Lyme disease concerns

Hey everyone. I made enough progress to experience real change but I understand I have a ways to go. My paranoia about my health is becoming worse as the cognitive impairment decreases as I reduce these drugs, in particular the gabapentin. I made a drop recently, and my nAChRs were firing like crazy, like they do every time I make a drop, and I doctor googled myself with lyme concerns and noticed I may be exhibiting symptoms similar to the poor bastard in the animation in this link.

 

https://www.cdc.gov/lyme/signs_symptoms/index.html

 

So, I'm afraid I have some degree of facial palsy symptoms. To make matters more confusing, when I recently renewed my drivers license and took a new picture, they told me to smile and I forced one and I basically look like I'm having a stroke. My eye looked slightly droopy and my mouth was slightly crooked. I went to my PCP yesterday and told him and he laughed at the way I explained things because I'm an amusing character I guess but I'm trying to be serious. My right knee also hurts but isn't swollen. I blamed that on breaking my 5th phalanx because it is weak and hurts so it made sense it is causing the knee pain. Showed my knee to my PCP and he said it isn't swollen, and it isn't but still hurts a little when I walk on it. He did this exam where he checked me for facial palsy and said I didn't have it. I had to squint or close my eyes really hard and blow up or puff up my cheeks. Not sure about all that. I keep taking pictures of my self with my cell phone to see if my eyes look even. They pretty much do. But I don't know because they don't look completely perfect or even at times but I'm pretty paranoid, I'm tapering, I use edible cannabis with lots of THC in it. I use CBD as well though which balances me out. I don't want to sit here and rant about my current drug use but it is affecting my judgement obviously.

Basically, I think I need to find a new PCP because he isn't paranoid enough about my health. He just thinks I'm a healthy guy. He keeps telling me I'm handsome and should move on with my life and get married. Then I get distracted about compliments, finding a girlfriend, and HOCD at the same time wondering if my PCP is hitting on me. This is what my WD is like. So, I don't know what to do about this Lyme shit or my sexual hangups apparently. I feel like I need to go see a neurologist anyways and have been putting it off. Just need to get examined.

When I got bit by a tic a few years ago, while on benzos, opioids, gaba analogues, and I can't remember what else, comfortable wrecked  I didn't notice anything. No rash, no flu that I can remember. It's all a blur though. My drivers license photo looks like I may of had a stroke or a brain tumor. It's like my facial muscles are weak and throbbing in pain. I hope I don't have Lyme disease or something worse.

I’m sorry you are experiencing this, Mamoot.

Lyme is scary and unrecognized by a lot of doctors, but it is becoming more prevalent every year, so it is actually getting easier to find doctors who know what tests to order and are willing to treat.

 

You don’t need to ditch your primary doctor yet, (unless you have other reasons to move on.)  You can get another opinion from a Lyme literate doctor and make your decision then - a second opinion.

 

But if your current doctor is supportive of your taper and otherwise attentive to your needs, don’t let the Lyme fear wreck your relationship.

 

This site may assist you in finding someone near you.  You have to register, but it’s free to access the physician tool. 

- You could also google “Lyme Literate doctor” & see what turns up

- Not all who are open to the Lyme thing are formally registered as “Lyme Literate” so it’s also helpful to ask around ... you’d be surprised how many folks know someone who struggled with a Lyme diagnosis.

 

Seeing the neurologist is a good idea.

I hope you get some answers, (and that you feel better.)

Thanks for the reply. Not sure if I have Lyme. I do have achy joints...in my knee, hip and elbow but no swelling. My eye does look occasionally like I'm squinting or just something up with it...not sure because I look okay I guess. I do have some muscle aches and stiffness in my face though. Considering the drugs I'm tapering currently I just figured the symptoms would be more intense but I don't want to think just because I'm doing better than others with Lyme symptomatically that I don't have this insidious illness. I do alot to stay healthy, well beyond average I think but I slip up with diet because I hang out with a friend who likes to eat....a fat guy basically. It seems I always come over on his cheat day too and we eat alot and it sets me back days. I need to stay strong and just eat smaller portions I guess when I go out. Sometimes I just want to throw up if I eat too much but I don't want to make things worse.

 

I need to figure out how to diagnose Lyme and all the other co infectious shit but it seems like I need to go to a rip off clinic and it will cost thousands of dollars. I feel like it's a scam too and I will get a false positive result or maybe a false negative. I don't think Lyme disease is a scam but I get concerned looking at these naturopathic bullshit sites because they seem all about the money which makes me so angry I want to smash something.

 

Are antibiotics the way to go? Seems like another approach is to fix your gut health and let your body coexist with this disease or possibly cure it.

I'm thinking about going on a crock pot diet, using bone broth, meat and vegetables and also fermented foods like sauerkraut to heal this or at least keep it at bay until I figure something out. Also, coenzyme q 10, vitamin d3, fish oil and some mushroom extracts to boost immunity. Worrying about diseases motivates me to eat right at least.

 

Edit: I looked at that link and signed up for free and used the physician directory and I think I may of found an infectious disease doctor who takes my insurance at northwestern hospital. Just need to call and find out. But I'll probably need a referral and I have to see my PCP again. Need to convince him that I need to get checked out somehow.

Being mindful of your diet, getting enough sleep, exercise ... are all good things for you - remarkable how basic these things are, and yet we generally do not do enough of any them.  Our immune systems would all be stronger if we managed these basics better throughout our lives.

 

You do want to be careful about the supplements though.  Some folks find that they cause other problems, making their tapers more difficult.  If you want to go that route, start them one at a time, until you know that you tolerate them.

 

Antibiotics aren't the way to go unless you've got a doctor who supports a Lyme diagnosis.  (You shouldn't take them without a prescription.)

 

I know that acute Lyme is easily treated with doxycycline, if you catch it early enough.  Chronic Lyme, which is difficult to diagnose, may also treated with antibiotics, but it's a different mixture & length of treatment. 

 

My benzo story started with Lyme.  I had a documented acute case and received the conventional, (at that time), three weeks of doxycycline.  It cleared partially, enough to turn all my tests negative, but my health continued to deteriorate in subtle, and not-so-subtle, ways.  I was seen by many specialists - a rheumatologist discovered that I had titers for mono & fifths disease that timed for when I had the acute Lyme, so there was speculation (later on) that I was just too compromised to fight off the Lyme with only three weeks...

 

Anyway, I found a Lyme doc (infectious disease specialist, who had a research interest in tick-borne illnesses), who isolated part of the Lyme spirochete in my labs. (I think it was spinal fluid, but now I'm questioning my memory - might have been a blood sample...)  He was really into research as well, and didn't do conventional labs...  Anyway, it was a very unusual discovery & he treated me aggressively with antibiotics - and I got better.  That doctor gave me my life back.

 

Admittedly, Lyme is a trigger issue for me - it took nearly 10 years of my life, getting sicker & sicker, being called crazy and feeling like I was dying.  For me, Lyme was worse than my benzo taper, (but also admittedly, my taper was much smoother than many folks here.)

 

Regarding the quackery, yes, I do think this exists.  I think this industry happened because people were suffering and had expired conventional medical routes.  Desperate people will often try anything and unfortunately, there are always people looking to fill that void if a buck can be made ...

 

It is prudent to check reviews and complaints filed against the practioners.  Complaints/reprimands filed with the medical board are public domain, (I think - but definitely if their license has been revoked.) Also, if a physician has an affiliation with a hospital that has Lyme research happening, I think that's a good indicator of using science vs voodoo.

 

I hope you do not have Lyme & that you find someone who can help you. In the meantime, taking care of the things you can control are good things to do.

 

Wishing you the best...

JB

Edit: I looked at that link and signed up for free and used the physician directory and I think I may of found an infectious disease doctor who takes my insurance at northwestern hospital. Just need to call and find out. But I'll probably need a referral and I have to see my PCP again. Need to convince him that I need to get checked out somehow.

 

That's a great start. I hope you find some answers.

Thank you. I did make an appointment with that doctor on Dec. 20th. Not sure if I need a referral from my PCP but I see him again on Dec. 10th so I'll get in to see this doctor. Thing is I'm not sure how bad Lyme symptoms are but I seem to have achy joints. Like every time I try to do pull ups now my elbow hurts. My knee hurts, which may be because of my broken toe from a year ago which still hurts. My hip as well. Then the stuff with my eyes. I'm not really that fatigued though. No swelling anywhere either. I usually feel okay. I've taken so many supplements and experimental stuff since my tick exposure that I may have accidentally helped keep it in control. I took cephalexin, an AB for a week sometime after the exposure I think but my memory is fuzzy. Cephalexin doesn't treat Lyme though but something is better than nothing. If I truly had Lyme I think I would know considering how severe the symptoms are people describe. I never experienced extreme fatigue while tapering either but I always make sure I get enough sleep, eat right and stay on top of things. If I slept poorly and ate fast food I would be in bad shape quick though. Lyme disease is something I need to check off my list for sure. All I know is a tick bit me and it was on me  long enough to get swollen. Based on the size of the tick it could of been feeding on me, 12-18 hours would be my best guess but it is difficult to remember. I always had a strong immune system. I haven't had one fever or cold in over 5 years since this all happened. It's gotten to the point where I get paranoid that my immune system just doesn't respond to viruses and that I actually may be getting colds or flu viruses with no symptoms. My body temperature seems in the low range as well. I just don't understand why I don't feel worse. Maybe I'm doing something right and I'm managing some how. So confusing.

Not sure what is going on with me but I started eating a special ketogenic type diet and I feel miraculously better after only a few days, as far as mental clarity. I still have an intense keto flu due to some insulin resistance which effects the rate that tryptophan is converted into serotonin. This keto flu transition stage will smooth out quicker than the last time I tried keto because my body has gone through it before. This is my second time trying keto. I was unsuccessful last time due to severe cognitive impairment from high dosages of gabapentin and other issues. This drug has been a problem for me, causing me to be confused about ketogenic diet information because I wanted to know everything and I basically just got anxious over it and came up with excuses not to do it. Like thinking it will lower my serotonin levels since insulin is needed to drive its release but I think I'm overthinking this too much. Once you become fat adapted and cure insulin resistance the body should do fine at making serotonin. Balancing the gut microbiome is an issue too. Since some starchy foods are required to increase the diversity of these microflora introducing these foods back into the diet occasionally may be necessary. Also, from what I recently learned, if you have candida you probably have an overgrowth of all sorts of bacteria. Eliminating foods like carbs and sugars and also fermented vegetables and maybe even onions and garlic short term will dramatically shrink this overgrowth. Then after 4 weeks reintroduce foods back in and rebuild the microbiome. This may be one way of doing it. I still am hooked on onions and garlic though. Switching to keto is hard enough in the beginning so I'm just trying to make the switch as comfortably as I can. I was able to go to the gym today and use the sauna, and have the clarity to know when to come out. I even meditated and did a body scan with the calm app after I got out of the sauna to see how I felt. Since switching to keto my brain seems to cope better with neurological symptoms from heat stress from WD symptoms, which mirror some symptoms of Lyme and MS. Very scary stuff. So, after the sauna in a deep keto flu, I had the clarity to go and try out the elliptical machine and do a very light 14 minute, 1 mile work out. It seemed to release some glycogen from my muscles because I felt better than I've felt in a really long time after words. The inflammation has improved dramatically in my knee as well since I took out the carbs. I got really motivated from Tyson Fury. I watched some youtube videos of his recent struggles with mental health problems and addiction. He came back like a fairy tale and turns his life around on a ketogenic diet to train and fight in that recent bout for heavy weight world champion against Deontay Wilder. He basically won that fight but it ended in a draw because he got knocked down, but he got up at the end of the 12th round. I know my situation is different but he was drinking himself into oblivion and doing a bunch of cocaine. How the fuck can he train and come back and do all these things. It has to be the ketogenic diet. It has to be the way out of this.