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frikandfrak
Regular Member


Date Joined Jan 2010
Total Posts : 22
   Posted 1/28/2010 6:49 PM (GMT -6)   
my son (19) as lyme, all bands tested positive. I tried to post previous but think I messed, never did this before. I'll write more if this works and someone answers. thanks

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/28/2010 6:51 PM (GMT -6)   
Hi frikandfrak,

Welcome to the forum! You did a great job posting:) I saw your other post, so I will reply here. I can tell you from experience that Lyme does affect the brain and can cause mental issues. If he had positive bands, he definitely needs to see a LLMD. Please keep that appointment so that he can be put on the right dosage and medication for this disease.

Poor thing. I really feel for him. It's so sad that he has to go through this. Don't give up, he can get better with the right treatment.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


frikandfrak
Regular Member


Date Joined Jan 2010
Total Posts : 22
   Posted 1/28/2010 6:55 PM (GMT -6)   
thanks, is the laughing "normal". he thinks he's fine. Very angry because we won't let him drive and he's been out of work since middle of Dec. All the symptons listed for late stage he has: fogging mind, confusion, forgetful, and so on
thanks SO MUCH for answering me, my family listens but they have NO IDEA what we're going thru.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/28/2010 7:30 PM (GMT -6)   
I've never heard of laughing uncontrollably but I'm sure it could happen. Make sure he is checked for all co-infections too, especially Bartonella. This co-infection can cause alot of mental problems.

Also, read the newbie link titled, "New to Lyme?.....Start Here!." It has some very informative information to help you and your son on your Lyme journey. It is located on the Lyme page, at the very top of these threads.

It is very hard when family doesn't understand. This bacteria causes so many symptoms. It is easy to label someone mental. I suggest you purchase the DVD "Under Our Skin" and let your family watch it. It will explain so much.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bablymers
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Date Joined Oct 2006
Total Posts : 1458
   Posted 1/28/2010 7:31 PM (GMT -6)   

Hi frikandfrak,

Welcome to the forum!   I am sorry your son is suffering and I hope he gets the help he needs soon.  I know this is hard on the entire family.   My daughter is 19, too, and the two of us have been battling this disease for over 3 years, but have had it much longer than that.  We understand what you are going through.  The symptoms of lyme are numerous, varied, seemingly endless, and "all over the place".  You will learn a lot as you read this forum and do your own research.  Be prepared for the "long haul"---there is no guarantee of a "quick fix".

It is fortunate that your son's test proved he has lyme.  It would also be a good idea to ask the llmd to test him for other "coinfections" such as babesia, bartonella, ehrlichia, mycoplasma, rickettsia etc. and also for heavy metals and mold toxins.  These types of conditions often accompany the lyme and will have an influence on the type of treatments given.  Sometimes, the more stuff a person has to "battle", the longer recovery can take.

You can start learning about lyme by reading the topic at the top of the first page of this forum, entitled "New to Lyme, Start here".  You will find it helpful.

Learn to be your son's advocate and pay attention to his symptoms (keep track, write them down to tell doc).  Sometimes it is hard for us to know the difference between a reaction to medication vs. a disease symptom.  Lymies can become unusually sensitive to things and it will affect their behaviour and symptoms.  I'm not sure if the laughing is a response due to the disease or the meds he is on.  Let his doc know.

Our best wishes to your son, to you, and your family,    the bablymers family


frikandfrak
Regular Member


Date Joined Jan 2010
Total Posts : 22
   Posted 1/29/2010 6:12 AM (GMT -6)   
Hi,

thanks for your response. I think the laughing is due to the paxil but his regular MD still thinks he should take it. We have an appt. with an LLMD on 2/19 -- CANT WAIT. He has gotten more blood work (thru LLMD) results not back yet, they took alot so I'm sure they're testing for everything. I do feel fortunate in the way that this all started 12/14, literally overnight so we are trying to get him the best help ASAP. I have been all over the web since then and have read some terrible stories. The regular MD thinks this is not lyme because since he's taken the standard 4 week treatment (200 mg. dioxy per day) and he's not better then it must be mental, any thoughts? I can't believe his mind went literally overnight, believe it or not I'm hoping the blood test proves this is lyme doing this so at least we know what we're dealing with. Otherwise what?.....mental health doctors I guess.
Good luck to you and your family, I wish all the best.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/29/2010 9:30 AM (GMT -6)   
Hi frikandfrak,
love your screen name :) Welcome to Healingwell!! Sorry to hear about your son.
You have recieved some very good advise already form bablymers, and CajunGrl
One thing I noticed you stated was your son is on 200mg of doxy a day, and if he's not better then it must be mental.
I would not agree with this statment. Treatment for Lyme disease, and co infections is not quick. Your LLMD should help you to better understand the difficulties in treating this disease.

Best wishes.

Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 1/29/2010 10:43 AM (GMT -6)   
frikandfrak

Welcome to the forum. Not sure what all symptoms your son has, but I had alot of what I called mental problems.
The uncontrollable laughing came when I was extremely tired and could not sleep. Alot of my so called mental lyme
went away with IV Rocephin. It crosses the blood brain barrier which within a week time I could think much clearer
I could carry on somewhat of a conversation. The pain in my body was minimal, all my lymph nodes were no longer
swollen. I could walk again without trouble of running into walls or falling downstairs. I truly feel in my opinion that the
IV Rocephin was my lifesaver in the beginning. I am not fully in remission yet but getting there.

Find a good LLMD and hope your son gets on the right track with treatment...
 


frikandfrak
Regular Member


Date Joined Jan 2010
Total Posts : 22
   Posted 1/29/2010 11:26 AM (GMT -6)   
thank you Harleyrider. My son seems to only have the mental symptoms, but sometimes I do notice things, like when he was having trouble with his eyes, he says he feels fine otherwise. I will definitely keep everyone posted. Won't know anything really until we see the LLMD in February. Trying to get in sooner, we'll see. Take care

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/29/2010 7:43 PM (GMT -6)   
The standard four week treatment of Doxy at 200mg a day was probably not enough. Lyme Disease is very complicated and most times takes longer to treat than four weeks. I know this is probably very overwhelming, but reading and getting yourself educated about this disease is what's going to help your son.

Here is a great site to start reading:

www.ILADS.org

I'm so glad he has an appointment with a LLMD. They are trained in so many areas, including viruses, so he/she should be able to figure it out.


**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 1/29/2010 8:38:00 PM (GMT-7)


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 1/29/2010 8:07 PM (GMT -6)   
Hi frikandfrak,

I agree with the opinions above----the short treatment with Doxy may not get rid of all the bacteria and just because your son has not improved does NOT mean it "must be mental". The borellia and bartonella bacteria can be in the brain and cause mental and neurological symptoms. Toxins in the brain can contribute effects also. I hope your son gets all the help he needs. While psychiatrists that Understand lyme can be helpful with some meds, a llmd is Extremely important to manage the meds that treat the CAUSE ("germs") of the illness.

Best wishes to all you, bablymers mom

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/29/2010 9:40 PM (GMT -6)   
Babylymers mentioned toxins and it reminded me that doing a detox bath may help ease some of your sons symptoms. All you need is epsom salt, hydrogen peroxide and a dry brush to brush the skin before he gets in. Look at the thread titled, "New To Lyme....Start Here!" The very first post is about detoxing and everything you need.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 1/30/2010 7:21 AM (GMT -6)   
Hi frikandfrak,

My son (now 25) was diagnosed with Lyme when he was 13 (swollen knees), treated with 30 days IV abx and declared cured. The symptoms came back the next year and again he was treated with 30 days abx., and again said to be cured. The following year he started having tonic clonic seizures, which the doctors told me was epilepsy and started treating him accordingly with ever increasing doses of anti-seizures meds. Six years later, at age 21, he started hearing voices, he couldn't find his way home from a mile away, and he became almost catatonic. After testing for Lyme at 3 hospitals, two of which were major teaching hospitals, we were told that he absolutely did not and could not possibly still be suffering from Lyme Disease. When we got copies of the tests, we found that they were all CDC positive for Lyme and said that on the tests.
His symptoms escalated to the point that he could not get out of bed, could not tolerate noise or light, had to have ice packs surrounding his head, but had 7 blankets on the rest of his body, he was having full tonic clonic seizures every 2 days and would cry uncontrollably and scream that he was losing his mind. We were told he needed a psychiatrist. Psychiatrists were totally useless, because they had no clue what was going on --- they would shove pills at him and say "try this". Some made him worse, some didn't do anything.

Long story, short --- after 3 1/2 hears on abx, both oral and IV, he is doing a lot better. The lyme has caused a lot of problems with his immune system and he currently getting weekly infusions of immunoglobbulins, along with accupuncture and Naet for his allergies which were also caused by Lyme.

If you can get him to take the epsom salt baths, they can really help. If he won't do a full bath, try a foot bath with the eposm salts. I understand that he thinks he's fine and probably won't want to do either. Finding a lyme literate psychiatrist is also a good idea.

Please know that I understand what you are going through and if I can help in any way, or if you just want to talk to someone who's been there, please Email me by clicking on my username. I will keep you and your son in my prayers.
Take Care,
Karen
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