Been treating my son (21) for 2 1/2 years now and nothing. Latest, and greatest, LLMD actually was uncomfortably treating him because after 3 months of HIS protocol, my son, as usual, did not get better. This LLMD is very known and supposed to be one of the best.
So, he's been off meds for approx. 2 months, took him to university hospital and had docs take a look at everything. Their conclusion: he had lyme back then but no longer, his mental status is NOT because of lyme but maybe it did set something off.
We had the Advanced Labs blood test done and am waiting for results. Got inconclusive after 10 days, waiting for 10 week results.
So basically just treat with psych meds and good luck.
So, because he doesn't/ hasn't gotten any better over the last 2 1/2 years and now is mentally disabled, do we listen and give up that its lyme?
He's lost, confused, just sits, only says "its good" no matter the question, we can get a yes or no if we repeat the question several times
Any help or advice would be greatly appreciated. I'm wondering if maybe they aren't right...2 1/2 years of treatment and only got worse over time, never better. He's been on all the meds and has seen 3 LLMDS. Is it possible it can still be lyme. BTW: original lyme test came back all 10 bands positive.
His Mom
Posts: 158 | From NJ | Registered: Jul 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
PLEASE look into treating him for parasites/worms an often overlooked co-infection of lyme even by LLMDs. Mainstream medicine doesn't have a clie about parasites and thinks it's a problem only in third world countries.
Check out the symptom list at Humaworm and google parasite symptoms. Thirty days of tx is never enough and can take several yrs.
Do ALL the research about parasites that you can. Antiparasitics and salt/c were the only thing that got me well and I had SEVERE neuro Lyme with a bullseye found on my head.
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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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
That's a tough call. Maybe it would be worth seeing someone like Dr. K or someone trained by him. Lyme is only part of what they look at. They look at toxicity, parasites, metals, KPU, etc.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.
This goes for EVERY TYPE OF DOCTOR, especially any psychologist or psychiatrist. Especially. They MUST know all about lyme before any psych drug might even be considered. BEFORE.
A good ILADS educated LL ND would also have a strong background regarding nutrient deficiencies that can also CAUSE many psych symptoms. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'd answer "it's all good" too when overwhelmed. He likely just wants stability.
I'm so very sorry for all this. Even if the current LLMD is excellent - I think no one doctor can have the skill to treat all the toughest cases.
It may take a team, and one with a range of tools.
Wonder if your son has also been incorporating support supplements all along? Liver support can make all the difference.
What about RIFE? Guided by a LL ND. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
thanks everyone. I actually have an appt. next week at a wellness center and they test for metals and such. will definitely ask about parasites. how long do you treat for parasites? when do you know your done, especially since I cannot ask my son.
I really want to thank everyone for their suggestions. His Mom
Posts: 158 | From NJ | Registered: Jul 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
You have to treat until symptom free and then maintenance to make sure no left over eggs or larva can start the cycle all over again.
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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posted
If he's mentally disabled he probably doesn't have an active lyme infection. That sort of trouble is much more commonly bart.
Bart tests are even less dependable than lyme tests.
I had quite a row with and IDSA infectious disease specialist once regarding my son. Some doxy appeared to help some with all the mental health systems. ID guy says "it's not lyme". I said "OK, but if an antibiotic helped him it could be an infection. You're the infectious disease specialist: if it's not lyme then tell me what it is".
He really wasn't much help. We were clearly not welcome there, he didn't want to treat mentally ill patients whose parents fantasized the problem was a tick bite. Went to LLND, got zith, son got better.
What are his symptoms, and what was he treated with? Lyme drugs usually won't clear up bart.
Posts: 146 | From Maine | Registered: Aug 2011
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-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
I don't have much to offer in the way of ideas but do want to say how very sorry I am that you all are going through this. I am a LymeMom too. My daughter has been in treatment for over 2 years and is not showing any signs of improvement. We have also seen 3 ILADS docs and are starting with the 4th one later this month.
I would suggest finding an ILADS Psychiatrist. My daughter has been seeing one for 2 years. She has been so helpful. She understands how TBD can effect the CNS, and knows what tests to run and which meds can help.
Because of his age I am wondering how compliant he has been with his protocols. If I left it up to my daughter to sort her meds and take them on her own she would probably be less than 50% compliant. It's hard as.a parent. They should be independent and self-sufficient at this age, yet they also have a serious and life threatening infection that totally impacts their ability to care for themselves the way healthy children would.
I would keep searching for answers. If he didn't have his mental health issues until post Lyme, then I think that his symptoms are more than likely a result of raging infection.
Please feel free to PM me if you would like the ILADS Dr I mentioned above.
Best wishes for you and yours and trust your Mom instinct. You know your son better than Nyone else!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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[ 06-10-2012, 01:16 AM: Message edited by: LymeMom Kellye ]
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
frikfrack-how are you and your son doing. with 10 bands pos it is hard to think it wasnt lyme. that said...when the top llmds saw my mom they said she was so far gone mentally and physically it would be immoral to tx for lyme cuz it would be so painful and hard and she wouldnt understand
i feel for you and wonder what is happening now
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Uh, 3 months and not feeling better? Even two years? That's nothing in Lyme treatment for most of us who have a serious case.
Keep looking for another ILADS doc who will treat all the coinfections. I'm on my 3rd LLMD, and the first one I went to was considered a "top notch" LLMD.
I was on disability for 2 years. Returned to work 4 more years, and now am retired enjoying life abour 90% functioning.
Keep trying and don't give up hope.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
hi, do you mind if I ask who your current llmd is? I am on my 3rd one too, and about at the end of my rope. I am going into my 6th year of treatment.
-------------------- "Yeah, I miss me too." Posts: 235 | From NY originally registered in 2008 | Registered: Nov 2012
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Update: we are now seeing another LLMD (4th). Dr. H in NY for 2 months now. Son still no better but we're still trying.
They (doc) is hopeful so we'll see. He is on meds he's never been on before and also alot of supplements for detoxing. His previous LLMDs didn't do anything for detoxing.
He has tested positive for Babesia so we're treating that also.
He tested negative for parasites. Metal testing came back OK...alittle high in some but nothing terrible.
thanks everyone for your help, I truly appreciate it.
Hopefully the next time I update it'll be to say he's improved.
to lpkayak: How's your Mom?
His Mom
Posts: 158 | From NJ | Registered: Jul 2010
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