LLMD visit. Was told lyme is gone and wants to treat other things. LF advice / feedback.

Went to the LLMD the other day just wanted to see if anyone had advice or feedback. I will post a TLDR first for anyone that isn't able to read the whole thing.




::TLDR::
Went back to LLMD a few years after being on doxy and zithromax solo for one year due to lyme mycoplasma and strep. some of the symptoms returned to a certain degree although not at the same level as before. Doc is not herbal friendly and seems to think that the exact same symptoms I am having are not caused by lyme since that is "gone" but from panic disorder.

I expressed that seems unlikely and does not make sense to me as the symptoms are the same so my options are to do nothing or he said he will give me a month of doxy to see if I respond to it and if not I have to try a week of clonazepam .5mg for panic disorder to see if it helps.



I am still trying to decide on what to do and also there are no other docs I can see. This is the only option I have and he did treat me before for a year with antibiotics with success.



*the full post*

A short history, had chest pains for years and other issues and dealt with them. One day years back my lymph nodes got larger than they normally are with no pain or tenderness and have stayed like this (even now 7 years later) also had lots of muscle twitching. I was air starved and had bad heart pain (dull pain, aches and also sharp jolts.)

Played doctor tag spending loads getting the "oh its nothing" response like many do until one doc did something amazing, actually listened to me and sent me for a western blot that was positive. Took it to this LLMD who looked at it and said I have lyme did an exam on my symptoms and said I have it for sure.

He put me on 9 months doxy and then 3 months zithromax 80mg daily. Big improvement. The horrible chest pain and heart palps drastically decreased once on them. The nonstop muscle twitching went down to
only happening 4 or 5 times a week to after a year on the antibiotics never happening. The constant forgetting what I was talking about and stutter was gone. My lymph nodes remained the same.

Over next 4-5 months on antibiotics and a few years after antibiotics, I was able to function much better I was glad the heart palps and heart pain was gone along with the nonstop twitching. I did notice sometimes little bits of pain would happen and slowly over time muscle twitching. During this time my sleeping and eating habits were not good due to my sleep patterns getting messed up prior to antibiotics. I also continued eating small amounts of sugar and drinking coffee which I think did not help.

I tried doing some herbal stuff also during this time like banderol and samento and results rna 4 seperate sprays daily which i started doing in the last few months. while taking these it seems the palps and pain have gotten worse. I have heard people say that if something is working that the symptoms will get worse but I don't know how valid that is.

At this time, the symptoms are back not as bad as before. For instance, I have muscle twitching around 30-40 times a day. I have chest pain with palps and it goes from dullness to sometimes tight pain and certain days better. Also have joint aches and popping and my sternum is able to pop like before.

Well I went to see the doc. Haven't been there in 3 years and was told to return if symptoms came back. I figured he would think it's back. From the beginning he seemed more concerned about that I wasn't working and still at home.

I explained with the palps and pain I didn't want to make it worse and I can't normally sleep he said it sounded like I used this as an excuse. Then after agreeing with me that I had lyme for certain the first time he treated me, he said it couldn't be lyme again because if it was it would of came back fast with the same level of the symptoms and stated if it was returning early why didn't I come back if it was an issue. He also said a year of treatment it was for sure taken care of.

None of this made any sense then he tells me that I have panic disorder despite having no panic attacks and wants to put me on clonazepam .5 mg for a week to see if it helps with the heart palps and pain because he says the mid brain is causing the problem. And he says you can have this without panic attacks.

I find this strange that the EXACT symptoms and manifestation of lyme (twitching heart pain joints very rare tingling in toes and ankle) that he agrees was lyme mycoplasma and strep before that he treated me for but now I have all the same symptoms in the same way except not near the level I had them before yet he says it is not lyme and panic disorder. He never explained how this panic disorder would cause muscle twitching and joint popping the exact things that happened with the lyme.

He also said he didn't write down about my chest pain during the first time I visited him as lyme doesn't manifest symptoms that way in the heart and it could of been something from the panic disorder brought on by lyme.

I brought up how when I had the chest pain and palps in the past it responded very well to the antibiotics. So how could it have been stress disorder when he said I had lyme? He said that he doesn't jerk around his patients and tells them what he thinks up front and it would be the same for a family member. I can appreciate that as i'm not thin skinned.

He also seems really against herbals I brought the ones I use along and he basically said without looking at them they are a waste of money. I informed him that I didn't think this was panic disorder that it's lyme. We talked for a while about this and he said what he could do is give me doxy for a month and if it doesn't work I have to try the clonazepam to see if it helps. He said I could try the doxy first.

As for my situation I live in a remote area so there are no other lyme docs and I have no way of traveling to go to another. He has treated me before with positive results and has helped lots of other people. Just wanted to see if anyone had any feedback or advice about this. Thanks.

Girlie said...
Since you can't see someone else...and he won't treat you...your only option is self-treating.

You could do consults with an herbalist via phone.



....maybe after a few months....you could go back - maybe you got a new tick bite plus symptoms?

(hint, hint)

I've never thought about talking to someone by phone. Do herbalists normally do this and is this something lyme patients do?

Actually I do remember a year after finishing my treatment while at the beach I went on a hill and 6 hours later finding a small tick on my ankle and got rid of him. I was thinking maybe this caused a resurgence of symptoms or such?

From the BuhnerHealingLyme website:


buhnerhealinglyme.com/resources/herbalists/

Girlie said...
From the BuhnerHealingLyme website:


buhnerhealinglyme.com/resources/herbalists/

Thank you a bunch I will have to check it out.

Thurso said...

Donjr said...
First off that llmd is not a good one, Bart is showing big time my opinion, you need Bart treatment, try lymogen and pens antitoxin it works well also lauricidin will help a lot. But you felt better because the Bart was being knocked down by the doxy and the Zithromax, goodluck.

Interesting. He did test me for bart once he verified that I had lyme he also tested for mycoplasma which was positive but bart tested negative. But I'm guessing like with lyme there can be false positives?

I actually was on lymogen a while back before I was able to get antibiotics it didn't seem to do anything for me but I did not take it regularly, as I was really bad about taking it on time and consistently. Maybe I need to try it again.

I have never heard of pens antitoxin. (I know that jernigan nutraceuticals had neruo antitox for sale back when i bought lymogen) I tried looking it up but couldn't find anything about it could you elaborate on it a little?

No, there are false negatives, not false positives.
You may also have bart along with the lyme and mycoplasma.

Thurso said...

Girlie said...

Thurso said...

Donjr said...
First off that llmd is not a good one, Bart is showing big time my opinion, you need Bart treatment, try lymogen and pens antitoxin it works well also lauricidin will help a lot. But you felt better because the Bart was being knocked down by the doxy and the Zithromax, goodluck.

Interesting. He did test me for bart once he verified that I had lyme he also tested for mycoplasma which was positive but bart tested negative. But I'm guessing like with lyme there can be false positives?

I actually was on lymogen a while back before I was able to get antibiotics it didn't seem to do anything for me but I did not take it regularly, as I was really bad about taking it on time and consistently. Maybe I need to try it again.

I have never heard of pens antitoxin. (I know that jernigan nutraceuticals had neruo antitox for sale back when i bought lymogen) I tried looking it up but couldn't find anything about it could you elaborate on it a little?

No, there are false negatives, not false positives.
You may also have bart along with the lyme and mycoplasma.

Ahh my bad that is what I meant but typed positives. I thought about bart but after seeing the doc I guess his reassurance that I just had these made me relax on it. I really need to look into it. And thanks for all your info I appreciate it.

From what I've seen/read over the past 4 years being in the lyme 'world'....people usually also have bartonella and/or babesia.
Not always...but most.