This is topic Any members have experience at clinic for brain damaged (DC)? Reporting back. in forum General Support at LymeNet Flash.

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Posted by lymemomtooo (Member # 5396) on :
My daughter goes there next week and I am wondering if any members have been there for an evaluation and how it went..Especially if any had any success. Thanks lymemomtooo

[ 10. March 2007, 12:39 PM: Message edited by: lymemomtooo ]
Posted by Cobweb (Member # 10053) on :
Are you talking an Amen Clinic? Is insurance covering any of this-or is it all out of pocket?
I will be interested in any responses you get on this thread.
Will they be assessing for lyme brain damage specifically, or just assessing treatment for brain damage from whatever the cause?

I sure hope this gives you some viable options for treatment.

Posted by seibertneurolyme (Member # 6416) on :

I would also be interested in what testing is done and what treatments are suggested.

Hubby's most recent experience with some neurologists was a big disappointment to say the least.

One private neuro thinks hubby has permanent brain damage from the combo of prior mercury poisoning and Lyme etc. Suggested an appointment with a neurosurgeon and doing the same surgery Michael J Fox had done to stop tremors/myoclonus.

Have not heard from the neurosurgeon (wanted to review medical records first before scheduling an appointment). Would not surprise me in the least if we never hear from the neurosurgeon.

The hospital neurologists (a teaching hospital in Pittsburgh, PA) said not to expect them to make a diagnosis. Would not even test for any tick-borne diseases but tested for a very rare genetic (one in a million) neuro disease called stiff-man syndrome. Repeated EEG and once again confirmed that hubby is not technically having seizures.

So far insurance is refusing to pay for a SPECT scan because hubby does not have a brain tumor.

Have an appointment next week with another neuro to evaluate possibility of a cerebral spinal fluid leak from 3 prior spinal taps. PCP spoke to this doc personally. If this appointment bombs out then I think hubby will say he can wait another 3 years before seeing any more neurologists.

The day I got him out of the hospital I put him back on low dose quinine for Babesia plus IV heparin -- so far improvement has been slow but steady (after 3 weeks).

If by some miracle you find a neuro who is both Lyme literate and has some new ideas then please let me know.

I wish you luck as I know how you have struggled to get help for your daughter. I just don't have much confidence in neurologists right now.

Bea Seibert
Posted by bettyg (Member # 6147) on :
welcome back lymemomtoo! i've missed you my friend.

why not copy/paste your entire thread and place in MEDICAL since very few come here? up for more help.

i feel for everyone of you and your loved one! i'm praying each of you can be given a solution and told WHY these things are happening and how to CURE them. [group hug] [kiss] [group hug]
Posted by lymemomtooo (Member # 5396) on :
Just noticed it was March 2nd. Happy St.David's Day!

Webby, yes that is the one. Will let you know how it goes.

Bea, I am almost 100% sure that most of it will not be covered by insurance. I could go on vacation for a couple of weeks to some really nice warm spot. But I have to try to get my daughter better.

They do spect scans to evaluate the damage,( we have had one elsewhere and know there is damage),and do very thorough evals on meds, symptoms, well everything out there and then come up with some plans that might help. They even want school evals.

I was especially interested in the hope for OCD. It has taken over my daughters life. Forget the lyme. The OCD has it's own life.

I do not know if they have anyone ll but that is now secondary and by the end of 3 days, some of them will be fully aware of the horrors of Lyme. I already have my material packed.

Betty, thanks for the nice comments. I am partially back. I am still shell shocked but it didn't all happen on board. Sometimes you do what you think is best for a cause and your every effort is misinterpreted. I just had to take a break and rethink my efforts. Some of which I am directing elsewhere, where I think I can make a difference. lymemomtooo
Posted by hopeful123 (Member # 3244) on :
good to see you again!! [Smile] [Cool]
Posted by bettyg (Member # 6147) on :
LMT, yes, i totally agree; you know of an incident i shared with you and how hurt i was from these 3 individuals.

yes, go away taking a much needed break, and come back with a different perspective. i'll find that out next week when i'm sure i'll be off here 7-10 plus day! who knows?

i hope you can get answers to your question above. god, please help me dear friend, lymemomtoo, as they again pursue other avenues trying to find the correct fork in the road to take them to RECOVERY/REMISSION!

please walk in their footprints right now and helping the others with serious problems too like bea/steve, etc. [group hug] [kiss] [group hug]
Posted by SuZ-Q (Member # 5903) on :
So good to see you back, LMT. I hope and pray for you that the A. Clinic will be able to shed some light that will lead to successful treatment.

Dr. C. has recommended that we take our daughter there also. Unfortunaley, since I was recently laid off from my job and with having IV for going on 15 months now, we just don't have the funds. I hope to be able to take her there at some point in the future.

I understand how the OCD can take over. We went though a period of that and now we are going through extreme social anxiety-sometimes to the point where we can't get her out of the house at all.

I am afraid she will become a total recluse who won't be able to function in society at all. She's been hospitalized for depression and suicidal tendencies twice in the last 6 months. We are having some moderate improvement with changes in drugs.

Enough of our situation. Please keep us updated on your daughter's condition and the results of your visits to the Clinic. I am glad you are plannng on educating them about Lyme. It is my understanding that they don't really seem to have much specific knowlege of Lyme there.

Wishing you all the best!
Posted by lymemomtooo (Member # 5396) on :
Hopeful and Suz-Q thanks. Betty best of luck and may they give you 18 year old parts. Ha.

Suzy, your daughter seems to be on part of the same path. It is a rough one. Find any diversions that you can to keep her going. Make excuses to get her out and make sure she is getting sunlight.

I will send some warnings by PM. Good luck..lmt
Posted by SuZ-Q (Member # 5903) on :

Thanks so much for the PM. I tried to reply, but your box was full.

We have taken several of the measures you mentioned, but I had not thought of some of them. Especially, the infusion things you mentioned.

I have looked at Dr. A's website extensively and the techniques look very promising. Did you watch the video? I found some of the testimonials interesting. I am so hopeful that you will find some relief for what your family has been going through. I have some idea of the stress and fear that you deal with, although we have not dealt with it on the same scale that you have.

Best of luck! I can't wait to hear about your visit to Reston.

Keeping you in my thoughts and prayers.

[group hug] to you and your daughter!
Posted by lymemomtooo (Member # 5396) on :
The appointments took place over 3 days. The first day an active brain spect scan was taken and later a history was compiled. The lady doing that had already read the packet that I gave them in the am. She had started filling in much of the history pre-meeting.

I found the place to be inviting, and professional. The radiologist went out of her way to make my daughter comfortable. She even had a puppy that my daughter let sit in her lap. This was unusual since her OCD is normally so bad that she will not touch her pets at home.

My daughter commented that the radiology room, set-up and proceedure made her much more comfortable than one done in a PA hospital. She said it was so much better.

Day 2-she had to sit in a dark room in a peaceful state to relax for the second spect scan.

We went shopping that afternoon. The clinic is located within a 20 mile radius of wonderful history and shopping areas. Also the food choices were outstanding.

Hotels are difficult to book unless you are willing to stay further away. If money is no object, then there are many available.

Day-3 we met with the psychiatrist. Together and separately. Unfortunately, I was informed that the damage is so severe that I need to lower my expectations. She stressed a FEW times that she wasn't sure I understood the severity of my daughters injuries. (Actually I was dying inside but my daughter was sitting there and I didn't want ot upset her more and I have gotten hardened to bad news thru this trip of Baptism of Hell thru Lyme disease. I should have asked the psych if she has seen her child in the middle of pools of blood and vomit from numerous suicide attempts. You change and are able to find some reserves that you never knew you had)

I had heard that they were not very ll..But I had no arguements. Actually I explained the non-positive CDC WB and had other labs with positive alternative tests. Handed out some literature to some.

The psych questioned my daughter about why she was refusing meds. After her super bug and yeast excuses, I also explained that an ER doc had told her she would never have any memory if she did not stop taking all of those meds.

The psych surprised me..She told my daughter that yes, most abx have side effects but that Lyme bacteria, especially if it goes to the heart is more dangerous than any side effects from abx. That it is a no brainer at least long enough to kill the bacteria. There is a good possibility that has never happened for my daughter.

The Dr. also said she was traditionally trained but in my daughter's case, recommened that she also try most of the alternative protocols available.

Also recommended the South Beach diet since it helped diabetics and did not feed the bacteria as much as a regular diet does.

There was some hope and meds offered and many suggested protocols. I will go into more detail later. Still recovering from the trip.lmt
Posted by bettyg (Member # 6147) on :
[group hug] [kiss] [group hug] lymemomtoo, my heart goes out to you that you continue getting bacd news, but glad you are finally getting answers whether they were the ones you have HOPED FOR or not.

just dealing with the truth helps. doess sound like she had a good experience this time, etc.

anytime you need to vent, pleasedo so here or send me a PM. having a hard time staying awake. went to bed 6 am. [sleepy]
Posted by SuZ-Q (Member # 5903) on :
Hello LMT,

I am glad to learn that the experience was positive for you and your daughter. I hope that any treatment protocols that were outlined will be helpful.

It is heart wrenching to see you receive more bad news, but I agree with Betty's sentiments that knowing the full extent of her condition is a blessing that will hopefully help you move forward with her treatment.

My heart truly does go out to you and your daughter. Having a teenage daughter who is going through some difficulties associated with this disease makes me feel a kinship to you. If you ever need someone to talk to, PM me and I will give you my contact info.

Wishing your family all the best,
Posted by lymemomtooo (Member # 5396) on :
Suzy, some of the new meds are helping. Thank God for that. I will take baby steps at this point. The change in diet may also be a big help.

I have heard music and a couple of thank you's.
Anger is gone. Outbursts are gone. No zombieness as in the past from most meds... AND there is a better level of cooperation. So these are miracles in our world.

And our Lyme Doc thinks that just seeing how bad it was has shock her into some degree of compliance with meds and protocols .So far, I think that has worked. Wish I could clone that llmd..
Posted by SuZ-Q (Member # 5903) on :

I wish I could clone her too. We'll be seeing her on Monday. Have lots of issues to talk to her about.

I am glad the meds are helping already. Hopefully, you will continue to see progress. It is so hard to watch your child suffer and turn into a person you no longer know and to feel so helpless to make any effective change.

It sounds like your visit was been a wonderful step in the right direction. I have been trying to talk my husband into taking our daughter to the A Clinic, but the price tag has been making him shy away from it.

Has Dr. C. said anything to you about Dr. W. and his neuromodulation techniques? That is another option we are considering, but once again I am having difficulty talking my husband into pursuing it. He seems to be skeptical of some of the things she suggests. Of course, I am ready to try just about anything and would probably do just about anything that she recommends.

Sometimes I just feel so lost trying to figure everything out. How do you manage to keep yourself together in the face of all you deal with? Do you have Lyme too? I do, but luckily my treatment has been going really well and I feel like I have made much progress. I wish I could say the same for my daughter.

I hope you continue to make new strides with the new meds.
Keeping you and yours in my thoughts and prayers.
Posted by lymemomtooo (Member # 5396) on :
Suzy, please give both of them a big hug for me.
Things continue to slightly improve, even though they made no promises to us, once they saw the whole picture.

The llmd has made great strides into figuring out other things that might work, ie alternative, supplements, etc. She has realized this is not a one protocol fits all.

From the baptism by Hell that we have lived with, I think teens are so much harder to heal. You're dealing with the bacteria, and a basket full of others, and hormones and attitudes. A miracle is so needed for these diseases.

Good luck. lmt
Posted by SuZ-Q (Member # 5903) on :

Would you mind if I ask which alternative protocols, supplements etc/ you are using and which you find the most useful? You can PM the info to me if you prefer.

Posted by SuZ-Q (Member # 5903) on :

Thanks for the PM, your box is still full, so I can't respond.

Sent your hugs to Dr. C. Had a good visit.

Made an appointment in June with A Clinic. I wanted to ask you what type of Lyme materials did you take with you? We may not have the same clinicians, etc. that you worked with and I wondered if there were any articles, pamphlets, etc. that you would recommend? Want them to be as open-minded to Lyme as possible.

How is your daughter? Still having positive results from new protocols? Sure hope so.
Are you taking care of yourself too? I know its hard, but take time out for yourself when you can.

Thanks & Best Wishes,
Posted by lymemomtooo (Member # 5396) on :
Suzy, sent you a pm. I have not had time to list more protocol ideas here because my husband has had surgery and in the hospital. Also, I am not sure it would be appropriate or legal and they should be supervised by professionals.

But my daughter has had definite improvements. She has a long way to go but there is obvious improvement in attitude regarding cooperation and rages and compassion for others. She is also communicating more with the family and has continued to play music in her room. It had been gone for months.

Yesterday she cleaned her windows and left the shades up. The room has been dark for a couple of years.

I am overjoyed but say so with caution. We have had hopes dashed before.

At least, we now know exactly what parts of the brain are not working properly and the total damage picture and everything that damage can cause. We also have pages of suggestions to help to make things improve.

I was given little hope and no promises since her case is so complicated and severe and she has been non compliant often..But so far we are very pleased. lmt
Posted by bettyg (Member # 6147) on :

keeping my fingers crossed that things will continue to be PERMANENTLY BETTER!

hope your hubby is doing well after his surgery; my your hands/stress level have been super high for a long time. putting you in my thoughts/prayers lmt! [group hug] [kiss] [group hug] [kiss] [Big Grin]

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