Seeking support and advice.

Hello everyone. This is my first post -- please bare with me....

04/2015 - I woke up extremely sick and went to Urgent Care with: Dizziness, Loss of breath, extreme fatigue, short-term memory loss, increased heart rate (135-140 sitting), roof of my mouth + upper lip completely numb. Was sent to ER and then home, saw Primary Care PA next day. Ran Lyme test and it came back with band 41+, but not a positive diagnosis. Since then I have not been able to recover enough to go back to work.

04/2015 - 07/2015 - Saw many specialists: Primary Care, Cardiology (ran Echocardiogram, put me on Verapamil, which has helped with heart rate), Infectious Disease (laughed me out of his office), Rheumatology (said there is no way I have Lyme), Neurologist, Phycologist, ENT, Nephrologist. and no one could figure out what was causing my symptoms.

07/2015 - Primary Care PA tells me to go back to work and it is a phycological issue.

07/2015 - Found a LLMD in another state. He immediately ran IGENX blood work + Quest labs, SPEC scan (negative), EEG (negative), and started treating me with Doxycycline for 2 months - initially got better, then went backwards.

07/2015 - 2 Bands came back positive on IGENEX labs, Q-Fever IGG Phase II SCR positive, Mycoplasma positive, Ehrlichia positive, Anaplasma positive. 07/2015 - Started Rifampin + Azithromycin and several supplements.

09/2015 - More IGENEX labs done. Babesia Positive, Bartonella Positive, Extremely low Vitamin D level, Immunigloubin E quite high, High RBC, Homocysteine level high, EBV high, CD57 low.

10/2015 - Added Plaquenil

11/2015 - Supposed to add Minocycline to the mix.

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I have been following the "lyme diet" - no sugar, gluten free, minimal diary.

So, I'm quite stressed out, I'm youngish (about to be 25) and my life has come to a standstill. I'm no longer working, and haven't been myself in almost 7 months. Six months up until 04/2015 I was tired, but able to function.

Does it seem as though treatment wise I'm on the right path? Any ideas on how to speed this process up??? Is this the normal process? Sorry to ask sooooo many questions!

Hi Wishiwasbetter!
Welcome! I'm so glad you joined our community!!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

And that's not a lot of questions - yet!! We understand that the learning curve with Lyme is a killer, so we do try to answer as many questions as we can. Somethings you need to understand:

There is no "one treatment" to successfully treat every person. These infections, particularly Lyme, adapt to our bodies so well that each of us has our own unique set of symptoms and deficiencies to deal with. The Lyme bacteria like to hit the weak areas and hang out in tissues, organs and bones, not in the blood stream where they can be easily killed.

There is no fast way to heal, it all takes time, and a lot of it usually. The Lyme bacteria replicate in the body only every 4 -6 weeks instead of hourly or daily as most bacteria will do, so it takes a lot longer to get rid of the Lyme bacteria.

While I'm not comfortable encouraging people to stay on Doxy for long as it's known to push the Lyme bacteria into it's cystic form, the addition of other abx will definitely help. I healed with herbs only, so I don't know enough about the abx (antibiotics) that you will be using, but there are others here that will be along shortly (I'm sure) that will be able to comment about them.

You will need to help your body detox as these infections often overwhelm the body with toxins because as the Lyme bacteria die off, they release endotoxins. We have a great list of detoxing ideas in the "New to Lyme? Start here!" thread mentioned above and you can go to this site to read about more detoxing ideas: www.tiredoflyme.com/detox-methods.html

Keep asking questions!! We are here to help you learn as much as we can and to help be sure that you are getting reliable information!

Thank you everyone for welcoming me to the community! Yes, I discontinued the Doxy before starting the Rifampin. I see a physician who specialized in Lyme, and I agree her approach is aggressive but I'm pretty sure I'm comfortable with it at this point. I also take VSL #3 Probiotics, and Florastar which help since all the meds aren't great for my GI issues. I've also been to a Naturopathic MD who is providing me some more homeopathic treatments to help with everything. I feel so much better just knowing there are so many other people going through this who understand. I keep telling people although I look okay you don't understand how I feel!!! I look forward to continuing to ask question and contribute what I can to this forum. Thank you all for being here!

Post Edited (wishiwasbetter) : 10/25/2015 2:12:55 PM (GMT-6)