I was just diagnosed today with Lyme. I am 23 years old, and I'm more than certain that I was infected when I was 9.
At age 20, I was diagnosed with idiopathic transverse myelitis after I became completely paralyzed from the shoulders down. I have since recovered about 80%, but I still have problems with numbness, fatigue, weakness, spasms, anxiety...the list goes on.
Now that I finally have this diagnosis, I want to find the most helpful/progressive treatment! My doctor suggests: Iodoral, Olive leaf extract, Meso Silver, and probiotics all for a month before deciding whether or not to treat with antibiotics.
I don't really know what to do at this point, so if anyone has any suggestions, please send them my way! I just want to feel better and get this thing under control.
Thanks, Meridia
Posted by Keebler (Member # 12673) on :
- How long have you been ill? You said it started at age 20 but it really matter how long you've been ill regarding treatment.
Is your doctor ILADS-educated? That means has he read all the materials written by ILADS doctors, for a start?
Have you been assessed for other tick-borne infections?
ILADS -
Posted by Dekrator48 (Member # 18239) on :
Sorry that you are now a member of our club...but it's good to get some answers, huh?
Do you have a Lyme literate MD? If not, please post for one on the Seeking a Dr Board.
The best thing you can do is educate yourself as much as possible about lyme and common coinfections like babesia, bartonella, ehrlichia and others.
Start by reading this lyme expert's paper....they are the guidelines for treatment by lyme literate MD's following ILADS guidelines....VERY IMPORTANT......
Take advantage of all the boards....general support, etc too.
The good quality probiotics are a good idea for sure.
Have you eliminated gluten and all forms of processed sugar/corn syrup from your diet?
It can help tremendously. Some people also eliminate soy, dairy, etc too.
You have come to the right place for support.
Good luck!
Posted by laurisabelle222 (Member # 16591) on :
I jsut wanted to say that you are in the right place. These people are wonderful with support and care. Posted by Sick Tick (Member # 23003) on :
Meridia,
Welcome, and I am sorry to hear that you have this diagnosis.
I second what was said above about getting tested for co-infections. I had Rocky Mountain Spotted Fever as well as Lyme, and apparently this is common.
You have made a great decision posting on this board....the support here can help get you through the worst of times, especially when you feel that others just do not understand what you are going through.
Posted by Karen Mc (Member # 23354) on :
Meridia, I am so sorry you are having to go through this as well.
Yes, you must find a LLMD (Lyme Literate Dr)
There are many "old timers" here that are a wealth of information (:
Check the internet and try to find a lyme support group in your area and start attending.
It sounds like you've already been through so much to be so young.
You will probably quickly find out that people dont understand this disease so you are going to need a good support group.
Good luck and God Bless,
Karen
Posted by Lymetoo (Member # 743) on :
I hope this is a lyme literate doctor... makes me wonder when you said you or he is wondering whether or not to treat with antibiotics.
Posted by daisyrlb (Member # 15686) on :
Meridia, That is so scary what you've gone through--paralyzed before...and the symptoms you have now. So very sorry to hear you have Lyme Disease.
There is hope and there is help. You can get better.
You will get lots of good information on Lymenet.
May God lead you as you make important decisions about your health.
I'm sending you a PM.
Praying for you.
Posted by Pinelady (Member # 18524) on :
I agree. If you have been down with it for 3 yrs.
I would not hesitate to find a LLMD who will get
you on your way with antibiotics.
Posted by meridia (Member # 20609) on :
Thank you for all of the replies/information!!!
The doctor I am seeing now is an LLMD. He seems to know what he's talking about in regards to the disease, I just don't know if his method of treatment is the best I can get. He practices holistic medicine and can't even tell me for sure if I will be put on antibiotics.
I've been dealing with debilitating Lyme symptoms since 2006, but I believe I've had the disease for the last 14 years.
I'm pretty sure I was assessed for co-infections during my testing. The only bacteria that showed up was borrelia burgdorferi, and there was a huge list of other bacteria that were not detected.
I just really want to get this show on the road! I feel like I've waited so long for a diagnosis of some kind, that now that I finally have it, I shouldn't have to wait any longer for treatment. I'm really considering getting a second opinion (treatment-wise)....I just don't know what to do next...
Posted by Amanda (Member # 14107) on :
Hi Meridia,
I'm so sorry you have this rotten disease.
I am going to tell you something hard to hear... Got your teddy bear? Maybe some nice tea? Something comforting. OK, here it goes.
Even among the Lyme Literate doctor group, there is a lot of variation about how best to treat this disease. The problem is that there is just so much we still do not understand about the disease, and this means that LLMDs will try a lot of different approches to get you well.
What works for one person, may not work for someone else. One person may need 5 years to get well, another person may get well in 2 years (I am talking about teh chronic stage of the disease, which sounds like you have).
What that means is, unfortunately, trial and error approach.
BUT, one thing that almost all the LLMDs agree upon is that patients will need to take antibiotics (abx) for anywhere between 6 months to 4 years to make significant improvement.
I think the best thing to start reading is Dr. Burrascanos diagnostic hints for treating Lyme, which can be found at a link mentioned above www.ILADS.org
Many people start out with an herbal approach to "ease into" treatment. When the lyme dies off, you feel much worse. If you start out with potent abx in the very beginning, it can leave you bed ridden for a while.
Another thing is you likely will need to take more than one kind of abx.
If your LLMD does not want to treat you with abx, I'd say you need to find one that will.
Given the fact that your symptoms seem heavily nuerological, you may need to do abx shots, or IV. Both of which are very expensive. You have a postive test, which means insurance will pay for an IV line to be installed and meds for 1 month, but many insurance companies will not pay for more than one month of IV meds. And you might need them for 6 months, then maybe switch to orals.
The worst part is that 99% of the medical community is grossly misinformed on the disease. In fact, the medical society that should be helping us, has actually been found guilty of numerous financial conflicts of interest violations, and even after being forced to review the science, they are still not trying to undermoine patients rights to abx treatment. This means that in addition to having a terribel disease, many MD will treat you like dirt because they think you are a nut job
Anyway, I'm so sorry you have to be part of this rotten disease. Read Dr. Burrascanos guidelines (www.ilads.org), and get more information on the "medical political battle" at www.lymediseaseassociation.org Posted by Amanda (Member # 14107) on :
One more thing, which can be hard to hear, again, get that teddy bear ready.
This disease is VERY expensive to treat. Many LLMDs do not take insurance. You might have to travel out of state to find one to treat you, so there are travel expenses. the abx can be very expensive.
IT might help to find some people near you with lyme. Many states have lyme support groups, which you can find at this website.
Posted by meridia (Member # 20609) on :
Thank you, Amanda! I didn't have a teddy bear near, but I do have a nice warm cup of tea! Haha!
This info is very helpful!
I'm on the search for a Lyme support group.
Posted by meridia (Member # 20609) on :
Have any of you had any luck with Social Security/Disability? Or any other form of financial aid for that matter?
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