posted
I apologize for this severely long post - but I need some help...
My post began as a response to Mimi's question on Topamax, but I am so sick, and I am so in need of some help that I'm posting my own question (along with what I posted to Mimi) here in hopes that someone may be able to help me figure out what to do.
I was finally diagnosed with Lymes, Babesia, Bartonella, and Erlichiosis in September 2005, as well as intestinal parasites and worms, and heavy metal poisoning. I was infected in September 1990, and was told I had Chronic Fatigue Immune Dysfunction/Fibromyalgia for the past 15 years. Besides the typical Lyme/co-infection symptom profile, I have severe Interstitial Cystitis and am near total adrenal failure, and my hormones are way out of balance; I have barely any Cortisol, estrogen, testosterone, or the precursors to those hormones, even with supplementation. My neurotransmitters are similarly screwed up - too much norepinephine, and almost no epinephrine, serotonin, or dopamine. My cellular integrity is so compromised that a slip on ice last winter split my knee open the entire width, down to the bone.
The worst part for me is that, since I started treatment, whenever I try to read or write (or do higher order thinking,) within 10-60 minutes I get extremely weak, nauseated, dizzy, horrible headache, and then start throwing up. The symptoms last for 24-48 hours afterwards. My doctor says that I have to stop all these activities for now, because she believes I am causing further damage to my brain and other systems. I don't know what's happening, or why, but I would really like to know, and to know what to do about it, and how to move towards getting better.
I was taking Ceftin for 2 months, then switched to Biaxin. I took those along with Albendazole and Tinidazole. I was also taking first Cortef, then adrenal glandular, and a lot of supplements of various kinds, most of which I have had to stop for the reasons listed below. If I can't take abx, adrenals, or anything for my neuro imbalance, then how can I get better? At this point, I'm ready to sell everything I own, buy a one-way ticket to Fiji, and go lay on the beach until I'm too sick to even move, and then off myself. This Is not because I don't want to live, but rather because at this point I am no longer living. I WANT to live - I want a LIFE. I don't know what to do.
I * think * I've had good doctors, infectious disease, GI and neurology specialists, and my pharmacologist is one of the best in New Mexico. I see one of only 2 LLMD's in Santa Fe, and she is supposed to be extremely good. (I like her, I just don't like where I'm at.) However, even with all the doctors I've beento, no one ever suspected the Topamax connection (I figured it out finally), nor have they ever figured out why, since my surgery, all drugs/supplements that affect neurotransmitters (and now adrenals as well) cause this gut issue. No one can explain the brain thing. Can anyone help? Do I need to get to San Francisco or Boston/NYC/NJ to get someone who knows what to do with me?
Here's the rest of the story: (written in answer to Mimi's Topamax question, but very relevant to my problems.)
I took Topamax for 4 years. I started it for what they thought was bipolar disease, which is now assumed to be from Lyme/co-infections, and later took it for migraines. It also was extremely helpful for the fatigue which has been (until recently) the worst of my symptoms - totally disabling. Topamax took me from non-functional to able to hike 3 miles 3x per week, and totally got rid of my migraines at 225 mg/day.
I never had a migraine until 4 months after I first got sick w/ Lyme. Once migraines started, I had them up to 4 times a week. Tried lots of things, but nothing helped. (Note: since I started abx therapy 3 months ago, I have migraines almost every day.) I did not have severe mania/depression mood swings until 1995, 5 years after I got Lyme.)
Topamax was the chosen drug because I had tried Lithium, Depakote, and Neuontin, as well as the tricyclic antidepressants and SSRI's, calcium channel blockers, and some other edgier stuff, and none worked very well or did anything for the migraines, bipolar, or other ``chronic fatigue'' or Fibromyalgia symptoms, and in the 3 years of trying these other drugs, I'd gained over 50 pounds. I am 5'3'' and topped out at 170.
Topamax was a lifesaver at first for me, and it helped so many things, I really wish I could still take it. At lower dose, 100 mg/day, my mood leveled off and my manias and suicidal tendencies all but disappeared. When they started using it for migraines, we upped my dose to 175 mg. At 200 mg, my migraines disappeared. In the first year on Topamax, I lost all the weight I had gained and was back down to my normal 115 lbs.
That's the good part. By the beginning of year 3 on Topamax, I was starting to have weird stomach pain and the feeling that my gut was being wrung out like a wet rag while acid was poured over it. (Same feeling as I have now....) I started to lose more weight, and got down to a svelte 102 lbs.
At the same time, through careful symptom data analysis, we discovered I was allergic to my own progesterone (as well as any other source,) - cyclically and upon ingestion of progesterone, I would flip into a manic tailspin, only to bottom out several days later, several thousand dollars poorer. I had a complete hysterectomy at 39, because we thought getting rid of my progesterone would stop the ``chronic fatigue/Fibromyalgia'' symptoms and bipolar. At that point I was taking 225 mg per day of Topamax.
Less than 48 hours after the surgery, I blew up to the point where it looked like I was 10 months pregnant with large twins. My gut was so swollen that my chest was pushing on my chin, and it was nearly impossible to breath. I came down with pneumonia, but the doctors could not understand what was happening to make me blow up as I did. (Think: Charlie Chocolate Factory and the blueberry girl...) I have never experienced pain like that in all my life, and I live with pain every day. This was incredible. I was throwing up and having diarrhea concurrently for several days without stop. In retrospect, the doctor thinks what happened was a result of Lyme disease. I was so sick and out of it that I don't remember much from those weeks.
By the end of 6 days, I was clearly dying, and IV antibiotics, antivirals, and antifungals only seemed to make me worse. Emergency surgery was performed; when they opened me up my entire gut cavity was rotting and full of pus (they said the stench was incredible). I lost several organs to infection, and they took out, cleaned, and put back my GI tract 4 times. They found fecal matter and a ton of yeast and vaginal bacteria in my gut and GI tract. When I came to, a couple weeks later, I was still in a lot of GI pain, but my white blood counts were normalizing.
All together, I was in the hospital for about a month, on a ton of IV antibiotics, antivirals, and antifungals, both before and after the surgeries, and was fed through IV. After I went home, I was unable to even get out of bed without help for a couple weeks. My gut started to swell WAY up again on several occasions, but again, they could find no cause. All the while, my gut pain kept getting worse, and I was losing more and more weight. From August 2003 through January 2004, I looked as though I was about 5-7 months pregnant, and kept losing weight.
I was in and out of the hospital several more times during those 5 months, and eventually bottomed out at about 85 pounds. Skeletal would be a kind description. At times they suspected colon cancer and Crone's disease, and I was put on high doses of Prednisone. When they couldn't find anything wrong with my gut, they first said it was psychosomatic, then suggested that I was anorexic (some weird sort of Munchaussen syndrome, I suppose). The final diagnosis was ``malabsorbtion syndrome''. It quite literally nearly killed me.
In January 2004, I checked into UNM Hospital for a week, had over 16 specialists, every test they could think of (still, no Lyme tests,) ate 4000+ calories a day of a Macrobiotic, sugar free diet, and still they could not find anything wrong. It occurred to me then that every time over the past 2 years that my gut had gotten worse coincided with an increase in my Topamax dose. When I suggested it to the UNM docs, they said it was totally impossible that Topamax was the cause. They told me to go home, write my will, and pray.
I went home, talked to my pharmacologist, and decided to wean off the Topamax. Within 24 hours of halving my dose, my gut started to feel much better and the swelling receded. Within 8 days, I had gained back 20 pounds and had NO pain. However, ever since then, I have had terrible gut reactions to most medications that affect neurotransmitters in any way. I have tried over 35 medications, all of which either cause the same gut problem, or I gain 10 pounds a week until I stop taking whatever it is. Most recently I tried Aricept and within a couple days, had the same gut pain. No one has ever been able to figure out why this happens, or how my body is being affected.
I don't know if taking the Topamax for those 4 years caused some weird permanent damage to my gut so that now I cannot tolerate so many medications, or if it is because of the Lyme disease, or how the two issues interact.
All I know right now is that I can not seem to tolerate any medication, and I kep getting sicker and sicker. Help?
Feel free to write me at my email address, since I don't always check threads often b/c of my reading issues.
-------------------- Forgiveness is the fragrance that the violet sheds on the heal that has crushed it. (Mark Twain)
"It's only after you've lost everything," ... "that you're free to do anything." (Chuck Palahniuk, Fight Club) Posts: 24 | From somewhere outside Boston, MA | Registered: Feb 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Morning Babe-
You have been through the mill, several times!
This will be quick as I will need to be working in a few minutes.
I think not having a correct diagnosis earlier is the more likely cause of your severe health issues. Drugs can affect us in strange ways when they are not the correct ones.
Are you being treated now. Lyme can cause severe mineral defieciencies. Antibiotics also either prevent absorbsion or run minerals out.
I have absortion issues so supplimnets are very important for me to get well
I started supplimenting selenium with my mag this week and almost immediately I saw some vision improvement. It has been at the same level for several days but the improvement is encouraging.
Perhaps working to rebalance your system and re-build your vitamin and mineral levels is the place to start.
My best friend had lots of gut and gyn, plus more stuff like you, issues before being diagnosed with lyme. She too is at a point where she is frustrated with her health and lack of wellness. I think it is normal, but certainly not fair or fun.
Each day is a fresh start, just live each one the best you can. Do something for you. It will be enough.
Mel ( Melinda)
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
lymiebabe, Please ask your doctor to look into homeopathic remedies. There are a number of companies out there; but they sell directly to doctors, not general public. If your doctor doesn't know how to proceed in this area, see if he/she is willing to confer with another doc. I would be glad to share more information with you through Personal Message. It sounds like you need an aggressive healing protocol, and I am convinced, through our experience, that homeopathics is the only way! Good Luck!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
From someone (me) who spent a long time persevering with homeopathy and isopathy/nosodes, I can say that in my experience, it does not touch chronic illness like Lyme and coinfections. I had temporary improvement, lasting max 2-3 months, in the years I used homeopathy with the *best* homeopaths/training institute.
Oh, it cost me a bundle too over time.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Homeopathy is just a step in the process. Besides taking abx you need to be focusing always on how am I going to detox now. Homeopathy will strengthen the organs and immune system so you can proceed.
It's a long process to wellness. It's also trail and error if you aren't using muscle testing for the bodies wants and needs.
You can't just take abx and get well from a chronic illness. It's not ONLY about lyme or this co-infection or that. It's a big picture of toxins, poisons, parasites, viruses, protozas, bacteria etc.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Big hugs and to you today. Your story is amazing. You are incredibly strong to have endured so many issues and pain.
I know what the gut pain feels like. I kept telling my ducks that it was like somebody was giving me an indian sunburn on my guts-constantly. I couldn't sleep it hurt so much.
Now I know the ketes love the gut. It's a nice anerobic place to hang around. I too was a crazy maniac. Crying, confused, mean outbursts...
My first lyme symptoms were migraine headaches for two weeks a month I'd lay in bed in flu like pain--although unlike you no triptans or topomax helped me...then it started to feel like encephalitis and went all month long.
My ducks kept saying I was fine and no damage was being done...even though in my heart I knew bad things were happening to me.
I have been in treatment since jan 06, slow progress but progress. I know I will live.
You will get through this, keep asking questions and being strong-take it one day or hour at a time.
Best, Kim
-------------------- We are spiritual beings on a human journey...
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hey lymiebab You sure have been through the mill. I am so sorry you are having a tuff time.
Have you tryed abx injection or IV that would bipass the stomach? other than your breif saty in hopital?
I am also at a point where my GI can't handle the abx anymore.
I am looking into rife and herbs. At first glance thought no way. But after reading so many people are being helped by this I am going to give it a try.
You also might want to go on diflucan as yeast can wreak alot of havic after abx use, and can mimic lot of lyme symtoms.
I hope you keep posting. I know its hard but you can get thru this. hang in there
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hey lymiebab
Pm me any time as I live on this site.
Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
Babe, a big welcome to you to the site; full of lots of good info/expertise!
Breaking this up for us neuro lymies who can't read as is.
quote:Originally posted by lymiebabe:
I apologize for this severely long post - but I need some help...
My post began as a response to Mimi's question on Topamax, but I am so sick, and I am so in need of some help that I'm posting my own question (along with what I posted to Mimi) here in hopes that someone may be able to help me figure out what to do.
I was finally diagnosed with Lymes, Babesia, Bartonella, and Erlichiosis in September 2005, as well as intestinal parasites and worms, and heavy metal poisoning.
I was infected in September 1990, and was told I had Chronic Fatigue Immune Dysfunction/Fibromyalgia for the past 15 years.
Besides the typical Lyme/co-infection symptom profile,
I have severe Interstitial Cystitis and am near total adrenal failure, and my hormones are way out of balance;
I have barely any Cortisol, estrogen, testosterone, or the precursors to those hormones, even with supplementation.
My neurotransmitters are similarly screwed up - too much norepinephine, and almost no epinephrine, serotonin, or dopamine.
My cellular integrity is so compromised that a slip on ice last winter split my knee open the entire width, down to the bone.
The worst part for me is that, since I started treatment, whenever I try to read or write (or do higher order thinking,) within 10-60 minutes I get extremely weak, nauseated, dizzy, horrible headache, and then start throwing up.
The symptoms last for 24-48 hours afterwards.
My doctor says that I have to stop all these activities for now, because she believes I am causing further damage to my brain and other systems.
I don't know what's happening, or why, but I would really like to know, and to know what to do about it, and how to move towards getting better.
I was taking Ceftin for 2 months, then switched to Biaxin.
I took those along with Albendazole and Tinidazole.
I was also taking first Cortef, then adrenal glandular, and a lot of supplements of various kinds, most of which I have had to stop for the reasons listed below.
If I can't take abx, adrenals, or anything for my neuro imbalance, then how can I get better?
At this point, I'm ready to sell everything I own, buy a one-way ticket to Fiji, and go lay on the beach until I'm too sick to even move, and then off myself.
This Is not because I don't want to live, but rather because at this point I am no longer living. I WANT to live - I want a LIFE. I don't know what to do.
I * think * I've had good doctors, infectious disease, GI and neurology specialists, and my pharmacologist is one of the best in New Mexico.
I see one of only 2 LLMD's in Santa Fe, and she is supposed to be extremely good. (I like her, I just don't like where I'm at.)
However, even with all the doctors I've beento, no one ever suspected the Topamax connection (I figured it out finally), nor have they ever figured out why, since my surgery, all drugs/supplements that affect neurotransmitters (and now adrenals as well) cause this gut issue.
No one can explain the brain thing. Can anyone help? Do I need to get to San Francisco or Boston/NYC/NJ to get someone who knows what to do with me?
Here's the rest of the story: (written in answer to Mimi's Topamax question, but very relevant to my problems.)
I took Topamax for 4 years. I started it for what they thought was bipolar disease, which is now assumed to be from Lyme/co-infections, and later took it for migraines.
It also was extremely helpful for the fatigue which has been (until recently) the worst of my symptoms - totally disabling. Topamax took me from non-functional to able to hike 3 miles 3x per week, and totally got rid of my migraines at 225 mg/day.
I never had a migraine until 4 months after I first got sick w/ Lyme. Once migraines started, I had them up to 4 times a week. Tried lots of things, but nothing helped. (
Note: since I started abx therapy 3 months ago, I have migraines almost every day.) I did not have severe mania/depression mood swings until 1995, 5 years after I got Lyme.)
Topamax was the chosen drug because I had tried:
Lithium, Depakote, and Neuontin, as well as the ricyclic antidepressants and SSRI's, calcium channel blockers, and some other edgier stuff, and none worked very well or did anything for the migraines, bipolar, or other ``chronic fatigue'' or Fibromyalgia symptoms,
in the 3 years of trying these other drugs, I'd gained over 50 pounds. I am 5'3'' and topped out at 170.
Topamax was a lifesaver at first for me, and it helped so many things, I really wish I could still take it.
At lower dose, 100 mg/day, my mood leveled off and my manias and suicidal tendencies all but disappeared.
When they started using it for migraines, we upped my dose to 175 mg. At 200 mg, my migraines disappeared.
In the first year on Topamax, I lost all the weight I had gained and was back down to my normal 115 lbs.
That's the good part. By the beginning of year 3 on Topamax, I was starting to have weird stomach pain and the feeling that my gut was being wrung out like a wet rag while acid was poured over it.
(Same feeling as I have now....) I started to lose more weight, and got down to a svelte 102 lbs.
At the same time, through careful symptom data analysis, we discovered I was allergic to my own progesterone (as well as any other source,) -
cyclically and upon ingestion of progesterone, I would flip into a manic tailspin, only to bottom out several days later, several thousand dollars poorer.
I had a complete hysterectomy at 39, because we thought getting rid of my progesterone would stop the ``chronic fatigue/Fibromyalgia'' symptoms and bipolar. At that point I was taking 225 mg per day of Topamax.
Less than 48 hours after the surgery, I blew up to the point where it looked like I was 10 months pregnant with large twins. My gut was so swollen that my chest was pushing on my chin, and it was nearly impossible to breath.
I came down with pneumonia, but the doctors could not understand what was happening to make me blow up as I did. (Think: Charlie Chocolate Factory and the blueberry girl...)
I have never experienced pain like that in all my life, and I live with pain every day. This was incredible.
I was throwing up and having diarrhea concurrently for several days without stop.
In retrospect, the doctor thinks what happened was a result of Lyme disease. I was so sick and out of it that I don't remember much from those weeks.
By the end of 6 days, I was clearly dying, and IV antibiotics, antivirals, and antifungals only seemed to make me worse.
Emergency surgery was performed; when they opened me up my entire gut cavity was rotting and full of pus (they said the stench was incredible).
I lost several organs to infection, and they took out, cleaned, and put back my GI tract 4 times.
They found fecal matter and a ton of yeast and vaginal bacteria in my gut and GI tract.
When I came to, a couple weeks later, I was still in a lot of GI pain, but my white blood counts were normalizing.
All together, I was in the hospital for about a month, on a ton of IV antibiotics, antivirals, and antifungals, both before and after the surgeries, and was fed through IV.
After I went home, I was unable to even get out of bed without help for a couple weeks.
My gut started to swell WAY up again on several occasions, but again, they could find no cause. All the while, my gut pain kept getting worse, and I was losing more and more weight.
From August 2003 through January 2004, I looked as though I was about 5-7 months pregnant, and kept losing weight.
I was in and out of the hospital several more times during those 5 months, and eventually bottomed out at about 85 pounds. Skeletal would be a kind description.
At times they suspected colon cancer and Crone's disease, and I was put on high doses of Prednisone.
When they couldn't find anything wrong with my gut, they first said it was psychosomatic, then suggested that I was anorexic (some weird sort of Munchaussen syndrome, I suppose). The final diagnosis was ``malabsorbtion syndrome''. It quite literally nearly killed me.
In January 2004, I checked into UNM Hospital for a week, had over 16 specialists, every test they could think of (still, no Lyme tests,) ate 4000+ calories a day of a Macrobiotic, sugar free diet, and still they could not find anything wrong.
It occurred to me then that every time over the past 2 years that my gut had gotten worse coincided with an increase in my Topamax dose. When I suggested it to the UNM docs, they said it was totally impossible that Topamax was the cause. They told me to go home, write my will, and pray.
I went home, talked to my pharmacologist, and decided to wean off the Topamax. Within 24 hours of halving my dose, my gut started to feel much better and the swelling receded.
Within 8 days, I had gained back 20 pounds and had NO pain. However, ever since then, I have had terrible gut reactions to most medications that affect neurotransmitters in any way.
I have tried over 35 medications, all of which either cause the same gut problem, or I gain 10 pounds a week until I stop taking whatever it is.
Most recently I tried Aricept and within a couple days, had the same gut pain. No one has ever been able to figure out why this happens, or how my body is being affected.
I don't know if taking the Topamax for those 4 years caused some weird permanent damage to my gut so that now I cannot tolerate so many medications, or if it is because of the Lyme disease, or how the two issues interact.
All I know right now is that I can not seem to tolerate any medication, and I kep getting sicker and sicker. Help?
Feel free to write me at my email address, since I don't always check threads often b/c of my reading issues.
Babe, yours is the worse story I've read on here in some time! My heart just aches with pain for ALL you've been thru & still going thru.
I'm on my way to nursing home now, will visit this thread again later. Hoping others will chime in now that I made it easier to read.
I don't think I read in your post that you had ever been on Mepron? Mepron helped my daughter with her migrane issues from babs. It was profound.
I understand you are way way beyond just dealing with the migranes but was wondering if you were adequately treated for babs.
Have you considered seeing Dr. K? the one GIGI talks highly of? he sounds like he takes a whole body approach including dealing with the heavy metal issue.
just a thought and I sincerely hope you get help soon. pattiecake
Posts: 687 | From PA | Registered: Oct 2004
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BostonLyme2005
Unregistered
posted
Sorry to hear you are not feeling well. I get that way too.
I am in my 4 month of Tetra...3 months of Amox before that....
Sometimes I think I am sooooooooo tired of this crap!
I am trying to look at it as 4 months closer to recovery...
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Your story is so upsetting to me. Makes me so mad that people are not getting the diagnosis early enough and the proper treatent.
I am with PattieCake...you needed to be treated for the Babesia before anything. They should have knocked it out with the Mepron.
At this point I am not sure if Mepron would be too hard on you since you have had organs removed. It your Spleen was removed and you have not been treated for Babesia...then you must find an LLMD that is willing to treat you for it.
The spleen in many cases helps people deal better with Babesia - it likes the spleen and I guess keeps it more localized there - if you don't have one it seems to affect people to an even larger degree.
I have had migraines a good portion of my life. The kind that start suddenly and leave me feeling like I am stroking out. Took Mepron and had some doozies while on it but it has made all the difference.
I also had breathing difficulties and Mepron knocked that out too.
Take care and I hope you get more help and start feeling better soon.
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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liz28
Unregistered
posted
Hi, I agree with the people who say your story is complicated. If you can afford Dr. B, please consider him as a starting point. And please read his 2005 guidelines, because those have been making a dent in many cases here.
While you wrote that you have been on 35 drugs, none of the ones you listed sound like heavy duty Lyme/co-infection treatment. Ceftin and biaxin are what you take for an average Lyme case, or to ramp up. Tinidazole is something you'd probably take after you've dealt with everything else. If you do have babesia and bartonella, there is not much point in busting Lyme cysts. If you have erlich, you should have at least tried doxycycline by now.
If you are taking any antibiotics, you have to be treating for yeast. That means very heavy probiotics every day, that cover the widest spectrum possible. There are many different brands that work, but almost all good ones seem to cost about $25 a bottle, and come from the refrigerated section of a health store or grocery store. You also have to be on either diflucan or nystatin. Diflucan has more drug interactions, so you probably can't take it when you really go after the Lyme and co-infection, but in your case, maybe you could start out with it. Also, it helps to take an herbal product containing an ingredient called berberine. I take an extract called coptis, but if you can't find it in your area, try the best brand you can find of goldenseal. Take it for three days on, three days off, alternating.
Here is a good website listing information about herbs:
I agree 100% with the person who said you have to start taking actual vitamins and minerals. And you must take the omegas. Looking at Dr. B's guidelines, he mentions CoQ10, magnesium, plant and fish oil (get the refrigerated bottles from your health food store, take several grams a day until you level out), and alpha lipoic acid. Please allow me to strongly recommend two liver supports, milk thistle and N-acetyl choline (bottled as NAC). Get the sustained release.
Zinc will build up your immune system. Folic acid will rapidly increase the production of red blood cells, and it is required for someone with babesia. All the B complex vitamins will help with strength and balance. A supplement I've had good luck with, but which is a bit fringey so please just take it with a grain of salt, is vinpocetine, a periwinkle derivative used by stroke victims in Europe to increase oxygen flow to the brain. A more conventional product used in America is lecithin. Don't get lecithin pills, get a tub of it. And GiGi often recommends chlorella as a mild-mannered way to begin heavy metal detox.
For diet and fibromyalgia issues and/or celiac disease, a friend highly recommends this publication as a starting point:
If you have babesia, purchase some artemisinin supplements from www.vitacost.com, start with two pills a day just to start toning your symptoms down. You will eventually need more, but it sounds like whatever you do, you may wish to do it gradually.
Again, it doesn't sound easy to figure out what you have. While the supplements listed above are expensive if you are making your first investment in them, they can't be any worse than all these hospital visits.
In terms of antibiotic treatments, you should know that everyone here has different ones they like and trust, because everyone responds differently. I must respectfully disagree with the post that you should treat babesia first, because there is no surefire treatment for babesia right now. Some people are cured by mepron, but a lot more are on it for months and then relapse, and it is too heavy a drug for someone dealing with all these other problems.
In my non-medical opinion, get rid of the erlich first, then the bartonella. Even if you are only able to put them into remission for now, because the babesia is interfering, both of them are life-threatening, and bartonella can cause many of the psychological symptoms you describe.
If you still have money after all this, you may wish to add a supplement called bromelain to the pile. I have no idea if it works, but many people say it is a good natural way to deal with systemic inflammation, which is one reason you don't have much seratonin (sp?) left.
This antibiotic is probably too heavy for someone in your condition, but when you are feeling a little better, and your liver is stronger, I honestly would not, as a person who has tried nearly every antibiotic out there, try to get better without ketek. For those who respectfully disagree, I understand. Ketek is a miracle drug, but it is VERY hard on the liver, so you probably want to be on all these supplements and more, and much more stabilized physically, before you try it.
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posted
Huge, huge thanks to everyone who responded. There is so much to answer in your questions, and having trouble reading today w/out losing my lunch,
so - I will get help looking through all of this, and then respond. Thank you soo much. BTW - I do see Shirley Scott in Santa Fe, and she's very good - even Dr. K thinks so.
I had an appt. with him, but blew it (brain hiccup). In any case - will respond asap. thanks again.
-------------------- Forgiveness is the fragrance that the violet sheds on the heal that has crushed it. (Mark Twain)
"It's only after you've lost everything," ... "that you're free to do anything." (Chuck Palahniuk, Fight Club) Posts: 24 | From somewhere outside Boston, MA | Registered: Feb 2006
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