posted
I just recently got diagnosed with a relapse of lyme disease. I am now 32 but got originally diagnosed with lyme in 1995/94 (7th Grade).
I had it relapse a few years after that and then I seemed to be fine through most of my 20's. I smoked a lot of weed and drank more than I should have up until I was 26 or so, and then I only drank heavily a few times a year.
When I was 27 I got very dizzy and tired at work and just didn't feel well so I went to the ER and they said I had mono. This all happened after a weekend of drinking so my Dr was concerned that I might have some liver damage, so they did some imaging and found I had a lesion.
The blood test didn't show any significant damage. I had pains in my liver area so they suggested I might have gal stones (mind you I have never been overweight). They removed my Gal bladder and I seemed to recover and stayed away from fats for 6 months and then went back to a regular diet.
Then, about 2 years latter (about 28/29) I started noticing my attention span slipping and I was tired and having very irregular bowl movements (I chalked the tiredness up to being in school and working and olny getting 5-6 hours of sleep).
After seeing a gastro and having a colonocsopy they told me I was normal to take Imodium. So I delt with the irregular bowels movements for a year.
Then, over the last 2-2 1/2 years I was getting dizzy spells, nausea, really bad mid back pain (radiates to front), headaches, mild blurred vision or unable to focus my eyes,
muscle twitches, a rare but intense muscle spasm in lower abdomen that would prohibit me from walking, trapped gas/bloating and of course diarrhea.
At first they told me I was anxious/depressed and gave me xanax which kind of helped but not all the symptoms. Then they told me it was GERD (which I was diagnosed with in 2001 but haven't had any real heartburn in years).
I was taking Protonix and then Dexilant for 14 months without ever having heartburn and now I've been off it for about a month and have been through the worst heartburn I have ever had.
After more dizzy spells and bad back pain I went to the Dr again and tested me to see if the lyme was active again.
It was and now he wants me to go on doxacylcene for a month and says to avoid dairy while on it. I have been on antibiotics (cipro) 3-4 times in the past year for what they thought was prostatitis
(because I mentioned trapped gas and ocasional pain in my testicle region and a very slight hue of yellow/green in my semen a few times) for about a month a piece.
I've felt so bad over the past year, I thought I was dying of something and at times it was hard for me to be joyful about things that I should be happy about. I want to live a relatively normal life please help me!
So my questions are:
-What of my symptoms can be attributed to lyme? -Can I have done damage to my liver by drinking while not knowing I had lyme? My liver tests for the past 5 years have been all slightly abnormal (slightly elevated alt and ast).
CRP was high 6 months ago but now is normal. -Should I see a specialist and let them decided on treatment or try the doxycyclene for a month and if the levels in my blood dont go down then see a specialist (this is what my GP wants me to do)?
posted
Have you ever been tested for the various Lyme co-infections? Given your diagnosis in 1995, I imagine testing for Bart/Babesia/etc was not part of the testing you received.
If I were in your shoes, I would find a LLMD and get in to see them to sift through your symptom history to come up a plan of action appropriate for you situation. I would guess that you have 1 or more co-infections along with the Lyme that you state was previously diagnosed in the mid-90's. How Lyme & company interacts with your liver, gal bladder & GI tract issues... the LLMD will be best positioned to guide you there.
Anecdotally, many of the symptoms you describe can be caused by Bart, Babesia or Lyme itself. If your organs were the true cause of your issues, certailnly Lyme & company are probably making things worse. There are many knowledgeable people on this forum, so you may get some profound guidance from them. Finding an LLMD should be high on your list no matter what though given your previous Lyme diagnosis.
Posts: 58 | From Virginia | Registered: Nov 2013
| IP: Logged |
gmb
Unregistered
posted
Go to "Seeking a DR" and ask for an LLMD in your area. It may take 3 to 6 months to get an appointment, so also get on their cancellation list.
Read Dr B's Guidelines at the top of this page and print out his symptom checklist to fill out, and take with you to your appointment.
You GP will give you too low of a dose of Doxy for too short of a duration. This will only put any active kettes into dormant cyst state until you stop taking it.
A better test would be to take some Tindamax pulsed two days on and 5 days off.
posted
So I'm guessing it's not too far fetched that I could get a relapse even after being healthy for so many years?
Also being a newbie, what does LLMD stand for? I'm assuming it is an infectious disease specialist that specializes in lyme..?
Posts: 7 | From Northern NJ | Registered: Nov 2013
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
LLMD means a lyme literate medical doctor. It is a doctor who specializes in lyme disease.
It is generally NOT an infectious disease specialist. The infectious disease specialist is usually an enemy of the lyme patient because they don't believe in treating a person until they are well. They believe that 30 days of meds is all it takes to get rid of lyme disease.
If you go to the "Seeking a Doctor" section of LymeNet, you can ask for a doctor there. Then, people who know lyme doctors in your area will write to you privately with names and addresses of lyme specialists you can see.
We don't give the names of these doctors on the public board because state medical boards like to persecute the lyme doctors for treating lyme patients for as long as it takes to get rid of lyme disease. So, giving the names privately protects our lyme doctors.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Can someone tell me if this is the test to tell how active it is in my system? (I just want to be sure because if it just tells I am positive then it will always say that because I was infected over 15 years ago and will have the antibodies still)
Posts: 7 | From Northern NJ | Registered: Nov 2013
| IP: Logged |
posted
My LLMD says that you can only manage Lyme, not eliminate it. I know that mine was dormant for many years until I suffered a great deal of stress, which activated it. You may notice that people on this site usually refer to "remission" rather than a "cure".
I would imagine that excessive partying could activate Lyme, as our livers have been affected to begin with. I can't have more than one or two drinks on occasion now, as I tend to feel very hung over if I overdo it even a little.
Clean living makes Lyme much easier to cope with.
Posts: 123 | From Pawleys Island SC | Registered: Mar 2013
| IP: Logged |
posted
My plan for dealing with remission is to use Rife technology a few times a month, probably forever, after I think Im "cured" or in remission.
Colloidal silver may be another option. Or MMS daily, smaller dosages after you believe that you are better.
No one knows for sure if this can absolutly cured. To me it makes sense to have a long term remission maintence protocol, avoid stress, eat real healthy, do routine saunas.
Posts: 803 | From USA | Registered: Oct 2013
| IP: Logged |
posted
Even before I found it was lyme (a week ago) I stopped drinking to excess and don't smoke any weed for years now. In fact haven't had a sip of alcohol in a year, just because I have been feeling so rotten.
I believe I may have weakened my body and then added a ton of stress, that brought it on. In either case I am all for clean living now, and can definitely have fun without that stuff!
Posts: 7 | From Northern NJ | Registered: Nov 2013
| 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