- October '07- I'm an architect & saw ticks crawling on my shirt & pants at a job site. I picked them off & did not remember to check my self when I got home.
- November '07- became very tired. I used to work out 5 days a week & take on larger house projects. I would come home from work & lay on the couch. I forced my self to start working out again & by the end of Nov I thought I pulled a muscle between my right shoulder blade & spine.
- December '07- the tightness in my rear should became much worse & I had shooting pains down my right arm & up my neck. My primary doctor told me to see a chiropractor (I did not)
- Jan'08- I had an upper respitory infection & since my wife was 8 months pregnant my doctor gave me Levaquin & soon learned what a herxheimer reaction was without knowing I had Lyme. I told my doctor what was going on & he had me come in for a blood test. By the end of the month I was diagnosed w/ Lyme & given 2 months of doxycycliene (Feb & Mar '08).
- After the 2 months of doxy my primary doctor stopped the antibx & I went down hill fast w/ fatigue & really bad brain fog. I saw 2 infectious disease doctors & a neurologist all claiming I did not have Lyme- or no longer had Lyme. I had no treatment for 2 months (April & May '08)- I even had a spinal tap when I started having memory loss.
- June'08- I finally found Dr K in Madison CT & she put me on 5 months of biaxin & plaquenil. I had to stop that due to stomach issues I'm now on my third month of doxycycliene.
- September '08- I found a natriopath who does the f-scan & Rife- which I think is getting me better. All my blood test show I only have Lyme- but the Fscan says I have Lyme, Erlichea & Bartonella (I still need to be scanned for babasea & microplasma)
- I no longer have memory loss, no more anxiety, the body aches are not as bad as they were- but are still there sometimes. My biggest issues now are brain fog & fatigue. My energy level is nowhere where it used to be. As far as brainfog goes- it also is no where as bad as it used to be- in the mornings I'm not too bad- but it starts to get worse by mid morning and continues to get worse & peaks around 4-6 PM and then lets off again around 8-9PM. This is really driving me crazy- it is hard to work & the worse part is that I want to enjoy my first child/ new daughter & instead this has happened.
Symptoms
- Does the brain fog ever go 100% away? Does your stamina ever go back to what it was? Or are you basically suffering for the rest of your life: a shell of your former self?
Any help is greatly appreciated!!
Posts: 15 | From Guilford, CT | Registered: Apr 2008
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posted
I have some of the same questions as you do, so not sure I can be helpful.
Although I can say I have been treated now with Doxy from the beginning and going on three months after having undiagnosed Lyme for two plus years.
I have talked to others who HAVE gotten better and told me to hang in there and by summer I should be feeling better.
My energy is actually better already. And the joint aches are better too.
My doc just started me on Azithromycin plus continuing the Doxy and then will probably switch to Flagyl for the cyst form in a few months.
She said we will see if that does it or if there are still symptoms indicating co-infections.
Everybody seems to say that if you have two to three months without symptoms you can stop the treatment and that should do it.
I know I am counting on it and feel for you with a new family, etc. I know people do get better!
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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bettyg
Unregistered
posted
sman, thanks for the detailed post, and CONGRATS DAD!! so sorry to read of all you have been thru.
good news is that you've only had this 1.5 years so progress for YOU should be so much better than mine of 40 years! 35 yrs. misdiagnoseed by 40-50 drs.
i'm currently suffering from MAJOR FATIGUE that i didn't have prior to 20 months of pulsed antibiotics of doxy and biaxin.
then 2 months of 22 supplementals! it was those that really knocked my socks off.
last 6 months have been pure hell; NO energy; but i've been home for 10 years; had to quit work due to my severe health but didn't know it was lyme then.
i wish you the best! others will be along to share their experiences with you.
my brain fog is much better; it comes and goes.
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i' am 5 months into treatment after going 2 years and 3 months undiagnosed. My brain fog follows a similar pattern but is gteting better.
Plese review DR. B's supplement list as he has some suggestions to address this. Don't get down...you will get your life back. Just don't rely 100% on the antiobiotics. I've been follwwoing DR. B's recomedation and seem to be on a pretty good track.
Brain fog is just starting to lift after 4 months...hang in there and congrats.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
The best med thus far for me with my brain fog is diflucan.
I've been on the diflucan protocol for Lyme for over one year.
Major difference in ability to think, remember, speak, etc.
Now stamina is a different issue.
I wake up around 4:30am each day and do fine until about 8:00pm at night.
I hit the great wall.
Sometimes after lunch I do too.
However, I think it is due to my POTs and blood pooling for digestion.
B-12 helps some with energy.
Congrats on the new baby girl.
My first baby was a girl.
Trust me, she will change your life.
Hang in there.
Give yourself time to get well.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
did you get treated for the co-infections......? This can contribute to still having sypmtoms . It's very rare nowadays to get get " Plain" Lyme with no co-infections. You might have been under treated for lyme as well.
You have to treat untill ALL your symptoms are gone and then some.
Re~ The rife. From personal experience it can take up to a year of continious rifing to see real improvement. You can " Hit" a wall with the rife too. Maybe think about exploring new frequency's.
Hope this helps & you can feel better soon
* none of the above is medical advice....just my 2 cents
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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I can completely relate to your frustration. I am an engineer and have had to go on disability because I am no longer able to do complex thinking needed to perform my day-to-day tasks at work. For me the worst part of Lyme is the loss of my ability to think and my personality has been completely altered. I am only 3 months into treatment and have not seen much relief yet. I get worried too that I will never get my brain back but there is plenty of people who have had it a lot worse who have got better. Watching the film "under our skin" gave me a lot of hope that I will be able to beat it with time.
Hang in there and keep us updated
Posts: 92 | From Virginia | Registered: Jan 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
quote: Does the brain fog ever go 100% away? Does your stamina ever go back to what it was? Or are you basically suffering for the rest of your life: a shell of your former self?
Yes. Yes. And No
I too recommend Diflucan for the brain fog. The longer you are on abx, it becomes unavoidable to not be loaded with yeast (candida) systemically. Which will cause your sugar to drop and spike throughout the day. You also might want to start monitoring your blood sugar.
I recall a reading of 43 one time after eating eggs for breakfast... Also can give you that 'drunk' feeling after you eat (because basically your food ferments and you do get drunk).
It could also be your body struggling with ATP production. I found that NADH, taken by putting under your tongue, really helped me through those times.
People do get better, and I'm one of them.
Oh and, welcome to Lymenet!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Yes, my brain fog went away after 20-30 years of lyme. I can now think and speak clearly. I'm still working on 100% physical endurance, but I am up to 80 -90% of my potential on a regular basis, as I am still working on some co-infections.
You might want to have your naturopath look at the following:
Deseret Biologicals Series Remedies for Borrelia and Bartonella. They are powerful medicine, and don't cause problems with the digestive system.
Ergopathics homeopathic lyme test kit for the full variety of co-nfections.
Venex bee venom ointment. It is marketed for lyme arthritis, but it was powerful in correcting my neurological and brain fog symptoms.
Congratulations on your new baby!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I apologize for not reading your entire post - I basically had to stop at the headline - as my energy bunny just stopped cold after landing on this thread.
Instinctively, it came to me to be sure to assess other chronic stealth infections that can cause some of the same symptoms as lyme.
You might need to back up to be sure lyme and other tick-borne infections have been adequately addressed. Still, there are other things beyond that to consider.
Some LLMDs are educated in all this. Some are not. Best of luck.
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