Ali_D

Hey all, as I mentioned in my introduction I'm recovering from Late Stage lyme disease. I had it for about 5 months before I was diagnosed. I was just wondering if anyone else has had it or has it.

I also had 3 coinfections (other diseases transmitted by ticks), one of which I'm battling right now.
-Babesia
-Ehrlichia
-Bartonella Hensalea

Anyway just curious.

Cerberus 777

Yeah I had/have was a false negitive so went untreated for a long time. got the major weight gain tremors joint problems consintration problems ect.

I did the doxy and feel much better. Winter real suck becase of the ireverable joint damage Cissus is your freind.

Ali_D

I'm sorry to hear you were untreated for so long. I too had 3 negative results by Quest diagnostics, until I got my labs done at Igenex (a lab that specializes in lyme disease detection in California) and it turned out I had 5 positive bands, one with +++.

For at least 2 months I had no idea what was wrong with me and even my rhuematologist told me he didn't know and suggested I see a therapist. Later i was told I might have MS. It's amazing how little most doctors on the west coast know about Lyme.

I've never heard of Cissus, i just googled it. My naturopathic doctor has never mentioned it. I'll ask her about it next time I see her.

There are 3 forms of Lyme (intracellular and cyst for example) and doxy doesn't treat them all. Was the doctor you saw LLMD? If not I can get you in touch with one in your area that is. You really need a naturopath and/or a doctor of internal medicine to treat you properly.

Lemme know if you want more info on doctors.

Cerberus 777

yeah please let me know more it has been 8 months since i went through treatment and still don't feel 100%. I live in a small town so the doctors need to be tought by the client some times.

Ali_D

Man, I can really empathize with you. It's so frustrating having to teach your doctor and convince them how to treat you. I assume they've only prescribed you 200mg doxy per day. If so that's bacteriostatic and won't actually make you better. I'm in month 6 of treatment, currently taking 400mg doxy, 500mg zithro and 10ml atovaquone daily. I'll also be starting bicillin shots 3x per week soon. If you've had lyme for more than 4 months before having been diagnosed the expected treatment course is 2 years.

There are a lot of medications required and they don't come cheap either. There's a support group called ILADS. Just search for it on google. It is an excellent resource.

Let me know what town you live in and what your zip code is. I'll see if I can get either a referral from my doctor, or I'll go on some other groups I'm a part of and find some LLMDs for you.

Hang in there man.

Edit: Actually just follow this link www.lymediseaseassociation.org/referral

Register - it's free. And then based on your zip it will give you a list of ILADS doctors near by. You might have to make a long commute to see them, but believe me it's worth it. If you have problems let me know.

muscledbeagle

Guys
Really sorry to hear that you are having so much difficulty. It is very common out here on the east coast. Three years ago I was diagnosed with Lyme (multijoint-spine, shoulder, elbows, wrists, hands, hips, knees and ankles). Was hospitalized for three weeks to try to get things under control and to get the titers down. As it turns out, I didn't have Lyme but with genetic testing came back with reactive arthritis (HLA27B). It is a recessive trait that turns out to go back to a great grandfather who was wheelchair bound most of his adult life but of course that was many years ago.

For Lyme, the medical treatment outlined above is strong but effective. Being in medicine myself it was hard to adjust mentally and physically. In-patient rehab for 3 weeks after the hosptial and then outpatient occupational and physical therapy 6x/week for a year. Now I am back to the gym and doing well but obviously have spinal and joint degeneration that will eventually require surgery. Wasn't a candidate for rheumatoid treatment (Remicaid, etc...) since just prior to the joint problems I had undergo surgery and radiation for colon/rectal cancer. Therefore I have been left with Naproxin, Sulfasalizine, and Ultram.

To be honest, I have lost a lot of faith in Quest diagnostics. But I agree, the link given is an excellent source.

Hang in there the two of you and if you need anything that I can be of help with don't hesitate to ask.
Marty

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THE HAMMER

Ali_D

Yeah I completely agree with you about Quest. As far as lyme goes, thier tests are for epidemological purposes only, but most doctors disregard that and see negative results as an indication that you don't have lyme. The diagnosis really needs to be clinical.

As for me I'm moving to California and my doctors have referred me to an LLMD there that is well known for his success in treating lyme.

I'm sorry to hear about the arthritis, but I'm very glad to hear you're back in the gym.

Just out of curiousity what area of medicine are you in?

What kind of workouts are you doing right now?

Ali_D

Any luck on finding an LLMD?

Cerberus 777

Sorry I havent replied been real busy lately! I have been slacking on looking into more treatment trying to pretend there is nothing wrong. the Depression is getting worse so I better get moving on it.

Cerberus 777

BTW how are you feeling? treatment going good?

Ali_D

I seriously suggest you make your recovery your number 1 priority. The longer you have lyme, the less likely you are to recover completely from it AND the longer it takes to get better. Also you may have co-infections which will definately complicate the process.

I'm undergoing aggressive treatment right now, taking about 50 pills a day and 4 intramuscular injections a week. Most of the time i'm completely sapped of any energy and have barely any stamina with migratory pains but especially in the lower back, knees, elbows and feet (achilles tendons and plantar faciia).

That's part of the treatment though. You feel like crap, often times even worse before you get better. The past week has been pretty good though. My energy levels doing decently.

My doctor says he's okay with me lifting again in about 6 weeks, but to stay away from any power lifts for the moment. He said toning, so i'm guessing he means hypertrophy with light weight to begin. I'm going to have pain throughout the training process, but he said the pain I experience will not be permanently damaging.

So basically in 6 weeks i get to tough it out and hit the gym for the first time since July 2007. I'm really excited about it, and by late fall I should be done with my aggressive treatment. From there, just light herbal antimicrobials to prevent a relapse.

PS the longer you wait, the more expensive your treatment is going to be. My doctor has seen some people have to sell thier house just to get well.

Please cerberus, make this your priority - it's well worth feeling healthy again.

Cerberus 777

Do you know of anyone who has had good results with the natural remedies?

I took 400mgs of doxy for four months (even with allergic reactions) then i took zithro for a week with it and just could not move because my whole body was swolen. I've been blessed with being allergic to most if not all antibiotics.

Ali_D

Cerebrus, If your whole body began to swell when you took zithro, it's probably because you were having a herxheimer reaction. This happens when there are A LOT of bacteria in your body and suddenly a new antibiotic kills many of them. In this process a lot of toxins are released and the body usually swells up and you could also have psychological reactions as well.

Now if you're allergic that's another story.

I see a naturopath and an MD, they work together. Overall you're going to need antibiotics to get better. I really want to help you man, but I can't until you check out that link I gave you above.

I'm telling you ANY ILADS doctor will be able to help you infinately more than other doctors when it comes to lyme disease.

Check out this forum if you have questions. It's invaluable.

http://lymesupport.proboards77.com/v45index.cgi?

It's a lot like Intensemuscle but for people with lyme. You'd be surprised to see how many people have stories similar to yours. Seriously man, make this your number 1 priority. The longer you have it, the longer it takes to recover and the worse the process will be.

Cerberus 777

I went to the link you gave me and one of the doctors (only 3 in my area) is in the office i go. Ive made an apointment will let you know how it goes. I normaly see his wife and she said it was probably allergic reation. I will bring up herxheimer, cuold be that i was on a missionary trip in africa and my whole team got very sick for 4 days. I only was slightly ill for half the day. i was on 4 times the antibiotics tha any one else.

you have been very helpful thankyou.

Ali_D

No problem man. If he's affiliated with ILADS and is an LLMD (lyme literate medical doctor) he certainly will know what a herxheimer reaction is. If he doesn't, go to someone else! This is basic lyme stuff.

How are the rest of your buddies from Africa doing now? Are they having similar problems?

Keep me in the loop man. I know how much it sucks going through this. Let me know if you need more help or have more questions.

If you wanna talk just send me a private message and i'll give you my Yahoo messenger S/N

I'm here bro.

Ali_D

Ali_D

I have a few more links for you too for more info:

Other people's lyme stories
http://www.canlyme.com/kated.html
http://www.geocities.com/HotSprings/...ersonal29.html
http://www.canlyme.com/gazette_martz_2006.html
http://www.wildcondor.com/lyme.html
http://en.allexperts.com/q/Lyme-Dise...me-Disease.htm

More about Ticks
http://lancaster.unl.edu/pest/ticks.shtml

Organizations
http://www.lymediseaseassociation.org/index.html
http://www.ilads.org

Articles by MD's
http://cassia.org/essay.htm
http://www.ilads.org/press_10_06.htm
http://herballure.com/ubbthreads/sho...&view=&sb=5&o=

I hope these help too.

Took me a while to find them, but they're all marked as favorites for me now.

Cerberus 777

Thanks ill check them out. my buddies that went with me are fine. they were all healthy before we went. All recovered well, we were there for a month most were out for 4 days.

The IMing would be nice thanks.

Ali_D

Hey, just thought I'd give an update.

I'm still taking flagyl, levaquin, malarone, and bicillin IM injections. I'm doing much better and the progress is steady and forward. In time I will be tapering off of this and eventually will be independent from any pills of any sort.

I'm back in the gym lifting now, and in the past 2 months I have slowly become stronger and more able to do the things I used to love doing. This treatment is working.

If anyone has lyme, know that there is hope.

Ali_D out.

milkstud

Yea this guy is a pill popping mother, but it seems to be working, hes doing great!

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