Late stage lyme relapse

Hello,

My name is Lauras (lauraspnv), I’m writing for my Mum, she is 50 and she has late stage lyme (about 20 years). She was diagnosed for lyme disease in August 2011 after a bite of infected tick. Test results were shocking: doctors found two forms of bacteria: one newly infected and other form which seems that lives in body for years. She realised that she has lyme for about 20 years.

After three weeks of doxycycline treatment referred by doctor (which is inadequate in this case, I believe), she was sent home with no symptoms remained. Headaches, fatigue, joint pain disappeared. She was feeling good until suddenly, after four mounts in December 2011, disease relapsed very badly, nearly killing her, causing toxic shock syndrome, seems like micro insult, etc.

Like it would not be the worst, doctor refused to believe that she has disease for 20 years and it relapsed, saying that she was healed, referred her to other tests (not lyme) and after all - to psychologists. Trying to survive she started taking antibiotics on hers own lead. But after went out of hospital she has ceased due to the medical condition, badly affected liver, extreme weak immune system. Mum thinks that ongoing taking of antibiotics will completely destroy immune system.

My mother's health is going worse every day. It breaks my heart. We found another doctor infectologist, maybe he can help. We are completely lost now. I would please everyone to share an opinion about this. Maybe anybody can suggest something. Please...

I'm so sorry to hear of all your mother's been going through!

Unfortunately most mainstream doctors are uneducated about what Lyme disease actually is, and what it's capable of doing to the body. If it's Lyme that your mother is dealing with, then you need to see an LLMD, otherwise you likely won't be taken seriously, and your mom won't get the care she needs.

If you haven't already, it should help a lot if you take a look at the "New to Lyme?" thread - there's a lot of really helpful information and resources there - and with Lyme, research is your best friend as you usually have to be your own - or your mom's - health advocate! There you'll find information about herxing, or the herxheimer reaction - which is a worsening of symptoms due to bacterial die-off with treatment, which may be what your mother is experiencing, and may be part of why her health is getting worse.

Lyme disease can be pretty confusing and complicated - and there's no getting around it - you need a knowledgable doctor. I'd suggest starting a new thread titled "Looking for an LLMD in ____" to find a doctor in your area.

Your mother is lucky to have you on her side - hang in there, you'll find the answers you're looking for!

Thank you, yazzer, for your reply. Sorry, I forgot to mention that my mother lives in Lithuania. There are no Lyme specialists, and this is probably the first diagnosed case of such a late stage Lyme in this country. I believe that there are more people, suffering from this terrible disease, to whom it still remain undiagnosed. In Great Britain Lyme is more studied.

She found doctor that understands tick borne diseases. I hope that this doc can prescribe appropriate treatment.

Hi Lauras,
very sorry to hear about your mom.
Are ABX available in Lithuania without prescription? If yes, I would try treatment on my own without a doc (even though it may be risky, to me that seems better than doing nothing).
If not, could your mom afford travelling to Germany (where I live) and paying for an LLMD there? There are some, but they have to be paid, in most cases ABX have to be paid also. In your case, it may be possible that your mom sees the doc just once and keeps in touch via e-mail or phone to continue treatment.

Hi Lauras, being your own doc, you should stick to the following guidelines:
http://www.lymenet.org/BurrGuide200810.pdf

So, abx are available in your country without prescription?

There are two things that are of major importance if you do it without a LLMD:
1. liver enzymes, kidney and blood values should be measured by a lab every 2-3 weeks. If you neglect this, there is the danger that your mothers organs could be severly harmed (due to the strong antibiotics).

2. Be aware of Herx reactions (worsening of existing symptoms and occurance of new symptoms during antitibiotic treatment). This can become very very severe, including tough psychatric symptoms. If one doesn't understand what is going on, and that it is simply a physical reaction on the antibiotic treatment, it can be very problematic.

I am really asking you to take this very seriously. When I did my first treatment without an LLMD, I broke up because what later turned out to me to be a Herx made me suffer so badly and I didn't know that it would eventually become better. In fact, a herx is an indication that abx work. But it can last a long time and reoccur for months.

Regards,
Kern

you are welcome Laura. Regarding the ABX: you can study the document I posted, there are recommendations, depending on the stage of sickness. Let us know how thigs are turning out.
Regards,
Kern