I find a new pcp who doesn’t dismiss everything? Guessing she won’t want to do Abx. Said we can discuss next steps in person.
Posted 10/15/2018 9:12 PM (GMT 0)
I had some of the exact same symptoms you are describing, when I first got Lyme. My first symptoms were neck pain, emotional unstability/anxiety, fever, and numbness and paralysis in the right side of my face.
Posted 10/15/2018 9:17 PM (GMT 0)
Was that experienced soon after being bitten? I think the lack of fever is even throwing me off a bit.
Thank you
Posted 10/15/2018 9:20 PM (GMT 0)

Jcm2018 said...

I called my dr to ask about possibly retesting lyme because I’m concerned about one positive band (anyone knows if false positive is common for specific band like 23?) and she said . . . . there was no way a less than a month old lyme infection would cause neurological symptoms. Does that sound generally accurate? Should I find a new pcp who doesn’t dismiss everything?

Wow!!!! What an idiot!!! Is that what doctors believe? How long do they think you have to have Lyme before neurological symptoms can occur??? Seriously?!

I never cease to be amazed, astounded, infuriated, enraged, (fill in the blank) at the incredibly ignorant, blatantly false, and infinitely damaging statements that doctors make to people with Lyme. If the doctors actually believe what they say, even more astounding. The truth is out there (and here on this forum) for people who have the discernment and courage to believe it and act on it.

Sorry for the rant.

My first symptoms were ALL neurological, and I had a host of them.

Don't bother discussing this further with that doctor. Get straight to an LLMD. You can start Buhner's herbal protocols on your own while waiting. I am so sorry. Please come back to post whatever questions you have. We're here to help.
Posted 10/15/2018 9:25 PM (GMT 0)
I have state Medicaid insurance and am trying to find an llmd currently. Need to save some money first sad
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