Hello, For the past couple of moths I have been in treatment with a LLMD . My main symptoms are brain fog, a massive knee , and some vision issues.
I am on Zithromax and cefdinir. I was on a cyst buster but could not tolerate all three of them and therefor only take the Zithromax and cefdinir . I take many supplements and detox the best I can with herbs etc. I also fallow a low sugar / carb diet.
The doc. Is talking about wanting to put me on an IV for the swelling of my knee in particular.
I was wondering what people think about the effectiveness of IVs especially with the knee. He seems to imply that if it weren't for the knee he would treat with orals, but he feels that it can be difficult to treat the knee inside the synovial sac.with orals. Any experience with IV s and the head / knee would certainly be appreciated.
On a side note , I want to thank you all for being such a source of inspiration and information. You are all in my thoughts and prayers . Brian66
Posted by Lymetoo (Member # 743) on :
Sounds like a good way to approach it. Be thankful he is willing to do that for you!
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[ 09-07-2015, 03:20 PM: Message edited by: Lymetoo ]
Posted by Keebler (Member # 12673) on :
- Remember that the knee is not just the knee. That you can see and are made to know in no uncertain terms that the knee is shouting at you, it's just the tip of the iceberg. So, treat the knee aggressively and the aspects of lyme that you may not see or "hear" can also be addressed.
The knee may be demanding all the attention right now but this is still very much a full body systemic infection. IV may just be a very good benefit to your whole body.
Of course, have all the liver support on deck, too.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
EAR / HEARING SUPPORT, too. -
Posted by Brian66 (Member # 46111) on :
Hello, Tutu- thank you for your response and I agree I'm lucky he will do that for me.
Keebler- thank you for your input and I certainly agree that it is a systemic issue . Thank you also for the link!! I do want to treat aggressively , but don't want to push it to the point where i herx so badly that it could set me back. Lately , I seem to be on a perpetual herx and it is exhausting, which is something I am sure we can all relate to in that manner . Such a balancing act . Thank you again. Yours, Brian66
Posted by Keebler (Member # 12673) on :
- I'm the first one to say that a herx is best to be avoided. If a herx is too much, something is wrong. IMO. You might want to also consult an ILADS educated LL ND for a broader approach while also explore IV.
For some, the IV actually helps so much. -
Posted by Robin123 (Member # 9197) on :
Two things I have found useful for knee pain:
- turmeric powder in bulk - I get it at the health food store in bulk, dip empty 00-size capsules into it and take a couple a day. I get pain relief in my joints and muscles fairly rapidly. I don't think there is any limit in how much turmeric to take. It's a natural anti-inflammatory.
- lymph drainage massage with any experienced person took down pain around my joints for a couple weeks at a time.
You could try these easier approaches first and see how you do. I am not a doctor though and you do need to make decisions with your doctor.
Posted by Keebler (Member # 12673) on :
- Robin's suggestions are excellent.
In addition, be sure the SHOES you were are of excellent support. Do not go barefoot or schlep around in flip flops or slipper. This really matters, a good arch support and the surety that your feet will land fully support with every step you take.
Even from bed to bathroom, sturdy shoes matter.
and
SOTA LIGHTWORKS, just Google. Carol in PA has posted about this being so helpful. -
Posted by Brian66 (Member # 46111) on :
Hello, Keebler- thank you for you input . I have an appointment with my LLMD coming up and I have scheduled an appoint with a ll np, but that one is booking out pretty far, so I may need to make a few more calls.
Sound advice about the shoes and I could not agree with you more. I wear a pair around the house all the time which I have done for most of my life. I do feel wearing the shoes around the house give me tremendous support.
Robin- thank you and I will check out turmeric due to those anti inflammatory properties . As far as the drainage is concerned, I will need to find someone with experience in that particular field of massage. I do feel my lymph drainage is partially responsible for my condition and certainly an area I will talk about with my doc. Thank you so much! Brian66
Posted by Keebler (Member # 12673) on :
- Glad to hear you are on board with shoes. I have dedicated "indoor" shoes, too.
Just to be clear, a ll np (nurse practitioner) is not likely to have the training & knowledge in herbal medicine as a LL ND would, but maybe a little more so if they are treating lyme since lyme requires so much nutritional support as opposed to a np in most other doctors' offices.
Of course, it depends on the individual. Find out more about the np on your case.
Most nurse practitioners are more into the Rx pharmaceutical world. Their training is not about nutrients / herbs.
[Unless they've studied outside of the "NP" training on their own] . . . They simply will not have the necessary information / education on all the ways to support you during a herx, for examples. They may have a few ideas, yet . . .
for someone with the full medical college herbal education, an ND will have a fuller knowledge base, and of course, also to be ILADS trained. If they are not ILADS LL, they just won't cut it.
Another kinds of hands on work would be this full body adjustment, and may be covered by insurance. Check their site for those trained in your area:
[this type is excellent for those with lyme as there is no sudden twisting of the spine or neck - which should never be done with some who deals with lyme]
Regarding posture, ergonomics, how you walk, move, etc. FELDENKRAIS is also an excellent method. -
Posted by WPinVA (Member # 33581) on :
I personally look back and wish I had done IV early on.
I did some late in the game and it helped a lot. Never had a knee issue like yours so can't speak to that specifically.
However, the heavy herx'ing is a big concern as it sounds like your body can barely even handle the orals. Are you detoxing? Can you pulse?
Posted by Brian66 (Member # 46111) on :
WPinVA- I am doing Pekana for detox and working my way up to 15 drops from each of the three bottles. I drink a tremendous amount of water and take alka-seltzer gold to ease the herxing-not sure if earth one has helped . I am going to start glutathione next week in the liposal form. I take some other supplements and a great plant based oil for 3-6-9 omegas. When possible I do workout in an extremely light manner just to force myself to more, but I can't tolerated it for too long and stay away from the aerobic- dr. B. Protocol in a sense .
Pulsing is something I will discuss with the doctor next week and hopefully we can come up with a plan .
Your point is very valid about IV and the possibility or herxing even more. That is probably my greatest concern.
Thank you. Brian66
Posted by terv (Member # 29410) on :
My son, who is 15, had/has two bad knees. They have gotten a lot better with orals alone. Omnicef, Zith, mino and Flagyl. Doctor pulses it all.
He is 15 so he has youth going for him.
Posted by Brian66 (Member # 46111) on :
Terv- I am glad you sons knees have gotten better and may he continue to make progress. Thankfully the protocol is working for him. If you can, could you share the pulsing schedule he is following? Thank you for your time. You could also simply pm me if you desire .Good luck to your son and me he heal swiftly . Yours, Brian66
Posted by Abxnomore (Member # 18936) on :
If your doctor is willing to prescribe IV, go for it. It goes directly into your bloodstream, by passes the stomach and more easily gets into places that are difficult for orals to reach.
Posted by Judie (Member # 38323) on :
I'd find out specifically what drugs the LLMD wants to use if doing IV.
My advice is to try as many drugs as possible before doing IV to see if you can even tolerate IV meds.
Instead of IV, I did IM bicillin (intermuscular) first.
I also tried IM rocephin and couldn't tolerate it at all.
The doc really wanted to do IV avelox. I'm soooo glad I didn't. I did oral levaquin and had such an advers reaction I couldn't walk for several months (see the first thread of the forum about fluoroquinolones).
When it came down to it, the only IV med I could even tolerate was doxy. It just wasn't worth it to me.
Good luck!
Posted by Brian66 (Member # 46111) on :
Hello, Judie- sound point about the IM option first and I will ask my doctor about that first and discuss other oral option- which there are plenty.
Abxnomore- thank you for your input after talking with my doctor, who knows, maybe I will have to go for it, but for now I am on the fence. Yours, Brian66
Posted by Lymetoo (Member # 743) on :
Judie is right about the fluoroquinolones.. Definitely steer clear of those.
Posted by Brian66 (Member # 46111) on :
Tutu- I will read the link and thank you! Brian66
Posted by Brian66 (Member # 46111) on :
Just read-omg
Posted by Robin123 (Member # 9197) on :
Just curious, re the issue Judie is bringing up - what is the best way or ways to test to see whether folks can handle the IV drug or drugs re any possible reaction or allergic reaction to it prior to fully administering them?
Posted by Brian66 (Member # 46111) on :
Good question! I will ask my doc. tomorrow and let you know if there are any tests Brian66
Posted by Brian66 (Member # 46111) on :
Hello, First of all thank you for all your input ! It looks like I will be doing another month to six weeks of orals that have been switched up to treat Bart. A little more aggressively along with some herbals and supplement support.
If that does not produce any positive results then I will be doing the IV route. I had a long list of questions and never got to robin123 question- sorry. I was slightly rushed. I realize that progress is measured in month/ years with this desease, but it sounds like my doc. Wants to be aggressive so it may not settle in as much. Key word may. H However, I don't want to go too aggressive and herx to the pint where I regress more. Again - balance. Thanks again, Brian66
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