Another Story

02-26-2004, 10:46 PM

Hi guys, I'm new to all of this. I don't mean to bore anyone, but I thought I might share my story:
I am 22 years old and graduated from a the Univserit of Virginia last fall. During my time at school I had started getting all sorts of random skin problems, anything from rashes, to hives, to warts, and folliculitis. Since I had eczema my whole child hood, I didn't worry too much about these symptoms. But recently I had a genital rash. I got tested for STD's, and all tests were negative. This made no sense to me. A different problem I noticed was that my joints were in so much pain. my wrists hurt when I did anything like work out, or even play video games or the piano. It also went to my shoulder. I got x-rays which showed that my shoulder was partially separated even though I had not done anything physically dangerous with it. For a year I have been supplementing glucosamine chrondriton (1500 mg a day), multivitamins, and omega 3 fish oils. All of which seem to have helped me. A year ago, my neck was hurting and I got an x-ray which showed a misaligned vertabrae in my spine (is this spinal degeneration?).

After graduation I felt horrible, physically and mentally. Family and doctors explained it was just a tough time I was going through in life. Nevertheless I got a bunch of blood tests done cause I assumed my testosterone levels were low. Yes there were shown low, and I was also shown to have very low blood pressure and blood sugar levels (showing symptoms of hypoglycemia). I also got extremely tired of big meals, and got lightheaded everytime I stood up to quick. To add to all this I was getting very depressed, and anxious, and was sleeping for 11 hours a day. I tried working at a restaurant part time, but I physically felt like I couldn't do it.

Doctors finally said I had fibromyalgia....so i started going what I could...yoga, relaxation, massage, acupuncture, counseling, antidepressants, adderall. Yes all of this did help. I recewntly found out that a family friend who had fibromyalgia found out she really had Lyme Disease.

So I went to the do the doctor and said I wanted to be tested for Lyme disease...he didn't understand why (especially because i never recalled having a bullseye rash), but I made him take it anyway. I got a call yesterday confirming my Lyme Disease....yes it was bad news, but at the same time it was such good news for me that I started crying with joy for about 30 minutes. The realization that I wasn't a total hypochondriac and that I wasn't making these problems up in my head was such an amazing relief. So the past day I've gotten in contact with as many iinfectous disease doctors in the area as possible.

I started taking a prescription of Doxycycline which is suppose to last 60 days. But now I don't know what to do. I don't even know if I should be taking this medicine or what it might do to me (I havent even met with my doctor yet, he just sent a prescription to a local pharmacy and called me to pick it up). I have no idea how long i've had the disease, or how bad it has affected me. I DID have all the results sent to me. Are there any specific results I should be looking at form my blood tests which would give me more information?? Should I be changing my diet?? I know I can't drink alcohol for while i'm on anitbiotics....I'm not into drugs, but another friend who had lyme disease said marijuana helped him with the medicine's side effects? Any responses to that??

Ok I'm sorry this message is so long. this is the first member board I've joined, and I'm scared about my condition, but excited about its cure at the same time. ANY RESPONSES AT ALL ARE MUCH APPRECIATED.

Thanks All,
BeachGuy

02-27-2004, 10:03 AM

Here's my blood test info. It would be amazing if someone could translate any of this for me:

Lyme AB IGG:
93- absent
66- absent
58- PRESENT
45- absent
41- PRESENT
39- PRESENT
30- PRESENT
28- absent
23- absent
18- absent

Lyme Ab IGM:
41- absent
39- absent
23- PRESENT

Lyme Ab/Total Immunoglobulins= 1.33H (positive above 1.10)

Lyme Disease Ab Quantity= 1.09 (equivocal)

02-27-2004, 03:28 PM

Hi BeachGuy. First of all, congraulations on graduating!

I am sorry you have been through so much to get diagnosed, I know it is frustrating. Lyme Disease is very misunderstood by a large number of doctors. Only about 50% of people who have Lyme ever get a rash. I completely understand the relief you felt when getting a diagnosis. I felt the same way when I was diagnosed. It gives validation for all the symptoms.

Often, infectious disease doctor are not the best to see regarding Lyme. It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. Untreated or undertreated Lyme can be serious. Ticks can also transmit co-infections--Babesiosis, Ehrlichiosis (HME & HGE), and Bartonella. Many people with Lyme have one or more of these also. Have you been tested for these? This is important because many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. Where do you live?

What dose of Doxycycline were you given? A few tips when taking Doxy. Do not eat dairy products, take magnesium or iron products two hours before or after taking it, or it will not be absorbed properly. When on Doxy, stay out of the sun. You can get a severe sunburn in just a few minutes, even with sunscreen on. Also, do not lay down for at least an hour after taking the Doxy or you could ulcerate your esophagus (this should be listed on the pharmacy sheet). This happened to me and it is extremely painful. Whenever you take any antibiotic, make sure you take acidophilus capsules. They replace the good bacteria in the body and help prevent yeast overgrowth (which men and women can both get). The best kind to get are the ones that must be refrigerated. You can buy them in a health food store. Wait at least two hours before or after taking the antibiotic to take the acidophilus.

Hang in there okay? You are not alone and there is good help available.

03-01-2004, 03:23 PM

Glad to hear you found the answer to your problem. It's nice to know that there's someone else out there who's gone through all this while obtaining their degree. Congrats for making it through the gauntlet.

You mention alot of things that really were the same exact way for me like sleeping eleven hours a day, convincing a doctor into giving me adderall & welbutrin, going through counseling (only a couple times), taking glucosimine condroiton, lightheadidness when standing up to quick, fatigue, feeling like a hypochondriac and not being able to keep up with a part-time job without calling out and coming in late..... even though I know I was busting my ***.

It's been about five months since I found out that I had Lymes....or atleast since I found out that the Lyme was still present in my body. I had the rash and was diagnosed 6 years ago but only treated for a couple weeks. Since treatment started I've have improved. My symptoms do come back once or twice a week so I can't say I'm cured but do feel better more often than not.

Anyway, I don't ever get to smoke weed anymore but in response to your friends comment it always seemed to make me feel better physically and mentally as long as it was done in moderation. Maybe once a week. I've always been able to do my schoolwork and anything work related much better after smoking weed, even like three days after. Since treatment began however I haven't smoked simply because I don't know if there could be any potential dangers associated. I wouldn't bother.

03-03-2004, 08:37 AM

Ticker, and BSimsons thank you so much for the responses.
I went and saw an infectious disease doctor yesterday who told me, I did not have lyme disease, and that my results were not positive (b/c) I did not have 5 bands, only 4. This guy was an a**hole who had no idea what he was talking about. He asumed that because I never saw a bullseye rash, and that I live in VA there is no way I could have Lyme. Anyway, I'm working my tail off trying to get in touch with a lyme literate doctor. Doesn't seem like any exist. Anyway, I'll keep everyone updated. BSimsons, it's really nice to hear that someone has experienced a lot of the same symptoms....What have you been doing to cure the most recent outbreak of lyme?

BeachGuy

03-03-2004, 02:26 PM

BeachGuy, I am happy to help.

Often, infectious disease doctors are not knowledgable about Lyme. Lyme Disease is the second fastest growing infectious disease in the US after AIDS. It is in every state. I cannot understand why doctors do not realize this.

I know of a Lyme doctor in Lutherville, MD who comes very highly recommended. I have the name of one in Portsmouth, VA who is supposed to be knowledgable, but that is all I know about this doctor. If you would like the name of either of these doctors, let me know.

03-09-2004, 10:45 AM

Ticker,
If you are referring to Dr. S he no longer sees patients in the Lutherville office. He now sees them in D.C. and you are right - he is a wonderful doctor. I have come a long way thanks to this caring doc and almost feel like my old self...
Stacey

03-09-2004, 11:22 PM

Stacey, could I get his phone number or, full name? I am willing to drive to DC to see a good doc. I've called a couple offices, but noone can take me right now. It sucks not having any doctor, and just taking these antibiotics everyday. I'm only taking 200 mg of doxy a day, for 60 days. Maybe i should personally up the dosage, and try to get a refill. Can you take more than one pill at a time?

Thats the hardest part about the antis...You can't eat within2 hours before or after the pill. So what time of day did you guys take the pills, especially those on high dosages?

thanks,
Beach guy

03-10-2004, 06:56 AM

You aren't allowed to eat within 2 hours of taking doxy? When I was on it I always had to eat a little bit of something right be4 or right affter i took it otherwise I would throw up.

03-14-2004, 05:26 PM

I'm taking the antibiotics that my doctor has given me. Doxy,Cefzin, Mepron and once a week I go and got a shot of Rocephin. The biggest difference for me is the Rocephin. I've noticed that one shot minimizes my symptoms for about 4-5 days. By the 5th-7th day I may feel like crap, but then I just get a couple cans of red bull to give me more pep.

03-15-2004, 10:15 AM

All right finally found a LLMD in Portsmouth, and managed to sneak in an appointment on saturday. We had a thorough discussion, and she upped by dose of Doxy to 200mg x 2 times a day (400mg total). She said it works best if you take it without food, but she's never met anyone who could take 200mg on an empty stomach without puking...and of course I puked trying to do it. She also added 2 cycles of the Z-pack (Zythromac). Today I got blood tested again to test for another Western Blot, vitamin b-12 and C deficincies, and other bacterial infections. She said the cominbation of 4 positive bands, plus all my symptoms makes her 90% positive I have lyme. Anyway, thanks for all the help everyone. I'll keep you updated.

BeachGuy

03-20-2004, 11:10 AM

Komondor, thank you for letting me know about Dr. S. I am glad to hear that he is your doctor, I have heard only good things about him. I hope you continue to improve!

03-20-2004, 11:14 AM

BeachGuy I am glad that you have seen a knowledgable doctor. Did she test you for the co-infections that ticks can transmit--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella?

When taking Doxy, do not eat dairy products two hours before or after taking it, or it will not be absorbed properly. Avoid exposure to the sun. You can get a severe sunburn in just a few minutes, even with sunscreen on. Also, do not lay down for at least an hour after taking the Doxy or you could ulcerate your esophagus. This happened to me and it is extremely painful. This should all be listed on the pharmacy sheet.

If it makes you nauseous, eat something substantial and non-dairy when taking it. Whenever you are on any antibiotic, make sure you take acidophilus capsules. They replace the good bacteria in the body and help prevent yeast overgrowth (which men and women can both get). The best kind to get are the ones that must be refrigerated. You can buy them in a health food store. Wait at least two hours before or after taking the antibiotic to take the acidophilus.

03-30-2004, 11:07 AM

Ticker,
You may be right to post the Maryland office as I am not sure we are able to post the name of the DC office where he now sees Lyme patients and his name will not come up in the yellow pages for this office.

I do not want to be banned again so I will ask the moderator. If we are not allowed to post the name of the medical outfit then we should continue posting the Maryland office and they will give them the number of the DC office...

How are you feeling? Are you still on meds or have you beat this?

04-05-2004, 02:51 PM

Hi Komondor, good idea about mentioning the Maryland office.

I am still being treated. Besides Lyme disease, I have had the majority of co-infections also. That is why I am constantly harping on everyone to be tested for them also!

How are you?

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