Occipital neuralgia from Lyme disease?

Mustard Seed said...


Just having your doctor tell you the western blot was negative isn't enough. It's likely they're going by CDC criteria for Lyme, which is complete non-sense.

For instance, you could have positive bands at 31, 34, 39, and 41, and the Western Blot would read negative by CDC guidelines. Your doctor tells you it's negative, and you move on with you life..

That would be CDC positive if those are IgM

Mustard Seed said...

Girlie said...

Mustard Seed said...


Just having your doctor tell you the western blot was negative isn't enough. It's likely they're going by CDC criteria for Lyme, which is complete non-sense.

For instance, you could have positive bands at 31, 34, 39, and 41, and the Western Blot would read negative by CDC guidelines. Your doctor tells you it's negative, and you move on with you life..

That would be CDC positive if those are IgM

Ah very true. Not so if IGG though.

Right - For CDC it requires 5 bands for IgG....right?

Mustard Seed said...
Ya, and 34 isn't one of them weirdly enough.

but it is for IgM (34) - That really doesn't make sense, does it?

Who's deciding this...anyway...morons?

Mustard Seed said...
No, 34 isn't in any CDC criteria. They omitted it because it may be present in people who were vaccinated for Lyme.

It is very Lyme specific however.

But yes, they are morons :p

Oh,yes, you're right not CDC .

Hi, ChristopherMR - welcome to our community!


Sometimes even my LLND - when talking about my nerve vibrations and shivers...mentions 'anxiety'.
He doesn't get it. I do not have the anxiety...these are physical symptoms from my nerves being on overdrive...or something..
Definitely not anxiety for me.

Yup, a dozen tick bites - chances are you have lyme disease! Especially with those symptoms...good for you continuing to search for the 'real' reason.

Let us know what your Igenex results show, okay?

..We encourage all new members to read through the thread: "New to Lyme?..Start Here!" it's packed full of useful information.

If you need help finding a LLMD - we can help with that, too. (or do you already have one...or still seeking?)

Just start a new thread:"Looking for LLMD in/near_____" and fill in the blank.

You can also email me and I will send you names from my list.

Okay - and please keep reading, feel free to ask any questions you have.

Christopher
Welcome to our community. This board is so helpful.

I feel your pain as we all do.

I live on long island also. I went to a LLMD in bridgport ct. You can take the ferry from port jefferson if you would like and then take a cab to his office.

If you are interested in his name you can e-mail me. I as well would like to get info on who you are using in New Jersey.

I thought the llmd in bridgport was pretty good but I might want to try somebody else also. If you e-mail me I can go into a little bit more detail.

Take care and have patience!!

Howdy y'all!

Coming back to this thread to report that I was diagnosed with Lyme disease and Bartonella yesterday! Igenex test came back double positive for band 41 and positive for one other band (can't remember which ATM and I forgot to grab a copy 😝). Bartonella diagnosis was based on symptoms and we are waiting on tests to return for confirmation. Definitely hang in there Traci! Once that first LLMD sees you it all gets better

Well, that's great, Christopher! Congratulations! Now you can get started on healing and feeling better!!

Do start all treatments at low doses (no matter what you use), and do start detoxing. We are here to help you learn how to get through it all!

Hello! This is my first time posting on this sight, so I apologize if it's a long post! I was diagnosed with Lyme disease a year ago after a year and a half of doing to numerous doctors week after week, with no clue what was wrong with me! Before my diagnosis I had an Atlas adjustment (since I was exploring every option) and I believe the chiropractor injured my occipital nerve. I had the worst headaches and neck pain daily for 3 months and nothing could touch it! The only thing that finally helped a little bit was a good Physical Therapist. Finally I got my Lyme diagnosis and started treatment in September of 2016. So I've been on antibiotics for 7 months and I was thinking I was making progress, but not sure any more! I more recently got diagnosed with Babesia and we've tried herbal treatment for that but every time I start it I have all sorts of problems! I finally was able to do 2 herbal treatments: Crypto plus and Bab 1 and I'm up to 10 drops 2x day (supposed to work my way up to 40 3x). A few weeks ago I went on a trip with my family and felt just great! When we got back I decided to up my drops to 14 of each. That evening I didn't feel too good and started going down hill from there! I've been detoxing like crazy thinking maybe it's a herx, but it just won't get better, in fact might be getting worse! My head pain is back with this horrific intensity, I am dizzy, shaky, weak, fatigued and panicky. My head feels like it could explode again and I've been somewhat free of these headaches for many months (except for the occasional one which doesn't last too long). I honestly feel like the past two weeks that I am slowly dying! I've never felt so horrible and it's making me terribly depressed! I tried Baclofen the other night, it's a muscle relaxer, and it seemed to increase the pain and panic. I am terrified of trying anything else since i'm so scared of the side effects. I have a prescription for amitryptiline but again too scared to try it! I feel so terrified and so alone! It's so hard to know if this is from Lyme or Babesia or if there is something else that is going on with me. I've also been so close to going to the ER but know they won't be able to do much for me. I have 3 children that need there mom, and I just don't know what to do! Please, please if any of you have any input I would love to hear from you.

Hi Tonyaraven,
Welcome to our community! I'm so glad you found us.

Julymorning has given you some good information. I would encourage you to not completely stop your treatments thought, but go back to below 10 drops twice a day for a while instead. You said that you were doing well at 10 drops twice a day, so we can assume that your body was likely handling the die off better. So, by going to just below that level should allow your body to detox easier.

Do be sure that you are doing all you can to help your body detox. We can go over what you are doing for detoxing and possibly help you some. Just let us know. We do have some good detoxing suggestions in the "New to Lyme" thread, and here is another good list of suggestions: www.tiredoflyme.com/detox-methods

Hi All, I'm new here and trying to gain knowledge like you all. 39 years old, diagnoses are at the bottom but here's some info about ON and I have some questions regarding Lyme.

In 2011 , I was diagnosed with Occipital Neuralgia after having pain in the back of my head that started with migraines originally in the front of my head and wrapped around. Over the course of 6 months the pain in the back of my head went from head pain off and on everyday for different periods of time to steady pain constantly with no relief 24/7 for 2 years and I ended up with no quality of life. The pain in my head felt like I was getting beat with a hammer repeated over and over again and at the same time getting zapped or shocked repeatedly out of the blue over and over again every few minutes, or seconds. I tried every procedure, every medication there was like a guinue pig to help relieve the pain, except pain medication which does not relieve nerve pain. I was on 23 pills a day, which included as needed medication, with a total of 9 different pills. Finally after doing my own research and getting the strength to get up and live again through my children helping me pull through the darkness.....

I was able to get family and friends to setup fundraisers and flea-markets to help raise money so I can be flow across the country to get a surgery done by the top surgeon that helped invent the procedure to heal the occipital Neuralgia so I can be pain free or at least close to it. Not only was the surgery 100% successful and I'm still pain free today, but I am one of the very few patients that are 100% completely successful with this procedure! The success rate is 86% overall or so, it varies depending on what criteria you look at; overall, by doctor, by state....

Well that concludes the part of Occupital Neuralgia for now, but I have been battling Lyme Disease symptoms for the past few years and I have received several different diagnoses relating to stomach virus or stomach issues. I also have been battling a rash that looks like flea/tick bites off and on that comes and goes, it appears more often in the spring and summer than the other seasons but never goes away. The rash is actually bites scattered on my upper body hat look like tiny red bumps/dots until it's scratched. Once it's scratched they bleed, get bigger, bruise, scar up and at times is there for months before it turns into a scar. These bumps do not go away. I keep getting them on my head and neck bad, shoulders, back, upper arms, and occasionally face. It looks like acne but it's not acne, no pus, no drainage, just blood. I been to 3 doctors and they are clueless and I have had my skin tested!!! No one tested me for LYME, one doctor said it's not that and the test is too expensive. Another said they have no explanation but going to treat me for folliculitus, which I know don't have because I never was in a hot tub or dirty water and they said it would clear up on a week bed it's been 3 years. They still seem to think it's that because they have no explanation. I need to see different doctors and someone that will test for Lyme just to rule it out if that's not what it is. Help!!! Has anyone ever experienced this????

Occipital Neuralgia, Osteoporosis, Fibromyalgia, Depression, Anxiety
GallBladder Removed, Appendix Removed, Full Hysterectomy, Nissan Fundiplication w/ Hiatal Hernia Repair, GERD (esophagatis), Cervical Cancer Stage 1 (2008 Survivor), 2 Cesarean Section Deliveries, DDD-lower back, Osteoarthritis, Sciatica Left Leg/Knee pa

Yes I have the twitching really bad especially around my eyes, and lips.