posted
I've run into a unique problem, and I don't know how to get around it.
I thought I had a potential allergy to Plaquenil after taking the drug for 10 days and developing some serious side effects. I had a noticeable change in skin tone -- it actually seemed like my skin was becoming weak (for lack of a better term); in other words my skin started to break open easy.
Then, I developed the neuropathy from hell. Shooting pains all the way into my head, and tingling that ran up my arms into my chest that left my hand forming "the claw."
If I laid down on my mattress, my body was covered in the markings from the mattress lining. Imprinted into my skin. Like some kind of water retention/neuropathy issue.
It all seems related to my adrenals and thyroid.
This forced me to stop taking Plaquenil and search for another option. 9 months later, I'm trying Mepron and had an onslaught of all the same problems starting to appear.
Great!
What that tells me is that I don't have an allergy to Plaquenil, if Mepron is doing the same thing to me. Must mean I'm attacking the Babesia.
Problem is the way my body reacts to this attack. It's like my adrenals can't handle what's happening, or my hormones get completely out of whack throwing off my whole endocrine system.
This isn't something I can just push through. It took me more than 6 months to recover from 10 days of Plaquenil. Letting my skin heal, and getting stronger, the neuropathy and water retention slowly improved after 9 months.
I'm very afraid of doing this with Mepron and having to deal with that again. I can't...
I don't know what I can do to uncover the issue that's causing this reaction. Can I really say it's just a herx? Many others can take Mepron or Plaquenil and never reported this problem.
Can I have some kind of serious block in the HPA?
I'm still losing hair, it looks like dried yarn now. My skin looks like crap, and all my symptoms improve or worse with sleep and rest. If I go a single night only sleeping 5-6 hours, I'm riddling with anxiety feeling, more little twitches appear, my hands, feet and body are colder, I'm pale in the face...
This screams to me ENDOCRINE...
but what can I do!?
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Yowser. I'm so sorry.
To repair the HPA, take Corvalen brand D-ribose, 5g 3x/day. You MUST take that dose. Add it to lemon water and it's a yummy lemonade.
Also take any high quality brand Phosphatidylserine, 400mg/day. And EFAs. Lots.
Have you been tested for scleroderma? Has your ANA ever come back positive?
As I'm sure you know, scleroderma is one of the autoimmune conditions that can be set off by Lyme and co-infections.
On www.roadback.org many scleroderma patients are treating for Lyme and finding resolution of symptoms.
Aside from the skin and claw symptoms, this all sounds like Babesia. I thought the claw was Lyme, but then a Lyme friend reported stopping her Mepron due to vomiting and her hands turned to claws. So, maybe Babesia?
I think stopping treatment is a mistake. Many of you RBCs have lysed, releasing more Babesia microbes into your bloodstream. You need abx on board to take care of those.
I would go very, very slowly with abx. Maybe try to achieve bacteriostatic at first. This would mean your symptoms improve, because the microbes are unable to reproduce.
Once you are stabilized, slowly increase your dosing. Sloowwwllly.
And if the antimalarials are too much, choose something that is 2nd tier for malaria/babesia organisms. It will have some effect, but not too much. I'm thinking Doxy or Clindamycin.
I don't think pulsing is smart for Babs, except with Artemisinin. Malaria is a drug-resistant organism. Don't give your Babs the opportunity to become resistant.
Have you considered A-Bab? Starting at a ridiculously small dose? Herbs also prevent antibiotic resistance, so could offer some peace of mind.
You can get through this. Lots of treatment is trial and error. And you just keep trying.
posted
Try abab if you can get it. During treatment for babesia I too had "the claw",it wasnt significant but I could feel it more than see it.
Skin was bad. I used lots of supplements and continue to.I have hair loss also,hear it grows back when you have stabilized.
Abab is an adjustable dose and safe. It was effective for me.I have been on a strict diet as well. With exercise and no stress plus relaxation techniques and prayers.
Good luck let us know how it goes.
Posts: 342 | From northern california | Registered: Dec 2010
| IP: Logged |
posted
Thanks, everyone. That's a lot to think about as far as treatment options.
I haven't stopped ABX completely. I just stopped taking Mepron. But, I'm still taking Minocycline, Azithromycin, Rifampin, and Bactrim.
I know Azithromycin and Bactrim have an effect on Babesia. I truly believe Bactrim is the only reason I put a lot of symptoms behind me. But, I feel like I'm uncovering something else in this dilemma.
Mepron and Plaquenil are cyst-busters right? If I had a cyst of the endocrine system somewhere, I wonder how this effects me. :{ I'm just dreaming up scenarios.
You know what really jerks my chain.. I've said this before, how a simple Prednisolone pill makes everything go away. I'm back to a million bucks, symptom free within 10 days. Hair starts growing back in, skin looks great, I can breath like a dragon, no anxiety.
I don't understand it. What is Prednisolone doing that makes everything so great. Stops the immune system from fighting? Well, if the immune system isn't fighting and the infection is running wild, why am I feeling great? I don't get it...
It doesn't make sense... Prednisolone has to have been doing something more important than I realize yet. And, I'm well aware I can't take it because the infection comes back worse. But, it's the closest thing I've found to giving me full relief.
When I try to take any supplements for the thyroid or adrenals, it backfires. I can't handle it. Even vitamin B makes me more tired.
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
That is a whole lot of antiobitics to be on. I can one or two, but 4?
Are you remembering to detox?
sorry you are going through all this and not getting better as fast as you would like.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Mepron and Plaquenil aren't cyst busters. Tinidazole and Mebendazole (Flagyl) are the cyst busters. Some day Fluconazole (Diflucan), too.
It doesn't sound like an endocrine cyst. It sounds like over-herxing.
Mepron and Rifampin are rarely prescribed together. Both are very hard on the liver.
Prednisone is a very strong anti-inflammatory. It also inhibits immune function.
When we are herxing, our bodies respond to all the die-off with inflammatory cytokines. It's the cytokines that create the actual symptoms of herxing.
Prednisone stops the cytokine cascades. No inflammation = no symptoms.
Please go easy on the Prednisone. Sometimes it's important to stop excess inflammation, but we need our immune systems at full functioning.
Did your LLMD prescribe this abx program? It's heavy duty. I often take 3 abx + 1 antifungal. I've seen 4 abx. But I've never seen 5 abx at a time.
Please don't go back on Mepron until you've consulted with your LLMD.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
The latest research on autoimmunity has suggested that autoimmune genes express themselves in the presence of high levels of ongoing inflammation. You may have a scleroderma gene that expresses itself when you are herxing severely.
It's weird to think these genes could turn on and off. We think of gene expression as a constant. Same with autoimmunity. Once it's there, it's there for good.
But we all know autoimmunity can be resolved with appropriate treatment.
posted
It sounds like a lot, but I'm not taking every antibiotic everyday. Minocycline is every other day, I'm taking 250mg of Azithromycin 4-5 days a week. Lowered dose of Rifampin and Bactrim. I'm very careful about not overloading.
I appreciate all the warm thoughts from you all, thank you.
BoxerMom, Is it reasonable to think I can take prednisolone while on antibiotics? The consensus is that it lowers the immune system, and therefore we should never take corticosteroids. Can you see why I'd be in a paradox, knowing this drug is like some kind of superhero pill for me?
I don't see how I could possibly push through this reaction without some kind of help to deal with the inflammatory reaction, or figuring out if I have some other kind of block.
It's worth noting that I am intolerant to practically any supplement that is supposed to benefit the thyroid or adrenals. All of them have had more negative effects (fatigue, nausea, mental confusion, lethargy) than any positive effects.
I still don't know what this tells me about my situation, when others who have Babesia have no problems taking beneficial supplements and report feeling great from them. Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
You can't take regular Prednisone. Some take a physiologic dose of Cortef for adrenal exhaustion. You could try that.
When my Babs was at its worst, I was completely adrenal exhausted. I tried the Cortef, but did not tolerate it. The D-ribose and phosphatidylserine healed my HPA.
That's weird about the supplement intolerance. Which ones?
posted
Did you bring up Scleroderma because of something I wrote about my symptoms suggested that? I had been fooling around with the idea that Scleroderma could be an issue for me lately, but I haven't done anything to confirm it. And, YES, there's nothing consistent about the Scleroderma-like symptoms; it seems to be more predicated on medications and herxing!
Phosphatidylserine was one of the supplements I tried. I bought a bottle of 60 500mg capsules from Source Naturals. How do you feel about that brand and dose?
If I remember correctly, this one gave me mental lethargy and confusion. And, I think it's touted as a good supplement for mental function. LOL.
Here's a few others:
Licorice Root RegeneMAX Zinc Evening Primrose Oil NT Factor
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
The skin symptoms are indicative of scleroderma.
The other thought is acrodermatitis chronica atrophicans. This is a very late stage manifestation of the European Lyme strain.
If you were exposed in the US, scleroderma is more likely.
Do you have allergies? Phos-serine is from soy.
During the worst of my Babs, I was allergic to everything, including most of my supplements. Especially gelatin capsules. My heart would race and my throat would start to close. Scary.
And I did not have enough pancreatic enzymes to digest a hard tablet like NT Factor Energy.
You could be allergic to a supplement additive/binder, as well.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Wait a minute. Mental lethargy and confusion sound like hypoglycemia.
Babesia scavenges glucose and magnesium from the bloodstream. Are you managing your blood sugar?
I can't eat any carbohydrates at all. Well, some full-fat, plain yogurt. But no grains, no flours, no sugars, no nuts, no root veggies. I eat a VERY low carb diet to manage my Babs glucose intolerance.
After one year of Babs treatment, I could eat anything. (And I did!) Now with my relapse, it's back to meat and veggies. Sigh.
posted
All sorts of allergies. Environmental allergies since I was 5 -- the works. Trees, grass, pollen, cats, dogs, ragweed, horses. One doctor said, "the world."
Then started the yeast intolerance. I first noticed when I was drinking alcohol my ears were turning red. That started about 5 years ago, along with my chronic sinusitis.
Then, histamine-rich foods were becoming a problem; what you cut out on a mold elimination diet. No dairy, cheese, sauerkraut, tomato sauce, pasta, bread. Now, I eat 85% vegetables, beans, rice, and meat. Occasionally potatoes, chocolate, and gluten-free pancakes, and such.
I occasionally eat things with soy, and dont have any issues with it.
NT Factor gave me headaches.
Blood glucose is interesting. I have never had a problem high blood sugar. Then during a recent lab results discussion, I was told my blood sugar was a little high at 103. Prior to this and when I was feeling worse, my blood sugar was in the 90s.
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
quote:Originally posted by BoxerMom: Mepron and Plaquenil aren't cyst busters. Tinidazole and Mebendazole (Flagyl) are the cyst busters. Some day Fluconazole (Diflucan), too.
Plaquenil is suppose to work as a cyst buster when used with doxycycline. Read that the other day when I was trying to decide whether to refill the plaq or not.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
| IP: Logged |
posted
Go on Roadbackfoundation.org and see all the people that are treating scleroderma with mino. They were Lyme positive too so that is the trigger. IV Clindy is also used once a month for a 5 days. Is your ANA pos?..There is about 20% of the population that is pos so that doesn't always mean that it is something.
Do you have genetic defects that require to use lower doses of meds because your body cannot detox normally? Genelex is a good company to get this checked and can literally save your life. Have you had the blood tests for scleroderma? The treatment is still the same as lyme.
Do NOT go to a regular Rheumy but one that treats with ABXs. Otherwise they will try to put you on Biologics, Cellcept, Remicade,etc. That can kill you by dropping your immune system and the bugs go stealth. Dr. Brown back in the 50s is the dr that started the treatment for auto immune disease with ABXs. Mino was the med of choice. He did use very low doses of prednisone , 1-5 mg at the beginning of treatment to get the inflammation cascade under control. Some ABX Rheumys use that.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
The blood glucose labs generally aren't that useful for us. To be accurate, you need to be fasting. Most of us can maintain a normal level of fasting glucose. It's when we eat that things go haywire.
The Babesia cleans all the glucose out of the bloodstream, especially when replicating, but the liver can't undergo gluconeogenesis to replace it. That makes us hypoglycemic.
With Lyme, the speculation is that either the pancreas is infected and can't regulate insulin, or that insulin/cortisol receptors are blocked by neurotoxins. With Lyme, patients become insulin resistant, which causes hyperglycemia.
These conditions are the opposite, and should not be able to co-exist. Isn't Lyme just great?
Basically, we have some weird form of glucose intolerance and metabolic dysfunction.
I crash terribly after carbs - body, brain, emotions. Right down the toilet. I'm a mess.
With a low carb diet, I'm fine. That's why I suggested watching how you react to certain foods.
I think you need to treat for all your infections, but be smart about it. Even with skipping days, I don't think you are tolerating all the abx you are on.
Find out what helps you make progress without crashing. Sometimes that's trial and error.
Whan my Babs is the most prominent infection, I can't treat heavily for Bart. I can take Bactrim or Biaxin, but not Levaquin or Rifampin. It's too much.
My Babs/Lyme program is Mino, Mepron, Zith, and Diflucan for yeast. I'm herxing and functional. That's pretty much what I go for with each round of abx. Herxing but functional.
During the first year of treatment, I was much less functional due to my pathogen load. But I was never as sick as what you are describing.
posted
Here is my two cents input. Have you been on Bactrim the whole time? Bactrim is a nasty drug. It can give you toxic epidermal necrolysis. It is a rare reaction, but people have died from it. I got it. When I went to the dermatologist, he was horrified and positive that it was a bad reaction to Bactrim.
Toxic Epidermal Necrolysis (TEN), also known as Lyell's syndrome, is a life-threatening dermatological condition that is frequently induced by a reaction to medications.[1] It is characterized by the detachment of the top layer of skin (the epidermis) from the lower layers of the skin (the dermis) all over the body.
There is broad agreement in the medical literature that TEN can be considered a more severe form of Stevens-Johnson syndrome and debate whether it falls on a spectrum of disease that includes erythema multiforme.[2][3]
Posts: 123 | From Los Angeles | Registered: Oct 2006
| IP: Logged |
posted
While I was on Mepron I used Bactrim. But, when I tried Plaquenil I had the same reaction, and that was before I had ever used Bactrim.
Bactrim makes my hands a little dry, but other than that, it hasn't done anything else to me.
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Wolfed Out, can you tell me more about the following:
The latest research on autoimmunity has suggested that autoimmune genes express themselves in the presence of high levels of ongoing inflammation. You may have a scleroderma gene that expresses itself when you are herxing severely.
It's weird to think these genes could turn on and off. We think of gene expression as a constant. Same with autoimmunity. Once it's there, it's there for good.
But we all know autoimmunity can be resolved with appropriate treatment. --------------------------------------------------------------------------------
I am in that boat...lyme/babs treatment equals a sjogren's/interstitial nephritis reaction that is painful and causes blood in the urine, swollen lymph nodes, organ pain, drying of mucus membranes......
Drop the medication and the reaction goes away, but lyme/babs would kill me in a month. 3 days off and I'm sobbing in gut wrenching pain.
I don't know how to live anymore. Where to go from here. I"m only 47 years old. Three daughters, and part of me is very ready to through in the towel and die. The other part can't leave my kids for anything.
How can I live?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Hi Mary - Wolfed Out is taking a break from Lymenet to focus on his health. You might try PMing him to see how he is managing his symptoms while treating.
People who have these issues often need to go very slowly with antibiotics. Smaller doses, pulsing (not taking every day).
And do plenty of detoxing and anti-inflammatory herbs to keep the inflammation down!
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I was given plaquenil for lupus (not) 11 years ago and had a reaction to the generic version. I was on the brand name for 11 years and did fine. In fact, I think it kept Lyme at bay so I could work and be mostly healthy.
So... I wonder if you had generic or brand name plaquenil?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| 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!
![[Frown]](frown.gif)
Printer-friendly view of this topic