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I am seriously in need of help.. dont know what to do??

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I am seriously in need of help.. dont know what to do??

Postby UnexpectedIlls » Mon 4 Aug 2008 16:09

I have posted here a couple of times....I have also been posting on LNusa for a couple of months. I have made some very good freinds there and I am happy about that!! BUT I am seriously in need of help and I don't know what to do, where to turn?? I feel like I am lost in the middle of the ocean .... no one around me to help. :(

I am 25 years old.. and I am very very ill... I do not know WHY I am this way or WHY I am not getting better... but I do know that I am VERY scared for my life.

I was a normal, healthy and very active person before the birth of my daughter. I was never an ill child or rarely ever sick as an adult. I am a mess... I am at a loss and I sometimes feel like it would be easier to just jump off of the bridge. I know that sounds crazy but I am desperate for answers and desperate for my life back... a life that was stolen from me overnight.

I became pregnant with my daughter in 2006. I immediatley got very sick when I became pregnant and it was just blamed on hormones, but I had had a child before and never went through this. My pregnancy was miserable, and very scary to say the least. I knew something was not quite right with me but didnt know what it was. By the 3rd trimester of my pregnancy I was bedridden with so mnay symptoms, it was absolutely the scariest time of my life. My heart was racing 24/7 and I was hospitilized many times, I could barely walk and had the most severe stabiing headaches... among other things...

ANyway to make a very long story short when I gave birth EVERYTHING got worse immediatley and I have
never been the same since... I have been so sick to the pint of bedridden and unable to function at all. SOme days I need to be walked to the bathroom becasue I cannot walk myself, I have over 50 symtpoms and they are so scary. ALl I did was have a baby... how could this happen??

I have been to MANY doctors, many ER's, Many specialits, but all the time too sick to even go to a doctor... thats how bad I have been since giving birth. I mean seriously over 50 symptoms that will not leave me since over a year ago. I am so scared I will not be here for my children, and my life is over.

I have had every dx in the book, but all the while still no one knew what was wrong. I started researching when I could and came up with lyme, as it seemed the only real thing that fit all my symptoms and I am pretty sure I had all but 2 on the list :O

I had a positive WB in May 2008 after almost killing myself on the Marshall Protocol because I thought it was going to be my saving grace.... I was despersate for answers and desperate to get my life back. I tried all kinds of treatment.. and I didnt even know WHAT I was treating. Now I have this positive IgG wb for bands 18+ 28+ 31++ 41++ 45++ 34IND 39IND

I have been on abx since May, and although I am NOT completely bedridden anymore... ISTILL cannot function and STILL am very sick and deal with all those symptoms on a daily basis. I can't do anything, my life has been taken away and I am 25 years old.

I am ANGRY that I wanted my daughter more than anything and I have never had a day of being able to enjoy here or take care of her. I cant take her for walks outside, or mommy play dates... I get to watch her grow from my bed, its just not fair and I cant take it anymore.

This message is a plea... a plea that I have been putting out there for months.... I dont know what is wrong with me and why i am so sick... I dont want to die, but I feel it everyday, I feel my time here is limited and it scares the shit out of me... I just want to be here for my kids. I just want to live, I just want my life back.

How can someone get this sick from having a baby... it doesnt make ANY sence??? NO one knows the answers... do you know how scary that is?? No one can tell me what is wrong, or how this happened... WHY??

All I did was have a baby.... ALL I did was have a baby.... This will never make sense to me, and while I am sitting here wasting away.... ALl these doctors are going on with their lives and home to their families while my family is struggling to keep me alive...struggling to know what happened to their Shandy.

I am nothing of the person I was. I was an adventurous person, I was involved in so many activites, always on the go , a dreamer, a go getter, A person people loved being around..... I am nothing now. I am a blob of wasted life in bed or on the couch wishing for a life I used to live. Praying everyday and not being heard. Screaming in fear, anger, and despair.

The money that has been wasted, the tears my family has cried over this... What the hell is going on??? WHy can no one figure out WHAT is wrong with me?? Why am I not seeing ANY improvemnt over something that started over a year ago??

Can someone PLEASE PLEASE help me Or GUIDE me.. please... I am begging for help .. I dont know where else to turn anymore...

Sincerly,
UnexpectedIlls
 
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Re: I am seriously in need of help.. dont know what to do??

Postby itsy » Mon 4 Aug 2008 16:44

As I have told you before, giving birth took me from relatively speaking mild disease to disability. I was just turning 27, so I feel your pain. But I made it to almost 38 now...

Lets back up...
I have no doubt from your WB that you have Lyme Disease.

In trouble-shooting, we break things down to the lowest common demoninator. We will do that here, too. We will keep in one thread cause i get confused with different people and tests and what they have/don't have.


What are you on...everything you are on right now?

What else have you been tested for? (Don't tell me 'everything'...I know its tempting...)

Do you keep copies of your tests?
itsy
 
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Re: I am seriously in need of help.. dont know what to do??

Postby cave76 » Mon 4 Aug 2008 16:58

unexpected,

What a poignant call for help-----breaks my heart. :(

To start------ you're on abx. IF it's the right one(s) for you, you'll get better.

It may be slow. Snails pace slow, with many ups and downs.

If the abx tx's you've been on haven't helped much---- perhaps it time to try a different one.

One thing you didn't say----- have you been tested for tick co-infections? And treated for them? That 'may' be why not too much forward movement. May.

Your thought
I am so scared I will not be here for my children, and my life is over.


Although that seems to be true 'at this moment' I can only tell you there's not many of us who haven't had the thought that we were going to die at some point. Or wished for it.

That was a very real thought in MY mind for a long time, in the beginning years.

How to explain? I can't. :( But the closest I can get is what others say too (after those thoughts are gone) is------ it's the disease messing with your brain and mind!

There's no study about that. But I know it's true. Try to keep that as a mantra in the back of your mind while going through this. And you WILL get better----- as long as you keep on doing the only thing that, at this point, is the best thing----- tx with antibiotics, different kinds, different doses.

Adjunctive methods may be useful also, but never to replace or interfere with the only treatment option we have now---- abx.

Now, for the hard part: You've only been in treatment for a comparatively short time, in TBI talk. I know. That's the hardest thing to accept. But it's true! Never doubt that.

You ask why you're so sick. It's a disease that has come (maybe set off by the bodily stress of pregnancy, maybe not) and knocked you ass over teakettle.

It's VERY difficult to treat in some people. (Like me.) Co-infections, named and unnamed, abound. Tests are crappy. Treatment seems to be hit or miss.

Please keep posting your fears. It helps. No one thinks the less of you for that. And if they do------ they they didn't have a bad case of neural Lyme and are talking out of theie asshole.

So----- on line or privately. Keep talking. And it breaks my heart to hear this.
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Re: I am seriously in need of help.. dont know what to do??

Postby UnexpectedIlls » Mon 4 Aug 2008 17:07

Thank you so much Itsy!!!

Ok I I will hold back!! :)

I have been tested for Lupus (had a positive ANA but all other lupus tests Negative)

than they thought I had Sarcoidosis because I had an elevated ACE (which has been normal since) but no lung issues and had 7 chest xrays and 2 CT chest scans... Normal

than they thought I had Rheumatoid artritis because I have a VERY high RF but all other RA tests NEG (anti-ccp) No swollen joints or redness.

I have had tons of Xray type testing... on virtually every part of my body...Normal

MRI/MRA/MRV with contrast of brain and neck ---normal from last May, BUT never seen the repost myself

All my blood work is out of wack... ANA is now negative but still have high WBC's and RF

In the process of testing for co-infectons and more virus..through quest though... cannot afford IgeneX to test.

Tested for EBV, CMV, and other virus's... negative on all except an old EBV infection on the IgG. I had mono at 14

I was on the Marshall Protocol from Nov 07 to May 08

May 08 tested positive for lyme though igenex

May 08 started on Doxy--- felt terrible on it-----stomach issues

June 08 started on Tetracycline and zith---good response that laated about 2-3 weeks and feel back again hard

July 08-- Plaquenil, Zith, Omnicef------I am not noticing much of anything.

ANd I left a lot out.. I have been tested for so much crap.

I basically get copies of all my medical tests.

Thank you!!!
UnexpectedIlls
 
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Re: I am seriously in need of help.. dont know what to do??

Postby Claudia » Mon 4 Aug 2008 17:10

I have heard of others who got very sick with Lyme symptoms after giving birth.

I can tell you that it took my son a good six months into antibiotic treatment to turn the corner in beginning to regain his health. He had gone four years infected and untreated. Physically, he got much worse before he got better. It was a step forward, a couple of steps back, two steps forward, one step back and eventually he began having more good days than bad. Then many more good days than bad.

It helped to keep a daily diary or log of his main symptoms, noting which seemed better and which seemed worse. It helped us to see the flares/herx cycles, and to realize that he was really, overall, making progress and getting better and not to get discouraged when he had those bad days and periods. We could see the general trend was improvement.

I remember so well when my son was diagnosed, right before his 18th birthday which is in October, and I thought "great, a month of strong antibiotics and he'll be back to normal" and that he'd be able to start college a semester late, in January for the spring semester. Then the doctor burst my bubble and told us not to think about him starting anything for "at least a year" and I couldn't believe that that could be true! Well it was true. My son basically spent the next six months in bed.

If your diagnosis is correct and you are on the right antibiotics, it can be slow going, but you will/should get better, but it can take months and months.

I very much feel for you. You have adult responsibilities and a baby. My son was able to just be a patient and sleep as much as he needed, which was 16-20 hours a day, for a good part of the first six months into treatment.
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Re: I am seriously in need of help.. dont know what to do??

Postby UnexpectedIlls » Mon 4 Aug 2008 17:17

Cave 76

We must have been posting at the same time!!

Thank you so much... I appreciate your encouragemnt. I know you all know how very lonely this can be. I have a wonderful fiance who takes care of me everyday.. but he is also lost and just as confused.

I am in the process of getting tested for co-infections because the first time I was tested it was negative through QUest Labs... I am getting tested again through them I just cannot afford Igenex.

Thank you again... I hope I can get this figured out
UnexpectedIlls
 
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Re: I am seriously in need of help.. dont know what to do??

Postby itsy » Mon 4 Aug 2008 17:32

UnexpectedIlls wrote:Thank you so much Itsy!!!



I have been tested for Lupus (had a positive ANA but all other lupus tests Negative)

than they thought I had Sarcoidosis because I had an elevated ACE (which has been normal since) but no lung issues and had 7 chest xrays and 2 CT chest scans... Normal

than they thought I had Rheumatoid artritis because I have a VERY high RF but all other RA tests NEG (anti-ccp) No swollen joints or redness.


I understand that many lymies become positive for these things at some point. I have never had one come up, but even steere did a study on ANA and RF being positive I think. ACE can get elevated for a lot of other reasons. That it is normal now probably means it wasn't really indicative of anything. I do have swollen knees and so forth. How about SSA/SSB antibodies? I would have this one done if you have not had it yet. Its for another autoimmune disease often caused by Lyme called Sjogren's Syndrome. Could add to your misery if it is positive.

Simply having RF antibodies could add to your misery because it means your immune system is on patrol. Really wears a girl down.

Hypothyroidism/Hashimotos?

I have had tons of Xray type testing... on virtually every part of my body...Normal

MRI/MRA/MRV with contrast of brain and neck ---normal from last May, BUT never seen the repost myself


Sounds like me. I was soooo normal for soooo many years on paper. It was frustrating because I knew I was sick.

All my blood work is out of wack... ANA is now negative but still have high WBC's and RF

In the process of testing for co-infectons and more virus..through quest though... cannot afford IgeneX to test.

Tested for EBV, CMV, and other virus's... negative on all except an old EBV infection on the IgG. I had mono at 14


I have never tested through igenex either. One reason is the price. Two, I tested positive through labcorp so there really isn't a reason to do an IGENEX test.

I was on the Marshall Protocol from Nov 07 to May 08

May 08 tested positive for lyme though igenex

May 08 started on Doxy--- felt terrible on it-----stomach issues

June 08 started on Tetracycline and zith---good response that laated about 2-3 weeks and feel back again hard

July 08-- Plaquenil, Zith, Omnicef------I am not noticing much of anything.

ANd I left a lot out.. I have been tested for so much crap.

I basically get copies of all my medical tests.

Thank you!!!


OK...now, I had my best results on tetracycline and minocycline. I believe tetra hit it the hardest.

Keep in mind, there is no magic bullet for one abx fits all.

I would ask for an immume profile (overall igg/igm/ige/iga)
I would ask for mycoplasm pnemonia titer
I would ask for FT3/Ft4 thyroid tests with your TSH...more indicative of underlying disease, and possible in your case to have underlying T3 conversion problems
Co infection profiles
Ferritin and Transferrin with FE even if your hemoglobulin is normal.

Some people ARE very sick from Lyme. Sometimes it takes a long time. Sometimes anibiotics themselves can have SUCH devastating side effects you can continue to feel VERY crappy while getting better.

On marshall did you do low dose minocycline??

I know what it is like to be sick and scared. I know what it is like to feel like you have let your kid down, and that you are missing stuff. I do know. And it makes you feel like you are going to suffocate.

Keep the faith.
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Re: I am seriously in need of help.. dont know what to do??

Postby LymeEnigma » Mon 4 Aug 2008 20:58

I have no advice or insight to add; I just wanted to say I hope you get it all figured out and feel better soon.
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Re: I am seriously in need of help.. dont know what to do??

Postby Yvonne » Tue 5 Aug 2008 9:02

It hurts that you can't do the things with your baby that you like to do.

I know from my own experience how difficult it is to turn in ever again.

And how despondent you sometimes can be.

But not lose courage. You'll see that there will be times that things will go better.


Image
Listen to all,
plucking a feather from every passing goose,
but follow no one absolutely
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Re: I am seriously in need of help.. dont know what to do??

Postby UnexpectedIlls » Tue 5 Aug 2008 15:19

I appreciate all the responses I have gotten!

Claudia-- I am so happy that your son is getting better!! That is wonderful and also very encouraging!

Itsy-- I have had those tests already... I think they tested me for all the "autoimmune" stuff like Sjogrens, RA, Lupus, Scleroderma, and some other weird ones I know not too much about. Everything was negative. I am getting the results of my newest thyroid panel on the 7th.... We'll see! Thank you so much for always helping me out!!

LE--- Thanks!

Yvonne--- I needed that hug, Thank you!!! :)

Thanks everyone, I will be seeing my LLMD on thursday and pretty much going to see what kind of plan we can come up with.....
UnexpectedIlls
 
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