Both of my children ages, 13 & 15 have recently tested positive for Lyme. They have such completely different symptoms... I just dont know.
1) My 13 year old has suffered with lots of symptoms over the last two years. We did the DR to DR thing, chasing diagnosis until she was finally tested for Lymes. The original Quest lab work came back with a few hits, so thanks to a friend we heard about Igenex and sent her blood there. It came back as follows:
IGM 31++ 39 IND 41+++ 58+
IGG 34 IND 41++ 58++
She started her antibiotic treatment at the beginning of the summer (June) and has been horribly sick ever since! I hear about these "Herx" reactions, but thought they were only supposed to last a short time. The Meds tear her up! and we have to stop them for a week or 10 days at a time. She feels GREAT when she is not on the meds??? Dont understand that? Makes me think this isnt really Lyme? Her symptoms include: SEVERE muscle ache/fatigue!! (I mean really severe.. she was a very active athlete before this all happened) Mental fog, cant read a book or even tell time on a clock.-Weird occular migranes where she looses vision in one eye or both-for several hours. We did see a Dr who thinks she might have babesia as well? (I guess because of the brain problems).
It just seems that none of the meds are helping her??? She has been on a bunch for such a short time- IV rocephin, Coatrem, Mepron, Zithromax, Omnicef, Biaxin. Shouldnt she be feeling a little better on the meds by now?
2) Since my daughter was positive we decided two weeks ago to just test my son, to make sure he was okay. Shocker was his results came back from quest with 4 IGG's! 23 41 58 66
BUT!!! heres the real kicker! He has no symptoms??? except for also showing up that his white blood cell count is really low and his Neutrophils are really low? So for him.. is it really Lyme? He does of course have the normal "teenage" growing pains- pain in knees,and is really really tired all the time! But what teenage boy isnt? The doctor says he is worse off than my daughter? HUH??? how does that make sense?
Please help with any suggestions, comments you may have. I am really new to this-and finding acurate info seems really hard!
I am also trying to find a good LLMD in Florida/Georgia area. THANK YOU
Posted by gatorade girl (Member # 24896) on :
Some of the confections cause the white blood cells to be low. Sometimes it takes awhile for one to get better. It took 2 months of being on antibiotics to finally be able to lift my head up. Your son probably is not having growing pains....they are probably joint pains.
Posted by jjbc (Member # 27661) on :
It took you 2 straight months on abx- before you felt better? wow! did you get well quickly after those two months, or was it still a long process?
So would that be considered that you were having a "herx" reaction the whole time? I dont quite get the differnce between a herx reaction and just not feeling good to begin with?
Posted by gatorade girl (Member # 24896) on :
It's taken a year to get better, but two months to lift my head up. Still in the getting better stage. It is a tough disease.
Posted by lululymemom (Member # 26405) on :
I am not a doctor but I do have a daughter who was very sick with acute Lyme this summer. None of those treatments you mention seem like a first line of defense against this disease. I'm guessing your doctor thinks there are co-infections that have to be dealt with first.
Since co-infections sometimes present with the same symptoms as Lyme, I would think he would want to treat that with the standard protocol first. Just my opinion...
Posted by Pinelady (Member # 18524) on :
The real truth can come out in the treatment.
I did not get bed ridden until 3 mths. in.
I knew I was bad, but did not think I would get that bad...
Posted by jjbc (Member # 27661) on :
How is your daughter doing now? Did her illness come on quickly? My daughter had weird vague symptoms for a year, and then BAM! she got hit hard with the severe fatigue and sickness. She's just not getting any better. I understand that its only been a little over two months, but I was really looking for some improvement. I am trying to find a new Dr in my area.
Are you saying that he should be treating for Lyme first or for the Babesia first?
Posted by lululymemom (Member # 26405) on :
My daughter made a remarkable turn around 2 months after treatment started. Her symptoms started very suddenly and we diagnosed her within 8 weeks. She had no rash or memory of a bite. I thought her symptoms were highly unusual and I found her to have over 25 symptoms on the CanLyme website.
The first month on Doxy was absolutely horrible. She ended up in the ER many times. We then switched her to Ceftin and seen very little improvement. When we added a cyst buster (Flagyl) we started to see much more improvement. Finally adding a product for parasites really made the turn around for her. That was 2 months into treatment.
I have learned that all three forms of Lyme must be addressed in order to see a marked improvement. The bloodstream, intracellular, and cyst form. The parasite treatment is an added defense in this fight.
Now that I understand the disease, I finally feel that the dark cloud has lifted.
We do believe that some of her symptoms are related to Babesia so we are treating that now.
All in all, she is at 80-85% now. I just know that when she started treatment she was way worse than before abx. I was told it was a steady herx. I believe the Doxy did not agree with her.
It's a tough call on what to treat first when you don't have a positive Babs test, she didn't either. I think treating the Lyme is the best way to go and if that isn't helping after 2 months go after the co-infections.
Again this is just my opinion and the experience that we've had.
Posted by jjbc (Member # 27661) on :
THANK YOU so much for sharing that with me. I have tears in my eyes. I havent heard many success stories yet. All I hear is how bad and how long this goes on. Everyone keeps telling me she will have to live with this off and on the rest of her life. I just cant imagine.
THANK YOU so much for telling me what worked with your daughter. I know that every one is different. But I havent even heard of the things that you mentioned. I hope that I can find a good LLMD soon, and bring these things up. Wow.. dr never told me about the three forms of lyme.
I am so happy for your daughter, that she is doing better. I would take 80-85% better in a heartbeat right now! But she gives me hope!
Thank you again..
Posted by lululymemom (Member # 26405) on :
I truly believe that if you find the right combination and detox properly, you will see an improvement. She also take some supplements and which ever ones agree with her are the ones we keep using.
Always start low and slow with any thing you ingest and monitor carefully. Keep a diary and see if there is any improvement or if there are any cycles. Babs cycles every 4 to 6 days.
Try burbur for detox and herxes, it's really a great product! Just boil off any alcohol if you are taking a cyst buster.
I believe your kids can beat this thing and keep us posted on their progress. Posted by Pinelady (Member # 18524) on :
I think so too. Kids have not had the time to bio accumulate toxins that adults have so I do believe they can fight better.
Posted by 2roads (Member # 4409) on :
lulu,
Please, wipe your eyes and receive my hug.
I have been told by a leading expert that this is curable, especially in children. They do have an advantage because they are still growing and it is harder for infections to settle in somewhere and remain there.
Plus, they are more active and heat kills bacteria.
In younger children, better sleeping and life style habits help out too. The older they are, the less they listen to their bodies needs, or to us.
There is hope. First off, you know they have a Tick-borne infection. Go over to the Lou Gehrigs post, and you'll realize what an accomplishment that is.
I agree that you need a good LLMD which would be someone ILADS trained.
Seek their help for coinfection testing and TBI treatment.
The feeling of doing something about a problem, no matter how challenging it may be, always brings a greater sense of peace. I believe it's down hill from here.
Besides, I think we're a great group of people...you've come to the right place. WELCOME.
There's some pretty funny threads in Off topic and General if you need a laugh Posted by momindeep (Member # 7618) on :
jjbc,
I agree with pinelady...I think kids can recover because they are less toxic...
The good news is that you KNOW your kids have Lyme and can take action now. This is a big deal because you know what you are dealing with.
Second you have great support here and can learn a lot in a short amount of time.
You are on this! Take heart that your kids will get better, it takes time.
Growing pains is bogus, they tried that excuse with my thirteen old daughter ten years ago...don't fall for it.
My daughter's doctor says that there can be a healing crisis while doing treatments. (Worse before better.)
Posted by nspiker (Member # 22824) on :
It sounds like your doctor is trying different treatment protocols, but is not an LLMD. It is critical to get in to see an LLMD, or at least have your doctor consult with one. The reason is, experienced LLMD's know what to treat FIRST. If she has babesia, most LLMD's would treat that before lyme. Babesia is a protozoa/parasite, like malaria, and requires different medication completely.
Mepron/zith is a babesia combination, so it looks like your daughter has tried some of the babesia combo. I don't understand what direction your doctor has gone in two months of treatment? How long was she on each medication? It seems like a bunch of antibiotics in a short period of time. I have babesia and have been on Mepron/Zith/Tindimax for eight months straight and have slowly improved.
There are many reasons why your daughter may feel worse, before she feels better. Sometimes it's a herx reaction, but often it is due to killing off the bugs and not detoxing enough. Detoxing is critical. Detoxing can prevent the toxins from building up, which can bring on all of those sick feelings.
Given the right treatment, your daughter will improve. Especially given that she is so young. Your son may not even need treatment; an experienced llmd can guide you in that respect.
Posted by lululymemom (Member # 26405) on :
I agree children seem to bounce back alot quicker than adults. I also have to say that my daughter is 25 and doing very well. So it's possible adults can have good results as well. Posted by 2roads (Member # 4409) on :
Sorry lulu, I meant to address my post to jjbc, but you can have a hug too. Posted by blinkie (Member # 14470) on :
You may also get her thyroid tested. She may need adrenal support as well. This could help her feel better more quickly, at least with the fatigue.
But, overall, she will feel worse before better. i was sick for years before treatment and it was 1.5 years and a pregnancy later that I started to see big strides in feeling better. Now, I'm 90-95% well.
Posted by lululymemom (Member # 26405) on :
No worries 2roads.. I can always use a hug.. Posted by TerryK (Member # 8552) on :
jj, Some people are infected but are asymptomatic. It's a fact according to reputalble sources but I don't think all the reasons are understood. That said, it sounds like your son is not symptom free.
Being tired after a lot of extra activity is normal but being really really tired all the time is not, especially for a teenager.
Many of us were told that we had growing pains as we grew up with lyme disease. I think it is a convenient cop out.
I agree with gator, the low WBC could be a co-infection.
I wrote about some of the issues that could be part of your daughters problem in another thread so I won't include them here.
I'm so glad that you found out now what is wrong with your children. I grew up with untreated lyme disease which was a relapsing and remitting illness for me. I feel like I lost most of my life to lyme disease. All of my siblings are sick and treatment is not possible for 2 of them. They are both in kidney failure. Please take care of this now rather than waiting. A good LLMD will be able to help your children.
Good job of getting it figured out!!! Your kids don't know what a great thing you have done for them.
Terry
Posted by Karen Mc (Member # 23354) on :
Hi, First off i am so glad to hear you are getting treatment for your children. I was diag. with lyme and co-infections of bart and babasia in April 2009.
My son who just turned 18 in May has just been tested and is positive as well.
I just wanted to add that I to, like you thought he was just having "growing pains" for the last couple of years but after being diagonized and learning about symptoms I consulted my LLMD and he assured me children DO NOT have growning pains and it is NOT natural for them to be fatiqued...He (Dr) said they (children) should be active and in the prime of their lives.
This prompted me to get my son tested and low and behold he tested positive.
Of course, there is a part of me that feels like I was a "bad" parent for not catching it...but then of course I realized that I had no way of knowing and just thankful that the Lord gave me the the knowledge to figure out what we had and start treatment.
I wish you and your family the very best of luck!!!
God Bless,
Karen
Posted by jjbc (Member # 27661) on :
Thank you SO VERY MUCH to everyone who has responded to my post. I am soooo overwhelmed by the wonderful reponses I have gotten here at this site! It seems like nobody where I live- or friends and family- have any clue what I am talking about. And here, everbody gets it!! (not that that is really a good thing)
From posting on looking for a Dr I rcvd wonderful info from someone who I wish I could just HUG! because of this person- I think I have located a LLMD, they are even taking my daughter on Monday as a new patient! Couldnt get my son in just yet, but they are working on it.
Knowledge is power, and I soooo appreciate everyone sharing their knowledge with me. I have learned so much in just a couple of days! THANK YOU ALL !!!!
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