posted
my son had western blot test positive with 9 bands in 2009 and 2013.
IgG : 18, 23,28, 30, 39, 41, 58, 66,93 IgM : -ve
He got only 2 weeks of doxycycline. he has symptoms of aggression every week or so, high fatigue, lies on the bed all the time. because aggression, psych hospitalized. Initial 18 days, my son said he is fine and does not need any psych medicines.
hospital went for court order and started giving medicine. It is already 40 days and hospital says he is going to be there for long time. no lyme treatment and do not transfer to other hospitals. atleast asking for ECT so that he can come out of catatonic state and realizes himself.
Trying to contact outside lawyer. don't know what to do. God is there to bless my son.
................................................
Breaking up the post for easier reading for many here -
Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
You wrote:"
atleast asking for ECT so that he can come out of catatonic state and realizes himself."
Who is asking for ECT? I hope someone near by can be helpful for you.
-------------------- Ann-OH Posts: 1745 | From Ohio | Registered: Aug 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please, do not have them do the ECT, please.
Can you talk to the lyme support group nearest to you / him? They may be able to help.
I can't type more just hope you find the best help you can. Take care. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Agree - don't do the ECT. He needs real Lyme treatment. Your state yahoo discussion group is at https://groups.yahoo.com/neo/groups/massachussetslyme/info - I suggest you join and discuss there, as another idea for some help.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
thanks for your suggestions... Robin123..... that website does not exist.
He does not allow any family members to visit him or talk to him over the phone either. He is so mad that we sent him to hospitals all the time, he does not want to come home either. surprisingly, earlier, after ECT, his behavior changed totally and he was calling mom and dad, no aggression, no negative thinking, alert, knows what is happening to him etc... Initially we parents got scared to give ECT, but ECT is the only one that showed significant improvement. Several medicines we tried. none showed effect like ECT. We parents are thinking that try ECT and once he understands himself, try to get ILADS doctor's help.
Got the Igenex Kit also but hospital does not allow blood samples. Thought we get more data while he is in the hospital.
Go all the way to hospital doors and hope that he may change his mind and allow his mom to see him....but....
hard to run our daily life.. Praying God ...breathing....
Posts: 25 | From massachussetts | Registered: Jul 2015
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Scroll down to the "Attorneys" section where it says "Attorneys or Legal Firms who will help Lyme patients with various cases". Perhaps you will find one who can help your specific case.
Prayers for all of you.
Posts: 9020 | From Illinois | Registered: May 2006
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But IDUC website is more informative and helpful. thanks.
Keep on praying and believing strongly that God will give my son enough strength to go through his lyme disease symptoms, side effects of psychotic medicines and his own feelings like frustration at the same time.
Thanks for all of your help.
Posts: 25 | From massachussetts | Registered: Jul 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If lyme is an issue, ECT can make that much, much worse. The electrical stimulation can cause the lyme spirochetes to be more destructive. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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don't know the reason, but my son became better with ECT. (That dose of electrical energy might be killing the bacteria atleast in that particular zone of brain??. or became better by getting out of the side effects of psychotic medicines).
Other interesting thing is my son was in south India, where the temperature ranges from 80-110 F. he was there for 8 months without any medicine, feeling better, more energetic but not all the time. somedays he became more aggressive. Could it be due to high temperature that killed the bacteria like sauna?. don't know?
Posts: 25 | From massachussetts | Registered: Jul 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ECT will not "kill" lyme. He did not stay better (and very sorry to read that). Symptoms may have improved temporarily due to change in meds or other things or temporary boost in some way but boosts (for those with lyme) usually boomerang.
Very likely, an adrenal boost (from the shocks) can mask the truth as such boosts are very taxing to the body / brain. If he might have been give any kind of steroids, that could also mask and then come back to clobber.
High heat even to 110 will not kill lyme. It would have to get much hotter than that and so hot that a human body could not survive. However, and although for the most part he seems unusual in that he could tolerate that kind of heat,
there are so many variables as to why he may have been better there and each one should be considered.
High heat is best avoided by those with lyme. Regular saunas are not a good idea. The LOW HEAT infrared saunas are, though.
Please consult with an ILADS educated LLMD.
I know this is a very serious time for you, him, your family. So it's very important to talk to the right kind of expert. Please do not make any assumptions. Good luck.
The links others have provided above are very good. I hope you can connect and find the best guidance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Be very careful of ECT. My friend lost her long term memory due to this. She did not have lyme.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10170 | From Illinois | Registered: Aug 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Electrical stimulation should not be used in patients with Lyme. Perhaps?
According to Dr. B- in his guidelines- "Ice (vasoconstriction) and electrical stimulation (muscle spasm and trauma) should not be used!"
It is my strong belief that electrical stimulation kills spirochetes. The herx that follows in those who are long-time chronic patients is something that brings one close to death. I've had it happen to me multiple times and have seen it personally with two other long time Lyme patients, and have heard about it from dozens more patients and doctors.
In those with Lyme for lesser amounts of time (1-4 years as opposed to 10 or more years) and those with systems that will clear out toxins without major problems (NOT MTHFR patients), electrical stimulation done slowly and carefully- I think this is one way to kill spirochetes.
In my case, which is a good one to use for an example because it is not tainted by any preconceived notions- it was before we knew about herxing- it took years to pin point the problem.
I'd get electrical stimulation in PT or at the chiropractors and would be fine at the time. Three days later- sometimes 3 1/2 days- I would be deathly ill in bed or hospitalized. Not able to connect it with the PT several days before (cause we didn't know about herxes and I was fine for a couple of days in between), I continued doing PT over the years with the same bad reaction. Many, many times. (Yes, the stupid label applies here.)
Once I realized what might be causing the problem, the PT and the doctor, not LL, insisted electrical stimulation could not cause the reactions I was having. INSISTED! So I went several more years having reactions when I'd let them do the procedure. They kept saying elec stimulation is safe for everyone.
Eventually, a LLMD got multiple reports from his patients of this same thing happening, with no known cause. We eventually connected with Dr. B about it and said something needed to be done. Either the LLMD or Dr. B wrote a letter to the PT places saying NO electric stimulation was to be used. None of us knew at the time WHY this was happening, but it was.
I believe you don't need a rife machine either with fancy "settings". A PT electrical stimulation machine, even a TENS unit to some extent, can kill spirochetes.
I believe that just like with antibiotics, when the spirochetes are threatened with electric stimulation the ones not killed off early on will change forms and go into hiding- causing the patient to feel better until the threat (electrical stimulation is removed)- and then the spirochetes will start reproducing again and the symptoms will return.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I've never told that story publicly, but seeing this situation I felt it necessary. It is very possible the ECT treatment did provide some relief, killing spirochetes, and later the symptoms came back when the ECT was discontinued. That said, to be clear, I will never recommend ECT for anyone.
The heat in India- my guess- the high temps allows the blood to flow better and the more-than-normal sweating clears toxins. The body's best elimination organ (for getting rid of toxins) is the skin. The reason why he would have some "bad days" in with the good there is, in my opinion, due to the spirochetes replicating/dying off and toxins then being eliminated.
I am sickened this is happening to your son. Horrified actually. It is becoming a more common thing because arrogant idiot doctors know they can typically get away with it. Boston area is HORRIBLE for these types of situations. I've seen it happen at Hopkins too.
It took attorneys to get the children out of the jail cell they were confined to in the name of medicine, and more than one out-and-out "escape" that I know of.
I don't know if you can get him tested for Bartonella, but if possible I would suggest it.
I don't know if anything I shared will help or not, but I do hope so.
You might want to contact Dr. Bran****** in NJ for assistance? Go to this link and type in the authors last name in the search bar- upper right. You may see something checking out his articles that may help?
posted
The main symptom that makes us to worry is "AGGRESSION". Recently it started becoming more frequently. Usually, he is so fatigue, lying down on the bed all the time. But all of a sudden, he becomes so active, walks fast, talks fast, becomes highly energetic and might hit anybody even if we talk to him. Sometimes, all of a sudden (in the middle of watching TV)he goes down floor and tries to cover himself and acts like sleeping. But if we go close to him, he will say "leave me alone". If we insist further what is happening to him, then "if you talk more, you will see what will happen". But after couple of hours, he calms down and he comes up and he behaves normal and eats or watches TV or so. An average this happens twice in a month. Usually my son is soft spoken, well mannered, close to ground, friendly, helping natured. We see a different person altogether at times. This aggression became more frequent recently since last year, earlier he was not like that. He wanted to sleep in down stairs all the time. May be he was trying to cover his aggression downstairs.
posted
For our situation, it will be ideal for us to have a INPATIENT LYME HOSPITAL. otherwise, it is difficult to take him to LLMD for an apoointment while he does not listen/hates us with aggression. Hope once he gets better and realizes to himself, he will be on his own.
Posts: 25 | From massachussetts | Registered: Jul 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Unfortunately, there is no such thing as an INPATIENT LYME HOSPITAL that I know of.
Posts: 9931 | From Maryland | Registered: Dec 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I am so sorry for this to be happening to you and your son.
I went through similar things with my son- the sx of aggression, I mean.
I also had some really horrible sx of aggression from ticks. and a lot of mental issues. but I think mine were from bartonella. lyme caused some for me but majority was bart , I believe. and bart did not show up in my Igenex test , but in my alternative testing I had and thank God it did there or I may have been in a terrible situation by now.
I hope you can find a way to make this work. I will be praying for you. so sorry you have this struggle.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
Once he comes out ( it is already 45 days) we will go for full blown testing with LLMD doctor.
Thanks for all of you for your prayers. God is there for him and will give enough strength to go through oneside drilling by bacteria and otherside side effects of medicines. In between his feelings.. I can't imagine anymore since I am becoming fearful, scared, helpless, frustrated, shaking, on and on... Breathing and praying God...
Posts: 25 | From massachussetts | Registered: Jul 2015
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
do you have any inkling of when they might release him?
I am praying hard for you.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
Thanks for all of you and your prayers. My son got released on Friday. We are waiting to see LLMD doctor asap. thanks once again.
Posts: 25 | From massachussetts | Registered: Jul 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Wonderful! Will pray he can see a lyme doc very shortly.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
My son came out of the hospital and somehow we got a LLMD doctor at NY. after seeing his labwork, doctor immediately wrote oral antibiotics and my son started showing improvement gradually. He is much better than earlier. However, doctor feels that he needs IV antibiotics. My son's PCP denies the referral and outrightly says they do not believe in lyme disease. Insurance is also not paying for his treatment. Our PCP office suggested me to go find a PCP who believes in PCP?. Any suggestions?. We are conituing the treatment and paying out of pocket. Insurance says we can not claim these bills and/or we cannot predate once if we find LYME PCP. don't know what to do.
Posts: 25 | From massachussetts | Registered: Jul 2015
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posted
Recently I asked a known ID doctor about the following question: "IgG positive means, Lyme bacteria past infection but not currently active. So what happened to the bacteria once entered into blood?. Did patient's body killed the bacteria?." ID doctor said we don't know. If human body kills the bacteria, we don't need any medicine for any bacteria. Then syphyllis and malaria patients do not need any abx and they can cure themselves.
Other point that bothers me is that some of the lyme patients (neuro lyme) get diagnosed as psychotic patients. However, there is no diagnostic test for psychotic diseases such as bipolar, schizhophrenia, schizhoaffective disorder etc... And, psychiatrists prescribe psychotic medicine without any problem. But when it comes to Lyme disease, everyone in the world asks for diagnostic test and currently active or not. Quite interesting theory.
Posts: 25 | From massachussetts | Registered: Jul 2015
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Feel free to print and hand out to every doctor that you see. If any blatantly refuse to accept the literature to at least consider, find another doctor.
Edessa
PS, One story comes to mind that I read on my forrays into lyme and psychiatry. About a man in his late 20s to 30s came into the doctor and was promptly diagnosed with bi-polar disease. The behaviors he was experiencing had never manifested previously.
It tends to be rather uncommon to suddenly manifest bi-polar symptoms in your adulthood unless you've had the behaviors of the disease most of your life. (Chronic Lyme in youth with bi-polor?)
The good doctor looked further into the case and figured out (can't remember how exactly) that it may be a tick bite infection. The ill man was started on antibiotics and was effectively 'cured' of his bi-polor. All I can say is WOW!
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
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posted
My son was doing better for 3-4 weeks and since insurance does not pay for IV treatment, doctor prescribed Bicellin IM injections ( twice per week). Only the problem with Bicellin is that after injection, next day or so, he is feeling low, irritable and similar old symptoms for a day. and then he feels better till for next injection. Believe, it may be because of herx. He is taking Toxease (detox medicine) and lime water. But still that oneday is kind of difficult to go through. any suggestions, please. Read about castor oil, Epsom salt bath etc...
Posts: 25 | From massachussetts | Registered: Jul 2015
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posted
when he gets herx, he does not listen, har to talk to him, acts weird, derealization, aggressive,.... so many symptoms back. hard to deal with.
Posts: 25 | From massachussetts | Registered: Jul 2015
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posted
LLMD suggested to decrease the frequency of bicellin 1.2 Mu injections ( once in two weeks instead of twice in a week). It has been two weeks from his last injection, but still he is getting the same symptoms (particularly aggression) which is hard to deal with. But he is on 3 oral abx everyday.
Posts: 25 | From massachussetts | Registered: Jul 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
how long this herx can be?. Ofcourse it is hard to tell. But in general. The problem is that he is silent and does not express and talk to parents. One or two words only with new people or relatives. sleeps all the time except for food and bathroom. symptoms are like earlier but are getting worse. He is not in a position to go out and take injection also (usually nurse gives).
Posts: 25 | From massachussetts | Registered: Jul 2015
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posted
Thanks hoping. After Bicellin shorts in october 2015, my son got severely herxed till december. Nothing worked except Burbur for his high irritability/anger/outburst. We could not go close to him. Now we can talk to him and he responds for our wuestions. His current severe symptoms are: 1. continuous thoughts 2. Talking to himslef/laughing to himself 3. Mood swings 4. lack of concentration/focus
Our LLMD suggested Samento drops. Even with half-a-drop ( added one drop in 4 oz water and devidied into half), he becomes highly irritable/anger for a few days. (This shows that his spirochete load is very high?). Bur Burbur and alkaseltzer ( 1 tablet) seems to be helping for his irritability point of view. But still he has serious thoughts and all the above.
Any suggestions about samento usage?. Right now, we are considering to go with detox methods till he becomes reasonably better and understands his symptoms and then try to think about killing the bacteria. He is so delicate for bicellin and samento. With oral abx, he does not get herx but we don't notice any significant improvement.
He is so irritable (bizarre behaviour) that he did not want us to explain about his symptoms to his doctor (at *****) and at the same time he cannot explain. His explanation is not continuous and systematic.
Thanks for suggesting the Lyme center *******. I read about it online. We are worried that he might get severely herx with IV abx and then he might be in the hospital for long time and dcotors prescribe antipsychotics with horrible side effects.
Really appreciate your help and suggestions. thanks.
Feel free to print and hand out to every doctor that you see. If any blatantly refuse to accept the literature to at least consider, find another doctor.
Edessa
PS, One story comes to mind that I read on my forrays into lyme and psychiatry. About a man in his late 20s to 30s came into the doctor and was promptly diagnosed with bi-polar disease. The behaviors he was experiencing had never manifested previously.
It tends to be rather uncommon to suddenly manifest bi-polar symptoms in your adulthood unless you've had the behaviors of the disease most of your life. (Chronic Lyme in youth with bi-polor?)
The good doctor looked further into the case and figured out (can't remember how exactly) that it may be a tick bite infection. The ill man was started on antibiotics and was effectively 'cured' of his bi-polor. All I can say is WOW!
I agree! I think much of today's psychiatric issues are related to stealth infections.
I think borreliosis causes the dementia-like symptoms (ie. forgetfulness, slow cognitive function, word-finding) GENERALLY, but,
that the coinfections such as Bartonella and Babesia cause most of the psychiatric/mood issues such as rage, anxiety, depression, OCD, etc...
Take these cases as cases in point (read each case):
And, just look into the connection of bi-polar disorder and schizophrenia with toxoplasmosis! HUGE CONNECTION!
blessmegod,
My unprofessional opinion about your son is that he is dealing with a coinfection that is causing his behavior-related symptoms, and my guess would lean towards babesia. But, bart can cause similar issues.
That is why when he does treatment for lyme, he gets more out of control. It's the ol' wack-a-mole "syndrome." When you hit one infection, the others come more to the surface and cause more symptoms. This is because "lyme" is an infectious "complex," involving multiple bugs that live in symbiosis with one another (it is almost never JUST Borrelia we are dealing with).
You must get the dominant infection load diminished. And, then work at them all together... WITH LOTS OF DETOX simultaneously.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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He is not taking any B-6 or energy drinks. we cut down sugar as low as possible.
He got the same symptoms aggressively with bicellin as well as samento. we tried half-a-drop but we want to go very diluted and see later on. first we want to go with Burbur/alkaseltzer (which are working) and see sometime like one or two weeks and try samento at very diluted and build up.
Posts: 25 | From massachussetts | Registered: Jul 2015
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As I mentioned earlier, my son was not offered any abx even after finding 9 bands in western blot (IgG) and doctors laughed at me and said he is bipolar and take zyprexa throughout his life for good. Several hospital visits, outside doctors denied lyme treamtnet and dumped several antipsychotics. I showed the blood reports and with summary with symptoms list, none helped.
Can anyone know, bloodtest during herx can find the PCR test positive easily?. If herx causes die-off bacteria, does it exist in the blood? so that it can be detected by PCR testing for Bb DNA easily?.
By the by, Igenex lab tested for co-infections (b artonella) and came negative.
Posts: 25 | From massachussetts | Registered: Jul 2015
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posted
My son gets lymerage/anger/outburst all of a sudden & uncontrollable. Breaks away everything including electronics, windows, walls, doors everything nearby. streams loud. it stays for 30-45 min.
Before getting rage, he may be calm watching tv or sleeping, he becomes active, high pulpitations, walking around, abnormal sounds, and then starts breaking with loud noices. Lifts entire 3 seater sofa oneside with one hand and throws away.
any PET scans/ MRI help?. ER denies any neurologist check-up and asks to go outside. My son is oppositional/ defiant and does not go to any appointments. Really hard.
online, similar situations are described on buhner website and elsewhere but no remedies.
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Omg ..sounds like bartonella rages...maybe get a plasma rife and run frequencys in house it will travel 30 40 ft?...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Has he been diagnosed with bartonella? Bartonella can cause major psychiatric symptoms. If he did not test positive for Bart, it is worth exploring if your Lyme doc thinks he has it based on a clinical diagnosis.
In my opinion, bartonella really needs to be explored. I hope you and your son get relief soon.
Posts: 1431 | From USA | Registered: Mar 2015
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posted
igenex bartonella tested negative. But what are the remedies to reduce lyme rage?. what can be done?. Lyme Doc prescribed rocephin IV, but worried that lymerage might become worse because of severe herx. My understanding is that we need to focus on heavy detox.
Burbur 10 drops....laughs to himself more...but helps slightly for lymerage.
Posts: 25 | From massachussetts | Registered: Jul 2015
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posted
igenex bartonella tested negative. But what are the remedies to reduce lyme rage?. what can be done?. Lyme Doc prescribed rocephin IV, but worried that lymerage might become worse because of severe herx. My understanding is that we need to focus on heavy detox.
Burbur 10 drops....laughs to himself more...but helps slightly for lymerage.
Posts: 25 | From massachussetts | Registered: Jul 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Perhaps you would benefit from having a one-time consultation with someone considered by many to be the #2 lyme doctor here on the east coast.
You can ask her these questions (how to reduce lyme rage, what can be done, etc.) and get her opinion, ideas. She would not become your doctor. You keep your current doctor.
This lady is so highly regarded that I really think it would be worth your while.
Email me for her name and how to get in touch with her. You do the consultation over the phone (or maybe Skype, I don't know). Her opinion would be quite valuable, I would think.
Her practice has a high focus on heavy detox. She will send you her extensive manual on how to do it--many high-quality supplements that are not made in a laboratory. She gives this to all her patients, but she is not taking new patients right now. So, you can get the manual just by having the one-time consult.
If anybody could help with this unusual case, it would be her. And, she is so compassionate and wonderful to deal with. Please write me so I can give you her name.
Who knows, maybe she would agree to take your son as a patient eventually.
I can give you detail on the supplements she recommends.
Posts: 9931 | From Maryland | Registered: Dec 2007
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