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Lyme symptoms continually progressing and feeling alone.

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Posted 4/17/2014 9:03 PM (GMT 0)
Hi All. I'm new here, and really need some help. I'm feeling really, really alone! I've searched for support groups, or phone numbers, with no luck. Here we go..

I was dx with Lyme in 2008 (bitten again 2010). Took the doxy and told I would be fine. Although every year since I've tested positive for lyme. The drs say it's an "old" infection.
I've complained of pain in joints for years.

Most recently the worst has happened.

My hair has started to fall in strands. My eye started to twitch which is now in every muscle in my body. My memory and thinking is just off. (I've gotten lost coming home twice in the same day, this week) I go from happy to sad in .2 seconds. My heart flutters and beats hard for no reason. My face and hands feel "tight". Sensitive to light and focusing. The joint pain is excruciating. I'm so exhausted. Night sweats. Now day sweats too. Most recent a "lump" feeling in my throat.(I think that's it)

I'd like to think I take good care of myself. I drink green smoothies, I work out, I work, I'm a mom of 2 and wife.

At first I chalked it up to "getting old".
Last week I took a stand for my health and told the dr all these things. She said lupus. Or ms. and took 7 viles of blood.
Got the results. 3 anti bodies. 39 and 41 (now I know to ask!) She didn't tell me the 3rd. Again she said these are old infections. And I would be much more "sick if I had a Co infection or "chronic lyme". I have an mri tomorrow.

I just saw a lyme literate herbalist. She told me to go on the paleo diet . And do the Epsom and oregano oil bath. And gave me teas and tinctures to strengthen my immune system.
When I called her with the results of the bands. She sounded like she agreed with the doctor!
My husband has been distant. (it's not like I have a "real disease")
I live on an island off the east coast. I'm pretty secluded. No friends or family in the immediate area.
To see a llmd. It will cost so much because off ferries etc.
I'm willing to stick with the herbalist. I just need to know that she will actually help me and believe what's going on here!
Here are my questions:

1) Do you think these symptoms are lyme?

2)who can I call for support?

3) can I really get better with herbs?

4) how do I get my dr or someone to get me tested for co infections?

5) do you think I have co infections?

6) how bad (or what "stage") do you think I'm in?

7) how long before I get worse than this, If not seen by a llmd?

8) what will happen if I wait (any period of time)?

Any help, thoughts or ideas are greatly appreciated!

My apologies. If this intro. Is a bit confusing. I'm under a lot of pressure. And feel awful to boot!

Thank you!

All my Best!!




confused confused
Posted 4/17/2014 9:33 PM (GMT 0)
Hi I had symptoms similar to yours and mine went nuero. Chronic pain and dizziness, heart issues, chest wall pains, mentally disabled. I was impaired for about 6 months. I am still on antibiotics 9 months into it. Has not been easy but seen consistent progress thanks to my llmd. I hope the herbalist can help you. If you notice an increase in symptoms Id suggest going off island for a trip to a llmd. Good luck.
Posted 4/17/2014 11:12 PM (GMT 0)
You can email me, except that my yahoo email is "down" right now. I'll post another one.

I also feel very alone, though I'm dealing with it at present.

I have moments of intense depression.

The Paleo diet helps me, but that's because I have abdominal problems. Be careful not to go to heavy on fat or protein. I eat smoothies with one egg, to vary things. Make sure you keep bananas, fruit, and honey in the diet, bc you need some carbs.

Don't work out. You can't do it with Lyme. Do stretching or yoga instead, or some gentle walking with breaks. Seriously, do not work out.

Have you thought about seeing an LLMD? Make sure your LLherbalist puts you on antimicrobial herbs like Cat's Claw, along with herbs that address the coinfections. The key is to go slow.

I can be a little tiny support group!

I'll repost my email tonight.

Margaret
Posted 4/17/2014 11:14 PM (GMT 0)
I agree that you should find a Lyme literate doctor to test you, since they're trained to diagnose it correctly. Blood tests aren't reliable. Is there anyone inland where you could stay for a while so you could work with a good doctor to get the testing and treatments you need if it is Lyme? It could save you money in the long run if you got tested by a LLMD and then treated by one. You can start a new thread with the subject "Looking for LLMD in____" If anyone here knows of one, they'll let you know.

What type of exercising are you doing? You have to be careful not to over do it. Just do something mild until you get to a good doctor. That one telling you that you'd be worse if you had chronic Lyme and company obviously doesn't know enough about it. There's a wide range in how people feel. If the herbalist agrees with the doctor, maybe she doesn't know enough about it either, but if she's building your immune system up, then that's a start. If you want to list all the herbals she gave you, some on here might be able to tell you something about them.

I know that's not what you wanted to hear, but we're concerned about people in your situation. Many people have gone through several doctors before getting the help they need.

This is a great group of caring people on here, so keep coming for support and encouragement. Let us know how you're doing too. Good luck!
Posted 4/17/2014 11:15 PM (GMT 0)
PS Don't wait. In retrospect, I would suggest an LLMD and Lyme-appropriate testing first, and then you can go back to the herbalist.

Not sure if you have Lyme, bc I don't remember the bands.

Someone else has to look at those, or you can go to the introductory post and look.

Margaret
Posted 4/17/2014 11:47 PM (GMT 0)
Many of your symptoms are similiar to mine at different times through the years. I have been diagnosed positive via IGeneX, and I'm being treated by a local LLND. I"ve been getting great results, and I'm pleased with the lessening of many symptoms.

Do something. Whether it's a natural path, or with a medical dr and prescription meds. Find your path and try what's available. If things aren't helping, talk about it, and ask to try something different.

Don't give up. You can, and if you get treatment, you will get/feel better.

You have a lot of great questions. Many can be answered by reading the "New To Lyme" post at the LD's front page. Also, using the "Search" button for specific topics could give you lots of info in one place. I use that often.

Welcome, and ask away any questions or concerns. People here are great and very helpful.
Posted 4/18/2014 12:29 AM (GMT 0)
Thank you so much everyone!
I'm a little tired at the moment. But I will definitely be getting back to each of you soon!
I was really nervous to put myself out there like this. But.
I'm glad I did!
I truly feel the positive vibes!
Thank you!
Posted 4/18/2014 7:25 AM (GMT 0)
I'm glad you reached out to us! You have too much going on to do it alone. Keep us posted and ask as many questions as you need to.
Posted 4/18/2014 10:49 PM (GMT 0)
Lilbitlis,

I still haven't posted an email. Would you like to email me when I do? Obviously, you don't have to.

Margaret
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