posted
I posted in the general support section because I can't figure out any specific questions to ask, and I'm copy and pasting some because brain fog is pretty bad, sorry if it seems like a double post because of that.
I live in north east corner of Indiana, and like a lot of places, nobody here has a clue about Lyme. Been misdiagnosed with mental illness for the last 9 years, but about 8 months ago my body started deteriorating fast, dropped a lot of weight, ect.
(there's a ton more to my story but this is the very basics)
I found an okay LLMD about 2 and a half hours away, but am not being treated aggressively, and have not been tested or treated for possible coinfections.
Have yet to do an Igenex western blot, but while I was in the hospital for a week earlier this month, tested negative with an Elisa test as I expected. I want to do the Igenex test but money is a huge issue.
I have Indiana State Medicaid though.
Have done a CD57 test that came back an 11, which I know is very low. Also test with having high levels of lead and aluminum. Weak antibody showing for candida. No tests for coinfections done.
Having many neuro problems so it's been hard for me to figure out what to do, or to communicate clearly online even which has held me back, but I'm determined to make some more progress.
I have been on 300mg of Doxy for about 6 weeks now, and started 1750mg of amoxicillin a day last week along with the doxy.
I was recently in the hospital for a week when I lost all control of my body and slid down the stairs, and couldn't move or talk for two days, but have slowly gotten most functions back. I also had a seizure while in the hospital and coded and all that.
They of course threw out the diagnosis of Lyme and had to have phsyc consults and all that fun stuff, with an infectious disease doc, "completely ruling out Lyme" from their Elisa in house test, and with looking up diagnostics online, haaaaa. Yeah, I know the whole deal with everything, and it has been the same as most deal with, with doctors having no clue what they are talking about.
I'm looking at my next step with things, I have an appointment wednesday with my current LLMD, but she's not a specialist and I have been feeling the need to go to a full specialist, have been thinking of Dr. C in MO, but money is a major issue, and I'm having to convince family of the need to take drastic measures of traveling that far.
Brain fog is terrible, so I have trouble sorting through everything and figuring out what I'm even doing most of the time. Um, so sorry if my posts aren't ..... concise.
I have questions, but I can't figure out what to ask...... I know I need more help than I am getting, but I can't think things through to get more help and parents keep leaving things up to me to do anything.
I'm fighting hard, but scared I'm too far gone.
What do I do next? I feel like I just need somebody to just tell me, you do this, than this, and do that.
Betty G gave me a rec for Dr. H in WI, and I think he's actually closer than Dr. C in MO.
My big hurdle right now, I'm thinking is getting those around me, parents, family fully on board with how serious this is right now, and large measures need be taken?
How do you convince family to take you 6-10 hours to a doctor with no money without sounding over dramatic? I'm not sure what to really do/say, I have 'Under our Skin' and they have watched it, I think they are still wanting to be in denial or something....
So what do I do?
Posts: 17 | From Near Ft. Wayne. IN | Registered: Mar 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
unshakeable333,
So sorry to hear your story, but like many here family and friends seem to wander away, if not disappear as in my case.
They are either afraid of the truth or don't want to know the truth. They don't want to hear all the pain and suffering your going through.
In my case after the second time of asking how I'm feeling and I said "Like S***", they stopped asking.
It's very common for people with Lyme to lose thier families over this controversial disease.
Myself, I have bad Nuero Lyme like yourself or Late Stage whatever you want to call it, it's bad.
I also have Bartonella, Babesia, and Mycoplasma.
I had 8/10 bands positive on the Western Blot, A postive Spinal Tap and a Moderate-Severe brain SPECT scan.
Have you had a SPECT scan done???
It's obvious you have Lyme by your CD-57 test, you have to remember that most Lyme cases are treated on a clinical basis.
I would say get to the right doc and get your self checked out for coinfections right away!
If you see a good doc he will know what to do... that alone will bring all that stress and tension off your shoulders.
Having a doctor and even people on here relate to what you are going through is huge. It has helped me so much. It erases all the negativity of people telling me "I look good" or "it's in my head".
I wish you nothing but the best that you find that "right" doctor and get help fighting this horrible disease.
I also hope and pray that your family supports you in such a tough time!
Best wishes and keep us posted!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
OK unshakeable. I totally understand your neuro problems - lack of executive functioning, decision-making, etc. - I have this too, but it's getting much better with treatment.
Here's what you're gonna do!
1. Buy "Everything You Need to Know About Lyme Disease (and Other Tick-Borne Disorders)" by Karen Vanderhoof-Forschner
It is wonderfully informative and gets down to the basics of just how dangerous this disease is, and what it can do, and why treatment is necessary and effective, and in the end, money-saving. Have them read it - just skim and find things that apply to you, and mark the pages for them - highlight the important parts.
2. Make an appointment with a NEW LLMD, do whatever it takes to convince them it is necessary. There is no overplaying the dangers of this disease - they are real, and you are experiencing some very serious symptoms.
3. Buy "Cure Unknown" by Pamela Weintraub. Very very useful for explaining the patient's point of view, and the science as well. It is a bigger book, and not as easy to skim for argument-making points, so that can be read AFTER they have gotten you to your NEW LLMD.
3. GO to your NEW LLMD. BRING at least one of your parents into the appointment with you. INSIST on this. They need to see a competent Dr. validating your condition, and your treatment, and its severity.
I personally highly recommend Dr. C in MO. This Doctor is well worth the extra couple of hours to see them. They are my Doctor, and I am so grateful I found them, after my first LLMD who just wasn't a good fit (sounded very much like your LLMD).
If you need help convincing your parents on this, we can provide you with the resources. YOU just need to stand your ground and know that you have late-stage Lyme, it is serious, and that you DESERVE their help.
Talk with them, show them information, they need to be on your side, for as long as they are your caretakers. If you need help developing a game-plan to do this, we can help you.
If they can't be convinced, then there are always other options. Other Lyme patients, a friend, anyone that can help you defray the cost of the visit and tests, and drive you to your appointment.
Your parents haven't been given enough information yet. They are not lost yet. Not even close. It takes a lot of time to digest and come to grips with this VERY complicated disease.
You're going to make it through this, and I think with some help and the facts, hopefully your parents will be there along with you.
(I should note that I am NOT a Doctor or medical professional, and any advice I give is only as a fellow Lyme patient, and is only my opinion.)
posted
I'm just getting back online today... it's been a pretty rough week. Last wednesday I had my doc appointment and found out there was a specialist there that isn't on anybodies lists you guys have.
I got a clinical diagnosis of Bart and a script for Leviquin, they also had me do a Vit C push which actually did wonders.
That's the good news, the bad news, is when I got home I was irritable and yelled something at my dad and he ended up attacking me, though I fought back this time.
This is not the first time this has happened, he had abused my sister and I most of our childhood, but my mother had convinced me he was different now, well, not so much it seems.
I'm now pretty much ex-comunicated from the family now as I called the police on him finally, so I'm currently homeless, but am temporarily staying with a sister's friend.
No idea what I am going to do from here now or if I can even continue treatment, I might make some seperate posts on all this, because I really don't know what to do with being disabled and can't drive and no funds. I'm staying strong though and wheeling and dealing however I can to survive right now.
Luckily that vitamin C push really boosted me and have been pretty mobile the last week or I'd be in a lot worse situation.
I could really use some support right now, my parents are telling the rest of the family that it was me that attacked my dad and that I'm dangerous or something or other, so I'm completely on my own with this now.
Posts: 17 | From Near Ft. Wayne. IN | Registered: Mar 2009
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