I thought I had it beat!

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apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 5/17/2010 3:59 PM (GMT -7)   
I am new to the board, but not new to lyme disease.

I am a 24 year old female who first began with neurological symptoms (including facial pain, double vision, peripheral neuropathy, and decreased cognitive function) last April. I finally got ahold of a Lyme literate Infectious Disease doctor last October. I was treated with IV Rocephin for 6 weeks and then oral antibiotics for 4 months. Two months before the end of my treatment I felt AMAZING! Just like my old self, and I have continued to feel good since!

Alas, about a month ago I noticed some hearing loss in my left ear and started experiencing intermittent (albeit intense) ringing in the same ear. I have had problems with fluid building up in my ears after a cold in the past and thought it might be related so I went to see my ENT. After a hearing test he said it was one of two things, either I was having some problem with the nerve or there was fluid in my inner ear (a condition he called hydrops). Believing the latter to be true he prescribed me a diuretic and instructed me to keep to a low sodium diet.

I have had no change in my hearing loss (the ringing has subsided somewhat, but returns when I get tired out or am out in the heat) after 1 week of the prescribed treatment. However, I am now experiencing fatigue, which I am hoping is related to my sudden diet change (I droped 5-7 lbs quick from the diuretic).

All of this just seems too familiar. I don't want to go back to my ENT and have him start rooting around for another cause of the hearing loss and end up racking up more doctors visits and tests just to have them be inconclusive because this turns out to be lyme related.

So what are your thoughts? Did anyone experience full recovery just to end up with new symptoms a few months later? Am I just developing inner ear problems in addition to the Lyme? Or should I revisit the idea of an MS diagnosis (the previous doctors' favorite diagnosis, the old "come back in a year and we'll do another MRI")?

Any insight would be immensely appreciated! I just started reading this board today, but everyone seems so supportive, knowlegable, and articulate. I am very excited I found it!

Post Edited (apeter) : 5/17/2010 5:02:43 PM (GMT-6)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/17/2010 4:05 PM (GMT -7)   
Hi apeter,

Welcome to the forum and welcome to our Lyme family:) We have a great group here and I am sure someone will be able to help you. The first question I have is have you talked to your LLMD about this to see what he/she thinks? We do have a member here that did have hearing loss from Lyme. Maybe it is best to be safe than sorry and let your LLMD know.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 5/17/2010 4:19 PM (GMT -7)   
Thanks CajunGrl!

I have not yet mentioned it to my LLMD. She was wonderful with getting me treated, but I know from other patients that she seems to frown upon the idea of Chronic Lyme. I guess I am mostly just worried about contacting ANY other doctor and getting caught up in tons of (expensive/stressful) visits and tests again.

Notes to add to my above description: I did NOT experience any herxing during my treatment, just a slow, steady relief of symptoms.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 5/17/2010 7:24 PM (GMT -7)   
apeter, if your so called "LLMD" frowns upon the idea of people having chronic lyme disease, then your doctor is not a LLMD in my opinion. She may think she is, but most Infectious Disease doctors have a very narrow view of lyme disease and are not really qualified to treat lyme disease unless they abide by the ILADS guidelines, which most ID doctors don't do.

Maybe I missed it, but do you recall getting bit by a tick? Did you get a bulls eye rash? What tests did your Infectious Disease doctor give you to determine that you have lyme disease? Have you had a Western Blot test by Igenex?

Please don't misunderstand, I'm not dising your doctor. I'm sure she's a good ID doctor, but a good LLMD, especially one who abides by the ILADS guidelines, would never frown on the idea of people having chronic disease--ever. She's in complete denial or simply had no understanding of this disease to say such a thing as this.

I hope you don't have Lyme disease, but until you've been checked and tested by a LLMD who is a member of ILADS, I would not put a lot of confidence in your ID doctor's approach to treatment unless she is following the ILADS guidelines. With a comment like that, it doesn't appear to me that she is.

Gary

apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 5/18/2010 8:18 AM (GMT -7)   
GWB,

You're right about my doc. She's probably not a true LLMD. She diagnosed me with Lyme based on my western blot (three bands on the IgG, one of the IgM bands), my progression of multifocal symptoms that jumped around, and slight-but-noticeable bell's palsy. I was about to have my lab work sent to IGenex when I got my diagnosis. My western blot had been ordered by an infectious disease doctor I saw at Piedmont Hospital in Atlanta who refused to diagnose (i.e. told me to see a shrink). I was mostly just grateful to get a diagnosis and get treated. After months of bizarre neurological symptoms, with my pain increasing and my cognitive function worsening everyday, by the time I saw her I could barely string a sentence together.

While I do not remember being bit by a tick or having a bulls eye rash, I was out hiking two months before my first neurological symptom and about two weeks after the hiking trip I had a mysterious fever and achey-ness for a week.

I understand your skepticism of my ID, but at the time I took my diagnosis and IV abx treatment and ran. She seemed confident in her diagnosis and I know she has treated a lot of lyme patients in the area. I felt lucky that I had found someone close(ish) to home, that I didn't need to go further out of state.

So is that it then? I need to find a true LLMD and make sure I ever had Lyme?

I know this is whiney, but the idea of going on another doctor quest makes me want to give up... I mean, the ringing and the hearing loss isn't that bad...

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 5/18/2010 8:58 AM (GMT -7)   
Hi Apeter,

If you don't want to go back to your ENT and go through unnecessary tests, what you could do is start up an herbal remedy for lyme disease yourself and see if you get any die off or herx reaction. If you do, then you should go find a real llmd; I agree with GWB -- any doctor that doesn't hold with the idea of Chronic lyme just isn't reading the literature.

apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 5/18/2010 6:39 PM (GMT -7)   
achievinggrace,

That's great advice! Do you think I would herx with an herbal remedy if I didn't on IV and oral abx? I am currently on Dr. Burrascano's daily supplement regimen and have been since my dx. Do you recommend any herbal protocols?

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 5/18/2010 8:26 PM (GMT -7)   
congrats for getting better good sign I think relapses happen and one needs to try again (abx) and then hopefully u will no longer ever need to go back on again.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/18/2010 10:45 PM (GMT -7)   
Each and every herb and/or abx given for Lyme can trigger different responses in different individuals. And the response may be different in the same person for the same abx/herb given at two different times. That is the nature of Lyme...changeable, very changeable. That's how it eludes the immune system, and how it can be missed so easily on tests.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 5/19/2010 7:30 AM (GMT -7)   
apeter,

I definitely had die off from taking Cats Claw (Saventero is the type for Lyme Disease) and again with colloidal silver. I am not a doctor, so I am just telling what worked for me. Good luck!

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 5/21/2010 6:57 AM (GMT -7)   
tease root and japaneese knotweed wil cause die off. just a dropper of each twice a day.
hep c , lyme
Dad has lyme


apeter
New Member


Date Joined May 2010
Total Posts : 12
   Posted 5/21/2010 10:15 AM (GMT -7)   
I will check these out! Thanks for the suggestions. I will keep you posted on how it goes.

daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 5/21/2010 10:40 PM (GMT -7)   
apeter,

I was bit by a tick in 2003, had bulls-eye rash, classic symptoms, however didn't get treated until 2005 (abx route). In 2008 relapsed (again abx route). April 2010 relapsed again (this time am following Dr. J's protocol--he's in Kansas). It is not the abx route.

I decided to go the non abx route this time because of my husband's amazing journey to better health on Dr. J's protocol. GWB is sharing "his Lyme Disease journey" on Healing Well and if you're interested in reading about it here is the link (it is 3 pages):

http://www.healingwell.com/community/default.aspx?f=30&p=1&m=1690780

May God lead you to the right healing path for you.
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