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The effectiveness of IV antibiotics

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Posted 3/19/2013 9:46 PM (GMT 0)
Hello everyone my name is Chris and i am from edison, NJ. Lyme disease has been my whole life for the last 8-9 months. My symptoms first started in late june, which was fatigue and testicular pain. I've been to dermatologists, neurologists, surgeons, infectious disease doctors, pain management doctors, sports injury doctors and a lyme literate doctor. I've had every diagnosis under the sun and after many many doctors who provided no help or were too proud to refer me I was diagnosed in November. The infectious disease doctor who issued the various blood tests knew nothing of lyme. She strung me along and after the low doxycycline dose of 6 weeks failed she basically said i cant help ya see ya. Ive ruled out all other possible illnesses because i got a lumbarsacral MRI and a pelvic MRI. What my lyme doc and i think is happening is the lyme disease settled in a micro tear in my adductor longus tendon which wouldnt be a problem if therre wasnt lyme. The reason is anyone who plays sports or has an MRI taken might show something minor because its just how they're made up. I'm currently on doryx, tinsedol and IV azithromyacin.I was on the oral anti biotics for 2 months and now i am on the IV and its been 11 days. I'd like to know the effectivness of the IV because everybody keeps saying ill get better but i cant believe them because ive had so many poor doctors, failed pain meds and dissapoinments i just cant. Chronic testicular pain has been very rough for me and i know other lyme people understand how i must feel. I know evryones different but id like to know people who the IV has worked for. i suspect i got lyme in mid june so 8 or 9 months and two months of oral. i am on a five week regiment of IV and am on day 11. how long will it be before im better or on the upswing?
Posted 3/19/2013 11:27 PM (GMT 0)
Hi Chris. I went through the same situation. many drs visits with no answers, and I also just started the IV treatment, along with flagyl on the wknds twice daily. are you seeing a LLMD? I wish I could answer your questions about the effectiveness of the IV's but like I said, Im just starting also. are you detoxing while doing the IV? and ask your dr if you can do herbals while doing the IV's and stay positive. like you, I have been sick for around 8 months, but now that Im really thinking about it, I had issues going for a while back, so I probably had it before it started giving me problems, so I dont really know. I wish you the best, welcome to the forum, Im new also and I have learned so much, and everybody is very nice :)
Posted 3/20/2013 12:12 AM (GMT 0)
Hello Chris,

Your story is all too familiar for many of us. I went over a year, saw 30+ doctors, and finally got diagnosed about 7 months ago. I was severely ill. I seriously thought that I was dying. Looking back, I have had symptoms for many years, maybe since childhood and I'm 34 now, so I think it will be a long road to recovery.

After 7 months of oral abx., I'm seeing small improvements. The Gi stuff-nausea, vomiting, pain-is completely gone unless I'm in a severe herx. Most of my neurological symptoms are sticking around, so I'm thinking that my LLMD may move to IV abx. I have heard the IV abx. penetrate the nervous system better.

As far as recovery, it varies so much from person to person that it is hard to know how long it will take. For some people it takes months. For other people it takes years. The key is not to give up and to stick with treatment! The good news is, you can get better. It can be a long, slow rollercoaster ride, but you'll heal.

Are you seeing a LLMD now? It's important to make sure you're seeing a LLMD w/ lots of experience and ILADS training.
Posted 3/20/2013 4:50 AM (GMT 0)
Yeah i am . Shes wonderful she knows all about lyme disease ,because shes an ILLADS member. Everyone else knew nothing of lyme or what they did know was way outdated. My infectious disease doctor at the time only thought lyme could be causing joint pain not testicular. Every other doctor was baffled. Finally , I found Dr. Z. and she knew alot about lyme ,because her daughter had babesia and lyme for a few years. It seems like it takes a lyme victim to solve a lyme victim. Kind of like to catch a criminal you have to be one. My acupuncturist had Lyme, my therapist fought with Lyme and her friend eventually died because of having Lyme for like 30 years. All i do is look to the day when I can do things again. My family has been as supportive as they possibly could have been and I am thankful for that. It's a life changing experience, no doubt about it. Everyone knows someone who has had lyme, my job is to recover and educate others about what it can do. Most people say a few weeks of anti-biotics and you'll be fine which is true if you catch it early. Most of the time it isn't though. I know in the long run what i learned from this experience will be beneficial. Having your health is immensely important. I wish you all well on your journies :)

Post Edited By Moderator (Traveler) : 4/21/2013 10:11:21 AM (GMT-6)

Posted 3/20/2013 4:57 AM (GMT 0)
Hm detox? ill ask my lyme doc about that what exactly is it?. I have a sweet tooth and its been hard to not have much sugar, but its worth it if its helping my recovery. This one doctor i was talking to about my pain, basically brushed me off and when i mentioned lyme he basically ran out the door and gave me some aveeno bullcrap. I'm 17 so i guess he just saw me as a stupid kid and when this is all over I'm going to go back to all the doctors who mis-treated me.
Posted 3/20/2013 7:34 PM (GMT 0)
Hi Chris! Welcome to the group. Thank God you found an llmd! I'm like you, when this ride is over I'm going to educate and help others! I'm even considering going back to school to become a health and wellness coach. It's needed!

If you haven't please read the New to Lyme thread at the top of the forum. It's important for you to detox, detox, and detox!

I'm on an IV therapy and starting to feel improvements. It took a while to find the right regiment. I also got a ton of labs done to see where I'm deficient and taking supplements.

You will get there! We all will.

Keep us posted. So glad you found this forum.
May peace be with you.
Posted 3/20/2013 8:11 PM (GMT 0)
Hi Chris,

Welcome to the forum. I don't really have any experience with IV ABX, so I will refrain from revealing my ignorance!

I wish you the best of success with your treatment!

Don
Posted 3/20/2013 11:06 PM (GMT 0)
Thank you everybody its nice to talk to other Lyme people. Its very isolating, I've been stuck basically at

home for 7 months. Kind of mentally and physically trapped. I'll indefinably ask about detox to my LLMD on Friday.

The Wryter, keep me posted on your recovery and experience with the IV's. I don't know why i didn't

contact other Lyme people earlier. It makes me smile like i haven't in a long time. Certainly a life changer.

It's insane how little some doctors know. Atleast this experience teaches me patience, which will be useful ahead. Thank you everybody.
Posted 3/20/2013 11:09 PM (GMT 0)
@the wryter, I have a question, Im also doing IV and flagyl. Do you herx a lot?
Posted 3/21/2013 12:38 AM (GMT 0)
Hey Chris, Stevia is a good substitute for sugar if you have a sweet tooth. Just make sure it's pure Stevia and doesn't have additives. I found it in the organic section of Kroger. I've also found that blending a frozen banana with almond or coconut milk is a good dessert. Some people don't even eat fruits because of the sugar, but I haven't been that strict with my diet.

Yes, detoxing is important. Basically, when the bacteria dies off, it releases toxins into the body which can increase and cause our symptoms. Detoxing is a way to help your body get rid of those toxins. Detoxing can help relieve some of the symptoms. The most basics are tons of water with lemon and Epsom Salt Hydrogen Peroxide baths (2 handfuls epsom & 1/2-1 bottle hydrogen peroxide in a large size bathtub). A sauna is also good. The heat kills the lyme and you sweat out toxins. The baths and saunas do actually kill some of the bacteria so they can cause herxing so just start slowly.

You have a very positive outlook, which will definitely help with your recovery! Take it one day at a time and NEVER lose hope. Just keep at it and keep fighting to get your life back!

Also, we're not supposed to mention doctors names on here. There are many reasons for this-some LLMDs like to stay as private as possible and this is a public forum, etc. It is okay to mention the public LLMDs that are well known and the herbalists that publish their lyme protocols. So, if you could please edit and remove your LLMDs name from your post to protect her, that would be great. Thanks!

Yes, it is completely insane that more drs. don't know about lyme disease. It's really ridiculous that so many people suffer like we have with no diagnosis or proper treatment. Hopefully changes will come! It's time!
Posted 3/21/2013 2:36 AM (GMT 0)
I think i have some epsom salts because of my eczema. Okay I didnt know ,but i took her off. At school, i tried as long as i could to stay ,but i couldn't live a lie and smile through it, some people just don't understand. I have a very supportive family , so I'm doing everything i can even though much of it isn't in my power to control.My CD57 was a 33, the last time i had it tested it said 45 , so its only a matter of time.
Posted 3/21/2013 4:20 AM (GMT 0)
I do herx but they aren't as bad as they used to be. I do a few detox foot baths a week and full baths. But I need a heavy detox...the neuro toxins haven't been nice to me. Looking forward to Colonics and the infrared sauna this and next week.

It's amazing how ignorant some doctors are.

Glad you have a supportive family. Mine lives 4 hours away and I think they are in denial that I'm sick. Thank God for friends...they are my family to me.

Just one step at a time Chris is all I could tell you. There are a few people on here that are symptom free or have seen those who were sick now healed people like Don. They pay it forward...that will be us one day!
Posted 3/21/2013 5:02 AM (GMT 0)
Since my symptoms were kind of perplexing, so many doctors were either too proud to refer me or just told me there was nothing wrong when there clearly was. My dad is one of those bussiness types who doesn't take no for an answer ,so without him I would have never got close to getting better. I just look forward to that one day this is all behind me
Posted 4/21/2013 2:38 PM (GMT 0)
IVs worked really really well for me. The issue was not how effective the IVs were, but finding a doctor willing to keep me on them for more than 3-4 weeks or at least until all of my symptoms had gone.

I had two Infectious Disease doctors refuse to continue my IV treatment even after I was re-tested triple-positive for full blown Lyme.

Their absolute refusal to acknowledge and treat my relapse is criminal if you ask me.
Posted 4/21/2013 7:27 PM (GMT 0)
Yeah my infectious disease doctor gave me the crappy western blot and Elisa tests and I came up postive all 3 times. Since my symptoms were odd she didn't believe I had Lyme at all. She had me on the lowest dose of tetracycline and after 6 weeks she said she couldn't help me; go back to your neurologist. Your an infectious disease doctor, I mean come on. Alot of other doctors would claim that Oh this isnt my field I cant help you , but this was her field. I sent letters out to my 20 doctors about Lyme my experiences and what they should know. Not one response. I will hate the medical system forever , because I have been manhandled by it.
Posted 4/21/2013 8:17 PM (GMT 0)
Lots of us have had similar experiences! I have chosen to use only Traditional Chinese Medicine and now have no desire to use Western Medicine unless it's a true emergency - bone sticking out through the leg (or arm or other parts), heart attack, and other things like that.

Infectious Disease doc's have to 'toe the line' with the BS that the IDSA puts out - "no such thing as chronic Lyme, and Lyme is easily gotten rid of with 6 - 8 weeks of abx" - so your experience is typical.
Posted 4/21/2013 8:25 PM (GMT 0)
Yeah I use acupuncture and I love it. It works well for my back pains. Well I try to educate people as best I can, like i have a bracelet website where I donate money to ILADS and include Lyme info packets with the orders. I grilled my infectious disease doctor in my letter. No wonder I didn't get a response. She is speechless
Posted 4/24/2013 1:34 AM (GMT 0)
Chris,
By any chance, would you mind emailing me the letter you sent your dr.? i have 2 drs. that I want to send a letter to, but my cognitive problems are too bad to write one right now. It would help if I had a format that I could just make changes to.
Posted 4/24/2013 1:37 AM (GMT 0)
Sure give me your email. I have alot ,but I will send you my letter to my pain management doctor and my infectious disease doctor
Posted 4/24/2013 1:46 AM (GMT 0)
Thanks Chris! I don't think we're supposed to post our email address in a message on here. But, if you click on my member name and then profile, my email address is there.

I need to send a letter to 2 previous a-hole neurologists that treated me like I was nuts and were very cruel. So, if you have a letter that starts with "Dear Mr. arrogant a-hole", that would be great , LOL.
Posted 4/24/2013 2:07 AM (GMT 0)
Okay I sent them. If you need anymore let me know :)
Posted 4/24/2013 11:49 AM (GMT 0)
Hi Chris,

My son (22) also has lyme/babesia/RMSF and possibly Bartonella. He did IV doxy for 9 months but unfortunately it didn't work.
But I'm going to ask about going back on IV because I do think its better. He's been on orals for 3+ years.
We live within 1/2 hour of you.
Email me if you want more info.
Can i ask who your doc is?

thanks
Posted 4/24/2013 7:56 PM (GMT 0)
Yeah sure, but you'll have to email me because we aren't supposed to mention our doctors names on here. Its for confidentiality reasons. I would be happy to give you her name. She is wonderful and I would definitely recommend her.
Posted 4/24/2013 9:34 PM (GMT 0)
hi, your email under your name doesn't work, can you click on mine?

thanks
Posted 4/25/2013 12:17 AM (GMT 0)
Hi Chris,

thanks. funny, we also see her but as a primary doc, she's covering for the other doc whose out till end of May...we see someone else for lyme.
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