Im Brian from NH. I was a perfectly healthy, (no medical issues - no meds)guy until july of this year. I experienced severe flu like symptoms and went to the doctor immidiately. I had no rash. I had a complete physical, CBC, and a lot more tests over the next several weeks for parasitic, and food borne illness, hepatitis, lupus, EEE, WNV and finally Lyme. I dont know specifics, but the western blot had 6 or 8 bars total (Igg & IGM) This was late in August. I did have a large bullseye in mid agust on my thigh expanding all the way across my stomach and was immidiately put on the standard doxy 100mg x2 for 20 days. I began feeling better, then worse.

I began missing work until I went onto short term disability. Symptoms mainly nausea, night sweats, abdomonal pain like I drank poison, body aches and severe stabbing pain all over, plugged ear, teeth hurting. After some persuasion my doctor tested me for babesia and other co infections. He said i had antibodies against it but was not currently fighting Babesia. Yes, i was a little bit pregnant. I was sent to 2 infectious disease doctors, one at the famous lahey clinic. They said my symtoms were not indicative of lyme and the co infections dont get treated as they go away on their own. One agreed to give me a second round of Doxy beginning Nov 10th for 30 days.

After beginning my 2nd round of doxy 100mg x2 for 30 days, i started feeling great and often had days completely symptom free. Then I started new symptoms, lots of jerking and twitching all over and still feel lousy but better than before. All my joints are cracking constantly. My spine is burning and my neck is stiff and sounds crunching. Im finished with the doxy Dec 10th.

I saw my PCP yesterday and he was mad and frustrated. Im scheduled for a back x ray, kidney ultrasound, endoscopy, colonoscopy, nerve study, etc. Whats up? Am I getting better? Am I slipping? I spoke to a well knowm LLMD here in NH and he said im being treated and thats a good thing. he also said the constant stomach pain was not Lyme related.

I've lost friends, my GF, and now my job could be on the line and then the insurance will go. I will lose everything I ever worked for. Any words of hope or wisdom? Sorry for the long rant.

Best wishes to all and thanks for reading.

Brian

Sorry to hear you are feeling so bad, but I can relate to your situation especially the loss of work because of the weakness etc.

Like you I started with Doxy from my PCP!!, and it helped for the first few weeks than I got worse again. I saw a LLMD in July and had my diagnosis confirmed (not my PCP or Neurologist but my own research.)

My question to you is, your LLMD is she/he going to give you anything else?

You can check on the treatment suggestions on the ILADS website and there are many websites than can help you. PM the group leaders and they can give a list of links and more info.

I hope you can get the help you need, it is hard but this is a great place to get help.

Chris

From what I've read lyme can become resitent to antibiotics. Sometimes you have to trick them by switching them around or by taking 2 at once. I also read that those co-infections don't go away on thier own. That the co-infections can hinder the antibiotics against the bacteria. I also heard from others on these forums that infectious disease doctors are not very lyme literate. Don't give up. I'm working and dealing with this illness. I have days when I wounder if I can keep my job. I have to keep my job to keep my insurance and I have to keep my insurance to get better. The thing that bothers me is that I get treated badly at work sometimes. Co-workers get frusterated at my brain fog. I get tired of being judged when they don't even know whats going on with me. But I keep going because something has to give. Someday things will be different, someday things will be better, someday I'll be out of this mess. This too shall pass.

There are several methods of treatment, tho, and many people get well on a natural protocol as opposed to a conventional protocol. So, Brian, if you're interested in going that route, you can find an ND who is an LLMD, there are those who are out there. And that may be a solution.

If you are interested, I've collected a number of links that may help you in learning more about this disease, so feel free to PM me. Just let me know you would like them, and I'll be glad to get them to you. Also, as mict55 suggested, it's a great idea to get a list of LLMD's in your area so you can get more extended treatment and stop messing around with a doc who's going to get frustrated because he really doesn't know enough about what he's treating. Better for your own health to take those steps now and not wait until you're years down the road.

For me, it took me 14 years to determine what was going on, and because I can't come up with the proof, no doctor as of yet will listen to me. I'm researching my options for LLMD's in my area and am looking at perhaps scheduling an appointment after the first of the year. I'm improving with a natural protocol at this point. You can and WILL get better, but you'll have to do a lot of the legwork on your own, I'm sorry to say.

Smileanyway did make a good point about co-infections, too. So be sure to have your LLMD check you out for those. There are tests, tho they are often as unreliable as the WB test for Lyme, but you can and should still consider it.

Good luck, and if I can be of more help, please let me know. Shoot me a PM if you wish to chat or just want more info!

*hugs*

Jen

Don't give up! Ask one of the group leaders here for another LLMD in your area. I can't imagine why the one you saw said that the amounts and length of time you were/are on the Doxy would be adequate or sufficient except for the fact that you are in New England where the IDSA rules. Keep doing your research and keep a journal of all that ails you. Do all the tests to rule out other things but definitely find another LLMD.

I get bad stomach pains too sometimes. They usually don't last that long and do go away...to me...they are almost like really bad menstral cramps combined with food poisoning. I know you can only relate to about half of that! LOL...Point is...it is severe pain.

I'm sorry to hear about the GF and stuff but...ya know what?...If she wasn't willing to do the "for better or for worse" thing with you anyway...than I say good riddance! She wasn't worth it anyhow.

As far as your job goes...look into using the Family Medical Leave Act. It will enable you to keep your job and your insurance while out on extended periods of medical leave. The amount of time you quailfy for is dependent, I believe, on the number of months you've put in at your job and how many hours a week you average. It does NOT allow for wage compensation but at least they can't fire you and terminate your insurance. It is worth looking into. My knowledge of it is old, as I used it back in the late 90's. It was really a big help for me. I had not the foggiest clue what I was sick with when I was put in your position job wise.

Anyway, I'm glad you found this group. I hope you find it helpful. I am always available...feel free to pm me anytime...I try to get on daily, if not several times a day. You are not alone...

Some very good advise...

From what you have described, it sounds as if this is progressing rapidly. Your best option is to get with a well versed LLMD. Doxy is often used initially, but with symptoms that are progressing like yours, you are going to need stronger and more aggressive abx.

Considering a natural protocol in addition could be helpful too. I come from the North East myself, and it is sickening how stupid the docs there play...and forget about infectious disease docs - UNLESS they are infact LLMD's...

This is a really rough road that you have ahead of you, and you need to have people around you who are going to believe in you and be there for you, no matter what. So I do have to agree with dharma - if the GF left you, then it wasnt meant to be and you are better off...not that that helps how you feel...just facts.

Spend as much time as you can educating yourself. The more you know the more ammo you have in your arsenal. Dont take any crap from docs - not even your PCP = and if you can - get in to see that LLMD or find another one who will see you...because the bottom line is, the PCP will eventually conform to the ins co - and you will find your treatment stripped from you.

Also, to help with some of your pains - you need to look at your diet. Easy to make foods, processed foods, Gluten foods (breads pastas) could be contributing to the increased aches and pains and inflammation. Eat what you can in fruits and veggies - as raw as possible or lightly steamed. Half your weight in ounces of plain water daily. And definately look into natural protocols like Samento and some other things...

Remember, you are not alone - none of us are there with you phsyically, but we are here, and we understand...Always feel free to contact me for any reason...

Good Luck

Christine

I did have a question for christine or anyone for that matter, (perhaps I should even post in the other question forum now that I have formally introduced myself??).

Anyway, I have started samento about a month ago and am up to 15 drops per day. I have been better about drinking more water and my diet. Overall, I feel much better than I did a month or two ago. Could the wimpy dose of Doxy Im taking this time be helping? Could the constant joint cracking and body and muscle twitching be a herx reaction and toxins from die off?

Thanks again to all of you, I will post any further questions in the general forum.... My thoughts and prayers are with you all.

Brian

It's possible that what you're feeling is a Herx, tho it's hard to know, it's also possible it's just a side effect of the Lyme itself. I'd need a little more details to know more about what exactly is going on to be able to help you more. Also, yes, a small dose of Doxy combined with Samento can be helpful, but often, you do have to hit this disease from several points. If you are doing a natural protocol, you usually have to hit it with several things, and treat the entire body. If you are doing a conventional protocol, Doxy usually isn't enough to solve the problem, it usually requires several meds to help out, and over a course of several months to years with either treatment method.

Hope that can be of some help. If you need anything, send me a PM. I'm also glad to share what I'm doing naturally that's been working, and even over an 8.5 week period, I'm feeling better than I did, and I don't think I'm gonna die now! LOL

*hugs*

jen

Missy

Samento is a form of Cat's Claw. It's called TOA-free, and it's a brand name of Cat's Claw. It's been great for many members and helped quite a few of us. It's been included on many natural protocols and is becoming a staple of the natural protocols. One of the great things about it is that is it liquid, so you can really regulate the dosage easily, and it's a very pure form of Cat's Claw.

Oh, and the only dumb question is the one you didn't ask! Be well!