posted
I've been posting/reading here for awhile, my now 6 yr old son has been suffering from lyme for 2 yrs. Has 7 positive bands.
Symptoms have been headaches, gastro/vomiting issues, tingling sensations on face, visual hallucinations, those seemed to have stopped, but now he started with visual black outs. Said it is like trying to look out a window when its pouring rain. Also has lyme arthritis that affects his knees.
His symptoms seem to wax and wane. Though the arthritis issues seem pretty constant. Visual issues were bad a few months ago (he began running into things when his vision went out), but now all is quiet in that area too.
He is having learning issues (reading) at school & problems with focus. Not sure this is lyme related, but suspect it is.
My dilemma. Have been reading about so many here on abx, many are not better and seem to suffer more from the affects.
We have an appt with Dr. Jones in CT (in May), but am considering cancelling. Son's symptoms are mild right now, not sure they warrant aggressive treatment?
Anyone elses symptoms come and go? Can he get better by himself? Will symptoms get worse or be something he can deal with? Just don't know if it's fair to put a 6 yr old through herxing etc.
Have seen 2 neurologists, gastrologist, otoologist (he had his tonsils/adnoids out in Sept), opthamologist, he has had a MRI, EKG and EEG.
Just want to do right for my 6 yr old.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
quote:Just want to do right for my 6 yr old.
I suggest you keep the appoint w/Dr. J.
Or you can wait & see what other devastating symptoms/damage happens.
scary reality.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Learning issues are very common in children with lyme, so it is likely that lyme is the culprit in this area as well. I've read studies that show a drop in IQ of 20 points. ADHD is also common in kids with lyme.
Symptoms of lyme are initially migratory, but will eventually settle in and worsen. Treatment will only become more complicated if you continue to wait and see.
The good news is that children tend to respond well to treatment, and can ideed have a full recovery.
As a parent, I would rather go through the challanges of treatment, than risk long term permanant damage to my child.
As to successes, my own child, who is the same age as yours, was very ill from lyme, but as of today, is almost totally symptom free. Children can and do get better.
I, personally, would keep that appointment. Better to see a doc and get his opinion, than lose the appointment and end up regretting it later.
Best of luck to you and your child. kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I wouldn't even question whether or not to treat. If my child had positive bands and even one symptom, I would treat them.
Allowing the symptoms to worsen before treating isn't a good alternative.
And people do get better. The people that post here are mostly those of us that are still ill. The well ones have moved on with their lives.
Keep your appointment with Dr J. Express your concerns to him and get a professional opinion!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
"I wouldn't even question whether or not to treat. If my child had positive bands and even one symptom, I would treat them."
I should clarify, he was treated with two rounds of amox when he initially tested positive in '06.
(He was misdiagnosed 9 months earlier even though he had rash and other classic symptoms.)
This is just so confusing how he can seem so normal for a month or more & then suddenly present with another sometimes bizarre symptom. Then that symptom seems to subside & all is quiet again.
Not trying to be stupid here, just trying to weigh the risks of aggressive treatment, what those toxic meds will do to his body system vs benefits.
I'm aware that altough the meds may attack the lyme, they may also cause negative affects on his body/immune system.
No lies, that worries me.
Not sure I'm willing to put him through it if the outcome isn't cure.
Not to worry, will keep the appt with Dr. J, jut thinking outloud.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Personally I believe the outcome is a cure. My LLMD strongly believes in a cure, some call it remission; but people do get well, whatever you want to call it.
I guess I am just looking at what can result when treatment is delayed. Many people can get very very ill, even paralized if LD is left untreated.
I don't want to sound like an alarmist, just think your child will have an easier time treating before he gets extremely ill. I think he would be more likely to get well faster also before he is extremely ill.
I wish you the best and please keep up posted!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I wish you and your son the very best. I have heard very postive feedback on Dr.J. Perhaps, write down your concerns and questions. I dont know about you but I tend to get overwhelmed with allthe onformation that I leave important things out.
I hope your son gets better!!!
Posts: 171 | From the land of oz | Registered: Feb 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm not you, but I don't wish this hell on anyone, especially a young child. No one deserves to live with Lyme. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
It's better to be safe and to have done whatever the specialists advise than to be sorry down the road because we didn't do something to help ourselves or someone else.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
This disease waxes and wanes throughout it's course. I would keep the appointment and treat aggressively whether you think he's getting better or not.
It won't disappear on it's own....if that were so, none of us would be here.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Two rounds of a single antibiotic are NOT enough to treat lyme. I'm sorry that your son did not get the proper treatment but most doctors simply have no education about the combination treatment required - or at a minimum of 30 weeks may be required.
I became ill as a child - tick bites - rash - on and off - and then at age 19 my life got worse when "mono" hit. It would be another 2 decades before learning about the 3 tick-borne infections that likely destroyed my life - my marriage, my chance of making a living, etc.
Looking back at my school records, I lost exactly 20 points in I.Q. after the summer on my grandmother's farm - and that funny rash that no one could figure out.
PLEASE. PLEASE. PLEASE keep that appointment with your son's doctor.
If lyme, this disease can wax and wane for decades, as Meg points out above.
It will not disappear on its own. It may hide out but it will not disappear without proper attention.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
*** " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ." ***
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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In the meantime, Gotu Kola may help your son with focusing. It is not a treatment for lyme, at all, but a support measure.
From a source below: "In Nepal, during the ceremony for the first day of spring, gotu kola leaf is given to schoolchildren to help them in their studies by improving memory and concentration. "
================
Gotu Kola (not a cola) can calm the nervous system while also helping with alertness. It helps give a sense of well-being without feeling ``wired'' or ``hungover''.
Of everything I've used over the years, I cannot say enough good about the wonderful effects I've seen - in many ways - from Gotu Kola.
GOTU KOLA -- An Under-Appreciated Herb: Multifaceted Benefits on Microcirculation for Cardiovascular and Cognitive Health -- By Linda Fugate, PhD
The best nutrition in the world will not do anyone any good if it doesn't reach our tissues. The gatekeeper to tissues is the microcirculatory system, which includes blood vessels smaller than 0.1 mm in diameter. The health of the microcirculatory system is now recognized as critical to the total health of the individual. (1)
Gotu Kola's Effect on the Circulatory System . . .
From Wound Healing to Brain Health . . .
. . .
Conclusion
. . .
Gotu Kola's primary action is enhancement of the health of the circulatory system. Because circulation is critical to the health of the entire body, Gotu Kola offers benefits in a variety of conditions.
The antioxidant and collagen supportive functions of Gotu Kola are particularly important in enhancing healing of damaged tissues.
Gotu Kola is bitter and astringent in taste and cooling in action. It is a brain and memory tonic, and an anti-poison, and very useful for wound and skin healing.
. . .
TAM doctors use it as a brain and memory tonic, and have found it especially useful in children.
In Nepal, during the ceremony for the first day of spring, gotu kola leaf is given to schoolchildren to help them in their studies by improving memory and concentration.
It is very safe and extremely effective. TAM doctors also use it to cleanse the system of toxins and reduce inflammation. TCM doctors use gotu kola to clear up boils and toxic fevers. . .
The primary effects of gotu kola include both wound healing and improvement of mental clarity and emotional balance. . . .
Research Highlights
* Western scientists have focused on the herb's wound and skin healing effects.
Numerous studies from around the world have demonstrated its efficacy in treating keloids, leg ulcers, phlebitis, slow-healing wounds, leprosy, surgical lesions, cellulitis, burns, dermatitis, venous disorders, and even cirrhosis of the liver (Maquart et al., 1999; Shukla et al., 1999; Hausen, 1993; Cesarone et al., 1992).
These studies illustrate the plant's numerous stimulating effects on the healing processes of the skin and connective tissue.
* The Indian Central Council for Research on Ayurveda and Siddha, citing more than ten pharmacological and animal studies of gotu kola, also found evidence of the following characteristics: CNS depressant [calming without causing drowiness], memory enhancer, anti-convulsant, antispasmodic, behavior and intelligence enhancer, and blood sugar regulator (Pandley et al., eds, 1996).
I said in an earlier email......do not cancel that apt!!! Please go!!
Please check other posts. PM me and I can tell you about my money/husband issues. We made it we are stronger now, and he knows that we are ALL sick!!
Regards, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I wouldn't cancel the appointment.
Please do some research on Lyme disease.
Please.
You will see that this is a disease that waxes and wanes.
About every 30 days there may be a "flare" of symptoms.
I have two young children with congenital Lyme from me.
A 7yr old and a 5yr old.
I knew they both had Lyme (in my heart) prior to getting test results.
My goal is to get them cured, in remission, without symptoms
Whatever you want to call it.
Aggressive treatment?
Not really. Not when compared to mine and my husbands'.
I know they have the best chance of beating this if we get to it
Prior to hitting puberty.
Plus, we run the risk of being exposed again due to where we live.
So, from one Mom to another,
Please do your homework. Research Lyme disease symptoms in children.
Read posts here and see what happens to children who
Go untreated for decades and then what their lives were like.
If nothing else, keep the doctor's appt and see what Dr. J recommends.
At the very least you will be able to say that you took your child
To one of the best pediatric Lyme docs in the country.
After 20 months of treatment, one of my babies is without symptoms.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Join us on www.lymefriends.com. You can't have too much support; lots of us are there as well. It is a social networking site and you'll find lots of support there.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
My recommendation is that you call Dr J's office and see if they have an earlier appt. You could be put on a list in case they have a cancellation. The earlier treatment starts, the sooner your son will be feeling better.
Five yrs ago, our family was blessed to learn about Dr J here on LymeNet. I'll forever be grateful!!! Words can't describe how much I admire him. Honestly, I felt so honored to be in his presence.
My grandson's illness started when he was 7, but it took a several years to get a diagnosis. His symptoms would go away, but kept returning. At the age of 12, he saw Dr J.
He has had some of the same symptoms as your son, mainly neurological and serious changes in his vision (but no black-outs or hallucinations).
Dr J's diagnosis was Lyme Encephalitis (inflamation of the brain) and most likely Bartonella, even tho tests have never been positive (so many different strains of the bacteria). Bartonella tends to affect the neuro system and vision, among other things.
Dr J has treated my grandson for both illnesses and he is almost symptom free. He's almost 17 now. I believe the treatment time would have been shorter if it had not taken 5 years to finally get proper dosage and combination of meds.
Your son's treatment may not be as traumatic as others have experienced. I feel sure Dr J will choose what is best with the least serious affects on your child.
His treatment may not bother him nearly as much as all the tests and various dr appts he's had to endure.
My grandson was blessed to be able to continue playing sports, so Dr J recommended giving him oral abx, even tho it would take about 5 yrs of treatment. He never had a herx, but has gradually improved and is near the end of treatment now.
Please don't dwell on the possible negative things. They may not even happen.
Look at the positive side: 1. You've got one of the best Lyme Pediatricians ever. 2. You live relatively close to him. (We've had to travel from South Carolina every three months for almost 5 yrs.)
3. When children are treated adequately, they have a great chance to be cured. 4. If your child has Co-Infections, too, Dr J understands how they interact with Lyme disease.
5. Be assured that Dr J will select the best treatment for your son based on his diagnosis. 6. He has a special way of putting a child and the parents at ease.
Please keep giving us updates. We care!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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