Hello everyone!! I am looking for some honest answers, and would appreciate it if anyone could help me.
I have had Lyme for 20 years, ever since I was 9. Between then and now I have been bitten by deer ticks many more times. I went from one doctor to another, looking for some kind of help or relief. The answers I received varied: it was "just depression", all in my mind, I was a liar and making it up, etc. I have had so many medical tests done I can't remember them all. They would tell me to do yoga, eat better, exercise, meditate. Others would write many prescriptions to help with symptoms, but never the real cause.
In my early 20s I found a doctor who accepted my insurance. Active lyme and ehrlichia were found, and I sobbed because it was proof I wasn't crazy. He tried me on many antibiotic combos, but none helped, and I just keep getting worse. Then he stopped taking my insurance, so I couldn't go anymore.
I have no life. I always wanted to be a mother, but I don't think I will ever have that. I wanted to be a nurse or librarian, but am too sick for school. My peers have careers and families and Facebook full of good memories while I am stuck indoors, in pain and exhausted and no money. Lyme has stolen so much from me...
What I want to know is: has anyone else been this bad off, but gotten better? I know I will never be healthy or normal again, but is it possible to get well enough to have some sort of life? Or are there people out there who didn't get proper treatment in time, and the Lyme has won?
I just want to know what my expectations should be, realistically speaking.
Thank you to everyone who has read this. :two_hearts: You are all amazing, and I am looking forward to being active here, since I desperately need friends with Lyme who understand what I'm dealing with.
Posted by Keebler (Member # 12673) on :
- No, it is not too late. Yes, others who have had lyme, et al, for over 20 years (some in very bad shape) have also seen good improvements / remission in varying degrees.
It's a complex, matter, of course.. And there are no guarantees and some don't do so well. No two paths are the same yet there's enough in common to gain hope from many who have gotten better.
One thing for sure, most always, there are several things we can incorporate that can help in some ways, at least during times of not quite having a true plan or vision.
There are others ways to approach this, too, not just antibiotics if you don't have access to a LLMD.
Be aware that integrative doctors can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first. Some have learned on their own from experts in the field. There are many ways to acquire knowledge and most are eager to share basic details about their training. You want someone with a deep knowledge.
Some of the specialities above may not actually treat lyme yet, for things such as physical adjustments, it is just good that they are also LL, at least to some degree (to know never to suddenly twist the neck or spine).
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
RIFE machine links included. -
Posted by Keebler (Member # 12673) on :
RIFE Machine - Reference LINKS -
Posted by Keebler (Member # 12673) on :
- Be sure to post in "seeking doctor" to see if, perhaps, you might find who takes your insurance. Maybe - in the very least, if not a LLMD, you might find a lyme "friendly" doctor who could help ins some ways, and at least not demean you or be ignorant to the kinds of things lyme, etc. can be affected your body / your life.
Also check with all your area lyme support groups. Even if you might not be able to find a LLMD, some might have lectures or other programs that could help with your understanding of options.
Some support groups have a lending library for key books or videos of presentations at the ILADS conferences.
You might also ask if those near you use a rife machine and ask some questions of them.
By the way, I hope you know that the treatment you got from "regular" doctors is not unique to you. So many - if not nearly all of those with lyme have faced terrible verbal abuse and demeaning treatment. It's too bad, yet, it's very common.
Also even if not outright verbal abuse and on purpose letting you down, some doctors are not "allowed" to even consider lyme or other tick borne infections, especially when "chronic". It's politics, and greed, actually, on their part of the IDSA making the rules but many doctors don't have the time to really learn they aren't being told the truth. And some can loose their jobs if they learn more and treat outside of the very bad guidelines.
ILADS, on the other hand, are doctors who are truly lyme literate, though most insurance companies will not cover them.
Still . . .
Keep reaching out to find ways that might work for you. In some places, it is getting better but still it's often low key and word of mouth. Support groups are in the loop.
Take care. -
Posted by Lymetoo (Member # 743) on :
Yes, there is hope!! I believe I have had Lyme since I was 8. I did not receive help until I was nearly 50 years old!!
I did get better .. it took 4 years of treatment.
Now I'm having trouble due to Mast Cell Activation Syndrome, which was caused by Lyme. (I think)
I have had some very good years and I'm still alive and kicking!
Posted by MissVictoria (Member # 45232) on :
I'm sorry to hear what you've been going through. Yes, you can get completely better. I highly recommend going to a Lyme Disease specialist, which is called a LLMD (Lyme Literate Medical Doctor). If you post in the "Seeking A Doctor" forum on this site, people can recommend LLMDs that are in your area. Lucky you, you're in New York - there are a lot of amazing Lyme Specialists in NY. I'm going to message you now!
Posted by Robin123 (Member # 9197) on :
No, it is not too late! I went 25 years undiagnosed, went on an antibiotic and was painfree a week later!
The trick is to find the treatments that work for us. This is done by testing and trial and error.
People also treat naturally - many do the Buhner herbs, etc. There are lots of treatment options.
Best if you can know what it is you're treating - like you mentioned Lyme and ehrlichia. You can look at symptoms for other co-infections, like babesia and bartonella - there are others too - and see whether you think you match any.
Infections either show up in testing or not, so we often treat clinically, by history and symptoms.
You can use the Search function at the top of the page here to type in any word or phrase, click on Medical Questions, and then you can read archived threads on any topic. Just know we're all different in what we have and what we respond to.
Posted by lpkayak (Member # 5230) on :
Buhner is very inexpensive if you buy herbs and make tea. His books are available on Amazon and there is a Facebook group
Posted by kidsgotlyme (Member # 23691) on :
I have had lyme and co-infections since at least my early 20's but I actually think it was earlier than that. I didn't get a proper diagnosis and treatment until last year and am in treatment now.
I gave it to my daughter in utero and she was always sick with something. We got her diagnosed at age 13 and she was treated for five years and has her life back. There's always hope!
Posted by Catgirl2.0 (Member # 51843) on :
It's never too late, and I agree with Robin, the trick is to find something that works for you. I saw several top LLMDS (all helped me climb the ladder). I also tried energy treatments and the last one destroyed lyme, EM (eminusmirus.com).
Each and every single thing that I did helped get me to the point where I could live my life again. Just keep swimming (Dory). Posted by Mountainsky (Member # 51857) on :
Hi,
I know this post is almost 3 years old but I wanted to say I've been in the same boat but some circumstances are a bit different. Above all I absolutely get it (esp the part of seeing friends leading " normal" lives).
I just called to book a new consultation appt with another LLMD. I've been in treatment for almost 3 yrs with zero luck with my current LLMD. I feel horrible.
Its scary, frustrating and heartbreaking. I wish these doctors would take our insurance but I understand why they cannot, maybe some day policies will change. Too many people suffer.
Posted by Lymetoo (Member # 743) on :
Hope you found a good one!!
Posted by Mountainsky (Member # 51857) on :
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