What have you seen w/ multiple family members being treated?

[FallingApart]

Hello,

 

Currently we are treating DD and I both for Lyme co-infections. I'm wondering if you can share your experiences in what you have seen in terms of changes when starting the protocols. I've been so hesitant to admit this, but both DH and I feel that DD showed an almost immediate improvement once she started her meds. It's not overly drastic, but it is noticeable. (I wish there was some wood in the internet that I could knock on )

 

But, as for myself, I don't feel I have noticed anything at all. Neither good nor bad. Since I can talk and I am aware of what's going on, I am clearly a much better gauge than DD is. I have not been on my meds as long as DD - only 1 week for me. BUt I am surprised to feel absolutely nothing after watching DD have both a positive and a negative reaction.

 

So I was just wondering what you have seen in your experiences....

 

Thanks all!!

[Suzan]

dd8 - I didn't notice any changes in her except increased rashes for a month. Now she's falling apart (bossy, impatient, impulsive, irritated, etc.). She's been on her treatment for maybe 1 1/2 months. She does not seem to be any better at this point.

 

dd9 - I noticed an improvement in her behavior after about a week I think. I also noticed increased and changing pain and herxing for a month. She only complains of pain now once a week maybe(huge change from nightly suffering). She's been on her treatment for 3 months.

 

me - After a month, I noticed that I improved a lot. Much less twitching especially. But I was still very tired and got the buzzing in my back. I've been on treatment for 5 months. I still have a long way to go. I had the initial improvement after 2 months and then not much improvement since. But I have also been changing my protocol which has been stirring things up.

 

I started very slow, so I don't think I noticed anything after a week. What protocol are you on? Are you up to full dose yet?

 

Susan

[FallingApart]

Are there actual standard protocols? My most obvious symptoms have been odd neurological issues presenting as "Bells Palsy" - but so much more. So the 2 prescriptions I am on are Valtrex with Doxycycline. Plus some other supplements for vessel issues. But are there actual standard protocols where someone would be on the exact same thing?

 

If you haven't seen a huge improvement after 5 months, how long do you plan to do this for? I ask because of the cost of all of this. I won't stop any treatment for DD, but I will start to question things for myself months down the road. I'm glad to hear that you def saw something noticeable at certain points throughout the treatment.

[Suzan]

Oh, I think I misrepresented myself regarding my improvement. After 5 months, I am a lot better. I just did most of my improvement in the first 2 (maybe 3 months). Before this, I was so tired, I could hardly drag myself around. My brain fog was so bad that I was afraid I would lose my job. I had forgotten that also improved GREATLY in the first couple of weeks. I can function now where before I could barely function. I'm starting a weight loss program that I did not have the energy to do even two weeks ago. Slowly things are getting better. It's just the rapid improvement and drastic improvement seems to be gone so I don't notice as quickly. My feet might start to hurt and then I say "wow, they have not hurt in weeks!" (where the used to hurt every day). I do expect to be on treatment for anonother 6 months probably, and maintenance after. I've had this my whole life so I expected that it would take a long time to get rid of.

 

My LLMD also says that some symptoms are slower to resolve (like sensitivity to light, noise and ringing in ears are examples she used of my symptoms).

 

As far as standard protocol, I'm thinking of the three stage approach. This is antibiotic treatment that attacks the lyme in it's three stages of which I can only remember cyst right now. But there are 3 stages that all are attacked by a different abx which is why you hear some people on three types (I started with zithromax, amoxicilin and flagyl and I am also on plaquinil that busts cysts too). I know not all LLMD's do this just the same so I guess it depends on your case and doctor. If you have co-infections it may start our differently.

 

I hope you don't stop treatment for yourself but talk to your LLMD about your feelings and see what his/her expectations are for you and your symptoms.

 

Susan

[pixiesmommy]

My PANDAS/Lyme dd 10 has been on treatment for about a month. She has had rashes that come and go, and been a bit more emotional at times, but also periods of being able to focus and more even-keeled, which is new. She is definitely even more fatigued than when we began. She is on Ammox and Azith and Transfer Factors.

 

For myself, I have been on treatment for about 2 weeks and have been herxing pretty constantly. I have had a bulls-eye rash come and go on my chest once, have had waves of nausea, headaches, increased light sensitivity, need naps, have stiff/sore shoulders, sore swollen glands, pins and needles feelings and hot/cold feelings in hands and feet and the tip of my nose. It is literally like waves of symptoms that come and go for 10 minutes, half an hour, an hour... and then onto something else. I am only on Doxy at this point and will be adding Transfer Factors this weekend. BUT I have also had 2 days of sustained energy, enough to clean my house top to bottom! Whereas before, I was barely functioning and even the daily chores were being neglected.

 

 

I don't think any two people are going to react or herx the same because I don't think the disease manifests the same in any two people. You see this with PANDAS too- there will be some commonalities but a lot of it is unique to the individual too, with both the disease and the healing.

[sf_mom]

All three of our children have made gains towards recovery since being treated for Lyme. Our older DS has very minimal symptoms and hopefully he'll be rotating off antibiotics within the next 6 months. Our fingers are crossed that nothing changes for him. He was treated for PANDAS/Lyme for 19 months.

 

I have been on combo'd antibiotics since Oct. 2010. The fog has lifted for me and I am also doing much better. They have always suspect that I have co-infections of Babesia/Bartonella due to clinical symptoms even though I have negative Babesia results and have not been tested for Bartonella. I am positive for Lyme/Myco/3 viruses. Between the children we have positive results of Lyme/Bartonella/Babesia/HHV6/Coxsackies. As I improved it became obvious that I was feeling better on tindamax than off and that was a clue to our Dr. I was getting cross-over effect from the antibiotic and most likely had Babesia. Most recently they've added 'Crypto-plus'... herb to treat the Babesia. Since its addition, I have had an increase in symptoms that are specific to Babesia: deep bone pain in thighs and headaches that are so intense they will wake me up at night, dizzy spells, fatigue and just not feeling well. I am currently only at half dose of the Crypto Plus and I'll be adding an additional antibiotic next week and expect things to be much worse for a while. I was already warned by my Dr. that this will occur. I am also to expect an increase in Bartonella symptoms as we treat the Babesia and again this would be due to cross over effect of treatment.

 

So, I'm much better with setbacks.... I was told at least another 10 months of treatment. I suspect it might be longer.

[lyme_mom]

Are there actual standard protocols? My most obvious symptoms have been odd neurological issues presenting as "Bells Palsy" - but so much more. So the 2 prescriptions I am on are Valtrex with Doxycycline. Plus some other supplements for vessel issues. But are there actual standard protocols where someone would be on the exact same thing?

 

If you haven't seen a huge improvement after 5 months, how long do you plan to do this for? I ask because of the cost of all of this. I won't stop any treatment for DD, but I will start to question things for myself months down the road. I'm glad to hear that you def saw something noticeable at certain points throughout the treatment.

My son had bells palsy and he was in 2 antibiotics to kill it. That's a very serious symptom.initially he did not fully respond to the Lyme meds even after getting a picc line so they added rifampin because it can cause palsy too and he got better.

Edited March 24, 2011 by lyme mom

[FallingApart]

Thanks for your replies. This might be a helpful post for all families going through this and now I can add to it as well. Pretty much right after I wrote this, I did see a herx for myself in the form of joint pain and skin issues. But I also have seen subtle positives as well - more energy - I didn't really realize I didn't have energy - I attributed it to the horrendous PANDAS situation that we live in, and DH says I have more smiles and I even gave up wine for Lent.

 

But the big one that can't be denied is around my Bells Palsy. I still don't have a face, but just tonight I noticed that my nose is not leaky for the first time in 5 years. I think this is a big thing!!! I'm not too particular about what I see, I just want to see something and now I have. I love reading all of your stories.

 

I think it would be terrifying to see your child get Bells Palsy. It was so scary for just me, until we identified it. I'm glad his resolved!!!!

[lyme_mom]

I assume you see a llmd and I dont know how long you have been treated but my son's palsy was gone after a few months . He still has a hint of difference in his smile that he notices. :-) but I doubt anyone else does. He was treated for 2 years and three months and stopped all antibiotics in September. I think he is done w Lyme but I hope I don't speak too soon. He seems well in every way thank God. After the palsy went away he had other symptoms like body pains, brain fog and memory problems. Those r gone now and he is doing much better in school. I think palsy means the Lyme is neurological and u need to hit it hard w both doxy and an antibiotic that kills Lyme in tissue. A picc line is ideal unless the palsy is caused by bartonellA. I also was pretty sick w Lyme and I'm well after two years of treatment. I stopped in august and feel great.

[philamom]

I assume you see a llmd and I dont know how long you have been treated but my son's palsy was gone after a few months . He still has a hint of difference in his smile that he notices. :-) but I doubt anyone else does. He was treated for 2 years and three months and stopped all antibiotics in September. I think he is done w Lyme but I hope I don't speak too soon. He seems well in every way thank God. After the palsy went away he had other symptoms like body pains, brain fog and memory problems. Those r gone now and he is doing much better in school. I think palsy means the Lyme is neurological and u need to hit it hard w both doxy and an antibiotic that kills Lyme in tissue. A picc line is ideal unless the palsy is caused by bartonellA. I also was pretty sick w Lyme and I'm well after two years of treatment. I stopped in august and feel great.

lyme mom- so glad to hear you and your son are done with treatment and feeling better! I'm sorry I forget...but don't you have another child with Lyme? Is he/she still being treated? Again, great news!