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

Hey guys, having trouble right now. My symptoms started in late January, and they weren’t that bad back then, I did feel unwell, but not so terrible. 

They got better through the first 3 months, and I felt about 70% healthy in the beginning of May. 

Then in Late May I crashed and I thought it was just a normal setback. But I just kept getting worse and worse from then on. 

Since the crash I have gotten some new symptoms too, before the crash the only  symptom was fatigue. Now I have symptoms like stuffy nose, brain fog, muscle and joint pain, fever, (which started in July), and the pins and needles feeling. But the worst symptom is the fatigue, (of course). 

 I feel worse than I ever have, and I have just been hitting newer and newer lows because I have been getting so much worse. I feel SO much worse than I ever did before the crash, and I have just been spending the days mostly in bed. I’m so weak it’s incredible. 

I don’t know why or how I’ve been getting so much worse with no improvement, but I’m so worried it’s CFS. 

Sorry for so much complaining guys, I’m just really worried and having a hard time right now. I’m really worried that I will be stuck with CFS, and I don’t know how bad this will get. 

Looking for some encouragement right now, or atleast to know more of what’s going on. 

Thanks guys, 

Youngboy

Hi, your symptoms sounds very similar to mine.  I got acutely sick around December of last year and made some progress over the next. couple months then got drastically worse starting late April on and was thinking CFS too.. but after seeing 11+ specialists...I finally got diagnosed with lyme and co-infections.  Do you remember getting bitten by a tick?  Or were you ever out in the wilderness before you got sick? Even if you say no to those questions, it doesn't necessarily shield you from lyme and some of its co-infections.  I'd get tested immediately for lyme as you can recover if you get treatment right away.  Traditional (ignorant) infectious disease doctors might not want to test or treat you.. you need to find a LLMD (lyme literate medical doctor).  After being sick for about 9 months, I am finally feeling much better again (though not 100%)...I am getting there and hope to return to work, gym, and my active lifestyle soon. Was never sick before, I was a young 28 year old male gym junkie with full time job and other things going on in between...don't let doctors convince you it's psychosomatic unless there is reason to do so.  YOU know if you have depression or anxiety. PM me for more info.  

Hi,

I think this is how it often works! You need rest and more rest!!

Eat healthily and drink plenty of fluids.

Take supplements too. Don’t overdo things when you have a good day x

Be careful with the LLMDs though. Personally know few cases where they prescribed year worth of antibiotics for lyme. Furthermore, the patient testes negatively with state assigned doctor but possitively with private. Just be careful, 7,5 months after infection of lyme, standart ELISA test is very accurate, and some LLMDs abuse the innacuracy of early phase, during which the tests come almost always negative, to claim that tests are inaccurate.

Hi, my doctor did test me for Lyme, that test came out negative. 

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

Are you doing everything you can to boost your immune system ? Vitamins nutrition etc . I managed ok in August ... not great but I went to a few social events and made it through . Then I crashed again a few weeks ago and yes the fatigue ! My God unbearable ! So I spent $100’s on a virus program. 

I’m doing LOADS of supplements and just started a dose of Valtrex as could not take it anymore . 

I think this ‘thing’ ebbs and flows and you just really need to be patient and ride it out . Baby yourself right now don’t expect a good day and if it comes it’s just a bonus . We are all unique and the time it takes is the time is takes . 

You are not alone in this and it’s not singling you out. I have been fatigued since April just waiting all day to go to bed at 7.30pm or sometimes earlier most nights. I only got diagnosed 2 weeks ago so had no clue what was wrong . I kept doing hard exercise which I’m sure has set me back loads. 

I’ve had about 7 good days in 5 months .

Keep us updated on your progress .. I’m going through exactly the same thing weak depressed tired fed up not sleeping well.... and angry 😖 hang in there youngboy we have to get better this can’t go on forever ! 

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.

Hi Lob, 

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

Yes I had a Lyme test that came back negative also and have not been bit by a tick . So you’ve been tested for Epstein Barr? Because the CFS is a big symptom of that . And according to all my blood results I’m healthy so go figure... unless I would have asked to the test they just would have said ‘nothing wrong with you ‘ 

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

Hey Young Boy,

You're definitely not complaining and have nothing to be sorry for! I know most of the people on the forum empathise having went through similar experiences, just want you to be well again and reassure you that absolutely I don't think this is CFS or Lyme's at all from everything I know about your situation (you did the right thing getting tested for Lyme's and other things but the fact it's negative confirms that's not the issue at all and it is the mono I feel sure).

I believe this is the worst you are going through right now - this is the hardest phase you're in and absolutely hoping, praying and believing it's not going to get worse. Sometimes with this virus it just brings you to your knees and to a real low before things start to get better. It might feel like you're on the valley floor right now but I want to reassure you that I know have said it before but this kind of journey you are in right now, at 7.5 months, is still classic for the way mono goes - it's the post viral recovery phase which can just hit some real lows and feel like it's not going to get better, but it does and it will and it's not going to be CFS - I really really believe that Young Boy - it is truly understandable to be so worried about this and it's such a painful thing to go through thinking these things, but it's not going to be that I have absolute confidence and belief you are going to get better from this and everything that's been going on this past 7.5 months is caused by mono and is going to get better - and that this will be the worst 7.5 months you will have to go through BY FAR. 

Thinking about you and keep the head up Young Boy, I still think you've shown tremendous courage and bravery through this time and you should be proud of yourself for that - and you ARE going to get better, really you are. Keep taking it one day at a time for now and letting God work out the bigger picture.  

Craig

 

 

Hello craig, well Im still struggling. There is a good day or too, or few hours here and there though. 2 weeks ago a moved 1500kms away from home to attend university. I dont know if the activity Im doing is doing harm or good. I try to rest when I can, try not to push myself, but sometimes have to when Im alone here.

Good to hear from you. I think about you sometimes wondering how you are doing. I know it has been a long road for both of us.

And how are you brother in arms?

I am seeing some progress. Still not 100 percent. Starting to sleep a little better. Fatigue is not as bad. Hopefully I will continue to improve. I know you and I were really having it bad about the same time. I thought my life was ending. I am beginning to see some light at the end of the tunnel.

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

Still praying for you,

Thank you Brent, it means everything to me - really need it right now.

Craig