posted
My daughter has been diagnosed with Lyme, Bartonella and Rocky Mountain Spotted Fever. She is 17 so of course we started out with her pediatrician. After many tests were done and her western blot kept coming back negative(she had 3 bands) so we decided to start researching LLMDs.
After talking to many people and doing extensive internet research we came up with a few names and decided to go to one that was recommended by two acquaintances that have went to this doctor.
We went to the LLMD and were very impressed. The doctor really seemed like they knew their stuff. They diagnosed my daughter and everyone was happy when we left the office because we finally knew what was wrong with her. This was in November.
My daughter was given 200mg of Doxy to take daily and we left the office feeling like we finally had some answers. Her Doxy was just increased to 300 mg in January because her Bartonella test came back higher than the original test.
Since then there have been a few things that have bothered me about our dr., phone calls not returned and some questions regarding labs. My daughter isn't getting better. More symptoms are popping up and she is feeling worse. The LLMD said she would feel worse before getting better at the original appt, but she didn't give us any type of timeframe. I'm worried because she is having more symptoms than the original ones and she is feeling pretty bad.
I'm not sure if I should seek another opinion or just stay with this LLMD. The research I've done online has been very positive regarding this LLMD. The problem with this whole disease is there is just not a cut and dry answer.
How do you know if you have found the right dr for you? I just feel so confused and the more research I do the more confused I get. And then I look at my daughter and see how she is feeling and I say there must be something else I can do for her and then I started thinking maybe I should look into other drs.
I'm just at a loss and could really use some advice from people who have been in my same shoes. Thanks.
Posts: 107 | From New Jersey | Registered: Nov 2009
| IP: Logged |
posted
"Her Doxy was just increased to 300 mg in January because her Bartonella test came back higher than the original test."
Doxy sent me to the floor with my bartonella. It has mild anti-bart activity, but I wasn't ready for the panic and anxiety it would cause when it got the bartonella mad.
What are her symptoms of bartonella?
There is no cut and dry answer because the co-infections can be more severe than Lyme itself.
Since your daughter is 17, I'm not sure if the doctor can legally prescribe the most commonly used drugs for bartonella.
When I was new to this, I thought it was going to be a few months and I'm better. Unfortunately, it's a lot of trial and error finding the necessary medications. In my opinion, we still don't know much about tick-borne disease.
It can take months or even years to fully recover. I'd worry more about RMSF than Lyme, but they are essentially treated the same. Bartonella is a nasty, destructive organism as well, and she may need combination therapy to address it.
We tend to focus on Lyme, but "co-infections" can be more serious than Lyme itself.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In my opinion, you want to go to a doctor who follows the Burrascano treatment protocol. To understand this protocol, read the following document:
It is a high-dose combination antibiotic protocol. This is the protocol that got me and a number of my friends well.
If you have not heard of Dr. Burrascano, he is considered the lyme disease guru of the U.S. and the world.
You need to ask what protocol your daughter's doctor follows. Then, read up on that protocol. You then can decide if you agree with the treatment he will use or not. There are a number of different lyme protocols and some doctors just "do their own thing." I did not have success with other protocols or docs who did their own thing.
I had undiagnosed lyme disease for 10 years. I also had babesiosis and bartonella. It has now been almost 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease. But, I went through 2 other doctors before I found the one who knew enough to cure me.
The doc is the key to getting rid of this disease. I can't emphasize this enough.
So, in order to evaluate your doc's treatment of your daughter, you will have to educate yourself on this disease. That means a lot of reading of the medical literature like the Burrascano Guidelines.
With my second doctor, I was acquiring new symptoms. I got to ask Dr. Burrascano at a conference how a patient on high-dose antibiotics could continue to acquire new symptoms. His reply was that if the antibiotic therapy was inadequate, the disease would continue to progress.
I had to evaluate my situation and study the Burrascano guidelines. I then came to the conclusion that my antibiotic therapy was inadequate and made the switch to the Burrascano doc. With him, I no longer acquired new symptoms.
It is not easy to say what is going on in your daughter's case. That would take a long discussion with you about all the details of what is going on. You see, you can actually feel worse when you begin lyme treatment due to the die-off of the germs. YOu will read about this in Burrascano.
So, there is a lot to sort out. As you educate yourself however, you will be able to assess how well this doc's treatment is working for your daughter.
In general, if a person has been sick with this disease for a while, they can expect to treat it for a minimum of 1 year. Some people treat longer than that, of course. So, it is not a quick fix by any means.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
At this point I don't know what symptoms pertain to which infection so I'm just going to list everything:
Flu-like symptoms in the beginning Joint pain (knees, hips, ankles, elbows, wrists, fingers) Swollen knees Headaches/Horrible head pressure Forgetfulness Loss of appetite at times Terrible mood swings (not sure if this is because she is a teenager, but the moods have gotten worse) Red round spot(looked like ringworm on her back), that disappeared and another one popped up on her stomach...she has no rashes or spots now Sensitivity to light at times Heel Pain
I think this is everything.
Posts: 107 | From New Jersey | Registered: Nov 2009
| IP: Logged |
posted
We are on our 4th LLMD for my daughter and I am about to be on my 3rd for me! A total of 6 LLMD's between the 2 of us.
We have given most of them about a year to see so I don't think we have switched too frequently.
I decide to move on when there hasn't been much change and/or if I feel the treatment isn't aggressive enough. If I am questioning the treatment and I'm not getting good answers back that seem reasonable, I think it is time to move on.
I have found that you can't just rely on an LLMD's reputation. We have moved on from an expert LLMD to a lesser known one and are getting better results, so far. I also like that our new one is more available for appointments and in between phone calls.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I agree with TF about Burrascano's guidlines. I keep them at my side. I check everything my doctor's do against those guidlines if things are not working. I have three doctors now.
My first 6 months of treatment was by someone the was incredibly bright but not necessarily an LLMD. I made some progress and I continue to see him because he is a voice of reason when it comes to very aggressive treament.
The general conclusion is that the cyst form of Lyme needs to be treated as well as the co-infections. If they are not treated you will not get better. The downside is that these medicines that perform these tasks can be very tough on your system.
My first doctor says that a very high percentage of people that take Flagyl for a long time get permanent neuropathy, so he doesn't like to prescribe it. He'll do it for 2 weeks with a 3 month break. Most LLMDs would say this is not enough.
I guess my point is that just because someone is an LLMD they don't have all the answers. I have 2 LLMDs and a rhuematalogist (sp). I think the rhuematologist is brighter than my LLMDs but the LLMDs are going to give me the aggresive treatment. I get my treatment from my LLMD and then I check with my bright doctor and he can tell me exactly what my symptoms will be at toxic levels. He is always right.
Lyme treatment is a risk sometimes. I've decided it's worth the risk but I keep a conservative doc in the loop so I don't destroy my body completely.
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
TLS,
(forgive my spelling...I have not time now to correct all the mistakes....its long...sorry.)
I'm responding as my 17 year old daughter, also NJ, went through the same thing...and is now lyme and co-infectoin free.
I had the same questions as you...as it did sem to get worse before better.. Her situation was that wae did not know she had RMSFever...at first as she was not tested for that. Glad NJ is finally testing for that. ONce we focused on clearing the co-infectons...First RMSF went, then Ehrlichiosis , then BART...
Many simptoms waxed and wained...and she herxed thru it all, but manageable...when we got the all clear blood work for all the co-infections..it tood 1 1/2 years of Doxy and a few switches along the way.
Her LLMD may be the same as yours...don't know...but I do say the LLMD tried various approaches with her...started with the cookie cutter approach as the DR B guidelines...then mixed it up when the co-s were not leaving, trying other things, as we also found that my daughter was not absorbing any oral meds or supplements wellk. This was the biggest problem, her intollerences to foods, allergies and meds....but we worked on all of thoses tings.
When we both(both had lyme) got rid of the last co-infection, Ehrlichiosis, the LLMD wanted to put us on a pic line with IV to go afater the lyme. WE both had nuerologic involvement and brain hypoprofusion.
WE decided to take a break...(this was March of last year) and told her that we wuld schedule our next visit in the end of AUg...so we could be in the sun and just get a mental break from abx. She warned us that we would most likely relapse...as we were feeling pretty good at the time.
WE said we didn't care, as we had it so long...badly...that we just needed time away...so we sent to Hawaii!!!Played in the sun....and enjoyed not taking one pill!
As we took the Spring/Summer off, I decided to investigate some things I learned here on lymemet about detox...feeling I wanted to rid our bodies during this break of any candida or toxins, related to taking so many abx as well as other things.
Went on a parasite cleanse...and both had amazing results. all my eye floaters went away...and cleared so many worms that my LLMD said I did not test positive fore....Well we both say them in the stools. So FYI: stool tests are not very accurate concerning parasites. I highly recommend this to everyone, to do a yearly or bi yearly parasite cleanse.
We went futher and went to see a ND who helped us with other detox issues...one who does Autonomic Response testing...and was able topinpoint the areas of prioroty in our health now.
She could tell we still had lyme...and my daughter still had bartonella from her energy testing...(blood test was negetive). I still had lyme. Which we knew.
Then we did a few detox type therapies...based on priotities...and worked on mental healing to free ourselves of the trauma this whole experineced caused us...(for all,l this disease causies more emotinal issues than we all recognise).
Clearing those emotional issues, and clearing the main debris in our bodies helped our immune systems finally work on their own. Our lyme and all infections are gone!!!!!
So work the system...and follow your own intuition.
Get the co-infections as gone as possilbe, then I believe you will knoiw when its time to clean up the terraine in your body...it will help your immune system fucntion. All the killing leaves more burdon on your body with the after effects...so knowyou willneed to clean up at some time.
Unfortunately my LLMD was a novice at detox...she believes in it slightly I believe, but did not think it would help us like it did. She did not believe that our lyme would go away likeit did. so I did more blood work as before...and it was gone that way, and it was gone withe the energetic testing, and we have had no herx since last March...almost a year.
LLMD's are wonderful, but do not know it all...as this problem we all face is individual. And it is not all lyme diesease. IF it was, one drug would get it for everyone! IT is about what we have before jlyme disease and our bodies oun make up that makes us keep these toxins and allows lyme and other things to flourish...whre others can have lyme leave very easily!
So keep a good relationship with your llmd, but move to another if you need to...and do not feel bad. they all want to help you...and will rejoice when you get better. Mine did, although I think she believes she sill see us in the near future...as she does not knoiw anyone who is lyme free who had our symptoms and did not specifically go after the lyme with IV...
Keep notes abouat your symptoms...and also work on detox and learn what you can here.
We are still here as we are doing the allergie -immune therapy, and prgressing fantastically...as our bodies were ready for the next step, of clearing the pathways so it can detox better...that was our problem originally.
Thats why I can tell yu emphatically, it is not just lyme that got ou into this problem...it was what yo had before the lyme...and what is not in balance in your body.
We found we both have KPU (pyroluria)...so those are things you can do later, after you work on those co-infections. Thats when all those symptoms will all be gone. Thats when you will experience what is lyme symptoms and what is other things.
Blessings lp
Posts: 1009 | From NJ | Registered: Aug 2009
| 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!
Printer-friendly view of this topic