Topic: which co causes constant 6 year headache/myalgias
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
My son is currently being treated for babs since nothing in the past three years has budged the headache, myalgias and TMJ. He has done 4 months of mep/zith and art. While on this he has had an increase in his OCD and for the first time some creepy crawly symptoms.
The thought is to switch him to treatment for bart but I am worried he is getting off babs treatment too soon. (I know Dr. K. says bart can be treated last if this is indeed bart surfacing.)
Has anyone had headaches and myalgias with bart. I am inclined from reading to think the headache and myalgias are babs and this is why IV and IM bicillin did nothing for budging his symptoms.....not even the arthritis.....because babs needs to be treated.
I would appreciate any suggestions before our September appointment when the plan is to go on levaquin and something else.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Hi J, Thought I would respond here - have been meaning to PM you.
My son has the constant headache, too, which only went away for a while when he was initially treated five years ago...then relapsed a few months later. He's going on 5 years (this Nov.) of the constant pain.
I wish I knew which TBD was causing this - I'm leaning toward Bart right now, but thinking, too, it could be Lyme. Initially, the HA improved after IV Rocephin and doxy...at the time we didn't realize that he had Bart, which was later confirmed by PCR. We suspect that he's had Babs and he's been treated - but not for long -he wasn't able to tolerate Mepron for more that about 3-4 weeks and later Malarone for about the same...too much herxing and weight loss/nausea to continue.
I've been wondering if Babs was the HA culprit and that we just haven't been able to treat it long enough. He was treated with Artemisinin for about six months and tolerated that and even improved - along with Bicillin, Septra and Plaq. He had significant improvement on that regimen with chronic fatigue and myalgias - but no improvement in the headache pain.
Our doc wants to try levaquin at some point, too, and we're talking to him later today. He was hesitant b/c my son is only 16 and I guess it's not used often with kids - but he's nearly adult at this point.
So....after all that, I wish I had an answer, but hope that others might have ideas. It's just so incredibly frustrating to deal with this long term chronic pain...very discouraging for the patients and the caregivers.
Take care, Nancy
Posts: 688 | From Florida | Registered: Aug 2001
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posted
My experience has been that when my yeast load is up, I have worse headaches.
Just a thought.
Bug
-------------------- Every experience God gives us, every person He puts in our lives, is the perfect preparation for a future only He can see....Corrie Ten Boom Posts: 343 | From Northcentral Iowa | Registered: May 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Valy
Dose your son have any symptoms of bart? discribe any skin rash ect-photo-
For me Babs caused about 80% of my symptoms-
On some people the good results from treatment can be slow and take a long time--
I had been treated for Lyme for about 15 months(doxy 600mg aday) BEFORE babs treatment was Added--
My responce to the Babs treatment was fast--I could feel some good results in 3 days--
After about 6 weeks of babs treatment the migranes have stopped compleatly-AAhhh So I am Sure that the Babs was causing them-
Skin crawlies stopped in 6to 8 weeks also-- the crawlies were horriable-
Joint pain took longer to get better- about 6 months to mostly pain free--AAhhh
Stiff neck-95% gone 6-months --
Night sweats took 2 months to get better- now mostly gone --AAhhhh
Crazy heart stuff took about 2 months to start getting better-- now 12 months- mostly gone--
Babs is a Very Tuff bug-- progress can be real slow --sometimes faster tho-
Some things I have found in treating babs--
Take Mepron with Real Greasy Food-- animal fat seems to be best-Bacon-hamberger-
I can deffinatily feel the difference when I take mepron this way--
Artemisinin is Very important-- take it dayily-- Google - WHO Artemisinin--
Make sure to take meds on time- dont miss any doses---Ever--
Drink lots of water --very important--
At the moment I am feeling Perty Good- Mostly symptom free -but I am still Real tired -but this is getting better also--
Meds I have used to Treat Babs -- in usage order-
Mepron - 5 bottles-- 1tsp x2 Mepron was Very Effective for me-- Hard to get the $$
Bactrim DS 3 to 6 spread threw day-- ( Bactrim is Very Effective on babs and Much cheaper than Mepron )
Artemisinin- 300 to 1200mg spread threw day-
Tonic Water--amazingly it Really helps -I drink 1 to 2 liters a day-- It has Quinine in it --
I get Diet tonic water - no carbs-
Eat Good Low carb diet--
Get lots of Rest--
Drink tons of water-tea---Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Nancy.....bug.....groovy
It's so frustrating! Thank you for your responses.
I question: would the headache be gone if he was yeast/free???
He has stayed off alcohol all these years but he can't stay away from carbs. Two years ago he had all of these symptoms and after his holistic chiro ART tested him he put him on a no carb diet for three months. My son did not feel any symptom difference so now when diet gets mentioned.....he doesn't believe it can make any difference.
I think he needs to have a Dr. K-like ART practitioner lead us to the correct herbs and supplements and abx......and exercise.
I think yeast will show up as a real problem, groovy. I do like the bactrim idea for treating babs.
Also he has lost so many pounds since starting the mepron in April. I keep thinking this could be babs related since it was his brother's first babs symptom (anorexia-like).....but I am just guessing at all of this and wish for certainty.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
I wish too that there was an answer for the headaches, We have tried so much and my 16 year old suffers from them daily! We are almost at a year of a solid headache with no end in sight!
Let me know if you find something that works!
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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posted
Just a thought, but have any of you been tested or treated for hypercoagulation. Hubby has some problems with headaches and eye pain -- the thing that works the best for him is IV Heparin. I do think his headaches are from babesia.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I have a very high bart titre and am just starting to treat it now. Headaches have NOT been a large part of my symptom profile, but I do get them occassionally.
I also have babs and have not yet treated it successfully. bart and babs both can make someone unable to get to health. I dont know that it matters which you tackle first. My LLMDs daughter treated babs with no luck, then treated bart and went back to babs and the treatment worked.
go figure, good luck.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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kelmo
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Member # 8797
posted
This disease is so wierd. My daughter has only tested positive for bart and her symptoms started with migraines, that eventually led to OCD/depression/anxiety.
She has to wear a night guard due to heavy jaw activity and TMJ. She's worn through one and we are trying to save up for another.
Those are my observations.
Posts: 2903 | From AZ | Registered: Feb 2006
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
For what its worth, I had 2+ years of oral antibiotics for Lyme with no improvement on headaches.
Then, after a couple of months of weekly Bicillin IM injections, headaches practically gone.
Was on Bicillin about 9 months.
Off Bicillin and all antibiotics about two months and the same awful headaches returned.
Since then, have had positive lab tests for Babs WA-1 and both types of Bart. (LLMD said that the Bart tests can cross react with one another so I may just have one type of Bart.)
Now on Mepron. Adding Zith on Monday. Then, in another week (after I see how I tolerate Zith) the Artemisinin.
But--headaches went away with Bicillin. So, are they mostly headaches from Lyme? Or maybe something in the Bicillin got at the Bart?
Who knows.
Currently taking Zonegran 100 mgs at night as a preventative for the headaches. I'll get those headaches every couple of days. Horrid ones that last a couple of days. So a typical week, I've got maybe one day with my head out of the pillow.
Anyway, Zonegran is just a temp fix, but it is giving me some relief for now. At least until I get abx meds built back up in my system.
posted
My 10 year old daughter has been getting bad headache since taking omniceff and mepron. Can children take artemisinin and if I put it in her food does it taste bad? She can't swallow any thing. Thanks!
Posts: 82 | From east hampton ny | Registered: Jun 2006
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valymemom
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Member # 7076
posted
Thank you everyone. Each response can lead to piecing together the puzzle.
Dr. B. really thought the 6 months of IM bicillin would help but it did not change anything. Once my son started the babs treatment, though, (finally) his body has responded more - with a worsening of the pulling pains and.... like I said.... the weight drop.....and now the creepies and increased OCD.
I wish I had an answer for you, lemonade, regarding the artemisinin. Ask the question by starting another thread. It hurts so to see new/more pain in our children. If only we were certain it was a positive response and not a side-effect.
I have wondered, bea, about hypercoagulation, and am gathering all my questions to send to Dr. B. before my son's last appointment with him in late September.
And who knows maybe bart is a culprit, also. My son has never tested positive for anything except he had two signifigant Igenex lyme bands back in 2003.
I watch my sons present robbed daily and I worry that they will not enjoy the normalcy of steering their futures, either.
These posts/your voices help tremendously.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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