I have posted a couple of times before, but will give some background since it has been awhile.
I have Lyme, Babs and Ehrlichia and was infected 13 years ago.
It is also likely I have had Lyme my entire life congenitally.
I have been taking Mepron, Biaxin XL and art for just over 4 months.
I have had several days lately where I am noticing some improvements.
At this point, I am still having Bab herxes (though milder each cycle) so I will continue
until they end and then will move onto treating the Lyme and ehrl.
My doctor and I (who is not an LLMD but is a member of ILADS and follows Burrascano's protocol) have not discussed IV treatment at all up to this point.
My question is, when or if ever should I bring IV up?
What warrants IV treatment?
I have read it is primarily for neuro symptoms, which I have many of, but my doctor has not addressed them as though they need to be treated seperately or differently.
Does IV speed up the healing process for most?
If any of you could offer info, I would really appreciate it.
Thanks so much:) Jackie
Posts: 209 | From maryland | Registered: Aug 2007
| IP: Logged |
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Hi Jackie. I would recommend that you bring your IV questions to your LLMD. Some push for it harder than others, just as some are more "aggressive" with treatment than others.
I don't think anyone but you and your doc can really answer "when it's time", but if you are not making progress on your current meds and if you have a lot of neuro involvement, bring it up and see what he/she says.
A couple of benefits of IV vs oral: the ability for the drugs to cross the blood-brain barrier and that they bypass some of the stomach/intestinal havoc that orals might yield.
There are, of course, concerns with IV's too. I got blood clots (DVT's) and phlebitis from a PICC line. The clots in particular were pretty darn scary. Make sure your doc tests genetic factors for hypercoagulation if you discuss IV therapy; as you know, lyme and company are said to cause hypercoagulation problems, too.
Like anything, it all comes down to risk vs benefit. Be fully aware of both sides and make sure your doc is too.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I've had Lyme undiagnosed for about 9 years. I've been quite ill for a long time. I tried oral abx for about 8 months with little beneficial result.
From time to time I would get anxious about not getting rid of Lyme & being ill permanently. I really haven't read many success stories from choosing a more aggressive therapy with abx. Either the spirochetes re-emerge at a later time or people do damage to their immune system from the drugs.
It's just my opinion that the abx don't always work & can make things worse. I'm not convinced that more is better in the case of chronic Lyme.
There are alternatives.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
I am slowly seeing some improvements here and there, but sometimes I feel like maybe I should be more aggressive, especially since I have had this for so long.
I have been experiencing a lot of on and off stomach problems on orals. I didn't realize IV was not as hard on the stomach.
sparkle7
I am sorry you are still searching for ways to get better after all this time.
Do you think IV treatment, while it doesn't always work, can actually do more harm? Besides the obvious risks?
Thank you both so much. I hope to hear from others, too.
Jackie
Posts: 209 | From maryland | Registered: Aug 2007
| IP: Logged |
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Ok here's my first thought. It's a c**p shoot. I did orals straight for 2 years with very limited improvement. During that time I had 1 main LLMD and consulted with a few others.
Here's what I found. The ones that tend to go for IV recommended IV, the ones that feel that detox is important recommended detox, The ones that felt supplements were key to supporting the body so it can recover put me on lots of supplements. The one that said "I am not sure of all the answers (and is an LLMD) but we can try different things" has helped me the most. They all helped becuase all of these things are important. IV's are not necessarily the answer. Many do them and relapse, many others do them and improve for long periods of time.
I am not suggesting you go to someone who does not know lyme. I am suggesting you seek the advice of someone who encourages you to get support from other professionals. There is not one doc/herbalist/chiropractor/nurse practitioner that knows everything you have to do to get well. It's too much to know.
Different docs would say different things in answer to your question "what warrants IV.?" There is no one answer. I think in Burrascano's guidlines he says if you are neuro or are sick more that a year. I fall in that category bit have not had IV. There are also folks who have had IV and still are not well ....... so that goes back to my 1st though above.
I do have one question. If you are in Maryland and there are several very good LLMD's around, why don't you go to one of them? Guidance by a doc with lots of Lyme experience is invaluable. Still you have to be the one to decide.
Hope this does not come off as ill intentioned .... it is not meant that way.
You have to find a few things that work for you and keep trying new things if you are not getting the results you want. And key is to have a group of experienced Pro's that can guide you and help you make your decisions.
I too wish this were all much easier.
Hugs, robi
OK now I am gonna continue my Bicillin herx ....... goodnight.
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
drained ........ i mean totally drained cannot get up from couch. Muscles feel like I was hit by a truck.
Had 2.4mu a few hours ago.
And you?
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
| IP: Logged |
I completely agree that there are so many different treatments and ideas. It gets overwhelming for me.
I do know my Non-LLMD Doctor has treated 1 or more Lyme patients with IV. So I guess I am just wondering what made them different than me, since she has not brought it up.
Perhaps for those she treated with IV it was a last resort.
I did originally seek a LLMD. Because of the high cost and the fact that my Regular Doctor is knowledgeable and has had success with her Lyme patients, I decided to stay with her.
although there are times when I think about "trying out" a LLMD to - like you said - get different ideas and opinions.
Your advice has been so helpful.
I think I may be beginning to understand the world of IV better now...
**Sorry about your Bicillin herx. I don't know how you articulated so well in the midst of it!*
Posts: 209 | From maryland | Registered: Aug 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Jackie
Printer-friendly view of this topic