Topic: Seriously need some Insight.. Totally spiralling downward.. LLMD is Stumped
lymetwister
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posted
I am on my 4th mos. of IV Rocephin 2gm and my 3rd mos. of IV Z-max 250mg daily. These 2 drugs I have tolerated for the most part, but the addition of IV Flagyl through me for a 5 day break from everything due to crazy crying, anxiety, and head pain from mars.
LLMD got more agressive after that pause and we tried it again with the addition of Plaquenil, Mepron, Artiminisin, and Flagyl again. Once again, I lasted 5 days and had to take 10 days off everything as I felt so Toxic and same symptoms as above.
What really makes me have to stop more than anything is the fact that my CNS goes Bezerk. I literally begin to feel like I have brain damage. To me it feels like I have been hit in the head with a 2x4 and that feeling like you just banged your head doesn't go away like it would for someone who wasn't sick.
I have now been able to decipher what I thought was anxiety is in fact not true anxiety. It is my Sympathetic Nervous system gone haywire. It never affected my sleep, but it now is. I go to bed and I get to sleep easy, but within a few hours, I'm awaken b/c I'm moving all over the place in bed. It's not Restless Leg, it's Restless Body. When this is happening, I'm still half asleep and just want to go back to bed, but it's as if my head is detached from my body. My body is just going on it's own. I lay there as long as I can.
When I finally decided enough is enough, I get up and I have to drink Coffee, which you would think would be terrible as it would worsen all of this, but it actually helps me deal with it b/c the Coffee wakes up my head so that I can keep up with the physical effects this Autonomic Sympathetic Overdrive it's having on my body.
LLMD is stumped and can't help me with this symptom for a while now. It is stopping me from treating aggressively and he thinks I should see a Neurologist for what may be some type of Autoimmune something or other going on. All along, it has felt like my body is attacking itself. I am staying on current meds for now.
My muscles are actually larger b/c it's like Isometrics in my body much of the day and now during my sleep.
I have tried to do so many things for detox as of lately and I don't know what to do at this point. I just ordered a Parasite cleanse and will try this.
I can handle the headaches, bouncing up and down sensation, eye pain, light sensitivity, etc. but this over excitation is beyond comprehension unless you could feel what I am feeling. I can best describe it like imagining you drank 20 cups of coffee every hour and just kept drinking 20 cups every hour throughout the day and when you went to bed you had 5 cups an hour running through your IV.
Loading up on Xanax and other Benzos just makes me tired, but doesn't touch this ramped up feeling. I have tried Beta Blockers, Alpha Blockers and nothing works. Low dose Percocet brings it down a little bit, but nothing more. This one symptom is what ruins each and every one of my days now.
I will see a Neurologist, but from my experience I will get no help this route. I don't get it b/c I thought the field of Neurology was all about this kind of stuff, but with all of my testing, all I get is alot of blank stares. I've even been told that my abnormal SPECT scan can be Normal in healthy people. If anyone has any ideas or suggestions, I would love to hear them. This is much bigger than a low magnesium problem. Perhaps I should just hold the Rocephin and Z-max and everything for right now and see if this settles down. I hate to stop everything and mess up any progress I may have made. Very lost and confused. My LLMD is stumped and doesn't know where to go with me. I'm on Medicare and can't switch Dr.'s, so I have to hope current LLMD can somehow figure something out w me. Neuro appt. is hard to get quickly and will be trying hard tomorrow to get this scheduled ASAP.
Thanks in advance,,,
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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seekhelp
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Member # 15067
posted
I really think he is bombarding with meds your body can't handle. I certainly don't have the experience to be able to help with major detox, but at some point, you gotta back off. What did the detox doc say?
Did they ever MRI scan your adrenals? Any real heavy metal testing ever performed?
Maybe you can't kill too much too fast and survive?
Does your LLMD ever consult with other LLMDs on super hard cases?
I really wish something would help you long-term. What a hellish road. I'm sure others will have much better advise, but I'm just wishing my best.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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blinkie
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I'm having similar issues after being on abx for nearly three years. I think my CNS is getting sensative.
I'll have those symptoms for a few days, then I'll get a few days' break where I'm fine and sleep ok, then it comes back. It's like my body can't stop moving more than a minute or two.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
I still think it's a detox problem or a side effect from flagyl. You can try tindamax instead of flagyl. Flagyl is hard on the CNS and nerves.
Or you can try grapefruit seed extract first and see if you respond to that. I hear some herx on it pretty good.
I've been worried about flagyl because of cns effects. Cipro was awful for my CNS issues, so now I am more cautious.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
Gary....sorry you are not doing well . It is terrible. I'm not sure what to say.....thinking of you. Take care.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
Just a thought.....maybe it is the zithromax. Maybe it is becoming toxic. I felt like I was jumping out of my skin between the ears and my irritability.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
There were certain drugs I could not take. They made me so much worse. Zithromax would take me from 80% down to bedridden in just a couple days. Could not tolerate it.
Same with Tindamax. It was horrible.
There just might be some drugs you cannot take, or maybe even a lot of them you cannot take.
Others I had good luck with. I especially loved the Ceftin family. Also the cyclines.
To this day, even though I'm better, if I get sick with something like the flu, I try to slow down my immune response, not speed it up like "normal" people do.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
How are your adrenals? I could see that type of overstimulated feeling happening with adrenal problems.
I had an issue with feeling overstimulated because of my adrenals. It wasn't nearly as bad as what you are going through though.
I am so sorry that you are having such a difficult time. I really hope that you find some relief.
Take Care!!
People had some good suggestions here. Maybe it is just that something you are taking is too much for your body to handle. There really are just some drugs that some people can't tolerate. I have a few myself.
The parasite cleanse is worth a try too.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Take a heavy L-Glutatione precursor
LOAD up on it....or nebulize it
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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posted
When my doctor started overloading me with meds for what they told me was "migraines" I felt like I was going crazy. I had a difficult time tolerating pretty much everything.
I supplemented what the doctors were doing with acupuncture. There is a specialization called NAET which did wonders for me. The woman who created the NAET idea claims that it can cure anything. I don't know that I believe that, but if you take it with a grain of salt, it might be worth a try. You can find a trained acupuncturist at: naet.com.
I'm sorry you are having such a tough time. Keep plugging, and keep advocating for yourself.
Posts: 4 | From Salem, MA | Registered: Aug 2010
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Tammy N.
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So sorry with what you are going through. I know the feeling of that overexcitement.....as if the body is mis-firing, and wired.
I'm surprised after your first break of Flagyl, your doc had you try it again with the addition of Plaquenil, Mepron, Artiminisin. That's very heavy-handed. If you had trouble with the one, why dump 3 more blockblusters on top of it the next time? Flagyl is known to flare CNS issues, that's why I haven't tried it yet. Too scared.
If you can, look into Qi Gong. It is a chinese exercise that is very calming. I have been doing it every day for over 6 years. I won't miss a day. It has made a huge difference in my life.
Best to you, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I have IV Glutathione and was using it for a while and stopped as it doesn't work like it use to.
Re: the 2nd run of Flagyl. I think that was a mistake in hindsight.
This feels like something is in my head literally. I wonder if the Parasite theory holds true. I will soon find out when I get all of the Herbs I just ordered yesterday.
Tammy, how do you learn this Qi Gong ?
Thx everyone... I'm holding all Abx for a few days to see what is going on.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
Don't know if it is true or not, but have heard that lyme is primarily in the cyst form in the brain. So, if you are using anti-cyst drugs like flagyl, it is going to give you a brain herx.
Flagyl can also cause peripheral neuropathy as a side effect, and it might be permanent. Read the drug info on this one. I switched to tindamax instead, for this reason. But now, I am even afraid to take it because herxing with muscle wasting is dangerous. Not everyone has this problem, though.
I personally think that long sick people have higher levels of inflammation, and that the treatment can increase those levels because of the immune response to dead keets. This is a problem area that has not really been researched for lyme, but it is very important for some patients.
Not sure what the answer is for you.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Well, the word you would be looking for would be excitotoxicity.
Possibly excess glutamate, but I know you are on Rocephin and Lamictal (both of which modulate glutamate).
It still may not be enough if you have underlying KPU and/or methylation issues, and on top of that toxicity.
I just don't think it's a good idea to keep pushing Flagyl when it's exacerbating CNS disease. You do need a cyst buster so you don't relapse though, so I think alternatives should be looked at; perhaps non-pharmaceutical to start?
Perhaps it's not flagyl but just terrible herxes, but even so, I think it's a good idea to try another cyst buster. If you have a similar reaction from something like GSE, that would say something.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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lymetwister
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I havn't had a dose of Flagyl in 3 weeks. This is not KPU.
Brain Herx, perhaps, but from what ?
I can feel weird stuff in the head. I don't know how else to explain it. The pain is not that bad, but it's some pressure and electrical like sensations that start in the front of the head and move around to the back.
Whatever it is, is causing the crying for no reason, the anxiety or sympathetic overdrive that does not respond to Benzos. Some of the symptoms seem to be positional or exacerbate with position changes. This crap has changed on my so many times in the last 2 1/2 years. I have never felt so much weird stuff in my head as I do now. If it's a Herx, I will see as I am holding everything.
Trying to get appt. with my old Neuro doc. He's on vacation, isn't that always the case ? He will be back next week.
Forgot to mention, I went to Hopkins ER with this 2 days ago and was tossed out b/c it was not considered a life or death Emergency.
Something has to give, thats all I can say. I can't live like this.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lymetwister
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I havn't had a dose of Flagyl in 3 weeks. This is not KPU.
Brain Herx, perhaps, but from what ?
I can feel weird stuff in the head. I don't know how else to explain it. The pain is not that bad, but it's some pressure and electrical like sensations that start in the front of the head and move around to the back.
Whatever it is, is causing the crying for no reason, the anxiety or sympathetic overdrive that does not respond to Benzos. Some of the symptoms seem to be positional or exacerbate with position changes. This crap has changed on my so many times in the last 2 1/2 years. I have never felt so much weird stuff in my head as I do now. If it's a Herx, I will see as I am holding everything.
Trying to get appt. with my old Neuro doc. He's on vacation, isn't that always the case ? He will be back next week.
Forgot to mention, I went to Hopkins ER with this 2 days ago and was tossed out b/c it was not considered a life or death Emergency.
Something has to give, thats all I can say. I can't live like this.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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I feel so bad for you. What are you taking to help detox? Have you tried a Pekana kit? Or burber & parlsey? I agree with the others that heavy detox must be done.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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posted
What kday is saying is that if you have an underlying KPU problem that what you're doing may not be enough for detox because those with KPU don't detox well. Also, psych issues can be a symptom of KPU.
I found KPU to be a HUGE piece of the puzzle for me.
I also like the pekana and burbur/parsley for detox as well as coffee enemas. I got a lot of help from the Hulda Clark liver cleanses as well.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
And KPU treatment can somehow (perhaps indirectly) correct the methylation cycle I believe. I'll bet your intracellular glutathione is low causing a cascade of CNS issues. A bag of IV glutathione is not going to correct this.
I know what it's like to be tossed out of the E.R. Gary. I had periods where I was in there several times a week. Eventually, the local E.R. just thought I was nuts, and even sent me home one time when I couldn't remember where I was or how to get home. You have something serious going on, and they can't see it or help you. Terribly frustrating.
[ 08-03-2010, 02:26 PM: Message edited by: kday ]
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MichaelTampa
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posted
If there is brain inflamation involved, would perhaps omega fatty acid supplements help? Really just trying to offer the idea I can come up with. Tough situation for sure, sorry to hear about it, just sounds crazy!
Posts: 1927 | From se usa | Registered: Mar 2010
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Tammy N.
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Hi Gary,
Regarding Qi Gong -- check out the national QiGong Assoc. website - nqa.org. I think it's a good place to start. I have the video 'Five Treasures QiGong: Discovering Qi Gong'. This was one of my first introductions. I later found a Qi Gong master and took a 6 week class, memorized a series of poses and practice them every day (about 20-30 minutes). I love this part of my daily life. It has grounded me tremendously. When a healing modality has been around for thousands of years, I think that says a lot. Qi Gong is the foundation for all of Chinese medicine and martial arts. Pretty amazing stuff.
Best to you, Tammy
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WildCondor
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Qi Gong is awesome, and can be very healing and balancing to do to get your mind of Lyme and your symptoms.
Gary I think you are on too much at once, and when you start these meds, it has to be one at a time so you can see what is causing what. I would stop them all take a week off everything and then start them back one by one adding one med per week until you can determine what is causing the anxiety symptom. My guess is Flagyl, but it can be caused by Rocephin or Zithromax as well, or the combination. Does sound like some NMH vagus nerve stuff may be contributing. The coffee and cigarettes have also got to go so you can peel off these layers of stimulants one at a time and see what is causing what! )
It will get better, this is a puzzle to solve one step at a time until you find something balanced that you can tolerate and move forward with.
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posted
I have the same restless body symptoms. Some nights I seem to fall asleep easily (no earlier than midnight, and some nights not until 3am or later), but as soon as I dose off, I'm awake in an hour or so and then I toss and turn for the rest of the night.
Some nights I fall asleep and am almost immediately 'jerked' awake, almost the same feeling you get when you just dose off and the phone rings. Even when I do fall asleep, it is often a restless sleep in which I can remember the entire night due to tossing and turning and multiple trips to the bathroom.
You might want to compare your symptoms to the lists below:
posted
Gary, Your symtpoms sound a lot like mine when I was herxing really bad. If it is too much, stop, take a break, and add one at a time slowly. Sounds like your body is getting overloaded with toxins way too fast, no matter how good you are detoxing.
Take a break, it should slowly get better. The good thing is, you are probably hitting something hard!
i also felt like flagyl and tini were causing permanent damage to my cns and that this was no herx. i stopped all meds for now.
Posts: 226 | From earth | Registered: Sep 2007
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posted
I came off 9 1/2 months IV rocephin and just spiraled down. The last 2 mos, coffee enemas saved my life. They have helped me more than anything I have done.
The point I'm getting at is detox. If your body has a problem detoxing (which I and my LD do), it can be a big problem.
Also as some have mentioned, your adrenals can raise havoc on sleeping. You need to have them checked, especially cortisol.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
mercury in the brain can do this. also- omega-3s have this same effect you're describing on me. they will on you too if you have pyroluria, as many lymies do.
Posts: 24 | From Maine | Registered: Aug 2010
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I am sure I have mentioned many times that hubby's worst symptom from the beginning of his illness has been tremors and myoclonus which have progressed to seizure-like episodes and dystonia over the years.
We just got back from a 5 hour appointment with one of the few LLMD neuros around. He had several suggestions for hubby. We haven't made these changes yet, but will be implementing them one at time over the next couple of months.
I really don't think you are having major detox issues. I think it is more an issue with which part of your brain the infections are affecting.
Hubby's new neuro was not interested in prescribing Parkinsons's meds -- especially since they have not worked in the past. He is convinced the movement issues are related to Lyme or babesia or bartonella -- although he is mainly focused on lyme.
The neuro felt that hubby needs IV meds -- but he pretty much agreed with us that blasting hubby with high dose multiple drugs was probably not the best thing to do. Add one thing at a time and make changes slowly seems to be the way to go.
I am undecided at this point about whether to add back either Cryptolepis tincture or Stephania tincture -- at different points in time those 2 herbs were almost as effective as the IV Rocephin. The Cryptolepis stopped hubby's tremors for about a month once and nothing had done that in the first 8 years or so of his illness.
If you can afford it then I would try various antioxidants to see if any of them help with the brain inflammation. Things like 300 or 400 mg of CoQ10 or pychnogenol. Also high dose vitamin C. Turmeric might be helpful as well.
It will be trial and error to see if any of those things help. Serial lipid peroxide tests could show if the supplements are helping even if symptoms don't obviously improve. Quest or LabCorp (forget which one) farms out that test to Genova Diagnostics (the old Great Smokies Lab).
Surprisingly the doc wants hubby to stop his Topamax seizure med that he started about a month ago. He thinks it is creating more side effects than it is actually helping. Hubby thinks it is what is making him feel so exhausted and making his muscles fatigue easily.
You might seriously consider whether the Lamictal is really doing you any good. The less symptom meds the less potential for side effects.
The other things the doc wants hubby to try -- first is low dose (10 mg daily) of lithium orotate. This is supposed to help detox the brain. It is available as a nutritional supplement from VitaCost.
2nd was low dose Naltrexone -- requires a scrip. This is to boost hubby's immune system. The doc will add transfer factor as well if the CD57 is still low (45 a year ago). We tried transfer factor 5 or 6 years ago but may try it again. The doc has ordered several immune system tests hubby has not had done before.
As for meds -- the doc wants hubby to continue on IV Rocephin and add in IV Zithromax. He will also continue on Factive and on low dose oral Tindamax and Coartem for the next 2 weeks.
We will probably take a break from malaria meds for a month or so until we see how hubby does on the Zith. He is only taking Tindamax 4 days per week -- not totally sure of plans for that going forward.
Hubby is going to repeat his SPECT scan -- it has been 2 1/2 years -- according to the neuro insurance will pay for that test once per year -- so if it has been long enough it might be worth you repeating that test.
If the brain swelling head pressure symptom is really bothersome then you might want to consider diamox -- hubby tried this back in his mercury toxicity days and did not like this med. According to the doc it will increase bloodflow to the brain -- I always thought it was used to decrease fluid in the ears.
I would suggest the herb passionflower for sleep. I mix up a sleep formula for hubby from passionflower, kava kava and 3 or 4 other herbal tinctures. But passionflower is the primary ingredient. You can use 7 - 10 droppers of that tincture by itself.
I think if I remember correctly that passionflower increases gaba. If hubby wakes at night he takes a couple of extra droppers of the passionflower extract in a little water and goes right back to sleep.
Much cheaper to just buy bunches of parsley at the grocery store than the tincture -- we get it at Walmart. Hubby just chews a few leaves a couple of times a day. It does seem to help with brain issues.
Can't remember if you have tried SAM-e or not. I just increased hubby's dose from 400mg daily to 800 mg daily. Seems to help since he is on higher doses of meds.
I agree that taking a break is a good idea. Then I would probably add back Lyme meds first for a couple of months before attempting to treat babs or bart. Personally I would probably stop the cyst busters for a while as well. You might do better taking something like Wobenzyme or lumbrokinase for a while before attempting the more toxic meds.
I know you want to be well ASAP but obviously the current protocol is not working.
Good luck and let us know what direction you end up going in.
This is not medical advice -- just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I have pots which is a dysregulation of the autonomic system so I can relate. Things that help me are anti anxiety meds at bed time, stretching, yoga and finding time to lie down during the day and sort of reboot the system. Hang in there.
Posts: 37 | From ma | Registered: Feb 2010
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posted
Yep know the feeling very well Gary. Going on my 5th year of this disease and what you describe is everything I've been through. I'm turning the corner on this part of the disease.
What I've learned is that some people just can't plow through aggressive treatment. Sounds like your nervous system is taxed. For me it was like a constant 24/7 herx. I had a very over stimulated nervous system. But it's getting better.
I have taking many breaks from antibiotics. The longest being a month. I suggest you back off the meds and start over slowly. It may be one med in paticular or a combination of them all. You may not be a candidate for combo thearpy. I'd also do a month of good detoxing. If you smoke, quit smoking cigarettes or cut down if you can. Stop the coffee which stays in the body a long time (6 hour half life).
Why add to the problem? I'd also ask your doctor to work you up for a Pheo or Pheochromocytoma. Pheochromocytomas can be found anywhere in the body, though most occur in the adrenal medulla. Even a tiny benign pheochromocytoma can make a person very sick.
The signs and symptoms of a pheochromocytoma are those of sympathetic nervous system hyperactivity: elevated heart rate and blood pressure and anxiety often resembling that of a panic attack.
Ask the doctor for a Clonidine Suppression Test for Pheochromocytoma. These type tumors are very small and hard to fine but that test is a very good one to detect if in fact it is a Pheo causing your nervous system to be overstimulated.
Good Luck hope it helps.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
You have gotten a truckload of helpful info here already, I would mention that some of us also have non-tick borne co-infections such as Chlamydia pneumonia. Check out this link for more info. but the main point is starting out slow to avoid negative impact on your ability to function. WC has mentioned a rational approach to avoiding excessive die off toxicity as well as medication toxicity. Here is the link http://tinyurl.com/33l2mhz
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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nefferdun
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Member # 20157
posted
Burrascano says when the neuro symptoms are out of proportion check for bartonella.
Perhaps you are killing back Bb and Babs which is allowing bartonella to emerge full blast.
Extreme nervousness, severe headache, insomnia (rather than sleepiness with babs) are all bart symptoms.
Don't be fooled if you do not have the common symptoms of bart like sore feet and red streaks - I didn't either. Look at your skin for unusual things such as loss of pigmentation, brown spots, stretch marks (have someone look at your back), tiny blood blisters, swelling that does not dent when pressed, spider veins, nodules under the skin that hurt when pressed, odd marking like chicken wire or stacked clams. . . .
Did your doctor look closely at your skin for indications of bartonella? Feel along your shin bones for lumps on the bone. If you find some of these skin changes, try treating with a bart drug but be prepared for the herx.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I'm sure others will have much better advise, but I'm just wishing my best.
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