Ashley Lyme disease info?

[Idaho Dusty]

Ashley,

Could you give me a good link for Lyme disease info?

Thanks!!

:) Dusty

[ashley]

Sure,

Here it is. Dr. B (now retired from clinical practice, but still doing research) is the best Lyme Dr. out there. I saw him for 3 years before he retired.

http://researchednutritionals.com/FactSheets/Burrascano%27s%20Advanced%20Topics%20in%20Lyme%20Disease%20_12_17_08.pdf

[Idaho Dusty]

PERFECT!  Thanks for taking the time to link that for me!  I have a girlfriend who is not getting better and has a constellation of bizarre symptoms despite "normal" blood work.  Suddenly, reading this forum, I thought maybe she's got Lyme.  I will review that documentation.  

Thanks so much!

:) Dusty

[dollsie]

Hey Ashley,

Got my Lyme results back (IgeneX lab) and I am strongly positive. The strange thing is that the IgM had even more bands than the IgG. I wonder if the high steroid doses have reactivated the old infection (I also took antibiotics for 1.5 weeks about a month ago for a lip biopsy...) I tested positive for the coinfection E. Chaffeensis (HME) IgG by titer as well and my Vit. D ratio is still high, WBCs are still low, etc. So I think I have the info I need, and right now I'm trying to figure out who to see/what to do about this.

The Dr. that ordered the test said I need "urgent" treatment but he doesn't prescribe antibiotics. He was openly completely overwhelmed by my situation and sent me away with the name of one "Lyme expert" (not a LLMD) who isn't taking new patients. None of the LLMDs around here are taking new patients. My internist is on maternity leave. I know I need to be treated but I don't have a doctor!

What I've read through ILADS and Dr. B's protocol seems to indicate that someone who has been on steroid treatment for an extended period of time should have IV Doxy. This is probably preferable for me, anyway, because of the tummy issues - I was really nervous about oral antibiotics for that reason.

Lyme puts everything into place finally. Almost can't believe the test came back this way - in the past I had two Western Blots that showed one band each, and some positive ELISA tests, but nothing definitive. I knew something wasn't right though, because based on my history every Dr. I've ever seen has asked me if I've been tested for Lyme. There have been several symptoms since the beginning that weren't attributable to AD (very high fevers, weird rashes, arthritis, neuro problems). And even though my T4 and Fludro doses have been normal, I've needed high doses of steroids just to function. I have every manifestation of Polyglandular Syndrome, and there is a genetic tendency for that...but my identical twin doesn't have it, which makes us think the "trigger" must have been acquired.

Maybe it was the Lyme all along, which is why the primary/secondary issue has been difficult to sort out. Like you said, a person can have both! I'm glad I postponed the iron infusions - they are contraindicated in people with active infection. Also would have gotten an IV stress dose with each of those (once/week) and who knows what that would do to the Lyme...YIKES.

Kind of feeling desperate about the whole situation right now, not sure where to turn or who can help me, but am trying to remind myself that any information is valuable. I know you of all people understand what I mean! I know you're dealing with a lot right now. If you have a moment and feel inclined, I'd really love your input on things. Hope you're doing well.

Take care,
Leigh

[ashley]

Leigh,

I don't have time for a full post now, but wanted you to know I've read this, am thinking about you, will post soon. I am *so glad* that you found the problem!! No wonder our cases are so similar!! That explains so much. I know some good doctors. Tell me where you live and I can give recommendations. I now see a Dr. in NJ. Used to see one in MD. No good ones in VA.

You will get better with antibiotics for certain. I will be here to answer questions along the way. I've been thru a lot of Lyme treatment and am much, much, much healthier.

ashley

[dollsie]

Hi Ashley,

Thank you so much for your kind words. What you've said means the world to me. I'm really glad we found each other here!

THANK YOU DUSTY FOR THIS SITE!!!

I live in Baltimore, MD.

I'm so glad the anti-b's have helped you. It's a huge relief to hear that first-hand from someone, especially since we share so many other issues.

Thanks again for your time and wisdom! By the way - thanks for the T4/Dex advice too. It's more sensible to increase thyroid first...just got ahead of myself, and tired of steroid side-effects! :( Actually kind of enjoying the hypo-t, only because I'm able to sleep more now and don't feel like I'm on the verge of crisis every 2-3 hours, finally gained some weight. But, I should probably kick it before things become unpleasant. Maybe I can still get down to 0.35 of Dex, though...here's hoping!

Hope you're off catching some Z's by now...

Leigh

[Idaho Dusty]

Leigh,

Wow!  Although it might be overwhelming to have the Lyme diagnosis, it's awesome that you know what the problem is.  It gives you a place to start fighting!  Chances are, once you start with your treatment, some of your other problems will take care of themselves.  Once you are feeling better, taking care of the remaining problems won't be as tough to figure out.

I'm so happy that you like the site!  Thanks to Ashley for giving you such great information about Lyme.  I love the exchanges of information here!!

Thanks to everyone for being here and having the courage to share and fight to get better!

:)  Dusty

[ashley]

Leigh,

Here are the names of two doctors:

1. Cheryl Ortel Easton, MD
2. Andrea Gaito Basking Ridge, NJ

Both are good, but with very different styles/personalities. You can send me a private message and I can tell you more. Do you have an endocrinologist now? I have found that it is best to have a Lyme doctor and a separate endo. Many Lyme doctors (like Ortel, for instance) prescribe hormones (because so many people with Lyme have endo. problems) but I have found that things are far smoother when you have a separate endo. Gaito, in fact, requires this. She's the one I see now. I would choose one and make an appt. ASAP (because you will likely have to wait a while) and then figure out the endo situation. Is there any chance you'd be open to seeing Dr. Friedman?

Dusty is absolutely right. With sucessful Lyme treatment, many of your other problems will resolve too. This certainly happened to me.
ashley

[dollsie]

Hi Ashley,

Thanks so much for the info. So funny, because my mom works with a woman who goes to Dr. Ortel. Is she an OB/GYN?

My GP is pretty much integrative, even though he says he's conventional...I saw him yesterday and he said he'd consult with Ken Singleton about treatment. Do you know anyone who has gone to Singleton?

From what I've read on the ILADS site, I'd be a candidate for IV antibiotics. Do you do PO or IV? What do you take? Was your Lyme diagnosed before or after the AI? (sorry for all the questions)

I have an endo but am not comfortable with him. I've been to so many endos in the last several months. None of them seemed to know how to manage all of the overlapping problems. I would love to see Dr. F but I can't afford the trip right now, especially since some of this Lyme stuff will be out-of-pocket. My doc told me yesterday that insurance probably won't pay for IV antibiotics. I was prepared to pay for a consult with a Lyme doc, but hadn't thought about paying for the meds...what's a person supposed to do?!

I'm nervous about being on steroids with this infection, especially since it's apparently active. I know everyone has to wait their turn to see a good LLMD, but I wish I could get started on some kind of treatment right away. The thought of all the bacteria throwing a party in my body is freaking me out. I feel like I'm encouraging things with the steroids.

Thanks again for your help. This info is invaluable to me. I'd PM you but can't figure out how! (I'm an idiot).

Leigh

[ashley]

Leigh,

Dr. Ortel is GYN (but not an OB) - two days per week she does Lyme only.
My insurance paid for IV antibiotics. I did IV for 8 months, then IM, then PO rotations, now PO during flares only.

The up side of Dr. Ortel is that she takes insurance, Gaito does not. But if you went to Ortel and insurance paid, then you might be able to afford Dr. F?

Replacement steroids are not harmful in an infection. High doses are, but that's different.

I would ask your current Dr. to start you on PO or IM antibiotics while you wait to see Dr. Ortel or Dr. Gaito, or whoever. I don't know Ken Singleton. (or how to PM!)

ashley

[ShannonD]

Leigh,
I am so glad that you have more information.  I hope you can find someone soon to work with you on the lyme's diagnosis.  It does seem, from reading your posts, that your system is very sensitive. I hope that treatment can help to reduce those sensitivities, and make the addison's and thyroid easier to manage.

Did they measure your ACTH with the original diagnosis?  Supposedly ACTH of less than 35 points to secondary, regardless of hyperpigmentation.  

Take care,
Shannon

[dollsie]

Hey Gals,

I called Ortel's office yesterday just to get some info, and they told me to fax my info to be considered for an appt in November. So I guess I should ask the current doc to start me on something. Just so worried about my stomach. There is a doc near Baltimore who is "literate" and uses IV, and I can get in with him next week. But the only antibiotic he uses IV is Rocephin. I had assumed I'd be on Doxy and maybe something else with it...haven't heard much about Rocephin. Ashley, have you ever been on it? Did you have a picc line for your IV? I don't mean to pry - please don't feel obligated to answer anything you don't want to.

The insurance issue is tricky...In January I'll start over with my sky-high deductable, so in reality I'll be paying out-of-pocket for everything regardless. But at least the money would be going toward something if I go to a participating doc. I doubt my insurance will pay for treatment if the diagnosis was based on IgeneX (they didn't cover that test). This is so frustrating.

I'm pretty upset by the fact that the doc who diagnosed me didn't even attempt to start treatment, at least until I could get in with someone. I'm tempted to call him on Monday, to ask about this and also request that he call a LLMD on my behalf, since he made such a big deal about my result. So far he hasn't "talked the talk" in my mind. I'll stop there...

Shannon, thanks for the ACTH info. I really do think handling has a lot to do with that result. Prior to diagnosis I had low aldosterone and high renin, low Na and high K, and hyperpigmentation. All of my other issues are primary and/or "target organ" specific (anti-parietal cell abs, vitiligo, thyroid, etc). But, with Polyglandular Syndrome, it's possible to have some degree of hypopituitarism - and of course this happens with Lyme, too. Some people with PAS also develop things like myasthenia gravis, sjogren's syndrome, etc. All I know right now is that my pit seems to be working o.k., shouldn't affect my meds. I've tried going without Florinef to make sure I need it, and I can sometimes alternate days, but I can't function without it.

Oh Ashley - about the steroids. Do you think 0.4mgs is still supra-physiologic? I have a feeling that true physiologic replacement for my weight (95lbs) would be closer to 0.3 or so. My concern with the steroids is that the doses have been REALLY high so many times over the last several months - went from 30mgs HC to 100mgs HC, to 20mgs Pred to 40mgs Pred, then 0.75mgs Dex and now down to 0.4. I guess all I can do at this point is keep trying to taper, and get started on the antibiotics as quickly as possible. What do you think?

Thanks to both of you for your support! Hope you're doing well.

Leigh

[ashley]

Leigh,

After my initial Lyme diagnosis, a PICC line was inserted and I did 4 months of IV Rocephin 5x per week, followed by IV Doxy for three months. After that, the PICC line was removed and I did a combination of IM Bicillin injections and PO azithromycin. More after that....but don't want to overwhelm you.

I think .4 DEX would be actually OK to stay on when starting antibiotics. It's prob. a bit higher than average for your size, but not terribly high, and I think a stress dose will be needed for you starting on treatment. My hormonal problems were not diagnosed until after several years of treatment, but I think that treatment would have been much easier to tolerate if they had! For me, it was really rough at first. I wanted to quit. But thankfully my husband wouldn't let me and I'm so much improved now.

If I were you, I'd go ahead and make an appt. with that Dr. near Baltimore. Rocephin is a good drug to start with, even if you need to follow it with Doxy like I did. You can always send your info to Dr. Ortel in the meantime, just to hear her suggestion. I don't know if she regularly uses IV or not. By the time I saw her (once Dr. B retired) I was already on to a PO regimen.

By the way, is 95 lbs. your normal weight when healthy (ie before your health problems started)? What is your height? I'm fairly small too - I'm 5'2" about 102. If I get under 100 lbs. I don't look well, but over 105 and I don't feel right either. My frame is very very small, so I have a narrow range for healthy weight.

ashley

[dollsie]

Hi Ashley,

You are THE BEST. I don't know how to thank you for all of this information. I wish I could be of this much help to you!

95 lbs is a good weight for me right now. I'm just barely 5 feet tall. When I was really fit and strong, running all the time, etc, I was closer to 100. And when I got really sick I was between 85-88 which was way too thin. Like you, I have a narrow window of what feels "right".

I am really tempted just to see the guy near Balto and see what he has to say (hope it's worth my $250!). I do wonder about the need for combo therapy to start with, but my main concern with the Rocephin is the risk of biliary problems - did you have issues with that? I have chronic pancreatitis with acute flares, and a "dysfunctional" gall bladder.

Thanks for your honesty about the challenges of treatment. I really appreciate that. I'm a little perplexed about how to stress dose with only Dex, but will just have to experiment. I'm actually hoping that some of these weird sensitivities (like to the HC) will disappear once the Lyme is treated, and I won't be such a weirdo anymore.

I want to get better but am so worried about how we're going to pay for this treatment if insurance doesn't cover the IV - I have a feeling they won't.

Thank you again for taking the time to answer all of my questions. I hope you're doing well.

Take care,
Leigh

[ashley]

Hi again,

I am so glad to help. Really, I am.

I would stay with the .4 DEX - don't try to stress dose unless you have to, do you have capsules in different strengths?
About Rocephin. If your gall bladder is really bad, then they won't be able to use it. I knew about the risks, but didn't have any problems with my gall bladder to begin with, so I was willing to take them. Rocephin is generally given only 4-5 days per week (in a row) so as to minimize these risks.

And I do think some of your sensitivities will resolve with treatment. Mine did.
Keep me posted.

ashley

[Idaho Dusty]

FWIW:  I've been on IV Rocephin for pneumonia (prediagnosis) and a kidney infection (April 09) and I've had no trouble with it.

Funny, I'm a shorty too!  5'2".  I'm not a skinny shorty though, I'm a pony.  :)

Leigh, I really hope you can find a way to pay for your treatment or perhaps your doctor can find a way to make it covered by your insurance?

:) Dusty