I really don't know what to do. I've been tested for everything you could imagine and then some, had several tests come up positive each Dr said those tests were false positives. One for VGKC antibodies. One for low copper (just retested and still low 8 months later). A couple others I don't recall exactly, but they ignored all of that and then my new neuro said have you ever been tested for Lyme? So Lyme screening was positive, Immunoblot was positive for IGM but negative for IGG. Neuro diagnosed me with Lyme Disease and referred me to Infectious Disease for treatment. Went to ID and she walked in the door and said I can't stand Lyme all the symptoms it's just a frustrating diagnosis and I can't stand it. Proceeded to sit down and tell me that she believed both of my positive Lyme tests were false positive because even though I have literally almost every single symptom involved in Lyme to have these symptoms I must have late stage Lyme and in that case I would be positive for IGG not IGM and that she wanted to do a lumbar something basically a spinal tap and more labs to confirm a Lyme diagnosis and that would take another 5 months and if she doesn't get a result she believes confirms it I still won't get treatment. We (my mom and I) asked what result she needed to get to confirm and get treatment and she refused to answer and responded with every single Lyme patient that has been referred to me is the same they did not actually have Lyme and I don't believe you do either. I'm wasting away to nothing. I have peripheral neuropathy, autonomic neuropathy, tremors, I have to use a walker or cane,I've had a right bundle branch block, palpitations, panic attacks, typing is getting difficult, I can't remember words, I forget what I'm doing or what someone just said to me, I'm don't know what to do. I've seen every kind of Dr in the 15 months, 2 Primaries, 2 Neuros, 1 Neurosurgeon, 1 Oncologist, 1 GI, 1 Pain Management, 2 Physical Th3erapy, 1 Psychiatrist, 1 Therapist. I have been everyone's ugh I know this isn't right ginnie pig for the last 15 months and I finally finally got a diagnosis from the neuro of Lyme and not the only Dr in network says she doesn't believe it an she wants to start a full workup. and waste another 6 weeks or more. I'm afraid of what I will be like in 2 more weeks. The damage is so fast. I'm 38, fit, single mom of two and I'm terrified I'm going to die before I ever get a treatment. I spent hours on the phone googling and calling and the only drs will to treat don't take insurance and I don't have 2-3 grand laying around, or will take another month or more just to establish care with all new drs and get them to review my records and agree to treat. I'm just scared. So scared, and I don't know what to do. Any help would be appreciated. Bless you

Do not get a lumbar puncture for any circumstances you described nothing good will come of it! The last response summed it up but just wanted to emphasize a point.

saraeli, girlie, skinny_joe, first off thank you. I cried myself to sleep yesterday twice. I just got your message and it brings me some peace to know there are others out there just like me, but it also makes me really sad. I know nothing about Lyme other than what I have learned doing google searches over the last week. While I have learned a lot, I still feel clueless. The neurologist that diagnosed me was the director of neurology for a very big conglomerate medical group, he's a highly respected Dr in the wealthiest of medical centers. From what I have learned this week, he took a huge risk to give me an accurate diagnosis, that being said I have noticed that Lyme disease has not yet been added to my official list of conditions on my online chart. That was my first clue something was weird. I have so many more symptoms than I listed in my first message.

I was so desperate and heart broken when I wrote this message yesterday. Today I feel a little numb. I spent what time I was awake yesterday looking and searching for any doctor in the area that any kind of experience in treating Lyme disease and unfortunately living in Texas Lyme disease is almost unheard of here. I lived in NY for 2 years 2016-2018, I suspect I either contracted it there, since I had a huge wooded back yard, and deer were in my backyard every day. The other possibility which I think is more likely is that I've had it since I was 16, When I was 15 I caught mono kissing a boy that had "recovered" from mono. Almost a year to the day I came down with an even more debilitating fatigue. I was sleeping for more than 24 hour periods without waking to use the restroom or having an accident. The big event I slept for 3 days without waking. My mom thought I had slipped into a coma and she had a neighbor help her carry me to the car and drove me a children's hospital in Austin. I stayed there for almost 3 weeks and they diagnosed me with Chronic Fatigue Syndrome.

I had a ton of other symptoms besides sleeping beauty, I had horrible back pain, that otc nsaids did not affect at all. I was eating ridiculous amounts of food day and night and losing weight. I was 5' 4" and weighed 86 lbs. I had blackouts and episodes of cold sweats, the sensation I was going to black out and having to lay on the floor to relieve it. I vomited randomly without the sensation of nausea proceeding it. The children's hospital put me on a high protein diet supplementing with ensure and sent me home. I never received any medical care for this once released. I had insurance many times in my life but when I would tell a Dr I had CFS it was like telling them I like pickles. No one ever asked me what symptoms I was dealing with or if I was having any issues with it, or if I would like to try any treatment to help with it. It was just ignored entirely even if I spoke of symptoms related to my CFS.

Fast forward it's been 22 years since that diagnosis. I have been pregnant 8 times, I have 2 living children, 1 stillbirth, 1 miscarriage at 15 weeks, and 4 early miscarriages. My 2 living children were both premature. I had PPROM at 28 weeks with my oldest, developed a serious uterine infection while receiving iv antibiotics and delivered at 32 weeks 1 day. My youngest I went into labor at 32 weeks 1 day, was given medication to stop my labor at 2cms, and was delivered at 36 weeks. My daughter that was stillborn I went into labor 32 weeks 1 day the hospital tried to stop it and her heart stopped. I delivered with forced delivery due to meds given at 32 weeks 3 days.

I have had anaphylaxis after delivery, In November 2019 I had a right bundle branch block and my bp dropped dangerously low. An ambulance had to be called. I had episodes of my bp plummeting repeatedly over the next 8 hours. They blamed it on a new medication however I continued to take that medication dr's orders for several months and never experienced again. The sensation I experienced was very similar to the near blackouts I had as a teenager from the CFS. Cold profuse sweat, feeling of doom, need to drop to the floor. The anaphylaxis they blamed on a pain medication I took previous to that day with no issues and after that day with no issues. I was exposed to Latex during delivery however so very possible since I do have a known allergy to latex. I have a ridiculous medical background. I developed Steven Johnson Syndrome from CChlor at age 8, and anaphylaxis at 3 months while hospitalized with pneumonia from IV penicillin unsure of the type. I also have been told never to take sulfa drugs again because I get horrible hives from it almost immediately on contact orally or on my skin.

Shortly before leaving NY I came down with a horrible flu or bronchitis, they were unsure what it was but it was nasty. High fever, major respiratory issues, body aches pains, profuse sweating when I slept night or day. It took almost a month to recover with breathing treatments and oral antibiotics. In the 2 years I was in NY I took oral erythromycin for 9 months consecutively due to a massive infection in my jaw that resulted in having all of my upper teeth pulled. My lower teeth are now permanently wired together with a wire that is behind my teeth and I have upper denture, that I had hoped to have mini implants but that hasn't happened. I went to NY to a battered women's shelter with my boys, the jaw infection was from having a fractured jaw without treatment. had a partial upper jaw reconstruction.

So between leaving NY and my first year back in TX things were better but still weird. I have gotten colitis 3 times always "infectious" of unknown origin. I got a bout shortly after arriving back in tx that cost me my job. I was exhausted all the time. Major body aches, and started "falling" at this time. Got the job I have now Jan 2019. Came down with serious "colds" and "viruses" between then and May 2019 when I got the last bad one. Shortly after my last miscarriage at 9 weeks. During my short pregnancy I began having insane panic attacks, palpitations, heart arrhythmias, ataxia and near ataxia, It took 3 weeks to "lose" the baby from when it's heart stopped. Almost as soon as I "lost" the baby I developed a virus/flu. Immediately after the virus flu I had the RBBB.

Now I have a massive list of symptoms including serious visual disturbances, severe muscle weakness in my legs, my right leg doesn't work well at all, my EMG showed Peroneal nerve damage on the right side. My left foot started going numb about a month ago. I have horrible balance. I fall all the time. Several times a day. I have had 4 bad falls in the last 12 months with injury. I get visual migraines that start with a spot in the middle that disappears with a prism or rainbow around the edges, that spot will grow until my entire front line of vision is gone. Then the pain comes and it is unbearable. I've had to go to the ER a few times. The food I eat comes out undigested frequently. I have hearing disturbances. I hear a high pitched squeel and then the hearing in that ear becomes distorted as if I am hearing through water or cotton. Sometimes it happens in both ears. The joint, muscle, and nerve pain are unreal. I do have bulging discs in my neck that have pinched my nerves and squished my spinal cord so I recently had a cervical epidural and was placed on gabapentin in order to avoid surgery. I also have minor arthritis and spondylosis in my lower back. I get bizarre sensations on my skin in various places. Sometimes it feels like something burning hot just touched me, or I will get a random stabbing pain like someone just shoved an ice pick in me. The leg that is now almost paralyzed from the knee down with foot drop and neuropathy is also beginning to have a skin discoloration on the ankle and outside of my foot with a change in skin texture that no Dr can identify. Primary said oh you just need lotion.....except the bone underneath hurts to the touch.

I know you are not a Dr, I just would like to know if any of this sounds like those that have been confirmed and treated with Lyme or not treated. Am I right in believing the neuro and the screening test and confirmatory test? I have tried CBD in the past for migraines it was very effective. I have never taken it on a regular basis as it is too expensive every place I've seen it. I'd love to know of any affordable places, and or I know nothing about cbd so is there a dosage or type that work better than others for Lyme? I have not tried Curcumin, other than as a seasoning in foods. I've tried Turmeric, Apple Cider Vinegar. lemon, and cayenne shooters in the morning and they were helpful short term, long term did a number on my stomach and stopped being effective.
Here are my current prescriptions:
300mg Gabapentin 2 pills for breakfast, 1 for lunch, 1 for dinner, working up to 2 pills 3 times a day. Severe nerve pain.
10 mg Buspirone 2 times a day for panic attacks
10mg fluoxetine (prozac) once a day (because they insist I am depressed)
10 mg cyclobenzaprine for muscle pain in neck and between shoulder blades
Albuterol Inhaler as needed (rarely, somewhat seasonally) Asthma since birth, allergy and exercise induced as well as emotionally induced? If I get really upset about something I sometimes have an instant asthma attack.
Immune compromised for possibly 7 weeks due to cervical epidural with steroid injection.Dexamethasone
Recently removed:
5/325 hydrocodone - prescribed for 1 week due to bad fall, only took like 3 pills because it made me really sick to my stomach

Thank you Skinny_Joe and Saraeli,and Girlie it's really nice to know someone out there like me.

do not go back to id doc ! i saw 33 doc in 6 months "false positives " and refusing to treat the root of the problem.even dr neil spector lost a heart . its called multiple systemic infectious disease sydrome by horowitz.
if u have some money i would drop the meds and pick up holy basil for anxiety, st jons and mucuna bean extract for depression -white willow and kratom for pain and look into other herbal or self healing modalities. buhner rife bvt just to name a few ... check out the ellie lobel story . some members here were in the same kinda shape or worse are now living full healthy lives . you're in the right place asking the right questions at the right time .

WOW bluelyme so it is possible that I can still reverse some of this? Everything I have read online has said nerve damage is almost always permanent and I have nerve damage in every direction. Skin, Organs, and Muscles. I have used Kratom for pain in the past and it was very beneficial. So since a lot of people on here are saying get away from pharma and go herbal. I have wanted to do this however at the moment I am walking a fine line with my employer, when I am forced to return to work, I am no longer capable of doing my job. I really need to be placed on disability, my mom is currently trying to help me with this, but being employed already makes that difficult so I have to walk a tight rope and part of that is abiding by all Dr recommendations of treatments. I am afraid if I stop taking my meds and start using herbal remedies that will interfere with any chance of getting on disability. I am a single mom, if my employer stops providing admin pay and I am unable to do the work I was doing, I will have no income. My kids come first above anything. So I feel at a loss on what to do. I have reached out to the Neuro that diagnosed me, they responded they are waiting for the ID Dr. to upload her notes on the visit and will be in touch after. She failed to upload the notes by end of day Friday so hopefully she will do it Monday but I don't know.

My gosh, you're a survivor, I'm so sorry you've been through all that.

DO NOT go back to the Infectious Disease doctor. DO NOT have a spinal tap/lumbar puncture (I had one).

Yes you have Lyme. You need a good LLMD. Listen to everyone here. You're very lucky that neurologist told you you have Lyme -- I was misdiagnosed with Multiple Sclerosis and saw 4 neurologists. I've had plenty of numbness and neuro symptoms for years, and after a year of Lyme treatment my numbness is gone.

This is a popular book Healing Lyme it talks about protocol Buhner wrote up . Most library systems have it and you can request it.

https://www.amazon.com/Healing-Lyme-Borreliosis-Coinfections-Rickettsiosis/dp/0970869649/ref=sr_1_2?crid=7XWYPZ75DHPP&dchild=1&keywords=buhner+protocol&qid=1592164295&sprefix=buhners+%2Caps%2C181&sr=8-2

You might ask if the neurologist is willing to treat you at least for a period of time. All he can do is say no.