posted
I was dx in 09 and treated with oral doxy and bactrim for 5 months and fully recovered, so i thought.
I relapsed BAD in september of 2010 and havent recovered since. I was not aware of the huge controversy with doctors and LD so when they told me in Sept "you took doxy for HOW LONG? theres NO WAY you still have Lyme" I believed them, and was thrown into a mental tailspin. I was so worried what could be plauging me? Im an otherwise healthy girl and never had any issues until now.
Well seeing as ive had workup for my heart, lungs, brain, neuro, endo, gastro, and allergies.. i realized that it was the Lyme, the whole time. What could possibly cause a multi system malfunction in a healthy young lass such as myself? Hmm
Anyway i decided to attack lyme head first but my LLMD in Howell only gives me 200 MG daily of oral doxy. I cant get him to give me anything different. Doxy gets rid of my mind fog, pressure and fullness in my head, and horrible headaches.. but my worst symptoms right now are racing heart, low BP, and BREATHLESSNESS!! Ive been out of breath for 7 months, its ruining my life. I dont hang out with friends, im on temp disability, and it just prevents me from enjoying anything at all. I feel smothered all the time.
Tell me if i am crazy, but i feel 200 mg of doxy a day is not enough to help me. Its enough to do some damage but it wont get me well since everytime i stop the doxy, the headaches come back full swing.
Here are some signs i considered when deciding my problem is, in fact, lyme.
1. NO OTHER SPECIALIST (ive seen 8) can find anything else wrong, or any explanation for my high HR and low BP. 2. I had an MRI which showed white lesions, non specific, and they were not there last year. 3. i had an ANA test done, which came back positive, but nonspecific 4. i have been dx with Adrenal insufficiency, Allergies, CFS, Fibromyalgia (at 22), Anxiety disorder, GERD, bipolar, asthma, yet no treatments helped. 5. three words - BULLS EYE RASH 6. each cbc and electrolyte panel shows low calcium, potassium, vit D, and low WBC I think it went downhill when the ER doctor last year told me theres no such thing as chronic lyme and 20 days of treatment is sufficient. I hate, HATE not knowing for sure that it is Lyme but in my case, im guessing its more likely than not, especially since i had a workup for everything under the sun!!
PLEASE i know this was a long ramble but any words of advice would be greatly greatly appreciated. Thank you all so much, you are like a 2nd family!
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I do not believe you are crazy...many of us have had similar experiences of going from doctor to doctor and getting no understanding of what's going on because tests are either negative or the results of the test perplex the doctor.
In my opinion, it might be time to seek a second opinion from another LLMD... You can post in the "Seeking a Doctor" forum to get ideas for who else to see...
There may be coinfections that aren't being treated by Doxy alone...
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
| IP: Logged |
posted
Thanks Razzle. I think my current LLMD has done all he can for me, so that is exactly what I am trying to do.
We are all crazy, aren't we!
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
| IP: Logged |
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi Toboein, I'm sorry you're feeling so bad!
All the signs are there, that you do have Lyme disease in my opinion.
Above all (# 5. three words - BULLS EYE RASH � those three words mean (Lyme Disease).
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
| IP: Logged |
I was sure that rash was diagnostic as well, it was gone by the time my Appt came up, of course! But i did take a photo and plan to take it to my next LLMD, once i find one!
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
| IP: Logged |
posted
Toboein - actually, the tiny bug is often smaller than a pimple on your butt. About as small as the period at the end of this sentence. Good luck ...
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
posted
Lemon - i was tested for babesia - negative of course.
geo - its a quote from the movie LymeLife
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
| IP: Logged |
posted
Ok
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Is this an ILADS LLMD you're seeing? That is a VERY low amount of doxy to be taking for the serious issues you are experiencing. I agree, it's time to find another LLMD.
posted
Yes Gary, according to everyone on this board hes one of the top 3 in NJ. Dr S in Howell. His reviews are great and he has helped so many so i dont understand what magic phrase i need to say to him to get him to up the dose!!
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
| IP: Logged |
posted
You might have POTS (Postural Orthostatic Tachycardia Syndrome), which is not uncommon.
Symptoms include racing heartbeat and low BP which can cause dizziness and breathlessness, especially when you stand up and try to walk around.
Ask your doc about a tilt-table test.
This is a fixable condition--people take florinef, cortef or a beta-blocker to correct it.
POTS was one of the first things my DD was dx'ed with, right after CFS. She has been on florinef for a few years--it has helped tremendously.
It's not unusual for other specialists to find nothing wrong. Nor is it unusual to have prior dx of CFS and/or fibro. And it's not unusual to be told there's no such thing as chronic LD.
BUT YOU HAD THE BULLSEYE RASH!! That itself is diagnostic of LD.
It's actually a good thing that someone was astute enough to test your adrenal function. In fact, florinef or cortef might be helpful for adrenal insufficiency as well as POTS. So perhaps you could kill two birds with one stone.
Definitely explore this possibility with your doc.
There are many here who developed anxiety as a symptom of Lyme or another TBD (bartonella I think) who had no prior history of anxiety.
And there are other "psychiatric" symptoms that can come along with TBD--such as OCD in people who have no prior history of that.
There are meds and supps that can be very helpful for these symptoms.
I don't know much about bi-polar as I personally have no experience with that. If you are concerned you might want to post about that specifically.
Low WBC count is not uncommon in TBD. There are other reasons why this can happen. Low Vit D levels can be easily fixed with supplementation-- another thing to take up with your doc.
B/c of your low potassium and calcium levels, I'd ask for the bloodwork to be repeated one more time (though it sounds like these labs have already been repeated). Your doc needs to address this.
Try not to get yourself worried about the white lesions.
And about that ANA---here's a portion of what I posted about ANA on another thread:
"The ANA test has never been a useful tool to confirm or rule out autoimmune disease nor is it an accurate indicator of severity of disease activity.
I was told that you can have a + ANA b/c of Hashimoto's Thyroiditis, that you can inherit a tendency to have a + ANA and that many healthy people have a + ANA.
Many w/LD and cos have had + ANAs with various titers and patterns over the years. One month you could have a speckled pattern 1:640+ and the next month the ANA could be completely negative.
I don't even know why docs bother with this test anymore. All this test does when it comes back positive is send people into alarm-mode that they could have lupus b/c they have a + ANA."
You found a good place here with a lot of helpful people. Best of luck to you on your journey to wellness.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
| IP: Logged |
My internist actually recommended trying florinef to correct my low BP and high HR. She also gave me a script for a tilt table test that i dismissed and unneccessary but now im going to take what i can get. Its funny you say Hashimotos because thats why i had the ANA done in the first place, an endo was testing for Hashimotos.
Im just sooo tired of this. I really would like to kick whatever is causing my shortness of breath/cardiac symptoms. If i could get rid of those, my quality of life would return. Im sick of being an invalid!!
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
| IP: Logged |
Well I am now feeling like quite the genius. Kudos to me LOL.
Please hang in there---
We are all so very tired of all this. But we will overcome it
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic