my lyme is in brain not joints.

No body pains here. For me it's all in the head.

Dizzy,brain fog, Used to have Narcolepsy, Sinus like pressure/pain between the eye, light sensitivity. lots of constant Tinnitus. Crashing fatigue in the PM

Protocols: Currently ramping up on Buhner + protein, NAC, and Vit-C/Gluthatione IV 2xmonth.

Waiting to see LLMD for abx. (Initial Doxy dose done)

Post Edited (caramba) : 9/16/2016 9:46:00 AM (GMT-6)

I have Lyme in my brain and back/hips. I get major brain fog, brain pressure. I can't remember half the time what I was talking about. It's so annoying, but I am learning to just cope with it. I also clench my teeth and sometimes my hands tremor.

Finally diagnosed in June 2016 Was on doxy, then Zithromax and diflucan. Now I am on doxy and zithro.
I recently had blood work done and found out I have a Genetic defect called Mt h f r I am still learning about this.

Dans778 said...

Sometimes When I talk about it, I feel like people are looking at me like I have 10 heads...I have learned that I cannot talk about it with certain people

I have gotten self-conscious about it. When someone asks me how I am now...I usually say "I'm okay". I really don't want to get 'into it' anymore.

Although a few days ago I met a friend for coffee (tea for me) - someone I worked with prior to getting LD. She is an intelligent, thoughtful person...and I have always had a lot of respect for her.

She asked me how I was doing...and I told her that I was getting kind of self conscious about talking about LD...as I'm sure people are thinking 'It's been two years of treatment now...aren't you better yet?"

And she told me that she was seeing a physio for the past 3-4 months because of her hip being out...and was now getting acupuncture to help with the pain. And for awhile she had nerve pain...but was glad it was now gone.

Then she looked at me and said "I can't even imagine what you must be going through - having nerve pain with ALL your other symptoms for three years. You have been dealing with this for so long now...and you still are participating in life...getting out there....I can't even imagine"

Of course, I teared up...because it always happens when anyone shows me an iota of sympathy.

She's one friend that I can count on.

My neuro symptoms heavily out weigh everything else.

- A mix of dizziness, lightheadedness and maybe some vertigo but without balance or coordination issues. I don't even think anything is spinning so maybe I am using the wrong terms.

- Extreme mental fatigue. Body feels great, I WISH I could run 10 miles, but my brain won't let me. It's just beyond extreme exhaustion.

- Muscle Twitching. Mostly in right calf, but it does t discriminate against any part of the body.

- Fog - The fog has gotten a lot better, but my mind just doesn't feel clear and right.

Other then that my only other symptom is muscle aches at the site of rash (left thigh) and the same side hamstring and buttox.

I've had this for 2.5 months straight. Some days I show improvement and others I crash. Last Sunday was he worst day of my life.

I initially did a month of doxy/amoxi (not at same time)

Next was 26 days of Rocephin. The IV gave me some quality of life back but I'm not healed. I've been off the Rocephin for a week now. Monday (4 days ago) the dizziness/lightheadedness changed from constant to intermittent. Not sure if it's my body healing itself off the Abx, or if it's the anti vert patch stuck behind my ear.

LLMD prescribed me Minocycline and Cefrin. I am taking vert patch off tomorrow as well as holding off on the new abx for another 4-5 days. I want to see how I'm doing off them.

I had a very high eosinophil count which is typically a sign of allergy. Wondering if I may have been allergic to the abx all along and that's where this is coming from? Dizziness/lightheadedness didn't start until after beginning abx.

We'll see, if I don't show any improvement back to abx it is.

And I can totally understand a previous poster saying they wish they had Lyme anywhere else. I think that too sometimes. Nothing worse then losing your mind. Not being sure if you can drive today.

Ugh. Eff Lyme

Anti vert patch?..is it medicated

@Girlie.... I know what you mean. I get upset at times because the loneliness of the disease. There is no sympathy from the rest of the world either nor understanding. I have people constantly asking me if I am going to come back to this and that. Personally I feel those part of my life are gone. They do not get it.

@Dans778....I had a awful 2015....last year about around after September I begun the struggle. My dizziness is better most definitely. Yes I think LD in brain is not a good thing as it is the most difficult to treat as well.

Cr3ative girl how do you look at all of your mutations and find out if you are doubly double etc?? Can you explain the entire process to me in detail?

I got my genes done at 23andme.com. Then, there are various websites where you can plug in the data and get the data analyzed.

Geneticgenie.org is a donation site for methylation gene analysis
Livewello costs $35 I believe.
Mthfrsupport.com is a newer one and it sounds really good. I heard the founder speak on a podcast. She's brilliant.

I would start with the first one and get your feet wet. With Livewello, you can run lots of reports and find out all your genes, like the mold gene, the gluten gene, etc. Hope that helps.

High eosinophils count may be due to parasitic infection too.

Yes flagyl and tinidazole cross brain barrier well theyre smaller particles.

I don't know if birthdaysuit's claim that brain/cns penetration usually precedes joint penetration is correct or not. I only know that in my daughter's case, the reverse occurred. She first had joint involvement by at least a year. The scenario was somewhat different also. There was no ABX involvement until after there was both joint and Brain/cns penetration with neurological symptoms. Her immune system apparently didn't really kick in until after the joint penetration was well established. Then she had fever for about 4-5 months,and after that her body temperature fell to subnormal. When her body temperature fell her WBC plummeted as well.

Looking back, the beginning of Heather's illness can be linked to the engorged tick found in her armpit on a specific day. However, there is more to the story than "Borrelia Burgdorferi." There is also the matter of coinfections, as well as other infections acquired subsequent to the original exposure. Heather has always attracted mosquitoes like a magnet. She had a few major exposures to a lot of mosquito bites after her exposure to the tick bite. I hold that the progression of time was not the only factor in the expansion of her symptom list, but also the subsequent inoculation of additional pathogens.

I don't know whether the children of Lyme Connecticut first suffered from neurological issues. However it was the development of Juvenile Rheumatoid Arthritis that attracted Polly Murray's attention. One would think that if many of the area's children first developed neurological issues, that somehow that would have attracted attention as the first type of symptom.

I have read articles quoting physicians that believe that the normal progression is from joints to neurological. I realize that it may appear that I am trying to make a case for the claim that joint penetration precedes brain/cns penetration, but I am not. I have not noticed any established chronological pattern based on my readings of the posts of many thousands of forum members since 2008.

abhi- As far as an isolated protocol for neurolyme is concerned, I can't help you there. Neurolyme presentation was but one of many types of symptoms that my daughter experienced. In the end, all neuro symptoms disappeared as a consequence of a comprehensive treatment approach.

Don

FYI I finally used Livewello and it was only $20. I found the link on Facebook and it does give a ton of more info some of the Health reports are also much more easier to comprehendbut you have to dig for it which i didnt initially. This is the link i found floating around on Facebok. This genetics stuff is very complicated indeed. Tips For Using Your Livewello​ Gene App
https://docs.google.com/document/d/1uxRO5GVNEYufxtaDZVP4nhMRzNZ0LxQ2w1TF53_LDqQ/edit?usp=sharing

cr3ativegirl said...
I got my genes done at 23andme.com. Then, there are various websites where you can plug in the data and get the data analyzed.

Geneticgenie.org is a donation site for methylation gene analysis
Livewello costs $35 I believe.
Mthfrsupport.com is a newer one and it sounds really good. I heard the founder speak on a podcast. She's brilliant.

I would start with the first one and get your feet wet. With Livewello, you can run lots of reports and find out all your genes, like the mold gene, the gluten gene, etc. Hope that helps.