yes, my son has been treated by LLMD since 12/09, when diagnosed...highly recommended LLMD, but he still got worse, been with new LLMD since August but still no better. He has never been hospitalized and is on all recommended treatment from what I read everywhere. I also have him on Dr. B's supplements. Back to doc tomorrow, we'll see. All I can say is we are following docs orders and will NEVER give up. I have read that its not unusual to be sick a year before feeling better so I hope thats the case and he'll start getting better soon. thanks, GOD bless
Posts: 158 | From NJ | Registered: Jul 2010
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posted
what were his symptoms when he started treatment, and what are they now?
Posts: 339 | From Outer Space | Registered: Aug 2009
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I was definitely worse after my first year...turned the corner around 18 months on abx. I'm off all meds now and doing well!
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
When he was first diagnosed his symptoms weren't nearly as bad, basically just acting strange, bad temper (he was never like that before) then it just progressed to doing things completely out of character: listening to rap music, showering 3x daily, highlighting his bible with different colors markers, not sleeping; and unfortunately just down hill; developed OCD like symptoms; washing hands constantly, checking light switches..now he basically just sits and stares at TV (whether on or not) doesn't speak except for occasionally 1 liners, mostly "it's good" and "don't know". I don't think he's gotten worse for a couple of months, I think he's kind of hit a wall. Oh, he does laugh uncontrollably thru-out the day. More so since he's been on the doxy. No one seems to know why. Well I do want to thank BethS, hopefully my son will start to make noticeably changes now.
Posts: 158 | From NJ | Registered: Jul 2010
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posted
Sometimes when the symptoms of one germ are hit with meds, the symptoms of another (either suspected or unsuspected) then become prominent. I really don't know if this is your son's situation.
For instance, if he has been treated all this time for lyme, maybe what is now most active is bartonella, which can cause psych symptoms. Any possibility he has bart too?
But then again, it might just take more time and getting rid of the debris caused by treatment.
Posts: 8430 | From Not available | Registered: Oct 2000
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he has been tested for all coinfections and he only tested positive for RMSF..but we go to the docs tomorrow and i am going to ask if maybe we need another test or treat for it anyway because it sounds like he has it even though he tested OK. Honestly I just don't know what to do/say/ask for anymore, its been a terrible year.
Posts: 158 | From NJ | Registered: Jul 2010
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posted
So he was not treated for bart because he was negative? I have heard that you can't rely on bart testing anymore than lyme testing. They are continually finding new species/strains of bart and they are not all covered by the tests. Where was the coinfection testing done?
Posts: 8430 | From Not available | Registered: Oct 2000
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Remember to Smile
Unregistered
posted
Dear frikfrak, So sorry to hear of your son's illness, and your pain as his loving parent. You have much empathy here.
Lyme neuroborreliosis, Babesia, and Bartonella are all best diagnosed clinically by a knowledgeable, successful, ILADS-trained & ILADS-active LLMD who networks with other successful LLMDs.
Each of these 3 horrific, epidemic co-infections are difficult to culture in labs, so testing is tough (and poor in many average labs).
From your descriptions in several threads, your son's symptoms scream bartonellosis to the Lyme-Aware.
Where was he tested? Quest is very poor for LD. LabCorp can be a bit better, sometimes.
IGeneX, Inc in CA is the best for LD testing.
Medical Diagnostic Labs (MDL) in Hamilton, NJ can do most LD testing well, too.
BUT
There are DOZENS of spp of Babesia that can impact human health and DOZENS of spp of Bartonella, too.
Only Babesia microcoti and Babesia duncani are tested in US labs today. If your son has Babesiosis (VERY likely in NJ!), he will never heal and achieve long-term remission unless the Babesia protozoans are controlled. The most successful LLMDs now know this, and they TREAT BABESIA FIRST.
After all Babs sx clear, then Bartonellosis must be tackled. Only if Babs, then Bart are cleared can a Lyme patient break free of neuroborreliosis. These stealth, synergistic infections work together, enabling each other to adapt to each individual human they inhabit.
Galaxy Lab in NC is the ONLY lab with reliable testing for Bartonella spp. BUT, it's not necessary to get lab work to prove a Bart infection for at least two reasons:
1) Your son exhibits numerous, obvious symptoms of bartonellosis, and
2) There are as yet no tx protocols specific to a particular spp of Bart.
Meantime, be sure to do everything you can to eliminate all gluten, yeast, and cow dairy from his diet. He'll be best on a strict Candida-control diet for the next decade.
IF your son has significant problems with yeast overgrowth, this will hamper his ability to clear the co-infections and any other parasites.
All that said, I'm not a healthcare professional, but I AM a Lymie on the uphill with a good LLMD.
I've been infected about 40 yrs, and re-exposed & re-infected several times. A BIG factor in my ability to do well on abx tx is that I've had only limited dairy for ~20yrs and wheat-free for more than a dozen years. All that said, I still anticipate I may need tx with my LLMD for at least 3 yrs total. Chronic LD is very difficult to clear, but it CAN be done!
For more on the vital aspect of an appropriate, highly plant-based diet, please read The China Study by Campbell. It will rock your world.
I cannot comment on RMSF, sorry.
For future posts, please break up sentences into short paragraphs so other patients can read more easily. Thx.
posted
Breaking up frikfrak's post for easier reading:
When he was first diagnosed his symptoms weren't nearly as bad, basically just acting strange, bad temper (he was never like that before)
then it just progressed to doing things completely out of character: listening to rap music, showering 3x daily, highlighting his bible with different color markers, not sleeping;
and unfortunately just down hill;
developed OCD like symptoms; washing hands constantly, checking light switches...
now he basically just sits and stares at TV (whether on or not) doesn't speak except for occasionally 1 liners, mostly "it's good" and "don't know".
I don't think he's gotten worse for a couple of months, I think he's kind of hit a wall.
Oh, he does laugh uncontrollably thru-out the day. More so since he's been on the doxy. No one seems to know why.
Well I do want to thank BethS, hopefully my son will start to make noticeably changes now.
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
Wow...a lot of this sounds very familiar.
Has your son been tested for strep and mycoplasma pneumonia?
If he has been blood tested and they came back negative, I'd try it again. For myco p ask for both IgM and IgG.
For strep ask for Anti-D-NaseB and ASO titers.
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
Not knowing his age and background, but by looking at his "symptoms", I am not sure they are that unusual? Listening to rap music as a symptom? I am not sure.
But then again, I do not know the background.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
Be sure he is tested for KPU Pyrroluria. 80 % of Lymies have this. The tests for Bart,Babs etc r not reliable. Most good Docs treat by symptoms and energy testing.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
My son has a genetic detox problem that became apparent after treatment with tinidazole. He developed symptoms of high anxiety, foggy head, weakness etc. We then did the Detoxi Genomic test and found out about this problem. Once we started to work around it and detox him in a different way he improved tremendously. Now he is able to carry on with his lyme treatment, but we energetically test him to ensure new remedies will suit him.
Posts: 174 | From UK | Registered: Oct 2009
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posted
Sounds like bart to me. My boy is on Doxy for the bart and he has the laughing and weird ritual things starting up know after a year in treatment. I look at the new surge of symptoms as a sign the doxy is working and there is a full blown war going on right now in his body.
Posts: 303 | From green bay, wi | Registered: Mar 2009
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You have much empathy here.![[Frown]](frown.gif)
If your son has Babesiosis (VERY likely in NJ!), he will never heal and achieve long-term remission unless the Babesia protozoans are controlled. The most successful LLMDs now know this, and they TREAT BABESIA FIRST.![[shake]](graemlins/shake.gif)
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