Topic: Need support..no improvements have lasted..can't take it
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I never post here and am embarrassed but I need support. I've been sick 5 yrs since I had a baby. Saw the best Lyme docs, did 3yrs orals and pulsed IVs.
Quit abx cold turkey in May to try Rife and others. The orals just weren't working.
Doc always said bartonella was my dominant infection/s, I never doubted him from my symptoms. They are right out of DrBs list.
My problem is I just don't seem to respond to anything. Early in treatment I did; I got so well in 2006 I thought I walked away. Then it was like my immune system just went dead. I would still herx but it was like my immune system wasn't seeing the infection and fighting. My immune function tests are all low. My C4a instead of being elevated like most Lymies, is low , not good. I just started taking transfer factors and am open to going back on abx but what good will they do?
I have tried HBOT and LDN, abx and herbs, rife and MMS. I have had days of 90 percent but they don't last. I tested highly positive for KPU so am ramping up on that.
I got approved for IVIg I'm thinking this is my last shot, stem cells. I can't live much longer with the incessant Bart symptoms. I have thought about suicide but I can't I have a small child. What do I DO?? I need an immune system to fight! I never get colds or flus either.... Pls help!!
Posts: 3528 | From US | Registered: Apr 2007
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IVIG sounds good, and why not go the Bartonella and Babesia specialist in Florida. Don't give up. Maybe a different LLMD, one with lots of experience could figure it out. My LLMD is a internist. I am not sure what that means but it sounds like he would know more than the average doctor.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Sending you a hug.....
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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posted
Well first of all put the embarrassment away. You have nothing to be embarrassed about.
Asking for support here is a good and positive thing.
And regarding your thoughts about suicide, God Bless You. You clearly realize this is NOT an option for you especially given that you have a child. Please hang onto that thought.
You have reached 90% on some days. Hang onto that thought as well. 90% is a homerun in Lymeworld. You will get to that point again.
Bart is tough. But remember that you are tougher. Continue to ask for input from your LLMD and people here.
You obviously have been through the mill: HBOT, LDN, Rife, herbs, abx. And MMS whatever that is (sorry but I forget).
Since you got approved for IVIG, go for it. You have nothing to lose and maybe something to gain.
You might live a lot longer than you think. Don't invest yourself in all the crap you read.
I'm pretty much an old can that's been kicked to the curb over and over again.
If I had a nickel for every time I thought it was over for me, I'd be a nickelaire (OMG, am I funny or what).
Seriously though, you can't submerge your being into the vat of "the opinions of others"
Do what you think is best for you.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Dear CD57,
Thank you for coming here for support. We all need it.
The fact that at one point you did reach 90% seems very hopeful to me...you know it can happen.
You are faithful and courageous to recognize that suicide is not an option.
Make sure you are doing everything you can for your mental/emotional support...including antidepressants if you are not on one or need a change in meds.
You could consider getting a new opinion from a different LLMD, even if yours have been very good.
Did you do long term Babesia treatment, even though you don't mention Babesia symptoms and feel that Bart is dominant?
Did you also take antivirals?
God must have much bigger plans for you. What that plan is, just hasn't been revealed yet.
You will be rewarded for your faithfulness, suffering and perseverence.
Never lose hope. There is always hope.
Come here often. We will support you.
Lord, please lift up CD57 and wrap your healing hands around her.
Guide her in the direction that she should go with her treatment.
Give her the hope that she needs to make it through each day.
Help her find the strength she needs to meet her responsibilities.
Carry her when she is weak, and fill her with hope in each new day.
I pray this in the name of the Father and of the Son and of the Holy Spirit. Amen
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Wow ! That is great that you have had 90% days!
I haven't had a 90% day in 2 years. My days are 5% only.
Don't give up. Keep trying and keep educating yourself.
I heard great things about IVIG.
Let us know how you do.
PM me anytime if you need! This place is the only thing that keeps me going sometimes.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I am sorry you are in such despair. I have been there myself. Five yrs ago, I am pretty sure I was leaving this planet. I was in pretty bad shape after 4 yrs of abx.
I was dx with bart, babs, erlichia and Lyme. I found the lymephotos site and the salt/c protocol here on lymenet and decided I had nothing to loose. I was desperate!!
The salt/c protocol saved my life and gave it back to me. The high dose Vit C really helped boost my immune system. My B cells were down and I did receive IVIG before that.
Wondering if you would consider trying it? If so, and you need help let me know. Just don't give up! There is a way out. Sending you lots of prayers.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
hang in there!! I hope you can find something to help your immune system. This constant battle sure can wear you down.
When I was at my worst and having bad days, I tried my best to find a distraction - something joyful. That in itself should be an immune system boost, right?
Posts: 227 | From Northern CA (bitten in Illinois) | Registered: Jan 2008
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posted
Hey, how is your detox? I also think that the fact you had good days is a very good sign. but then you also have to help your system and detox, how about your diet? how about your stress level?
Posts: 723 | From Montreal | Registered: Oct 2010
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