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Posted 7/25/2017 12:50 PM (GMT -5)
I have been told I have Lyme for a while and yet to do any real therapy. I have taken ABX for other things and had relief of symptoms with some and bad herxs with others. I hate pills and drugs for that matter so I have stayed away as much as I could throughout life
Anyway I am sure I am not the only one who is like this. Tell me a little about the battle you fought to come to grips with starting treatment. I know I need to do something but absolutely terrified I mean TERRIFIED of making things worse. Or heart issues from ABX or C diff or Stevens-Johnson Syndrome or..or..or..or pulsing creating resistance to something going on other than lyme. The drama is unbearable.
Bactrim gave me horrible side effects of light sensitivity and altered my EGFR function. Doxy I felt great but had a stomach pain two weeks into it, Flagyl I felt horrible on but after felt great. All taken for reasons other than lyme. Tell me your story am I looking too much into it? I have talked with other Dr.'s not lyme related who said its nothing just be careful of bacterial overgrowth.
Posted 7/25/2017 2:34 PM (GMT -5)
I know that fear you're talking about. Before my one and only tick bite in 1993 I was never on an abx. I didn't take meds of any kind. Not even supplements. I was healthy and lived a clean lifestyle. Shortly after the tickbite I got really sick really quickly. Neuro sx - vertigo, dizziness/balance problems, weakness in limbs, facial numbness, eye pressure/tearing, tingling/skin crawling sensations, panicky feelings, feeling lost in familiar places, brain fog, heart pounding & slow heart rate, feeling faint, profound fatigue, internal vibrations.

I started tx 6 weeks from the bite with an Internal Med. dr - 250 mg Zithromax and got much worse initially. Treated for two years and was in remission for about a year but relapsed.

Retreated same 250 Zithromax - remitted for a year & relapsed again.

Retreated with Zithromax & doxy & went into remission for 12 yrs but I did have an occasional minor sx flare.

Then sx started creeping back in and got really bad in early 2016. I'm seeing a LLMD now & retreating on Tetra/Zithromax/Liposomal Oil of Oregano. I did take Omnicef for 3 days first but had bad diarrhea and was switched to Zithromax.

My protocol is conservative compared to most b/c I'm extremely sensitive to meds. Beacause of my experience with antibiotic associated diarrhea I'm reluctant to use the abx that are more likely to cause c-diff. Tetra & zithro have less impact on intestinal flora & I'm tolerating them fine. I've made a lot of progress over the last 14 months but I hate taking them. I know how you feel, I really do. For me there is no alternative, I have to treat. I have tried a couple of other herbals but I'm even super sensitive to those although I do intend to explore them more now that I'm feeling better & can read and absorb info.

I'm pulsing this time around and find it much more tolerable than straight therapy. It gives the body a break and apparently allows the immune system to gradually take over. I hope this helps. If you have any questions please feel free to email me.

Post Edited (Octobrsky13) : 7/25/2017 3:14:12 PM (GMT-6)

Posted 7/25/2017 3:51 PM (GMT -5)
I think we can definately over think these diseases. The more I research the more confused I get. I am seeing a new LLMD next week and plan on following his protocol without blinking an eye. Look, you just have to dive in and do it. What choice do you have? You don't want to let these buggers to take over your life. You may hurt a little more for awhile but you will eventually feel better. Just make sure you detox really well. You could start doing that now. Grab the bull by the horns....my motto.

Patty
Posted 7/25/2017 4:54 PM (GMT -5)
Thank you Octobrsky13 for sharing
Summer 16 you have been treating for 5 years now and going to see on new Dr ?? Thats a long time of treatment. Was that constant treatment or on and off? The thought of 5 years is depressing!
Posted 7/25/2017 6:17 PM (GMT -5)
GNSL-

I'm not sure which scares me more - the disease or the treatment. It's all bone chillingly terrifying, isn't it?

Stevens-Johnson syndrome is terrifying. I've worked with two patients that had it, and I personally know someone that survived it. If you haven't googled it, then I would suggest you resist the urge to do so because I don't think it would be helpful. I will tell you that it's very rare, and it can be triggered by something as "benign" as Tylenol. So, try to get that one out of your mind.

There's a lot of whatifs in life, and I'm trying to distract myself as much as possible with life itself. Whatever brings you joy, do it. Spend time with the people you love.

I researched the heck out of this disease and read everything I could get my hands on for months until I realized that the disease had taken over my every thought.

If it makes you feel any better, I'm supposed to be taking a third antibiotic right now, and I'm too chicken to restart it. You're not alone.

May the force be with you,
Denver1
Posted 7/25/2017 6:42 PM (GMT -5)
Also forgot to mention that sometimes I think my fear is a symptom. I believe it to be a psychological manifestation of the disease process. After all, if you told me I had stage four cancer, I wouldn't really question whether I needed harsh toxic drugs to heal.
Posted 7/25/2017 7:14 PM (GMT -5)
GNSL, my story is a bit different than others. I wish I had more insight 2 years ago. I started treatment the end of 2012 with antibiotics. It was a bit tough at first but I wasn't told about detoxing, unfortunately. Nor did I pay attention to the importance of it. I started feeling better after a few months with lack of energy being the worst symptom. I had a setback in 6/2014 from extreme stress due to my husband's brain bleed. He was hospitalized for 3 months and almost died during that time from sepsis. I was with him every day from early morning to late at night and also spent many overnights with him. When he finally came home I tube fed him 4 times a day, bathed him daily and took him to rehab 3 days a week for months. As you can see, I was quite functional. My LLMD decided to keep me on only 100mg of doxy while I saw a functional chiropractor to work on my methylation issues. We knew I was heterozygous for the mthfr gene from previous testing which prevents you from detoxing well. My LLMD didn't push hard on the antibiotics because of this issue. I was working on opening the pathways for 1 1/2 years. This past January I started to backslide and started Buhner's protocol but was uneasy with it. I need a doctor to guide me until I get some of these infections back under control and then add in some of the many tinctures that are sitting in my cabinets. So, in hindsight I should have continued with my antibiotics 2 years ago. I feel I am starting all over again.

Patty
Posted 7/25/2017 9:22 PM (GMT -5)
Summer 16 "sepsis" thank you I had forgot about that too lol...
I know what you mean though if I would have started 4 years ago when all this began I imagine I would be well through it. That is why I have decided hell or high water its time. Thanks

Denver1 the old saying "fear of death is worse than death itself" but doesn't help any smile. Too late on looking at the SJS pictures, I went down that road a long time ago. I also you can get a test done to look for that gene to see if your at risk. I plan on having that test. HLA-B*1502 gene
I too on and off over 4 years let this consume me, it never leaves your mind but sometimes its overboard. When symptoms are bearable I do well but when I feel it, I start searching again.
Posted 7/26/2017 3:43 AM (GMT -5)
I had a sulfa reaction but was only left with vasculitis and porphia thank god ..i started bvt right away but i paced for 3 months before doing iv abx ...im glad i did ..
but there are many ways to skin this cat scratch
have you looked into rife ,essential oils ,herbs like andrographos smilax houttynia ,artminsin,
mhbot,10 pass,hyperthermia ,uvlrx,uvb etc etc
i stuck hydrogen peroxide in my veins before abx there is ozone silver
there is essential medica ,Byron white
beyond balance ,rizols ,biopure , cowden is kinda weaksauce imo but there is a lot of snake oil ,price of treatments is the thing that stops most

or wait for ms als symptoms ,ask stephen hawking how his quality of life is ...
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