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Two day Stay in the hospital , and very frustrated

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Posted 12/29/2012 12:37 PM (GMT 0)
So the doctor put me in the hospital, and ran test after test. I had Mri, ECG, I don't even know how many blood test. My body was twitching since I had the Lyme, the nurse was calling them many seizures. All the brain test came back neg, and my lyme test came back very low this time.

The doctors said well you had Lyme but it looks like your body , and the three months of doxy has fixed you. I wanted to scream one doctor said maybe you have mono, because he had never seen anyone with Lyme shake like I do.

The only positive thing that came out of all of it, was they did a western blot test on me, we do not have the results on it yet, as it takes a few days to come back. I am very frustrated, I am not Fixed by any means, also one doctor tried to blame it on the herbal medications. I said wait, it was worse before the herbal meds, at least I can get out of bed now. I am to followup with the main doctor who said he would treat me for Lyme if the western blot came back positive. I am at a loss for words, I don't know what to do anymore. I think people are going to die if doctors depend on blood test to treat a person.
.
Also on the information packet they sent home, it said on there late stage lyme is hard to detect on a blood text, most test for lyme are wrong.

I think I will have to find a LLMD, and real one, because this is getting me no where fast
Posted 12/29/2012 12:39 PM (GMT 0)
I forgot my questions, where do I go, or how do I get tested for co infections? Where would I get a test from? I want a accurate Lyme test, and co infections test. I will do some research myself, but if anyone knows, please let me know.

Thank you.
Posted 12/29/2012 2:24 PM (GMT 0)
I am so sorry for all you are going through.  When my husband ended up in the hospital, all of his blood work came back fine with the exception of anemia.  I took it upon myself to obtain a kit from Igenex, have his pcp draw his blood and sent the blood off by federal express to Igenex.  Thank goodness I did as he not only had lyme but babesia which is a coinfection and a parasite and was causing the severe anemia. 

I do believe that you must find an LLMD.  They are the only doctors who will treat you properly.  We continue to get the run around from every single doctor we see except for our LLMD. 

 

Posted 12/29/2012 4:50 PM (GMT 0)
Justme, I had to come back to this post because I was so upset for you when I first came across it. Know that you have a lot of people praying for you, and maybe this is an unexpected answer to get you to a doctor that will be able to help you better than the folks at the hospital. I would encourage when you call LLMD's to make sure to let them know of your ER visits etc, maybe they can prioritize you.
My case is mild though sometimes it doesn't feel like it and I was actually very happy when I gave my doctor referral to someone else, their case was more serious and they got an appt before I did - when a dr prioritizes like that I think it is a very good sign.
Posted 12/29/2012 4:58 PM (GMT 0)
Justme,
I'm so sorry that the hospital stay didn't help any for your Lyme & any other infections you may be carrying - but one thing it DID do was to confirm that there are no other things going on that could have been life-threatening and/or things that would have hampered your Lyme treatment.

Sending you an email with a few suggestions and plenty of hugs!
Posted 12/29/2012 5:03 PM (GMT 0)
Do you have other LLMD's that you've contacted? Or do you need more names. A lot of LLMDs use Igenex but like most everything else, the results take awhile.
Posted 12/29/2012 5:19 PM (GMT 0)
Yes I have contacted quite a few, but the out of pocket cost for me is to much right now I am waiting on the western blot to come back, and then I will go from there. I am just tired of people looking at me like I am a nut job.

Justme
Posted 12/29/2012 6:23 PM (GMT 0)

Hi Justme,

So sorry you have been through all of this, how terrible for you!  Below is some information that could really help you.

As far as seizures and twitching, the articles I have read over the years (mostly written by Dr. Jernigan) state that lyme bacteria releases ammonia which can cause seizures and other problems.   

I myself have taken a product in the past made by Dr. Jernigan (I'm not affiliated with Dr. J. or his products in any way) called Neuro-Antitox CNS/PNS formula.  I didn't have seizures or twitching (I had pain, brain fog, etc.) but I do know of many who have had seizures and this product helped them 100%.   It binds up all that ammonia as well as toxins so one can purge them out of their body.  If you want to buy the Neuro-Antitox Formula, the only place I know of is here:

http://jernigannutraceuticals.com

http://jernigannutraceuticals.com/Ammonia.html

http://www.ehow.com/facts_6791236_ammonia-seizures.html

Below is more information:

If you scroll down to the article about Leaky Brain Syndrome you can read more.

Partial paragraphs from this article:

It seems that Bb releases ammonia, which is converted to glutamine, by way of the glutamine synthetase pathways, which lead to localized swelling of astrocytes.

This ammonia-induced glutamine accumulation may cause dysfunction of astrocytes, leading to impairment of vascular reactivity of the BBB (Toshiki 2000).

Depending upon the severity of infection and tissue environmental issues – including pH, temperature, oxygen levels, emotional state – the amount of ammonia could cause variable and cyclical worsening of symptoms.
(It has already been reported that neurological problems are caused by either congenital or acquired hyperammonemia (Albrecht 1998)).

All of the ammonia-related pathological changes predispose these individuals to cerebral allergies, due to alterations in the blood brain barrier, subsequently allowing larger molecules, such as common dietary amino acids,to pass through to the brain.

Neurotransmitter receptors and function are impaired, and possibly the most common
symptom surfaces – altered brain energy metabolism, leading to cognitive brain dysfunctions, the total fatigue of the mind when forced to read, talk, or think for extended periods......

Hope this helps,

Denise

Posted 12/29/2012 7:38 PM (GMT 0)
Thank you all, I was looking at this today, I think I may help me. If the doctors in this area won't I have to find something that will. I do feel like I have a lot of toxins in my body. So whatever I need to do to help myself.

I know that some people have been cured by Antibiotics, but for me, it did not work. So Now I am doing a herbal protocol, and I can say I am doing much better on it, then I ever did on the doxy.

just me
Posted 12/29/2012 8:00 PM (GMT 0)
I am taking some neuro stuff from there, and it is a life saver, that it often unblocks my brain when really stuck.

I know I would not have gotten this far without it, to think.


U r in my thoughts and prayers, my lymie buddy Just me.
Posted 12/29/2012 8:46 PM (GMT 0)
I just saw your post and I'm so upset for you; I'm sorry that your hospital stay was not what you hoped for.

As Trav said though, the good thing is that YOU now know that this is definitely Lyme Disease and that there's nothing else causing the symptoms. It is good that you were able to be admitted and have all of that testing done at one time,verses having to go to many Drs. appts. You also now have those results to share with a good LLMD when you are able to have an appt. w/ one. He/she will see that so many other things have been ruled out.

I went through the same thing. I was hospitalized, had every test under the sun, and then got the "depression/anxiety" talk at the end of my 2 day stay. Nice, huh?!?

I would suggest continuing to look for a LLMD and to go ahead and schedule an appt. Many have long wait lists, so just do everything you can to save $ while you wait. The best testing for Lyme is through IGENIX. If you start w/ just the very basic Lyme test, it's around $150. LLMDs typically use IGENIX when they order testing. However, the co-infection testing, even through IGENIX, is as flawed, if not more so than Lyme testing. Most LLMDs diagnose coinfections clinically. For example, I was diagnosed clinically w/ Bartonella and I'm on Rifampin for it. Realistically, even if your Western Blot comes back positive from when you were at the hospital, that Dr. may not really have the knowledge to treat Chronic Lyme Disease so it would be beneficial to continue to seek out a LLMD. These illness are so complex and it takes a really knowledgeable Dr. to treat it. You may have Lyme co-infections also and if the Dr. isn't a LLMD he won't have a clue about those. What state do you live in?

In the mean time, what herbals are you on? Is it an herbal Lyme protocol? I've been reading a lot about Dr. Jernigan's protocol (as Deejavu mentioned). I was able to get her book, "healing Lyme" through my local library and I just ordered her Neuro Antitox CNS formula. It's around $25 plus shipping for the smaller container. Most of my symptoms are neuro., so I'm going to see if that helps. I also just ordered a portable infrared sauna for $160 on Amazon. I'm under the treatment of a LLMD and on 3 abx., but want to add more detoxing to see if it helps me feel better.

Maybe you could try Dr. Jernigans herbal protocol and increase some detox methods while you wait to get in to see a "real" LLMD?

I'm sorry that you had such a frustrating experience! 3 months of Doxy is NOT enough for chronic Lyme. When it comes down to it, the Dr simply lacks knowledge. Hang in there!
Posted 12/29/2012 8:55 PM (GMT 0)
Justme,

I know how you feel about being treated as a nutcase. Heather's pediatrician told us that she was just looking for attention. She said that Heather needed psychiatric help. The way that the doctor was looking at us was implying that we needed psychiatric help as well.

I hope that you can find a good physician to treat you. I concur with Deejavu about trying the Antitox LL CNS/PNS. That product removed the ammonia and headaches from Heather's brain. I highly recommend it.

My family is daily praying for the resolution of your issues.

Don
Posted 12/29/2012 9:12 PM (GMT 0)
Thank you, I just ordered the Neuro-Antitox II , I am currently doing the Buhner protocol, i think it's core 3. I have seen my symptoms improve quite a bit on it. My main concern is the seizures, I was having them about every 7 to 8 days, and then they started daily.

The hospital didn't seem to concerned with them, they said they were not affecting my brain, and sent me home with a script for Tylenol, of course I did not fill it because I don't need it.

I just get frustrated because when a doctors tell you, you have cured yourself of Lyme, it's like telling a cancer patient they cured themself. Now I am not in anyway a doctor, but even to me that did not make any sense.

It's crazy that the doctors think we are crazy, who would pretend to be sick, I can't make myself shake. I am just about fed up with them . I am going to find a good LLMD, and go from there. But in the mean time, I am going to do the herbal approach. Also I forgot the nurse doing my seizure test, told me that I should not research stuff on the internet, that it makes people worse. Before I pushed my doctor for the Lyme test, she was trying to convince me I had (Ms) if it wasn't for this website , and for me going to the library and doing the research myself, I may have been putting shots in my legs for a disease I do not have.



Thank you.

Justme

Post Edited (Justme4508) : 12/29/2012 2:26:23 PM (GMT-7)

Posted 12/30/2012 2:46 AM (GMT 0)
Good for you for advocating for yourself and believing in yourself. If it weren't for the internet and my researching, I honestly think that I would be dead by now! Thank God for the internet and forums like this!

I hope the Neuro-antitox helps you feel better and to stop the seizures!

I've heard good things about Buhner's protocol and recently got that book from the library as well as Dr. Jernigans book. (Oops, I think I had already mentioned that-Lyme brain strikes again, lol).

I guess maybe it's good to know that the seizures aren't affecting your brain? Seriously, they sent you home w/ tylenol for the seizures???? Did you laugh at that one? I don't think I could have contained myself! Morons!

Dr. Phil had an episode on Lyme Disease, I believe in 2011. It's on Youtube and you can find it on his show website if you do a search. The woman on there had seizures. It may be similar to what you're experiencing.

Let us know how you're doing. Get as much rest and detox as you can! Being in the hospital is extremely exhausting and stressful.
Posted 12/30/2012 3:37 AM (GMT 0)
That is so funny Mystery. I literally just watched Dr. Phils thing on Lyme. It was terrifying...
Posted 12/30/2012 4:29 AM (GMT 0)
It is scary! It's great that Dr. Phil had an episode about it. And I felt like it made the ID Dr. look ignorant, I think that's a good thing, lol!
Posted 12/30/2012 5:13 AM (GMT 0)
Just me! I am sorry to hear this! But you are one the right, although totally frustrating, track of finding a good LLMD.

You really must find one...other docs will not have a clue, as you have seen!! dang it!

Good LLMD's will understand the co infections and how to test for them...you wont' have to tell them how!

also... a western blot by itself is not conclusive. Again, the LLMD will know this and be able to accurately diagnose you.

And MS symptoms are well known to be able to be caused by lyme..a good LLMD will know this.

You just have the wrong people!

I had some similar issues: I was getting no where with a quasi- lyme literate practitioner who thought I shouldn't be tested for lyme..mostly cuz she knew she couldn't really interpret the tests.

I had, what I thought, was CFS. and suspected lyme.


Fed up and frustrated, I finally decided to find the best person I could in the country and stop messing around....I googled and researched docs online who specialized in fatigue. (and no, I am not wealthy! had to ask for help)

I then travelled 8 hours to one LLND and 2 to another..who accurately diagnosed me and treated me for lyme for three years. They were good docs, but did not get me well.

Then I found the best help of all this fall...as I have written about..at Hansa, as you know.

Anyway..it's all to say to hang in there! You will find someone! There just are not that many docs that really know how to treat the chronic lyme cases..but they do exist.

I also agree with the Jernigan CNS formula...I took it and it helped with ammonia and toxins in brain tremendously. The Jernigan home protocol is powerful and something you can do on your own.

Blessings to you and don't lose heart!
Nan
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