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Posted

UPDATE:  was bit in early June, found out in 10 days, lucky, immediately on meds.  Now seven months later, still major fatigue, brain fog, weak legs, very difficult to work sequential problem like electrical wiring, very hard, even engine startup, etc. 

 

Any one have similar experience. If so, suggestions are always welcome.  Now trying to restart my suburban so I can obviously get it legal and drive it. Once cleaned up a bit, will sell it. Probably this spring. 

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Posted
1 hour ago, pflaming said:

UPDATE:  was bit in early June, found out in 10 days, lucky, immediately on meds.  Now seven months later, still major fatigue, brain fog, weak legs, very difficult to work sequential problem like electrical wiring, very hard, even engine startup, etc. 

 

Any one have similar experience. If so, suggestions are always welcome.  Now trying to restart my suburban so I can obviously get it legal and drive it. Once cleaned up a bit, will sell it. Probably this spring. 

 

Sorry to hear that..frigging awful disease.  Hoping you get better. 

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Posted

Sorry to hear this Paul. I think all we can do is keep on fighting one day at a time.

Life is always one battle after another. I can only hope I am still in battle at 80 years old like you are.

 

I have no suggestions to offer. Just keep swinging.

 

I think we have the same symptoms for different reasons. Took me 3 or 4 days to get the engine out of my wife car .... then a solid 5 days sitting to recover from fatigue.

I then got the engine & trans separated and trans sitting on blocks so can move/rotate & connect to new engine.  Then it took 2 days sitting to recover.

Then I took the wife grocery shopping to walmart ... that takes a day to recover.

I understand the fatigue .

 

I use to love reading, old Zane grey novels ... My 85 year old Uncle had them all.

Today I cant read a repair manual. Read a paragraph 6 times and cant comprehend what is said. Eventually I figure it out. 

Doctors gave me a drug that works for others ok, certainly messed me up.

 

I had a major win today, I needed to remove a intake manifold & extract a busted bolt. Had to drill it out, and it went perfect.

Weather will be cold tomorrow so I forced myself to work on it today. I will need a few days to recover from fatigue so works out fine.

 

Paul all we can do is jump in the ring and keep swinging.

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Posted

Los, have you been tested for lyme infection?  It is a very elusive infection. I certainly wish you get control as well. I am told I just have to wait it out for now, maybe a year plus. I can function, just not very fast nor very long. The upside for me is that i have very little discomfort, some muscle aches at times. Nothing sustained.  Maybe I have just lived too long. 

Posted

What an awful situation, Paul. I can’t imagine the struggle . . .
 

What was the first symptom?

 

Is there a simple blood test to find out if one had this?

 

I heard this can sometimes be with you a long time before it is noticed.

 

 

Posted

The longer Lyme goes untreated, the worse its effects. I went to urgent care for a cortisone shot in my knee, the nurse saw a red rash on my arm and automatically treated me for possible lyme. When we got home we found the bulls eyed mark on my shoulder.  Lyme longevity is unknown, it can reappear years after first infection is ‘overcome’.  Not good!

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Posted (edited)

lyme is problematic. but any tick bite can generate a bulls-eye, yet not all bites lead to a bulls-eye.

 

i've been dealing with lyme symptoms since 1989 or 1990.  didn't figure it out until about 5 years ago, when i read that some tick bites are associated with temporary appetite loss.  CLICK!  remembered losing my appetite for about 5 months back in college (with a heavy deer population along with deer ticks and lyme).  didn't know anything about lyme back then.  i've had just about all of the other symptoms generally associated with lyme in the interim 30 plus years, at different times (joint/muscle ache, bell's palsy, twitches, fatigue, appetite loss, difficulty sleeping, difficulty staying awake).  some have remained, some have disappeared, some show up from time to time.  for me, it has been an improvement just knowing that that's what my problem has been, and i can deal with that.  i did change my diet a bit, focusing on anti-inflamatory and high anti-oxidant foods.  that has helped.  still have bad days, but not nearly as many bad days as i had in my 20s and 30s (i'm 53 now).

Edited by wallytoo
Posted

Have you taken Doxycycline? A doctor in Maine put me on that. Two pills for 28 days. My basic issues now are fatigue, when it hits I’m finished, nap time,  Difficulty doing complicated tasks such as electrical wiring, and problem solving, weak leges and balance. I’m only 7 months into the infection and hopeful that i may come out at 90 % by summer, but there are no quarantines on that.

 

Thanks for sharing, let’s keep in touch. 

Paul 

Posted (edited)

Have you heard of Alpha Gal?

It is a condition, often brought on by tick bites, that makes a person become allergic to red meat and generally all mammal products (dairy, gelatin, things like suger that are processed with charcoal made from bone)

It is very hard to diagnose because the reaction is offset by 4-12 hours. Only allergy to do that, and many Dr.s have never heard of it, so won't test for it. Blood test is only moderately accurate.

Each type of mammal has its own variant of protein, so not everyone is sensitive to every type of meat

Easiest way to test: document all the food you eat for a few days. Try to avoid all mammal products. Look for products labeled Vegan, then add chicken or fish to them. Do you feel better? If you accidentally, or on purpose, eat some red meat, see if the next day you have an episode.

 

I struggled with this starting in 2013. It took me a year in a half to figure out what was wrong with me. Got so bad my wife wouldn't let me drive- I would nod off so randomly. Dr. said I needed to get more sleep, everything was fine. I was 28, sleeping 10+ hours and drinking 2 pots of coffee a day, and still taking 1 or 2 naps. I had lost 50#, and most of my friends though I was dying.

 

We are a strict diet until mid 2020, when I found and tried a treatment for it that worked. To well, you may say, as I put back on that 50#.

SAAT or Solomon's treatment.

https://alternativemedicinecenter.info/soliman-auricular-allergy-treatment-saat/

Perhaps you can find someone in your region that is certified to do it.

Good luck, message me if you have any questions

Edited by FarmerJon
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Posted
6 hours ago, pflaming said:

Have you taken Doxycycline? A doctor in Maine put me on that. Two pills for 28 days. My basic issues now are fatigue, when it hits I’m finished, nap time,  Difficulty doing complicated tasks such as electrical wiring, and problem solving, weak leges and balance. I’m only 7 months into the infection and hopeful that i may come out at 90 % by summer, but there are no quarantines on that.

 

Thanks for sharing, let’s keep in touch. 

Paul 

 

no medication, since the infection was over 30 years ago.  doxy is effective for most patients if treated in early stages of lyme, rather than in chronic cases.

Posted

Dousing oneself with insect repellent is status guo up here once the permafrost is out, and you plan to go outside.  (I guess technically not permafrost, since it goes away, but that's what everyone calls it up here.)  That's when all the biting bugs and ticks come out to play.  Ticks aren't so bad in northern Maine yet, but they can get bad enough to kill moose calves downstate.   

Posted

the ticks that kill moose are winter ticks, different from deer ticks (lyme) and dog/wood ticks (a host of nastys).  as far as i know, winter ticks don't feed on us yet, although that could change.  they absolutely hammer the moose - the blood loss causes anemia among other issues (up to 40K ticks on a moose).

 

i've been wearing permethrin bonded clothing now for about 10 or 12 years.  works pretty well - instead of finding 30 to 40 ticks per day on me, i find 1 to 5.  vigilance every night checking for ticks before i go to bed is the key to preventing imbedded ticks.

Posted

Yep, the tick check when you get back from the woods is very important in these parts.  The main problem with deer ticks is that they're really small and hard to find.  Here in Maine, if you pull an imbedded tick off, you can send it in to the State to be identified and tested for Lyme.  I think the tick has to be attached for at least 48 hours to transfer the disease.  If you do it quick enough, they can identify it in the tick before any symptoms appear in the person, and treatment is much more effective.  Escapes me right now just which department you send it to, but it's easy to look up. 

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