Tired of Lyme. New to this forum

I've been reading post after post of everyone's symptoms and issues and it makes me sad but also glad I'm not alone.

I was on a previous forum and when I would ask about a symptom, no one else had ever had that symptom. I also posted about the protocol I'm on and everyone would freak out!

I tested positive for Lyme and RMSF in August of 2012. I had a rash on the inside of my leg in Spring of 2012 but everyone who looked at it said it was something fungal and suggested creams. My husband and I went to Mexico that summer and after we returned the rash was a perfect bulls eye and that is when my joint pain started.

I did the usual treatment of doxy for a few weeks and then I felt better. In May of 2014 I went from going to the gym to barely able to sit or stand due to lower back pain. I went to many doctors and even had steroid injections over the summer. I finally broke out all over with a lyme rash and I knew exactly what it was. I was devastated.

I joined a forum and searched out an LLMD. The first person I went to started me on heavy doses of abx and flagyl and I spent a stupid amount of money on different things she said I would need. Two weeks in I started having jerking spells and could not work. I called and asked what to do and they said "I don't know, go see your regular dr." Really?? My general dr sent me to get an EEG, i'm guessing to see if I had MS. NOPE.

Finally found another LLMD who told me the reason I was jerking was because I had so much inflammation in my body it was toxic.

That Dr. started me on chronic inflammation therapy right away. First was to stop taking every thing the other dr gave me and to start taking benicar. Well that was easier said than done. I could not get a prescription for it because i did not have a pre existing blood pressure condition. I had to start over three times because I ran out of samples or I was arguing with my insurance.

I finally got enough benicar (had to order it from overseas) and the process started. I'm headed into my 3rd year of treatment and I'm wondering if there is any light at the end of the tunnel.

I'm taking 20mg benicar 5 times a day to keep inflammation down. I'm ramping up with doxy, zith and clynde.

In a few weeks I will be at the maximum dose I can take of all my abx. The slower treatment has allowed me to work with the exception of days that I just need to sleep.

I always have joint and muscle pain. I take 500mg of magnesium three times a day. I take omeprazole daily because I have yet to find anything that will get my GERD under control.

After this treatment, what happens if it doesn't work? My Dr. has suggested IV antibiotics but I'm not sure I want to go down that road.

I just wanted someone to read my story. Every one of my symptoms are on that huge list. So I know i'm not alone. I think my husband is slowly getting tired of this cause I'm often don't feel well or the money to go to the dr once a month or to order meds.

Lyme rash does appear in a bullseye form. Rocky Mountain Spotted Fever has a rash as well. I think RMSF rash looks like a bad case of chicken pox.

Steroids aren't a good idea with Lyme infection, unless it's absolutely necessary.

Are you detoxing to try to keep the die off toxins moving out of you?

There are a more than a few herbal protocols that are being followed by members here, with varying success, from still in progress to healed but reinfected later on. (Not relapse, re-infection).

I personally like the control of using herbs, and how they also help the body's organs function better. But sometimes using an herbal protocol can take longer than coming in with abx (antibiotics) iv.

The LLMD that suggested you had so much inflammation in your body that it was toxic was partially right.

If you weren't de-toxing, that is helping your overworked lymphatic system and organs move the die off toxins that I mentioned, through you and out, they keep recycling and mounting up, which does cause horrendously bad symptoms which are called a "herx"

Too many doctors and even LLMD's don't get into the importance of de-toxing, but I and many others on here can tell you it makes a difference. There is a great deal of info on that and suggestions, on our first page of the intro.

Thanks mm, I'm working on my diet. I can honestly say that is the hardest part of getting well. I'm pretty good at staying away from sugar but the carbs are my downfall. Still a work in progress.

Hi, welcome to our community!

Diet is very important. We have a lot of inflammation in our bodies, and certaoin food promotes inflamation. It is essential to stay away from gluten, sugar and dairy.
Personally I eat carbs - brown rice, quinoa and fruit in moderation. Only if you have yeast issues, then you should cut out all the carbs.

Hello and welcome! Praying you'll find the answers you need from this knowledgable group ☺

modooley said...
Thanks mm, I'm working on my diet. I can honestly say that is the hardest part of getting well. I'm pretty good at staying away from sugar but the carbs are my downfall. Still a work in progress.

It's hard. Trust me, I know. But I honestly think it is the single best thing I did to help me feel better.

Hi modooley! I see you posted on this forum in January...but I think we didn't realize you were a new member then.

So, a belated welcome to you!

I think it's really crucial that you get on a detoxing regimen..as others have mentioned here.

Hi there welcome

this forum is brill everyone is very kind and helpful. Like you I was given a fungal cream for the bulleye rash with flue onset As I never saw a tick So it went untreated by nhs uk. I also had 3 western blott positves for borrelia by nhs uk They gave me wrong results 3 times reported negative when positive and filled these away It was 5 years before I learned about these positves a neurologist uncovered these. I accepted the nhs short cource of doxy Thry refused to treat until bloods showed negative I did nothing until oct 2015 I tried 8 months cowdens with no effect
last few months been trying to establish dr buhner My stomack issues halt me managing it 3xdaily will try build up slower.
anyway I have added in gouteng and lions mane both for neuro lyme Seeminly you can take T

bluelyme, yes I'm in the states. Oklahoma to be specific. My vitamin D levels were opposite of each other so I'm assuming that is why he started me on that protocol.

Thank you for all the warm welcomes and your individual stories. I feel that even after having this for a few years, I am no where near an expert and am reluctant to give advice on things. I only know what works for me.

Thank you for the detox info. I'll be reading up on that.

My brain doesn't allow me to read long paragraphs and I tend to skip over most of what people write. Any suggestions on resolving this?