Finally got an answer after 5+ years... Advice please, worried

You are in the right spot hun, worrying is OK but keep in mind things will get better but they might get a little worse before they get better.

I just posted on another thread how ironic it was that our pets get way more awareness with this disease then humans.

Most docs take a slower approach to prevent this. In most cases I would say no. What has the Lyme doc recommended for you?

Also, make sure to check out the New to Lyme thread at the top. DETOX DETOX DETOX! To keep yourself from feeling so bad while herxing detox is crucial. Lots of H20, modified diets, epsom peroxide baths. Some things like parsley (a lot, I use half of a bunch), chlorella are also supposed to help bind the toxins that cause the herxes.

I also recommend www.buhnerhealinglyme.com. There is a lot of good info on there if you would like to look into or start with herbal remedies which tend to be less harsh on the systems. 

Post Edited (opugirl) : 2/15/2013 11:14:19 AM (GMT-7)

Thanks for your responses! Yes I actually see a very great Lyme specialist. His name is Dr. Swami and he is in PA. I'm in Ohio and it is about a 5 hour drive. He is treating me so aggressive bc cardiac CT shows swelling if the left atrium, I am having signs of Bells Palsy, and severe neurological problems. He told me I will be down and out(bed bound) for awhile and will need someone here with me full time. I'm just worried if it is way too much. I was supposed to start the antibiotic already but my family "feels I should be monitored in a hospital or closer doctor." Plus, my son has some health issues that need dealt with before I start.

Just me- absence "blank stare" or complex partial. That is part of the reason I am on a leave of absence from teaching. I have been off for two years now for severe neurological problems. Just FINALLY diagnosed this month after years of searching! I take Depakote. What o you have and what med have you tried?

Momof2,

You have come to the right place! We are here for you.

Please remove your LLMDs name. We do not share Drs. names on here publicly for a variety of reasons, one being that we want to protect our LLMDs due to the controversy over lyme disease and treatment. You can say Dr. "S" in PA.

I am in Ohio also! I have heard of Dr. S and Dr. J in PA. I am seeing a wonderful LLMD in IN, Dr. L. Where are you at in Ohio? I have lived in OH my entire life, the Columbus area, so I believe that I was infected in this state even though Drs. claim it doesn't exist here.

I became very ill after my second pregnancy. I was ill toward the end of it, but became so sick after delivery that I was in and out of the hospital, bedridden, vomiting daily, etc. I too was all over the place, trying to figure out what was wrong-OSU, Cleveland Clinic. I researched and continued to search for answers and kept coming back to LD. It was then that I found a Lyme Specialist in OH (the only one in this state) and he ordered the Western Blot and it came back positive. I was diagnosed and started treatment 6 months ago, 1 year after my daughters birth.

I too was a teacher! We have a lot in common :o). I used to teach Kindergarten. Although I stopped teaching when I had my first child 7 years ago. That's good because there is absolutely no way that I could teach now.

It's wonderful that you found answers. This will be a long, tough road, but you will get better. It's going to take time and a lot of will, but you can do it.

Your Dr. is correct, you will need for a while. As I mentioned, I have a toddler (18 months) and a 7 year old son. I used to have full-time help and I now have part-time help 3 days/week and the my husband's home on the weekends. I hired from care.com and my mom comes one day/week. It is very hard to have children while so ill, but at the same time, that's what keeps me going. There have been times when I felt like I was dying and really wanted to, but it was my precious children that kept me fighting. Your children will be your motivation to fight this and get well.

When you begin abx., your symptoms will worsen due to the herxheimer reaction (toxins released when bacteria dies off). However, make sure to start on abx. or herbals SLOWLY. My first LLMD started me on high doses of 3 abx. within 1 week of each other and I became so severely ill that I seriously thought that I was going to die. I was completely unable to eat or drink and could barely walk. It was way too much way too fast and wasn't necessary. The one good thing was that I knew it was herding so it even further solidified the diagnosis. Just start slow though-start at a low dose of 1 med. and slowly increase it. Assess how you're doing and then add the next one in.

Another important thing is to detox. There are many ways to do this - alkalseltzer Gold (hard to find, but you can order online),epsom salt/hydrogen peroxide baths, drinking warm lemon water, taking activated charcoal or Chlorella, using a sauna, etc. There is more info. on the "new to lyme" thread on here. Go ahead and start this now. Just start slowly because some of it can kill the bacteria and actually cause herxing such as the baths and sauna.

As far as hospitalization, most Drs. will not hospitalize patients for lyme disease treatment unless it is definitely life threatening. For one thing, the only drs. that really have admitting privileges, are infectious disease drs. that follow IDSA guidelines which will not effectively eliminate a long-term LD infection. I do know of 1 person that was hospitalized in PA for Lyme treatment. It had caused a heart condition which would have been fatal. He was seeing an infectious disease dr. in an area of PA where LD is prevelant and because it was life-threatening, they hospitalized him for the initial IV abx. treatment. From what I understand though, it is rather rare for them to hospitalize for treatment.

Do make sure that you continue to be monitored by your dr. and report any severe worsening of symptoms.

I hope that helps!

Mystery Illness- thanks! I actually, on my own (smart me, lol), before having a diagnosis started a "detox" program because I was having such a bad flare up. I was on the Dr. Oz 3 day cleanse where you blend up everything (kale, coconut oil, blue berries, banana, flax seed, etc) and have three smoothies a day. I was doing well until day three and I became severely, severely ill. I wonder if this was a sort of herxing?!?!

I also take the Epsom salt baths but never with peroxide ( however I LOVE peroxide) I use it like that father in My Big Fat Greek Wedding uses Windex hahaha!

We are very close to each other. My sister lives in Hilliard. We should get together! The kids would enjoy playing! That's another thing that worries me, my 3 year old has severe allergies, cold urticaria, auto immune issues, etc. He is allergic to EVERYTHING, nuts, cold/hot temps, eggs, cats, dogs, maple trees, mold- those are just the ones that require an epi pen jr. He has 20+ others. You would never know it though he is gorgeous, smart and super spoiled ( as is my daughter) AND YES I COMPLETELY AGREE- they are what keeps me going every day!!!!

Long story....scary!

Post Edited (MomOf2WithLyme) : 2/17/2013 9:47:45 AM (GMT-7)

nspeedracer said...
my herxes are like waves of hot flashes, sweating, nausea, light headed, and i get uncontrollable crying episodes and anxiety attacks.
i have to take care of twin 2 yr olds and a 5 year old, and yes, while herxing..
youll get thru it. it sucks but at least your finally going to make progress!
my kids some times draw pictures of mommy crying or throwing up ...
hopefully they wont even remember mommys illness, theyre doin fine so far

nspeedracer: I have twin 9 month olds and a 3 year old and that is my biggest fear that I am ruining their childhood with my illness; I also fear having passed Lyme to them as I have been very sick since my 3 year old was born.