posted
Although I wasn't aware of it, it seems I have two accounts with LymeNet.
I have been posting here since Oct 2005, but I also have an account that is much more recent.
The account names are very similar, but I will post using this older account - Lymedad and delete the other (Lyme-Dad).
To update everyone that is interested; our daughter was finally correctly diagnosed w/ LD and 2 coinfections in October 2005.
By the Grace of God, an excellent pair of LLMDs, IV Rocephin, a 9 week HBO treatment and multiple pharma and homepathic protocols, she is doing remarkably well.
She is still living with us (at age 31) here in Southern CA. She is still on disability, but she has begun to put her life back together (baby steps you know).
Now it's Dad's turn.
It seems I have contracted Toxic Mold Poisoning (my terminology may not be quite accurate, but the symptoms are real).
I am currently undergoing multiple tests with one of our daughter's LLMDs (you just can't live without these guys).
He and I are about 80% sure I have been exposed to toxic mold.
I work in the property management arena and I know when and where I was exposed to the mold. Thank goodness it wasn't at our home.
I really appreciate the responses I received from my earlier post.
It will take some time to absorb all of the information, but I wanted you to know that I really appreciate your kindness.
I'll keep you all up-to-date on my progress.
Again, thanks for the support.
Lymedad
Posts: 681 | From California | Registered: Oct 2005
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Although everyone has their own opinion, I believe that our daughter's recovery so far can be contributed to the following;
1. Excellent care from two quality LLMDs (one an MD, one a ND)
2. 18 months of IV Rocephin
3. HBO Therapy (she had a 9 week course of twice-a-day dives at the HBO Clinic in Chico, CA)
4. Continued homeopathic and pharma protocols (to include oral antibiotics).
5. Most importantly her faith in God and prayers from family and friends, such as those here at LymeNet.
Her HBO treatments while doing IV Rocephin appeared to us to take her over-the-hump, so to speak.
Prior to those sessions, she had not shown any improvement (she was bedridden and in a wheelchair when she wasn't in bed; she was deathly ill).
There are many respected Lyme advocates (here at LymeNet and elsewhere) who won't agree with my impressions of HBO, but it is clear to us that it helped tremendously.
I do believe, however, that the timing of the treatment has to be right. Her LLMD made that call.
LymeDad
Posts: 681 | From California | Registered: Oct 2005
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bettyg
Unregistered
posted
howdy lymedad,
i don't have the link for your post but had saved the contents to share often with other newbes! but i want ALL to read this wonderful letter you wrote to FAMILY AND FRIENDS .... it's something they will pass along to others.
thanks for the update on your daughter and yourself my dear friend with 2 names ...
*************************************
Topic: Open Letter to Families of Lyme
posted 20-04-2007 03:52 PM
Dear Family of a Lyme Disease patient,
I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.
I am one of you.
For more than 6 years my daughter has suffered through this ugly, dark disease.
She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).
She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29).
She has virtually lost her 20's, one of the most productive and exciting time of her life.
We have taken her to every known medical specialist in southern California as well as three different General Practioners.
She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).
For the first 4 years of her struggle, I was not a good parent, even though I thought I was.
My daughter didn't have any outward sign of her illness. She looked "normal".
After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".
I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me").
Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.
You can't possibly be this ill and not have something tangible to show for your symptoms.
You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.
Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.
That's the way I approached her illness. It's time you took control of your illness and will yourself well.
I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.
My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant.
To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.
Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.
If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.
I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.
Hey they just can't help the way this disease treats them. It's not their fault.
We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.
They need our understanding.
If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.
Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease.
There are volumes being written on the internet as well as new books being published everyday on this disease.
We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.
My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.
She certainly doesn't need someone who claims to love her causing her any more pain than she has already.
Families, from one who has been in your shoes, please let them know you love them.
Let them know you're there to help them.
Let them know that there's no way you can possibly understand their pain, but that you wil try to understand their illness.
I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.
I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.
I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.
Sincerely,
LymeDad
***********************************************
prayers being sent to my good friend, lymedad, who is one heck of a dad to have written this letter and sharing with their family/friends.
if they can NOT BE SUPPORTIVE to his daughter, don't cause them undue pain for the awful pain we are all going thru now. WELL SAID my gifted pen writer.
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posted
Hi LymeDad - sorry to hear you're suffering - what about taking a look at Dr Shoemaker's book, "Mold Warriors"?
Posts: 13116 | From San Francisco | Registered: May 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
LymeDad,
Thanks so much for your answer, it is really appreciated.
I am keeping you both in my thoughts and prayers for your recovery and your daughter's better health.
I have found that recovery from lyme is a long road, and am very happy to hear about your daughter's progress. I have been doing well on long term oral abx, and my doctor has always recommended HBO for treatment as well.
Posts: 2557 | From home | Registered: Aug 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< LymeDad,Daughter and Family >>>>>,
Thank You for the update on Your daughter,it's Wonderful that she is getting better!!!!
I am sorry to hear of your illness,and will keep you and all your family in tho'ts and prayers.
Hope they can get the mold detox to work quickly and w/o serious side effects!
Just Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Hi LymeDad, I remember when I first got here, you were one of the people that stood out as being so helpful. I was lost and the confused and you helped me see the way.
I'm glad to hear that your daughter is doing better. It's a long hard road and people often say, I don't know how you do it, but sadly, we aren't given much choice.
As far as your toxic mold....I do hope the doctor's will be able to help you get on a protocol that works for you.
When they were trying to find out what was wrong with me originally, they told me I was allergic to "dust, mildew and mold". Doing all I could to avoid it, and it still never fixed my problem until the lyme diagnosis.
I know that isn't the same thing as "toxic mold" but as you can see, even still, my brain goes around in circles and my focus doesn't always stay where it is suppose to. :-)
In any case....good luck to you and glad to see your update.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
I think I'm getting a more personal idea what you Lymie's have been going through.
It's certainly not as bad as Lyme, but oh my, it's ain't pretty.
Lymedad
Posts: 681 | From California | Registered: Oct 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi Lymedad.
So glad to hear your precious daughter is doing better.
Now it's your turn to get to feelin' better too.
Sending you prayers for better health really soon.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
It's weird, Lymedad. I posted in this thread and now it's gone.
I have thought about you many times and wondered how you and your daughter are doing.
Hope you find a solution to your illness.
Posts: 2903 | From AZ | Registered: Feb 2006
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bettyg
Unregistered
posted
kelmo, you may have posted in his SUPPORT post
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Jus' me bumping up topics,and exploring...
Hope things are improving for you and Family Lyme Dad!
I'm looking for mold exposure info' now too!
Jus' Silvwewolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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