been a while since i've posted...wish i could say i am well. Yes i am functioning and continue to work... a minor miracle given i work in NYC in financial services...between mergers, layoffs and lyme not sure how i am in one piece.
But i continue to hang on looking for the day that i get past surviving and feel well enough to see my future as more than getting through tomorrow....not trying to be melodramatic just factual.
With all the time gone by(6+ years sick, 4.5 in treatemnt) i have no doubt made some great strides but 2012 was a lost year for me...no progress due to stress i believe.
anyway for those that have been sick for along time curious if you find that you are lost...especially when you feel the same way almots everyday...
i know i am toxic and have stepped things up but i also beleive my HTP is messed up ...i get nervous, hypoglycemic surges almost same time each day. they are life draining....also still have a little depersonalization with time and timelines....energy and stamina are garbage.
so there area million things i could try...and about to start armor thyroid.
anyway curious how others constructively reset your approach...esp. when you are so damn tired....
ps..started hot yoga recently and it really helped until plaquenil was thrown in the mix and now feel real crappy again.
but again how do you take stcok of where you are ?
any help is appreciated....
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hey Dave, Have you tested or treated for coninfections? Didn't see any babesia or bart treatment in here.
I have the same problem as you as far as taking stock, yes. I find that my hope hasn't died but life is very hard sometimes. I don't understand why there has been so little success with treatment.
Posts: 3528 | From US | Registered: Apr 2007
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Dave,
Who is treating you? An ILADS doctor? Your treatment seems weird to me. What did you take for cyst busting? You bounced around a lot with meds.
Was there ever a time you had all 3 forms of the spirochete being targeted?
We added on plaquenil when we plateaued.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi Dave,
Just thought I would chime in here. There is a new view from the recent ILADS conference.
That is they are now confirming that parasites/worms are the number 1 co-infection of Lyme. Google parasite symptoms and see if you can relate.
There is a current thread PARASITE WARRIORS SUPPORT THREAD Many here are finding through antiparasitics that they have this co-infection. It could be the missing link for you. Check it out. It could change your life.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's tough trying to hang in there all of the years. This illness is very complicated. Some people are able to find the thing they need to get well & go forward & others don't.
The worst thing is that there doesn't seem to be accurate testing - so, we don't really know what is making us ill.
It seems that your worse issues are more psychological. Have you tried meditation? I know it sounds New Age-y but it does help brain function. The CDs from Dr. Jeffrey Thompson or Hemi-sync work really well & are very easy to use.
Parasites are always good to treat so you can rule them out. It's probably good to treat them as an ongoing basis.
I think iodine is helpful for thyroid if you don't have a really bad issue with it. I use a product called Nascent Iodine (Magnascent is the brand). Some people use Lugols.
Exercise is very useful if you can manage it. The weather was better when I lived in the south & I use to make a point to walk alot & go swimming. I felt better from doing that. It's hard to do that up here since the weather is crappy. I do try to bundle up when it's cold & get outside for a bit.
Yoga may be good but it was too much stretching for me. I like chi gung better.
I got tired of taking abx & I felt they were making me ill in other ways besides having Lyme or whatever it is. Some people think you have to keep going in that direction but it doesn't always work for everyone. It gets to a point where you have to just try to keep going from where you are.
I don't know the answer. Do what you can to improve yourself as best as you can. Don't give up hope but you can't always be fighting. Sometimes, you have to regroup to keep going forward. Many of us may have to live with this illness as best as we can.
I don't think of it as giving up - but we have to try new ways to deal with it. I like things that are less invasive that you can take for a long time. I don't like to take the drugs if i don't absolutely have to. They don't always work in any case.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Thanks for the input... to answer a few of the questions.
- my doctor is an ILADS doctor and one of the best in NJ. She and her family all have/had chronic Lyme(some of you will figure out who she is). I love her...adn i have gotten better under her care..she knows what she is doing and we have tried many things.
- just added Plaquenil - Treated parasites...but maybe not long enough - Psychological is a a factor...been to see Dr B in NJ...and it has helped...anti-depressnats have their place but they create some new problems...i am off them for now. The overriding issue throught my illness has been that we were a single income family relying on me to pay bills and now get kids through college...i need 2 more years before i can take a timeout without creating a financial disaster. The stress of that situation including what i do for a living(technical, customer facing,) create stress everyday...i swear i should have a medal on my chest for making it this far. - i agree on excercise...and had a great program for 2 years until i injured myself....just started Hot Yoga.
- tried going off treatment just to do a clean up 6 months agao...things started creeping back after 6-8 weeks...and i am clawing my way back to my previous baseline.
- co-infections...never tested positive...but still not convinced i don't have bartonella...i muscle tested positive for it.
- Maybe Plaquenil will get me off this platueu...but its probaly what started this thread becasue i just added it 2 weeks and started feeling squirrelly... mental herx?
sorry for so much info...but who else in my life would understand any of this?
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Dave,
A lot of it sounds like adrenal fatigue? You'll know for sure when you start the Armour Thyroid.
Looking at your meds, it looks like you did treat for bart with doxy and rifampin. Followed by bactrim.
Possible that a fluoroquinolone was needed. If it were me, I'd think more along the lines of the adrenals and/or thyroid first.
I, however, wouldn't start with a high dose of Armour T.. I crashed on one 15mg pill. I was supposed to increase by one pill each week but couldn't.
When adding the second pill, that was it. Totally weak, freezing cold, my bedroom slippers were "too heavy" for my feet, could barely lift my hands up.
It wore off quickly but my doc said with that reaction, it's a definite diagnosis of glucocorticoid deficiency and put me on hydrocortisone.
Good luck. I hope you find your answer soon as I do for all of us. Hugs and prayers.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Thanks Pocono....starting the Armour T on Saturday just to be safe....
ps...where in the Poconos? we have a house in Hemlock Farms..i was bitten at Pecks Pond.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
sorry for whats going on...it is cortef that helps adrenals tho...armour for thyroid...unless fixing thyroid affects adremnals...i need both at very low dose to stay right
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Dave,
Northern Poconos. I know where Peck's Pond is. When I was able to work, I took rte 84 from Hamlin to Milford.
I have a friend who lives in Hemlock Farms. I'm about 40 minutes from Hemlock give or take.
My husband takes 84 to Maybrook NY every day to work. Not bad when the weather is good but wicked in the winter.
Hemlock is really big. That whole area is so beautiful. I guess that's why it's called Lords Valley.
lpkayak, You are correct. Cortef/Hydrocortisone is to fix the adrenals. Actually replaces what our adrenals aren't producing.
If your adrenals aren't functioning properly and you start thyroid meds, it decreases your levels even further and you crash.
I would imagine if your adrenals are mildly fatigued, one wouldn't crash. That I don't know.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
In some cases, adrenal dysfunction may possibly be caused by hypothyroidism. And therefore, in some people, adrenal dysfunction may be secondary to hypothyroidism.
Paul Robinson, developed a method of administiring a T3 containing thyroid medication that corrected his hypothyroidism and his adrenal fatigue and other people with hypothyroidism and adrenal fatigue have also reported similar benefits from his circadian T3 protocol.
You can read more about this protocol on the links down bellow.
There is a yahoo group that is made up of people using the Circadian T3 method to correct "adrenal fatigue" by taking a T3 containing thyroid medication on a unique dosing schedule.
Paul Robinson found that your thyroid hormone production and cortisol production followed a circadian rhythm. And he also found that you can often correct adrenal insufficiency and cortisol production when you give a T3 containing thyroid medication in a way that is in tune with your body's natural circadian rhythm.
So, adrenal hormone production can apparently be effected by the health of your thyroid gland. And at least in some cases, correcting hypothyroidism can cause your adrenal gland function to return to normal.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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posted
Thanks very much....i'll take some time to review this tonight.
more and more people are doing that commute...my love of that area overrides my fear of ticks....i somewhat solved that issue by buying a samll boat...no more fishing on the side of ponds with tall grass...
Dave
one quick question though is if i start taking the armor thyroid on saturday should i expect anything noticable that day?
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i didnt...it took awhile for me. and if i stop it ... it takes a while for bad stuff to happen. my doc was ocd about testing to get my numbers right...he didnt worry about how i felt from day to day-just keeping numbers right
but i do know some ppl have thyroid problems that are very sensitive to changes
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
okay thanks....if its like anything else i can assure you i will have side effects....its almost laughable....i am so due for something positive....although i juts found hot yoga and wow talk about a power detox!!
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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