New to all this...need some hope

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sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 272
   Posted 12/28/2017 9:43 AM (GMT -6)   
Hello, I am pretty certain too, i am infected. my story is similar to others here.

To the best of my recollection, I have been bitten 21 months ago. i had no symptoms for 6 months initially, then symptoms started and tried to resolve with my primary care doctor and local health network. since then i have been bounced around to specialist after specialist (Neurology, Infectious disease, ENT, etc), 4 different primary cares for various issues that no one can help with, and in and out of ERs with no resolve. every time no conclusive diagnosis occured, it always went back to being labeled as anxiety/depression

this December i got really sick with flu like symptoms, and all the my lyme type symptoms had flaired up worse than ever...that prompted me to go back to a new primary care...this time the new primary care listened to what i was saying, and my history of odd things going on. she started me with the routine dosage of dox antibiotics (started on 12/26). I have been tested multiple times with Western Blot for past year and half, and they always come back negative. This time we ordered PCR test. I also had the Igenex test kit sent for complete lyme panel and complete coinfection panel, they should receive it today. in addition to that, I am waiting on getting my appt scheduled with LLMD in North NJ.

i am not sure what else i can do with this now, but the symptoms and an accompanying anxiety have been weighing heavy.

what can i expect in the days to come, as i start ABx, wait for test results, get into my LLMD? some questions i have is if my PCR test comes back positive this time, will this be enough to start some advanced antibiotic treatments (IV) through my primary care/infectious disease? or, i am pretty much on my own like its been, until i can get into LLMD? Related to the anxiety of this, will taking ativan or other antianxiety drugs, inhibit the usefulness of the antibiotics (i understand the pitfuls of benzos, would only be taking them on case by case basis during times of panic.)

thanks in advance

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 12/28/2017 10:37 AM (GMT -6)   
Won't lie to you and say you're not in for a tough battle ahead. You are, but just remember that it's temporary, and you can and will get through it. Sounds like anxiety is your worst symptom? If so, I can totally relate. I've been hanging on by my fingertips many a time due to the anxiety/depression brought on by these bugs. But right now I'm in a good place, and you will be too again.

Things that have helped me:

Alka Seltzer Gold--not sure what exactly the ingredient is that helps, but it never fails to make me feel a tiny bit better. Have to order off of Ebay/Amazon, and it HAS to be Alka Seltzer GOLD. smile

Hemp Oil--just discovered this during my most recent bout when my wonderful naturopath gave me a bottle that she had at the office. Helps to take the edge off so I can sleep when I wake up in the middle of the night with anxiety.

Re the Ativan. My LLMD prescribed Ativan to me when I was really, really struggling. I took it very rarely. But for me, it was really nice to know I had it there, if I needed it. I used it a few times to sleep. Once or twice during the day when I really, really felt awful. You really do have to be careful, because the withdrawals from these guys are awful if you get "hooked," but it sounds like you're aware of that already.

Most of all--hugs to you. I know what you're going through.
Probably sick for more than 20 years. Crashed in Aug. of 2013. Completing 12 months of treatment as of Aug. 2014, and feeling much better! Have taken a wide variety of antibiotics, antiparasitics and herbals for blood-diagnosed Babesia, Erlichia and Anaplasma, and suspected Bart and Lyme.

Bitten by two ticks in March of 2016, which seems to have set off a new infection.

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 272
   Posted 12/28/2017 10:50 AM (GMT -6)   
THanks a lot, i appreciate your feedback.

my struggles are a few, the muscle twitches, tingling in my face, those two alone drive up my anxiety, then all that with the uncertainty or unknowning of what is really wrong here...since it can be diagnosed effectively with a test. of course the stringing along i went through for over year now, adds to my uncertainty.

i want to feel confident knowing i will get results, i am on the right track now...but still not there yet. sad

i will start looking into the alternative options for various treatments in the days to come. for now, it i will use the ativan only when needed, as a security blanket if i need to fallback on. Just wanted to ensure that wont prelong or create any lack of effectiveness issues with the antibiotics

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/28/2017 11:33 AM (GMT -6)   
Sierra, so sorry you have those negative test results. I got those too.

I don't think the ativan will hurt on an occasional basis. You do sound like you know the pitfalls.

What you can be doing now is learning to eat well for this disease. If you go to a doctor and you are put on antibiotics, probably the most important thing is to learn how to get good bacteria back into your gut that those antibiotics will be killing.

Another important thing is to start detoxing now. We come in contact with toxins daily and our body knows how to take and eliminate those every day. But, when we add in the added toxins of dead spirochetes, antibiotics, and all those regular daily toxins, it can be an overload for our body systems. You need to detox daily with multiple methods.

Starting this now will put your body in good condition for treatment.

Here is a thread about how some of us detox -- /www.healingwell.com/community/default.aspx?f=30&m=3602759

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2291
   Posted 12/28/2017 11:54 AM (GMT -6)   
Hi and welcome but sorry you are having these symptoms and I sure hope you begin healing soon.

Not sure if you meant you had scheduled an appointment with an LLMD or waiting....I would schedule one since many LLMD's have long waiting lists. I would suggest to be put on a cancellation list if they don't have an appointment right away.

If they have a deposit fee for first visit it should be refundable if you need to cancel, just ask to be sure.

Testing can be unreliable, but Igenix is one of the better labs to test with.

Many people test negative even though they have been clinically diagnosed by the presentation of their symptoms, their exposure to tick areas, and history of tick bites etc.

Not sure if you have had a chance to read our"New to Lyme" start here thread at the top of the page but it has very useful and important information about detoxing, Lyme, testing, symptoms and more.


Well take care, Jo

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 272
   Posted 12/28/2017 12:21 PM (GMT -6)   
Thanks Pete, for your support. I eat pretty good now, a largely organic diet for a number of years. from being sick earlier this month tho, i lost weight about 10 or 12 lbs. so trying to get some weight back now, but my appetite is not quite there yet. i will start reading about detoxing, i have also ordered the buhner book from amazon too.

thank you goshawk. I called 2 LLMDs this week. one of them is not in this week to schedule. the other one is in today, but they said they would call me back to schedule. if i don't hear from the by 4 today, will call back again.

my antibiotic prescription runs out on 1/16/2018, so i hope its possible to continue antibiotic treatment even if i am not able to be seen by LLMD by that time. Not sure if my primary care will refill, or if my LLMD will continue it once i am able to schedule.
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