Hey everyone. I just got test results back and they said I tested positive for Lyme.
My symptoms are mostly nervous system related (ie. trembles, inner jitters, etc.) Does this mean I'm late stage?
My doctor prescribed antibiotics by mouth for 2 weeks. I've read that I may need more than that. I haven't picked up the antibiotics yet. Should I try to find a Lyme literate doctor to make sure I get the right treatment or go ahead and start taking the antibiotics?
Any help is greatly appreciated.
Posted by manybites (Member # 33750) on :
Yes you need an LLMD asap to treat lyme and coinfections as well.It is never just lyme.
Posted by Keebler (Member # 12673) on :
- Collect the Rx now from the pharmacy.
Also, if you can TODAY, pick up these hings you can find in most health and natural foods stores).
1. Milk Thistle (take now, best to start with a meal - it helps protect your liver and helps to lessen chance for a herxheimer reaction from the Abx).
2. Probiotics (take on an empty stomach, away from supplements and away from Rx
3. Fish Oil (be sure it is certified to be mercury free)
4. Magnesium supplement such as Peter Gillham Natural Magnesium Calm (this can help decrease tremors and helps the liver).
4. B-vitamin formula (take with meals)
5. START Rx Antibiotic (Abx), later tonight or tomorrow - after getting a couple doses of all these, I would start the abx, as directed.
Rx need to be several hours away from supplements.
Do not lie down for a while after taking the abx. Do not take with milk.
If you have the name of a LLMD, call today (or Monday morning) and schedule an appt. It often takes a while to get in.
Good luck. -
Posted by Keebler (Member # 12673) on :
�� Nutritional Supplements in Disseminated Lyme Disease �� -
Posted by lukewarm13 (Member # 36200) on :
wow thanks for the quick replies. this is my first post and I'm a little shaken up by the diagnosis; Yet relieved that I at least may have an answer to what is going on with my body.
Posted by Keebler (Member # 12673) on :
- As you start the abx, you may feel worse. If so, this is called the "Herxheimer Reaction" (or a "herx") from the borrelia spirochetes miffed for being under attack. They emit more toxins then.
That is why the milk thistle is so very important FIRST (if possible) to get your liver some protection in advance. You will then take it (or other liver support) all through treatment. The type may change at times, though.
Good water, good healthful foods will also help but you may want to prepare yourself for not feeling great.
Do avoid ALL processed foods, though, as they can create havoc. I hope you have someone to help you out.
There is so much to learn about this, even once diagnosed. As you suspect, it's far more complex than just two weeks of one single abx.'
I am inclined to also add GSE (Grapefruit Seed Extract) to the list of supplements. And, I'd also take that before the abx to get it into your system - but not at the same time as abx. It can be taken with other supplements, though.
This may help prevent the first dose of the abx from forcing the spirochetes to go into their protective cyst form, for which a different medicine is needed (flagyl).
But most MDs do not know this and think just one Rx is the ticket. Once you connect with a LLMD, you'll have a full protocol.
But, for now, I'm just thinking that the GSE might help you in some protective way. Just my opinion. GSE can be a bit rough. I'd get the liquid and just take ONE drop in a 1/2 cup of water.
You can search more about that through Google for key terms, copy and paste this set:
Borrelia, cyst, Grapefruit+Seed+Extract
Good luck. -
Posted by TF (Member # 14183) on :
Burrascano discusses the "stages" of lyme on pages 19 and 20.
Basically, your stage is determined by how long you have had the lyme.
Figuring that out can be difficult. When does your "story" of sickness, etc. start? That is likely the start date for your lyme.
If you have had problems for less than a year, then you are categorized as "early disseminated." If for more than a year, then "late disseminated."
I suggest you STUDY these Guidelines to learn about the disease you have and to learn what good lyme treatment looks like.
One lyme doctor that I know says that if you start the antibiotics, she would like you to stay on them until you see the lyme doctor. That can be difficult since the wait to see a good lyme doctor is nearly always well over 2 weeks.
If you are really suffering, you will probably want to start the antibiotics to get some relief. But, if you don't get any more meds, you will just be back in the same condition when you stop them in 2 weeks.
See how quickly you can get in with a doctor who will give you more meds.
I wish you the best. Folks here will help you any way they can.
Posted by lukewarm13 (Member # 36200) on :
Thanks! I haven't really had any symptoms that have stuck out to me until about 3 weeks ago. I started getting jittery and anxious feeling for no reason. I never saw a rash on me but I've had ticks on me countless times. I spend a lot of time outside.
I'm on the way to the Rx now to get these things everyone listed. Hopefully I can get in with LLDR soon. Thanks for the help.
Posted by t9im (Member # 25489) on :
Hi lukewarm13:
You are about to enter the world of the lyme controversy. While you have gotten by the first part (for now) which is the diagnosis next is the treatment.
It�s amazing there is a controversy to this insidious disease and I�ve found it easiest to show a couple of u tube video�s on the controversy.
It took us 8+ months, 9 MD�s, 2 Children�s Hospital�s before we started to learn about the controversy and find the LLMD for our daugher.
She is now in month 21 of treatment. She missed almost 2 years of school. The neurological symptoms started to alleviate after 10 months of treatment and while I think they are now completely gone we are not quite done with treatment.
The tingling numbness in arms and legs lasted up until just 2 months ago.
Posted by ralphi (Member # 33834) on :
That's so great that you got a positive test result! That's like gold around here.
I had similar symptoms as yours to begin with, but then I kept adding symptoms weekly until I had 25-30.
I've been treating for Bartonella since November and Lyme since Sept, but never had a rash or known bite. My tests were all indefinite or negative.
While you're waiting for your LLMD appointment, do some research on the co-infections that come along with Lyme.
I have a doc in Chapel Hill who has been great; send me a private message if you'd like the name.