Keep getting worse and worse, at 7.5 months. Very worried about CFS

But I have a appointment with infectious disease specialist at standard soon.

When did you get the test done?  Lyme is a clinical diagnosis.  So I'm not saying it is downright lyme..but the lab tests..particularly the ELISA test doesn't mean much (many false negatives).  You need to look for lyme-specific bands on the western blot.  Long-term antibiotics is often prescribed at first and sometime multiple antibiotics and by long-term probably start with about a couple months.  Also, they need to test you for "co-infections" which I am hesitant to call it since sometimes you can have the other infections with the absence of lyme such as bartonella, babesia, mycoplasma p., ehrlichiosis, which can all present with neuro symptoms.  

I first thought I had lyme, and my western blot results (which I had done multiple times) weren't very convincingly positive.  But my bartonella and babesia titers came out very positive and thus I was diagnosed with acute bartonella and babesia after 6 months of searching for a diagnosis.  The treatment is very similar in principle for those infections like lyme so only LLMDs know about them as well.  Within LLMDs there are some "quacks" out there that just want to use weird alternative treatments and take money from you so be careful for those guys.  Often they try to sell you their own products, talk about some new experimental therapy, etc.  Always go with a board-certified doctor who have scientifically proven publications they base their treatments off of.  Which I was lucky to find..

Unfortunately there has been a lot of controversy surrounding lyme and tick borne diseases in the past decade and many mainstream infectious disease specialists not only tend to be reluctant to test for lyme but some don't even want to see if you say you have lyme when you don't appear with an EM rash and bite.  But according to some statistics, over 50% of patients do not get the bulls-eye rash and ticks at the lymph stage are so hard to detect you never even notice you ever were bitten.  The solution to this for the so-called "traditional" infectious disease doctors is to give you 2-3 weeks of doxycycline maximum and tack it off as "PTLDS - Post treatment Lyme disease syndrome" or anxiety/depression/cfs.  So sad the state of health care here in the US.  Sometimes the 2-3 weeks of doxycycline might do it...but considering how sick you are and how long you have been sick, I doubt that will be enough.

Going to an infectious disease specialist who doesn't know much about lyme will only waste time and money so make sure you do your homework on the specialist you go see.

My advice to you is to go through each specialist, see what they can do for you, you very well may have other chronic diseases that may be contributing to your symptoms...some you can see are:

-neurologist, to rule out myasthenia graves and other neurological disease

-endocrinologist, to rule out hypothyroidism

-rheumatologist, to rule out autoimmune disorders

But honestly looking at your symptoms it really seems like lyme to me.  I'd ask the ID specialist for another lyme WESTERN BLOT test and also tests for bartonella, mycoplasma, babesia, and ehrlichiosis.

Do you have any GI symptoms?  How's your sleep?

And for those who say "long-term antibiotics" is dangerous?  That is downright ridiculous. As long as you have a good doctor monitoring your blood work, and you take some good probiotics into your regimen while on the antibiotics, you should be fine.  

There are people who take doxycycline for many months for acne...and also for diseases like tuberculosis (similar to how lyme works) you must be on many months to years on antibiotics to fully eradicate the bacteria.  These gram-negative bacteria grow slowly and accumulate over time and consequently take time to kill.  These same doctors prescribe long-term antibiotics for tuberculosis and acne, but refuse for lyme because they simply just don't know and blindly follow the IDSA guidelines which are outdated and incorrect for chronic cases.  Furthermore, the controversy surrounding Lyme disease makes them reluctant to want to treat it if they don't have experience because it is a hard disease to treat and there can be risks associated with long-term antibiotics as there are risks associated with long term course of chemotherapy.  We do these things because the benefits outweigh the risks...but again, it's not a blind leap of faith..there is published medical data that people get better on the proper drugs and detox regimens.

Just PM me if you want more info.

Thanks for the input. I’m not sure what Lyme test I had but it came negative 

Hey Lob,

It's good to see a post from you, wondering how you are doing? Still thinking about you and hoping things have been more settled - message any time remember.

Craig

Hello Lob and Brent,

You are both my brothers in arms too, I really value all the kind words and input you guys have given me. I've been feeling a bit overwhelmed with my own situation and back pain and fears and things yesterday and today, so any prayers for me right now would be much appreciated.

I will keep you guys in my thoughts and prayers because you have been through some of the worst times I do remember, and can only imagine how painful some of those lows must have been for you. Don't give in guys, remember it's okay to rest, just trusting that God is there and knows your situation and is going to strengthen us all in our weakness - praying for that today more than ever.

Hang in there guys and do keep in touch, I view you two as friends and people who have said such helpful and kind things to me at some of the hardest moments I've been through lately and it means a lot.

Craig

Craig