posted
My computer is on the skids and I couldn't reply to that post so am putting it here as a new post. Hope it gets through:
Thank you all so much for your info. and advice. I guess I have a lot to learn. I've been very ill for 2+ years now - predominantly severe fatigue and cognitive impairment (secondarily: headaches, weakness, back and kidney pain, irritability/depression...). Had to take the FMLA in 6/03... spent 5 days being crunched through the Mayo system and they sent me home with a dx of Depression. Never mind that I did not set foot across the threshold of the psychiatry department nor took any depression inventories. They just couldn't find a tidy little label for me since they didn't do specific Lyme testing and other blood work looked okay to borderline low. Just when I was going to go back to work (too sick to work but too broke to have a choice) my not-for-profit lost its major grant funding and my job went from full time to 20 hours. I took unemployment instead of 20 hours/no benefits. I haven't worked a "real" full time job since, despite a master's degree. Started my own portrait photography biz then lost the energy to even swing that. The spirit is there but the body is VERY unable... Had to move in with my mother 2/04 since I can't pay rent/bills - not my hometown but her childhood home - a 200 acre farm in the middle of nowhere (population 47 in this rural community). Ended a relationship last week - my significant other "gave up on me ever getting better..." Was planning on attending a resume-boosting training conference today through Wednesday but had to cancel as I'm too sick to drive out of town, let alone get through the conference. Tomorrow's my 40th birthday and I must say I'm pretty bummed out these days. I feel like it just doesn't matter how much I apply myself - that I simply cannot win. Am definitely suffering a crisis of faith/hope. No job, no hubby, no kids, few friends who've stuck around... I'm struggling with my diet too - eating the forbidden sweets - and I KNOW that's not helping matters one bit. Candida is alive and well here despite Nystatin and Diflucan. I am such a generous "host" - ha ha. I've been so distracted for the past two years with medical bankruptcy and applying/reapplying for social security, public aid, state health insurance, etc., that I haven't had much leftover energy to really delve into this Lyme disease thing. Major brain fog problems too. I have read a lot but am still at the point where I am jaw-droppingly amazed at how complicated it is --- and these days, the more I learn, the more hopeless and defeated I feel. Like learning yesterday that my soy-based diet could be setting me back even more. So I need to do more research, connect the dots for myself and come up with a plan. Guess that's why I feel as if I'm kind of doctor shopping. Feel as if my LLMD should be a stronger presence in that department... a good diagnostician, not just one to throw Rx after Rx at me and hope for the best. Abx. since my diagnosis last January have helped only minimally. I'm sure I've herxed but for me herxing feels like exacerbation of same symptoms so I have a hard time knowing 'for sure' whether or not a med is working or not (same end result it seems with or without a herx). I look back through all the notes I've kept and I honestly never felt better on any one particular med. From that handful of Rx's my LLMD gave me I don't know where to start. I've been refilling my Clindomycine/Quinine just to keep something going - hopefully a good choice as Bea pointed out that her Dr. B. said to stay on it for four months (to be rotated every 10 days with Biaxin and Plaquenil all throughout?). I never knew that. Could you guys give me your thoughts about abx. combos? What's worked best for you? My doc has had me on one at a time for 10 months. I had a tick on/in me for three days 10 years ago (remember the incident distinctly - never dreamed I could have Lyme - if there was a rash it was on my head, where the tick wound up before I yanked it). I don't know which prescriptions to fill. I know I need to learn more about Babesia and other co-infections plus alternative modes of therapy such as Rife. Would really love to hear what's worked best especially for others with chronic Lyme and symptoms I described above. And who feels they have hit the LLMD lottery jackpot? I'd be willing to travel. Someone at ILADS told me Burrascano still accepts patients... Meanwhile, I am trawling this site!! THANKS SO MUCH for all advice. Definitely will not pursue flu or pneumonia shot!
Posts: 63 | From Deer Grove, Illinois, United States | Registered: Jan 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there lymebites......
Mayo clinic is the pits as is most mainstream establishments.....
You may have luck a little closer to you than going all the way to new york (long island) he's a little under the weather right now anyway.....
You do need a llmd...a good one..... But even then the llmd will throw abx's at you like a handful of darts and see which one sticks(works best).
An exacerbation of symptoms usually means you're experiencing a jarosch herxheimer response...which is a good thing.....
If you could break up your correspondence like I'm doing it would help a lot of lymies read it better...
A lot of us have a hard time with blocked up text...
Anyway....go to llmd search and see if you can find one close to you....
Get a copy of Dr B's protocol and see if your doc will follow it....
You have started on a long journey...unfortunately...but there is hope.....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I (and some others here) have trouble reading solid blocks of print, so I am splitting your post up so we can read it. It looks too interesting to pass up.
I will add my response at the end. Ann - OH
[quote] My computer is on the skids and I couldn't reply to that post so am putting it here as a new post. Hope it gets through:
Thank you all so much for your info. and advice. I guess I have a lot to learn. I've been very ill for 2+ years now - predominantly severe fatigue and cognitive impairment (secondarily: headaches, weakness, back and kidney pain, irritability/depression...).
Had to take the FMLA in 6/03... spent 5 days being crunched through the Mayo system and they sent me home with a dx of Depression.
Never mind that I did not set foot across the threshold of the psychiatry department nor took any depression inventories.
They just couldn't find a tidy little label for me since they didn't do specific Lyme testing and other blood work looked okay to borderline low.
Just when I was going to go back to work (too sick to work but too broke to have a choice) my not-for-profit lost its major grant funding and my job went from full time to 20 hours.
I took unemployment instead of 20 hours/no benefits. I haven't worked a "real" full time job since, despite a master's degree.
Started my own portrait photography biz then lost the energy to even swing that. The spirit is there but the body is VERY unable...
Had to move in with my mother 2/04 since I can't pay rent/bills - not my hometown but her childhood home - a 200 acre farm in the middle of nowhere (population 47 in this rural community).
Ended a relationship last week - my significant other "gave up on me ever getting better..."
Was planning on attending a resume-boosting training conference today through Wednesday but had to cancel as I'm too sick to drive out of town, let alone get through the conference.
Tomorrow's my 40th birthday and I must say I'm pretty bummed out these days. I feel like it just doesn't matter how much I apply myself - that I simply cannot win.
Am definitely suffering a crisis of faith/hope. No job, no hubby, no kids, few friends who've stuck around...
I'm struggling with my diet too - eating the forbidden sweets - and I KNOW that's not helping matters one bit. Candida is alive and well here despite Nystatin and Diflucan. I am such a generous "host" - ha ha.
I've been so distracted for the past two years with medical bankruptcy and applying/reapplying for social security, public aid, state health insurance, etc., that I haven't had much leftover energy to really delve into this Lyme disease thing.
Major brain fog problems too. I have read a lot but am still at the point where I am jaw-droppingly amazed at how complicated it is --- and these days, the more I learn, the more hopeless and defeated I feel.
Like learning yesterday that my soy-based diet could be setting me back even more. So I need to do more research, connect the dots for myself and come up with a plan.
Guess that's why I feel as if I'm kind of doctor shopping. Feel as if my LLMD should be a stronger presence in that department... a good diagnostician, not just one to throw Rx after Rx at me and hope for the best.
Abx. since my diagnosis last January have helped only minimally. I'm sure I've herxed but for me herxing feels like exacerbation of same symptoms so I have a hard time knowing 'for sure' whether or not a med is working or not (same end result it seems with or without a herx).
I look back through all the notes I've kept and I honestly never felt better on any one particular med.
From that handful of Rx's my LLMD gave me I don't know where to start. I've been refilling my Clindomycine/Quinine just to keep something going - hopefully a good choice as Bea pointed out that her Dr. B. said to stay on it for four months (to be rotated every 10 days with Biaxin and Plaquenil all throughout?). I never knew that.
Could you guys give me your thoughts about abx. combos? What's worked best for you? My doc has had me on one at a time for 10 months.
I had a tick on/in me for three days 10 years ago (remember the incident distinctly - never dreamed I could have Lyme - if there was a rash it was on my head, where the tick wound up before I yanked it).
I don't know which prescriptions to fill. I know I need to learn more about Babesia and other co-infections plus alternative modes of therapy such as Rife.
Would really love to hear what's worked best especially for others with chronic Lyme and symptoms I described above.
And who feels they have hit the LLMD lottery jackpot? I'd be willing to travel. Someone at ILADS told me Burrascano still accepts patients...
Meanwhile, I am trawling this site!!
THANKS SO MUCH for all advice. Definitely will not pursue flu or pneumonia shot! [end quote]
Lymebites, The one major thing to know about Lyme and related tick-borne disease is that there is no one size fits all for diagnosis or treatment ... especially treatment.
Lots of people have really good experiences to relate, but we can't take them as the basis for our own treatment.
I think you need to put your case in the hands of an experienced doctor who will analyze your case and prescribe what is best for you. Then you need to do some logical things to help support your immune system and, if needed, some help for your emotional life.
I think being in contact with people in your area who have experience dealing with Lyme, by phone and by e-mail could be helpful. Check out the support groups list in the menu on your left here.
I know there are some docs in WI that are pretty good - and lots of people go to Missouri to see Dr. C.
I will send you a private message about them.
You are going through a lot and I hope you can find some good ways to deal with everything and feel better in all ways.
Sending good thoughts and wishes and a hug, Ann - OH
I too, as well as others here, know the helplessness and loneliness of being ill with this nastiness. It seems to take the meaning out of existence.
However, I've never found the option of surrendering to a bacteria as an option I'm willing to take.
In my rather short but traumatic experience with this "disease", I have gotten the sense that those who do not seem to respond well to abx, either have not been dx with the predominent pathogen, ie. dx with BB, but Erlichia or one of the other pathogens which the person has, has not been dx, which is the one causing the most grief.
Or the person is in dire need of massive amounts of some targeted supplements and PROBIOTICS!!
Or both.
It is my honest opinion that NO ONE gets well without a healthy intestinal tract and a balanced body.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I agree.You need a better LLD closer to you. Have you tryed any of the cyst busters?Because with Chronic lyme and ABX they re-treat into the cystic forms. Flagal is good and also Tinamax.In combo with your ABX.Are you taking alot of Pro-biotics? .If not, yeast can make you really sick. It is a long road back .I know.But if you hang in there I think you will get better. The herxing can be brutal.And sometimes You can,t tell for a long time if you are getting better,sometimes because of the constant die off. Have you tried the IV route.? A long time ago,many many years I went untreated this helped alot for me. You might have to wait a while and find a good LLD and the SS benifits? Do you get medicare /medicade? Good luck and never give up.People do get better. I think this is too soon in your treatment to tell Take care dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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I do take 2 FloraSMART tabs per day, 8 Nystatin tabs and 200 mg. Diflucan.
Would never stop taking abx. - but am confused by what my doc prescribed. Haven't tried IV's yet as my doc wants me to try the following first:
1) Vantin 200mg. 1 per day with Tetracycline 500mg. 1 per day 2) Then Augmentin 875mg. 1 per day with Amoxicillin 500mg. 2 per day - don't these two do the same thing?? 3) Then Erythromycin 250mg. 2 per day plus Malarone 250 mg. 1 per day 4) Then, Flagyl 250mg. 1 per day with Bactrim DS 400 mg. 1 per day.
Are these dosage levels high enough to be effective instead of throwing $$ away? Where do I go to learn which abx. are cyst-busters and which target different things?
Not convinced any of these combos will work. Where to start? What about Mepron? Is there a place on here - or somewhere else - to read summaries about Lyme meds, dosage levels, etc.?
I was not tested for co-infections - doc just assumed I had them all. Are there reliable assays that could determine the presence of Ehrlichiosis, Babs, Bart, etc., since I've been on abx. for 10 months?
I've been denied twice for SS/D and have hired an attorney for a hearing with an administrative law judge. My attorney sent my LLLMD the `residual functional capacity' questionnaire and they sent it on to me. What am I paying this guy for anyway? Like I can really talk about my prognosis in acceptable medical terms? I feel that I'm having to be my own doctor and am clueless as to what to do.
Posts: 63 | From Deer Grove, Illinois, United States | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
YOU SAID,
"My attorney sent my LLLMD the `residual functional capacity' questionnaire and they sent it on to me. What am I paying this guy for anyway? Like I can really talk about my prognosis in acceptable medical terms? I feel that I'm having to be my own doctor and am clueless as to what to do."
Send that questionaire right back to the LLMD. follow up with a phone call. Oops that reminds me need to call my insurance co and CVS pharamcy.
Honey there is hope alot of people get better. It's the herxing..... It really gets ya down.
Feel better and happier,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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bettyg
Unregistered
posted
Dana, please break up your long paragraphs like Ann did ok...we chronic lymies need this! thanks.
Also a mental functional capacity test done by a PSYCHIARIST helped me be approved 7-1-05! Took me 5 years of hell to be approved.
If you/your MD complete your RFC together, REQUEST THAT HE NOT NOTE THIS IN HIS MEDICAL NOTES, "WE COMPLETED RFC TOGETHER". DDS/judge wil use that against you.
IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Some Physicians fel that you are best at fillling out the questionaires and then they sigh off on them.
I'd say more...but gotta go.
Trout
Chin girl...you'll make it.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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